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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

Labels

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.
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