Spent some time at school today

Went to Zach's school today - crazy crazy environment.  I don't think I could handle the daycare/preschool thing for my career choice.  I am so concerned that Zach is getting all that he needs.  He definitely needs more one-on-one than what he is getting.  He needs to add in a therapist in the afternoons, evenings, and/or on weekends.  I think going to school is good for the little bugger, exposing him to ritual, expectations, and peers, however, he still needs skills and the 1:1 will give him the skills to thrive in this environment.  A call has been placed to another lawyer to discuss.

Zach is back to being in love with me.  He gives me these long kisses, and asks me to hold him and to be in my lap.  Now, mind you, he does this without words, but I know, and it is obvious to everyone around him.  Sometimes words aren't necessary for communication.  For instance, ask my therapists from our home program what Zach's favorite color is - they will tell you green.  I know that too.  Just witnessing what he is drawn to I guess.  I think it is becuase his favorite lovey (baby blanket) is green. But nonetheless, we all know it.

I can tell Zach is a kind child, he will never intentionally hurt anyone.  He appears very cognizant of this fact - purposely avoids situations where danger might be involved and I noticed that when in a shoving match with his sister, he only shoved her when she was laughing, and when she stopped, he stopped too. The few times he hurt me and I gave a loud "ouch" he immediately stopped.  He doesn't have any self injurious behavior right now, and although he likes physical sensory input, he appears to understand that if another person is involved, he needs a soft approach (he cuddles a lot).  His more aggressive cuddling seems reserved for me. 

The little bugger filled in some words while we sang tonight.  Haven't done that in awhile. (You are my "sunshine", my only sunshine, you make me happy when skies are "gray")  He also said "I'm awake." this morning after walking into my bedroom. Where is this coming from and how do we get it to continue?

A recent change in stats at the CDC now give the rate of dx for autism at closer to 1:91.  Many say that a broader diagnosis criteria and better tools to screen and diagnose are the reason for the increase.  Another point made is that several children dxed later fall off the diagnosis, some say due to treatment and some say to an improper initial diagnosis.  The interesting thing about the initial CDC studies is that they are conducted on 8 year olds. This gives ample time for those children who will likely lose their dx to do so.

The question I like to ask is - where are all the 45 year olds with autism then?  Now a recent British study indicated that their survey did show a 1:100 rate of adults age 18 and up.  However, the sample size is very, make that extremely small, hence, this is by no means left unfinished.  In fact, they only found 19 out of the initial survey of 7,461 - which works out to .25 %. or 1/4 of a percent.   They then extrapolated the numbers which is not a real survey, and statistically invalidates the study.  I don't want to bash the survey - but it is extremely limited.  If it is in fact true, it would actually make me feel a bit better - that would mean that there are a lot of people functioning in society today without dx's. 

Getting back to the original report:  1:91 would have meant that there were approximately 5 kids with autism in my graduating class from high school- that was before inclusion - so I guess I might never have seen these individuals - they were neatly tucked away either at institutions or programs that kept them out of typical public school systems.  

I am thinking about that genetic thing now - neither Steve nor I have a relative that has a diagnosis of autism.  Are there members of our family's that would likely qualify?  Knowing Steve and my social awkwardness and, at times, imbalance, would we be considered autistic?  Things don't appear to totally line up.  The numbers seem higher, and in my experience, I know way more people with a child with autism than my mother ever knew of her friends. (A childhood girlfriend's son, a high school girlfriends nephew, 5 people from work with 7 kids on the spectrum, a neighbors son and of course all the families I have met in support groups and advocacy work.)  Maybe people didn't know back then, and furthermore, didn't talk about it when we were younger.  Does it matter if rates are higher?  I suppose if they truly are increasing, we might want to find out why.  But shouldn't we just find out why these kids get this anyhow?  1:91 is a whopping number whether it is precise or not.  It's still a higher rate than childhood cancer, diabetes, AIDS combined.

I still have yet to discuss in the blog the meeting with the school district.  I get upset just thinking about it so I probably will have to wait a bit more.  I cannot throw him under the bus like they want me to.  So sad.  Will not let it happen to him.  This meeting definitely contributed to me feeling like I don't know who to trust lately.  He is a little child - how can people be so flippant about things that affect his life?  Even if you hate me - do you take it out on my kid?  That sure does seem evil.  So why is this not just an automatic to get him what he needs?  Why does it require so much turmoil?  Why is my story one of many variations on a theme?  Do people really want a label on their kids?  Do they really want all these services for the fun of it?  *sigh*

Is this Syracuse or is this everywhere?  Are there areas where we wouldn't be having the difficulty?  I am ready to move if there are...