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.

Thursday, October 21, 2010

Week 3: Day 4

We haven't seen any progress this week, but we're holding steady. Well, he hasn't complained of a headache while listening to the music for the past couple of days, so that's something. We're still on Level 1 of everything.

I took him to be tested for food sensitivities this morning. That was a horrid experience. I couldn't decide which blog to put it on: my personal blog or this one. I finally decided the actual details were more a personal thing than related to this journey, so if you want to read the details, you can do so here. Otherwise, I'll just say we couldn't get the test and we still don't know what foods he's sensitive to. So now we have a dilemma. Do we go another route and spend money we can't really afford right now for a different test or do we just keep trying the gluten-free, casein-free experiment that we've been doing for the past few months, or do we just go back to eating regular food? Quite honestly, we weren't seeing any improvement with the gluten-free, casein-free diet anyway. However, I have to mention that we weren't 100% super-strict with it. We only have gluten-free, casein-free items in the house, but eating out or at others' homes, we weren't as strict. So there is the possibility that if were more strict about it, it would be effective. The other possibility is that there are other foods that are a problem for him besides just gluten and casein. Either way, I'm not discounting a GFCF diet. But I think until we can have him tested, we'll probably go back to eating regular food. (I'm talking about whole foods, not pre-packaged foods.)

On another note, we had a park day yesterday with a new group and there were about 10 kids there of various ages, a few older than J, and they were all playing together wonderfully. I'm not leaving our regular homeschool group by any means and he does have a couple of friends in that group, but it was great to see him getting along with so many different kids. It made me smiley. :-)

Tonight Comedy Central is holding a fundraiser for autism awareness. My friend Deanna wrote a great post about this (that's how I found out about it). If you'd like more information, you can read Deanna's post here.

Friday, October 15, 2010

Hear That? That's My Heart Breaking.

As we were driving to meet up with our homeschool group for P.E., he said something I will never forget. He told me in a very matter-of-fact tone, "I know why I don't have any friends anymore. It's because I'm weird. I do stuff other people don't do." Unless you've experienced this, you can't imagine how heart-breaking it is to hear your child say something like this. It made me even more determined to help him find his way. I told him, "You're not weird. Everybody's different." I didn't know what else to say and even that didn't seem to help much. It's hard when you're dealing with a kid who's really smart. He knows something's not right.

He does have a couple of friends, but it's true that as he's gotten older, fewer kids click with him. They've moved on and he's kind of stuck spinning his tires. He's always played well with younger kids and fortunately as homeschoolers, we have the advantage of a mixed group of kids. He's not sitting in a classroom surrounded by kids who are chronologically his age, but emotionally years ahead of him. I'm not sure "emotionally" is the right word, but mentally doesn't really fit because he's so smart. He's ahead in his schoolwork and he's always tested above grade level. So "mental" isn't really what I'm looking for. "Emotionally" will have to do. When he's playing with younger kids, though, he's as happy as can be. Since he's not rough or mean, none of the moms have a problem with him hanging with the little ones. Actually, they talk about how good he is with the little kids. So for now, I'll just make more of an effort to get him together with the kids he *does* click with so he doesn't feel so left out. And we'll keep working on the program.

Thursday, October 14, 2010

Week 2: Days 3 & 4

Yesterday, time got away from us and the only thing we got done was the music/eye patch time (still at 35 painful minutes) and activity time. At least now he enjoys being outside for some reason. He's always enjoyed playing outside at the park, but not at home. Part of it is that there are other kids at the park, but that's not all of it. Maybe part of the reason he's wanting to be outside more lately is because his brother is finally getting old enough to play with him outside. Whatever the reason, I'm glad. Of course, now I have to drag them both back in so we can get other things done. Like schoolwork and eating.

Today, we used my yoga mat and that seemed to help with the carpet distractions. His balance is still running steady. He's wobbly, but I can see an improvement. I can also see how hard he's trying. I keep promising him this will all pay off. I have to believe it will. The small changes I've seen so far have been encouraging. He's still wobbly with the bridge, but he's able to hold it for 60 seconds. Now, before he does his curl-ups, he argues about the name. Because picking things apart is one of his favorite past times. But he did 10 today, of whatever you want to call them. We went outside so he (they) could run. He did jump rope until it got too windy. Previously, he could only do two jumps before he had to start over. One day, he did three. Today he did several, five or six. Neither of us counted, for some reason, but he did notice and I did congratulate him. Accomplishments like that really help his confidence, so I was really happy to see it. I suspect it was more a result of all his practice than anything else, but whatever works.

Our big success of the day was the number tracing exercise. He got three out of three of the numbers right!

Tuesday, October 12, 2010

Week 2: Days 1 & 2

Two days into Week 2 and while I hadn't expected any progress this early, we are seeing some physical progress, although behaviors have stayed the same.

He's working on the deep breathing, although at this point it's more like he's blowing up a balloon than slowly inhaling and exhaling. But anything that doesn't require going 100 miles an hour is going to take us some time to work into. The stretching is still not "calming". I wonder if the carpet (or rather the distraction of lint on the carpet) is a factor. Tomorrow we'll try a towel or maybe my yoga mat under his head and see if that helps.

He's still having a lot of trouble with the eye exercises. We do it as long as he can stand it, which isn't long. He's still on Level 1 on all the exercises. He barely makes it through three of the ten slow-tracking exercises, so we've got a long way to go there.

He finally got over his cold and I tried the earplugs, but that was not happening. He can deal with ear-muff-type protectors over his ears, but the little ear plugs in his ear is just too much. So we're just sticking with the eye patch and CD while he does part of his schoolwork. We're supposed to work up to two hours. Right now I have to coax him to finish the 35 minute CD. Both the music and the eye patch bother him. He's also wearing the one sock around the house for part of the day. He calls it "The Sock of Wisdom". LOL

But we do have some progress! I can spin him now and stop without him feeling like he's still spinning. He's still feeling dizzy in his head & stomach, though. His balance exercise, where he puts one foot in front of the other, is improving a little. His best time last week was 13 seconds. Today he made it 20 seconds with one foot in front and 19 seconds with the other. The book doesn't say to do it both ways, but we were experimenting to see if one was better than the other. On his bridge core exercise, he can hold himself all the way up for 60 seconds (today and yesterday), but he's wobbly. He's supposed to be strong enough to hold still while he does it, so even if he does it like this the rest of the week, he's still not quite ready to move up to Level 2.

He still needs work on the Prone Bridge Core Stability exercise. He can hold his limbs up for 15 seconds, but not straight and not strong. He did 16 Curl-ups today and we're still working on those push-ups. I've got him doing knee push-ups so he can work on his form, then as he gets stronger, he can move to real push-ups. He's still not getting any of the numbers right on the Number Tracing exercise.

We went outside yesterday for his Aerobic exercise, which was running in place. Or running anywhere. There are just too many distractions outside for this to work. He kept wanting to stop and pick up sticks. (We went out later so he could play with sticks.) Today was jumping. It was supposed to be jumping in place. We started inside, with the jump rope as a circle for him to stay inside. After a minute or so, he asked if he could jump rope. So we went outside and he jumped rope for about 10 minutes. He got up to three jumps without missing.

After several days debating with myself about how to go about the food testing (biofeedback with a naturopath I don't know, blood testing referred by a holistic doctor I don't know, or blood testing referred by our regular pediatrician, which is more likely to be paid for by insurance), I called our pediatrician and asked for a referral. When I called the allergist's office, the lady who answered the phone didn't even know if they do food sensitivity testing. I told her I really didn't want to pay my co-pay only to get into the office and find out they couldn't do what I want. So she put me on hold to go ask. Turns out they do the testing, so he has an appointment on the 21st. Maybe with the food issue clear, we can make better progress... Not that I'm complaining. It's a 12-week program and we're only in Week 2. And I fully expect to have to work for longer than 12 weeks. The Brain Balance center expected him to need two 3-month sessions because of the wide discrepancy between his "brain age" and his true age. I don't see how I can expect to make quicker progress at home.

I was trying to figure out why I feel so worn out since we started this. It's not that demanding, really. It only takes us about an hour every day. I think it's just emotionally draining. And now Little Brother has decided that he's ready to use the potty, so we have that thrown into the mix.

And your riddle for the day: What do you get when you cross rain with a bow?
Answer: A wet bow
His dad & I were silly enough to both say, "a rainbow".  If he's already smarter than we are, at 8, we have a looong road ahead. LOL

Thursday, October 7, 2010


We didn't do any exercises today. Well, that's not exactly true. We did the breathing exercise and part of the stretching exercise. Then his nose started bleeding. I've never known a child to have nose bleeds as much as he does. They come in spurts, and sometimes he'll go months without one. But today we had to stop so he could take care of his nose. Since we didn't start until late afternoon, it was almost time to go to karate by the time his nose had stopped bleeding, so we didn't finish. He had online classes this morning, then lunch, so we got a late start. He did get his music/patch time in between his classes. I think it's going to take us a while to build up to two hours with that.

Since I started this journey, I've been thinking about labels. I'm a wanna-be unschooler and many unschoolers have a problem with putting labels on children. I do, too, in a way. I've been pondering this, though, and I agree with what a friend said recently: "She asked me if I ever had him tested and my response was no, I didn't want to label him. That was only a partially true response, cause in my head I give him labels all the time." What my friend and I (and I suspect most others with a labeling issue) want is to avoid our children being put in a "box" and having others decide what they are capable of or allowed to do because of a label. Or how we as parents should treat the children. We've all heard of the schools that try to make the parents put their ADHD child on drugs. (BTW, I understand it's illegal for the school personnel to tell you your child needs drugs.)

But a label doesn't have to be a bad thing. It can help you connect with others in a similar situation so you can learn coping strategies and maybe even ways to alleviate or cure the condition. And it certainly doesn't define your child. My son is the same smart, funny, sweet, loud, cautious, protective kid he always has been. He didn't suddenly become Asperger Boy because we have a diagnosis. The diagnosis just puts some pieces together for us and gives a direction to look for help. Because every parent needs help. It's just a matter of what we need help with.

And if we refuse to label our children, where should we draw the line? I think I shall label my son Smart, Funny, Sweet, Loud, Cautious, Protective Boy. Would that be okay?

P.S. Because of something I wrote recently, a certain friend may feel this is directed toward her. It's not. I've been thinking about this for some time and decided to write about it tonight because I didn't have anything else to write.

Wednesday, October 6, 2010

Week 1: Days 1,2 & 3

It's taken us a couple of days, but I think we're getting a feel for what we're doing. Monday we hit a few snags due to a cold and not being properly equipped. (I read the whole section again on Friday or Saturday so I'd know what we would be doing... and still managed to not be prepared. I'm talented that way.)

The first thing is to learn to breathe deeply from the diaphragm instead of the chest. Our problem right now is that he has a cold so he can't breathe through his nose, which is what is called for in this exercise. So we tried, but it didn't go well.

Then we have the Proprioceptive Joint Distraction Exercises. Big long words for helping your kid stretch. It's supposed to help center and calm the child. Now, I like to think I'm a pretty intelligent person. And I can read well. So I'm not sure what I'm missing here, but even following the directions *exactly* we're not getting any "calming or centering". Maybe it comes later? We'll keep doing it, but I wonder...

We're not doing the Olfactory Exercises. The instructions for this exercise keep mentioning improving the sense of smell and the lack of sense of smell in most kids with right-hemisphere deficits. Since he has a hypersensitive sense of smell, there is no point in us doing this exercise, if I'm reading the directions correctly. Someone else may read the parts of the book I've had trouble with (see my posts tagged "Assessment") and totally get it. But since part of the purpose of this blog is to share my personal experience with the book and the at-home program, including anything I found confusing, I'll just have to risk sounding like an idiot.

The vision exercises are interesting. He can't cross his eyes, so he sees double from pretty far away compared to most of us. I don't know how he reads, but he reads all the time, so I guess he's managing. For the Fast Tracking exercise, he gets distracted after about 5 times and just starts looking back and forth at my fingers. We stop at that point. We're supposed to do the Slow Tracking exercise 10 times, but stop if the child loses interest (that doesn't take long; we've already established that distractibility is an issue; that's how we got here in the first place) or blinks excessively. We had to stop one day because his eyes got tired, but the other two days, he just lost interest. We got 5-6 times in each day. We're working up to 10.

Which brings us to the fun stuff. In the Light-Blocking exercise, he's supposed to wear an eye patch for 30 minutes and work up to 2 hours with it. Covering the right eye is supposed to stimulate the right side of the brain. That's Level 1. Level 2 is wearing a pair safety glasses with part of the lenses blacked out. Somehow, I misread that section and went straight to the safety glasses. When I realized I needed an eye patch, I thought I would just use one of his bandannas until I went out to get a patch. Really? Do I not know my child by now? What was I thinking? So we handed the tied bandanna to Little Brother, who went around with a headband for a while and we went out Monday afternoon to buy an eye patch. ($2-$3 at a drug store if you're wondering) So he wore the patch for 30 horrible minutes while he watched TV Monday afternoon. Well, it wasn't that bad for me, but it drove him crazy. Tuesday and today, I put the Brain Balance CD in my laptop, the patch on his eye and he listened to the CD while he worked on Study Island (part of his schoolwork). Apparently, I'm going to have to buy another eye patch, because the little one yells, "Yo ho ho!" when he sees the patch and gets mad because he doesn't have one. He'll only wear it for a minute before he gets tired of it, but it'll be his and he'll have one just like his big brother.

As for the CD, that's another place I wasn't prepared.  But it wasn't because I wasn't paying attention. It's because I'm almost as easily distracted as my child. I meant to buy some ear plugs when he and I went out Saturday afternoon to run an errand, but I forgot. Level 1 is to have your child get used to wearing an ear plug. Just one. Remember we're stimulating one side of the brain. The CD came in the mail Monday, but I didn't realize what it was, and since my husband's name was on it, I didn't open it. So we didn't do any sound exercises on Monday. With his cold, his ears are stopped up (at least he feels like they are, which is pretty much the same thing) and he wasn't willing to try the ear plug. Since the instructions say that the music is beneficial even without the ear plug, I went ahead and played the music. As soon as he's un-stopped, we'll do the ear plug. I want to do the program as closely as we can, so we don't get to the end of 12 weeks and end up saying, "Oh, well maybe I should have done it *that* way." I'll just follow the road map the best I can.

We enjoy the vestibular exercises, too. The vestibular system helps the child orient themselves in the earth's gravitational pull and helps them maintain proper posture and balance. We're still on Level 1 here and probably will be for a while. This is a spinning exercise wherein the child is supposed to identify which direction his chair is spinning and not be dizzy when he opens his eyes. Well he's not dizzy when he opens his eyes because he gets all that out of the way while his eyes are still closed. This is a slow spin we're doing. One rotation. He can tell which direction we're going, but when I stop, he says we've stopped, and now we're going the other direction. His eyes are closed and I've never told him how many times we go around or which direction we're going. He does say his stomach feels funny while his eyes are closed. And of course, after he has his turn, the little one has to have his "Wheee" time, too.

But we have nothing but time because we're also going to be working on the proprioceptive exercises for a while. Proprioception deals with spatial awareness and this is one of our big issues. For a little bit of balance fun, he is supposed to stand with one foot in front of the other for 30 seconds without leaning or falling. His highest time is 13 seconds. He does this exercise with one sock on to stimulate the weak side of the brain (stop me if you've heard this one before). I also have him wearing the one sock for part of the day. His Supine Bridge Core exercise (think yoga bridge) ranges from 29 wobbly seconds to 60 wobbly seconds. He's supposed to have 60 firm seconds for four days in a row before we move to Level 2. The Prone Bridge Core Stability Exercise isn't going much better. It does help when I can keep his brother from walking on him, but unfortunately, we can't blame the whole problem on that.

Curl-ups and push-ups... Before we started, I knew this would take at least 6 months. I'm still sure it will take at least 6 months. He's not anywhere near his minimum for Level 1 on curl-ups and we're still not getting even one good push-up. His muscle tone should improve as the other things start working and that should help with these exercises.

The Tactile Desensitization Activity involves brushing the forearm and leg on one side of the body to (say it with me) stimulate the weak side of the brain. I'm using one of our water color paint brushes and of course the little one has to get in on it, too. He wants to brush everyone and be brushed. I have to take care that he doesn't do the opposite of what I'm supposed to be doing. Then we do the number tracing exercise, which goes as well now as it did in the assessment. I know how hard this one is, so I have to wonder how he'll be able to do it even when he can feel it better.

Aerobic exercise is very important for brain activity for *everyone*. The book suggests six specific activities for kids in the program: running in place, jumping, jumping rope, running, jumping jacks and a mini-trampoline. We don't have a trampoline at this time (we had one in the play room for several years, but the "bouncy thing" finally lost it's bounce), so I'm just using one activity a day so he doesn't get bored with one thing. Monday was running in place and yesterday was jumping. Then, yesterday evening, we all went to the park for a walk. How did it go from being to hot to walk comfortably to almost being to cold to walk comfortably with nothing in between? That's just not fair. *sigh* But we all got some exercise (except Little Brother who rides in the stroller) and J & his dad got some hang out time. Since I can't comfortably walk and push the jogging stroller at J's slower pace, I always end up way ahead of them and they get some time together without the little one.

Today was jumping rope. Just in case you were wondering, jumping rope is not the easiest activity for someone with gross motor skill issues. He was gung-ho about it, though, and we spent about 15 minutes outside jumping rope. Or trying to.

Thursday, September 30, 2010

If It's Wrong, I'm Not Sure I Want To Be Right

Maybe it's wrong, but I felt a little twinge of satisfaction this afternoon. We homeschool (actually, he's enrolled in a virtual public school), so while I did send an email to his assigned teacher with the information she'll need to work with him, I do most of the actual "schooling". The only formal class or activity he's involved in right now is karate. He's been taking classes for about three years now. The instructors at his school are *wonderful*. However, they're working with anywhere from 15-30 kids per class and karate is all about discipline. I've watched many times as he's looked around in confusion after the class was given instructions because it didn't quite sink in before everyone was running around to do what they were supposed to do. Of course, the obvious conclusion is that a child who doesn't know what he's supposed to be doing, wasn't paying attention. And we've struggled for years with sit-ups and push-ups. At one point, I even asked one of the instructors to show J and me how to do a push-ups correctly, because I thought maybe he was having so much trouble because he was trying to do it wrong.

*None* of the instructors ever scolded him or made fun of him for any of this, yet as a mother, I couldn't help but feel a little bit of, "I *knew* my child wasn't lazy or goofing off in class" when I (calmly) talked to one of the instructors this afternoon and told her he has Asperger's, his "inattentiveness" was actually caused by auditory processing issues, and that his problems with the sit-ups and push-ups were because the part of the brain that controls muscle tone is also affected. At least I made it through the  "Mama Bear" moment without growling at anyone.

Tuesday, September 28, 2010

The Diagnosis

It's officially Asperger's. It was a little disconcerting to hear that, even though I was expecting it. Brian Balance doesn't focus on labels like Asperger's, ADHD or autism. Rather, those and other neurological disorders are either right-hemisphere deficiencies or left-hemisphere deficiencies. This is all explained in-depth in the book and on the Brain Balance website, so I won't go into it here. However, they do have a scale of ADHD, Asperger's and autism. He was definite for ADHD and Asperger's, with one breath away from the autism line. That was a shock. I wasn't even sure he would be positive for Asperger's.

That result came from questionnaires they had me fill out about his behaviors. They also did extensive testing in the Center. They use what they call "brain-age" to determine if and how far a child is behind. He scored an age 10 on the cognitive tests (including having a 7th grade vocabulary - minus the curse words) but only an age 5 on the physical tests (gross motor skills, fine motor skills, balance, auditory processing). He is 8, almost 9, so you can see where this would be an issue. The biggest problem, though is that the hemispheres are so far out of balance.

One of their test is a "pseudoword decoding" exercise, where they show the child made-up words to test their phonics skills. (He scored "greater than age 19, 11 months" on that one.) The Center Director went over all the the results with us, but that's a lot of information to process in one hour, so I went through everything when we got home. I was reading her notes on his cognitive tests, which she didn't mention at the meeting. I literally laughed out loud when I read it. Remember that imaginary world he lives in? Well, it has its own language. He's all the time telling us what some word (sometimes made up, sometimes just appropriated for his own use) means in his language.  This is from the director's notes: "He said some of the words on pseudoword decoding were real words in his imaginary language... He was fun to work with." LOL I can just see him telling her that.

He is also very sensitive to light (we already knew that, but again, sometimes, it sounds different coming from someone else) and although most of his body, particularly his legs (I was thinking of the tactile test we did yesterday when she mentioned this), lack sensitivity, his head is hyper-sensitive. That would explain why it "hurts" to get a haircut. He says he can feel the hairs getting cut. These days, he'll go get a haircut without crying, but he still complains about it.

So, now I'll be doing what I do best: research. Even though I plan to do the program with him, it will take a few months to show results and in the meantime, I need to know how to help him (and me) deal with everything.

It only recently occured to me that we may be dealing with Asperger's. When I would mention it to people, I got varying reactions.
"He doesn't act like other kids I know with Asperger's."
"He's just a boy. There's nothing wrong with him."
"I don't believe Asperger's is real. It's just one more thing that they've made up to label healthy kids who are outside the 'normal' behavior."
"Really? He seems fine to me."
Most of those things were nice to hear. It meant that others see my son as a normal little boy. But they were (unintentionally) criticisms of my parenting and common sense. If I were not as strong or opinionated as I am, those criticisms may have kept me from seeking help for my son. But I knew something just wasn't right. I'm the one with my son all day every day. I'm the one who sees him at home and with our extended family where he feels comfortable enough to be himself. There are some behaviors, of course, that he can't control at all, but there are some that he holds in check until he gets home. (Wait... that must be bad parenting. How silly of me.)  Really, though, if you have concerns about your child, do some research and talk to a professional who will help you. If you choose to mention your concerns to friends, be prepared for all kinds of responses, but remember that no one knows or loves your child like you do.

Here's a great page I found through a friend's blog. It's called Letter to Grandparents, but really, anyone who is around an Aspie needs to read it.

I'm getting some vibes from a few people who are wondering why I'm trying to change my son instead of just accepting him the way he is. Well, I've accepted him this way his all his life, haven't I? He's my first-born and will always hold a special place in my heart. I don't want to make him into someone else or make him feel like he can't be himself. But if he had a disease that caused him pain, and would always affect how he lived his life, and I believed there was a way I could cure him by taking an hour out of my day every day for six months, what kind of mother would I be if I didn't do it? So he has Asperger's. Okay. I believe it can be cured. Maybe not by me. In the end, we may have to see what our options are and if there is any way we *can* afford the Brain Balance program. But it's possible. The program is just a series of exercises, each with a specific goal. He knows it's about helping him to be able ride his bike or be calm or be able to go to a movie theater. He's not being told or made to feel "Something is wrong with you and this is how we're going to fix it." We're focusing on the things he wants. So, no, I'm not someone who can't accept and appreciate my awesome child for who and what he is. I'm someone who knows there is a whole world out there that my child has never experienced and I am going to do what I can to open up his possibilities so he can be anything he wants to be.

Monday, September 27, 2010

Wrapping Up the Assessments

I finished up the at-home assessments this morning so I wouldn't be influenced by the results we get this afternoon.

When we stopped, we still had one visual test to complete. The Crossing Eyes Test; he can't, which is Level 1.

Proprioceptive Function Checklist: 80 (scale 10-100)
Standing Balance Test: Sways to the right. According to the book, he should sway in the opposite direction of the weak side. That didn't work for us.
One Foot in Front Of the Other Test: with eyes open, he sways to the right. Again, not what the book tells me to look for. I know his right side is his weak side, and I'm not sure how you can mess up a simple test like this. With his eyes closed, though, he sways to the left. Actually, he fell to the left. Regardless of the side, he's at Level 1 here.
Supine Bridge Core Test: stayed up for 20 seconds. Level 1
Prone Bridge Core Stability Test: Right arm: 7 seconds; Left arm: 6 seconds; Right leg: 15 seconds; Left leg: 10 seconds. Level 1
Curl-ups: 7 Level 1
Right Angle Push-ups: 0 Level 1 He has to do pushups for karate and he does them, just not properly. We're doing this at just the right time, because he's getting to a point where his belt level is too high to allow him much leeway.
The results list at the end of this section was a little confusing because it lists places to check right and left even on exercises that don't differentiate between sides (like Bridge, Curl-ups & Push-ups). Also, for the sway tests, (which already had confusing results), at the point of the tests, the books says to, "Record the side of the brain that is opposite the sway." (There is a place on the page to do this.) Yet at the end of the section, it says, "Record the results of the assessments here. If the results lean heavily to one side, (like your child - no, wait, the book doesn't say that) it is an indication of a deficiancy in the other side." Now is it me, or are the two sets of directions contradictory?

Tactile Function Checklist
Hypotactile Symptoms: 32
Hypertactile Symptoms: 55 (scale 10-100)
Tactile Assessment
Simultaneous Sensitivy Test: Usually left arm felt strongest pressure. We got mixed results on his legs; what was interesting was that I was rubbing my finger down his leg and thought I was going up. (His eyes were closed.)
Tactile Sensivity Test (one limb at a time): arms felt the same; legs: 2 left, one same
Number Tracing: left arm: 0/3; right arm: 1/4 (the one he got right was "1") This involved using the eraser end of a pencil to "write" numbers on the arm and trying to guess (with eyes closed) what the number was. I let him to do it on me, and it was hard for me to tell the difference. 5 and 2 are especially hard to tell apart.

Olfactory Function Checklist
Hypersensitive: 32
Hyposensitive: 28
Olfactory Assessment: Sense of Smell Test: I used lemon and tea tree scents (essential oils I had), cinnamon, and peppermint-scented Dr Bronner's soap. When we did the test, neither of us could smell the soap, which I find really odd since the scent seems to linger when I use it for something. Anyway, the other three served our purpose. He couldn't smell any of them until they were right under his nose, then he complained loudly about the smell. This happened with both nostrils.

Hemispheric Assessment
At the end of the testing section is at checklist. It's a little confusing because it says to record the results of all the tests and checklists we've done. Except there is no Postural Checklist and it's listed there along with everything else, with the same spaces for recording certain results. So don't bother flipping back to find the results of that Checklist, just move on. I love this part: "For each list, the lowest possible total score is 10 and the highest possible score is 100... If the total score in each individual checklist is less than 10, it means that your child most likely does not have a problem in this functional area." It does, however, apparently mean that you have a problem in the math area.

Academic Assessment Checklist
Right: 14 Left: 6

Behavior Assessment Checklist
Right: 16 Left: 3

Now it's time to go see what the professionals have to say.

Sunday, September 26, 2010

The Waiting is the Hardest Part

He had his Cognitive assessment Friday afternoon. They told me it would be 1 1/2 - 2 hours and it took 2 1/2. After all the things that were brought to my attention while filling out the paperwork, that wasn't very reassuring. Many of the items on their lists were things that I assumed were just normal for an 8-year-old boy. And I suppose they are, but not when they all occur in the same person nearly every day.

In a way it will be a relief to finally have some answers, but it's never easy to hear something is "wrong" with your child. I didn't think it was a big deal; I thought I only wanted a name so I knew the enemy I was fighting. And I do. But I also don't want to know, because what if we can't fix it? I would rather believe that the way he acts is just because he's a little boy and he'll grow out of it and everything will be okay. As we get closer, I get more nervous. Last weekend, I wasn't nervous at all, and on Sunday, without thinking as much as I should have, I asked a friend if her child was autistic. I was just trying to help her and her child and because I knew there were solutions out there, I didn't stop to think how that question would affect someone who hadn't had time to prepare for the possibility. I did apologize later, but I still feel bad for being so thoughtless. Not because of what I said, but where and when I said it. What's ironic is that now I'm the one who isn't sure about anything. It's one thing to think something may be, but to have someone impartial confirm it is a whole different thing.

Apparently there are people who think I'm this really organized, super-dedicated homeschool mom. I am organized in my own weird way. I try my best to do what's best for my children and at this point in time, I happen to believe that homeschooling is the best thing for him. But there's always part of the picture you don't see. The part where I listen to him scream at his 2-year-old brother for the 20th time that day and wonder if I can lock them in separate rooms. (They haven't been locked up yet.) The part where he argues with absolutely every word that comes out of my mouth until I want to scream myself. (Apparently the constant arguing may be part of the disorder.) The part where I want to cry in frustration when he says something, then when questioned 30 seconds later says, "I didn't say that" because he really doesn't remember. (I'm not sure where the memory thing fits in, but it's gotten dramatically worse over the past month or so.) The part where I swear that if he doesn't stop tapping on everything around him, I'm going to run away from home. (That one hasn't happened yet, either.)  Sometimes I just can't take anymore and I yell at him to stop doing something I know he has no control over. That's hard on him, me and our relationship. I'm very fortunate that he forgives, forgets, and continues to seek out ways for us to spend time together.

Mother Theresa: "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
Me: "Yeah, what she said."

Don't get me wrong; it's not all bad. We laugh, we read, we snuggle, we talk, we watch TV, we play games on facebook (he really likes Family Feud and The Price is Right). I'm just a mom like most other moms and it just seems overwhelming sometimes. The literal "bouncing off the walls", the compulsion he has to check the front door every few minutes to make sure it's locked, the constant talking, usually saying the same thing over and over, the way he has to touch everything in the house as he spins by, the noises he says he has to make. Living in his imaginary world 90% of the time and expecting everyone else to be there too, which includes believing that toys and inanimate objects think and have feelings. It doesn't sound like much here, but imagine living inside a tornado all day every day. The incessant motion and noise can get to you after a while. So at the end of this process, I want him to be okay and to able to function like other kids (and, eventually, adults). I also want our relationship to be better. And my sanity to be intact.

Monday, September 20, 2010

First Center Assessment

Today was his first Center Assessment. They do Sensory Motor skills on one day and Cognitive skills on another day. They make it fun for the kids, so even though he was *really* anxious beforehand, he had fun and was in a better frame of mind afterward. For my part, I brought home about 20 pages of paperwork to fill out before Friday. We have a meeting on Monday to discuss the results.

Friday, September 17, 2010

Visual Tests

All we got done today between schoolwork and karate class were a few visual tests. If you're wondering why I'm doing all these tests at home when I plan on having him tested professionally, the answer is that I just didn't have enough to do so I was looking for something to fill my time. Or not. Actually, the program calls for retesting every four weeks to quantify progress. I need a benchmark to see how we're doing. Also, I can't tell others if the program works (or doesn't) if I don't do it all completely.

Visual Dysfunction Checklist: 42 (scale 10-100)
Light Sensitivity Test (dilation): Right eye 7 seconds, left eye 14 seconds with sensitivity; indicates weak right-side Level 2
Fast-tracking Test: I couldn't spot any of the issues in this test Level 3
Slow-tracking Test: No fixation Level 1

His first of two testing sessions is Monday morning. I wanted to be done with my testing before that so he wouldn't know that I was testing him or what I'm looking for. I'm not sure that will happen. Our plans for the weekend changed suddenly tonight. It's not a deal-breaker, though. I can do it Sunday evening or Tuesday if I have to. His second testing session is Friday and we'll find out the results the following Monday.

So Here We Go

He's scheduled for an assessment at the Brain Balance Center on Monday, so I want to get his home eval done before then. I want the official eval for a couple of reasons. One is that he's never been diagnosed, so we don't know exactly what we're dealing with. Something along the ADHD/Asperger's line. We've never had him diagnosed because it didn't occur to me we might be dealing with Asperger's until just a few months ago. Before that, I thought it was ADHD and there was no way I was putting him on drugs, so there wasn't any point in getting a diagnosis. We homeschool, so I didn't have to worry about what to tell the teacher or school. I wasn't ignoring it, though. I was trying to convince my husband that we could lessen and maybe get rid of many of the issues if we changed his diet. I've gotten luke-warm support for that, although it's gotten a lot better recently.

The second reason is that although the book recommends an elimination diet rather than blood tests to determine food allergies and sensitivities, I already know that won't work in this house. The reason for the recommendation is, of course, cost. I'm hoping that if I go to our doctor with a good reason, she'll order the blood tests and insurance will pay at least part of the cost. That's the plan, anyway. We'll see how that goes.

Master Hemispheric Checklist
So I started part of the eval last night, a check list I could do without Jeffrey in front of me. It's supposed to help determine if we're dealing with a right-brain or left-brain deficiency. There are 200 characteristics, 100 for each side. His total was 78, with 52 right-side and 26 left-side checks. Seventy-eight falls in their moderate category. Apparently it's normal to have a little of the "other-side" issues because when one side disconnects and stops growing, it eventually starts affecting the other side as well.

Before I remembered my friends' Brain Balance recommendations, I found this website in a book. They have an experimental screening tool to evaluate the possibility of a pervasive developmental disorder. It's very helpful because it actually tells you the criteria for choosing "mild", "moderate" or "severe" instead of leaving it up to you to guess. He scored 100 on that one, which is the cut off between "This score may suggest Mild PDD" and "This score may suggest Moderate PDD."

I didn't tell him what we were doing because I didn't want him to obsess about the results or what he was doing right or wrong. He had fun and when it stopped being fun we stopped for the day. It only took about an hour, maybe a little longer. First was the mixed-dominance test. His hand, foot, ear and eye all show right-dominance, which is the way it's supposed to be. (Well, they should all be the on the same side. Doesn't have to be right.) One of the questions is "which hand used to brush teeth". I had him brush his teeth so I could see. Which resulted in a step-by-step of how he brushes his teeth...and of course his little brother became hysterical because someone was brushing their teeth and he wasn't brushing his. You won't find a toddler around with cleaner teeth. So after we brushed everyone's teeth, we moved on to the next set of tests.

Head tilt test: slightly to the left
Eye balance: right
Fixation: couldn't
Pupils: I couldn't tell a difference in them
Facial muscles: I couldn't tell a difference
Soft palate: couldn't really tell - seemed like right side (Some of these tests are hard to do at home, which is part of what I'm hoping to share here. Maybe if your child has a more severe problem, these things would be more obvious? I'm sure for a trained professional, it's easy to spot. There are some more issues with the testing I'll mention later.)
Tongue deviation: right
Standing body tilt: right
Elbow bend - right - slightly
Hand placement - left - slightly (he was trying to stand "at attention" and it was hard to get him to relax so I could see what I needed to. I knew it would be so I tried to look when he did an earlier test. That's how I got the "left" answer)
Thumb strength - right was slightly weaker, but he wouldn't/couldn't hold either up straight. He kept laying them down on top of his fists
Big toe - left
Postural Assessment: 4 left & 5 right, when according to the book, they should have all been right. The really obvious ones, like his posture, were right-side

Vestibular (Balance & Spatial Awareness) Function Checklist - 86 (scale of 10-100)
Post-Rotational Tests - Slow Spin: Spinning in both directions, while spinning, he named the correct direction, then said we stopped and started spinning the other direction. We didn't. The spins I did were at two different times. He wasn't aware of stopping for several seconds after we stopped. He wasn't dizzy, though.
Fast Spin: He had no post-spin eye movement after spinning in either direction
Vestibular Ocular Reflex: Out of 10 tries with each side, he only had one incident on each of the eyes not tracking.

Auditory Function Checklist - 52 (scale 10-100)
There were actually two auditory assessments. I only did one because the other requires a tuning fork and I don't have one. If I hadn't been so sure his right side was the problem, I would have made a better effort to get one. (I did try to borrow one, but I couldn't find one.) 
Simultaneous Sound Test - heard sound on right side first (which means the left-brain worked faster) - the difference was less than 5 seconds

I'm not sure if it's just me or if a couple of the instructions aren't quite clear. Also, the checklists at the end of each section are a little confusing because we were supposed to be checking for a "yes or no" but the item was listed with the others under "left or right". Nothing earth-shattering, but I think the book should have been checked a little more closely by someone who wasn't "in the know". Over all, though, so far it's been pretty good about sticking to layman's terms or explaining very well what the big words mean. (I'm the type of person who goes to the doctor and says, "Tell me what that means in English.")

We actually did all these on Thursday. I just couldn't get the post finished. We'll do some more - maybe even get finished - today. I have to wonder, if this works, will we lose his awesome way of thinking and looking at things. Yesterday evening, while I was taking the picture of the bike, he was on the swingset, pondering gravity. "You know, Mama, if gravity pushed away from earth instead of pulling, it would be "the push of gravity" instead of "pull of gravity". Why, yes it would.
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