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The Bee

  • Posted on August 11, 2014 at 10:00 AM

The first time I was stung, I was a little child. Four or five years old, running barefoot in the grass, picking dandelions, and I stepped on a bee. I ran home crying and my grandfather made it all better.

I hadn’t been stung again in all these years. Not once that I can remember.

Saturday night, late, I went upstairs to go to the bathroom. When I came down I sat in my chair and —ouch!— something poked me. I scratched, thinking a sliver got stuck in the pillow*. But there was something, like a little wad, in my pant leg.

I was alone, in the privacy of my den, so I reached in and took it out. It was a bee! It was alive! I flung it, stomped on it. Realized that it might have been a wasp, but it didn’t occur to me to care. It was bee in my pants!!!

How does that even happen? I can feel the little, pale hairs on my arms move. A bee couldn’t have crawled up my leg without me feeling it. It couldn’t have just landed on the chair. It was in my pants! All I can think is that it must have gotten in when I was in the bathroom and wasn’t too bothered until I sat on it. But, really, in my pants!!!

So, yes, there’s a little freak-out going on. Yes, still.

*I have an “executive’s” chair, with a wheeled bottom, a high back, arms, and built-in cushioning. I sit on this chair lotus-style, because otherwise my legs feel like they’re floating away, which makes it rather hard to concentrate on my work. When I sat on the faux-leather, this created semi-permanent callus-like lines in my ankles that would occasionally bleed. So, I got a regular chair cushion, but it was only marginally better, because the extra cushioning and fabric didn’t cover the whole chair. Just last week, I found a square pillow that’s bigger than the seat of the chair by just a little bit, so it’s a perfect fit for my lotus. The callus hasn’t gone away yet, but my chair is nice and soft and it doesn’t hurt me anymore.

But, really, a bee in my pants!!! Jeez, what’s the world coming to?

When Ben’s Fan Died

  • Posted on May 28, 2014 at 10:00 AM

When Ben’s fan died, he’d just gone upstairs to go to bed. As per usual, he turned on his fan before crawling into bed. This time, however, the fan didn’t blow. The fan didn’t whir. When Ben’s fan died…it died silently. It made a bad smell and that was all.

When Ben’s fan died, he was noticeably upset. As per usual, he stomped around in his frustration, grunting and whining. This time, however, he understood that throwing a fit wouldn’t solve his problem, so he didn’t throw a fit. When Ben’s fan died…he let go of his anger and let himself be comforted and put to bed. I hugged him and kissed him and he accepted that this was the best I could do for the moment.

When Ben’s fan died, I didn’t give up. As per usual, I saw this as an opportunity to show my son that I understood and I cared. This time, however, I couldn’t “fix it” without help. I didn’t go to the store. I placed a call. When Ben’s fan died…his grandma Nonnie provided him with a new fan to use. I drove over to my mom’s house and picked up the freshly cleaned fan and drove right back home.

When Ben’s fan died, he didn’t go without. As per usual, those who loved him understood his needs. This time he needed something that would blow and whir, so he could go to sleep. He got exactly what he needed. When Ben’s fan died…he got a new fan that blew harder and whirred louder than before. He squealed with glee and thanked his Nonnie and his mommy and went back to bed and that was all.

Sleep well, Ben. I love you.

The Cutting of Hair

  • Posted on March 10, 2014 at 10:00 AM

When we first learned about autism and sensory integration disorder, we learned (among many other things) why haircuts seemed so traumatic for the boys. Simply put, they seemed traumatic because they were traumatic.

I remember how the boys would writhe under the scissors or the buzzer (an electric hair clipper). It used to be that I would sit down and hold one of the boys on my lap, while my mom cut their hair as quickly as possible. We’d all get covered in hair, the child would cry, and it would end with us in a breathless, exhausted tumble of remonstration, remorse, and reconciliation.

Once we understood that, yes, they acted like haircuts hurt because, to them, it did! When we understood the impact of sensory integration disorder and ineffective communication skills, we changed how we did things. Mainly, we performed haircuts in short bursts and separated each burst of haircutting with intense sensory regulation strategies. The result was a little less trauma, but otherwise the same. As the boys grew older and stronger, it seemed—at first—that the only thing that really changed is that Mark was the one to get covered in hair instead of me.

Then, something miraculous happened. It started with Willy. You see, he started becoming adept at self-regulation. He gained more self-control. So, while he still put off haircuts as long as possible and continues to dislike haircuts, he became able to endure them to the point that he could sit for them himself, he could tell us when he needed a break, he could regain his own self-control, and could tell us when he was ready to come back.

Alex’s journey is this regard was a little less straightforward and isn’t as progressed, but he can also sit for haircuts by himself. He’ll let my mom know when he’s had enough. He’ll come back when he can tolerate more. He can self-direct his participation. And they can both tolerate the buzzer!

In Ben’s case, the story is a bit different. Becky, Ben’s therapist, took over the responsibility of cutting Ben’s hair. She volunteered herself and has kept it up over the years. The results are satisfactory and we trust Becky completely, so we’ve let her choose when to cut Ben’s hair, how to cut his hair, etc. So, she manages the entirety of the project. Ben still cannot tolerate the buzzer, but seeing as Becky does it all by herself—controlling the environment in which the hair is cut is one of her strategies—Ben, too, must be doing better.

When the boys were little, I despaired of ever reaching this point. I know there are parents out there who are in the midst of that despair. But things do get better. Hang in there!

Seeking Advice: Trampolines

  • Posted on February 24, 2014 at 10:00 AM

If you read this blog regularly, you know I have three boys who all have diagnoses of autism and who also all have sensory integration issues. All three boys like to jump—a lot. All three boys need to jump a lot to stay regulated. We provide them with a trampoline at home so they can jump a lot.

Unfortunately, we have yet to find a trampoline that can last longer than a month with three boys who jump a lot using it every day, several times a day. I estimate that the trampoline is subjected to somewhere between three to five hours of jumping per day in 5 to 15 minute intervals. Keep in mind that we’re talking about an indoor trampoline here. Generally, the trampolines we get are designed for occasional (2-4 times per week) bouts of exercise (30 minutes per time). They usually come with a 90-day warranty if used as indicated, but the use my boys put the trampoline to is considered abusive.

Usually, springs start popping off by the end of the first week. Either that or the tri-prong bars that connect two of the springs to both the mesh and the metal ring start snapping. We keep the old trampolines for spare parts and can usually stretch the parts for up to a month, depending on what broke with the last one and what’s breaking with this one. Sometimes other things break that aren’t interchangeable, and then the trampoline is considered unusable for anything but spare parts.

Does anyone know of any brand of indoor trampoline at any price and (almost) any size that can truly stand up to the kind of use three boys with autism will put it through? If so, please leave a brand name and (if possible) a link in the comments. Thanks!

Cumulative

  • Posted on December 5, 2012 at 5:23 PM

Life as a family coping with multiple disabilities and multiple people with disabilities often seems to revolve around the issue of cumulative effects. At least, that’s our experience.

This is true of the big issues, of course. For example, the longer Mark is depressed the harder it seems to be for him to recover from that depression and the harder it becomes for him to imagine a future point in his life when he’s not depressed. The longer Alex goes without an effective means of complex communication, the further behind his peers he gets, and the less likely he is to have anything resembling a “normal” future, which means his projected outcome is “worse than” his brothers’.

But it is also true of the small issues. For example, Ben is still having a rough time at school and we’re still at the “figuring things out” stage, so he’s accumulating stress all week long. So, the at-home strategies that have been in place and have been working are no longer enough to help him cope with the additional stress. In turn, Ben’s lack of coping results in more outbursts, particularly more outbursts targeting Alex. Alex, then, has a rougher time, more stress, and more outbursts of his own. So, Alex takes out his frustrations on others, particularly but not exclusively me. This involves pinching and poking the “trigger points” that are especially painful, which “gets a rise” out of me and makes me hurt and be grumpy. This reduces my self-control, meaning I become more snappish, and this impacts Willy, because he’s especially sensitive to snapping. Meanwhile Mark, who is the steadfast star we all orbit around, seems to get more depressed, because there’s very little he can do about all of it.

Recently, when explaining the spoons/marbles theory to a certain co-author of mine, he added a new dimension by describing it “more like spinning plates.” This shows the cumulative effect, because—after being overextended—you start each day walking on a bunch of broken plates. And I’m definitely (though only figuratively) wading through shards.

Auditory Processing

  • Posted on November 23, 2012 at 9:00 AM

What are your experiences with auditory processing? Does listening to learn work for you? If not, what do you do to compensate?

I’ve been researching ways to help Ben avoid painful auditory stimuli and ways to help him access necessary auditory stimuli, like teacher’s instructions. And I keep coming back to accommodations designed for people with hearing impairments. Are there similar accommodations designed specifically for people with listening/processing impairments?

Triggers

  • Posted on November 19, 2012 at 9:00 AM

I got a call to pick up Ben. Apparently, over the last few weeks, Ben has been pinching, hitting, and biting. It had gotten bad. He was inconsolable. I needed to pick him up and bring him home.

As soon as I entered the room I knew why.

I’d been to the classroom before and it seemed like a good fit for Ben. There was a lack of certain sensory accommodations, but I gave them recommendations on how to change that. The room was a bit isolated, which meant that it would be quieter than his previous classroom, especially since it would also have fewer students and less traffic outside.

For the first few weeks, Ben did beautifully. He made some progressed and was able to show abilities that his previous school would never have expected of him. But something had changed.

I knew what it was as soon as I entered the classroom. I could hear it. The heat had been turned on. Now, the room was full of a loud, angry-sounding buzz.

For those without sensory processing disorder, this might not seem like such a big deal. Sure, you hear it, but you don’t listen to it. Your brain recognizes the sound, determines that it is not important, and filters it out from your conscious experience of the room. Ben can’t do that and that makes all the difference in the world.

Ben hears it, he listens to it, and the sound causes him pain. Every moment of every day he’s in the classroom, he’s being harassed by a sound he cannot tolerate, but one which he cannot control. To make matters worse, he doesn’t have the words or the communication skills to explain what he’s experiencing to those who don’t share in them.

I’ve seen this time and time again. My sensory processing disorder is much milder than Ben’s, but I knew that if I had to stay in the room, the stress of that sound would cause me a headache within an hour. I can empathize with Ben, because I can understand what he’s experiencing on a personal level.

Ben can’t say he hurts. He can’t say the sound is too loud. He can’t express this with words or pictures or any other form of easily recognized communication. So, he covers his ears. If you make him take his hands off his ears to do work, then the sound hurts him. He will quickly grow frustrated and angry. His ability to cope will lessen as he’s continually exposed to the painful stimuli. He’ll act out. He’ll melt down. It’s inevitable. It’s cumulative. It wears him out and his behaviors wear out the patience and tolerance of those around him.

It’s not enough to understand the theory of sensory processing disorder. For Ben, it’s not a theory at all. It’s an experience. The pain the sound causes is very real. That it “shouldn’t” hurt doesn’t matter. It does hurt. That’s all Ben knows. But he can’t say that. So, I have to say it for him. I have to teach others to empathize with the way Ben experiences the world. That sound is the trigger that will set Ben off like a bullet from a gun. Without intervention, that bullet is going to hit a powder keg and explode.

In fact, metaphorically speaking, that’s just what happened.