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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