"Look At Me"

"Look At Me"
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Tuesday, August 26, 2014

Autism, Hypotonia, and Sports

My oldest son (Tyler) wrestles. He is one of those rare kids that likes to go to practices, but does not like to compete. I'll explain why in a minute.

I have been struggling with whether or not to write this post for a while now. It's been swirling around in my brain, trying to find its way out.

As most of you know, Tyler was diagnosed with high-functioning autism (Asperger's) back in February. I don't talk about him very much, because he's a self-conscious kid. He's sensitive and serious and doesn't like his picture taken as much. I try to respect that.

Well, as I mentioned above, Tyler wrestles. He started in kindergarten and has wrestled in the local school program the last 3 years. This past year (I think it was in March?) there was an invitational meet against some local teams.  Before the meet even began, Tyler was extremely nervous. I'm not sure where his anxiety comes from. Is it a fear of failure? Or is it more than that? Is it the crowds? The noise? The lights? Being the center of attention? His self-esteem has never been the greatest either--even though I try as hard as I can to build him up.

I told Tyler before the meet began that I didn't care if he won or lost his matches--that I was just proud of him for going out there. I told him to try his hardest and he'd do fine. He was still overwhelmed with anxiety. I could tell he did not want to be there.

Well, Tyler got beat. Actually, he got slaughtered. (Just telling it like it is.) The kids he competed against were fast. They were strong. And they were intimidating. I couldn't help but think, "Shouldn't Tyler be doing better than this by now? He's been wrestling for 3 years."

Tyler knew most of the moves, but he thought too much. Rather than attacking, he hesitated. He'd wait a couple of seconds and let his opponent strike first. And then he was on the floor. Once he was on his back, Tyler didn't even struggle. He just gave up. He didn't know how to fight back. Or maybe he didn't have the strength? I didn't know. It was almost painful to watch. Luckily, he got a medal anyway for participating. That helped.

I've been doing a lot of research on autism and hypotonia, or low muscle tone (sometimes referred to as "floppiness". It is one of 7 characteristic traits of autism. (The other 6 being echolalia, hypersensitivity, self-stimulatory behavior, Pica, hyperlexia, and narrow interests.)

Both of my kids have hypotonia. It's not uncommon. 30% of people with autism have low muscle tone. (That's why they usually go to OT or PT or both.) They usually have weak core muscles, poor posture, and may appear clumsy.

Hypotonia usually goes hand-in-hand with hypermobile joints--loose or lax joints.  When someone has hypermobile joints, they have joints in which the connective tissue structures that hold the body together have more give (are more easily stretched) than usual. (Does that make sense? I'll put it in more simple terms. My kids have the ability to move their limbs into awkward positions. For example, Derek sits on the ground with his legs in a W-shape. He does this with ease, without thinking about it. We had to teach him how to sit cross-legged.) Their muscles have to work harder than usual to do things such as keep a good posture and/or move.

People with hypermobile joints can:

* Bend their fingers back to 90 degrees
I had trouble getting a picture of it.  His fingers actually bend more than this.  But you get the drift. Creepy.

* Bend their wrist so that the thumb touches the forearm

* When standing straight, knees and elbows appear to bend backwards
Ignore my messy house.

Hypotonia and hypermobile joints can make children seem uncoordinated and clumsy. They may have an "unusual gait." It may affect their speech, pencil grip, and hand writing (the handwriting thing is actually what clued me in that something was "wrong" with Tyler--his handwriting is atrocious! And even with OT and practice, it remains terrible.) They may have trouble sitting upright and working at a table--they may tend to sit with their back rounded, they may put an elbow on the table and rest their head on their hand, and they may tend to fidget in their seats. They may also tire very quickly (Tyler gets tired walking around Walmart with me. He complains that his legs hurt. I remember specifically about it a few years ago.) They may be good at things that involve short bursts of energy, but have difficulty with things that require endurance. They cannot hang on monkey bars and do not like climbing on jungle gyms because their arm strength is poor. They often sit in a W-position rather than a cross-legged position.

Back to Tyler.

This summer, I put him in a pretty intense wrestling program in a town 30 minutes away. He was mad as a hornet the first week. He didn't want to do it at all. It was 3 days a week, and averaged an hour and a half each practice. (FYI, I told him he had to go the first week, just to try it, and if he didn't like it, we'd talk. I wanted him to at least give it a shot. This kid hates change with a fire of a thousand suns. He ended up liking it. Hah!) They did more than just wrestle, though. The kids jumped rope, ran through tires, pushed heavy tires through sand, ran sprints, stretched, and did push-ups and such. They also learned wrestling moves and practiced with their teammates. He made a few friends. He learned a lot about teamwork. His coach was amazing and helped him build some self-confidence. I figured it was like OT--only more fun.

Wrestling didn't "cure" Tyler's hypotonia. It never goes away. But the weak muscles can be strengthened through training. And that's just what this summer was all about. Tyler still has trouble with certain things. I noticed that when it came to jumping rope, he never quite got the hang of jumping with both feet at the same time, even though we practiced at home. Push-ups were extremely difficult for him. Climbing the rope? Hahahaha. I don't know if that will ever happen. But he definitely got stronger. And stretches? Those seemed pretty easy. He could do the bridge easily and he never seemed to have that much trouble when he was put into strange positions while wrestling. (That has to do with the joint hypermobility more than training, but still...there's a silver lining to most things, right?)
Tyler in a VERY strange position while wrestling.  He wasn't fazed at all.

He was still a little slower to respond to commands than the other kids. And he had a tendency to want to give up when another kid was winning, but with a really, really good coach encouraging him and telling him exactly what he needed to do all summer long, Tyler improved tremendously. I was actually shocked by how much better he got.

And then I was crushed. There was a meet last Saturday. And Tyler refused to go. I brought it up several times. Each time resulted in tears.  And he threatened to quit wrestling altogether if I made him go.

I could have forced him.

I really wanted to see how much better he'd gotten. More than that, I wanted him to see it too.

But there is a fine line between pushing your kid so hard that they end up hating something, and just letting them doing something because they love it.

I didn't want to be one of those parents.

I don't know exactly where that line is, but I didn't want to cross it. Tyler is 8. He has (hopefully) a number of years left to wrestle. I was scared that if I pushed him to compete in this one meet, he'd want to quit wrestling forever, and wrestling is so good for him, physically, mentally, and emotionally, that I can't allow one meet to ruin that. I have to remember that he's a kid--a kid with a lot of issues that I never had to deal with.

And amazingly, this kid of mine is keeping up with typical kids. He may not ever win state, but he's right there with the other kids. He's putting in the time and the work and earning the respect of his teammates. He's sweating and hurting and bleeding, just like the rest of them. Considering most kids like him refuse to participate in activities they think will be too difficult? He's doing great just by wrestling at all. I'm pretty damn proud. Meets? They'll come in time. I know it. I believe in him.

Wednesday, August 13, 2014

Rattlesnakes, Rainbows, and Other Ramblings

Last weekend we went to the lake for vacation.

Only, as some of you know, autism never really goes on vacation.

So, the trip was fun, and parts of it were relaxing (sort of), but I would never compare it to a vacation to say...the Bahamas (without kids, of course).  Ohh, what I wouldn't do to be able to doze on the beach with a cocktail in hand and not have to worry about the kids drowning or rattlesnakes...

Yes, I said rattlesnakes.


We got to Lake McConaughy on Thursday afternoon.  We stay at a house just a short ATV drive away from the beach while we are there.  So we unloaded some supplies and our suitcases and headed straight down to the beach.  Immediately, the people that were camped next to us said they had to show us something.  So we sauntered over.  And sitting directly on top of a grill was a beheaded rattlesnake. My stomach flipped. Evidently it had been hiding underneath some of their supplies and when they went to get something, they heard the tail rattle and barely escaped a bite from a venomous snake. *shudder*

I am not ashamed to admit that I was on the look out for snakes for the rest of the weekend.
Right side of the rainbow.

The next day was not overly eventful.  Except there was a storm or two.  And Derek freaked out and looked everywhere for the "crazy tornado" that did not exist. (He's slightly obsessed with weather at the moment.)  

But we saw a rainbow, so that was cool.  We also saw some toads, butterflies, sea gulls, and dragonflies. 

(Thankfully, we didn't see any more rattlesnakes.)
Left side of the rainbow.  (and Tyler)
Blue dragonfly
Autism came to the lake too. Both boys stimmed. Derek scripted. Tyler obsessively talked about superheroes. Both kids hated having sunscreen put on them. Tyler complained about the flies biting him. Derek ate a minimal amount of food (his usual Goldfish, pretzels, and dry cereal). Both kids slept terribly. Derek had a meltdown one day that resulted in a 3 hour nap (he was that overstimulated).

No big deal, right?
Toads hiding from the sun.

Except the moment we got home, I ended up with the stomach flu.  I was running to the toilet every 10 minutes for close to 24 hours.  So instead of being just tired, I was exhausted.  Actually, that doesn't even begin to describe it.  I had cleaning to do, kids to take care of, and I could barely crawl from the bathroom to my bed.  I let my kids play the iPad and watch tv and eat whatever they wanted ALL DAY LONG and I don't even care.  I was too sick to actually sleep (I doubt Derek would have let me anyhow--and even if he did, I can only imagine the damage he might have caused), and Derek laughed at me when he saw me vomit, but at least the three of us survived (somehow). I honestly think that the hardest part about being a parent is having to be a parent when you are ill.  

I'm better now.  School starts in a week and I'm doing everything in my power to get stuff done before school starts--hair cuts, doctor appointments, etc.  

What I really want to do is take a nap...

Next week, I suppose.  ;)

Tyler getting thrown into the air by his uncle.  Derek watching (and floating).

Derek finally got his campfire on the last day.

Derek sitting by himself on the boat.  Chilling.

My tow-head.
"I make fire!"