Friday, June 10, 2011

My Favorite Aspie

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.

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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

8 comments:

  1. Kait- I love it. I love that it was informative and personal. I love every part of it. The great part about how you've raised him is that I don't see Sam as an "Aspies kid." I see him as "Sam." And I think that's a tribute to you as a parent. He's a great kid. He'll do great things.

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  2. Hi, I just read your story. It took me back to when my aspie was little. She will be 16 next month. With lots of therapy and support from family and her teachers, she is doing extremely well. My aspie loves music, especially the Beatles. :)

    Thank you for sharing.
    Blessings,
    lindy

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  3. Beautifully written.
    You are such an amazing mother!

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  4. I came to your blog through another blog and I am so glad that I did. Almost everything you described about your son is the same thing I can say about my son. He has not been diagnosed with Asperger's but I do believe that would be his diagnoses if I had him evaluated. I don't know what is holding me back except that it would be a conformation that my child is different. Unlike your son my son Liam showed no signs of anything until 17 months of age. Within a 2 week period he went from my talkative, happy, healthy baby to a completely different child. He lost all his language skills, stopped making eye contact and responding to his name, stopped sleeping almost completely, started self harming by banging his head and biting and scratching himself and started having allergic reactions and diarrhea to almost everything he would eat. At 2 he was diagnosed with Sensory Processing disorder and started receiving therapy. He has come a long way since then but I still see very obvious differences between him and his peers. He is very verbal now but really only talks about things he is interested in. He still has a very hard time answering questions and most of what he says is just parroting things he has heard others say or things he has seen on tv. My sons obsession is pirates. He finds a way to turn everything and everyone into something to do with pirates. Most of his conversations involve pirates. He is especially obsessed with Pirates of the Caribbean and prefers to be dressed in his Jack Sparrow costume all the time. He has a hard time holding a conversation with anyone but can recite the entire script from a movie after only seeing it once or twice. He is very easily overwhelmed in public situations and often goes off by himself. He loves to swing and could do that all day if I let him and he constantly hums to himself. Just like your son my son has no sense of personal boundaries. He is constantly touching others inappropriately. His big thing is touching peoples stomachs. He also loves to touch the faces of people with facial hair and he has a very bad habit of smelling people. It can be quite embarrassing. I try to explain his issues and most people are very tolerant but sometimes people can be very intolerant and down right mean. So few people understand how hard it is to on a day to day basis to deal with a child who has issues like this. It can be very lonely. I want to be able to take my child places and interact with others but that just isn't always possible...especially on Liam's "bad days". Just like you said the slightest difference in the routine or the routine he thought he would have and he will be set off. I also have the issue where a repetitive noise or phrase said by someone can totally agitate him. His sibling are really bad about purposely doing this to irritate him. My extended family members have a really hard time understanding his "issues" and I constantly hear that he is just a spoiled brat and I shouldn't indulge him and the behaviors will stop. I only wish that were true and that would solve everything but that just isn't the case. Thank you so much for your post because it has given me some great information and helped me know that I am not alone. THANK YOU! THANK YOU! THANK YOU!!

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  5. Melissa,
    Thank you for coming and reading our story!

    I wasn't sure if I should post it because it is a sensitive issue in our family. He's so "neurotypical" the majority of the time now that we struggle with the decision to have him re-evaluated. People say that therapists are so quick to diagnose, that "everyone wants to label everyone", but I think in the end for Sam it will help him knowing there is a reason he isn't the same as everyone else. That is my only reason. I understand what you mean that you want to avoid having a diagnoses but you just have to remember it doesn't change who he is, it doesn't change you as a parent, it doesn't change your relationship. He is the same little guy with the same little quirks. If anything this can be a huge help to you! Now you will be able to focus on specific information. Sam's biological Dad has Asperger's Syndrome and so I did have the advantage (if you could call it that) of knowing there was a chance he would have it can be hereditary.
    We've never broached the subject of being different with Sam, I'm waiting for him to be older and to ask. For now he's is just SO oblivious to the things he does and does not understand at all why someone would not be comfortable being sniffed, totally something he does too!
    Sam also has issues with diarrhea and throwing up. When he was younger (6 -18 months) he would frequently make himself throw up when we would go grocery shopping, now it is random... he'll just throw up. *shrug* It's odd to me that he doesn't get upset when this happens and a lot of the time he doesn't even tell me (yuk!) I just find it.

    There were three reasons that we were given the diagnosis of PDDNOS (pervasive developmental disorder not otherwise specified) and not just diagnosed with Asperger's Syndrome. #1 He was too young. They say that after age 5 you can see "signs" more as AS progresses as they get older, #2 He had delayed speech and did not have an extensive vocabulary until he was older. We attribute this to his hearing issues when he was younger which caused a delay. The final reason that he was not diagnosed is because he does not and has not ever had any issues making eye contact. That was the biggest one. He is SO overly friendly and is very very social... but like you said inappropriately so.

    I am so happy that I could encourage you through my post.
    Good luck on your pirate adventures!

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  6. You will probably never know how much you have encouraged me and helped me to feel I am not alone in this. I love my son just the way he is and he doesn't realize he is different or the things he does and says are weird to others. It is just hard that others aren't always as accepting. Thank you again for your words and your explanations. You have put peace in my heart and given me so much hope for my son. It will be so wonderful being able to regular read about another family that is going through the same thing that my family is going through. Especially since our sons are s close in age.

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  7. WOW. What a well written post!! You little Sam sounds so much like my little brother. My brother is now 16 and was only diagnosed at 14, but we always knew there was something different about him. He still has hard days, but as he's gotten older and as he's received more counseling and therapy, things have been easier for him. I really appreciate your honesty in this post!

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