Dear Swim Instructor

Dear Swim Instructor,

You may have noticed my children didn't sign up for your lessons the last two sessions. If you wondered about it at all, perhaps you figured we stopped because the kids were tired of lessons or because we were busy with other activities.

But that's not why.

To tell the truth, Sky wants to keep taking lessons. He's proud of his ability to swim and loves being in the water. But, I just can't do it. I can't leave my kids in your hands, even though I am sure that swim lessons could benefit them both greatly.

The thing is, the last time we were there, Sky had one of his days when it's impossible for him to keep it together. He was loud, had a hard time following instructions, and had trouble minding the personal space of those around him. In other words, he had a pretty typical day for a kid with an autism spectrum disorder. It was difficult for me to watch him that way. It can be frustrating to see him miss out on opportunities because he's lost in his own world and heartbreaking to see how other people respond to him when he's so out of sync.

Do you remember what you said to me that day? My guess is that the conversation has long since left your memory.

You said, "Phew, I'm glad I only have him for an hour. I feel sorry for you!" Your facial expression (you were smiling) indicated you were trying to be light, maybe even funny. You know Sky is on the spectrum, though, and even if you don't quite get what that means, you should be able to imagine that he faces challenges that affect his behavior and make it difficult for him manage certain situations successfully.

Your comment made me wonder. I wonder if you would tell a mom whose kid is visually or hearing impaired that you're glad you only have to spend an hour with her kid? What about a mom whose kid has Down's Syndrome or whose kid is in a wheelchair?

ASD is with us 24 hours a day, every single day. It greatly impacts our lives. It limits Sky's ability to demonstrate his many talents. It cruelly allows him to seem "normal" when he's actually completely bewildered by the onslaught of input from the sensory, verbal, and social cues all around him. We invest much of our time and resources toward helping him function in a world that he is not suited for. It's exhausting. So you're right. You're lucky you only have to "deal" with him for just an hour out of your week. You're lucky you can go home to a family not burdened with autism.

I get that you probably don't really understand how my kid ticks. I get that he can be annoying. I even get that working with him can be demoralizing at times. But please don't dismiss him and his challenges. And, for the love of God, please don't offer me your pity.

Sincerely,

Mom on the Edge


PS -- I know you've been teaching swimming for awhile, but since 1 in 88 kids today has an autism spectrum disorder, it might not hurt to educate yourself about it.

Pink P, Ninja Sleeper

After years of multiple night-time awakenings, the pediatrician ordered a sleep test for Pink P. Her reasoning: before we tighten the screws with behavioral interventions, we need to make sure there are no medical reasons for Pink's actions. After years of disciplining Sky for doing stuff caused by his ASD, I'm all for making sure I don't do the same thing to his sister. 

Pink was unnaturally excited about the idea of sleeping in the hospital with Mommy. Seems she interpreted it as a girls night out (Maybe we should get out more?). The new pajamas with pink fleece shorts certainly helped. Beforehand, we talked to her about the procedure. Sky explained it best: "They're gonna put a bunch of stickers on you, but it won't hurt." Just in case, I packed a couple of her favorite DVDs.

It turns out I shouldn't have been worried about whether or not Pink P would sleep. But I should have worried about whether the one-year old in the room next door was going to sleep. It kinda stinks to leave my own one-year old at home only to have a different one-year old keep me up all night. At least with my own kid, I get a chance to sit in a cozy chair and snuggle. The most ridiculously uncomfortable pull-out couch at the sleep center didn't help my mood at all. And seriously, if you're going to do sleep tests, shouldn't you soundproof the walls and put the helipad on the other side of the building?

But enough about me and my grumpiness. Here's a picture (click to enlarge):



For the record: she slept like a rock. Probably better than's she's slept in a long time. In fact, she's slept soundly every night since. Figures.