On December 16, 2009 my son was diagnosed with Asperger Syndrome. My response was ok thanks, I was given my paperwork, a couple of web addresses, and some phone numbers and I left. I didn't cry, I didn't ask why me....
Is it because I didn't care? This 1/2 gallon of ice cream I am eating just to distract my feelings as I write this would indicate the opposite. I cared more than any group of clip board holders could know. This was my son, this is my son, this is my story about my son.
I will be calling my son "Blue Bus"or "BB" to protect his name. Blue is where my struggles began and bus is where his obsession lays now.
Blue-Bus seemed like your typical boy. He didn't talk much as a child but I was told that's the way boys are, and since the rest of our household talked so much, it was a welcomed silence. BB did make up for his lack of speaking with crying. He cried so often and he hated to sleep, or I should say he hated to sleep alone, so Blue Bus shared our bed for 5 years. Few things made BB happy as a toddler; he loved cars (not to play with but to line up) and trains. We began to notice he had a particular fixation with spinning items (fans, wheels). Around age 2 he started to do the cutest hand gestures and twist his head to the side when he was looking at fans, car wheels, faucet water, even the Build A Bear stuffing machine in the store. We loved it when he got this "excited". We took pictures of him, captured video, and encouraged our friends and family too watch. Around ages 3 and 4 the world of video game and a children's learning website offered us up many more opportunities to watch and smile at the gestures Blue Bus made.
At 4 BB started preschool. It was a 2 day a week program lasting only 2 1/2 hours a day. There were blue and orange chairs for the children to sit at. Blue Bus had to have the blue one. There was assorted colored paper, BB had to have the blue one. They practiced using scissors. He had to have the blue ones. The teachers soon intentionally stopped giving him the blue items. He would come out of class crying. I would cry too. I went to the administrator; I said "Please can you work with me, he is not trying to take them all but if there is a opportunity for a blue one please tell them to give him the blue one." I was told it best to let them work it out now with him and they proceeded to rarely give him blue. Each school day I would give him a pep talk about other colors :no dice, he wanted the blue. He was so sad, he took it personally that they deliberately weren't giving it to him and he knew it. In preschool the kids were given jobs and every 2 weeks they changed them. One day Blue Bus was told there wasn't a job for him this week (there were 10 jobs, 12 kids). Blue Bus yelled at the teacher and said for her to give him a job. BB never had behavioral problems, never yelled at me or his sister, so I was really shocked by this. Even my daughter (lets call her Cheese Doodle) was upset by the lack of jobs, and she wrote a note to the teachers (I didn't hand it in) and listed 15 jobs she could have the kids do so no child was ever jobless. I began to dread preschool days. I couldn't figure out why the teachers were working against me, why they couldn't just give him a job. It's no wonder, I thought, that BB refused to say a simple Hi (other kids in the class would hug their teacher, or tell them about their day but not BB, he couldn't have cared any less about his teachers or adults outside of our family) to anyone on the preschool faculty. I cried a lot, I cried when I saw blue, I cried when I would see him through the classroom window looking so sad. I loved this school, my daughter had gone to this school, I loved the administration. I didn't know what to do, these little things were driving our household crazy. I looked over at Blue Bus and there he was, playing video games - making hand gestures, which were also accompanied by some moaning siren-like sounds, and contorting his body. He was so happy. He only did this for things that made him happy. These things didn't make the rest of the world happy (I see flashing lights and I get a headache, he sees them and he starts "doing his thing") so why are they making him THIS happy. I think there is something wrong with my son. I put it all together. Could it be?
I typed in the words "obsessed, cars lined up, fan, and wheels spinning" into the Yahoo search. I received many hits and soon my life started to make sense for the 1st time in 5 years. After days of reading, I had diagnosed my son as being on the Autism Spectrum. Now where do I go from here? I took him to a child neurologist and he was "diagnosed as having integrated sensory disorder. I brought a dvd with me showing what BB does and I brought BB with me to the appointment. The doctor spent a record 2 minutes with BB and I and felt it unnecessary to watch the dvd. I went home and researched the sensory disorder, it didn't feel right and barely anything matched up to what my son's "problems" were. My family trusts doctor's opinions straight away so I was met with a bit of resistance to seek another opinion, but I did. I waited months and months to get an appointment. The next neurologist watched the dvd, and they were puzzled by him. The way he can move in and out of the stimulus. Ah yes, Ticks they say. "Have some testing done on his brain to rule out any problems and come back in 3 weeks". I went home and researched Ticks. This sounded more like him. My husband (lets call him Spidy) read it all too and agreed with the doctor's findings. It still didn't sit right with me though, because I had spent many months researching and connecting with the Autism Spectrum. My obsession with helping my son was starting to take a toll on our marriage and my relationship with Cheese Doodle. I agreed with my husband and the doctors. It was time to move on. We got the MRI done on BB. I went to the doctor to get the results. No brain problem, but they misplaced their notes on my son, why did he have this testing done again she says....I start my story over again with her, but I didn't have the dvd with me. All I had was my son. I said can you give me 5 min in this room, we will talk and I will give my son this plastic water globe that you have on your desk. It is filled with blue water and makes waves when you move it; it is all I need. All I ask is you observe him while you and I continue to talk. BB gestured up a storm, he hopped, he contorted, he moaned. She took it all back. "Can't be ticks if he can "take himself out of it". Mrs Spidy, have you ever heard of the Autism Spectrum...?"
The neurologist referred me back the Children's Specialized Hospital for some ADOS PDD testing. Our name was added to the waiting list to get on the waiting list. BB's preschool teachers weren't sure that he would be attending mainstream kindergarten. He lacked focus, could put his coat on, can't hop on 1 foot. I spent the remainder of the school year working with BB non stop. I worked on his tactile functions everyday, playdough, painting, pop beads, etc. The rest of the day was to work on the alphabet, reading, and numbers. By end of school year, just the major things that we were trying to figure out about BB were still there. I had complete confidence in him academically. Kindergarten was to start and we still had no diagnosis. Finally towards the end of 2009 we got in to our evaluation. After 3 sessions, where they listened, asked questions, and spent time with Blue Bus, we had our diagnosis. Spidey and I went in and we were told our son Blue Bus has Asperger's Syndrome on the Autism Spectrum. It was finally over and we could start to get him (and us) the guidance we needed. I was relieved, not sad.
Today Blue Bus loves Kindergarten. We are all in a much better place this year. The routines of daily life for BB are exactly what he needed to function better w/ his Asperger's. I would describe him these days as confident, one might say his speech is mechanical but they would also add in adorable and his speaking forces you to slow down in life and really take time to listen. He has friend's. His teachers see nothing out of ordinary about him (except when the buses are outside). He still likes blue but also likes green. He will talk to girls. He does a have hard time focusing and homework takes us 1 1/2 hours when it should take 15-20 min. I don't know what 1st grade will bring. Once kids are more aware of the different mannerisms he has I know we will have some issues to deal with there. I'm sure his gestures come out more in school, but the teachers aren't seeing it, and for this I am thankful. These days he continues to do the hand mannerisms whenever he is using his imagination, be it to color a picture, or making up a funny story. I am grateful that he does it so often in a day, because I know he only does it when he is happy, so obviously I have a very happy child.
