Friday, November 19, 2010

Week 7 - Progress!

We've mastered Level 1 for one of the exercises! He no longer feels dizzy when spinning slowly. That's a big change considering when we started, he was so disoriented that when we stopped spinning, he thought we had started spinning the opposite direction. We're not seeing any progress in any other areas, but we're celebrating this!

I've been wondering about something. I keep reading that Aspies have no imaginative skills. It's true that he's pretty rigid sometimes as far as "He's playing with that the wrong way." So he does have some trouble with seeing other uses for items. But that's not the norm for him. His norm is everything he sees is something else. His bat is a crutch or a gun. A sock is a glove, not because he doesn't know what a sock is for, but just because he wants it to be glove right then. His stuffed animals are all "alive" and have feelings. He has his own world that he's named and comes complete with it's own language (also with a name). He's in his make-believe world more than he's in the real one. And John Elder Robison (author of Look Me in the Eye: My Life with Asperger's) apparently had quite a vivid imagination growing up. He not only told some amazing tall tales, he had people believing them. So I'm having trouble with the "no imagination" thing.

I also had several people tell me that my son couldn't possibly have Asperger's because he likes to cuddle. He does like to cuddle, more than I'm usually comfortable with because of my own issues. But he's very sensitive to clothes. I'm not sure if I'm asking something here or just pointing out that while there are certainly Aspie "generic" traits, every person is an individual and every person acts differently.

Saturday, November 13, 2010

What Your AD Child Wants You To Know

This list is from The Asperger's Answer Book: The Top 300 Questions Parents Ask.

What Your AD (Asperger's Disorder) Child Wants You To Know
  • I may overreact for no apparent reason, but usually I have a reason I just can't say yet.
  • Just because I was able to control myself for several days does not mean I can today.
  • I don't misbehave on purpose, and I am not trying to defy or annoy you.
  • Don't expect me to be smart in every subject just because I have a great vocabulary.
  • Please don't tell me to "work it out" with my classmates; I have no idea how to do that.
  • I love to talk and do not know when to stop. Gently remind me to "hold that thought."
  • I am at my best when every day goes predictably. Please try to have a routine in class.
  • Please warn me in advance of upcoming changes since I do not cope well with change.
  • Keep a close eye on me in group activities because I do not do well in groups.
  • I am at risk for trouble when I have unstructured time. Please help me find things to do.
  • I learn and understand best with visual materials. I like charts, pictures, and schedules.
  • I have to be told in each setting how to behave even if it is similar to other settings.
  • I like to asked or suggested rather than rigidly forced to do something.
  • Please give me a place to go if I feel like I am getting out of control.
  • I respond best to calm and patient authority figures.
  • I can complete things best if you tell me only one step at a time.
  • When I talk about the same thing over and over please gently suggest I talk about it later.
  • I am overly sensitive to criticism and will overreact to being told I am wrong.
  • I will stop my misbehavior more if you redirect me instead of criticizing me.
  • I am at risk for trouble with transitions and will do better if you help me create a routine.
  • I can follow directions better if you tell me one at a time.
  • I understand explanations and instructions better when they are short and simple.
  • Sounds, lights, smells, textures, and touch may upset me greatly, and I have to get away.
  • I am not good at games or ball, and I may refuse to play because I am embarrassed.
  • I do my best when the setting is quiet, calm, and not to stimulating.
  • I respond well to visual cues (e.g., pointing to your ear for me to listen).
  • I am slow to respond if you ask me a question, so please give me time to answer.
  • My brain does not work well if I am interrupted. I usually insist on starting all over again.
  • Please do not insist that I look you in the eye. I am very uncomfortable with eye contact.
  • When I lose control over my anger please send me to my quiet place to calm down. (The quiet place is a refuge, not a punishment - Amanda)
  • I just can't ignore the teasing, so please help me find nice children to play with.
  • I don't understand jokes or sarcasm so you might have to explain them to me.
  • I follow instructions better when they're repeated several times.
  • Even though nothing anyone does can cure me, I need your support every day all year. (I think it can be cured, but even if you don't, there ways to reduce some of the symptoms to make your child's life easier, such as a gluten-free, casein-free diet. -Amanda)

Thursday, November 11, 2010

Week 6 & Some Randomness

So after six weeks of doing the exercises 3-5 days a week, I'm seeing a few changes in the results I've written down. He no longer feels like he's still spinning after the chair stops and he's averaging 1-2 more curl-ups per minute than he was at Week 1. I'm not seeing any other changes either in his everyday actions or his exercises.

I've been reading quite a bit about Asperger's and someone recommended Look Me in the Eye: My Life with Asperger's by John Elder Robison. This is an *amazing* book. Some parts are laugh-out-loud hilarious and others are so heart-breaking it'll bring tears. Robison is a wonderful writer and a great story-teller.

Another book I've read recently is The Asperger's Answer Book: The Top 300 Questions Parents Ask. This is a helpful resource with information about everything from getting a diagnosis to ways to teach your Aspie child some of the social skills most people just know naturally. The one thing I didn't like about it is that it does not mention diet anywhere in the book, even though countless families have had great success with a gluten-free, casein-free diet. But it's still a good resource.

Sharing on this blog has been very hard for me. I don't like sharing personal information. I'm not just talking about my address and phone number. I mean actual personal information. If you're a facebook friend, you're probably thinking, "Yeah, right," because I'm posting all the time. But if you really think about it, I don't share really personal things on there. So putting my feelings here has been tough, but I felt like if I was going to reach other parents, I needed to be honest and open. So here's some more: The more I read about Asperger's in order to understand and help my son, the more I recognize myself. I'm not sure I'm far enough along on the spectrum to be officially diagnosed with Asperger's but I definitely have some Aspie tendencies.

I got along socially well enough and I had some great friends in school, but I also felt like I was on the outside looking in most of the time. Like I was missing something. Not as in "my friends aren't enough", more like some basic understanding was just out of my grasp. I don't feel comfortable looking people in the eye, but I've trained myself to do that because it's expected and I feel like if I don't look someone in the eye, they'll think I'm lying to them. Sometimes I still can't quite manage it, but most of the time, I can. I can't do small-talk or chit-chat. I always thought I was just rude. I didn't want to be or intend to be, but I just couldn't do it. Only in the past couple of weeks has it occurred to me that maybe I'm just not wired to do that. I still feel rude, because, again, it's something that's expected in our society. I can talk to people just fine - as long as I have something to talk about. Even in my writing, my thoughts sometimes run together without transitions because I just want to say what I want to say. Sometimes, I realize that it sounds too rough and I have to let the post sit for a day or two so I can come up with transitions to connect Thought A to Thought B.

I'm pretty good about catching nonverbal cues - I think. But that's because I've trained myself to watch for looks of boredom or lost interest because of a totally different factor that relates to someone else which I really *can't* share here.

I can never sit still; something's always moving. Right now, my foot is doing some weird thing and if I try to be still, something else will just start tapping or moving. Or the thing I'm doing with my thumbs as I type. I don't even know how to describe it. Just weird tics I've always had. I've never had the clothing sensitivity that my son has, but I do have to have room in my shoes to wiggle my toes. Have to. They can't just fit. They have to be big enough so I can wiggle my toes. I don't mind hugs as long as they don't last all day, but too much skin-to-skin contact makes me itchy. I could never figure out what was wrong with me. I love to snuggle with my kids, especially in the mornings when we first wake up. But when my son starts rubbing on me (because of his tactile issues, he is always wanting to touch someone), I get irritable. I feel like I'm coming out of my skin. I would think, "What kind of mother am I, that I don't want my child to touch me?" Then I would sit down and snuggle with him and think, "This is okay." The difference is *how* the contact is made.

So, while I started this journey hoping to help my son change the things we can and learn to cope with those we can't, I've ended up learning something about myself. And I feel the same way that I did when I got his diagnosis: In a way it's a relief, because you can finally point to a reason for all the things that just weren't making sense, but it's also a little scary because now you have this whole new "thing" to learn about.

Friday, November 5, 2010

Week 5

Sorry I lost a week. During Week 4, we were having several days of storms here, so there were days I didn't even turn on the computer. The laptop was on just long enough to get schoolwork done. We're pretty much still at the same place on all the exercises, though. He's still only doing the eye patch/music exercise for 35 minutes (the length of the CD) a day. I ask him about once a week if we can try doing it for an hour, but it still irritates him, so I'm not pushing it.

I've been thrilled to notice that for the past few weeks, he's been able to find kids to play with when we go to park days or PE or parties. Right now, that's all that matters. He's happy. I'm happy. I don't see any changes in his behavior so I don't see how it could be related to the program, but it's still a positive change, so it works for me. The exercises we can work on for months if we need to, but a 9-year-old boy (he had a birthday this week) needs friends.

I've been calling around trying to find a place to do IgG (food allergy & sensitivity) testing. Specifically, one that will be covered by the insurance. My husband was talking to his chiropractor about it and they do the testing there. I hadn't called them because they're about an hour away (near my husband's job), but I'll call them today and see what we can set up. So hopefully, we can get that taken care of soon and take some of the stresses off his body.
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