Mentoring for Fellow Parents

I've been walking the walk and following the path of autism for over a decade now. f I close my eyes I can still see the room where I received the news of my son's autism. I was sitting in a chair near a window not far from the doctor's desk. In front of me and to the left was a round table with an assortment of toys, puzzles, toy cars, legos. To the right near the door was a tall cabinet filled to the brim with toys as well. My doctor was sitting at his desk to my right looking at his pager and computer screen alternately as he told me in a monotone voice that my son had autism.

From that point I seemed to enter the Twilight Zone. The desk, toy cabinet and door appeared to recede and the floor almost seemed to stretch. When I looked up confused, it seemed as if the doctor was far, far away and I couldn't understand his words anymore. Had I taken a hit of acid without knowing?

That was almost 10 years ago. Before that time I really thought I was a 'model' parent. Since then I've grown in ways that I didn't think possible. I've learned more than I cared to about brain functioning, early childhood development, home repair and even plumbing and along the way I've been mentored and have mentored whenever opportunity has presented itself. In recent months I've had more than a few opportunities to offer what I've learned to lesser experienced parents. What folows is the answer to a few of those questions. If you have a question, feel free to ask away and I will do my best to provide the best of my experiences to assist.

I am trying to find out if you all have any suggestions for my high-functioning autism son (age 5 ½) who is very sound sensitive. Mark's (not his real name) school is still recommending earmuffs (the big, rifle range kind) as an accommodation for Ben when he is upset when other students are screaming, shouting or crying. Ben used his earmuffs at school A LOT last year, and has decreased his usage significantly this year. Another accommodation at school that works for Mark is to go out into the hallway (“quiet space”), sit and draw for awhile until everyone calms down. However, this removes him from the class rather than the disruptive child, hmmm? What else could we try?

What other sensory tools do you know of that might help Ben at school?

I can so relate to what is happening to your son. My son is very sensitive to sound, unless it is a sound that he is making. For the longest time it was baffling - how a child who produced so much noise could be sensitive to sounds that other people/things made. I don't think about it anymore, I just try to solve the problems that ensue. When he was younger, he was much more sensitive then he is now - he's 12 and can tolerate a lot more sounds then when he was 5 so it will improve. I did a lot of things to get where we are today - maybe a few will work for you.

1. Audio integration therapy. We did 10 days, twice a day when he was around 5. After he was able to tolerate the vacuum cleaner and refrigerator (and other background humming sounds) where wasn't able to before.
2. At school we did a lot of scheduling to make sure he new when a particularly irritating sound was coming up - school bells and the God awful fire drills.
3. Social stories for fire drills and school bells.
4. We paired him with someone who didn't mind the noise for him to model - this didn't work as well in early years, better as he got older.
5. Ear plugs - there are several different types. Morgan tolerates the soft ones that look like putty. They mold to the shape of his ear and stay in better. I also learned from experience to let him put them in - he seems to know how to make them mold to his ear the best. We tried the larger stick type with very little success - they would fall out and are a lot more noticeable. We were offered the personal PA system (where teacher talks directly to child in head phones) but I wanted him to eventually learn to filter sounds, so refused it.

Over the years Morgan has gotten much better with sounds. We still use ear plugs but in places that we didn't before. For example, he uses ear plugs during orchestra and music lessons. He has gotten to the point where he surprises me with the sounds that he can tolerate and yes he still produces a lot of sounds himself that can be annoying to others. But I imagine that will also get better too.

If you have a question that relates to your special needs child, add it to the comments and I will do my best to answer. If I don't have the necessary experience, I will consult with my many friends and professional associates for an appropriate answer. I have been fortunate in my history to have received much valuable information, resources and advice from parents that have been doing this for much longer than myself. I feel that it is my duty to continue paying it forward when ever I can, so ask away. Looking forward to it.