So. Now that we have an official diagnosis there are some upsides to this. Aohdan now qualifies for 'The Autism Scholarship' which entitles him to $20,000/year towards anything he needs basically. This can be therapies, special school, anything to help him really. I don't think it pays for any specialty Dr's, but it does pay for lots of other stuff. I have also applied to receive the family grant from Generation Rescue, which is the foundation started by Jenny McCarthy. The grant will help us pay for special Dr's for Aohdan. The frustrating thing is that autism is STILL considered a behavioral disorder and not a physical disorder. Even though it's been shown over and over that autistic kids almost always have major gut problems that affect their whole system.
So one of the really tough things I am struggling with is figuring out how Aohdan learns, what is his learning style? I was looking over his testing results last night, and it made me really down. His IQ scores were below the 5th percentile. Which anyone who knows him, knows that he is smart. He comes up with some really deep questions and comments at times. But everytime they have tested him he fails miserably. So then I am left feeling more kicked around, like we have somehow failed him. The Dr kept trying to get Kenny and I to go to a parenting class, and was talking about teaching him at home. Blah blah blah blah. Really buddy? So the reason I mentioned the IQ thing is because I am seriously considering sending him to a special school for the first few years to see if we can figure out how he learns best so he can learn to flourish instead of always feeling panicked. The thought of sending him to a mainstream school is absolutely terrifying. I know I have to step back and allow him to experience to 'real world' but this is a little different. He doesn't see the world like we do, in fact I don't know how he sees the world, but I want to figure that out...
When a Dr gives you a bunch of paperwork and tells you to contact your county mrdd...it is a kick in the gut. I actually felt nauseous. But as I was so kindly reminded by my friend Theresa this morning, I know those results don't give an accurate picture of Aohdan. I know he's smart, but he does not know how to show that when they do these stupid intelligence tests. Listening to the cocky bastard sitting across from me tell me that the Stanford Binet is the "Gold standard" for IQ testing. This is same man who sat across from me and told me that the Gluten-free Casein-free diet is 'folk medicine; and that parents who "think they see results are really just seeing a placebo effect." I just wanted to yank his dumb a--- across that desk and shove all the documentation in his face proving that most autistic children benefit from the diet, not all granted, but most. I felt my blood start to boil when he started knocking biomedical, but I kept my cool. What an idiot... I was actually talking to him in my head, it just didn't come out of my mouth, lol. My thoughts would have sounded something like, "Just give me the paperwork you cocky bastard. And take your prideful know-it-all-attitude and shove it where the son don't shine. I shall make you eat your words.
But is it hard, so so hard, to hear someone tell you these things. I started to feel those old feelings of being overwhelmed creeping up on me last night. It was like deja vu, back to when Ava was born. Here I was feeling like I am starting this special needs journey all over again. I am looking at my already-packed planner and trying to figure out time to sit down and fill out a gazillion online forms, visit the school and make decisions about that, make more GFCF goodies for the freezer, oh and buy him more clothes for school and supplies I'm sure. Wait, I almost forgot, I still have to study and take my state boards for nursing this month. Ahhh, someone please, Calgon, anyway, take me away. I need a beach, and sand, and wine, lots of it, lololol.
But seriously everyone, just keep praying for us. I know God is there walking us through this, but I gotta have the occasional pity party!
Love you all and thank you for reading my updates!
2 comments:
Can't help you with the beach and sand... but you know I'm up for wine and computers whenever! Love you babe!
I guess your Beach and Sand was a week to early when you came to kelley's for Vacation.. You're more then welcome to come back beore the Beac is covered with ice and snow!! Smile Vic.. Aohdan is healthy, and as you said a funny witty little boy. There are many many things you can do to help improve his future and you know that. it is just a matter of doing what has to be done to help him. Take what the doctors tell you and what you know and what you learn from others and peace it all together to come up with what works for your son. By all means get in touch with MRDD program and take advantage of everything they have to offer.
If ya need some wine I got two bottles sitting here just give me a call... Smile
Hugs
Mom T
PS.. Pity Party's were created for mothers so you can have as many as you need.its part of being a mom and having your heart ripped apart because there is no greater love then the love for your children...that love is Something no doctor in the world can test for..
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