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Begin at the beginning.

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So how did we get to where we are today? I want to go back to the beginning of this journey and start from there, filling in additional information where it makes the most sense. I started blogging in November 2004 which was 11 months after we began the process of trying to figure out what was happening with Simon.

Simon's diagnosis was slow in coming. In the span of a lifetime it was quick, but in the life of a two-year-old it seemed to take forever. Our initial concerns began just before Simon's two-year check up. He wasn't matching up to the "standards" set in books and online parenting resources - as a new parent, the standards are often all you have to go by. At that time Simon said just a few recognizable words and was not stringing any of them together. We also noticed that he had a tendency to gain and then lose words. He would learn a new one, use it all the time, and then it would disappear from his vocabualry.

We talked with his pediatrician who suggested we get in touch with an early intervention program in our county called EC Cares. They would make an initial assessment and we would go from there. The phrase "many boys just talk later" ran through my mind and supporting friends echoed that sentiment. Chris and I were feeling concerned, but the idea of autism was still very far from our minds.

Once you start the process of early intervention, even simply for speech delay, it can take quite awhile. Phone calls, questionnaires, home visits, evaluations, etc. - you feel like you are answering the same questions over and over. And yet, it is all about getting him on the right track. It is all about early intervention. I can not stress this enough. If you have questions or concerns, check with your pediatrician. If they dismiss you, or downplay your concerns and you still feel strongly that something is going on with your child - get a second opinion, contact early intervention yourself, keep pushing until you get your child what they need.

By the end of 2004, as Simon was approaching his third birthday he was only saying a couple of two-word phrases. Earlier that summer, after beginning to receive early intervention services for speech delays, we began to question whether something else was happening with him. He was exhibiting other "interesting" behaviors such a lining things up over and over again in a very methodical manner, saying his ABC's and counting to 20 but not having a verbalization for "yes" - these were a couple of the things that made us question what was happening with him. (For more information see: What Should I Do If I Think My Child Has Autism or Autism Resources or ASA Diagnosis & Consultation)

Around this same time, Chris' Mom saw a program on TV about autism and mentioned it to Chris. We both thought "naw," but in reality we knew very little about it. We started reading about it online, obsessing over it, questioning everything, feeling afraid, wondering. We pushed to have him evaluated locally - he was put on the waiting list at the Child Development Research Center and our 6-month wait began. We could have gotten a quicker evaluation, but we wanted something that was more comprehensive: at CDRC Simon met with a developmental pediatrician, an OT, a PT, a social worker, a child psychologist, a speech pathologist, and an audiologist who collectively came to his medical diagnosis (here is a post from that time period - for more, go to the archives and read January 2005).

A diagnosis of autism is not simple. For Simon it was "probable" autism. What does that mean? One thing it means is that he was unwilling to complete some of the tests (he was three at the time - sound familiar), but it also means that the professionals saw things in him that were alarms - things that pointed to autism. Also, around here (and elsewhere I assume) you need the daignosis to receive services. In addition to his medical diagnosis he was also evaluated by the Early Intervention/Early Childhood Special Education autism teams to be able to receive certain services within the school district.

Being the parent of an only child with something not quite right with them is interesting. You have nothing to compare their behavior to; nothing besides kids at the playground, in the playgroup, or what other parents say online or over the phone. In some ways I have seen this as a blessing - Simon is Simon. We know no different. When we see him out amongst other children is when we really see a difference in his behaviors.

This morning I went on Amazon to gather together a list of books I have read since Simon's diagnosis. There are so many more available now, just one year later.

I remember Chris and I walking out of CDRC (where Simon received his medical diagnosis) and knowing that the next stop would be the book store. We are book people. Books seem safe and comforting; the whole knowledge is power idea.

These books are not easy reads. Some are considered controversial.

The first book I read cover to cover in just three days was:   Unraveling the Mystery of Autism and Pervasive Developmental Disorder : A Mother's Story of Research & Recovery. After reading this book we immediately began the gluten free/casein free (GFCF) diet. Milk was removed three days after his diagnosis. Gluten, which is much more difficult to remove, took us months and months to get to the point where we felt like it was completely removed. It is a daily battle.

Others of interest:

Facing Autism

Special Diets for Special Kids (if you are doing the diet this is a must have)

Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder

Evidence of Harm : Mercury in Vaccines and the Autism Epidemic: A Medical Controversy

And a couple novels:

Daniel Isn't Talking : A Novel - Ordering this one today. Looks interesting.

The Curious Incident of the Dog in the Night-Time

That was really the beginning for us. Looking back it is blurry. I am glad I have this blog as a record of many of my feelings during that time - I can see myself then, remember better how I was really handling (or not) what was happening.

And through it all, the most important thing has been Simon. That he is super wonderful Simon.

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