The Nemo Syndrome: Just Keep Swimming

Our family has had an obsession with the Nemo movie that started with our daughter Sophia. She was a fussy baby, and when she was 2, we got a car with a fancy DVD player in it. The only DVD we owned at the time (boy has that changed) was Finding Nemo. Steve would take her for a drive and watch this movie continually with her, so that I could throw up in the quiet of our home as I was in my first trimester of nausea with Zach. This may sound odd - but I am realizing this movie meant more than just some entertainment for us. A parent did everything in his power with an emphasis of going out of his comfort zone, to find his son - how profound is that in our current situation?

Zach said "baby" and "tea". Not for me - and not for his therapist either. He said it to A. his new sitter yesterday. They were looking at pictures on his computer game, and when images of a baby and a tea party came up - he said both words. I jokingly teased our therapist and asked what we were paying her for, if the babysitter does such good work. :)

Then today, Zach said "slow" and a few other words. The therapist L. called at lunchtime to let me know. She said there were other words - and that when I go home I can look at her binder to see what else he said. WHOA! Isn't that cool??? Progress and a report structure of the progress to boot. This is such a huge relief to me, I had to run down and tell Steve. I hope it made him feel the relief it made me feel.

The marathon of emails and phone calls continue. Today on our list was a call to the Central New York Disabilities Services Office (CNY DSO) to find out about what services Zach can received now that his eligibility determination has been approved. (Do not ask me what that means, I can only guess that New York state has put their stamp of approval of Zach having autism which offers him some sort of credentials when trying to access state funded services. Just a guess though.)

One piece of advice our current SLP has offered is get a Medicaid Waiver. I heard this from her a few times - but had no idea what this meant. So I called the folks at the CNY DSO to find out. The woman I should have talked to was out on vacation, again. I mean this woman takes a lot of vacations, let me tell you. Good for her. Anyhow, she left a number for her supervisor in case of emergency, otherwise for routine matters, she said to call her back March 11. I decided this felt like an emergency so I was calling her boss. This is not like me. Normally, I would shrivel under these circumstances and say, OK I'll wait. I am so glad I didn't. He was very knowledgeable, easy to understand, and helpful. He told me that I needed to get a service coordinator for Medicaid that would help me through the process. I am slowly starting to get this stuff. For whatever group you are going through (Early Intervention, school district, Medicaid) you need a service coordinator to help you traverse the path of that particular group. I am a little slow. I thought that once Zach had a diagnosis there would be one stop shopping someplace - that there would be one person to help us see all the possibilities. This is not how it works.

I have a call into one agency, and will likely call another tomorrow to find one of these service coordinators.

The other thing that I did today that surprised me: I sent a letter to a journalist at the local newspaper. It was unplanned, very spontaneous, and didn't involve spell checking or and proof reading.
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I just read your article about "Service dog helps autistic DeWitt first-grader connect at Tecumseh Elementary". I really appreciate the article since our neurologist has just recommended the possibility of a service dog for our son, age 2, who just this past fall was diagnosed with an autism spectrum disorder.

As you may be aware, autism if finding itself a lot in the media lately, which I think is great in an effort to bring about awareness. The number of those diagnosed with autism is on the rise, as you may know. (Currently 1 in 150 children - and 1 in 94 boys) Anyhow, as someone who had no experience with special needs (no one in either my family or my husband's family was special needs) we have found this new experience, or shall we say "journey", very eye-opening. I was wondering if you would be interested in possibly doing some research and a possible story on what going through this experience is like?

The reason I am writing to you, is that, after our brief stint of navigating our son's diagnosis and treatment, I have realized that there is still a lot of misconceptions about the disorder/disease. The misconceptions and issues range from what autism is, what it appears like, who is likely to get it, how to get a diagnosis, what the early signs of autism are, what treatment options are tested, what treatment options are available, and insurance coverage. There are likely many others that I have either not mentioned yet due to my stressed memory, or because we haven't hit them yet because of being so new into the diagnosis and our son's young age.

One of the most ubiquitous of the misconceptions are what autism looks like (a lot of people have said that our son doesn't appear to be autistic because he is not sitting in a corner, rocking and is a smiley, a happy, very cute kid). Another misconception is that diagnosis will be made by just going to regular doctor's appointments - indeed, my husband and I had to push for a diagnosis after getting a lot of "wait and see" type comments. This is a critical issue since it is scientifically proven that early and intense intervention can drastically alter the course of the lives of these children, from requiring services and possible institutionalization, to independent people who don't have to live off the system.

Another issue that we found troublesome was the assumption that once a child is diagnosed, there are services readily available to help. We have found this to not necessarily be the case, and are still awaiting proper services which are to start within the next month . (Please note his services will start almost 6 months after we realized he was autistic, and 4 months after we had a diagnosis which is a huge amount of developmental time in a young child's life.)

There are also some other interesting issues that are actually regarding our area - certain treatment approaches appear to be shunned (school administrators, service coordinators, therapists actually believe them to be harmful) while other approaches that are not scientifically proven are lauded. Please see the discussion on the website where your article is hosted for a bit of discussion about one such therapy. We have found this terribly difficult since we had two different doctors recommend ABA therapy for our son, yet were told that it was unavailable in our area and that it was a perceived as an ineffective and abusivemethod. Other regions of NY don't appear to have these same preconceived notions - such as Rochester, Albany, New York, or even Binghamton.

Other bizarre rumor claims autism is caused by a mother's advanced age, that it is familial or some sort of inbreeding thing (people misconstrue genetic with familial). The orignal theory of autism is that it was caused by the parents neglect,in particular "refridgerator mothers." It's interesting to note that this was an established theory that the medical community accepted for approximately 20 years.

I have also seen people jump all over parents about kids receiving the necessary services and being tax burdens on the system. I find that with the current economic climate, many find comment about waste and abuse for people receiving these services. I myself find this short sighted - many of these services are teaching the children to be independent which will likely save the taxpayers millions per just one child. (see syracuse.com blogs neighbor's west topic about special ed to see how this has manifested itself.)

If you have read this message this far - I thank you. I am sure you are really busy and receive many comments. I am sending this email under a pseudonym and request that you (if you were to determine my identity) keep my identity concealed since I fear that any information that I could provide to you could result in a negative impact on my son - which is exactly what I don't want to happen. However, knowing what we have gone through, I cannot let other parents and children with ASDs (autism spectrum disordesr) out there go without some information that could make a huge difference in their lives.

If you feel you would be intersted in doing such a story - could you email me a response? Or perhaps you could refer me to another journalist at your organization, or elsewhere, that might be interested. I certainly have more information and research to pass on, but didn't want to encumber you with any more information than I already have, if you are not interested or able.

Thanks.
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I surprised myself that I did this. Don't ask me what caused me to do this. I guess the need to "just keep swimming."