Tuesday, July 17, 2007


A has Asperger's.
I saw a t-shirt once that stated: If you've seen one kid with Autism, you've seen one kid with Autism. How true. There's a reason Autism is now called a Spectrum Disorder - everyone is different!

But A still is considered Autistic.
For him that means lots of different things.

It means we can no longer go to the library without having to physically restrain him with a great big hug from behind at least four times to get him to not touch the computers. And that's when no child is already playing on one. If someone starts playing on the computer, he needs a lot more help than that.

It means that an adult has to physically follow him every step of the way when we go to someone else's house to make sure he doesn't reprogram their cell phone or remote control (don't laugh - he's done it before).

It means we have had to lock up our computer to keep him from ordering things off the internet.
It means we have to watch him carefully when he is allowed to play on the computer to make sure he doesn't navigate into inappropriate websites accidentally because he just enters words that he knows into the address bar and sees where they take him.

It means that I just had to pry the phone out of his hand because he wanted to call Kelly (our babysitter) "just for four minutes!"

It means that his temper goes from zero to one hundred in .26 seconds, and saying the wrong word sets him off, but we never know what the wrong word will be for any particular situation.

It means that his hands will cover his ears and his body will freeze up in terror unexpectedly and you always need to be on the lookout to see if and where he has frozen.

It means that due to sensory issues he has FINALLY only recently learned to use the potty, but if he gets involved in something else he loves, he could create a large puddle all around himself without even noticing.

It means if he could he would spin on a merry-go-round or tire swing non-stop instead of interacting with other kids.

It means that he has something in his mouth (or nose) at least 75% of the day.

It means that a change in his routine will cause a melt down.

It means that by late afternoon he has usually held it together as much as he can and goes into his own little world.

It means that anything visually stimulating (flashing lights, repetitive movement, mirrors) will attract him until he is physically removed from the situation.

It means he rarely sustains eye contact.

It means that he'll go up to total strangers to give them a hug and tell them he loves them.

It means that he does not understand or appreciate sarcasm or most humor on his own, but will laugh loudly if anyone else laughs.

It means that he misses all subtle cues.

It means that he can get up and dance as if no one is watching, even if all the kids around him stop what they're doing to gape at him.

It means that he flaps his hands or fingers when nervous or excited.

It means that he craves hugs and physical close contact.

It means that he will attempt to enter any conversation by hearing one word and commenting on it, even if it has nothing to do with the actual conversation.

It means that he learned how to read at a very early age.

It means that he is one of the most cuddly, social, precocious kids I know.

A has Asperger's. It does not define him, but it is an aspect of who he is. We have been working since he was diagnosed last year on helping him learn to live with this. He is very high-functioning, so much so that people will often point out how their own children do one or two of the things that A does, downplaying A's symptoms as if to imply that maybe A is actually just fine and all those doctors just labled him for no reason. That gets frustrating, but I think people mean well and are just trying to point out that he seems "normal", whatever that means.

A has Asperger's. This fact has connected us to so many other families learning to live with various conditions, syndromes, and disabilities. We didn't set out to be part of this world, but being part of us helps us realize how lucky we really are.


Kristin said...

Both of my daughters have ADD/ADHD. Most of the descriptors you use for your son apply/applied equally to both my girls. Although they are very high maintenance, they are my treasures. I don't know about the adult prognosis for Asperber's but, with a lot of coaching from me - and a LOT of talk with their teachers - one is headed for college this year, and the other is doing well going into her junior year of high school. I know I will still be on the hook for melt-downs, etc. for many years to come; thank goodness for text messaging. But I am cautiously optimistic. My elder is working for her degree in music, my younger, in science. You are a strong and brave individual, with lots of 'adventures' in the next few years. My girls finally grew out of some of the more socially-unacceptable behaviors; I no longer have to grab them (often) in public, though both still tend to dance and sing as the mood strikes. Good luck to you both.

Domestic Goddess said...

Sounds familiar...hmmmm...where have I heard this before?
Yeah, I love it when people give me the "My kids does that! My kid does that, toO!" And I feel like saying, "well, either your kid is autistic too or you just don't get the scope of what I am trying to say here! Your kid does NOT have a meltdown in Tarzhay when the speaker is too loud!"
Yup. The words don't define who he is. Nothing can change that. They are just words to help you get things you need so that he can be all he can be.

Lucy T said...

Thanks for sharing that Rachel. I have to admit, I did the thing you mention where I picked out the one or two or seven things I see here in this house on a regular basis. However, it was ME who does them! LOL!

Nancy the Romancechick said...

Thanks for this list, Rachel. I know next to nothing about Autism and it was very enlightening to see what you deal with. I have always admired you as one of the strongest women I know and this confirms that you are a great mom. Thanks again!

I know you didn't post it for that reason, but still!

natalie said...

My niece's son has Asperger's and while she has become well-versed in all that entails, I enjoyed reading this entry. You see, I have no clue and I feel like anything I say will either be mis-interpeted, coming off as just plain dumb, rude, or insensitive even though I don't intend it to be. WHen she comes over to my house or we see them at her own house it becomes stressful because anything I say or do is returned with "He has Asperger's" and he doesn't understand what you are saying. I'm not sure what to do or say! But, in the meantime, he is very physical with my own daughter and has reduced her to tears many, many times and yet I don't know how to respond to him when he does this. I want to be understanding and compassionate but as someone without a child with Autism, I don't have a clue...