Posts Tagged ‘High Functioning Autism’
I am writing this post in a way to vent out some feelings that I have. I am not saying that things people are doing are unfair. I am saying that I think there is not equality in the Autism world.
You know I think back to when Dakota was a baby. He was such a happy little baby. His first word was mama. Once thing he loved was being in the swing. He could swing for hours upon hours. When he was little he would sit and rock himself in a corner. He would just bang is head out of the blue. I called the pediatrician. They said to bring him in to check his ears. Well no ear infections.
He use to say wiggle wiggle, tickle tickle and mama. At 10 1/2 months Dakota lost those words. He didn’t talk again till after 3. His eye contact was never that good. He has improved with eye contact a little. He doesn’t like crowds. He doesn’t like it when a bunch of family members are here either. He would much rather be in his room. Never really liked cuddles from anyone.
Let me rewind a little bit as at 4 months we were on our way to visit a friend in Nebraska and one in Iowa and once we got to Nebraska he started having these strange blinking episodes. The next day we saw a pediatrician in Nebraska who told us those were little seizures. We saw these episodes a few times on other road trips. That’s when Dakota’s seizures started.
They did many blood tests and work ups. Hearing tests which turned out fine. They were checking for rare seizure disorders and fragile X. None of which he had. They did an MRI on him at roughly 12 months. I will never forget the day I got the phone call. Telling me that they had to look further because his MRI had abnormal gray matter. They at first thought it was a brain degenerative disease. I hung up the phone and screamed and cried. My husband was at work. My friends and family were 2 hours away. I didn’t really have anyone around.
I had called birth to three in and I got the oh well everybody has a little autism in him. I went round and round with pediatricians telling them I suspected autism. Finally one listed and we were refereed to a developmental doctor.
We saw a wonderful developmental doctor in Madison. She was in awe at how careful Dakota was with the little dollies. He didn’t make eye contact with her of course and he didn’t talk to her. In fact I think he even shut down while he was there. We went through a couple evaluations. She ended up diagnosing him PDD-NOS. She recommended that we get into a program that offers intensive autism therapy.
We started out the evaluations for the intensive autism therapy. Once he was evaluated he was given the diagnosis of Autism. We started out with ABA therapy. It was very repetitive what they were working with him on. They even had him in his room with the door shut. One thing I noticed that this program was not for him. Every team meeting he would cry. He hated repetition. So we went to a company that had more play therapy. That seemed to work.
We did intensive therapy for almost 3 years. He didn’t like them coming to school. So we went to post intensive. Which went from 35 hours a week to 8 hours a week. We are doing that now with him. We went through a really rough patch with schools not once but twice and we are now homeschooling again. I have seen great improvements in him. He is more social and he takes in a lot more school work then he did when he was in school. He is progressing nicely.
Right now he is currently diagnosed with High Functioning Autism.
Things I remember from him being smaller. He use to hate being dirty. I remember he would freak out. Now he doesn’t care if he is dirty. Which really drives me nuts. He doesn’t care if his pants are ripped as he thinks he is making a new fashion statement. He can be really sensitive and he still melts down from time to time. He also needed a lot of sensory input. He was both low and high on the sensory scale. He hates clothes. Will run around his shorts. He doesn’t like shoes or socks either. He only eats certain foods. Doesn’t really like meat. Lot of it I think has to do with textures. He is noise sensitive. He doesn’t liked to be touched by others. He is anxious depending on where he is. A little ball of anxiety yet at times. I am probably forgetting something here but that’s all I can think of for now.
I think the hardest part for me was that I didn’t feel I had the support. Sometimes I felt like my parents didn’t understand. Sometimes I do still feel that way. Not often anymore. When we started this journey we were alone. We didn’t know people with autism or kids with autism. Now I run into all kinds of families, both in real life and the blog world. It’s nice to also have friends and neighbors that don’t judge him. That understand that he is different and still treat him like any other kid. I have some amazing friends.
I think many of the feelings I had were anger, wondering if it was something I did, or how I just wanted to fix it. Now since we have been through it awhile I wouldn’t change it for the world. He is one amazing kid. He loves building with wood. He is really good with abstract art he just doesn’t know it yet. My mother in law pointed that out to me the last time she was here. She said she would love to spend some time painting with him. In case you didn’t know my mother in law is an artist. My mom is really artsy too. I don’t think my mom has done paintings but she has done some really incredible drawings. So Dakota doesn’t get it from me. The best I can to do is a stick person with some stick clothes. LOL
I guess what I am saying is there is more awareness then before and there is more support out there then you know it. All you have to do is look for it. Remember one thing you are not alone. You are the best advocate for your child so don’t be afraid to speak out.
I like to read the new break through on Autism however sometimes I gotta wonder where they get the funding for this and how much of it is true. I have seen things from many angels and wonder what’s next all the time. This article was interesting though as it made me think back to a couple years after my son was first diagnosed. I was talking to a friend in Texas. We were talking about how Dakota’s MRI’s showed it to be abnormal because of grey matter that should be white. I remember a couple neurologists at the time one from Texas and the one we were seeing in Madison University Hospital tell me it was common for kids with autism to have abnormal gray matter. It did later fill to white according to the MRI’s. I will never forget the day I got the call though about the MRI. I was home alone and my parents still lived in Milwaukee. Nothing like a phone call telling you they have to do more testing to find out if it’s a brain degenerative disease or not. Thankfully it wasn’t. I suppose I am getting off topic here.
My son Dakota has High Functioning Autism. Most of you who follow me already know that. This year I decided to homeschool my son considering how stressed he was at school. Yes the school did try to be creative and they really did try to accomodate him. However it just wasn’t enough to rid the stress and anxiety of being at school.
I sit here thinking about Dakota. Dakota was diagnosed with High Functioning Autism in 2007 although a few of us question whether or not he has Aspergers. I am a little confused as back in 1994 Aspergers was referred to as High Functioning Autism and a lot of symptoms that Dakota does display do fall into Aspergers. When we go for the work up in Madison I will find out exactly where he is on the spectrum. Not that it really matters to me as with or with out the label Dakota is my sweet loving, complicated boy.