Minnesota Autism Mom

I went to the Holland Center on Sat afternoon and I think I benefited most from speaking to the “owner” and some other parents. Once again, I am sadden to hear another devasting story of a child going to Kindergarten for it to be a horrible out come.

I also learned that the Holland Center takes kids ages 3-13. This has sparked my interest because I am not sure when my son will be done with ABA, but after meeting with HC and Autism Matters; I realized that age is not the reason to stop ABA services.

They brought this up during the discussion, as did the parents I talked to as well. The owner explained that we graduate kids at 7 because the state of MN wants services to be done with by that time (ok, because ABA is frickin expensive). And very sadly, the state views it like this – if the child cannot learn all he/she can learn by 7, then they probably won’t learn it anyway. (my heart sinks…is this valid?)

I wanted to see what other info I could find on this topic. I am copying it below…

From – http://rsaffran.tripod.com/faq.html

Is ABA appropriate for older children?

There is a popular misconception that ABA is useful or appropriate only for young children (under age 5). This notion probably comes from the remarkable successes of the UCLA Young Autism Project, in which many young children achieved normal functioning. While it may be true that the greatest benefit results from starting very young, this is of no importance when you are considering your child’s future: however old he may be, you need to be sure you are giving him the best possible future.

The teaching principles of ABA apply to all people at all ages. It is a science of human behavior. It guides us in how best to achieve goals of skill development or independence regardless of age or disability or ability. Within the limits of your child’s potential, intervention based on ABA principles will help him learn as much as he is able. Even if full recovery (normal functioning) may not be an option due to the severity of his disability or, perhaps, his age, there is no teaching method shown to have the same ability to develop his full potential.

A real tragedy is being played out again and again: young children are denied ABA services for years; then the parents advocate for a program, and are told, “Sorry, we won’t pay for that because your child is too old to benefit.”

From  http://autism.lovetoknow.com/ABA_for_Older_Autistic_Children

Availability of ABA for Older Autistic Children

While an impressive body of research supports the benefits of ABA when applied during the early years, comparatively little evidence is published about its effects on older children. However, anecdotal accounts from parents, caregivers, and autism professionals are many in regards to gains in social skills, learning ability, and behavior in older children.

However, anecdotal evidence is not enough for many health insurers, making it difficult for many parents to find coverage that will provide ABA for older autistic children. While some states mandate coverage of behavioral therapy for children with autism up to the ages of 18 or 21, many others cover ABA for only the younger ones, often only until the age of five.

Autism advocates are lobbying to change that lack of coverage. In Virginia, for instance, a state where most insurance companies do not cover ABA at all, legislation has been proposed to make such coverage mandatory. The proposal being discussed would require that health insurers provide autism treatment, including ABA, to any child up to age 21, with a maximum coverage amount set at $36,000 annually. Similar legislation has already been put into place in seven other states, and the autism community is applying pressure on many more state governments to follow suit. These measures would greatly reduce the financial burden on families of autistic children, many of whom pay thousands a year for ABA, and bring ABA therapy within the grasp of those without the resources to pay out of pocket.

This has weighed heavily on my mind lately. Never a clear answer. Constantly trying to think about what does MY son need and what exists. Even if you know your options (ABA/RDI/public preschool/private/daycare/etc)…then it’s a matter of openings. In the past week, I have had 2 places call with openings. I was on the waiting list since last April (so basically a year). The place my son goes is only half day and they had openings after 6 months.

Today I ran into this about.com article. Which might be a good place to start if you are in a similar situation. Once you know the options, then it becomes impossible to try to figure out what you pursue. But, if you are like me, you will just get on as many waiting lists as possible and more or less take the first one that calls.

Apart of the reason I started this blog, was to find others that are utilizing these PreK options so we can discuss our likes and dislikes of the programs. I only think we can make intelligent choices if we talk, rather than always talking to the provider.

Another conversation I have had lately with friends with children entering Kindergarten is the similar transition to K. Again, about.com has written up a great article to possibly help w/ this transition as well.

I also found these links doing a quick Google search.

http://www.education.com/reference/article/Ref_Living_Autism_Moving/

http://www.iidc.indiana.edu/irca/education/Kindergarten.html

http://en.allexperts.com/q/Autism-1010/Transitioning-Kindergarten.htm

http://www.questia.com/googleScholar.qst;jsessionid=Ln6hwn7RR26P3Y3Vh12QY8rLjTnRVrS7Fz8Vmp85zjp2GyLz2mYX!2144018255!1093128662?docId=5002101290

http://www.brighthub.com/education/special/articles/22295.aspx

http://www.post-gazette.com/pg/07234/811045-114.stm

I just finished reading “Autism’s False Prophets” and I would highly recommend reading it, even if you didn’t have a child w/ ASD. I believe everyone is bias and he clearly is a dr that sees his pt of view and is arguing it strongly and clearly.

Prior to having my son, I was told to consider spacing out vaccinations by co-workers (who happen to be teachers). Everyone said that they think vaccs are important, but also scary and shouldn’t be done all at once. The ASD scare was clear to me. I did the same. I did no research on the topic and was then was scared too by the amount of inoculations they wanted to put in my baby boy. I spaced them out. Did them when I wanted to and my son has autism today. I have no way to prove this, but I do not believe shots caused ASD in my child. I think he had a rough start and continues to be delayed today. Shots or no shots, I think my son would be the same.

So the first time I walked into the Autism Shop in Hopkins (the day after he was diagnosed), I was surprised and taken back by the woman in the store.  Her first question…”do you believe he has asd from shots?” Ummm…no, he didn’t have a traditional imm. schedule and blah, blah…Anyway, she dropped it. She moved on the GCFC diet.  She explained it wasn’t that hard to do and her daughter now goes to college..is cured or whatever. I was a little annoyed with her. I told her we just got the dx and were there to shop. She really wanted to discuss this and I felt overwhelmed by her need to educate me on the spot. She did this again the 2nd time Iwent in a few months later. I could not order certain products online, so I went to her store again. Same old crap and I couldn’t believe she was dying to bring this up again. I am not sure I will ever make a pt to go there again.

It seems like everyone is fearful of the all might shot these days. I see in newsletters put out by TACA, recommending to not give the flu shot or any other shot if your child has a dx of ASD. This makes being a parent very confusing. Is there weight to the argument that vaccinations cause ASD? Is it the mercury/thermisoal? I was tired of wondering and have started to read more deeply this week. Read online, read various books and after some serious thought, the most believable conclusion is of Dr Offit’s book. There is no proof mercury causes ASD. None. And Dr Wakefield’s conclusion that MMR/bowel issues are related to ASD has been all over the news lately…again and again disproving his theories. He was too quick to have found a cure and I see the media pointing this out today, but clearly the damage is done. How many people are not vaccinating today because of him? It’s going to take a long time to counter what has happened since the 90’s.

Anyway, I am going to try to conclude now (as I would rather be napping!!). I am not a huge fan of biomedical approaches. I am concerned about the desire to do anything and everything for a child. I worry about the emotional issues of proving you are a good parent by doing everything. I really liked Dr Offit’s comparison to polio. As he reflects on the desperate measures (and sometimes fatal) to cure a child of polio…we can easily see how history is repeating itself. It happens in all medical disorders that are not currently curable. Do you remember the cure for MS using bees?

I am skeptical of the GCFC diet, I think chelation is a horrible idea, and I most definitely do not think people should be scared of big “pharm”, but always cautious of well-intended, but uninformed individuals. In fact, that is a good way to wrap this up. There are A LOT of well-intended, but uneducated people. I am going to be extremely skeptical of the ASD cure until there is some serious evidence over a period of time. I am not going to let my baby be someone’s guinea pig. My new research topic…allergies/ASD/ and the GCFC diet. Where did all of this come from? Any recommendations on where to start?

Science Friday’s