I’m not. I absolutely despise it. I will if I’m pushed to, but I try like hell to avoid it. I’m too emotional, I get mad, I cry then I’m pissed that I’m crying and I get mad at myself. It’s just ugly. It takes me an exceptional amount of time to be able to separate my emotional self from my “business mind” self. And unfortunately I have to talk or write out my emotions. I apologize if you end up one of the people I ramble to.
I’m trying to navigate a world I’m still very new to. Special Education. With Leo things were pretty clear, our path to where we are now was up hills, down valleys, around corners and through some pretty big traffic jams, but we are right where we need to be, entering mainstream school in the fall. Max is a big ball of I don’t even know.
Socially he’s reserved at first but when he warms up its on. Outside of that he has so many things that put him on the autism spectrum. Sensory issues, lack of speech, major out busts, spins himself in circles, doesn’t sleep, balance and spatial awareness issues. But he was not diagnosed as on spectrum. I don’t understand. Are social quirks and lack of eye contact that heavily weighed in an evaluation? Are all of the other issues, including slow processing and the inability to form a sentence of even 2 intelligible words not factors? I am so lost.
Do I want to have another child with a diagnosis? If it will help both he and myself then yes. If it will help explain why he screams and won’t wear clothes, why he shakes and looks like hes being stabbed with needles when you put a tshirt- with no tag on it on his body. Why he is having night terrors that last 20-60 minutes and there is nothing to be done. Why he walks around with his hands in fists and asking him to open them throws off all of his balance. Why he can dribble a soccer ball across my back yard but can’t get into the car without running face first into the door every day.
Why even with once a week speech therapy, practicing at home and at Leos school he still can’t say “Mickey”. How I am one of the few people that understands 99% of what he says, but most people need me to translate. I’m lost. So I am asking for reports and for different evaluations. I’m asking for help because I am terrified that on March 17th, his 3rd birthday and our official first day with no services, that I am not equipped to help him grow.
I’m not borrowing worry or making things bigger than they are. He’s not just a brat, hes frustrated and I am too. But I can tell people that I am. Max can’t. So I’m having to prepare to fight, to fight and ask for full evaluations that we did not receive. To fight to ask for what I know in my heart is right for Max. And my anxiety is off the charts high and I can’t bring it down.
So ready or not here I come. After I get this emotional garbage out of my mind.
Keep fighting, Mama. You are his only advocate. He is lucky. You are a blessing – even though you feel so frustrated….. scream into a pillow. I am sorry. I have never been through what you’re going through. Praying ….. and sending love!
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Katie,
Our daughter had some of the same issues at 3: very little speech, some night terrors, liked spinning in chairs — all sensory integration issues, I think. She began getting services at 3 from a county program (we live in Yolo County). A play therapist came once a week plus she went to some occupational therapy. It really made all the difference. We were lucky in that because they were triplets the county had a nurse paying us visits all the time, so she made the referral when they aged out of those visits. Robin Bent was the name of the play therapist in Yolo County. I hope you can find someone in your county or a similar program. My daughter was mainstream by kindergarten and is now doing fine at age 14 — the early intervention was key.
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Our oldest is on spectrum. His entire process, through the same school district and regional center were totally different. He will be mainstream in the fall to start kinder.
I don’t know if Max is on spectrum, but outside of the social and the eye contact it sure seems like it. I’m so tired of people not listening to me.
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I came across this post on Facebook from a friend of a friend, so apologies for posting as a stranger, but maybe my experience will help. I had a lot of the symptoms your child has when I was your son’s age, but I was diagnosed with sensory integration disorder, not autism. To my knowledge, eye contact and social issues are not symptoms of sensory integration issues like they are with autism, but speech and balance issues are. I went to a full-time speech therapy preschool and was mainstreamed by kindergarten. I continued with physical therapy for balance/coordination for years afterward (I didn’t learn to ride a bike until I was 22!), but I was able to participate in sports and ended up doing very well in school. It definitely seems like your child needs some extra help (keep fighting!), and maybe sensory integration is something to consider further.
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What type of doctor diagnosed you with a sensory disorder. Thank you so much for your help this is huge
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