Test of Faith

A fresh start

2011-10-08T23:22:00.000-07:00

We moved to a new school district and things have been so much easier where we live now. Though we are about 15 minutes from our other school district the difference is night and day. Aidan has been adjusting well to the changes. We truly couldn't ask for anything more.

Aidan is happy playing soccer this season and of course going to school at the same place he did before. He has a new teacher this year and about 5 classmates in his classroom.

We are blessed.

Mediation

2010-07-03T22:38:00.001-07:00

I cannot say much of anything except to say that I no longer need funds for Aidan's defense fund :)

Our school district sued my son. He has autism.

2010-06-02T16:56:00.001-07:00

Our school district sued my son. He has autism.

The Alta Loma School District is suing my six year old son who has autism and needs special education classes. They are also suing my husband and me.

I got the notice a few weeks ago. The school district wants a judge to declare that the district offered my son what federal law says it must provide him: a free, appropriate public education in the least restrictive environment.

One of the difficulties you run into when writing about the education rights of disabled children is that the real importance of these issues can get lost in all the official language and alphabet soup.

So I’ll try to explain as simply as I can:

Federal law says a child in special education is to be provided a free and appropriate public education. This education should be in the least restrictive environment. There are a lot of rules that determine what’s free, appropriate and least restrictive. That last term generally means that a child in special education should have the chance to learn alongside his non disabled peers to the greatest extent possible.

Next step: When a child is in special education they are supposed to get an Individualized Education Plan each year.

The plan is both a legal document as well as a blueprint for the services the special education child will receive, and where and with whom the child will go to school. The plan is supposed to be written with contributions from all the planning team members. That team is normally comprised of parents, a general and special education teacher, a speech therapist, an occupational therapist, a special education director, a psychologist and sometimes others.

But these plans become the subjects of disputes between school districts that want to minimize their spending, and parents, who want an appropriate educational opportunity for their children, without going broke providing it.

When my son’s plan was presented in April, the district’s special education director made an offer for a school placement which she considered to be both a free and appropriate placement in the least restrictive environment. Rather than signing the plan at the meeting I always go home and after rest re read it.

All parents should as well. The parent has the ultimate power to sign the plan and with some options: The parent may agree wholly to the plan; agree somewhat to the plan, taking certain services and agreeing to them and not others (like an a la carte’ menu) or disagree with the plan.

My husband and I agreed somewhat to the plan agreeing to one service and not agreeing to the rest of the offer. We agreed to a service of Applied Behavior Analysis. We did not agree to placing him at a county school because we do not feel it is appropriate for our son, nor do we feel he is likely to receive any meaningful educational benefit in that placement.

We currently have our son in a non public school. Here he has daily interactions with children who do not have autism from local charter and home schools, he uses touch screen computers, assistive technology, and highly educated people work with him one-on-one, which is something he requires. We are not asking our son’s school district to pay for this school. We have written to the district letting them know that our son was at this school.

On May 19, 2010 we received legal papers in the mail. It was a due process filing from the school district’s attorney, evidently to obtain a judge’s declaration that the school district’s offer was sufficient – that is, that it was free, appropriate public education in the least restrictive environment.

Our reaction to this is frustration and anxiety. If we want to attend the hearing with an attorney we must spend money to retain one and this is money that we obviously haven’t budgeted for. Life with a child with special needs is already filled with complications and adding harassment and retaliation from a school district would obviously increase stress for a family.

So the district is choosing to file against my family and spend money on attorneys to sue us rather than to wait up to two years to see if we will file due process against the district.

And here’s what hurts all of us whose children need special education: The money that is used on attorneys to sue a family comes out of special education funds.

This means that in the district’s quest to make certain that they can cover themselves against a potential future due process filing by my family they are, in essence, taking away taxpayer dollars designed for special education programs and services and using these dollars instead on law firms and attorneys to sue a family such as mine.

What are your thoughts on this? If you are going through this, or have questions about this process, I’d be pleased to chat with you here on The Freeway.

Rally to Promote Change of Leadership in San Bernadino County Superintendent of Schools

2010-05-29T21:22:00.000-07:00

On Saturday May 29th from 2 to 3 PM parents residing in San Bernadino County came together in Rancho Cucamonga to rally for change in education and vote out incumbent San Bernadino County Superintendent of Schools, Gary Thomas. Though Gary Thomas has been touted by various news outlets endorsing his campaign for his “financial oversight” and vast experience in the “financial realm” parents in San Bernadino County know better. Gary Thomas runs the San Bernadino County Schools with a lack of transparency, wastes tax payer dollars and is fiscally irresponsible. Our message as parents to those who desire fiscal responsibility and a transparent government is this: when you go to the polls to vote for a San Bernadino County Superintendent of Schools, throw incumbent Gary Thomas out!

RALLY to Promote Change of Leadership in San Bernadino County Superintendent of Schools May 29th 2 PM Rancho Cucamonga (Haven and Foothill)

2010-05-28T16:32:00.000-07:00

Join us for a RALLY to Promote Change of Leadership in San Bernadino County Superintendent of Schools

Saturday, May 29, 2010
2:00- 3:00 p.m.
North East Corner of Haven & Foothill (by Panera), Rancho Cucamonga

The following occurred under GARY THOMAS, current Superintendent of San Bernadino County Schools:

WESELPA (West End Special Education Local Plan Area) in Rancho Cucamonga, California agreed to continue at non reduced rates the contracts with three law firms that are contracted with the sole purpose of litigating against special education children and their families. Last month the WESELPA cut by 2% their contracts with Non Public Agencies as well as Non Public Schools for children with special needs.

One of these law firms, Fagen Friedman and Fulfrost, has a foundation rooted in deceit and poor ethics as well as school district/SELPA and therefore taxpayer dollar waste.

WESELPA and Alta Loma School District decide to pursue litigation against a family that is not asking for anything. This is a waste of taxpayer dollars. YET, WESELPA reported at the Community Advisory Committee (CAC) meeting that California is looking at a “$3.8 billion special education funding shortfall.”

The Daily Bulletin endorsed the campaign of Gary Thomas for County Superintendent because of his “financial oversight” and vast experience in the “financial realm.” PARENTS OF CHILDREN WITH SPECIAL EDUCATION CHILDREN KNOW THE TRUTH! A VOTE FOR GARY THOMAS IS A VOTE FOR FISCAL IRRESPONSIBILITY!!!!

Time to throw the incumbent Gary Thomas out of office!

Vote Art Delgado Superintendent of San Bernadino County Schools!!!

Children are WELCOME!

Education industry lobbies Congress in favor of seclusion and restraints for children

2010-01-24T17:12:00.001-08:00

Education industry lobbies Congress in favor of seclusion and restraints for children

Posted using ShareThis

Embryonic Stem Cell Research Vs In Vitro

2010-01-03T12:57:00.000-08:00

I have been thinking a lot about how embryonic stem cell research is really all that different from those who do in vitro fertilization. Obviously to perfect in vitro fertilization I am certain some "fetuses" had to die during the research process. The scientists probably said it was for a greater good because ultimately they would be able to help create babies and push them into existence and help millions of parents worldwide with their research and technology. How is this any different than embronic stem cell research? The one person I know doing this in India for instance used only one embryo for her research and has duplicated from that to help thousands of people with their diseases ranging from MS, diabetes and more. Why is it morally correct to the vast majority of Christians to utilize in vitro but incredibly morally incorrect to utilize embryonic stem cell research? Is this once again an example of what I have heard others call "love the baby, hate the child?" I am not convinced that either of these is something God has an opinion on but then again I didn't hear him speak too often of autism either in the Bible. Then again vaccines were never mentioned but they are often widely taken on as gospel by all. I was one of those. Like sheep the slaughter, Anyway of this I am sure, God has a plan. He uses all for his glory. What that will ultimately be in either of the two modalities above we shall see.

Made it through the Holidays, just barely!

2010-01-03T12:48:00.000-08:00

Well this year I asked my mom during her annual cookie day to see if she could look up a recipe that would work for Aidan and by golly she did! I am very proud of her and this first step she made. We will have to perfect the ingredients list a little better next year (coconut oil and no oatmeal) but overall it was lovely to have her step up and research a recipe and complete it just for Aidan.

The holidays were not so horrible. Thanksgiving we went away to Knotts. And Christmas we went to my parents Christmas Eve to have a feast I brought over from Trader Joe's, tamales and beans and chips and salsa. And Christmas day was the toughest at my aunts for a feast mostly none of which Aidan could have including tons of deserts all except his cookies he couldn't have. Keeping him away from the low table of these was hard. We had some external external family show up and something happened that was disturbing to me and reminiscent of my youth: every family but mine the kids were invited over for a sleep over. That was a bummer. This happened at my Christmas eve with my dad's side pretty much every Christmas where plans for a Big Bear trip not involving my family was discussed across the table in detail between the other brothers and sisters but not my dad. I am trying to decipher whether my son wasn't invited because well plainly he has autism and would be a handful and I would've said no anyhow etc etc or because simply they are just plain rude. Probably a mixture of both I suppose. What can you do. We didn't stay too long made it through food and opened presents outside with the kids and took some photos and that was our Christmas day there. Aidan did well overall.

Why I am a Progressive

2009-10-06T20:05:00.000-07:00

I grew up very Conservative. Very very Conservative Christian family. I had an anti abortion binder that I carried around in junior high and high school that I was very proud of. It had pictures of babies on the front of it pasted on with information on abortion clinics. My uncle and aunt invited me to their weekly abortion clinic visits which they would attend and sit and protest women getting abortions. I didn't go to these I was too young but they would attend. Being gay or should I say practicing homosexuality was looked upon as truly a heinous behavior, a deprived behavior. I was very proud of myself when I would speak with others and very high high high on my high horse as the saying goes. I look back in shame on this. Shame that I was such a judging young person.

As far as politics go I can only remember my parents speaking negatively about Clinton briefly and his affair. I would say well if he can lie to the American people about his adultery imagine what else he is lying to us about.

It wasn't until this election, this Presidential election that things began to get heated. In the first election my husband and I voted for Clinton. In the next election or final election we voted for President Obama. My entire family voted instead for McCain.

Both my husband, my dad and my brother were laid off of work. My dad started watching more of Fox (Faux news) daily and reading Glen Beck books. Never before had he been interested in discussing politics or really bringing them into the realm of "christianity." All of the sudden his men's christian groups were focusing in on the political world namely our newly elected President. One church that our family is familiar with Calvary Chapel Chino Hills recently held a town hall meeting promoting that the health care for all bill is voted down. Something seemed incredibly wrong with this picture and still does to me.

Now I don't mind a debate. In fact I like to debate. I enjoy it. Where it gets trouble some for me is when it becomes personal. I have been told by family you cannot be a Christian if you support our President or are progressive. I am not affiliated with a political party but have said I am progressive so that's why they go that way. I have been told you grew up believing homosexual marriage is wrong and abortion is wrong how can you now be a progressive. I have been told I don't "serve my country" and wouldn't even if I had the chance. When I retorted I do serve my country I am a community server of sorts the response back was that's not serving your country.

But all this to say the point of my post the reason I am a Progressive. I am a Progressive thinker because of my son and the fact he has autism. Those that are Progressive their goal is to save programs that serve people with disabilities such as autism. The goal on the other side of the aisle has been to ward off tax hikes and cut programs. All of the programs that have helped people with autism have been spear headed by Progressives, from social security, medicare, Americans with Disabilities Act and more. One of my heroes and lion of the Senate Ted Kennedy made it his mission to assist those with disabilities. I believe at the root of Progressive is to put people before profit, a sense that we must look out for one another, love one another, care about one another. The other side speaks of letting the weak fail and that the strong shall survive and that you can get through things if you pull yourself up by your bootstraps. They speak lovingly of democracy and the country first motto but in reality what our country is is a capitalist me first society. When I think of what Jesus would look at in terms of how he was in the New Testament here on Earth I think of Progressive. And look I am not saying that this President is perfect or that I agree with every policy. I am purely speaking of the philosophy that goes alongside the party of Democrats that are Progressive and Republicans that are Conservative. I am a Christian and I am Progressive. And I believe that in my interpretation of the Bible and more specifically the new Testament Jesus would have called himself a Progressive rather than a Conservative anyday.

Parents Just Don't Understand

2009-10-06T19:43:00.000-07:00

Something I have been thinking about writing about but haven't is the subject of extended family and their response to autism or a child who has autism. My family specifically likes to use food. Food represents love. So when my son who has autism can no longer eat the foods my extended family eats the choice has been to let him cheat, to force him to abstain, not to attend events etc. When I have had parties and have tried to make foods my son can eat for the entire family or order them special I have been criticized for doing so and told to make or buy the rest of the people there "real" food.

My son doesn't want to love on or hug just anyone. It seems the only way my parents especially can relate to my son is by disciplining him. Aidan get off that table! Aidan No, No! He looks at them and sometimes listens. That's the only time they get a look from him normally so that's all I find them doing with him, verbal discipline.

Then there are the other members of our family. Let's just say they don't all rush to volunteer to watch him while we are somewhere and I want to do something else like have a grown up discussion. Never mind the fact that my husband and I were the token watchers of all nieces and nephews for them. I have never ever been able to relax, take it easy and enjoy at a family gathering with someone in my family saying hey don't worry I will watch him for a bit.

Who I have become as a matter of becoming an autism parent is something my family and parents just don't understand. They have no idea what I do, what groups I belong too, why my ideology on so many things has changed. Some families especially grandparents when they hear a grandchild has autism it is as if some mechanism forces them into action and they become so interested and wanting to help their child who has a child with autism. I thought that would happen at least with my mom but it didn't. Oftentimes I feel like such an outsider with my extended family. Their reaction or lack of reaction has been so demoralizing. I think I just needed an outlet to express that.

Cause for Incitement

2009-06-10T14:02:00.001-07:00

Cause for Incitement

Budget Crisis in the State of California Public Comment

June 3, 2009
I STRONGLY URGE YOU TO WRITE AT MINIMUM NOREEN EVANS! MAKE YOUR COMMENTS KNOWN!!!!
Make comments on the Governor’s proposed cuts too (and other budget proposals) (via US Mail – faxing not recommended):

Assemblymember Noreen Evans, Chair
Assembly Budget Committee – Budget Conference Committee
State Capitol
Sacramento, CA 95814

Be sure to include your complete name and address. You should also send a copy to the vice chair of the Budget Conference Committee, Sen. Denise Ducheny (she is also the chair of the Senate Budget and Fiscal Review Committee).

Sen, Denise Ducheny, Chair
Senate Budget and Fiscal Review Committee
State Capitol
Sacramento, CA 95814

Disabled in California by Kristie Sepulveda-Burchit
The state of California made a solemn promise to its disabled population in the late 1970’s. The promise can be found in the Lanterman Act which was passed in 1977 and can be found in the California Welfare and Institutions Code beginning in section 4500. The language of the Lanterman Act I have often said is quite beautiful. The commitment and promise that this Golden state made to its disabled is sacred. Today the citizens of California are tested by Governor Schwarzenegger to break a promise made to the disabled as well as other newly disenfranchised groups. The question now remains what the people with ultimate authority will do about it.
During the events of last Wednesday during public comments several people likened the position that the joint budget committee (made up of senators and assembly members) were in was akin to the doctors put on trial in Nuremberg. More specifically the crime directed at these physicians was for their “crimes against humanity.” The doctors at Nuremberg, at minimum those who were convicted, committed or were responsible for ordering a huge amount of atrocities against the disabled including withholding medical care, conducting atrocious experiments and the list goes on and on. This was during the Nazi regime in Germany and its outer laying procured countries. Faced with the governors demand for cuts and elimination of programs and services to our disabled, if these are approved by the budget committee a majority of those from the public speaking believe that this committee is doing as much to deprive it’s disabled and other disenfranchised minorities that were represented of medical care as well as causing deaths to many just as those put on trial at Nuremberg did. The term democide comes to mind as this specifically is the murder of any person or people by a government; specifically the California government.
On that note, as I was recently flipping back and forth through news stations to see the different perspectives, during one of my visits to Fox Glen Beck made a statement about what the elite in this country have believed and always believed. Now he was talking about letting businesses fail but what he said of course can be extended to other areas of life. He said there is and has been a belief in this country in evolution as well as natural selection. He said the failure of the weakest makes others stronger. The panel and he went on to discuss other welfare related programs with the key person contributing being the equivalent of a glorified “bookie” but that is neither here nor there. Here you have a belief system entrenched in this country that has firm roots as a result of the Nazi party thinking that rather than helping our “weak” or aka disabled we should give up on them and let them and the programs and services fail and be cut so that the strong in this state and country can further prosper.
If this is the belief system that our society is beginning to hear and listen to and become desensitized by that is truly scary to me. In a time of recession and depression society tends to scapegoat a group. In Germany the time was ripe because their country was devastated financially so that Hitler could so easily blame what he viewed as the weakest because of their genes or because of (something often forgot about the Nazi’s) their disability. It is often forgot how many men women and children died after torture via experiments that were inhumane and authorized by physicians simply because the unfortunate were disabled. Today in 2009 we have often said since that time, never again. We falsely believe our society has changed positively overtime so that we would never be that type of people that hurt the weak and or the innocent. In this country, the United States is in a time of financial crisis. A state most entrenched in that crisis is California. The governor has made it clear in his budget proposals that he will scapegoat and penalize the weak and or the disenfranchised innocent for the financial crisis. It is up to the budget committee to decide if they will follow his lead or remember their humanity and remember the promise they made to us as citizens of this state when they accepted “responsibility for persons with disabilities” and agreed they had “an obligation to them which it must discharge.” (California Welfare and Institutions Code 4501).
I will now outline some of the things discussed during public comment. From 9-10 30 AM we discussed Healthy Families being eliminated as well as Medi Cal issues. We had several physicians, pharmacy representatives, single parents, elderly discussing both programs even some that cared for grandchildren in the program, as well as the disabled. Healthy Families is a state insurance program that serves over 900,000 lower income children in California. For every $1 the state pays in this program the federal government gives the state $2. President Obama recently in February of 2009 reauthorized the program as well as funding it and gave his written endorsement of the program to continue. Many children depend on this insurance especially in this economy with parents being laid off. Most of us parents know this program is very useful for services our children need such as speech, occupational as well as behavioral therapies.
I spoke three times during my public comment as they broke the day up in sections. I spoke briefly of the importance of this program for our children and some of the benefits for it. But what the committee is mostly looking for is innovative ideas to save these programs and services. So I discussed during this portion as well (we all had 90 seconds max) as the fact that the state needs new sources of revenue and that they need to think “outside the box.”
During the Public Health, Medi Cal Pharmacy, Proposition 36, emergency medical services authority portion several parties spoke. There were many there stating the law of proposition 36 doesn’t change so that a person could be offered rehabilitation or jail time could still chose rehabilitation and if the state has no program because they have cut it then there is a deep misunderstanding of what the plan would be. In addition poison control a phone number many parents have called is on the chopping block and even physicians spoke who actually get calls from patients and they in turn call poison control because they don’t have answers. There was a person with AIDS who had hepatitis B since birth there that will lose her much needed medication because that as well is being looked at for cuts. There were people during this time for shelters from domestic abusers that houses children and the victims. There were several ideas to raise revenue for these programs including raising taxes on alcohol and tobacco. According to research 85% of Californians support an alcohol tax. Apparently this is in bill AB 1019. People spoke about care for the elderly including those facing alzheimer’s. Some spoke of the fact that families are one hospital visit away from bankruptcy. A child’s illness can bring a family homelessness. Someone asked a very important question about why the Governor’s budget and what we were discussing that day was talking in terms of complete elimination rather than suspension as was supposed to be the plan.
During the discussion on Regional Center and Department of Developmental Services there were several hundred people coming and getting in line for their 90 seconds because that same day there was an event on Capitol Hill regarding the Olmstead Act anniversary. Most people got up and said please don’t cut this having to do with regional center and some suggested cutting down the developmental centers. My focus was on the early start program and I spoke a little about that because the people that are with early start the proposal from the steering committee would put the children out of the system potentially from age 2-3. I guarantee those parents are not thinking about legislation or advocacy so I felt I should speak on behalf of their kids. Being that I knew they wanted ideas of where to get revenue I gave them an idea to think outside the box involving “legalizing” and “taxing” items to get some revenue for which I got a few eye rolls by the committee and some laughter as well from the crowd and thumbs up from veterans in wheelchairs in line as well as some caretakers for IRC clients. I also said I was behind taxing of alcohol, sugar, caffeine products whatever to help protect the rights of the innocent here.
After lunch we discussed In Home Supportive Services. This time they made another announcement on concentrating on ways to save the state money for this program during public comment. I pointed out during my time that this state actually already saves quite a bit of money on this program conducting IHSS as they do. Other states hire a nurse at nurses wages ($40-$50 an hour!) to come and do IHSS services. When the state of California is paying between $8 to $11 an hour for IHSS services they are saving money! I also made a third plea for them to get out of their comfort zone and think outside the box in terms of revenue. I also reiterated what another man had said before me that the people did not speak when they voted no on the propositions. I said they didn’t understand them, we had a dismal turn out of less than 25% and that it was the legislator’s job to do a budget and not entrust the people to do that budget. I said furthermore if the majority does something to the disenfranchised minority where their rights are taken away this is unethical. In other words if the people voting no on props and our governor basing these cuts on that saying the people have spoken and no taxes, and this in fact directly impacts and hurts our community (the minority) that is unethical!
Several wise comments were made including these: the state of California didn’t vote as a whole to let the propositions fail. Instead it was a vote of no confidence. It was a dismal turn out of voters. The people of California have no confidence in a legislature that chooses to put the state of the budget in the hands of the people rather than solving it themselves. Even if the people had spoke as a majority, if the majority speaks for the disenfranchised minority who would be hurt by the majority this is unethical, immoral and unconstitutional. Someone said the cost of nothing is more than the cost of everything in terms of them cutting the budget down as much as they want too.
Some inventive ideas included repealing taxes that have been given in the form of tax breaks to the wealthy and the big corporations and big business even this last fiscal year. A young caregiver brought up taxing cookies, cakes, sugar products etc and went on to discuss what the state was paying for diabetes care. I mentioned tobacco and alcohol tax previously. Someone brought up re introducing the vehicle tax. I believe an elderly veteran brought up eliminating tax breaks to corporations and also he had an idea to have prisoners pay for their keep. He also went on to say increasing the tax amount to the wealthy and laid out a plan for this. He went on to say the budget committee should have a pledge card in which they say I won’t throw poor people, sick people, old people, disabled people, veterans, children under the bus!
They went on to discuss CalWorks programs, SSI and then Foster care but they didn’t want repeat testimonies so I didn’t speak on these programs though they are vital.
After the meeting within a few days more cuts and eliminations of programs have been discussed and I am sure will be discussed.
After this occurred last week they once again got together Tuesday I believe and discussed potential cuts to the education, the community colleges, CSU’s and UC systems and also the disability centers at these campuses. Yesterday (Tuesday, June 2nd) our Governor spoke and from his speech he said
The immediate task before us is to cut spending to the money available. And we have no time to waste. The Controller has told us we have 14 days to act or California is at risk of running out of cash. I have already used my executive authority to reduce the state's payroll. And I have proposed the necessary cuts to the three largest areas of our budget: which is education, health care and prisons. I know the consequences of these cuts are not just dollars. I see the faces behind those dollars .I see the children whose teaches will be laid-off...I see the Alzheimer's' patients losing some of their In-Home Support Services .I see the firefighters and police officers who will lose their jobs. People come up to me all the time, pleading, "Governor, please don't cut my program."They tell me about how the cuts will affect them and their loved ones.I see the pain in their eyes and hear the fear in their voice. And I hear the demonstrations outside the Capitol.(there was a demonstration going on yesterday with CDCAN) It's an awful feeling.
But we have no choice. Our wallet is empty. Our bank is closed. Our credit is dried up.

I implore you as citizens of the state of California to write to your legislators with any new ideas for revenue to the state or any cost savings ideas to the state. I implore you to briefly mention the importance of the programs but also to focus on cutting the bureaucracy that exists and hurts consumers as well. I implore you to quote from the promise made to the disabled in the language of the Lanterman Act. When I have seen items in the news recently about this issue I hear only one line about the devastating cuts and eliminations for the disabled but it’s only news worthy because they focus on the cuts to AIDS and education. While these are obviously worthwhile and notable items the cuts to the disabled have been happening for years and continue to devastate our community and in fact hurt or lead to death for many consumers. It must be stopped and I implore you to let your voice be heard for my child, for your child, for all of our children and the adults that these cuts affect.

BUDGET CONFERENCE COMMITTEE MEMBERS

The Budget Conference Committee consists of a total of 10 members – five legislators each from the State Senate and Assembly instead of the usual 3 members each.
Democrats will control the Budget Conference Committee with 6 members (3 members each from the Assembly and State Senate) with Republicans having 4 members (2 members each from the Assembly and State Senate).

The Assembly members of the Budget Conference Committee are:
• Assemblymember Noreen Evans (Democrat - Santa Rosa) – Chair
• Assemblymember Kevin de León (Democrat - Los Angeles)
• Assemblymember Bob Blumenfield (Democrat - Woodland Hills)
• Assemblymember Roger Niello (Republican – Fair Oaks)
• Assemblymember Jim Nielsen (Republican – Gerber)
CDCAN Note: Evans is the chair of the Assembly Budget Committee. De Leon is the chair of the Assembly Appropriations Committee. Niello is the vice chair of the Assembly Budget Committee.

The State Senate members of the Budget Conference Committee are:
• Senator Denise Ducheny (Democrat - San Diego)
• Senator Mark Leno (Democrat – San Francisco)
• Senator Alan Lowenthal (Democrat – Long Beach)
• Senator Bob Dutton (Republican - Rancho Cucamonga)
• Senator Mimi Walters (Republican - Laguna Hills)
CDCAN Note: Ducheny is the chair of the Senate Budget and Fiscal Review Committee. Leno is the chair of the Senate Budget Subcommittee #3 on Health and Human Services and the Senate Public Safety Committee. Dutton is the vice chair of the Senate Budget and Fiscal Review Committee.
Take Action!

Cuts to the California state budget in the realm of HUMAN and HEALTH (think about that) services will no doubt be coming shortly within the next days and weeks and definitely prior to July 1st. Our voice must be heard! I urge you I implore you to SAY SOMETHING!

Our Governor's recent response to the promise in the Lanterman Act made available here

http://www.ustream.tv/recorded/1610528

Interviewer: "Joyce Hearn, one of our readers, wants to know if you intend to keep intact the Lanterman Act which is the California law that guarantees services for the developmentally disabled." Governor: "Um, you know it's all on the chopping block. It's all part of the budget And I think that we try to...I'm very sensitive about that because as you know my mother in law one time called me about that when I made cuts a few years ago there. So, but, like I said, I cannot pick and choose, to pick and choose would be the wrong thing here. It has to be somewhat across the board. And so that is also one of the things we are looking at."

To that I say across the board cuts? Where there is potential to loss of human life and where there is potential to witholding health services from a life that is to be the priority over all else. To do nothing short of that is immoral, unethical and unconstitutional.

Considerations

2009-05-08T12:25:00.000-07:00

Aaron and I are considering different directions for Aidan's schooling. We are considering charter schools as well as looking at non public schools. It is not as though there are terrible teachers in the county programs. There are some very good ones. There is though a lack of the the things I find incredibly important like a 1:1 aide for kids who need them, inclusion and mainstreaming in regular classrooms during parts of the day and definitely lunch, recess with the other children. These aren't happening and I see some of these classes failing because of that fact. I think there is a lot to consider as we move forward and nothing is set in stone.

To every season....

2009-04-23T17:57:00.000-07:00

First some positive things to report: Aidan has been making more of reciprocal connections with us. Smiling and dancing while we imitate him and smile and dance and keep the interaction going. He even laughs in delight at this back and forth. It is awesome!

We just had a very very collaborative IEP with the school and I look forward to working with them to discuss placement in the upcoming month. Aidan is going into kindergarten and I am looking around at placements that would accomodate his needs.

Will update after the next IEP in May.

Private Practice Pushes Pharma

2009-01-12T19:27:00.001-08:00

There are a myriad of reasons why the episode of Private Practice that recently aired bothered me. It could be the lack of empathy from the doctors discussing a parent who chooses not to vaccinate but rather a discussion of the CDC and American Academy of Pediatrics saying vaccines do not cause autism and perhaps we should report her to child protective services for not vaccinating. It could be the characterization of the mom and her child with autism. Mom whose comments ranged from autism stole his soul and he's not there anymore (FYI media and parents who think and speak this way: They are there! Everything is going in!!!) Believe it!!) . To mom ultimately looking like she is wholely responsible for her child's death and that her actions were negligent and uncaring and that her truths and reality were unsubstantiated (that vaccines cause autism.) Though I did like her statement to her pediatrician of I DON'T CARE WHAT YOU KNOW! I KNOW WHAT I KNOW! It could be the drastic action taken by her child's pediatrician after her son almost died from a severe onset of the measles when he went outside and with vaccine in hand poked her youngest unvaccinated son with the measles vaccine in self righteous indignation. I was aghast. In talking with other parents of children with autism who by the way mostly have children that are fully vaccinated they were hopeful the episode would translate into an onslaught of seeing how terrible this pediatrician was in his action of forcefully, unethically and without permission vaccinating a parent's younger child. Instead what has occurred is the public I hear through message boards and in general conversation not exposed to the world of autism is that people admired what the pediatrician did! People think the parent (mom) was out of line for choosing to not vaccinate her other children. People think that this mom was responsible for her son's death. This show and probably more shows and news segments to follow will aide in the desensitization of society to these untruths and more. It's sad and it's scary.

Change in the economy change in treatment plan

2009-01-12T19:16:00.000-08:00

Well the economy straight up sucks. Jobs are being lost. Wages are decreasing. Gas prices that had gone down are going back up. Times are tough all around. Nowhere I think is this more evident than in the world of autism or at least those who chose to do alternative treatment. We had been doing homeopathy or energetic homeopathy for a year or so but could simply no longer afford it. So we are now doing with our lil man something called homeotoxicology. We are in stage one which is stabilizing him. It's the first level and that name sounds so severe like trying to get a patient on the table stabelized and that's exactly what it is.

These are the stages and I am sure we have a road ahead of us. But that's okay. It's affordable and doable for us. I struggle with should I give straight up meds or no because that might be the easier road but for now we are sticking to this.

Phase I (Stabilize) with emotional support. Phase II is Vitalize where we build up the adrenals, neurotransmitter and gut support, Stage III is Neutralizing toxins from the outside-in, inside-out and Stage IV is Energize where the child is on a maintenance schedule customized for them.

To every season...

2008-08-14T19:27:00.001-07:00

Well I am no good at transitions. I'll tell you that's my big autistic trait I have all on my own. Perhaps my son does better than I do. We are both going to be transitioning to an ABA agency moving from one to another. I am scared. I am scared for Aidan but mostly scared for me. Not a fan of change. We are sad to have to leave one agency but it was better in the long run because we want to work with the school district as we may have to be good friends for years to come. Who knows what the future holds.

Also I am running for the school board. So if you live in Alta Loma Elementary School District, come this November vote for me!

Dr. Klinghardt Conference August 2008

2008-08-14T15:50:00.000-07:00

I have learned a great deal in the world of alternative medicine in the past several months. First there was the LIA Conference out of Indian Wells, CA and next this past weekend I attended the Dr Klinghardt Autism 2008 conference. Both gave such valuable information that is truly ground breaking.

Since I live in an area that has not "caught up" shall we say with where medicine is heading I try to simplify what I learn to not overwhelm parents.

Two points I feel are most crucial for a parent, their children and family are:

1.) Turn off all fuses at night: avoid noise and light pollution. You are creating melatonin DURING SLEEP to detox. MORE IMPORTANT than glutathione with good restful, HEALING sleep!

2.) Eat a purely organic diet with NO GENETICALLY MODIFIED FOODS!

I think those are the two statements best to give a parent and then when they have done the two above lets talk more and delve more into getting our families the healing they need.

Why What Savages Say Matters

2008-08-14T15:49:00.000-07:00

I went with my husband on a once every six months or so date last night. We went to see the movie Dark Knight. We love to watch the previews but one of the previews struck a cord with me and brought me to tears a bit. It was a preview for a movie called Blindness based on a book by Jose Saramago. The premise of the storyline is that certain random people are struck with blindness and because it cannot be understood these individuals are quarantined in a mental institution and for fear of their disease of unknown origin that is contagious they are left abandoned to defend themselves.

This struck a cord for me as a parent because I realize that in these times we are slowly as a society becoming desensitized to the need for understanding when we have a generation of children afflicted, in growing numbers, with another illness of unknown origin: autism. There are countless examples I can give of how select members of society have begun to treat families with autism with disdain, ignorant and uneducated comments, and downright hatred including acts of inhumanity. Some of the these include a teacher who wanted to vote a child with autism out of a class, a child asked to leave church, a toddler asked to leave a plane, and another told to leave a restaurant because they were making too much noise by a patron.

When we allow these voices of inhumanity to remain uninterrupted in this country against our families and our children, others begin to slowly and methodically believe what they say. At first a person not familiar with autism but perhaps believing it not right to talk about a person in a negative fashion might be stunned to hear words like "brat" about a child with autism. But maybe they tune in again and hear " What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, you idiot." Maybe that person wonders if there is any truth to those words.

They wonder if more kids with autism perhaps are father less or have a dad not included in their life. Maybe, they wonder, they could be faking it? Maybe they do need to toughen up? This is called slowly and methodically desensitizing a nation. I assure you it's happening right now.

So getting back to that preview for the movie Blindness and connecting it to autism, I realize there are two words that come to mind: fear and unknown. That is the connection. Blindness in this movie, like autism happens of unknown origin. We are not even close to understanding why our numbers in autism have increased so dramatically and continue to increase. For this reason fear begins to abound in society. Fear of a disease of unknown origin and fear of it's complete dominance and effect on everyone and everything. Fear creates scapegoats like our children with autism blamed for the ills of society. This extends to chaos and further acts of inhumanity. Ultimately if it gets the best of us it will lead to a breakdown in society.

I believe we are in dark times and I worry about the future for my five year old son Aidan. But I truly believe as a parent, a caregiver, a friend to children with autism we have a responsibility to educate society YES but also to SILENCE the SAVAGES of the world. I believe all of us are working pretty dang hard to understand what is yet unknown in autism. Of course we are not there yet. However when others are desensitized by a message of inhumanity and hate, it is our responsibility to our children and our family to shut it down!

If we don't do it now we need not be surprised in the coming years if that fate of those in the movie Blindness is the fate of our children as well. I plead with you fellow parents, fellow citizens to take action now. Take a stand against inhumanity. Take a stand against hate. Take a stand for the future of our children.

LIAF wants to encourage parents, friends, family, acquaintances and anyone you can think of, to take action on this issue. We as parents, caretakers and friends to children with autism need to be emailing Talk Radio Network and Clear Channel network and asking for Savage to be fired. Also add if he is not immediately fired, you and everyone you know will be contacting advertisers to pull support from TRN and Clear Channel. Savage's tactics are all about 'shock' and getting more listeners.
Tactics to Avoid: By calling in to the Savage show or by writing Savage requesting an apology you are adding fuel to his 'shock jock' fire! By taking time to try and educate the ignorant Savage you are adding fuel to his 'shock jock fire!' Writing local radio stations does little because they don't make any decisions on programming. Please these tactics are a waste of your time and energy.
Tactics we Recommend: Go to the top. Ask for the firing of Savage AKA human rights violator. Threaten their advertising dollars. If emailing the below supplies no reply then start finding out who the advertisers are on the Savage show and contact them. Tell advertisers to demand Savage be fired or you and your friends will not support or buy what they sell. Threaten the money trail. That is the way to make a change here. Make sure you aren't listening to ANY network that plays Savage on their station and make sure your families and friends do the same. Everything else is small potatoes.

Email addresses are here:
customerservice@TalkRadioNetwork.com

LLowryMays@clearchannel.com

MarkPMays@clearchannel.com

RandallTMays@clearchannel.com

We moved....and then moved again

2008-08-14T15:46:00.000-07:00

We moved to Riverside but ended up moving back to our home in Rancho Cucamonga. We ended up buying a home with a broker in Riverside who then declared bankruptcy and left us hanging so we quickly relocated back to Rancho Cucamonga. We are trying to make things right with the bank now but we have to get back in their good graces.

It's a long story but the bottom line we are back in our original home in Rancho Cucamonga. I think Aidan was a little distraught with the move back since we moved in such a short amount of time. His dad and I were too because moving just is stressful period.

We are attempting to move...Yeah in this crap market

2007-09-29T20:47:00.000-07:00

Well finances have gotten the better of us and we are trying to move. I guess I should say we had a plan when we moved here in 2004. The plan did not include or have knowledge of the word autism. I was going to get a job and go to work while Aidan went to preschool. So we made massive improvements and put a lot of money into making this our dream home. Prior to Diagnosis (or PTD) we put in a pool, spa, brand new Milguard windows, wood blinds (not faux, not that I have anything against the faux!) completely changed the landscaping of this home outside and in. We thought hey it will all work out we will have two incomes in a bit. Well you know the rest. I am a stay at home mom and my son is in an in home program. I don't trust many others in my home and those that I do are family. I can't expect family to be available for a full time schedule. So we are attempting to sell in this terrible market.

We will probably rent for awhile until we decide where we want to really move. More than likely we want to move out of California. Who knows? Where services are good is really all we care about. If you couldn't tell our son is our world.

Which brings me to another point. A few of my family members or extended family have asked why don't I go to work? We could put Aidan in daycare or a preschool where he is completely segregated with only children with autism in the school. Heck here in San Bernadino county schools are being BUILT on toxic land no less to house solely preschooler children with autism. They aren't even wanted in the regular schools anymore.

I will tell you why. Aaron and I would rather go bankrupt. We would rather live on the streets. We would rather lose everything we own (and we are heading that way). We are 100% committed to our son. His well being is our primary concern and always will be. He isn't a child who can go up to a teacher and say something is wrong. He couldn't tell me if he came home and was being hurt or abused. But here in my home at his tender young age if he is upset and has a certain cry or sounds I know what it means. There is no one that is more vested in Aidan than Aaron and I. We aren't willing to settle for ANYTHING less.

Does this mean I will never send him to school or that I trust no one else? Well we do intend to send him to kindergarten when is six years old. We do intend to bring along supports in the form of shadows and aides that we know and trust. But for the next two years of his life I will be here for him and nurturing him. That's my job. If nothing else respect the fact that I am doing what I know in my heart defines ME as a good parent to my son.

Hopeful for Homeopathy

2007-08-26T21:45:00.000-07:00

Prior to Aidan's appendix bursting or I should say at the beginning of July of 2007 we began to take Aidan to a homeopath. I have been reading after meeting with this homeopath the book Hope with Homeopathy. The book is wonderful and fascinating. I really respect the rich history of homeopathy and hope for a reawakening of it's purist methadology. Anyways the goal of homeopathy isn't to dissect a person as allopathic medicine does by treating solely the gut or soley the brain or solely the immune system. Rather the whole body is treated. What our homeopath saw was that Aidan is toxic. He created remedies (now stay with me I know some of you are scawling with prejudice!) to open the exit doors of certain organs in the body. We began with targeting the liver. After Aidan's bout with the appendix (to which we think he may have had "chronic appendicitis") we focused in on the stomach, gallbladder, intestines, kidneys (big for him and me!) etc. We today focused on a virus that he targeted as one causing a skin condition where there are flesh covered bumps (Aidan started having these while in the hospital and they went away and came back). The great thing about the homeopath we see or should I say one of the great things is that he encourages us to call when things come up for Aidan. When he was going in the hospital I called him and he knew we were going on dreaded antibiotics and such. I am actually starting to see some things that are small but are a start. I won't say they are solely attributed to homeopathy but definitely they are great things. He also goes to speech therapy at a wonderful place with wonderful women and a wonderful speech teacher so she definitely gets credit! But I am hearing sounds I haven't heard in a year ("t", "s", "c", "yeah"). I am picking up that he has more receptive language. When he doesn't want to do something or doesn't want something anymore he shakes his head "No" and usually right on cue! Seriously that is huge! He has been more playful purposefully with his Daddy especially. There are more things but I see us moving in the right direction thus far. Oh and Aidan is off all prescription and supplemental medications. He does now and again take some cod liver oil or probiotics but that is all. Gotta keep the faith and the hope! That's all we can do as we keep chugging along. I have faith in my guy. I know it's all going in...everything we say and everything we do. My hope is that soon and very soon we can see that point proven with it starting to come out more and more.

Aidan's Appendix

2007-08-26T20:25:00.000-07:00

Aidan's appendix burst in July of 2007. I had taken him into the ER on Sunday the 21st of July and asked them to do a CT scan because I felt the problem was the appendix. My mother had called me Saturday evening after 8 30 PM telling me his problems were quite possibly his appendix. Aidan was in bed for the night so I set off to research the appendix. He had all the symptoms of the problem originating in the appendix. He had been extremely lethargic all week, fever daily, no appetite, not wanting to drink, constipation etc. It had begun with vomitting early on the past week. I called the Nurse on call line and they said we should take him to the ER ASAP. So when he woke up on Sunday we went in to the ER and they chastised me for not giving him tylenol or motrin. His fever went up higher than it had been to 104. Aaron and I instead used cooling methods and got his fever down. The doctor came in and instead of going with what I said to him he tested for urinary tract infection. He did xrays and urine tests and blood work. All were fine except a high white blood count around 12 (9.3 normal). I asked again to do the CT Scan and he told me he thought it was viral and that was as far as he would take it. Aidan was up and walking around and so he thought he was not in pain and therefore it was not the appendix. I explained kids with autism some have a high tolerance for pain. Aidan did intermittenly act like he was in pain but it wasn't consistent. So were sent off with paperwork saying fever or unknown origin. He did ask me to follow up with the pediatrician. We went on that Monday to the pediatrician who felt his right side of his belly area and said he isn't hunched over in pain it is not the appendix. He saw his ear was pink and said I could put him on antibiotics. I said no I didn't want to do that. He concurred with the ER doctor that it was indeed viral. I explained the thing about autism and not being hunched over in pain..aka high pain tolerance. To appease me he ordered instead of CT scan an ultrasound to be done on the following morning. Meanwhile one big reason he and the ER doctor did not want to do the CT Scan was they thought he would require sedation being that Aidan would not sit still.

Tuesday we went in early AM for ultrasound. The physician radiologist was brought in and he said there was gas covering the appendix so he wanted to admit him to do a CT Scan. He was admitted into pediatrics around 10 AM. The CT Scan was done around 1 30 PM and we tried successfully without sedation. Note: CT Scans are very entertaining. Flaps are going round and round in see through glass and it is a great show! CT Scan showed inflammation but we were told again something was covering the appendix like inflammation. They ordered immediate appendectomy to remove appendix and also exploratory surgery to discover root of the inflammation there. Surgery was completed around 6 30 PM that evening and went on for an hour. The surgeon came out and said the appendix had indeed burst. It had burst probably 2-3 days prior. It has ruptured and it was behind a flap near the gut so most was protected from spreading and making the body septic. Aidan had a bit of an absess that they were draining and drained during his stay at the hospital which turned to eight days! He was put on morphin and was out of it for a few days. He also was given IV antibiotics and also IV tylenol.

I had asked the pediatric admitting department about putting a catheter on him prior to surgery. They said they don't normally need to do this in pediatrics. Well this later posed a problem as there is inflammation near and around the bladder and he was not voiding but urine was filling in the bladder. So it stretches and leaves room for kidney infection. They cathetered him beginning the next day ordered every eight hours. But he was voiding way too much urine for his size. Normal around is 150 CC and he was voiding at one time 400, 450, even 800 CC! And the wait time was not being honored of eight hours. So a urologist was ordered in and he said we should catheter every four hours. We did this for several days hoping things would turn around and he adminstered a drug for pain and we changed the pain med to ibprofun. Then we decided to keep the catheter in overnight completely. The next day we tried again with no success on his own. So we kept it in for about 26 hours I believe and finally that Tuesday the 31st of July he successfully and with much pain (eight days after surgery!) urinated on his own. We were all overjoyed for the pee! He was discharged after he napped around 7 or 8 PM that evening.

After releasal from the hospital Aidan was on oral antibiotics for another week. After these finished stims really seemed to increase. Lots more toe walking, eye stims/bulging, rubbing knuckles together etc. We saw the surgeon again for follow up a week later and I was concerned about pain because Aidan kept trying to touch the scar and he said well he just touched it and Aidan didn't wince in pain...obviously nothing learned on his part.

Oh and the scar...it's huge. Poor guy! I feel awful. The surgeon prior to surgery said it would be a few pokes that would heal up really nicely. Yeah NO...that is not at all what it is. It is one long gash across his small abdomen.

It was a long and painful chain of events. Near the end I could tell Aidan was growing depressed. He and I both were in a depression. Aaron his dad is a hero. He stayed by his side every night and most of the day. Aidan was very attached to him being there. Most nights though he had his own bed he slept with his son in bed. I loathe hospitals and definitely can't sleep in them with nurses coming in every few hours. This didn't bother Aaron at all. Sometimes it helps being such polar opposite in personalities for partners. I try to remember daily how much I honor and respect my husband for being such a wonderful Daddy to our lil man.... and to remember to show him that too!

No "Autism Epidemic"

2007-01-03T10:13:00.000-08:00

David Kirby

01.02.2007
There is no autism epidemic

It's been nearly two years since the release of my book, "Evidence of Harm, Mercury in Vaccines and the Autism Epidemic - A Medical Controversy," and I continue to be vilified by critics who insist that mercury does not cause autism, that autism is a stable genetic condition, and that it cannot be an "epidemic."
I am going to declare a New Year's truce, and announce that my critics are 100 percent correct.
This year, I hope we can ALL agree on one thing: There is no autism epidemic.
Among my most spirited and articulate detractors is a group of adults with autism who belong to a movement that refers to itself as the "neurodiversity" community.
These adults argue passionately that autism is neither a disease nor a disorder, but rather a natural and special variation of the chance genetic imprint left upon human behavior. Most of them, I believe, have what science calls "Asperger's Syndrome," or very high functioning autism.
From their eloquent and well reasoned point of view, autism has no "cause," and it certainly requires no "cure." To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.
It's like saying that left-handers or gays are deviant and need treatment - something that reasonable people stopped doing years ago.
So maybe autism really is just an odd genetic peculiarity that yields atypical people whose own set of talents and gifts can lead to perfectly happy and fulfilled lives, with little or no dependence on others for their survival.
If that's the case, then autism has always been with us at some steady, but largely overlooked rate. Growing awareness and better diagnostics have certainly helped us identify and count more people with the condition, who might have been mislabeled as "quirky" or "nerdy" a decade ago.
But if that's autism, then the kids that I have met suffer from some other condition entirely. When I talk about "curing" autism, I am not talking about curing the "neurodiverse."
I am talking about kids who begin talking and then, suddenly, never say another word.
I'm talking about kids who may never learn to read, write, tie their shoes or fall in love.
I'm talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can't say what or where it is.
I'm talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of "autism" was pretty).
I'm talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.
I'm talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.
I'm talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don't even realize it when their dad comes home from work.
These are the kids I want to see cured. And I don't believe they have "autism."
Scientists tell us that 1-in-104 American boys are currently diagnosed with some form of autism spectrum disorder. But the mildest, "high functioning" forms of autism have seemingly little in common with the most severe or even moderate cases.
My hunch (and yes, that is all it is) is that most of these kids do not have "autism" at all, and it's probably time we started calling it something else.
American kids are in huge trouble. One in six has a learning disability. Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers. And little of this is due to "better diagnostics" or "greater awareness."
It can only be attributed to radical changes in our environment over the last 10-20 years. There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.
Mercury remains a logical candidate for contributing to "autism spectrum disorders," either alone or in combination with other environmental insults. Mercury exposure can kill brain cells. It can cause loss of speech and eye contact, digestive and immune dysfunction, social withdrawal and anxiety, and repetitive and self-injurious behaviors.
So maybe we should leave the autistics in peace and focus on these environmentally toxic kids and what it is that ails them.
Maybe what these kids have is not autism, but something like, say, "Environmentally-acquired Neuroimmune Disorder," which we could call E.N.D. (Great slogan: "Let's End E.N.D.).
Maybe that would explain why a recent CDC-funded study of the San Francisco Bay Area showed that kids with "autism" were 50% more likely to be born in neighborhoods with high levels of airborne toxins, especially mercury. If a second study underway in Baltimore yields similar data, it will be that much harder to defend the "better diagnosis" argument, (other studies have shown an association between autism rates and proximity to coal-fired power plants).
So maybe what we have here is just a semantic failure to communicate. Columbus thought he had met "Indians," and we only recently began to use the term "Native American."
Columbus was not in the Indies, mercury doesn't cause autism, and there is no autism epidemic.

Onto the Next Step

2006-12-20T15:06:00.000-08:00

Well mediation did not go so well. I put on my green sweater with my Christmas pin in the hopes that people would be softened. I displayed two pictures of my beautiful son with one at California Adventure with his father. It is a great picture as father and son are holding onto one another (son in a Buzz Lightyear costume as it was Halloween and my birthday) and gazing into eacher's arms both laughing and smiling at one another. The other was with Aidan smiling as he picked up snow at the LA County Fair this year. No one acknowledged my pictures and certainly no attention was paid to my desperate display of Christmas cheer. To put it plainly nothing was resolved. I really can't go into any more detail than that. So we press on to the next step where I hope soon issues will soon be resolved.

Gut Bacteria...Obesity....AUTISM????

2006-12-20T14:59:00.000-08:00

My son has loads of bad bacteria and little to no good bacteria and I am "beyond the ideal weight" and have been for many years (I loathethat word obese and even worse morbid.). On another note I fear yet again a "scapegoat" to blame autism on....obesity/fat...guess women that are "beyond the ideal weight" should be used to this as it is the "last allowable prejudice" in our society.

Gut Bacteria Tied to Weight Gain, Study Finds

By Rob Stein

Washington Post Staff WriterWednesday,

December 20, 2006; 4:08 PM

The guts of obese people are teeming with a distinctive mix of bacteria that seems to make them prone to gaining weight, a startling discovery that could lead to new ways to fight the obesity epidemic, researchers reported today.

Obese people have more gut microbes that are especially efficient at extracting calories from food, the researchers said, and the proportion of these super-digesting organisms ebbs as they lose weight. Moreover, when the scientists transplanted gut bugs from obese mice into lean mice, the thin animals start getting fat, providing more support for the provocative theory that the bacteria that populate the gut play an important role in regulating weight.

"There appears to be a link between obesity and the type of bugs in your gut," said Jeffrey I. Gordon of Washington University School of Medicine in St. Louis, who led the series of experiments being published in tomorrow's issue of the journal Nature. "The difference in the structure of microbial ecology of our gut may set us up for susceptibility to obesity."
Gordon and his colleagues stressed that more work is needed to explore the findings. And they cautioned against trying to manipulate "gut flora" with antibiotics or microbe-containing "probiotic" pills sold in health food stores. But if the findings are confirmed and better understood, they could lead to profound new insights into one of the world's biggest health problems, they said.

"In the future, we could potentially manipulate the structure and function of these microbial societies as a new approach toward preventing and treating obesity," Gordon said.
The findings produced enthusiasm and caution from other researchers. Some praised the work for possibly offering a long-sought alternative explanation for the obesity epidemic. Perhaps some change, such as a food additive or antibiotic use, has caused a fundamental shift in gut flora, making it easier for many people to gain weight.

"This is very exciting," said Barbara Corkey, an obesity researcher at Boston University. "We don't know why the obesity epidemic is happening. People say it's because of gluttony and sloth. I think there must be something else. It's exciting to see some work being done on alternative explanations."

Others suspect that if gut microbes do play a role, it's probably relatively minor.
"This is extremely interesting," said Hans-Rudolf Berthoud of the Pennington Biomedical Research Center in Baton Rouge, La. "But lifestyle and the environment are still the major factors in the obesity epidemic."

On a broader level, the findings highlight the symbiotic relationship humans maintain with the trillions of microorganisms that populate our bodies, Gordon and others said.

"This strengthens the notion that the indigenous organisms in the human body are probably intimately involved in our health," said David A. Relman of Stanford University. "The ways they are involved remain unclear, but this underscores the idea that it behooves us to figure it out."
Scientists have long known that the human body is crawling with germs, primarily bacteria, which cover the skin and inhabit every orifice. By some estimates only one out of every 10 cells in the human body is actually human. These organisms perform a host of functions, especially in the gut, where they help digest food.

"There's growing interest in the idea that humans are more than just human cells," said Martin J. Blaser of New York University. "These cells are not just passengers. They are part of the human metabolism."

To explore the role of the organisms in weight regulation, Gordon's team first compared the gut flora of 12 obese people to lean subjects. The obese tended to have significantly greater proportion of one of the two main types of bacteria found in the gut, known as Firmicutes, than the other, known as Bacteroidetes.

Next, the researchers spent a year meticulously measuring the gut flora of the obese volunteers as they tried to lose weight by eating low-calorie diets that restricted either their fat or carbohydrates. As they lost weight, the proportion of Firmicutes fell and the proportion of Bacteroidetes rose, the researchers found.

When the researchers conducted detailed molecular analyses of the two types of bacteria in the laboratory, they discovered the Firmicutes were much better at extracting calories from food.

Moreover, when the researchers examined the gut flora of obese laboratory mice they found a similar pattern in their balance of Firmicutes to Bacteroidetes. And when they transferred gut flora from obese mice to sterile mice devoid of gut flora, the recipient animals tended to gain weight, confirming that pattern was associated with weight gain.

"This attribute of being able to harvest and store more energy appeared to be transmissible," Gordon said. "For the first time, we see that there is a correlation between the microbial gut ecology and the obese state."

Among other things, the findings could help explain why it becomes harder and harder to lose weight as people get fat, Gordon said.

"That's part of the pathology of obesity. When you shift the amount of fat tissue, the amount of energy you can harvest becomes somewhat greater, and that's going to fuel the obese state," he said.

The researchers acknowledged that the difference in the number of calories extracted by the microbes is relatively small. But over time even a small differential could be significant, they said.

Many questions remain, however. It's unclear what determines the make-up of a person's gut flora -- it might be the microbes they pick up from their mothers; it might be their exposure to antibiotics. It's also unclear how fat tissue and gut flora might communicate, and whether the change in gut bacteria causes or is a result of the weight loss.

Despite those and other questions, scientists said the finding are sure to inspire more investigation.

"They open up a completely new hypothesis," said Randy Seeley, an obesity researcher at the University of Cincinnati who wrote a commentary accompanying the research. "There are a lot of hurdles here that we have to deal with in terms of our basic understanding. But it's fascinating."

Autism Speaks and Cure Autism Now merging

2006-12-11T19:40:00.000-08:00

I am very happy to be involved with the efforts of Cure Autism Now and with the recent merge I think this is good news for the autism world. The Combating Autism Bill has been passed by the Senate and the House and awaits the President to sign it. I am hoping for the Christmas holidays we will find this bill has finally passed and autism will get the long awaited attention it needs in our country.

Please note on December 20, 2006 President Bush did sign the Combating Autism Bill. Hooray!!!!

Fraternity Guys

2006-12-11T19:23:00.000-08:00

We had a fraternity come out to PUMP IT UP this past month to play with the kids. I was half expecting huge bully looking guys. I was pleasantly shocked when I saw them playing with the older kids and shielding the little ones when they got too close to danger. They were a great group of guys and we were grateful to have them out. One of my son's therapists is pledging for this fraternity and they do community service events as part of their fraternity (who knew?). So he agreed to have the guys do this for us and we will try to have them out every month. I think all the kids there benefitted from the group of guys there. Aidan couldn't stop following his "teacher" around. It was too cute!

Heroes

2006-12-11T19:20:00.000-08:00

Aaron and I love watching Heroes. We secretly like to think children with autism may have special powers which we are all not aware of yet.

Anyone else like that show? Do you share our illogical reasoning? Come on I know there are a few of you out there!

From one end of the spectrum to the other

2006-12-11T18:55:00.000-08:00

Aidan was diagnosed with mild autism (reflected in his CARS score of 32) approximately a year ago. It was on December 1st. December used to be my favorite month of the year. Last year we were in a constant state of shock and also sadness over something we felt "lost." This December Aaron and I felt a resurgence of that loss as we go through our day to day lives this month. We have started going on many family outings especially on Sundays (NO ABA!!!). We have a season pass to Disneyland and go there. It is beautiful for the holidays. We have gone to the mall. We try to get out and have a good time as a family. Somedays, and especially this month, it is difficult and trying for us. We have to count our blessings though too. Aidan did help decorate our family tree and showed a satisfaction in himself as we praised his efforts. Then he went to my parents and (after having not taken a nap) did not help or want to help decorate their tree this past weekend. He cried and wanted to go watch television in the other room instead. Feelings of joy, feelings of sorrow. Our little nephew less than age two is very easy to engage and play with and get a back and forth imitation with. I can make sounds with my mouth and he will imitate with a ready smile on his face. I feel love and affection and happiness doing this. Then I remember this kind of interaction is almost completely non existent with my own son. Again feelings of joy and feelings of sorrow.

A further shock came to us the latter part of this year as we have been told Aidan is now considered moderate to severe in his autism diagnosis. We had taken comfort for many months in the fact that Aidan had "mild" autism. This is not the case. Aidan has a severe expressive and receptive language disorder in addition to autism. His EEG's have come back abnormal twice and they want to do another for three days in a hospital! We will have to see what testing shows and whether or not to add an additional med.

It's very difficult...even today...to see neurotypical children on a constant basis. It is like pouring salt on my wounds. It is very difficult (though I am so very happy and thrilled at the same time!) to see improvements in other ASD children occur so easily and with little or hardly any interventions. I have been researching Autism since late summer of 2005 and I don't feel we have made any wonderful strides! It is very painful and personal. It feels like I am a failure and most definitely a failure as a mother. I have researched and fought for services representing traditional therapies. I have done a majority of this on my own with no professional help (the upcoming mediation does involve an attorney however). I have researched biomedical interventions ranging from the brain, the gut and the immune systems. I have emailed physicians and parents all over the world for answers. Most have actually been kind and began a coorespondance with me believe it or not. I thought I would be closer to helping my son than I am today. This is my full time job. It feels like if I fail at what I am trying to accomplish (see statement near the top of my page) I have failed my job, my family and most importantly my son. I don't know if many people outside of my world get that. It's a struggle and I am at odds with myself to go forward in research, being a Mom to my son, wife to my husband and at peace with myself.

Direction...biomedically

2006-12-11T18:34:00.000-08:00

Direction is something I have lacked this last couple of months. I see my son has issues with major leaky gut and gastrointestinal upset. He lives between constipation and diahrea constantly. His eyes have major bags under them. I have known for some time that his GFCF diet is not enough. I have researched diets that take it further and the two of significance for children on the spectrum are SCD and Body Ecology. I have decided to go forward with Body Ecology. This is difficult because it is making meals that are 80% vegetable and 20% protein or four specific grain products. The diet calls for cultured foods including vegetables and young coconut kefir with limited sour fruit. This diet was originally intended for people with chronic candidas. It is rich in beneficial bacteria and the foods are anti fungal in nature. It is very healthy and very much not how our family normally eats. It will be difficult but likely beneficial to all.

Aidan is currently on a few prescription medications including valtrex, zoloft as well as nizerol. We were told nizerol should help with yeast, however I recently included capryl which is caprylic acid for about three days and he had major die off. The professional we see really doesn't know GI issues as well as I would like. He choses to zero in on the immune and viral systems. I would like to take Aidan to Thoughtful House to see Dr Kartzinel and maybe to be scoped by Dr Krigsman. We also have an appointment with Dr Ellis this week to look into testing for IVIG. We see a Dr Barrett currently as a DAN physician and have been doing testing on yeast, bacteria, neurogenomics profile etc., with her. We will try and see her this week as well to go over recent labs and discuss direction.

I still have high hopes but I am somewhat shifting my direction right now. I want my son to be healthy. I don't believe he is right now. If he isn't healthy, isn't feeling well...how can he be expected to learn well? We have ABA in place and it is going well with Lovaas. Aidan is beginning to make real strides in programs. Imitation and pre language skills (as well as language) continue to be the main challenges. My hope is that once we can get him healthy he will be able to have that motivation to attend and learn to the best of his ability. I know in my heart we have NOT done everything we can for Aidan. We have a ways to go. I am in a hurry to get there but trying to take things one day at a time. As one wise friend writes...Recovery: It's a marathon, not a race!

Mediation

2006-12-11T18:30:00.000-08:00

Well it has been a long while since I have posted. We had another IEP in September and issues were not resolved. The main issue we have is that the school wants to transition Aidan from one vendor to another and I do not think this is a wise choice. I strongly fear regression and major difficulty on Aidan. The agency we are vendored with is vendored with our SELPA and school district and yet they want another for whatever ($$$:)) various reasons they have. We will go to mediation on the 18th. They have agreed to allow us to continue at Casa Colina for speech and occupational therapies. We had a resolution session over the phone and this is when they agreed for these services. The regional center has authorized me to retain a lawyer and they fund the retainer fee. This is only if the lawyer agrees to take the case. And yes he did. He let me know he only takes cases he has a very strong feeling he will win because that is how he makes his money. So he will accompany me to mediation and take over arguing the case. Wish us luck!

Further Proof....MMR/Chickenpox damage to our babies

2006-07-07T12:44:00.000-07:00

http://www.upi.com/ConsumerHealthDaily/view.php?StoryID=20060630-021004-3424r
The Age of Autism: Anna's last days -- 1
By DAN OLMSTEDUPI Senior Editor
WASHINGTON, July 6 (UPI) -- On April 26 a Scottish child named Anna Duncan attended a party where two children had chickenpox. Nine days later she got her routine measles-mumps-rubella vaccination. Four days after that she developed classic chickenpox symptoms -- spots and fever.
One week later, on May 14, Anna was dead from an apparent seizure. She was 17 months old.
Now her father, John, is struggling with the sudden loss of a bright, lively child -- and increasingly suspicious that the MMR shot during an apparent chickenpox infection triggered her death.
Those suspicions deepened after he came across Age of Autism's recent investigative series, Pox, which found that giving MMR and chickenpox vaccines at the same time might raise the risk of autism in a susceptible subset of children. By happenstance, the series began the week before Anna's exposure to chickenpox and ended the week after her death.
In Anna's case, Duncan believes the chickenpox she caught at the party suppressed her immune system to the point that the measles virus from the MMR triggered a fatal seizure.
"I feel now that I have an answer to our daughter's death," said Duncan, of Cardrona, Scotland. "What I'm going to try to do with this is force a fatal accident inquiry, because there is a potential scenario here where it could happen again, and if (they) realize that this is a developing story, it can only get bigger."
The Pox series centered on several autistic children in Olympia, Wash., whose families had problematic histories with chickenpox and related herpesviruses. All of the children got the MMR and chickenpox vaccines, in most cases at their 12-month checkups; two of the children were in Merck & Co. clinical trials of investigational chickenpox vaccines in combination with the MMR.
John Duncan said that like the Olympia families, he also had unusual reactions to viral infections and experienced a monthlong outbreak of pox-like spots just after Anna was born. He took photographs at the time to document the spots, which spread diffusely from his abdomen.
"I believe her response to the MMR while infected with chickenpox was due to her genetic makeup from myself," Duncan wrote in a posting on the British Web site jabs.org.uk.
"Anna's normal response to a benign childhood illness, for which recovery was a formality, was interrupted by the MMR vaccine, which due to her understandable immunosuppression resulted in the replication of the measles virus -- 'virus replication,' an accepted and understood medical event in relation to vaccines."
It will be weeks before laboratory tests confirm whether Anna had chickenpox and health authorities rule on cause of death. But authorities in both Britain and the United States assert there is no association between the vaccines and serious health problems. They say the real risk is foregoing vaccinations based on unfounded fears.
The Daily Mail reported in June that "Britain is now in the grip of the biggest measles outbreak since the vaccine's introduction in 1988. Doctors have reported hundreds of cases of measles since January in just three areas of the country, including the death of a 13-year-old boy."
Last week "a group of Britain's leading pediatricians and childhood vaccination experts ... warned that more children will die unless a line is drawn under the autism and MMR vaccine controversy," according to Britain's Guardian newspaper.
"In an open letter, 30 scientists, including some of the country's most eminent child health experts, say that an overwhelming body of evidence shows the vaccine is safe. They add that urgent immunizations are necessary to prevent potentially devastating outbreaks among schoolchildren."
The MMR vaccine Anna received was Priorix, manufactured by GlaxoSmithKline. Chickenpox vaccine is not routinely administered in Britain; in the United States it is recommended by health authorities for all children beginning at age 12 months.
John Duncan provided this sequence of events leading up to Anna's death.
Wednesday, April 26 -- Anna attended the party with her mother, Veronica, where one child was getting over chickenpox and that child's younger sister had all the symptoms of chickenpox.
Friday, May 5 -- Anna got her MMR shot at Haylodge Health Centre, Peebles, Scottish Borders; her mother questioned whether Anna's runny nose and exposure to chickenpox was a cause for concern. The healthcare worker said it was not.
Tuesday, May 9 -- Anna developed signs of chickenpox with spots appearing and a slight fever. This developed into what appeared to be classic chickenpox.
Sunday, May 14 -- Anna died around 9 a.m. with what appeared to be a seizure, with evidence of blood on her lips and on sheets in close proximity to her mouth.
"When Anna had chickenpox we gave her (a fever reducer) to bring her temperature down when it spiked," John Duncan said. "Her temperature according to her mother, who is a nurse, seemed to stabilize on the Saturday night through to Sunday morning, but Anna became restless early on Sunday morning and had two very smelly nappy (diaper) changes. A tired mother put Anna in her cot at around 6 p.m. as she seemed to be more contented on her own.
"Anna's death came as a major shock to us all because at no time did we think that she was going to die. The seizure would have been undetectable in the circumstances. I was with (son) Cameron that morning downstairs because I thought Anna had turned the corner."
Duncan said a doctor who came to the house to confirm the death told his wife it appeared "Anna had chickenpox." She may also have started developing new spots characteristic of measles, he said.
"I would say at time of death there were more measles-like spots appearing around her neck. But I cannot be too sure."
Duncan asked on the Jabs site: "Could this scenario cause autism? Is there a genetic susceptibility in some children to deal with the herpesvirus in a different way to the normal response, making these children more at risk to a bad reaction from MMR at the time of herpes infection? ...
"Had Anna survived her bout of seizure 10 days after her MMR, her brain very possibly could have been damaged and a diagnosis of autism eventually given."
--
Next: Chickenpox and measles -- a troubling combination.
--
E-mail: dolmsted@...

Land of Limbo

2006-06-26T00:13:00.000-07:00

Hello all. It has been awhile since I posted. This is with good reason. Our IEP was on June 1st and continued on June 6th. I did not sign the IEP. I got a letter from my coordinator at the regional center that day (June 6th) stating the services of speech and occupational therapy ended that day and that ABA continued funding until the end of June. She told me this was set in stone and for sure those dates are what they are. However she attached to the letter an appeal form. After the IEP I went home and read this and it stated as you appeal a decision all services stay in place. You have 10 days to get this in (the appeal) and request a fair hearing. So all services are still in place that we have with regional center. I have informal mediation with regional and some other steps before a hearing at the end of July. As far as the school district I am getting independent speech and psychological/behavioral/cognitive testing done. I requested this in a formal letter and fax to the school district....at public expense. Though I will have to cover the cost up front. More than likely the case with the school district will go through a series of steps as well including dispute resolution, mediation, and possibly due process (in front of a judge with lawyers). I don't want to get ahead of myself and I don't want to disclose too much at this point. I just wanted to give an update. I was hoping for the best and thought it would have been a lot easier than it was. Unfortunately I was incorrect in my assumptions. Bottom line is our situation is not unique.If one wants services a fight is usually warranted. The difference is, those people usually have money. We don't. Aaron and I discussed this and we wholeheartedly believe this is worth going into debt for. This is worth losing our home for. Our son is worth all we have and more.

Measles, Mumps, Rubella, DtaP, Hib, Varicella...oh my!

2006-06-14T13:49:00.000-07:00

The Age of Autism: But is Wakefield Right?
By Dan Olmsted for UPI.
http://www.washingtontimes.com/upi/20060612-023341-6204r.htm

Dr. Andrew Wakefield, the British gastroenterologist who first raisedthe prospect of a link between the measles-mumps-rubella vaccine and autism,is being pursued by British medical authorities. According to the BBC: "The Independent newspaper reports that theGeneral Medical Council will accuse Mr. Andrew Wakefield of carrying out'inadequately founded' research. Vaccination rates fell sharply after DrWakefield questioned the safety of MMR, raising fears of a measles epidemic.His initial Lancet paper has since been disowned by the journal." Let's put aside the issues surrounding the Lancet paper and concernsabout a measles epidemic and go straight to the heart of the matter: Doesthe MMR cause autism? In other words, is Wakefield right? After looking into the topic for more than a year, I'm very concernedthat he may be -- that, especially in children whose immune systems havebeen rendered susceptible by any number of possible exposures, the combinedlive-virus vaccine has its fingerprints all over numerous cases ofregressive autism. Until researching the seven-part Age of Autism series in Olympia,Wash., that concluded last month, I would not have said that. But when youencounter case after case of perfectly normal children regressing afterlive-virus vaccinations -- in this case, the MMR in close proximity to thechickenpox shot -- you have to keep your options open. The families in Olympia noticed a common thread: They had unusualhistories of chickenpox and other herpesviruses in their families; theirchild got the chickenpox and MMR shots in close temporal proximity, often atthe same 12-month office visit when both are first recommended; and thechild subsequently was diagnosed with regressive autism. Despite the sweeping assurances that there's no link between the MMRand autism, no one seems to have looked at whether such a family history ofsusceptibility to viruses used in vaccines might raise a risk factor. Callme hypervigilant, but I would have expected that to be rigorously reviewed along time ago. Two of the Olympia children, in fact, were in small trials at age 12months of chickenpox and MMR vaccines. One of the vaccines, called ProQuad,combines the MMR and chickenpox, kicking in 10 times the standard amount ofchickenpox vaccine to overcome the "immune interference" that can occur whenlive viruses interact. Such interference is at the heart of Wakefield's concern about thecombined MMR vaccine -- that the viruses suppress the immune system in sucha way that weakened-but-live measles viruses can set up house and trigger adelayed neurological infection: autism. And measles is not benign -- that's why there's such a push tovaccinate against it. In a small percentage of cases, the wild, or naturallyoccurring, infection can lead to delayed brain damage and death. It's a neurotoxic virus, in short. Wakefield's question and concern iswhether in some cases the live-virus vaccine is neurotoxic, too. Not such a wild idea, really, and listening to him talk makes you hopeto God the vaccine manufacturers and regulators are a lot smarter than hemakes them sound: "What alarms me about the cavalier approach of the industry andeverybody else, the regulators, to these viruses is they presume the wildinfection to be nasty and the vaccines to be innocuous -- that they canmanipulate something that is biologically highly intelligent and exploit itto their advantage. "And they can't. The viruses don't behave like that and they neverwill. They merely come back to haunt you as something different." Multiple epidemiological studies have allegedly ruled out thischilling scenario as a factor in autism -- the Institute of Medicine callsit "theoretical only." But epidemiology is only as good as its data and itspractitioners, and well-known for its potential pitfalls and flaws. Whatconcerns me is, if the epidemiology is wrong, preventable cases of autismare going to keep happening till the cows come home. Recall, also, that Wakefield never suggested banning the measles,mumps or rubella immunizations. He suggested separating them and giving thema year apart. Especially concerning are the stories that parent after parent tellsabout physical illness after the shots, followed by autistic regression.It's kind of freaky, really, the way they keep popping up. After finishing the Pox series, I attended the Autism One conventionin Chicago and happened to be interviewed by a Web-based documentaryfilmmaker. During a break, I asked how he got involved. He told me hisdaughter got the MMR, came down immediately with a 103-degree fever andregressed forthwith into autism. "It's like someone took out her good brain and replaced it with a badbrain," he said. It was that immediate. I had another conversation with the mother of fraternal twins who toldme this story: Both sons were scheduled to get two shots -- the MMR andanother vaccination -- on the same day at the same office visit. But -- oops -- the healthcare worker gave the first child two MMRshots, not the MMR and the second vaccine. That child soon developed autism;the second one didn't. And I spoke recently with a Texas man whose son got the MMR in 1993;the injection site swelled up to the size of his father's fist; he hadseizures at the dinner table that night, and within days was spinning,flapping, chewing wood and not talking ever again. You get the picture. "Anecdotal evidence." But you have to wonder howmany of these stories -- one is tempted to say, bodies -- must pile upbefore the medical authorities go back and take a fresh look at the issue. This blithe disregard for case histories -- for what parents, thesupposed bedrock of our "family-friendly" society, say -- is one of the mostappalling features of the current climate surrounding autism research. Infact, Sen. Joseph Lieberman, D-Conn., has talked publicly of forcing theCenters for Disease Control and Prevention, which sets the childhoodimmunization schedule and stoutly rejects a link with autism, to actually goout and interview some of these parents. One person who is making things awkward for the authorities is Dr.Peter Fletcher, another British ne'er-do-well -- or, to use his officialtitle, the former chief scientific officer at Britain's Department ofHealth. As I noted in a column earlier this year, the Daily Mail reported: "Aformer British government medical officer responsible for deciding whethermedicines are safe has accused the government of 'utterly inexplicablecomplacency' over the MMR triple vaccine for children." The official, Dr. Peter Fletcher, became an expert witness forparents' lawyers, which of course creates a competing interest that needs tobe factored in. But Fletcher said his new role gave him access to documentsthat deeply concerned him. "There are very powerful people in positions of great authority inBritain and elsewhere who have staked their reputations and careers on thesafety of MMR and they are willing to do almost anything to protectthemselves," he said. Gosh, this is starting to get interesting, and not just for AndrewWakefield.

And the band played on.......

2006-05-30T17:52:00.000-07:00

Scientists fear MMR link to autism
By SALLY BECK, Mail on Sunday 09:52am 28th May 2006

New American research shows that there could be a link between the controversial MMR triple vaccine and autism and bowel disease in children.
The study appears to confirm the findings of British doctor Andrew Wakefield, who caused a storm in 1998 by suggesting a possible link.
Now a team from the Wake Forest University School of Medicine in North Carolina are examining 275 children with regressive autism and bowel disease - and of the 82 tested so far, 70 prove positive for the measles virus.
Last night the team's leader, Dr Stephen Walker, said: 'Of the handful of results we have in so far, all are vaccine strain and none are wild measles.
'This research proves that in the gastrointestinal tract of a number of children who have been diagnosed with regressive autism, there is evidence of measles virus.
'What it means is that Dr Wake-field's implication is it may be coming study is correct. That study from the MMR vaccine. If that's didn't draw any conclusions about the case, and this live virus is specifically what it means to find residing in the gastrointestinal measles virus in the gut, but the tract of some children, and then they have GI inflammation and other problems, it may be related to MMR.'
The 1998 study by Dr Wakefield, then a reader in gastroenterology at the Royal Free Hospital in North London, and 12 other doctors claimed to have found a new bowel disease, autism enterocolitis.
At the time, Dr Wakefield said that although they had not proved a link between MMR (measles, mumps, rubella) and autism, there was cause for concern and the Government should offer the option single vaccines - instead of only MMRs - until more research had been done.
The paper - and the confused interpretation of its findings - caused uproar and led to many parents withdrawing their co-operation for the triple jab. Ten of the paper's authors also signed retractions on the interpretation but stood by the science.
This is the second independent study to back up Dr Wakefield. In 2001 John O'Leary, Professor of Pathology at St James's Hospital and Trinity College, Dublin, replicated his findings.
Last night Dr Wakefield said: 'This new study confirms what we found in British children and again with Professor O'Leary. The only exposure these children have had to measles is through the MMR vaccine.
'They were developing normally until they regressed. They now suffer autism and bowel disease.
'The Department of Health and some of the media wanted to dismiss our research as insignificant. The excuse was that no one else had the same findings as us. What they didn't say is that no one else had looked.'
A spokesman for the Department of Health said they had not read the American report, but added: 'MMR remains the best form of protection against measles, mumps and rubella.'

************************************************************
All I have to add to this piece is evidence in my own son. I am not certain if my son truly has "regressive autism." He was developing normally and meeting all of his milestones each month. He was not really babbling or orientating to his name that well. But at 8 and 10 months he did repeat and babble "MA MA" and "DA DA." I do know these sounds of babbling went away when he was 12 months of age. At his 12 month vaccination visit to "lovely" Kaiser Permeanente he had: MMR, DTaP, Hib, and Varicella (chickenpox). His body had been insulted less than four months prior with a bout of roseolla. He had been sick for a week about a week prior to his 12 month visit. It has been my opinion for some time that "viral" issues are definitely at the heart of my son and how autism has effected him. I think there is most definitely a genetic link but I believe viral issues "pulled the trigger" on his resulting autism. Looking back at his 12 month visit I think it is absolutely ludicrous and outrageous to put that many viral assaults on a 12 month old baby....any baby...with autism or without! I think it is crucial that our country revamp our vaccination schedule. There is no reason a child less than 18 months of age should have 22 vaccinations (and that is not counting all the viral insults!!). There just is NO REASON!

My alternative is not to do away with vaccinations. I agree with Dr Wakefield above that MMR should be broken up AND definitely not combined with the myriad of vaccines my son was exposed to along with the MMR. The question is how long will our governmental agencies wait to do this with proof in front of them? How many of us will continue to sit on the sidelines and allow our children and children's children future insult? Furthermore, how many children will be hurt as we wait?

Pump It Up

2006-05-27T23:00:00.000-07:00

Pump It Up Parties for Families with Autism. We have a Pump It Up Party locally for families with autism every fourth Thursday evening of the month locally. I decided to head this event myself and we had our first event last Thursday. We had a great turn out! The kids had fun bouncing and sliding down slides. We have the place all to ourselves. I had the opportunity to speak to parents and get to know a few of them. Great time for all!

LIFE with Lovaas

2006-05-12T10:22:00.000-07:00

We officially began with Lovaas April 3rd but sessions twice a day did not truly start until April 13th. I have been in the room (or Aaron when he is home) during each session and do a few drills on Aidan's off days of Sundays. His schedule is pretty intensive but he is doing very very well. Progress is made everyday. I see his receptive language beginning to emerge. He has started returning to sounds he used to make over a year ago ('Chi' like chia pet, 't', 's', and 'e'). The therapists that come into our home are really exceptional people. They take on so many professions in one. They are scientists taking data for what they do. They are teacher teaching my son new skills. They are playmates playing with my son (either directed by them or Aidan) on the floor in between drills. They are also motivators encouraging my son in words or in finding out what key things will get his attention and keep him 'attending' as they say.
I had such a strong fear of ABA and now I see if it is done correctly, all areas of development and behavior can be addressed. I am highly impressed with the genuiness of those working with me.

The first skills we have been working on have included simple commands such as "Come Here." Aidan is doing spectacular with this. We also do some matching with an object such as socks, shoes, spoons, cows. He is usually 100% on this skill! He does non verbal imitation with an object. They command "Put in" and put a block in the bucket and he does it then possibly stacking a block on another. He does this well even with other things on the table to make sure he is "attending" to the task at hand. We also do a play session with a circular round blocks with color that he is to correctly put in. This has been a little difficult on him when pieces are mixed around. They put a chip under a cup to see if he picks up the correct cup. Now they move the cup around in front or back and he has been excelling pretty well in this. One other drill is non verbal imitation. This has been pretty difficult for him but he is coming along. We take him to the living room and put on a favorite show and pause it. The instructor commands "Do this" and claps. Aidan tries to grab the instructor's hands to clap them. Now he holds out his hands as if he is going to clap. Usually an instructor will tap on his wrists or prompt his elbows and he claps. He is reinforced by watching a clip of his favorite show. This is definitely coming along and highly motivating for him. We don't watch this particular show in our spare time and it is only for this drill.

This is a lot of work and taxing on my son and on Aaron and I. Do we think it necessary? Yes. Do we think our son will benefit from this? Definitely. We already see it. Will we fight to keep it? Yes, tooth and nail. Our IEP for the school district is June 1st and I will keep you posted. I am hoping it is a smooth transition but only time will tell.

The Beginning of the Beginning

2006-03-30T22:43:00.000-08:00

I am so very very stressed and literally sick right now. I have a sore throat and cold. My immune system is shot. Anytime my son gets a cold or fever, I am inevitably hit with it. AND it lasts longer when I get it. His recovery is so quick too! Part of it might be him and part of it is the stress of what is to come. We begin ABA on Monday. Our last day of preschool was this past Tuesday. We had a home visit to make up for a Thursday preschool visit. In order to get ABA we were forced by our regional center to end our preschool service. This is difficult but necessary. The preschool was six hours a week and ABA will begin at 20 hours a week. 20 hours a week! My work time was 20 hours a week while I was in grad school. I can't imagine this. And the most difficult thing to imagine right now is this is possibly only the beginning. More than likely the hours will be increased--to 30, 35, maybe even 40! It seems insane to me! Other parents seem to find it perfectly natural and when I question this they think it's exactly what their child needs. I cannot even fathom how my son will do for four hours a day, let alone six or possibly eight!!!

Though this is not the real reason I am stressed. My son is particularly hard headed. He likes things his way or the "highway." He must get this from his father because this is SO.. opposite of myself (LOL). I worry about this adjustment. I worry about the crying. I worry about him without me in another room with someone he doesn't know. I worry this won't work and we will have nothing left we can do. Worry worry worry. This is what I do best. And then a song comes on the radio. Pastor Chuck Smith of Calvary Chapel ends every sermon with his jolly voice singing beautifully off key and delightfully so. He sings a song I remember from my youth. I will cast all my cares upon you, I will lay all of my burdens down at your feet. And anytime I don' t know, what to do...I will cast all my cares upon you. The tears begin to stream. I begin to sing. I sing to the Lord. I try to remember what it's like to let go and let..God. It used to be so easy. It used to feel so natural. Even now as I write I cry. A voice tells me then as it tells me now..everything will be alright. Everything is in My hands. I am in control. I try to make this my mantra. I fail daily. But each day I try and try again to remember the words the Lord said to me. I try and remember the words of this song and sing it aloud in the car to my son (who babbles louder than my singing to let me "hear" his "voice"). I try and remember the Lord is in control. Yes this is the beginning of the beginning of ABA. Yes this is going to possibly be the hardest thing my son--and by extension me--have ever gone through. Luckily, thankfully, we hold steadfast to the promise the Lord has made to us. Or at least I try daily to remember and hopefully soon the stress that I MAKE will begin to fade as I let the peace He gives reign in my life.

Orange County Register: Vaccine-autism link firmed up

2006-03-26T18:43:00.000-08:00

Sunday, March 26, 2006

Vaccine-autism link firmed up: Disease declines since removal of a mercury-based preservative from many vaccines
By Michael Arnold Glueck (OC Register March 26, 2006)
A new study shows that autism is probably linked after all to the use of a mercury-based preservative in childhood vaccines.
This writer has previously commented on a suspected mercury-autism link and takes some solace in the hope that this new information will clarify the causes of autism, which afflicts many of our children and grandchildren.
An article in the March 10 issue of the Journal of American Physicians and Surgeons (JPandS.org) shows that since mercury was removed from the vaccines, an alarming increase in reported rates of autism and other neurological disorders in children not only stopped, but actually dropped by as much as 35 percent.
Authors and independent researchers David A. Geier Mark R. Geier analyzed data from the Centers for Disease Control's Vaccine Adverse Event Reporting System (VAERS) and the California Department of Developmental Services (CDDS) for their study, "Early Downward Trends in Neurodevelopmental Disorders Following Removal of Thimerosal-Containing Vaccines."
From 1989 to 2003, there was an explosion of autism. The incidence of autism (and other related disorders) went from about 1 in 2,500 U.S. children to 1in 166. There are more than 500,000 autistic children in the United States.
In California, reported autism rates peaked in May 2003. If that trend had continued, the rate would have skyrocketed by the beginning of 2006. But, in fact, the Geiers report that the number actually went down – with a real decrease of 22 percent.
This analysis directly contradicts 2004 recommendations of the Institute of Medicine (IOM), which examined vaccine-safety data from the CDC's National Immunization Program. The IOM, not willing to either rule out or corroborate a relationship between mercury and autism, soft-pedaled its findings.
Geier and Geier wrote: "The IOM stated that the evidence favored rejection of a causal relationship between Thimerosal (mercury-based) and autism, that such a relationship was not biologically plausible and that no further studies should be conducted to evaluate it."
As more and more vaccines were added since 1889 to the mandatory schedule of vaccines for children, the dose of the mercury-based preservative Thimerosal rose, so that the cumulative dose injected into babies exceeded the toxic threshold set by many government agencies. Mercury is known to damage nerve cells in very low concentrations.
The Iowa Legislature banned Thimerosal from the state after it documented a 700-fold increase in cases in Iowa. California followed suit, and 32 states are considering doing so.
Up until about 1989 preschool children were given three vaccines: polio, DPT, MMR). By 1999 the CDC recommended a total of 22 vaccines before the first grade, including hepatitis B, which is given to newborns within 24 hours of birth. Many of these vaccines contained mercury. In the 1990s approximately 40 million children were injected with vaccines containing mercury. The cumulative amount of mercury in the total recommended vaccinations would be 187 times the EPA daily exposure limit.
In 1999, on the recommendation of the American Academy of Pediatrics and U.S. Public Health Service, Thimerosal was removed from most childhood vaccines as a "precautionary" measure – i.e., without admitting to any causal link between Thimerosal and autism.
While now out of many childhood vaccines, Thimerosal is still routinely added to some formulations of flu (influenza) vaccine administered to U.S. infants, as well as to several other vaccines (e.g., tetanus-diphtheria and monovalent tetanus) administered to older children and adults.
Jane Orient, M.D., executive director of the American Association of Physicians and Surgeons (AAPS), said, "Concerns about mercury and sushi have gotten a lot more play in the press than mercury and autism.
"Though epidemiological findings are always problematic to interpret, we have the equivalent of a 'challenge/dechallenge' experiment. Autism rates, as measured by two independent government databases, went up as mercury dose increased and are going down as mercury dose decreases," Orient said.
Unfortunately, we may be imprudently undertaking a "rechallenge" phase by mandating Thimerosal-containing influenza vaccine for children. As a consequence, assessing the safety of Thimerosal-containing vaccines remains a matter of significant importance.
Until there is solid scientific evidence to the contrary, parents would be wise to avoid all mercury-containing vaccines. When we make decisions regarding the future health of our children and grandchildren – and the well-being of our families – why take any risk?
Copyright 2005 The Orange County Register

Guest Speakers at START preschool

2006-03-26T15:06:00.000-08:00

Aidan has been in a preschool which meets six hours weekly split up into three hour days. During this time, once a week we have a parent meeting on one of these days. We have had the great fortune to be able to speak with two notorious women this past month. This is highly unusual but very very fortunate for us. It was usually Aaron and myself with three or four other parents, the head of the START program and the guest speaker themselves. As you can imagine there was lots of time to discuss issues one on one.

The first speaker was named Eustacia Cutler. She is Temple Grandin's mom and has recently wrote a book entitled Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story. For those that don't know who Temple is, Temple is a woman who has her PhD. and travels the world to discuss growing up and having autism. She is considered high functioning and many have labeled her as having Aspergers. However, Temple didn't speak until she was four or five years old and this goes against the diagnosis of specifically Aspergers. Eustacia was an older woman. She had her first child, Temple during World War II. She was very with it and conversed easily with us. She definitely didn't look her age (and I am not sure what her age is and I surely would not have asked!). She spoke in a manner reminicent of Katherine Hepburn's era and possibly breeding. We all went around the room discussing our children. Most of the children in the class seem to have a lot of the same features as Temple did as a child. She discussed Temple being off in her own world quite a bit, rocking in a corner, among other things. She said she was a quiet baby who never fussed and everyone thought her baby was the best behaved. She described her as socially isolated for a long time. Apparently a lot of my fellow parents felt this also described their children. I got there a few minutes late and Aaron had described Aidan before. I was surprised when she turned to us and said with a smile, and that doesn't really describe your son does it? I talked about how he lights up and gets very excited when he sees certain other children (his cousin and my young cousin; both boys are a good example). I talked about how he was a fussy baby and that he does want to be near us and with us and shows us affection. We talked also about her experience with her daughter growing up in the fifties. Everyone thought she should be institutionalized. She said her own father went to her grave mad that they didn't do this. She hired a speech therapist and later a nanny. Ultimately she went into a boarding school that both she and her daughter Temple thought was wonderful. There were a few points we don't agree on (namely seeking a cure for autism). But how can I not sit back and listen and show respect for a woman who went through something so difficult with zero support and zero opportunity for interventions? I felt a lot of admiration for this woman, this mother. She was and is a pioneer as a mother to a child with autism. I thoroughly enjoyed listening to her and learning from her experiences.

The next week we sat down with Dr. Bauman. She practices out of Boston (( Associate Professor of Neurology at Harvard Medical School, Assistant Neurologist and Associate Pediatrician at the Massachusetts General Hospital, and Medical Director of Learning and Developmental Disabilities Evaluation and Rehabilitation Services (LADDERS) at MGH/Spaulding Rehabilitation Hospital)) but spends six weeks or so at Casa Colina in Pomona. Here is a little piece on her research "Since 1983, Dr. Bauman, along with Dr. Thomas Kemper, has been involved in autism research. In 1984, these investigators were the first to report anatomic abnormalities in the autistic brain involving neuronal circuitry known to be important to learning, memory, emotion, and behavior. Dr. Bauman is also a collaborator on a number of additional projects including genetic studies in multi-incidence families, PET scan analysis in high functioning adults with autism, and studies of brain serotonin synthesis in children with autism. Dr. Bauman has published extensively and presents regularly at national conferences."

I had heard some mixed reviews about her and was a little nervous. However, because she is a famed pediatric neurologist I came with an arsenal of questions to ask. I walked in and she introduced herself. It was the head of the START program, Aaron, myself and two dads there. I looked to both of the dads and asked if they had questions. They said no and so I began asking away. My first question was about "treating the EEG." What I meant by this was Aidan's 24 hour EEG came back with yet again, some spikes and slowing mild to moderate on the right. The spikes are in roughly every region of the brain. This doesn't mean he is having a seizure but could possibly lead to the spikes turning into seizures one day. It is up to Aaron and I if we want to pursue anti convulsants for Aidan or not. Because he isn't having an actual seizure yet, they call it treating the EEG. Not every ped neurologist does this. Our own isn't pushing this issue but has suggested we consider a trial run. The thing is that anti convulsants are also mood stabilizers. So Aidan might be in a better mood but this is not the trade off (or trade in) we are hoping for--we want language! Dr Bauman couldn't really answer us because she didn't have all the information about our case but she did say we could do a trial run of the medication and document changes. She suggested a six week trial. I asked her about natural medications that are supposed to help with brain function. I started listing the ones I could think of off the top of my head--DMG, taurine, carnisone, carnitine etc. She had a smile on her face and I was worried I had her none too happy by my wanting natural meds rather than prescription. She said we could try those. No Problem. She didn't judge or anything. I was amazed. A lot of people are against using supplements and I worried that bringing this up would really turn her off to speaking to me. I let her know I have been to three pediatric neurologists and finally found one I liked (mainly because she didn't scoff at me when I brought in a note pad to write notes or armed with my copy of Children with Starving Brains). I let her know I was so sad I am losing our neurologist to the CDC (but hope she can stir things up over there!). She did have a recommendation and I am on the wait list for him.

The conversation turned to discussing chelation. This was referred to as "magic cream" and I could tell she was against this as were the other parents there with us. We have Aidan on glutathione which is an antioxidant. It is a cream and now me and Aaron refer to it as "magic cream" and laugh about it when we call one another to get it at bed time (gotta have some laughter to keep a marriage going, especially with a child who has some special needs!) I haven't really noticed much with Aidan being on this except it smells pretty nasty (skunk smell) as you are applying it. The "magic" behind glutathione is that many kids with autism are deficient in their supply of glutathione. However, a parent brought up that a doctor wanted them to use a chelator and shots (possibly the MB-12 shots?) without establishing a need with testing first. This turned the parent off. Of course I understand this and I think that is awful that a practitioner would just turn to chelation without getting the gut "healed" to some extent first AND of course necessary testing. The conversation went into the direction of some people in the medical community not being there to help kids but for the money and I felt a bit uneasy because it felt like they were discussing the DAN! movement. She brought it back to B6 and DMG being found to be helpful by people like Bernard Rimland (a major propenent in the DAN! movement!) so I could tell there were some aspects of DAN! that were appreciated and others that were not. The line was clearly there and so I respected it. She was another fascinating woman to meet and I really respected what she had to say.

Even though I may not agree 100% with what these women had to say, they warrant such respect. Both of them have been in this field of autism much longer than myself and so I tried to listen and learn as much as I could from them. My take is that the world of autism is changing and changes daily. However, we cannot go forward if we do not learn from the past.

AGRE and UCLA'S Mirror Neuron Study

2006-03-26T15:04:00.000-08:00

I went to a meeting last night (March 8th) in Pasadena through Foothill Autism Alliance. One speaker was talking about AGRE. They are the group that does testing--blood work--for the genetic studies on autism. She mentioned they usually only took kids with a brother or sister but now they are taking kids who don't have brothers or sisters with autism or simply have no syblings. A ped neurologist comes to your home and they do a formal assessment and blood work. Then researchers utilize these tests in their studies they do in order to find a link to autism causes. She also mentioned what we think causes are in autism and mentioned it is most likely a combination of: genetics, immune system sensitivities, environmental triggers (including vaccines), and chance. Very interesting. AGRE was formed from Cure Autism Now. So I feel really good about walking next month for this group (Cure Autism Now and WALK NOW--the walk is in Pasadena at the Rose Bowl April 22nd. All are welcome!). Also, the reason I went was because they were discussing the findings out of UCLA about the mirror neuron system. She explained a lot of the background of this system and how vital it is to imitation and joint attention. It is also vital for kids as they develop their social self, empathy for others, social domain and social cognition. They used 11 kids or so on the spectrum that were age 10 and older for this study. The kids were all high functioning. They showed them pictures of a person smiling and they were to smile or something such as this. The experiment utilized techniques that were to see if the subjects understand action and intent. They all performed well. In fact, if guessing from the study groups, they thought the neurotypical child was on the spectrum! So these kids were virtually indistinguishable from their peers at this level. They compared the MRI to typical peers and found zero activity in the mirror neuron system. HOWEVER, these children were performing the task! Also, there was a large amount of activity in the brain during watching the demonstration AND doing the activity in both the motor planning region of the brain and the visual region. So even though the mirror neuron system doesn't work properly for these children, their brain compensates by getting the information and processing it elsewhere in the brain. It really is fascinating! I asked the researcher if she knew the background of these children and what forms of intervention were used on them as children. She said none. They just all went through preschool and what not with no intervention. Also she stated that the interventions we use with kids on the spectrum need to be formulated to include imitation and joint attention. Doing these kinds of activities help fire off neurons in the mirror neuron system. This system is vital for a child with ASD. However, it is so incredible to note that these children and the magnificance of their brains have figured out a way to process and learn activities through alternate means since this mirror neuron system is simply not functioning for them. Needless to say, this is very interesting to me and I learned quite a bit.

Preschool

2006-03-16T00:47:00.000-08:00

We started going to a preschool program two times a week, six hours a week the last week of February. This preschool is four children. It is one on one with four work stations. It is only for children who have a diagnosis of autism.

Technically Aidan has been by himself in the classroom without mom and dad for three sessions thus far. The first one I was unprepared for them to ask me to go "cold turkey." I was alone too. Aaron works on Tuesdays and that was the day this happened. This was last week on Tuesday. I walked outside the door and could hear my son crying. I had the option of going behind a dark glass window to watch. No, couldn't handle that. I could stand the crying but couldn't bare to watch the tears flowing. My son is very very attached to both Aaron and I. But, he is really attached to me. I walked out to the hallway around the bend a bit as an hour went by, he and I both in pain and torment. A woman who works there walked by and I knew the question was coming--"How are you doing?" Here come the tears. They flowed. There was no stopping them now. We hugged. I forgot how much human contact helps. I get this from my husband, from my mom, from my dad and son. But human contact from someone who owes me nothing and doesn't even know me is so foreign and forgotten. Reminds me of the movie that won the Oscar--Crash. It's so true. Back to subject. Out walks his occupational therapist and she informs me he is doing a lot better. She hugs me. She tells me give it a month. He will be fine. These are very nice people. Funny how your superficial opinion about a person changes into more uplifting thoughts once you have been hugged by that person.

Thursday of last week Daddy brought him. Less of the water works according to Dad. He cried or just groaned in dislike in the beginning and then fine. He doesn't really like opening circle time songs or closing circle time songs yet. We attended a meeting that day (I came a bit later that day) and I will discuss that in another post. Our son grabbed my hand and directed me toward the door the minute I walked in. Hard to talk to his teachers because the minute I walk in he wants out.

This past Tuesday, we entered the building with smiles. We walked toward the room where he went the day before for occupational therapy and he smiled and was happy until we kept walking by...towards the door to preschool. He knew it. He began to cry and motioned me towards the other door..the door to OT...the door where mommy stays near and inside. During an OT session Aidan takes mini breaks to rest on me, give himself pressure or input on me (not hurtful), I am his safety. I think the hardest part for him is that he now has to self soothe on his own without me there as his safety. There were tears as we entered and the minute I calmed him I stood up to leave and he searched my eyes pleading with me to stay. It's hard to explain but normally my son takes my presence for granted. He never searches my eyes or makes direct intense contact with me for anything truly. I have mixed feelings. So happy that my son is capable of having a moment of intense eye contact and desire for connection. So sad that I have to be strong and leave him here without his safety. The tears stayed throughout most of the class on and off. During snack time he is happy and babbling away. They take a walk during class and I try to hide by the entrance because I envision him crying if he sees me. They sound happy. I go to the parent's room as I hear them return. He is fine until, once again, they go past the OT door and onto the preschool door. As I enter the room once parents are allowed to retrieve their children, his teacher says he did good today.

I can see why and I can see how this is hard on him. I have been told perhaps I should go walk around the campus and get a coffee or something. I don't know, I just can't bring myself to do it. If he could be content for awhile I think I would feel more comfortable doing this. It just doesn't feel right to leave him alone and not go through what he is going through. I literally feel the pain he feels. I feel the anguish. I feel his fear. It feels as though we are interconnected in so many ways. Part of the problem is that this situation forces a disconnect between mother and son. Though it is something he doesn't want, many times I don't want.....we both need. My son needs this in order to grow and develop. I need this in order to let go (of my Nemo) to some extent. Nonetheless it's difficult for both of us to experience.

Cure Autism Now Walk

2006-03-16T00:46:00.000-08:00

Below is a letter I wrote for our upcoming walk for an organization called CURE AUTISM NOW!

Dear Friends and Family,

On April 22, 2006 my family and I will be participating in a very special event, WALK NOW benefiting the Cure Autism Now Foundation. It is a 5K walk and community resource fair with the proceeds going to further the search for causes and cures for autism. The event will be held in Pasadena, CA at the Rose Bowl. Autism is a devastating disease affecting over 1.5 American children and their families. 1 in every 166 children is newly diagnosed with autism. 5 to 1 are boys.

You may be wondering why Cure Autism Now and WALK NOW are so important to me and my family. Our involvement stems from a very personal and deep emotional contact with this complicated disease.

Both Aaron and myself were introduced to the meaning of the word autism when our son was diagnosed with autism in December of 2005. You can feel free to read along in the blog Kristie writes in at http://testoffaith.blogspot.com/ for further details on our journey through the autism world thus far.

We strongly feel that we can have a direct impact on finding causes and cures for autism. We also feel that Cure Autism Now is a wonderful organization which has been instrumental in furthering autism research. In 1995, when Cure Autism Now was founded there were only 12 researches focused solely on autism. Today there are over 300. That is progress. WALK NOW gives us a tangible way to help the nearly 1.5 million other Americans affected by autism and related disorders.

We are asking for your support in helping us raise money for this worthy cause. Any contribution you are able to make would be greatly appreciated, but we ask you to give big as there is a big need for further research. Our family goal is to raise a minimum of $2000 for Cure Autism Now. Please send your tax-deductible donation in with a completed pledge form. All checks should be made payable to Cure Autism Now. If anyone is interested in perhaps discussing with the business or company they work for to pursue a "corporate sponsorship" we are more than willing to follow up on that as well.

If you would prefer to donate via an email address, please email us directly at the email address given above. Or you can go directly to the walk page at www.walknow.org/06lawk/akaburchit If you do not have access to email or would prefer to simply mail in a donation, a donation form is enclosed for your convenience. If you are interested in coming out to join in the festivities, please let us know. We can sign you up as part of our team. You do not have to walk. You can come out and have a good time! There is lots of family fun activities planned. We look forward to hearing from you. We thank you very much!

Little League offers "CHALLENGERS"

2006-02-26T22:43:00.000-08:00

Just a wonderful article in our local newspaper along the same spirit as the teenage autistic boy who had a glorious basketball game scoring 20 points in a matter of minutes. Here is something our local area is doing to one day emulate what that boy did last week.

A league of their own
Inland Valley Daily Bulletin
For an autistic child, like 9-year-old Jimmy Lisen, playing baseball is much more than just being part of a team. "It helps him," said his mother Diane Lisen, of Rancho Cucamonga. "If it wasn't for this and other social activities - this is how he develops his social skills. They don't know the aspects of people." Jimmy was one of more than 30 special needs children who practiced with the Alta Loma Little League Challenger Program under the direction of coordinator and head coach Kelly Ellis on Feb. 10 at Stork Elementary School in Rancho Cucamonga. "She has the biggest heart of anyone I've ever met and the kids just love her," said Jackie Farrar, whose sons play in the program for Ellis. "She just meets them on their level. Every child no matter what their disability seems to connect with her."
Farrar wanted 9-year-old Sam, who has cerebral palsy, and 7-year-old Joseph, who is autistic, to be on the team because it allows them to work on their social and motor skills with the help of other Little Leaguers.
"It's just an awesome thing all the way around because the volunteer kids get to help in a way to stretch them out of their comfort zone helping the community and kids," said Farrar, 39, of Rancho Cucamonga. Ellis, 42, and her husband Don, 46, of Rancho Cucamonga, last year started the program, which has ongoing signups, for children like their 10-year-old son Bryce, who has cerebral palsy. "I didn't know how much I could teach them," Ellis said. "I just wanted them to feel like they were doing something important and they did." Ellis said although they have a great Little League program, she could not fathom that there's not enough for disabled children to do in this area.
"One thing that bothered me is that the children with special needs are left out," Ellis said. "We had tried to put our son in one of the divisions and the coaches were wonderful, but it was too dangerous for him."
Ellis designs the practices, which are Fridays at Stork, and games, which are Saturdays at Heritage Park in Rancho Cucamonga, with the help of therapists. Players are paired up with other Little League players who assist them in playing catch and hitting baseballs off tees.
"It's amazing how receptive the buddies are to helping," Ellis said.
Rancho Cucamonga resident Nicholas Lamar, 11, and his brother Andrew, 10, who have been playing Little League for five years, both volunteer with the program.
"It puts a smile on my face that I can help someone," Nicholas said.
Nicholas said he enjoys playing baseball with the special needs children, especially his buddy, who is left-handed like him. "It's fun doing it with them because I can teach them stuff they don't know how to do yet," he said. Rancho Cucamonga resident Lisa Pedersen's 11-year-old daughterShel, who has cerebral palsy, and 9-year-old son Myles, who has numerous disabilities, including cerebral palsy, autism, speech impairment and seizures, were back for their second season. "They were really excited to come back and do it again," Pedersen said. "These kids who come out and help are wonderful." Pedersen said this opportunity has given Myles his first team experience and like most players his skills have improved throughout the season. "It's a wonderful program for our kids," Pedersen said. "They get to feel like everybody else. They get excluded from so much in their life just because of their disabilities." Pedersen said in addition to the buddies, who help the players, Ellis is an amazing lady.
"She is like superwoman," Pedersen said. "I was blown away last year the amount of work she took on." She said Ellis is very upbeat and always has a smile on her face when working with the players. "She's just a very loving woman and you can see it the way she talks to the kids," Pedersen said.
Pedersen said there's not many opportunities for disabled children in the community.
"Our kids just get stuck in the background watching everything," she said. "To see my son running around with a smile on his face, takes away the sadness you have in your heart that we have to live with." Written by Christina Guerrero

You think you can do these things but you JUST CAN'T AIDAN...I mean NEMO!

2006-02-22T22:14:00.000-08:00

We have been going to this bouncer place in our area. There are these super tall bouncers you climb (think top of cathedral ceilings) and go down a slide. About two weeks ago Aaron went with Aidan and I took pictures. Aaron was right behind Aidan as they climbed these super tall steps to the bouncer slides, went through obstacle courses, and all sorts of things. Well this last time there was a little boy about 13-15 months of age there with mom, dad, and two older sisters. The little one climbs BY HIMSELF to the top of this bouncer to go down. I watch him below as his mom is next to me. I say to her, Wow he does that all by himself, huh? She says Yes he loves it. As she sees Aidan start to climb she tells her kids to wait because the "big boy" is going to do it all "by himself." She keeps saying those words. Aidan does pretty well but it's funny because people always assume A.) he's a four year old because he is tall and has the body of at least a four year old and B.) these physical things are just so easy to all. In fact, they really aren't for him. There is quite a bit of motor planning to do such a physical activity. Aidan really has come a long way and really built up his muscle tone (which they said was low). However, when Aaron and I step back and watch we see that we also are very protective of him in a "Marlin" type of way. We do have to be and there is no doubt there is a reason for it. At the same time we start slowly to let him do his own thing and not simply "guide" him every minute. It is a hard balance with a child such as Aidan. Let me give an example. I always said when he starts talking I will then have him sleep in his own bed. When he starts talking I will trust him to be in a couple hours of preschool or daycare. "When he starts talking" was my indicator that it was time to let go to some extent. This day has not come and so I am trying slowly to let go of him in other areas of life. But it's definitely hard. I guess what I am saying is I see quite clearly Marlin's pain (If anyone doesn't know what I am talking about please watch Finding Nemo!).

Dr. Laura, Oh No you didn't!!!!

2006-02-22T21:45:00.000-08:00

My husband and I were driving home from speech therapy last week on a Thursday or Friday. On the radio was playing Dr Laura. I put it there when music is on commercials. It's really a hit or miss with this "Dr." (kind of like Oprah). Sometimes her advice is right on and others, well not so much (oh, I can feel the hate mail about to come my way!). Well a woman called in and announced she had a young child, eight months old I believe. Her daughter was born blind. She was calling because her mother in law had taken her aside and asked her whether or not she would have chosen to have her daughter had she known (in utero) before that the daughter would be blind. Dr Laura asked how she responded and did she answer this question. The caller said yes she did and she had said she would of course still have her daughter and also that she called her mother in law out and said well what would you have done. The caller wanted to know if she should tell her husband what was said as she was quite unnerved about this. Dr Laura said the caller was not mad at her mother in law. No. She was (because she knows her mind and heart and all) really mad at the fact that she was internally struggling with being the mother of a blind baby and didn't know how to deal with it. Dr Laura kept insisting, nope you aren't mad at the mother in law (or the question she so rudely posed to this new mother, her daughter in law) but rather the "situation" being dealt to you of having a blind baby girl. Then it cut to commercial. I was yelling and flaring and telling this "DR."off. Aaron was angry too. What kind of a person thinks they know your heart and can tell you you really aren't mad at the question--one no one has the right to ask--but rather you are mad at your situation? Dr Laura, mother of a "typically developing" son thinks she knows the hearts and minds of a parent of a special needs child. Uh-hah. Whatever. Dr Laura came back on the air still discussing the issue even though the caller was off the air. She ended by admitting (she has the right to do this, but not the parent, ah-hah) that the question was indeed an ugly one and one the mother in law should not have asked. I just wonder if her clan sits and idolizes as she spouts this garbage or if perhaps even one person wrote or called in that has been a parent in such a situation. Needless to say, we will opt to listen to CD's if the radio has commercials on at the moment in the future.

And also what would my advice be--well obviously it was an ugly question. If we are to be open and honest in good communication with our spouse, the right thing to do would be to tell the spouse. The right thing to do would be to have an open and honest discussion with your spouse to see where you both are at. Of course having a special needs child is difficult. Of course people engage in the "blame game" to some extent, especially during the beginning. However, to just push the question from a mother in law aside and attribute your anger towards the question SOLELY to your anger over the despair of your "situation" with a special needs child is just plain ridiculous to me. But then again what do I know? I don't have a PhD. in Physiology like the esteemed "Dr." I would also advice the pair to sit down and discuss the matter with the mother in law as well. Though the question is so ugly that I doubt this mother in law truly has a lot of love towards her grand baby. I could be wrong. But seriously if a grandma asks such a question (and not to her daughter but to her daughter in law?) I kind of wonder if she really loves her grand baby. In that case, it's good for both the daughter in law and her son to know that so they will know how they will proceed with the grandma being in contact with her grand baby. That would be my advice to this mom. Lastly I would send lots of love and hugs her way. No one (especially those not in our shoes) has the right to automatically judge the hearts and minds of a parent such as we are. And I really don't care if you are Dr. Laura, you had NO RIGHT to do it either!!!

Autism=REALLY GOOD FUN GIFT? Hmmmm....

2006-02-10T23:22:00.000-08:00

A new look at autism as Berlin film festival opens

By Noah BarkinThu Feb 9, 11:47 AM ET
The Berlin Film Festival opened on Thursday with a story of love and loss starring Sigourney Weaver as an autistic woman whose daughter dies in a car crash and Alan Rickman as the man who helps her cope.
With snow falling on the German capital, the bittersweet British-Canadian co-production "Snow Cake" kicked off the 56th annual "Berlinale," regarded as one of the top three festivals in the world alongside Cannes and Venice.
The film, which received scattered applause from Berlin's notoriously blunt audience of journalists and critics, jolts viewers out of their seats early on when a truck ploughs full-speed into Rickman's car, instantly killing a quirky hitchhiker girl he has just picked up.
Wracked with guilt about the accident and weighed down by his own troubled past, Rickman's character Alex forms a strange bond with the girl's mother, a high-functioning but emotionally erratic autistic named Linda.
Weaver, whose diverse film credits include the "Alien" films and "The Ice Storm," spent the better part of a year meeting people with autism to prepare for the role -- an experience she said gave her a new view on the disorder.

"I think we have to begin to see it as a gift," she told a news conference. "We may not understand what it's there for, but if you're in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is."

GRIM LINE-UP
"Snow Cake" headlines what critics have described as a strong but morbid line-up of films featuring murder, drug addiction, exorcism and rape.
Weaver and Rickman will accompany Berlinale head Dieter Kosslick down the red carpet on Thursday evening, and other stars due to appear at the February 9-19 festival include George Clooney, Philip Seymour Hoffman and Natalie Portman.
A record number of 18,000 film buyers, sellers, producers, directors, actors and journalists will crowd the screening of 400 films, including "A Prairie Home Companion" from Robert Altman and "The Road to Guantanamo," an account of three British men held at the U.S. prison camp in Cuba.
"Snow Cake," which contains both poignant and off-key moments, was directed by Marc Evans and written by first time screen-writer Angela Pell. Pell was inspired by her own autistic son Johnny, who like Weaver's character in the film loves to eat snow and bounce up and down on a trampoline.

"I wanted to write a film that showed that sometimes living with autism can be harrowing but that actually most of the time it's really good fun," Pell told reporters.

Unlike "Rain Man," the 1988 film that starred Dustin Hoffman as the autistic brother of Tom Cruise, "Snow Cake" strives for a more subtle message about a disorder which is characterised by repetitive acts and a preoccupation with fantasy.
In a dig at those who would try to put autism in a box, one of the film's more disagreeable characters says at one point: "I know about autism, I saw the film."

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I asked an individual on another webgroup I belong too if I had permission to post his comments. Because his words were so profound and felt "spot on" to what I would want to say I am posting them below (he was addressing someone who had felt perhaps Weaver's statement might have been taken out of context a bit):

"But autism isn't the gift, our children are. And you are the parent of a child diagnosed with autism, everyday you are immersed in your child's life and you deal with the hardships that come with autism. You have a right to say that. Weaver doesn't.

Weaver is talking about what other people can get out of people with autism. She is not part of our community, she hasn't paid her dues. She studied people with autism for awhile to do a movie, make money and further her career. Talking about our kids as a "gift" trivializes them, and us, and the hardships our kids endure everyday. And who do you think our shallow and celebrity crazed corporate media are going to listen to? Sigourney Weaver, defender of the status quo, or deluded, desperate parents with a bunch of cockamamie ideas who are too stupid to realize they have received a gift.

Our kids have horrible health problems caused by a wildly corrupt medical system. The greatest gift our children could give us is the strength and resolve to reduce to rubble the institutions that did this to them.

The kind of attitude expressed by Weaver has already been picked up by the international press. It empowers decisionmakers to do nothing for our kids. Why should they? Our children are gifts, and we should be grateful for them exactly the way they are. This is exactly what the neurodiversity types are saying. Our kids are sick and discriminated against at every point of their lives. They don't need this shallow condescension from an actress."

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I could not have said the above any better! I don't have much to add except to say that perhaps Sigourney spent the better part of her year of actor training around high functioning or Asperger adults rather than children with the autism (remember it is a spectrum!) that many children exhibit; which can vary. Being that her part was one of an adult, I am assuming the training was also exclusively around adults as well. To make a "blanket" statement about autism in general, when you have been only around high functioning/Aspergers and adults only is clearly quite naive on her part. I can't speak to the words of the woman who has a son with autism and actually wrote this screenplay. She wrote that autism is usually "really good fun." I know nothing of her son's age or actual diagnosis. For all I know he could be older now and have Asperger's as well. Unfortunately this article does not specify.

I am not certain that parents of children with Asperger's or even children with Asperger's might agree with this comment though (really good fun). Many children with Asperger's have a hard time finding and keeping friends and may go through many of their school years without the comfort of friendship. Many are socially withdrawn. Still others may have difficulty controlling emotions and range of emotions. I don't know if these children and parents of these children would define their lives at this stage as "really good fun." Then again Asperger's isn't my son's diagnosis. Children with autism can exhibit a wide range of behaviors that a parent may or may not find as really good fun. Though my son is young and does not exhibit many of these behaviors some (on the whole of the spectrum) might include: banging a head repetitively, fierce tantrums lasting hours not minutes, stimming in a corner for the greater part of a day, screaming in public, flailing arms, and so on. So yeah saying the autism (in general) can be really good fun is perhaps not representative of every parent or child who experiences autism!

I would like to close with a few paragraphs I wrote a few weeks ago on another group site. I think it sums up what I want to take away as a parent from this thing we call Autism.

I had a dream the other night. I don't know if it was out of fear of dying and leaving my son alone or perhaps reading various posts or maybe it was a dream to let me know I am the right person to be the mom of this little boy. Anyways my son was older, like four (he's 2.7). He is nonverbal right now but babbles and jargons. In the dream he was talking, smiling, and sociable. Since this is really the main area of concern it was like he was "beyond the diagnosis."Then it went to a seperate strain of the dream. Here was my son or maybe his twin (he doesn't have an actual twin though in real life) I am not sure. His face was dirty. He was jabbing and flailing his arms about. He was hissing at me like an island native might do to strangers in their territory. I hate to use the word savage but it was like that--a child who didn't know me, his mother. A child who hadn't been helped, loved, or taught. No one had put any stock into this child or his future. No one had looked into therapies, diets, biomedical intervention, or anything and now (it may not have been too late of course) his future was unsure.

I woke up realizing there is a reason why this child who happens to have autism RIGHT NOW is mine (I am saying regardless of how my son came to have autism, I was still meant to be his mom). I don't mean to act like I am a supermom by any means. But I am a mom who will fight and research and learn and do everything I can until my last breath to help my guy. I don't fight for normalcy. I don't care about that. I know that's a goal of many parents to have their child be "neuro typical" but I don't mind quirky or "un ordinary" (we call that extraordinary right?) I just want him to be happy, be able to speak, have a mind ready to learn, be loved, have at least one "kindred spirit" as his friend. If he has that he is set. I won't stop til he has these things.

I will add here that WHEN my son has all these things then yeah, I will say our life is "really good fun." But not until then!

Progress he is making

2006-02-06T17:21:00.000-08:00

Around November Aidan started getting a bit of an outbreak of something in his "bum" area. At first a pediatrician we saw thought it might be yeast so she gave us an over the counter application for yeast. Well it didn't seem to go away. In fact it spread. Around this time Aidan started realling acting up. There was about two weeks in speech and occupational therapy that he was absolutely miserable. He cried, kicked, was completely upset. We had been doing epsom salt baths every few days a week as well and these usually help skin issues (they also are a mild detoxer, hmm.?) but for him the "rash" was spreading. It finally dawned on me it was eczema. Aidan hadn't had this since a baby up until around 12 months of age or so. I started treating with some hydrocortisone and then bought some lotion at Henry's that has some great things in it. Amazingly he started to act a lot better and has been back to his usual toddler self which means sometimes happy sometimes upset but never really mainly one side of these two extremes. Today at occupational therapy he did a lot of new things including handing his teacher the swing he wanted, putting items away as she wanted, initiating "chair" time where they do specific activities. He didn't fuss once or cry or anything. He did a few loud deep sigh sounds when it was something he didn't want (for those who know my Dad or my grandpa Gerald, think of them because that is exactly what it sounds like!). He just had a lot of fun. He has been making a lot more sounds, mouthing like he will say something, just a bit more on the interactive side. We really haven't done much different except treat the eczema.

Something else I am coming to realize is that for Aidan this may be more about an immune and therefore viral issue than anything else. I myself may in fact have some auto immune disease and the possibility I might have transferred this genetically to my son is very strong. I find that I am not alone as a mother. Many women who have children with autism find they have some auto immune disease.

I am ashamed to say I haven't been to a doctor for myself since Aidan was about 2 months old or so. It has been over two years! What inspired me to go to the doctors was watching Lorenzo's Oil for the first time ever. I wanted to see what Lorenzo was doing now and discovered his mother had died of cancer within the last few years. I thought this mom did all she could to ensure her son life and possibly forgot to take care of her own health. I figured I better not make this mistake (not saying this mother had done that at all. In fact I am not sure she did but that is what this experience taught me). They did this test called an ANA (anti nuclear antibodies test I believe is what it stands for). I scored at a 2.1 and anything over 1 is more than likely an auto immune disease. Now onto a specialist to see what exactly this is. Now Aidan and myself are in the same boat it seems. Mainstream medicine will only offer both of us prescription medication (him to calm him down AKA Ritilin, and me steroids). He sees a physician who offers more natural or alternative remedies and now I am considering doing the same! Both are out of network but the alternative to alternative medicine, I think it well worth the cost!

For the past decade there has been this divide amongst DAN! physicians and a select group of immune doctors. DAN!'s historically haven't treated the viral part of "autism" as much as the immune doctors (one infamous immune doctor is Dr Goldberg in Tarzana). Similarly, immune doctors haven't treated their "autistic" patients with the DAN! philosophy in mind (to some extent, or at least they wouldn't admit it I think). However things are changing.

At this point, let me give a bit of history on Dr. Goldberg to the extent to which I understand what he does. Dr. Goldberg believes autism is completely a neuroimmune disease (meaning an auto-immune response that affects the brain). He believes many children diagnosed with autism actually have "Nero Immune Dysfunction Syndrome" or NIDS. There are reasons why he believes this way. Namely the autism Kanner describes is normally not the type of autism we see in children today. He has some very interesting theories that have worked for many families (not all families mind you!) and I will simply put his website here for anyone who would like to peruse it
http://www.neuroimmunedr.com/index.html

There is a local area father who recovered his son with the use of MB-12 nasal spray and Valtrex. Valtrex is an anti viral. MB-12 nasal spray is the same as the shot we already give Aidan every third evening (by the way, he is a trooper!) except it's a nasal spray. This is interesting for several reasons. Dr Goldberg has had a standard protocol which includes the following: anti fungal, anti-viral, and then SSRI (Selective Serotonin Reuptake Inhibitors). Now most parents seeing a DAN! physician have their children on an anti fungal. But instead of adding the anti-viral and then the SSRI, they have bypassed this to just include the anti-viral and the MB-12 nasal spray. Not all DAN! physicians are on board with this. Many of them do extensive (and expensive) viral testing (HHV, CMV, or EPV) and see if these levels are elevated in order to proceed with this course of action. Some parents chose to do chelation before doing this step, after this step, or never. I don't know if I am convinced to go in one direction or another with the guidance of our DAN! physician. However, I think this is a path we need to consider taking in the near future.

So where are we on Aidan's biomedical journey? Aidan had an x ray a few weeks ago to see if he is "constipated." I am waiting to hear back from Dr Sears office on this issue. Then we proceed onto Nystatin and then onto glutathione creame. Once he is on these two things for awhile we go back to Dr Sears and I have many areas of discussion I have already submitted to him to talk about.

ABA? It isn't happening YET. We are going in for an assessment with CARD (Garden Grove) on the 17th of this month and then we are on a wait list for I am not sure how long. I also tried to get the regional center to approve of Stepping Stones but they did not want to go for it. I am attempting to discuss this matter with a boss of a boss and hopefully will know more. The advantage to Stepping Stones over CARD is the fact they have no wait! They have gone through the steps to get approval through LA FEAT www.lafeat.org and are considered a reputable vendor. Parents I have spoken with are quite happy with their services. As I know more about this or find out more I will post. I am eager (and quite scared frankly) to get services going with an ABA agency. I find it crucial to my son's development and hope that those in "power" I have spoken too also feel as I do.

Wheww..this was quite a lengthy update. I will try to do better about posting more frequently so posts won't be this long. Aww., who am I kidding. I am a writer and I write A LOT! Take care all!

Next topic of interest in the coming months: DREADED IEP! Stay tuned....

Follow up to Article about Boys

2006-02-06T17:16:00.000-08:00

This was written in response to the article I comment on below.
Is the deficit in learning among boys a new phenomenon, and if so, why? Why is the difference more pronounced now than in the past? It is not the law, the cultural milieu or testosterone levels that account for the vast majority of change. Rather, it is our physical environment that has changed, and it has changed our biochemistry, physiology and physical as well as mental health. Mounting evidence strongly implicates mercuryexposureas playing a role in the increasing rates of learning disabilities found today in our children. Exposure to mercury is prevalent in our environment, and recent research has shown that infants and children are vulnerable to exposure levels far lower than once believed. In 2004, the Environmental Protection Agency reported that approximately one in every six women of childbearing age had mercury levels that were high enough to cause adverse neurodevelopmental outcomes in their unborn children. Studies into the toxicity of mercury have consistently reported that at low exposure levels, boys are much more susceptible to mercury's toxic effects on brain development than girls are. We must focus with urgency and concert-ed scientific research on the physiological damage mercury has wrought disproportionately on boys. Ultimately, we must work aggressively to decrease exposure to mercury, in the air we breathe, the food we eat or the flu vaccine prescribed by our doctor.

Lyn Redwood, R.N., M.S.N.,
President Robert J. Krakow,
Board of Directors Sensible Action for Ending Mercury-Induced Neurological Disorders (SafeMinds) Tyrone, Ga.

Trouble with Boys

2006-01-24T20:04:00.000-08:00

The Trouble With Boys They're kinetic, maddening and failing at school. Now educators are trying new ways to help them succeed.
By Peg Tyre
Newsweek
Jan. 30, 2006 issue -
I have highlighted pertinent items in this color.
My thoughts and ideas learned from others are reflected in this color.
Spend a few minutes on the phone with Danny Frankhuizen and you come away thinking, "What a nice boy." He's thoughtful, articulate, bright. He has a good relationship with his mom, goes to church every Sunday, loves the rock band Phish and spends hours each day practicing his guitar. But once he's inside his large public Salt Lake City high school, everything seems to go wrong. He's 16, but he can't stay organized. He finishes his homework and then can't find it in his backpack. He loses focus in class, and his teachers, with 40 kids to wrangle, aren't much help. "If I miss a concept, they tell me, 'Figure it out yourself'," says Danny. Last year Danny's grades dropped from B's to D's and F's. The sophomore, who once dreamed of Stanford, is pulling his grades up but worries that "I won't even get accepted at community college."
His mother, Susie Malcom, a math teacher who is divorced, says it's been wrenching to watch Danny stumble. "I tell myself he's going to make something good out of himself," she says. "But it's hard to see doors close and opportunities fall away."
What's wrong with Danny? By almost every benchmark, boys across the nation and in every demographic group are falling behind. In elementary school, boys are two times more likely than girls to be diagnosed with learning disabilities and twice as likely to be placed in special-education classes. High-school boys are losing ground to girls on standardized writing tests. The number of boys who said they didn't like school rose 71 percent between 1980 and 2001, according to a University of Michigan study. Nowhere is the shift more evident than on college campuses. Thirty years ago men represented 58 percent of the undergraduate student body. Now they're a minority at 44 percent. This widening achievement gap, says Margaret Spellings, U.S. secretary of Education, "has profound implications for the economy, society, families and democracy."
With millions of parents wringing their hands, educators are searching for new tools to help tackle the problem of boys. Books including Michael Thompson's best seller "Raising Cain" (recently made into a PBS documentary) and Harvard psychologist William Pollack's definitive work "Real Boys" have become must-reads in the teachers' lounge. The Gurian Institute, founded in 1997 by family therapist Michael Gurian to help the people on the front lines help boys, has enrolled 15,000 teachers in its seminars. Even the Gates Foundation, which in the last five years has given away nearly a billion dollars to innovative high schools, is making boys a big priority. "Helping underperforming boys," says Jim Shelton, the foundation's education director, "has become part of our core mission."
The problem won't be solved overnight. In the last two decades, the education system has become obsessed with a quantifiable and narrowly defined kind of academic success, these experts say, and that myopic view is harming boys. Boys are biologically, developmentally and psychologically different from girls—and teachers need to learn how to bring out the best in every one. "Very well-meaning people," says Dr. Bruce Perry, a Houston neurologist who advocates for troubled kids, "have created a biologically disrespectful model of education."
Thirty years ago it was girls, not boys, who were lagging. The 1972 federal law Title IX forced schools to provide equal opportunities for girls in the classroom and on the playing field. Over the next two decades, billions of dollars were funneled into finding new ways to help girls achieve. In 1992, the American Association of University Women issued a report claiming that the work of Title IX was not done—girls still fell behind in math and science; by the mid-1990s, girls had reduced the gap in math and more girls than boys were taking high-school-level biology and chemistry.
Some scholars, notably Christina Hoff Sommers, a fellow at the American Enterprise Institute, charge that misguided feminism is what's been hurting boys. In the 1990s, she says, girls were making strong, steady progress toward parity in schools, but feminist educators portrayed them as disadvantaged and lavished them with support and attention. Boys, meanwhile, whose rates of achievement had begun to falter, were ignored and their problems allowed to fester (click here for related essay).
Boys have always been boys, but the expectations for how they're supposed to act and learn in school have changed. In the last 10 years, thanks in part to activist parents concerned about their children's success, school performance has been measured in two simple ways: how many students are enrolled in accelerated courses and whether test scores stay high. Standardized assessments have become commonplace for kids as young as 6. Curricula have become more rigid. Instead of allowing teachers to instruct kids in the manner and pace that suit each class, some states now tell teachers what, when and how to teach. At the same time, student-teacher ratios have risen, physical education and sports programs have been cut and recess is a distant memory. These new pressures are undermining the strengths and underscoring the limitations of what psychologists call the "boy brain"—the kinetic, disorganized, maddening and sometimes brilliant behaviors that scientists now believe are not learned but hard-wired.
When Cris Messler of Mountainside, N.J., brought her 3-year-old son Sam to a pediatrician to get him checked for ADHD, she was acknowledging the desperation parents can feel. He's a high-energy kid, and Messler found herself hoping for a positive diagnosis. "If I could get a diagnosis from the doctor, I could get him on medicine," she says. The doctor said Sam is a normal boy. School has been tough, though. Sam's reading teacher said he was hopeless. His first-grade teacher complains he's antsy, and Sam, now 7, has been referring to himself as "stupid." Messler's glad her son doesn't need medication, but what, she wonders, can she do now to help her boy in school?
For many boys, the trouble starts as young as 5, when they bring to kindergarten a set of physical and mental abilities very different from girls'. As almost any parent knows, most 5-year-old girls are more fluent than boys and can sight-read more words. Boys tend to have better hand-eye coordination, but their fine motor skills are less developed, making it a struggle for some to control a pencil or a paintbrush. Boys are more impulsive than girls; even if they can sit still, many prefer not to—at least not for long.
Thirty years ago feminists argued that classic "boy" behaviors were a result of socialization, but these days scientists believe they are an expression of male brain chemistry. Sometime in the first trimester, a boy fetus begins producing male sex hormones that bathe his brain in testosterone for the rest of his gestation. "That exposure wires the male brain differently," says Arthur Arnold, professor of physiological science at UCLA. How? Scientists aren't exactly sure. New studies show that prenatal exposure to male sex hormones directly affects the way children play. Girls whose mothers have high levels of testosterone during pregnancy are more likely to prefer playing with trucks to playing with dolls. There are also clues that hormones influence the way we learn all through life. In a Dutch study published in 1994, doctors found that when males were given female hormones, their spatial skills dropped but their verbal skills improved.

Interesting side note here in reference to above sentence. There are a few studies that have indicated a connection between autism mercury (thimerisol) and testosterone.

Boyd Haley: http://www.autismmedia.org/media2.html

Geiers: http://www.autismmedia.org/media4.html

Five times as many boys are regressing into autism than girls. As Boyd Haley has demonstrated in the lab, estrogen has a protective effect on neurons (grown inculture)when thimerosal was introduced (in nano-molar amounts). When the test was repeatedwith testosterone instead of estrogen...the introduction of thimerosal quicklydestroyed the neurons.The Geiers have discovered a bonding between mercury and testosterone...that forms longchains which then form "sheets" that are trapped in the fatty tissues of the body (brain & vital organs) making it very difficult to extricate the mercury from the body...and hindering the benefits of chelation treatements.When girls are injured and regress into autism... they are often profoundly more autisticthan the typical autistic boy... probably because of the sheer acuteness of the mercury exposure overwhelming the protective effects of estrogen. And nearly every autistic child tested for excess testosterone... shows levels far above normal.

It is interesting to note that with the addition of female hormones verbal skills improved in this study named above as well.

In elementary-school classrooms—where teachers increasingly put an emphasis on language and a premium on sitting quietly and speaking in turn—the mismatch between boys and school can become painfully obvious. "Girl behavior becomes the gold standard," says "Raising Cain" coauthor Thompson. "Boys are treated like defective girls."
Two years ago Kelley King, principal of Douglass Elementary School in Boulder, Colo., looked at the gap between boys and girls and decided to take action. Boys were lagging 10 points behind girls in reading and 14 points in writing. Many more boys than girls were being labeled as learning disabled, too. So King asked her teachers to buy copies of Gurian's book "The Minds of Boys," on boy-friendly classrooms, and in the fall of 2004 she launched a bold experiment. Whenever possible, teachers replaced lecture time with fast-moving lessons that all kids could enjoy. Three weeks ago, instead of discussing the book "The View From Saturday," teacher Pam Unrau divided her third graders into small groups, and one student in each group pretended to be a character from the book. Classes are noisier, Unrau says, but the boys are closing the gap. Last spring, Douglass girls scored an average of 106 on state writing tests, while boys got a respectable 101.
Primatologists have long observed that juvenile male chimps battle each other not just for food and females, but to establish and maintain their place in the hierarchy of the tribe. Primates face off against each other rather than appear weak. That same evolutionary imperative, psychologists say, can make it hard for boys to thrive in middle school—and difficult for boys who are failing to accept the help they need. The transition to middle school is rarely easy, but like the juvenile primates they are, middle-school boys will do almost anything to avoid admitting that they're overwhelmed. "Boys measure everything they do or say by a single yardstick: does this make me look weak?" says Thompson. "And if it does, he isn't going to do it." That's part of the reason that videogames have such a powerful hold on boys: the action is constant, they can calibrate just how hard the challenges will be and, when they lose, the defeat is private. (Ah hah moment!)
When Brian Johns hit seventh grade, he never admitted how vulnerable it made him feel. "I got behind and never caught up," says Brian, now 17 and a senior at Grand River Academy, an Ohio boarding school. When his parents tried to help, he rebuffed them. When his mother, Anita, tried to help him organize his assignment book, he grew evasive about when his homework was due. Anita didn't know where to turn. Brian's school had a program for gifted kids, and support for ones with special needs. But what, Anita asked his teachers, do they do about kids like her son who are in the middle and struggling? Those kids, one of Brian's teachers told Anita, "are the ones who fall through the cracks."
It's easy for middle-school boys to feel outgunned. Girls reach sexual maturity two years ahead of boys, but other, less visible differences put boys at a disadvantage, too. The prefrontal cortex is a knobby region of the brain directly behind the forehead that scientists believe helps humans organize complex thoughts, control their impulses and understand the consequences of their own behavior. In the last five years, Dr. Jay Giedd, an expert in brain development at the National Institutes of Health, has used brain scans to show that in girls, it reaches its maximum thickness by the age of 11 and, for the next decade or more, continues to mature. In boys, this process is delayed by 18 months.
Middle-school boys may use their brains less efficiently, too. Using a type of MRI that traces activity in the brain, Deborah Yurgelun-Todd, director of the cognitive neuroimaging laboratory at McLean Hospital in Belmont, Mass., tested the activity patterns in the prefrontal cortex of children between the ages of 11 and 18. When shown pictures of fearful faces, adolescent girls registered activity on the right side of the prefrontal cortex, similar to an adult. Adolescent boys used both sides—a less mature pattern of brain activity. Teenage girls can process information faster, too. In a study about to be published in the journal Intelligence, researchers at Vanderbilt University administered timed tests—picking similar objects and matching groups of numbers—to 8,000 boys and girls between the ages of 5 and 18. In kindergarten, boys and girls processed information at about the same speeds. In early adolescence, girls finished faster and got more right. By 18, boys and girls were processing with the same speed and accuracy.
Scientists caution that brain research doesn't tell the whole story: temperament, family background and environment play big roles, too.

The above omits chemistry. Not discussed are the physiological roots of the trend toward increasing disparity in intellectual performance between boys and girls.

Some boys are every bit as organized and assertive as the highest-achieving girls. All kids can be scarred by violence, alcohol or drugs in the family. But if your brain hasn't reached maturity yet, says Yurgelun-Todd, "it's not going to be able to do its job optimally."
Across the nation, educators are reviving an old idea: separate the girls from the boys—and at Roncalli Middle School, in Pueblo, Colo., administrators say, it's helping kids of both genders. This past fall, with the blessing of parents, school guidance counselor Mike Horton assigned a random group of 50 sixth graders to single-sex classes in core subjects. These days, when sixth-grade science teacher Pat Farrell assigns an earth-science lab on measuring crystals, the girls collect their materials—a Bunsen burner, a beaker of phenyl salicylate and a spoon. Then they read the directions and follow the sequence from beginning to end. The first things boys do is ask, "Can we eat this?" They're less organized, Farrell notes, but sometimes, "they're willing to go beyond what the lab asks them to do." With this in mind, he hands out written instructions to both classes but now goes over them step by step for the boys. Although it's too soon to declare victory, there are some positive signs: the shyest boys are participating more. This fall, the all-girl class did best in math, English and science, followed by the all-boy class and then coed classes.
One of the most reliable predictors of whether a boy will succeed or fail in high school rests on a single question: does he have a man in his life to look up to? Too often, the answer is no. High rates of divorce and single motherhood have created a generation of fatherless boys. In every kind of neighborhood, rich or poor, an increasing number of boys—now a startling 40 percent—are being raised without their biological dads.

A very pertinent fact indeed!

Psychologists say that grandfathers and uncles can help, but emphasize that an adolescent boy without a father figure is like an explorer without a map. And that is especially true for poor boys and boys who are struggling in school. Older males, says Gurian, model self-restraint and solid work habits for younger ones. And whether they're breathing down their necks about grades or admonishing them to show up for school on time, "an older man reminds a boy in a million different ways that school is crucial to their mission in life."
In the past, boys had many opportunities to learn from older men. They might have been paired with a tutor, apprenticed to a master or put to work in the family store. High schools offered boys a rich array of roles in which to exercise leadership skills—class officer, yearbook editor or a place on the debate team. These days, with the exception of sports, more girls than boys are involved in those activities.
In neighborhoods where fathers are most scarce, the high-school dropout rates are shocking: more than half of African-American boys who start high school don't finish. David Banks, principal of the Eagle Academy for Young Men, one of four all-boy public high schools in the New York City system, wants each of his 180 students not only to graduate from high school but to enroll in college. And he's leaving nothing to chance. Almost every Eagle Academy boy has a male mentor—a lawyer, a police officer or an entrepreneur from the school's South Bronx neighborhood. The impact of the mentoring program, says Banks, has been "beyond profound." Tenth grader Rafael Mendez is unequivocal: his mentor "is the best thing that ever happened to me." Before Rafael came to Eagle Academy, he dreamed about playing pro baseball, but his mentor, Bronx Assistant District Attorney Rafael Curbelo, has shown him another way to succeed: Mendez is thinking about attending college in order to study forensic science.
Colleges would welcome more applications from young men like Rafael Mendez. At many state universities the gender balance is already tilting 60-40 toward women. Primary and secondary schools are going to have to make some major changes, says Ange Peterson, president-elect of the American Association of Collegiate Registrars and Admissions Officers, to restore the gender balance. "There's a whole group of men we're losing in education completely," says Peterson.
For Nikolas Arnold, 15, a sophomore at a public high school in Santa Monica, Calif., college is a distant dream. Nikolas is smart: he's got an encyclopedic knowledge of weaponry and war. When he was in first grade, his principal told his mother he was too immature and needed ADHD drugs.

Personal RANT: Why is the answer to everything prescription drugs? Whatever happened to the concept of a boy that just has excess energy? Also, let's try more natural way to reduce the attention issues: diet change (no soda, fast food for starters). Why the jump to drugs constantly?

His mother balked. "Too immature?" says Diane Arnold, a widow. "He was six and a half!" He's always been an advanced reader, but his grades are erratic. Last semester, when his English teacher assigned two girls' favorites—"Memoirs of a Geisha" and "The Secret Life of Bees" Nikolas got a D. But lately, he has a math teacher he likes and is getting excited about numbers. He's reserved in class sometimes. But now that he's more engaged, his grades are improving slightly and his mother, who's pushing college, is hopeful he will begin to hit his stride. Girls get A's and B's on their report cards, she tells him, but that doesn't mean boys can't do it, too.
With Andrew Murr, Vanessa Juarez, Anne Underwood, Karen Springen and Pat Wingert
© 2006 Newsweek, Inc.

Faith Tested

2005-12-03T23:17:00.000-08:00

I debated over and over whether I should post. I had promised that once we saw the behavioral psychologist through the regional center I would indeed post. So here is a summary of what happened. We went to San Bernadino for the evaluation. The behavioral psychologist completed several tests on Aidan. She did a Childhood Autism Rating Scale (CARS test), a cognitive test, and a Pre-Linguistic Autism Diagnostic Observation Schedule (PL-ADOS) test. The CARS was based on what I told her. I was completely honest and didn't hold anything back. Perhaps what added to his score (which the higher the number=autism) was me telling her how he had used to say Ma Ma and then Da Da at 10 months old and stopped between 12-18 months saying this. I explained that we stopped doing "baby talk" and this may have contributed. Either way it is a sure sign to examiners that he "used" to have words and lost them. Anyways I let her know absolutely everything without holding back any information. I gave examples and told the good and the bad (or at least what they consider the bad or "red flags" and I am well versed in them of course.). The next test was cognitive. They had pegs for Aidan to put in which he did beautifully. He stacked small little (swallable size) blocks. He did about three. He is used to the cloth and large type but surprisingly he did this for her. He had to do a few other tests and the only one he wouldn't do was put shapes into a shape sort or on the page. Now the texture of these shapes was small and plastic. At home he is used to larger and wood. First she wanted him to match them to a page in a book but he is not used to this. So he was to put them into place on a board. He did not perform this task though. In his defense, Aidan had threw up the evening before (he was stressed as was I JK) and woke up with a cold and 101 fever. So he was performing while sick and behaving MUCH better than I expected. Next she blew bubbles to see what his reaction would be. He pointed and popped the bubbles and was excited and smiling. He looked to her when she stopped and went and touched the bubbbles "prompting" her for more. This is part of the ADOS test which measures how a toddler responds to certain things in certain environments. I think he aced this. In a different room she set up a bunny that was moving electronically. He thought this was cool and tried to go near it and study it. That I think he did well with. Then she set up (GET THIS) a doll with a little tea party. She put some play-doh out and said "oh here is a birthday cake" and "pat pat the birthday cake" and she started singing a Happy Birthday song. Aidan was handed the dolly and he looked at it and promptly threw it and then proceeded to throw a little fit. I am sure this made his score go up a few points on the ADOS. She did say normally boys aren't too excited by the "tea party birthday" with a doll. Lastly she put out a jack in the box. The toy went and popped and Aidan was smiling with glee and went near it. He tried to wind the toy to make it go and was excited when it popped again. So that completed testing.

Here is a summary of the scores:
CARS=32
ADOS=16
Cognitive 18 months

So a definition. Autism is a spectrum. Anywhere from 15-29 is considered non autistic. Any scores 30 and above is considered autism. Being that he scored 32, this is considered mild autism. The CARS test is a series of questions in which a score of each question is 1 through 4 points. It is divided into three sections: Communication, Social, and Repetitive Behavior.

The ADOS is a test that measures the reaction of an environment that a toddler has. They begin to say a child has autism if he scores above 12. Guess I need to work on the dolly tea and birthday parties from now on.

Cognitively, she and I talked and more than likely it is lower than where he truly is. We discussed on this he wasn't feeling well and normally he can put shapes of wood on a board with NO PROBLEM. At home we have one with varying color and size circles and one with triangle, square, and rectangle. So it was put at 18 months but really that isn't a true concern of mine.

The behavioral psychologist took about 15 minutes to give us the scores. She went over everything with us. We talked about additional services. She herself said she had only met one boy who lost the diagnosis. He was eight and still had some characteristics in her opinion. She didn't cringe when I mentioned a DAN doctor and knew what this was. She said she wouldn't do a "whole bunch" of therapies like ABA and floortime together as recent research has stated this wasn't good for the child. YET the papers and articles she gave and I read said the OPPOSITE was true. She gave us several articles and papers to help.... I guess. One was printed in 1996 (uh like 10 years ago) and the doctor was COMPLETELY painting a dark picture of autism. I am not sure why the regional center would give out an article that A. is so outdated as information on autism changes and has evolved SO MUCH in the past decade and B. is so negative and bleak about the future and recovery. I should say the person doing this evaluation was very nice and Aidan, for the most part (and being a sick lil guy) was very well behaved (MUCH more than I expected). I think it helped that she was Hispanic looking and very pretty. He did a lot of smiling and made some great eye contact with her of course.

In truth, Aaron and I talked weeks...months before this appointment. We expected this. We knew it was inevitable. YET, we still feel crushed. There is an anxiety of sorts. I take hope in other parents I have met that said their child at my son's age scored over 40 on a CARS test and now at 4.5 or closer to 5 is no longer on the "spectrum." I still believe language coming in can and does change everything. I take comfort in the fact that his score on this test was not very high. I take comfort in the fact that I see parents who have or are recovering/reclaiming their children using biomedical intervention and therapies such as ABA and floortime. I know this is possible and I pray everyday that will be the case for us. I have been trying to have the attitude that I will do all I can do on my end and leave the rest in the hands of God.

I have been so worried, on another level, about whether it is right to tell others or not. I am not ashamed of my son. I am not changing the way I think about him or how I treat him at all. I am worried me saying he is autistic will give others a license to think about him or treat him differently. I don't want that. So I am limiting who I talk about this with. There is still the "primary" family to tell but I haven't done this yet. Having this diagnosis, this label doesn't change the fact that my son is beautiful and has SO MUCH POTENTIAL! He is going to make it in this world and be whatever he wants to be. I don't want anyone to forget that. So how to end. We are pressing on. We are going forward. In the now, we will get services that will help us to the other side of the "spectrum." We are starting young and we are lucky for that. Everyone I talk too tells me that is the truth. We will be okay all. Don't feel sad for us. Don't offer your condolences. Don't mourn for our son. Offer instead your love and wait a bit....you will be celebrating in our joy in a little while. I know you will.

Dr. Sears Follow Up Appointment

2005-11-30T17:27:00.000-08:00

Hello all. It has been awhile since I have posted. We visited Dr Sears today and went over the tests we did back in September. Here is what I have found. Three tests confirm that Aidan has a gluten sensitivity. Why? Who knows. It is just so. So to Aidan's grandparents and great grandparents: NO GLUTEN!!!! So Dr Sears says gluten is out for at least three years and possibly more.

Aidan has a yeast overgrowth in the gastrointestinal tract along with some bad bacteria as well. Dr Sears would like to see his (we will call stool s so I don't gross everyone out) s increase to two times per day. Once we are there we will begin a prescription of Nystatin (for yeast). If we don't get there (through various things like calcium, vitamin C, benefiber, and aloe juice) he will have to do an X Ray. We will do another s sample to see where we are. Then on to Glutathione cream which is a very mild chelator.

Other things discussed were his iron count being low and copper being high. So we will either supplement with additional iron or change our multivitamin to Dr Neubrander's new multivitamin which includes necessary iron.

One last thing was the measles virus is somehow active in Aidan's system from his MMR vaccination. This part I didn't really understand and should have written more. He said giving Aidan Cod Liver Oil with the vitamin A would help this issue. We went over all the testing in detail and he set out a plan for us for the next several months.

We also discussed behavioral therapy and its benefits. We have come to the conclusion that this is what is best for Aidan. He lacks the ability (for the most part, this is not 100%) to imitate. There are select times and instances he will imitate but never is it consistent. I have read a few books and feel sure in the decision to add behavioral therapy to Aidan's schedule. The two books I have read are: Let Me Hear Your Voice and A Real Boy. I totally see Aidan in Catherine Maurice's (Let Me Hear Your Voice) son, which is her second child that had autism. However this book was written and the kids were toddlers in the late 80's so the information is somewhat outdated. A Real Boy is very new and is a great book, but I didn't feel that this child was representative of my son. The writer of A Real Boy is local in LA so a lot of the people she mentions I can get in touch with to help out. It is funny or sad if you look at it another way, that the only people to write about behavioral intervention have been those on the "wealthier" side of life. Both of these women had husbands with very high end jobs and could pay "up front" for ABA (behavioral intervention) services. It would be nice to see the perspective from those who have to fight first to get services because they don't have the money to pay "up front" for anything.

I have been in communication with several different ABA service centers and am trying to pursue getting approval for ABA. The regional center would like to wait until they have an evaluation from an approved behavioral psychologist. We do this tomorrow. If he diagnoses "autism" then it is probably a go. Otherwise I will have to give them a report by a noted pediatric neurologist we saw several weeks ago who said she would put "Aidan" on the spectrum. Once Aidan is three and we have to go before the school district, I don't think it will be easy to retain ABA services. More than likely it will take an attorney (yes more money!). But we will have to climb that hill when we get there. I am trying to take this day by day. I know this is right for my son. I just feel it.

I guess it is a confusing jump to be discussing ABA as it usually relates only to autism. Whether or not Aidan truly has autism is not relevant to me right now. We want to get him the services he needs and those that fit his individual self. That is the goal. If it means they want to give him this "label" right now to get those services, so be it. Again we stick to the original statement we made that autism doesn't have to be a life or death sentence. We only have one child and early intervention is key. So this where we are.

Some Test Results..some Updates

2005-10-13T01:08:00.000-07:00

Well we have gotten a few test results back. I have made an appointment to go over them with Dr. Sears. From the test documents I have received I have learned two things. One is that Aidan has a yeast overgrowth in the gastrointestinal tract. Two is that he does have an "allergy" to gluten. Though Dr. Sears has not said we were to go gluten free (only casein free) we have done so anyways. I will write more on the tests when I have had the appointment with Dr Sears. This isn't until the end of November so bare with me. I will say that I am glad I followed my gut instinct (you see, there is a brain gut connection!). I know we are on the right track. I haven't been able to successfuly explain to others why this is all so relevant and important so my job now is to do more research so I can successfully explain the connection. I need to buy (instead of just using the library) Children with Starving Brains. There are some answers in that book and hopefully armed with this resource I will be able to explain myself better next time.

Aidan began last Monday at Casa Colina for OT (occupational therapy). They wanted him also to go into the Early Start Program. Initially they wanted me there from 9-11 for Early Start and than OT from 11-noon. I should have known this was too much for Aidan. So I opted out of Early Start and we have OT from 11-noon Mondays and presently Tuesdays. We are supposed to have a teacher come out soon through Casa Colina as well through their home program. We are awaiting approval on this. I have mixed feelings about all of this as of right now. When we go for speech therapy it is child led and play based. Well OT wants to bring about more indendence (which is good!) but they are very much focused on adult led activity (at least a particular therapist we have seen this past week). Let me just say the therapist wanted Aidan to complete a task and he was not having it. There was a large room with other kids and he wanted to be with them. She physically held him down to try to get him to finish. He started crying and it was something I was completely unprepared for. I think it is really confusing for a child to go from having an environment where he is in control to one where he is so very much not in control. I am still trying to sort this out but have learned that I need to be an advocate for my son and I am the director (so to speak) of all of his therapies. I think I will have to sit down and explain this and hopefully formulate a plan that will work for the benefit of Aidan. That event just happened this past Tuesday so I am still a bit shaken about it.

On a positive note, Aidan has been babbling a lot and jargonning a lot this past week. Today I was starring off into space at the kitchen table and I see him out of the corner of my eye trying to get my eye contact by tilting his head and looking at me. I smiled at him with an apologetic smile (I am ignoring you my cute guy!) and he smiled a huge smile back at me. It's great when I get wonderful eye contact, an empathetic look and a gorgeous smile all within a few seconds. This makes my day! We put in a swing set and I go out and swing Aidan a few times a day! You wouldn't believe the amount of sounds and babbling that comes out of this boy's mouth while he is in motion. I started whistling a toon while swinging him and he looks pensively at me in amazement. He has had a lot of laughter this past week and has been somehow more "in tuned" to what is going on around him. That's just a brief overview. Take care all!

Power of Parents

2005-10-01T17:42:00.000-07:00

Power of Parents

I am really excited about this rally in D.C. So wish I could go. I am there in spirit though. Even though I don't believe my son has autism, I do believe he may benefit from the protocol many autistic children benefit from. I am sure I have mentioned this in the past. I should also note (in case anyone may be concerned about this) I do not consider autism either a life sentence NOR a death sentence. Each child is unique as is their reaction to what may or may not have caused their autism and or speech delay or disorder. As Dr. MacDonald has said, autistic behaviors can change over time and with maturity. I believe this. Many of the things my son was doing a few months ago have disappeared (not as much arm flapping when excited at all). I consider parents of autistic children my allies and receive so much help from their advice. Each of us that have children with expressive receptive speech issues or autism or sensory integration issues have a unique child and unique battle. I believe it is helpful to band together rather than to branch off into distinct groups in fear of one label or another. We all have so much to offer one another as parents in unison! I will leave my sentiments at that.

Just wanted to give an update on where we are. I went to www.tacanow.com to get some recipes and a grocery list to have Aidan go casein free. We, for the most part, have him gluten free as well. It just felt easier to do both at the same time. Trader Joe's doesn't really have a lot of what I need. I have had more success with breads and pancake mixes and such (Bob's Red Mill) at Henry's. I was concerned Aidan would not like the pancakes because they don't have the ingredients he usually loves! I was so wrong and so glad that I was. He ate his four pancakes then some of mine as I answered the phone. He got down from the chair and as I put two more small pancakes on my plate he got back in his chair to sit there and wait while tapping his fingers on the table. It was funny! But I gave him a few more bites. That is wonderful that he still likes these pancakes and has that need fulfilled for them in this mix! Thank the Lord they are building a Henry's in Rancho Cucamonga and it will be open in a few days! We have done really well and we began this on Monday September 26th. On the 29th of September Aidan also started on the acidophilus powder. Here are some of the changes I have seen in Aidan. He seems to be more relaxed and less in need of having the television on (that sounds bad but he was a lot more short tempered and moody before and tv kinda calmed him down). He can concentrate on doing an activity rather than getting bored or rather watch television. He also seems to have more noises and babbling than before. This is just the beginning but we are definitely seeing a difference in behavior.

Also on a different note, we were approved by Casa Colina (out of Pomona Valley Hospital) to go to their Early Start Program 2 times a week AND receive occupational therapy two times a week. You don't want to know how many times I was on the phone with Casa Colina hounding them for services! This is funded through the Inland Regional Center AKA Early intervention. The occupational therapy is so important and this is the perfect place for it as their occupational therapists focus in (and many are certified in or getting certification for) Sensory Integration. I have previously mentioned Aidan is a sensory seeker and according to his floortime center (that does speech therapy) it is necessary to get the sensory stuff taken care of before language can come in. I was told by Casa Colina that because the Regional centers don't pay that much for their services (for OT), usually they don't take the regional center kids anymore. HOWEVER, if a child is approved for both the Early Start Program (like preschool for two hours with Mom AND Dad there) and Occupational therapy then they will now give them services because the Regional center is then paying for two programs. So we were very fortunate as this JUST changed over and we were pushed to the top of the SUPER LONG waiting list. We will begin this Monday October 3rd and go two times a week from 9-11 am Early Start Program and from 11-noon, Occupational therapy. We are very blessed that things worked out this way and I have no doubt this blessing is no accident!

DAN! Appointment

2005-09-11T17:34:00.000-07:00

Hello all. Well this past Wednesday (9/7/2005) I finally was able to take my son to the DAN! doctor, Dr. Sears. Below I will put the email he sent and wrote during our visit in email form (which was very convenient for me). Right now we are waiting to go do the blood tests on Monday probably. For urine I was given a bag that is supposed to fit over the "private area" to get the urine and send that in. These tests should be covered under insurance as Great Plains is vendored with Blue Cross PPO so we shall see. Otherwise the tests to pay alone would be near $550 (Ouch). The appointment was $350 and I have submitted the claim to insurance and we shall see what reimbursement we get there. After tests Monday we are to go cassein free. He has not wanted us to go glutten free yet so just cassein for now. This includes dairy items. Then each week begin the supplements one at a time I have listed below. The supplements are very natural and nothing too extreme. Dr. Sears mentioned chelation (in the form of a cream) a few months off and we will be thinking about that if nothing changes or progresses.

Begin Dr. Sears email:

After the blood and urine are out of him, go casein free very strictly.Good website is http://gfcfdiet.com/

CASEIN FREE DIET This is a protein present in cow’s milk products:
Cow and goat milk Butter Cheese Yogurt Whey protein Caseinates
Many prepared, frozen, dried or canned foods and soups contain powdered milk, cheese, or whey. Baked goods and snacks may also have casein ingredients. Read labels carefully and get to know what every day foods are ok.

Alternative foods include:
Rice milk – Pacific is a good brand Soy milk – careful, allergy to this is fairly common Almond milk Eggs and mayonnaise are fine. Dairy-free yogurt, cheeses, margarines (look for whey though) and ice creams Kirkman’s Fortified Functional Foods – several GCF food mixes.
Resource – “Special Diets for Special Kids” by Lisa Lewis, Ph. D, 1998. A good book with many ideas on how to feed a child GCF.

Just FYI:
GLUTEN FREE DIET This is a protein present in grains:
Wheat Oats Barley Rye Semolina Spelt Triticale Kamut
These grains are in most prepared cereals, breads, flours, baked goods, and instant mixes. Again, reading labels is crucial. Some natural and artificial flavorings, certain spices, gravies and dressings may have gluten. If there is an item your child loves, and the ingredients are unclear, call the manufacturer.

Unfortunately, wheat flour is used in many ways as an “anti-sticking” product without being listed as an ingredient. Utensils or containers used in manufacturing may be contaminated with flour or gluten. Also be careful in your own kitchen when you prepared food.

Alternative grain sources include:
Sweet rice Brown rice White rice Tapioca Rhubarb Bean flours (Garbonzo and Garfava) Lentil Corn
Resources: as above under casein.

ADDITIONAL FOOD PRECAUTIONSHere are some basic guidelines to consider:
Eat organic as much as possible to avoid pesticides and hormones. Avoid fast foods, refined sugars, artificial sweeteners (aspartame) and colorings, MSG, preservatives. Try to eat a diet lower in sugar.

SUPPLEMENTS: Start each of these is this order, each one 1 week apart.

Acidophilus Powder – twice a day in liquid or small snack (as long as not hot), not a large meal. You can buy any one from a health food store, as long as it is casein and gluten free and has Lactobacillus and bifidobacteria. Take about ½ the adult dose daily.

Pro EFA – continue, go to twice daily.

Child Essence vitamin and mineral – 1 cap twice daily (take a week to work up to this dose).

B12 shots with folinic acid and NAC 1250 mcg once a week. If you think the shots really help, but wear off before the week is up, you can do as often as every other day if needed.

TMG from life extention http://www.lef.org/newshop/items/item00349.html
500 mg/rounded scoop.
Dose give ½ scoop once each morning. After a week give each morning AND afternoon.

I want to see you when you’re on all this – about 5 weeks from now.

End Email.

That is it for now. I will update as things progress. I am very hopeful about all of this and feel good about it. Dr. Sears seemed very nice and we really liked going to his office as did Aidan. It meant we could go to the beach and play in the water after the visit. We had lots of fun. Believe it or not, this past week was the first time at the beach all summer. We went to Capistrano (too rocky) and San Clemente. I would pick San Clemente because there are no rocks. Plus Aaron and I got to see where we spent our honeymoon right across the street from the pier. Ah, memories.

It's Floortime!

2005-08-19T01:11:00.000-07:00

We started going to a floortime based speech therapy center at the end of July. Aidan really enjoys his time there. We go two times a week. I have previously described this place in another post. During the past two sessions his play has begun the process of being more "organized." An example is that before he would get a ball and constantly throw the balls. They have a Chicco Castle Pounder and a toy called Ball Party. You have to drop the ball in a slot and watch it go down or with the pounder, pound it with a hammer. Aidan has been taking the time to actually play with these toys. They also have a toy that is something like Weeble's with rolling webbles. He puts the little webble guy up at the top of the slide on the toy to watch him go down. He is playing with a purpose. This is a good step in the process of helping with organization and motor "planning." I have mentioned before that Aidan is definitely a sensory seeker and has many characteristics that would put him in that category present. This involves an immature nervous system. There are activities we are doing at home to help fulfill his sensory needs. I know at first glance it sounds a bit like "quackery" but it really ends up making a lot of sense to us now in understanding how our little man works. We have a mini ball pit in Aidan's room. He loves the sensation of lying in a pool of balls and loves to stick his foot up and lock at it for a bit. We also now have a trampoline that is used in Aidan's room and in our living room. As soon as our backyard is "child-friendly" we plan to add more playgym equipment like swings and such. In the meantime, some activities we enjoy indoors are, jumping on beds and couches, getting all pillows off the couch to make a "launch pad" and jumping from the couch to the floor of cushions or from the trampoline to the floor of cushions. Aidan takes his Daddy's hands and jumps from trampoline to cushion floor just like he would jump in the pool! So cute@! I know these are all things children are told never to do. Like, never blow bubbles in your drink. Um yeah, we encourage it because it helps with a child learning "where" their tongue is and how to use it. A lot of things kids are "forbidden" to do are exactly what sensory seekers or hyporeactive kids NEED to do to thrive. Currently I am reading the Out of Sync Child and the Out of Sync Child Has Fun which gives lots of ideas for home based activities you can do for sensory issues in children.

In summary as to how this is all connected, when a child has sensory issues it can interfere with language acquisition and other areas of development. The fact that Aidan flaps his arms when excited (and only when excited) is stated as an example of a child who is activating his senses to get ready for something--like going to a place he knows or one where he knows fun will be had and such. Toe walking is also a sensory issue with the child wanting to feel the sensation one has with walking in a different way. These are some examples. Our job is to help fulfill his sensory needs through various ways. This is all new to me and I am learning so much right now about this all.

Some new updates: Aidan is waving goodbye (sometimes with a backwards wave) to others, pointing at times (sometimes looking at his two indexed fingers as they are both in the pointing mode) and says Na-nuh for "banana." He seems to making an effort to imitate more to some extent. I pointed and told him to go to the living room and he pointed in the same direction (but didn't go to the living room per my initial instructions). He gestures and makes a lot of sounds for when he wants a certain food item or a drink (making noises and motions with hands towards the cup area in the kitchen or brings me his cup with lots of noise). He has gotten much better in terms of eye contact. We now to go see Dr. Sears (DAN!) in Capistrano in September as our insurance changed. Aidan is still a laughing, giggling and loving boy too. Each night we say our prayers as a family and thank God for the changes and progress (big or small) in our son. We see it and our thankful. We are also thankful that we have encountered such wonderful people, like our Early Intervention coordinator who has helped us get the wonderful services we have through the very pricey places we get services through. I know that we are doing everything in our power to help Aidan, and that in and of itself is a weight of my shoulders. At this point I am striving to let go of this and give it to God. I am doing what I can on my end and I pray that God will take it from here.

James MacDonald, author of "Communicating Partners"

2005-08-02T01:27:00.000-07:00

We went to see Dr. James MacDonald in Anaheim this past weekend. I brought my son Aidan age 2.1 and my husband Aaron too. My friend came along with her daughter (almost five) and another daughter (14 months) and her husband. When I had called Dr. MacDonald and told him about my friend he suggested I bring her along and her children too! So we all met in a conference room that was equipped with padded chairs, nice window with view kids could see, and lots of snacks and water and other beverages. Dr. MacDonald spent quite a bit of time talking first to my friend. I will not go into detail about that. I will discuss what I talked to him about or what issues came up as well in regards to both my friend and myself. He asked me what I felt were Aidan's issues. I told him he flaps his arms when excited, toe walks on occassion, has some sensory (grind teeth when excited or on sensory overload or something similar to this, uses his mouth--very oral still), does not point. Those were the main issues. He told me he had bad news: Aidan would never be in the ballet. We laughed and it made me feel good because these characteristics are usually taken very seriously by other "professionals" when I give them.

Most of the things he told me were pretty light hearted and he felt the fact my son was non verbal really wasn't an issue right now (he said something like "Ah he's only two years old!"). I told Dr. Mac Donald how I and hubby were repeating sounds my son makes and he explained turn taking or exchanges with taking off a sock and putting it on Aidan's shoe to see if Aidan would take it off and then Aidan put out his hand to put the sock on and this was "taking turns." He encouraged talking back in forth in the child's language and then giving words for actions too. THE KEY HERE IS LANGUAGE IS ON TOP (goal or next level to the pyramid) AND INTERACTION IS THE MOST IMPORTANT THING (foundation)! He encouraged responsive rather than directive teaching style. If a child is licking his thumb you say LICK (action words) He encouraged being playful (acting like a child) and body contact (My husband has always been a natural at this, I need some work). Like perhaps a foot massage or something your child could handle would be good. He encouraged matching by acting in ways a child can act and putting a word on it.

We discussed discipline. He said ignore behaviors you don't want to see. If it is dangerous (the behavior), they "go to jail." You hold them down or just hold them while looking away and don't talk or give attention. But when they do positive things, pay attention more!

Aidan was very very social and interactive with the fourteen month old in the room. If that fourteen month old was not there, I dont think my son would have been as social as he was! They chased each other around the room, played peek a boo in the curtains, studied the view outside the window of the pretty water and palms and did some repetitive MA MA sounds---the little one even hugged Aidan. In the past month to two months Aidan has changed a lot. For example: he turns his head when he is called, smiles a lot more now, has waved a few times hi or goodbye, gestures with whole hand, gives tons of eye contact now, babbling a lot more now, gives kisses, obeys when I tell him "STOP" as he is running next door (to see his favorite dogs), shows more emotion and maybe even empathy at times (not as self absorbed as he once was). Now this could be maturation along with the help of ProEFA I give him daily (omega fatty acids).

As far as what was revealed about myself and perhaps other women and some men in our situation was pretty enlightening. First of all, if a woman is a stay at home mom and she takes the "not talking" to heart there can be a reason behind it--that woman feels like she is failing at her job. That is so true (the feeling I mean, not the failing at their job part). The mother or wife (stay at home in our case--friend and myself) have fear. The husband or dad does not have fear....of the child's future. Also, we need to make our communication a way of life and living and not think of it as work. We, as parents, need to start focusing on the positive and not the negative. I mentioned to Dr. MacDonald that this was something parents started out doing but once we spoke to professionals, that all seemed to change. Why? Because professionals only focus on the negatives or "red flags." He said not to think of red flags as red flags but as "looking for business". Whatever the professionals can point out is wrong with your child, that is a way for them to make more money off of you and your child's "perceived" problems or deficits. We discussed autism a bit and moreso about how the behaviors can be changed or perhaps even a child could grow out of the behaviors as they mature and perhaps as language is acquired---it can be a "developmental phase". That is a new concept to myself! Another new concept: a developmental delay is NOT FOREVER.

The final thing we discussed was learned helplessness and how it relates to our speech delayed children. Dr. MacDonald suggested a book by Martin Saligman that relates to this issue. I guess we tend to "baby" our speech delayed children and that is not a good thing because that in itself can hinder development!

I felt very empowered when I left. I commented to my husband that this is the first "professional" we have seen that has taught us how to think about our son in a completely contradictory way than any other professional we have seen thus far. For example, when I see a developmental pediatrician, she wants to ask questions that only delve into the negativity or "red flag" world of my toddler and asks nothing, ABSOLUTELY NOTHING, about the strengths and positive behaviors he has. In fact, when I mention them, my words are ignored. This messes with your mind as a parent. You learn to think like them. That's not good. I have changed the way I will, in the future approach this issue when I speak too (do I have too?) speak to another professional about my son. We will cover the positives! If all he/she looks for is the negatives, how exactly does that service my son? It doesn't. You gotta know the whole child and not just one fragmented part of him.

I had a great time. I was so glad my friend came and our children behaved so well together the three hours (YES THREE HOURS!) we were there. Dr. MacDonald was so cool about it too. He never rushed us or made us feel like it was time to leave. He signed our books too (what a Rock Star!) He gave us a free DVD that accompanies his book by showing how to do what he writes about. It was all extremely generous of him and as you can see by my very long post, I surely learned a lot....and it will be implemented in my son, my husband, and my interactions!

Thanks Dr. MacDonald!

Thimerosal/Mercury IS related to speech delay and disorders

2005-07-23T22:55:00.000-07:00

Kirby wrote a book about it. A Kennedy wrote an article about it. The word is out. Thimerosal containing vaccinations including flu shots do indeed have a direct relationship with speech delays and disorders at one HUGE end of the spectrum. Thimerosal also has a relationship with autism on the other end of the spectrum. I was watching Robert Kennedy on Comedy Central with my husband when he said those words. I realize my son could have been poisoned by mercury that is within the confines of thimerosal. Most of the vaccines Aidan had through Kaiser were mercury free except some had "trace amounts" of thimerosal. However, I had a flu vaccine while pregnant. Aidan had one at 6 and 18 months of age. If you will recall, the media hyped up the flu season during these past years and made sure to do many stories on pediatric deaths surrounding the flu. Not only that, Kaiser posted flyers everywhere during the winter season of 2002, 2003 and 2004 encouraging expectant mothers and children aged 6 months and above to get the flu vaccine in order to protect them from the flu. I was not aware until quite recently that thimerosal was so dangerous. I thought I was protecting my child's health rather than perhaps harming it! Obviously it is still a subject open for debate. Note: Each flu vaccine contains 25 micrograms of mercury---or up to 18 times over the EPA limit.

We have decided to visit a pediatrician who also specializes in bio medical treatments. We will first see him as a pediatrician and see if he thinks testing is in order--specifically mercury testing. The next step will be to see him later that week as a DAN! doctor (Defeat Autism Now). This does not mean Aidan has autism. He has a speech delay at this point, however, many treatments that help autistic children can also help speech delayed children as well. These are all based on the primary assumption that mercury is the cause of the developmental delay in either one of these cases. A mercury test can usually be completed with a hair sample as a blood test is useless. Some things that might be recommended are: GFCF diet, MB-12 shots, DMG or TMG with folic acids. Chelation may possibly benefit as well. (Do you feel like you need a dictionary or something to understand the words I am giving you? Yeah me too. Feel like I should receive another degree after all of the information I have had to learn through this process!) Aidan is already taking ProEFA daily which is omega 3 and 6 and borage oil. It contains the approved dose of DHA and ARA which is in infant formula (i.e. Enfamil Lipil or Similac Advance). Omegas are something everyone should take as well. I will update as I know more from this pediatrician/DAN! Practitioner over the next several weeks or so.

Also, some states have taken a MUCH NEEDED stance against thimerosal containing vaccines. California has legislation which will make this illegal in January of 2006 for both pregnant women and infants. I am happy it will change the future for our children. Obviously some intervention may be needed for the damage which thimerosal/mercury might have done to my own child's speech delay.

Some things to consider about the book David Kirby wrote--Evidence of Harm explores both sides of this controversy, which has pitted families and their allies against the federal government, public health agencies, medical academies, and powerful pharmaceutical giants. It examines: Â· Story of Thimerosal: a mercury-based additive approved by the FDA in the 1930Âs as a vaccine preservative and never subsequently tested by the Agency Â· Increase in reported autism cases and apparent parallel to the increase in number and frequency of Thimerosal-containing vaccinations in t1990s90s. Â· Private meeting at which FDA, CDC, medical and pharmaceutical company representatives discussed data on neurological childhood disorders related to mercury in vaccines Â· Mysterious rider to the 2002 Homeland Security bill which would free drug companies of liability in lawsuits regarding Thimerosal Â· State and federal lawsuits filed by families against the drug makers seeking compensation for the lifelong care of their ill children Â· New biological research indicating a direct link between Thimerosal exposure and neurological disorders Â· Preliminary Federal investigations currently underway into allegations of fraud, malfeasance, and conflict of interest at pharmaceutical companies and among officials at the FDA and CDC Â· Recently discovered CDC data showing a shockingly high correlation between Thimerosal exposure and autism, ADD and other childhood disorders.

Kisses Kisses Kisses

2005-07-23T22:40:00.000-07:00

Aidan kisses on Daddy today! Daddy purses his lips and makes the kissing sound to which Aidan comes over with mouth wide open and presses his mouth to Daddy's as they kiss. He did this many times with Daddy and Mommy too today. Lots of sounds today. Also lots of signing for more and say "mo" when wanting more cereal at Mimi's for dinner this evening. Spent a long time this evening allowing his Poppi to lay on him and hold him and Poppi eventually fell asleep on/holding Aidan tonight as well. This was a day for many intimate interactions.

Aidan the later bloomer

2005-07-22T22:21:00.000-07:00

"Leo the Late Bloomer" by Robert Kraus

Leo couldn't do anything right. He couldn't read. He couldn't write. He couldn't draw. He was a sloppy eater. And, he never said a word. "What's the matter with Leo?" asked Leo's father. "Nothing," said Leo's mother. "Leo is just a late bloomer." "Better late than never," thought Leo's father. Every day Leo's father watched him for signs of blooming. And every night Leo's father watched for signs of blooming. "Are you sure Leo's a bloomer?" asked Leo's father. "Patience, " said Leo's mother. "A watched bloomer doesn't bloom." So Leo's father watched television instead of Leo. The snows came. Leo's father wasn't watching. But Leo still wasn't blooming. The trees budded. Leo's father wasn't watching. But Leo still wasn't blooming. Then one day, in his own good time, Leo bloomed! He could read! He could write! He could draw! He ate neatly! He also spoke. And it wasn't just a word. It was a whole sentence. And that sentence was..."I made it!"

I think that is a pretty inspirational children's story. I too feel I shouldn't stress so much about Aidan and at the same time, I want to do all I can to help him develop rather than sitting by and waiting. Some say let nature take it's course. I say sure. I will. But that doesn't mean I won't want to get involved and help too.

I wanted to share an update on Aidan. He continues to improve in sounds. Aaron and I continue to mimic his sounds and use turn taking skills. Aidan and I have begun to dance in the kitchen and he will hold my hands and let me dance him around and wave his hands and hips IMITATING mommy. Also, two days ago we watched Teletubbies and the children were waving goodbye. Mommy waved goodbye and said goodbye to the kids and Aidan did too. Yesturday we visited a center for OT in Colton and the OT waved goodbye and Aidan did too. Today he waved to his Mimi goodbye. When Mommy and Daddy came back from a date today Aidan put up his hand and said something that sounded like Hi! He behaved very well for Mimi while she babysit and even when he woke up and we were not there. He has been smiling at his family and giving tons of eye contact. He has been paying attention when we tell him something and consistently turning to look at us when we call his name. When we tell Aidan No with a stern face he has been getting a sad pout on his face and then whining crying. Before it was a smile to the NO or even a laugh. These behaviors were, well many were NON EXISTENT a few weeks ago. A few months or days can make a lot of difference in a developing child!

Communicating Babbling Partners

2005-07-19T01:47:00.000-07:00

When Aidan was about 10-12 months old he babbled sounds like dada and mama. Those sounds seemed to disappear when he was a little after 12 months old. Now at first glance this too may seem like a "red flag" because of "loss of language" but I have had a realization. At about 12 months old, hubby and I stopped babbling with our son. We believed the experts in child-help books that state it is time to stop using baby talk (or babbling) and use real words. Well my son wasn't ready for real words and just decided to stop his communicative techniques and he stopped babbling. Fast forward to now and I am reading Communicating Partners. I have learned we are to imitate Aidan's sounds and this will bring about more sounds. My son has begun to babble more and more everyday. Sometimes he jargons or brings together a string of babbling sounds. He uses different intonation and sometimes hand movements (not to be confused with hand flapping). I copy these. Daddy copies these. Mimi and Poppi have been instructed to practice this with Aidan as well. He is a great performer. He will wait until all at the table are copying his gestures (clapping or what have you) until he moves on. In fact he will eye the person who is not "cooperating" and keep his eyes on them until they do so. He dominates the "conversation" without conversation! Ha!

Since this has begun the past week or so other gains have been made. Aidan has increased eye contact substantially, responded to his name on a more consistent basis and also been smiling at me every time I catch his eye or turn around in the car while driving to look at him. If we happen to be watching his show on tv, and I turn to write on the computer he will look over at me and start babbling to get my attention until I turn my head back and pay attention to him. He will do this several times in a row. It's pretty funny and a great connective link between the two of us. These are just a few of the gains I can think of that seem to coincide with our "communicative" attempts with Aidan. Our communication increases and continues to progress. A foundation is being laid for the next steps which will eventually lead to speech communication.

SHSSSHHHH....It's a Secret

2005-07-14T02:50:00.000-07:00

Well the word is out. Well yes a pun was intended. My son is non verbal. He is speech delayed. He is without words. If we were in an Asian country and I said this about my just turned two year old, they would say I was crazy because two isn't considered late talking age there AND they would say BOYS who talk late will be smart later in life. But we are not in an Asian country, we are in America. Land of the free, home of the high teched, want it now, want it my way, you're going too slow, can't slow down--break? What's a break?, what's a SIESTA (nap people--yes other countries do have this for adults too), land. For awhile now I have bought into this. I wanted no one to know I had a late talking son. It became apparent very quickly that the gig is up. When my son is around other talking toddlers that are his age or even younger, the questions (sometimes not all the time) begin to come flowing in. Is Aidan talking yet? Can Aidan talk yet? I don't have a good answer. I just say No. I guess there is no good answer except No. But I still feel like ringing the neck of the person who asks so please don't go there. When he talks you will know. I am not a mom you will EVER hear say, Oh I wish he would just shut up! I wish his first word was a cuss word, I don't care, say it all the time everyday even (JK) But seriously, parents who have normal talking toddlers HAVE NO IDEA of how it is for parents of late talking toddlers---Simply no idea. We do not take language or any form of communication for granted. It is a blessing and you have MY WORD I will always remember it as such@!

Sometimes (relatives) will focus on trying to get him to imitate. My son, as explained before, is not a good imitator. He does not perform. He is not a trained seal. I made a t shirt for him for his birthday party that said just that! He does not wave hi or bye or say those words or any of the other cutesy things we see toddlers do. I hope one day he might do these actions but I can't hold it against him now. He doesn't make eye contact with everyone he encounters, but if a pretty waitress comes in our direction, he will lean his head back, over, around, under to keep his eyes on her as she passes by. I guess what I am trying to say is that language is a part of gestures and imitation too. Without the foundation of gestures and imitation language is not coming in yet. So, I say he is not a performer because he is not yet. Not in the sense I mentioned above.

I guess I wanted to keep this all hush hush because maybe I wanted to wait until I had a diagnosis. When I realized that getting a diagnosis this early serves no purpose right now (especially since he will be getting all the help he can get from us and outside help), I didn't know how much to say or who to say it too. I didn't know if I should go over all the things we have been through as truly no one knows about it. I didn't know if others would begin to judge as I have done in the past myself and my husband (Aaron and God forgive me). I decided it was time. Maybe by writing all of this down I can explain it to others without having to verbally dialogue about it, which I am not ready to do AND maybe I can help someone who is going through the same thing or maybe they can help direct me as well AND LASTLY now I will have an online journal which chronicles this journey. I have faith that things with TIME and HELP and ALWAYS PRAYER will work out beautifully for my lil angel Aidan (my schweet man.)

Strengths and Deficits or RED FLAG WORLD

2005-07-14T02:13:00.000-07:00

In my ever so recent "red flag" experience. I thought I should take the time to expand upon what I mean by red flag. So I will start with the negatives or red flags or defecits my son has and end on the positives.

Here are some of his red flags: he is non verbal, he toe walks about 60-70% of the time, he flaps arms when excited, he likes to test his peripheral vision, likes to open and close doors, he does not immediately look to you when you call his name (though this is changing in leaps and bounds lately), he does not wave hi or bye, he does not point (though he does gesture with whole hand) at body parts, pictures (starting to change), or any of the other things they measure the pointing by. These red flags may be seen in talking toddlers. I have, in fact seen many talking toddlers do these things. However, because they are talking, these behaviors are not frowned upon. When a toddler is not talking these "red flags" indicate there may be something more at hand--like mainly some kind of diagnosis (specifically PDD Pervasive Developmental Disorder and/or Autism). Many late talking toddlers mature past these "red flag" issues when language comes in.

Now onto the better part. My son's strengths. My son smiles A LOT. My son laughs A LOT. My son will come and hand me his cup when he wants more juice and tell me some kind of gibberish which means he wants more. My son will turn on the tv when he wants to watch it and turn it off when he does not. He will go by his booster seat when it is time to eat and begin to fiddle with the booster straps. He will grab my hand and lead me where he wants me to go. He will reach out his hand for what he wants at the table or in the direction of the counter and let out some gibberish. My son is recently babbling more and varying his noise (with lots of recent imitating from Mom and Dad too!). My son has started to give us much better eye contact in the past month. Today was one of his best days as far as eye contact. A few weeks ago with his Mimi and Poppi, they too saw he was giving great eye contact and was actually kicking the ball with his Mimi and interacting with her. A few weeks ago my son pursed his lips to kiss his great grandma. My mom was a lil bit jealous of that. That has not been repeated. My son bows his head at night when he tell him Kisses to allow us to kiss him. My son loves to play outside, go on playgyms, swings, stairs, slides. He loves to climb hills and come down hills. He is on the go! He loves to play with his Dad that his dad is a bear chasing him or hide n seek. He plays soccer with me. My son loves to play with certain older kids. One in particular is his older cousin Thomas. He really comes alive when around Thomas. My son loves to visit the dogs next door. He will put out his hand for them to lick or wait for them to come to him and then back up a bit. Aidan loves to swim. He went for swimming class for two weeks and he jumped right to his Daddy everytime. Other kids were crying when they got in the water or too afraid to jump to Mom or Dad. Other kids cried when they were dunked under. Not my guy. He enjoyed every minute. He will pretend to talk on a phone or remote control or whatever is handy. He will imitate marching with me if I am marching and sing "we are the dinasours, marching marching.." If I clap my hands he will clap his. He can play peek a boo where he drops the blanket or towel down and waits for me to say the words PEEK A BOO. My son knows his shapes and colors pretty well. We bought educational toys we saw EI use and he has mastered many of them. My son will come up to me when I am doing something else and start talking to get my attention or talk gibberish until I look at him and smile and say Hi and he will smile back and lay on me. My son loves, without A DOUBT, his Mom and Dad. Of course, we LOVE HIM TOO! I will add more as I think of more. This is all at age 2.1.

In Pursuit of A Diagnosis or In Pursuit of PROFESSIONALS

2005-07-13T23:27:00.000-07:00

My son Aidan was never a babbling baby. I would see other babies as young as 2-3 months old babbling constantly. Not my son. He would simply cry or sleep or eat or excrete. When he was about 10 months old he did say Ma Ma and then soon after Da Da. For some reason those words went away and he no longer said them.

At his 18 month check up, I was a little concerned because the doctor mentioned we may need to have him checked out if he wasn't talking in the next 2-3 months. Then our insurance changed and I decided to just give Early Intervention a call myself. That was possibly the worst day of my life. My son scored low on every item except for motor skills. The teacher that was here testing him while he was in a booster chair (yes a booster chair!) had him played with educational toys I had never had him use. The two that were here were mentioning how very low his scores were and oh they are about as low as the boy they had just seen who was being treated for PDD (hint hint). I felt like they had just knocked the wind out of me. I was lost for a few days.

I decided it was time to see a pediatrician in my area. We went to the office when Aidan was about 22 months or so. She told me there was nothing wrong with him, those scores must be low. I felt a little better. She gave me a referral to a pediatric neurologist she knew to ease my mind. I gave his office a call and the wait time was until June.

So I made the appointment with that pediatric neurologist and sought out another one. I found one who had an appointment within a short wait time. Her office was one that looked primarily for adults as there were no children's toys except in her office. She also said that there was no way the test scores by EI were correct and then she recommended getting a speech evaluation and an EEG. She did not think my son had PDD or autism either. She commented that the diagnosis of either was "very subjective." We went for both of these and had a relatively good experience. The speech evaluation went well. Aidan did score low in speech (well yeah!) but pretty high in cognitive area. The speech therapist or pathologist was very informative and not at all worried that my son would not catch up with help from speech therapy 2X a week--which was recommended. She too did not think he was autistic in the least.

We went back to see the ped neurologist who I had called to get results on tests and would never call back until she finally did only to say, something is abnormal with the EEG, you need to come in tomorrow. My husband and I went in the next day and the ped neurologist told us our son's EEG was "mildly abnormal" and that there was a "slight spike." We were questioned about epileptic activity. She recommended an MRI to rule out other issues and we left the office with her stating two things. One, my husband and I really shouldn't have more kids as this one would be a handful. We should get genetically tested too. Two, worst case scenario, my son would always need help throughout his schooling and probably not go onto college. She didn't want to give me the best case scenario because I guess that would give me too much hope. But oh, she still didn't think he had autism either.

If I had been in a depression when EI left that day, let me tell you my depression doubled the day this happened. Though I do remember as I was walking towards the parking lot to leave, I heard the Lord tell me "Everything is going to be alright. It's all in my Hands." That gave me some peace and I did feel better but I cried for a few days too. We scheduled the MRI for mid June, after we were to see the original referred ped neurologist.

In between seeing the ped neurologist, I got an idea to see a developmental pediatrician. I thought she could steer us possibly in the right direction and it was time for a well baby visit as well. This is the third most depressing visit thus far. This is the only person who has incessantly looked for the "red flags." Most parents of talking toddlers have probably never heard of a red flag. I am well versed in the red flags. Some talking toddlers have red flags and nothing is mentioned to parents because those toddlers speak. Well since my toddler does not speak and has some red flags, he is literally an instant target for diagnosis. This time the developmental pediatrician let us know that he has red flags and she did not want to give a diagnosis yet but he may have PDD. Here is the striking thing I learned from this visit: this "professional" only asked questions targeted towards learning about the "red flags" AKA deficiencies of my son. She did not ask or narrow in upon any of my son's MANY strengths. She even wanted to prove my son was not bonded with us. And she thinks she did too! She asked what my son would do if husband and I left the room. I said he would cry. She says, I don't think so. She said leave quietly one by one. So she engaged my son and said words to him as she played with a toy. He loved it, especially the counting with intonation (it just tickles him!). We waited out the door for less than a minute until she called us in. She said, See he didn't miss you at all. A "normal" child would have been scared of a stranger in a white coat but not your son. To that we say, you should have given him one more minute, we guarantee he would be wailing!

We proceeded to go to the ped neurologist's office only to make sure an MRI was warranted. Here is the kicker--he was not concerned with the EEG at all. He said it was no big deal. He said, sure go get an MRI but he didn't think it would show anything. He tested my son's fine motor skills, which I must say improved with Early Intervention's teacher that comes to our home once a week, and sent us on our way. This ped neurologist came highly recommended. But I must say I was not impressed. He left us waiting at least an hour in the waiting room and in the office (WITH NO TOYS). When he came in the room he did not speak but went straight for my son's file to read while in the room with us. He finally introduced himself. My son fell and he said Oh you can't be that hurt, you have enough padding (my son is a big guy). When I went to go by the table to wait to hear what he would say and take notes, he gave me a look that said you are crazy and asked what I was doing. I said I am taking notes because I won't remember everything you say. He gave me another puzzling look. When I left there I decided I would research and find a better suited ped neurologist to give us the results of the MRI and other testing they would do during the MRI.

We did the MRI in June the same week we saw the second ped neurologist. It came back normal. All the testing that was done is normal except for a high taurine count which when I get the rest of the tests they had to send away for (including fragile X!) I will make an appointment with a ped neurologist in Los Angeles.

The last professional we have seen was at a speech center in my area that practices floor time through Dr. Greenspan. The speech evaluation is done in a room that has a mat, an outdoor playgym indoors with swings and slide and fort area, a pool with balls in it at the end of the pool, lots of balls, lots of toys. The person doing the evaluation filmed my son while another speech pathologist interacts or plays with my son. She goes over to the pool of balls and begins to shake the balls and with varying intonation she says "Shake Shake Shake Shake." My son squeals in delight. Much of this evaluation was spent with my son laughing and enjoying himself. The speech pathologist has more energy than I have ever had and speaks with intonation (just try it, it's not easy!) throughout the two hour FUN evaluation. My son's scores on speech are still low--which would make sense as he doesn't yet talk! But the one doing the evaluation spoke of the fact that my son has an incredible amount of strengths. FINALLY SOMEONE SAYS STRENGTHS!! HALLELUJAH!!! She does not make a diagnosis, that is for a doctor to do. Frankly, I don't want a diagnosis. I just want help--through a speech evaluation. We hope to start this play or speech therapy within the next two weeks. In the meantime, we are having a well baby checkup the first week of August. With this pediatrician we will discuss vaccinations as well I HOPE as supplements that may help my son in jumpstarting his speech. Which side note: these supplements are used primarily for autistic children or children with PDD but I am hoping I will be allowed to use them for my son as well. Will update later on this issue when i know more in August.

What I have learned about my experience this far has been that the pursuit of a diagnosis is not needed right now nor in a few months. What is needed is all the help I can give my son. Whether this be through speech or occupational therapy, home based therapy, and parent based "communicating partners" (J MacDonald). We have decided that if no progress is made in a year's time we will pursue going to Tennessee to see the Camaratas who are very skilled in detecting pediatric speech issues.

I belong to several support groups online and one of them has parents who have gone through exactly the same thing I am going through. Some of them have gone through it and seen the other side, they give me hope. Some of them are going through it and struggling just as I do, they give me comfort in knowing I am not alone. I have read through the Einstein Syndrome by Thomas Sowell and I do find many of the characteristics of "Natural Late Talkers" in my son. My grandfather was an engineer for Rockwell. My husband's grandfather was in a band and played four instruments. I played the french horn for many years. Aidan is a boy. Aidan is very very strong willed.

I am currently reading Communicating Partners by James MacDonald. He says that a child's best play partner and learning partner is his parents or caregivers. He describes how the interaction should be. I am copying my son's every sound. Today (July 13, 2005) it seemed he made more sounds than he ever has. I copied him all day and used his same intonation. The benefit of this has been: if I copy his sound, he knows I am hearing him and he is encouraged to make more sounds. When I copy him, hopefully he will be encouraged to copy me. My son's biggest weakness (or is it really?) is that he is not an imitator. It is very difficult to get him to want to copy anything I do unless it is really fun (like a marching song from Noggin). Other little kids you tell them, say fish FISH. Or wave hi or bye, they do and might say it too. Not my son. Never my son. So the first step is NOT to bring him into my grownup world but for me to join his child world (Are you thinking of Peter Pan and Johnny Depp..cuz I am!). I spent an hour doing this today. I got a lot of sounds out of my son today so that was wonderful. For the past two days we have been playing ball in the house (too hot out here and outside is under construction). We kick the soccer ball and I yell KICK or BALL. Lots of laughing, kicking and dribbling, but still no words. I am beginning to see, apart from the diagnosis craziness, that speaking is a matter of steps. For us it is literally taking baby steps. Often I want to pull my son into my world because I think that is the best way to teach him to speak. Here is the way I used to try and teach my son to speak: Aidan is playing with a square piece of shaped wood. Aidan, I would say, that is a square. He throws it. I am learning this is not the way to teach. I should grab another piece of shaped wood and look it as my son is. Perhaps even tap my piece onto his. That would make him laugh! He loves to bang things. Later I could take my shape and put it into the proper peg that piece of wood goes into and see if he does as well. I could say the word "Square" as we drop it in. So I guess I have to become a little more Peter Pan than adult for now. That's okay. I think it is more fun to be a child than an adult anyways!

Test of Faith

2005-07-13T23:25:00.000-07:00

I've always been a believer in God. I have put my faith and trust in him throughout my life with various bumps in the road. Soon after my son was born in June of 2003, my husband and I decided to start going back to church. We went solidly for six months or so and discovered it was not so easy with unruly baby in tow. Aidan did not want to be in the nursery. We tried watching it online a few times. We missed a few too. I still always believed in God and still wanted to trust Him and put my faith in Him.

A year went by of not attending or watching church. A year went by and still I had yet to pray or get into the Bible. A year has gone by and at age two years old my son is not talking. I wondered at first if this was a test of my faith. Am I being tested because only now I will call upon the Lord for help? I don't think God would hold my actions against my son, though I am convinced this issue definitely tests my reliance on the Lord over my once stronger reliance upon myself. It was so much easier going through life thinking I "somewhat" had control. I have learned in the past few months that though I have control over how my son is helped I have no control over the future. I am glad as a result of my current test of faith that I am able to call upon the Lord's name and know that he will give me a peace beyond "human" understanding and at the same time He teaches me that ultimately, He is the one in control of all things.