Comments on: In the Audience

By: Andrea

Andrea — Sun, 20 Apr 2008 01:04:20 +0000

Good for you and Charlie! We just got home from watching my daughter perform with the Youth Symphony…and I sat there so proud of Reid’s behavior…composing a post in my head about how “practice makes perfect.” It was not always so! It is fascinating how different pitches are more tolerable and others more aversive. That of course is the argument for AIT and Samonas programs.

By: Kristina Chew, PhD

Kristina Chew, PhD — Sat, 19 Apr 2008 23:53:04 +0000

green drink = Sprite! (preferably from a can)

I started by taking Charlie to student variety/talent shows on my college campus. They are just over an hour long, free, and very casual (and often not too well attended). I set the goal for a Successful Night as 10 minutes originally—-little by little, as Daisy noted—and try to leave wen everyone’s still happy. Attention has definitely been growing.

AnneC—thanks so much for noting that about it taking some time to figure out what bothered you—-I have been wondering if Charlie has, of late, been much more aware of sounds, and so aware of the ones that bother him, and just of any sound’s effect on him. It does mean he likes the comfort of his fleece hood even on a hot day here.

By: Karen

Karen — Sat, 19 Apr 2008 23:34:19 +0000

How fun…you can add live shows to your list of things to do together.

By: Niksmom

Niksmom — Sat, 19 Apr 2008 22:25:17 +0000

How wonderful that you both got to enjoy the show! My fondest wish is to be able to share live performances with Nik. We’re slowly working our way there, I think. Last year he would scream and cry if I sang anything but kids’ songs; now he laughs and claps (albeit somwhat indiscriminately) and seems to enjoy the sounds. The attention span though…

By: Daisy

Daisy — Sat, 19 Apr 2008 17:11:34 +0000

I took Amigo to his high school’s production of Cats last year, with seats in the front row to help compensate for his vision impairment. It turned out to be too close and too loud; we left at intermission. This year, we went to Crazy for You and sat a little further back. Much better! Good for you to recognize his need for distance from the sounds.

By: alyric

alyric — Sat, 19 Apr 2008 16:35:15 +0000

Looks Like Charlie’s not about to let the sensory environment interfere with the fun of live performance. What is a ‘green drink’?

By: AnneC

AnneC — Sat, 19 Apr 2008 16:32:15 +0000

Not sure if this is relevant to Charlie, but I know that it actually took me quite a while before I even figured out that particular sounds bothered me. As a very young child I was described as “irritable”, and I do remember feeling uncomfortable a lot, but I had no way to articulate what was making me uncomfortable. It took me years to figure out that I COULD cover my ears to block out bad sounds, and that blocking out bad sounds made me less “irritable”.

I remember when I first started covering my ears more, my sister made kind of a big deal about it and said something like, “You didn’t USED to do that! Why are you making a big deal about noises now?” But it wasn’t that the noises didn’t bother me before, it was that I didn’t make the connection between “feeling uncomfortable” and “hearing sound” for a while, nor did I realize initially that I had any kind of power to do something about the uncomfortable-ness. (I actually had that about a lot of things — e.g., figuring out whether I was too warm, or hungry, etc.)

It can be difficult to figure out (and remediate) “what bothers you” when people around you aren’t bothered by the same things. I remember feeling like I was “supposed to” be bothered by things other people complained about but that I was not bothered by, and generally “bothered” at times when others were not but unable to articulate why. I’ve sorted a lot of that out now but it has taken a long time indeed.

However, in spite of all that, there were some areas where I just “did things” that seemed to be sensory-related that were actually pretty adaptive, but didn’t know why I did them at the time (putting blankets over my head, hiding in boxes/small spaces, etc.). And I did know to close/cover my eyes if the sun was in them (see here…I was about 5 or 6), and that certain food textures were unbearable from a fairly early age.