Aspie: a loving term for one afflicted with Asperger's Syndrome, a disorder on the autism spectrum. The disorder causes social and often motor impairments but those who have it are often very intelligent and have particularly strong interests.
Asperger syndrome or Asperger's syndrome or Asperger disorder is an autism spectrum disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported - Wikipedia
I don't remember the beginning of our road to Asperger's Syndrome. It was a life time ago to me. Those first few months with Sam can not even be described as hell. It was worse than that. I think it started the second he was born, at 35 weeks and refused to open his eyes. Maybe it was the constant screaming, the fact that he would only eat if no one touched him (from day 1), our frequent trips to the pediatrician every other week for a year; he was always sick. He has mild asthma and every time there was any sort of a hint of sickness he got it worse than anyone. RSV almost killed him twice. My Dad sat up with him for two days straight (this is saying a LOT about my Dad who like me, NEEDS sleep) patting Sam's back, cleaning his nose with the bulb syringe and giving him treatments from the nebulizer. I think it would be easier for me to count the days I did get sleep rather than the days I didn't because he just never.slept. All he did was scream. Not crying mind you... screaming... and no, there was nothing wrong.
It did get better when he started getting mobile... which wasn't until 13 months. Even after he learned to walk though he was so danged tipsy. I remember when he learned to crawl though and all he wanted to do was be with my Dad. He would crawl up and down their hallway making a popping noise with his mouth and we thought it was just so cute until we found out it was because he had 75% hearing loss. We were referred to an ear nose and throat specialist and he had tubes put in. His first word was "grovard" and he was only 6 months old when he said it. He knew exactly what he was talking about too, it was a Grover (from sesame street) stuffed animal I found at Borders for him. He loved it from the second he saw it.
Our pediatrician (who I love and miss desperately) seemed to take a specific interest in me and my son. He was our family practitioner and knew all about me from my mom and then when I got pregnant (at 17 no less) he became my OBGYN as well. He was the one who suggested I see someone, she would come to my house and watch Sam play, he said. This was in response to me telling him that Sam seemed to spend an awful lot of time banging his head against the wall. I clearly remember me joking that I wanted to join him. Dr. M was not a funny guy and never got my humor. So when I tried to back track that it's not like he did it all the time just when he was bored; I really didn't want some social worker come snooping around my creepy apartment building.
But the woman came and seemed impressed with my mothering skills. I'll tell you what, at 19 I did not think I was a good mother. I felt as though I was hardly surviving. It's no joke, Sam survived the first two years off of gold fish crackers. He wasn't a picky kid, in fact he's always been a pretty good eater. The problem was with his ability to sit at the table. Looking back now I think he had some sort of table anxiety. He turned into a freaky wild man throwing his body, his food... everywhere. It wasn't an attitude; there was panic in his eyes when I'd strap him into his highchair. I had to buckle him in though or else he'd just flop his body out onto the kitchen floor.
It was May when she suggested enrolling him in a birth to 3 program and I told her I was moving to Spokane that summer. I was going to live with my sister. The woman was ecstatic and helped me fill out my first stack of paper work (boy when you have a "special needs" kid you fill out a LOT of paperwork) to enroll in the Spokane Guild School. We moved June 1st and Sam started "school" at 17 months old.
His first evaluation was so hard to witness, he ended up curled up in a little ball rocking back and forth under the slide and looking like a cornered animal. I told them he didn't like swings but day after day they made him get on that stupid swing with one of his therapists wrapping their arms and legs around him. I cried, his therapist hugged me. This was a routine of ours for about a month until he could get a seat on their little bus and I didn't need to bring him in for therapy... didn't have to witness the horror. He went to the guild school 3 days a week for the next 2 years. I really think Early Intervention saved him. We knew for a very long time that his official diagnoses would eventually be Asperger's Syndrome but for now, him not being 5 years old, they had put his diagnoses as "PDDNOS" or Pervasive Developmental Disorder Not Otherwise Specified. We got in, in a few weeks to see the Neurologist to get his official diagnoses changed to Asperger's Syndrome. I feel like it's a big step.
Now at 6 years old he is so different. He has his difficulties; when his schedule is changed, when he's made a plan in his mind and he can't stick to it, when he's just out of his element... he quickly pales. There are times (more frequent these days) where something has happened that gives him an off day. Maybe he didn't sleep well, maybe he wanted the blue bowl during breakfast but he just has a hard time coping. He thinks that if he explains to me that He was playing with all of the lego men with a plain face and Joe took one that I should tell Joe to bugger off. But I can't. He's great at sharing, but he gets in these very restrictive mind sets and then shuts down if he's disturbed.
A few months after Sam turned 3 he had his first real melt down. I think I told my husband through tears that it was just SO Autistic! I believe I held him down for 10 or 15 minutes of him screaming and thrashing around. I wont lie, it scared me. My completely calm kid had lost it. He has had exactly 3 huge meltdowns ever. It's not something a spanking or a time out can help. Sending him into his bedroom until he's done screaming doesn't help. I honestly don't know what helped but just waiting until it's over. Then he slept and slept and then the next day he was better.
Our pediatrician who is the head of the Children's Mental health board in Spokane and also was Sam's pediatrician all through his time a the guild school suggested we get him into some sort of electronics. He explained to us that Sam needs to zone out. I always knew this to be true in the back of my mind. When he was smaller the only time he stopped screaming was to watch Elmo in Grouchland.
He still spends a lot of time playing his DS, zoning out. I don't like it much but that's how we deal. He can get extremely agitated when something happens on one of his games, like if Joe plays his game or if it's gotten deleted. He can't let it go for days. He can get quite irritated with the kids too, sitting to close to him, making the same noises over and over (which Molly does ALL the time!). Something *I* deal with is knowing when this is typical 6 year old behavior. If it's something that is truly making him feel "ill" or like "I'm going to explode" then obviously I want to help him, while at the same time i don't want to give him excuses to be bratty. And sometimes he is. He's six years old. He still needs discipline. I always think Jerry is too hard on him, he always thinks I'm too soft. Ha. It is true, I let him get away with murder.
Another coping technique I've been offered is to give Sam 8oz of coffee in the morning. We've also used a pressure vest but last year was able to put it away and be done with it.
Obsessions are something that Aspies struggle with. He is obsessed with Pokemon. he collects cards, he watches the television show, the movies and plays pokemonheartsilvergold (He says it real fast with no spaces between the words). He will walk up to me at random times (like two hours after he's gone to bed) and say something completely random about pokemon. "I need to get my so and so up to level 50." then he'll walk away. It was just on his mind and he just had to tell me. He's a quirky guy.
I know a lot (maybe even ALL) of my friends and family can attest to this: the child has no physical boundaries. One of my friends dang near every time she came over Sam would touch her boobs. This was two or three years ago and we worked on it a lot "you can not touch people... there." It was so embarrassing. He also likes to touch peoples faces with his face, still. Mostly this happens to my family. I think we've drilled it into him he should not touch people... but he still does. He's so loving and very touchy - touchy. I am not so this is particularly something hard to deal with. I find myself wanting to tell him 'buddy, I love you but if you touches me one more time...!' lol. If he is sitting next to you he wants to rub your arm, lean on you, sit on your lap... none of the other kids act like this at all.
There are things he will never forget (Calling my Dad pumpkin apple pumpkin apple) and things he will never remember (DO NOT LICK YOUR HANDS AT THE TABLE *shudder*). Sam makes rules for himself to follow and he sticks to them.
I love every one of his quirks, he makes me laugh every.single.day. He surprises me with amazing facts. He wants to be a scientist or be a cattle farmer, as if the two are in any way comparable. He is the funniest most intelligent and surprising child I know.
I originally started writing this in April, for Autism Awareness month... but it wasn't done in time. I don't feel like it's done now, maybe it's because trying to fit my kid into a blog post; it is impossible. Every feeling I have triggers another emotion or memory, I feel like I'm just skimming the surface as everything has a deeper meaning or a deeper emotion. Those are things that can't and wont ever fit in a blog post, maybe that's why this is the first time I've written this.
It is said that everyone has a little bit of autism in them. Some people, just have a bigger dose.
If you're interested in finding out more about Asperger's Syndrome here is a list of a few of my favorite books:
The Complete Guide to Asperger's Syndrom by Tony Attwood
Asperger's Syndrome: A guide for Parents and Professionals by Tony Attwood
Can I tell you about Asperger's Syndrome? A guide for family and friends by Jude Welton
Look me in the eye: My life with Asperger's by John Elder Robinson
All Cats have Asperger's Syndrome