Wednesday, August 3, 2011

The challenges of homeschooling a child with autism, part 1



Little Bean's Challenge #1: My senses are on crack.

Ha ha. Not really. But sometimes it does seem that way. Little Bean does not have a diagnosis of Sensory Processing Disorder or Sensory Integration Disorder, or any other disorder other than Autism for that matter. But he does present sensory issues. Some of his senses work too well, and others don't seem to work at all.

We have five basic senses that everyone knows about--sight, hearing, touch, taste and smell. In occupational therapy, you get to learn about another sense that everyone has, and it's called our vestibular sense. Your vestibular sense is a hard one to figure out, but suffice it to say that it has a lot to do with balance and feeling balanced.

Little Bean's vestibular sense doesn't work all that great; it's under-responsive. So many times when he is sitting down doing seat work, all of the sudden, he'll just fall out of the chair. Literally fall out and hit the ground hard. I never understood this pre-diagnosis. I learned that if I try to make him sit, he'll eventually take a dive. He does seem to understand that something isn't right with this sense, because I often catch him trying to correct it. At the table he will almost always stand, rather than sit while he works. Or, he'll "perch" on the edge of the chair, one foot planted on the ground, one little bun on the chair, and one off (this almost always leads to falls too). If we are on the floor, he'll lean all the way forward and listen with his head touching the ground. Or he'll rock forward and back while he listens, maybe trying to orient himself. Sometimes he'll lay with his head upside down on the couch and his feet in the air. Or he'll listen as he spins in circles. At the dinner table, I insist that he sit....so the crumbs fall on the plate and not the floor. Now that I write that, standing would work just as well there...hmmm, something to think about. But he can't bear to sit with his feet dangling. So he has a bathroom stool under the table to prop his feet up.

Hearing is another sense that seems to be out of whack for my son. I don't quite understand whether he is under-responsive or over-responsive or both. I'm inclined to say both. First, he hears everything. Buzzing lights, trains that are 10 miles away, the neighbor parking their car in the drive, a pen clicking to open, paper rustling, a page turning, a whisper, a door squeaking, even Miss O breathing. He hears it all, and he has no apparent ability to block it out or separate the important sounds from the unimportant ones. He cannot concentrate very well if he hears any noise that irritates him, though he tries hard.

On the other hand, Little Bean has a nickname in our house--he's our human music box. It's true. He is never quiet. Never. And it's hardly ever words that he is speaking; it's noises. He learned to whistle sort of a quasi-whistle-bird-call one day a few months ago. He never stopped. Literally sun up to sun down he whistled. Before that is was gulping. He would gulp all day long. When he was a toddler, it was humming. Constant humming. Now we have moved on to sort of a glottal-stop-back-of-the-throat sniffing sound. His noises do not bother him, though they do drive the rest of us batty from time to time. In fact, his noises comfort him greatly. We try our very best to ignore them as much as possible because we know how much input he gets from them.

Smelling and tasting are the least affected of his senses (Miss O on the other hand, lol, she has a super sniffer for sure!). I want to touch on his challenges with touch (no pun intended) and sight before I end. First I want to say, our issues with touch have improved greatly, so much, since starting the gluten free, casein free diet. I am so pleased each new day when he not only willingly accepts a hug now, but seeks hugs and asks for foot rubs. Such a huge difference. Really, like night and day.

We do still have a no-touch rule when he is upset. When he is agitated, which happens often during school time, he can't stand, I mean physically can't stand to be touched. He just flips out if you do. If he is hurt and crying, the last thing he wants is a comforting hug. I remember asking him once when he was in tears from hurting himself if he wanted a hug. He gave an emphatic, "No! Of course not! Why would I want a hug!!?" I remember pre-diagnosis we noticed that when we tucked him in at night, he'd pull back from our hugs and give sort of an air hug instead. If we touched his shoulder or back, he'd arch away as if in pain. I don't know what touch feels like to him, but I do know that before our diet, it definitely wasn't a pleasant experience.

And sight. Sight is a big one. Little Bean is a detail boy. He sees everything. I remember when he was in K and I pulled out our All About Spelling tiles. An "s" is one of those letters that is the same whether it's right side up or upside down. Not to Little Bean. The All About Spelling font is apparently a little bit different on the top side than on the bottom. I remember him pausing between his spelling words to turn that upside down tile. As much as he notices that kind of detail, he also notices all the other little details in the room. The stray toy on the carpet, the out of place hair hanging down from my pony tail, the cushion that was put on upside down on the couch. The shadow of the mail man outside. A mosquito flying by the window. The movement of the sun behind a cloud, and the shadow that casts in the room. The movement if Miss O as she puts a bead on a string. It's hard for him. Everything stops when something outside of himself moves or is out of place.

So what? What do these things have to do with making homeschooling him challenging? Well, sensory problems are only a small fraction of what makes things difficult, it's the compilation of all the different things that brings forth daily challenges.

But imagine this: You are teaching a spelling lesson at the dining room table. The student cannot sit still. He is standing, then he's spinning, then he's sitting (because you told him to), then he's laying, then he's rocking, then he's perching, and once again you've told him to sit and pay attention. He is doing his best to pay attention by stimulating his vestibular sense which then comforts him, making him more able to pay attention. But you don't see that. You just see this hyperactive kid who can't possibly be listening through so much movement and you get frustrated. Add to this scenario a constant whistle. You must talk over the whistle. If you ask the whistle to stop, it will, but only until he stops consciously thinking about not whistling (during which time he cannot think about what you are trying to teach him because he is thinking about not whistling). Now add in a little sister. And a dishwasher whirring, and the jeans clanking in the dryer. And the neighbor pulling his trash cans in. And the sound of rain on the carport. He can't hear you over all the noise. But a home must be run, and you can't magically stop the noise. He doesn't seem to be paying attention, so you tap him on the knee or shoulder to get his attention. Bad idea. He can't stand to be touched, especially an unanticipated touch. He flips out.

So it is challenging. Add in the other issues I'm going to share later this month, and you'll see that this is only the tip of the iceberg, for him and for me. It only gets harder from here.

We learned about some neat tools in occupational therapy. We have fidgets, which are little toys that the child can handle and hopefully fulfill a bit of a sensory need while doing so and be able to sit longer. We have a weighted vest too. It's a weighted, compression vest, so it gives both a sense of grounding and a deep pressure. It's supposed to calm the child. We let him sit on an balancing cushion when he must do seat work. We use instrumental music to block out the distracting sounds (he loves this!). But the biggest thing is learning to recognize that his behaviors sometimes are happening because he IS trying to pay attention and must do these things in order to do so. So I have to learn to ignore the behavior, as challenging as that is. I'm still learning. I was never a hyper kid. I could sit still and listen in class. So it's hard for me to expect something different from Little Bean. But I have to. I have to learn to, otherwise, I just end up frustrated, and so does he.

More to come in Part 2 of this series....

post signature

8 comments:

Annette W. said...

Wow. That's quite a peek into Little Bean's sensory issues.

greyfen said...

That totally sounds SPD to me; but I've also read that "Gifted" children frequently have hyperactive senses.

Jennifer said...

C--SPD and Autism are often co-morbid (dxd together). E had an eval for it, and according to Kaiser did not have significant enough issues to require occupational therapy. Part of that is that a 30 minute eval isn't enough to decide that, so it wasn't all that accurate...but he does have sensory problems, which I'll go out on a limb and say almost always occur along with Autism, even if it's not dx'd as SPD. BTW, we were also told that SPD is not an official diagnosis yet. Although Sensory Integration Disorder is. Sometimes it's hard to distinguish between the two as well.

Natasha said...

I really feel for you...it requires a tremendous amount of patience to teach with all that going on. I get just a little of that with Nathan, who has no attention span whatsoever and wants to constantly move around when I'm trying to teach him something...it drives me crazy, even in small amounts. So I can imagine how hard it's got to be with the variety of things you mentioned. I was wondering if there are any parts of the diagnosis (or sensory issues) that get better with age? I've never seen an adult doing a lot of the things you mention, so I was just wondering if some of it improves just due to age? Or is it just because I don't know adults with these issues?

Angela said...

*It was so interesting reading this post. It was like a window into my life. I have been taking c to OT for 2 months now, and she did say SID was more a co-morbid for him. But in the whole 2 months we have been going, she has never mentioned vestibular sense. I know c doesn't like to sit much, and does the flipping and spinning and rocking while trying to pay attention. SO I'm sure he has that issue. But more interesting, and I mentioned it to my husband after reading this post, is that my DD "falls out of chairs like that. Or, she trips over nothing and falls. I have even seen her stand there talking to me, and then all of a sudden she falls hard. I can't tell you the amout of times I tell her to sit in her seat, she always gets upset when I do. I can't wait to talk to OT about this.

Aspiring Earth Mama said...

Extremely interesting! He's so lucky to have such an informed mama!

greyfen said...

SPD is "supposed" to get it's own diagnosis code in 2012

Tabitha said...

I learned something new today. So glad I found this archive. I have 2 sons on the spectrum, and they are both extremely different. One has earned his GED and is not schooling anymore. The other is beginning, at 12, to manifest more behaviors - or maybe I'm just finally able to notice them more. (My 20 year old was extremely violent and aggressive in his younger days - before medications worked to help control him.) I see now that J's inability to sit still may be a coping mechanism. He's extremely bright, but drives me CRAZY with his constant motion. Thank you for sharing a peek into your world.

Related Posts with Thumbnails