We had Dacotah's IEP meeting. I will say I am glad he still gets his Speech, OT, PT, and developmental therapy after he turns three. The meeting was okay but I realized everyone has their own opinion on our son and what his problem is.
I'll back up a bit. On Monday we went back to see the Developmental specialist, for those who are just now reading the blog, she was the one who did the test that found he had Klinefelter's. She was also the one who said he definitely had sensory processing disorder. She was also the one who did two different tests to confirm her suspicion of Autism mild to moderate level II. We had an in depth discussion about the progress Dacotah has been making and where he is still lacking. While we were there Dacotah threw his hands up and shook his up body as he said Nooooooooooooo, when something didn't fit back in the box the way it was suppose to. She asked if he did this normally and he does, quite a bit and more often now than he did. She said "That's part of his stimming". She asked some other questions and said she would see him back in a year, unless he starts to back track and stops talking completely.
Fast forward back to the IEP meeting. I was left feeling (I was not alone Travis said he felt the same way) that it was all in our imagination what we see at home, vs what someone saw him do or not do at school in the brief 30-60 minute glimpse into his life that they saw. I feel as though what we said and what the specialist said made no change, and we were handed a paper and told "they were not there to diagnose him medically, but educationally and on their scale he does not have autism".
I can say I was deeply heated and split. I am not trying to label our son. I am trying to find an answer.
Everyone agrees he is moderately speech delayed and talks on a level of a 1 year old 10 month. For easy math he is 10 months behind in speech. He is developmentally delayed, which everyone agrees. So from my medical background in the military, why does he have excessive speech delay despite having speech therapy on a weekly basis since April? Why did he lose the words he use to say? Yes, we made A LOT OF PROGRESS when we got him to say no that he didn't want something, or yes he did want this or that. IT MADE our lives 100x better. He sleeps... did I mention we went months without it, oh wait that was years, 2.5 years to be exact that he didn't sleep, didn't nap, and today I felt that everything I said was knocked down.
It came to the point where they said well we have to look at his behavior everywhere, not just how he does at home. Basically if he had autism he would do those things you say in all of his environments. Ummm.... Did they even hear me when I said his OT went out with us, and was not able to help that he lost it at Wal-mart???? I am glad he does amazing in preschool and that there does not seem to be any issues other than he doesn't talk in understandable sentences.
But please do not talk to me as though I have no idea what we have dealt with at home, in the car.... Oh, I was even told "my daughter bucks up when I go to buckle her in too" and several in the room laughed. I should have asked if her daughter screamed nonstop for hours on end in the car too. Does her child refuse to wear sunglasses to keep the sun out of her eyes so she's not screaming when it plays peek a boo. OH I have that on Video, in case anyone would like view our world. Have you seen him in a crowded room where he whimpers mommy while scratching his belly? Have you seen him scream at his sisters birthday party and wish he would stop screaming so you could clear your head and personally thank whoever took him outside so he could wander around and be happy.
I am so frustrated and the more I think about the events the more aggravated I am becoming. I can honestly see why parents give up fighting. They are made to feel like they have no clue, that they are stupid. I will take someone that went to Medical schools opinion over a psychologists opinion, but do NOT PLAY me as stupid and that I don't know my child. I know what HE use to do and what he does not do. Yes he is making progress, and for that I am thankful, but he is not "normal" in the sense of a normal child for his age.
I will backtrack in a blog in the next day or two the trip to Wal-Mart with the OT.
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