7.29.2008

What is this all about?

June 2, 2008: Our son was diagnosed with Autism We have always known that there was something a bit different about him - it just never really manifested itself in a way that was a hindrance to his everyday life. He was a super happy baby, though he never had an attachment to any person ,blanket, or stuffed lovie. He could play by himself for hours. Each time we would read in a baby book that he should 'now be capable of playing on his own for 15 minutes', we would look at each other and chuckle, knowing that our son could sit for an hour straight turning pages in a book and pretending to read. He babbled on time, crawled on time, started to walk on time. I wasn't exactly sure why I suspected anything, now that I look back. He didn't ever like to eat; I guess that was one thing. From that very first spoonful of avocado when he was 6 months old, he has NEVER liked to eat. The same month that his baby sister was born, he turned 18 months old. He learned to count to 10, learned all his colors and shapes. Then began naming his letters and memorizing books. He cautiously colored with crayons and pens, beginning to draw shapes and then letters, and then went on to write letters and words. The funny thing was - that while he excelled in his cognitive skills and learned each new thing in one or two sittings - he was unable to use the large vocabulary he possessed in order to communicate to us his most simple needs. More drink, I'm hungry, Hold me, Its Hot, Help..... Its not that an 18 month old should be fluent in any language, but most of the time they can communicate in some way their basic needs. We had worked on sign language since he was about 9 months old. He picked up fairly quickly - yet 'more', and 'all done' never held any meaning to him. He just repeated everything we would say back to us. There were many nights at dinner that dad and I would look at each other wondering if there was something wrong with him not communicating. Not being able to tell us that he was still hungry, full, or just wanted something different he would spit his food back out and yell. Dad would say to me 'I wonder if all kids go through this' and then I would assure him that it was a phase that every kid just gets past. Not once did he ever bring something to us so that we could help him to open it or fix it for him. Not once did he ever tell us he was hungry or thirsty. Not once did he ever point to something way up high that he wanted oh so badly. Instead we would get a lot of grunting and hear whining in the other room where we'd find him frustrated that he couldn't get the top off the container of crayons. The ball dropped in May. I had an overwhelming sense that there was a problem with the disconnect between his intelligence and his communication. I saw him reacting in new ways when he was in social situations or outside the safety net of our home - he would stare off in a daze, he would be paralyzed by the music and act as if there was no-one else or nothing else going on, he would babble in a very interesting tone when encountering another child, he would draw on all the surfaces of the room with his finger, and on particularly upsetting days he would dart his eyes around the room jerking his head up, down, and to the side. Then we went out of town to visit some friends for 5 nights. He absolutely loved the little girls that we were staying with. Being about the same age, they all played together very nicely. One afternoon I looked over and saw Dad with tears in his eyes and I asked him what in the world was wrong. Looking at one of the precious little girls pushing a toy car down the hallway and back had brought a deep emotion to the surface. 'He doesn't do that, Why doesn't he do that? Little boys are supposed to want to push cars and make noises' During our stay, each nap time, each bedtime, and each new day in a new house with new people kept building up and building up for him. By the end of our stay, he was a different little boy. You could see the frustration welling up inside of him. One afternoon, we were sitting on the couch, not doing anything at all. I think he wanted to get down, but instead of finding a way to communicate that to me - when one of the girls got too close - he reached out and bit my shoulder so hard I bruised purple and black for days. At that point, we decided that we would seek an evaluation. In the back of my mind I had always considered Autism, but I always told myself 'No, he's so happy, he laughs all the time, he makes such good eye contact'. Evidently all that doesn't matter. Autism is a huge puzzle. Each person on the spectrum is affected very differently. Once you get that diagnosis, you basically have to throw EVERYTHING you've EVER heard about autism out the window and start fresh. I don't claim to know much about Autism, I am just here trying to be the voice my son needs. His is not and will never be 'just a label', he is not Autism, he is Autistic...and extremely High Functioning at that. There are days that I doubt the diagnosis because he is so typical. Then there are the days that I just want to hold his precious face and rock him because he seems not to understand why the world around him frustrates him so bad. For the most part, he is just your average little boy. He loves to play... he loves to dance with Mommy... he loves to horse around with Daddy... he loves music and TV and chocolate. He loves to sing and hug and kiss. He LOVES going 'bye-bye car' and going to church. He loves his Sissy, shares with her well, loves visits from family and friends. He talks and plays constantly and just loves life. There are those few things about him that are Autistic; lining up toys and other objects, echolalia, non-functional speech, scripting, extreme interest in cognitive skills, and disordered social interactions. Above all... he's just my little boy. Nothing has or will ever change about that. I will be using this blog to keep a record of his achievements in therapy, his new goals, his new interests, and his daily hillarious happenings. Follow along our journey if you will.

1 comment:

LJ'smum said...

Hi. I read a few of your later posts and im now going back to the beginning :) I found it through Laura's blog (whos blog ive also just started reading)