While trying to come up with a topic for today's blog, I decided to ask the Facebook world for their opinion. What questions did they want answered about Sean or his condition?
I decided it would actually be better if I answered over two nights in two different ways; tonight you will hear my answers, and tomorrow, if I can upload the video properly, you will head answers from Sean himself. We will do my part tonight since Sean is already in bed. LOL!
What were some of the first signs you noticed that made you realize something wasn't right, and what age was he?
I think we noticed signs a long time before we actually sought help, but we never imagined there was anything seriously wrong.
Sean was always a challenge, but when he was born it was more the physical health issues that consumed us. He was fussy almost as soon as we brought him home. He had reflux and colic. He didn't sleep. At 4 months he developed RSV, and ended up in the ER after not being able to breathe. The RSV damaged his lungs, and he developed asthma. At 6 months the ear infections started, and he had ear tubes put in at 10 months. For his whole first year, Sean was constantly sick. That continued until about age 3, when we had his tonsils and adnoids removed. Suddenly, he went from being sick every few weeks to hardly at all. Not sure if the surgery was a coincidence or not, but he's been a very healthy kid for the past 4 years.
We did, however, start to notice odd behaviors at around 18 months. He was just very hard to control. He didn't seem to listen at all, and when we tried to talk to him about things, it was like he was looking right past us instead of listening to us. He took off on his own a lot. We lived on a dead-end street when Sean was a toddler, and he would slip past 5 or 6 mothers on the street and disappear. We would find him just off by himself playing in someone's backyard or even in their house. His tantrums seemed more extreme than other children's, and we just couldn't get him to behave!
Preschool started reporting problems at age 5. He couldn't sit still, he couldn't follow directions, and he couldn't pay attention. His cognitive skills were terrible. Then, the impulsive behavior started at home. He would toss a bag of popcorn in the microwave, hit a bunch of numbers, and just walk away. He almost burned down the house one night.
Another incident that was scary was when Sean was in the bathroom at our old house. He heard someone outside and wanted to see who it was. He opened not only the window, but the screen, and the next thing we knew he was hanging out of a 2nd story window! When we asked him why he did it, he kept saying over and over that he didn't know. And we realized he really didn't know, and he couldn't control it.
What is calming for Sean? What is an agitator?
Most of what agitates Sean, and also what calms him down, is sensory-related. Many times when we have playdates at the house, Sean stays upstairs and plays in his room because the chaos of having so many people in the house upsets him. He actually goes upstairs on his own at this point when he knows people are coming over. Loud noises, crowds, and stressful situations can set off a meltdown. And, so can being told "no." If you think your kid screams when you tell him or her no, try experiencing the reaction of a child with Asperger's who already had a scenario developed in his head that revolved around you saying yes and going along with his plans. Hearing no can make things really ugly around here.
Another thing that agitates Sean is any changes or disruption in routine. If you make him eat before he gets dressed in the morning he gets angry. In his mind he needs to eat first and then get dressed. If BJ or I don't read him his 10-20 pages of DIary of a Wimpy Kid before he goes to bed, he's not going to sleep. You also have to be careful about telling him plans in advance. If things fall through and he was looking forward to a certain event, a meltdown will follow. He doesn't care if the car breaks down, if his brother or sister get sick, or the event in question is canceled. Routine is extremely important for a child with autism.
What makes him better? Touch and creativity. The main reason we gave up everything and moved to Wexford was for Pine Richland School District, and more specifically, Wexford Elementary. Working with them, we have learned calming an upset Sean can be as simple as hugging or holding him. When he first started at Wexford and would get upset, the paraprofessionals would wrap him in a blanket and rock him, and as silly as that sounds to do to a 7-year-old in school, the closeness calms him down. I usually try to immediately reach out and hug him when I see him starting to get agitated. It can really help ward off bad things from happening.
Another thing that calms Sean is art. The staff at Wexford Elementary has pretty much figured out what times and situation agitate Sean during the school day, so his "sensory diet" includes 3-4 breaks per day either in the sensory room or in his main paraprofessional's classroom. There he takes boxes, papers, and other little things we would consider garbage, and he creates art projects. He usually comes off the school bus at the end of the day with a bag filled of creations. There are too many to keep in the house, so I now plan on taking pictures of his creations, and then turning them into book for him. So even if we can't keep them or if they break, he still has that image to keep for as long as he wants.
I know that there are many trials you go through with Sean, but what would you say is the one thing about Sean's disorder that makes him a BETTER person?
I asked BJ to answer this question. And in his opinion, it's when he gets something, he REALLY gets it. He has a photographic memory, and even when you think he's not paying attention, he's absorbing everything you're saying or doing. He does it better than any "normal" kid out there. Once he gets an interest or a hobby that's it. He's knows everything about it and excels. And to see his face light up when he gets something he previously struggled with, like when he finally rode his bike, you can't help but celebrate right along with him. It's pure innocence and joy. With Sean there is no hidden agenda or sneakiness. With his condition he's blunt as can be, so when you see the joy on his face when he finds an interest, or gets something he had trouble with, no high can ever match it. This is why yelling or criticizing Sean never works. You encourage, even when you want to yell or give up. Because when he gets something, it sticks permanently.
Tomorrow night, technology permitting...it's Sean's turn to answer questions!
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