Sensory? Yes please!

Have you ever met a kid who could hurt themselves pretty bad and then act like nothing’s wrong? Well, meet Kamp. He has an amazing pain tolerence! But at the same time, if you take him into Express (the department store) – where they have bright colors and loud music – he will run out screaming bloody murder with his hands over his ears.

Why?

Kamp has sensory issues, lots of kids with autism do. Even people without autism suffer from sensory problems. My oldest brother experiences REAL pain whenever he hears aluminum foil being crumpled or the touch of styrofoam. I used to think that Kamp’s pain tolerence was pretty great until we were getting ready for church one Sunday morning. Kamp went into the bathroom and climbed up on the counter while my hair straightener was plugged-in to heat up. I heard him yell and ran in as he was trying to get down. I helped him down, gave him a bit of comfort, and in no time whatever was bothering him had passed. He ran out of the room and began running around acting silly. It wasn’t until we got to church and he was standing up on our bench – in his little church shorts – that we noticed he had a 2nd degree burn on his leg. It made me physically ill that he could have something on his body like that and I would have no idea. As I have learned more about sensory, I have read about children who’ve had broken bones and their parents had no idea – for DAYS sometimes.  Kamp’s high pain tolerence sounds pretty cool, but to be honest, it just scares me to death.

On the other end, where he has a high tolerance for pain, he is VERY sensitive to light and sound. At church there are florecent lights everywhere and Kamp is constantly trying to turn off the lights, which really helps the kids stay reverent. He does this because he can see the constant flicker of the lights. Often, flickers that “normal” people don’t notice until the bulb is about to go out. We also suspect he can hear the slight hum, again, something most of us don’t hear. He hates when the organ at church is turned on and can’t stand stores that have bright colors. He trys to leave, or just screams until we take him out. When he is bombarded by these things, he goes into sensory overload and – more often than not – it usually ends up in a melt down. He feels REAL physical pain; something I’m just beginning to understand; it must be horrible to have to fight these things every day of his life.

How can we help him?

Through this journey we have learned a lot about this issue and how the brain and nervous system work together. For example, imagine you’re standing in a dark room. Without touching any part of your body, identify where your arms are in relation to your head and where you’re legs are in relation to your torso. You know where your different body parts are in reference to where your head is in space, because your nervous system tells your brain. It’s called proprioception. Kamp’s brain doesn’t always tell him where his body is in space. However, by applying pressure to certain points on his body, it helps force his nervous system to tell his brain so he can feel “normal” again. When he has a major melt down I have to resort to laying on top of him in an effort to apply enough pressure to his body. I usually sing his favorite song to help him focus and come back from where ever he goes in his head.

When some kids start to feel off, a lot of times they’ll figure out ways of getting stimulation on their own; sometimes you’ll notice they’ll spin in a circle or flap their arms. And sometimes – little  boys – have a “natural way” off achieving the sensation they are searching for. And boy has Kamp discovered the “natural way.”

In the beginning he used to use trees, poles,  table legs, etc. Whatever it was, he would sit down, wrap his legs around it and squeeze! Then, he  discovered  human arms worked just as well. And lucky for him, everyone has at least one. It’s incredibly embarrassing. It’s like I’m taking my untrained dog with me wherever I go.

The best story, though, has to be when Kamp “mounted” our good friend (we’ll call him Chris). Poor Chris – who isn’t exactly the hugging type – looked so uncomfortable trying to stop him. But not knowing what to do, he looked to us for a little help but we were too busy laughing.  Kamp eventually stopped and we joked that Chris would never have us over again.

We are trying really hard to stop THAT kind of “stimulation.” It’s not helpful and obviously VERY socially inappropriate. If you do ever invite us over, you’d better keep a rolled up newspaper nearby (just in case).

And that my friends, is why he has earned the nickname “Puppy!”

You say it’s your birthday? It’s Kamp’s birthday too, yeah!

This Sunday my “Kampy” turns five. I can’t believe he’s already five and starting kindergarten. My, how time flies! I have been thinking about this birthday for awhile. Wrapping my head around the fact that I have a little guy who is about to start school and STILL doesn’t speak is difficult.

When you have a baby you can’t help but imagine what their future holds and all the things you want for them. It seems like every time Kamp’s birthday comes around I start thinking about how the older he gets, and the further behind he falls, the less likely those dreams will ever happen for him; sometimes it’s hard letting go.

There are days – bad days – when I find myself sitting alone imagining what our life would be like if Kampbell didn’t have autism. What if he could talk to me and tell me all the things that are on his mind? The tears inevitably start Kampflowing and I find myself mourning once again – for all the dreams I had for him when we first met.

We usually do a “friend” party when our kids turn five. We started discussing Kamp’s b-day and thought, “Who should we invite?” He doesn’t really have any friends, and as much as I would like to think he doesn’t care, I’m not sure that’s true. I have watched him try – in his own way – to interact with other children and FAIL miserably. After a failed attempt, he retreats and goes back into his own little world. I desperately want him to tell me how that makes him feel, but he can’t – and my heart breaks for him.

As I sit imagining him without autism – if I were being completely honest with myself – I’d have to  imagine a COMPLETELY different person. A big part of what makes Kamp, Kamp is his autism. The way he thinks and views the world – I love it!  It’s honest and clear. He can see things without the blinders that many of us put on and accept.

I realize that all this is a process and the mourning comes a little at a time and continues as he gets older. I love him more fiercely than I could’ve ever thought possible. He may not have kids his age that he can call a friend but he will ALWAYS have a friend in Jesse, Hadley, Max and me.

To quote Kamp’s favorite song, ” Some other folks might be a little bit smarter than I am, bigger and stronger, too. But none of them will EVER love you the way I do. IT’S ME AND YOU BOY!! And as the years go by, our friendship will never die. You’re gonna see it’s our destiny. You gotta friend in me.”

So, Happy Birthday Puppy!!! We love you with all our hearts!