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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.

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!

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.

Sweet Relief

  • Posted on August 31, 2012 at 8:00 AM

He knew what it was as soon as he saw it. He knew it was his. It was even red!

As some of you may know, Alex is a sensitive little guy. By sensitive, I mean he’s sensitive to sensory stimulation most people can process with ease. It’s hard to pin him down to hypo- or hyper-sensitive. He’s seems to vacillate between the two at his own discretion. But one thing is consistent, he’s extra-sensitive to sound. Everyday sounds are too much for him to bear. One way he copes is by producing his own sound-canceling noises at high volumes, which is hard on everyone else.

We recently had a home visit with the autism coordinator in charge of the boys’ waiver funds. (Wisconsin’s solution to the financial “burden” of providing services to children with autism was to create an autism waiver that provides a limited number of years of intensive in-home therapy, followed by a slightly less expensive bundle of money managed by a social worker for services and equipment to help the family develop a post-intensive program tailored to their child(ren). All three of my boys have “gone post,” meaning they’ve graduated from the intensive in-home whether they’re ready or not.) Her primary purpose was to discuss how Willy’s new diagnosis of epilepsy changes things. Her secondary purpose was to bring a “gift” for Alex.

Like I said, he knew what it was as soon as he saw it. He knew it was his. It was a red pair of sound-dampening headphones.

Alex took the offering and put it on right away. He smiled. Not the over-anxious smile of happy over-stimulation (his norm throughout the summer), but a contented smile of peace. He even wore his glasses for a significantly longer duration when paired with the headphones (which helped keep the glasses on without the strap).

I could see it on his face. This was what he’d been missing since school had ended. This was what he needed. Sweet relief! A break from the overwhelming sound of life going on around him. Quiet. Hey, I can relate, that’s one of the reasons I stay up so late!

Discovering SID

  • Posted on October 10, 2009 at 12:00 PM

The Occupational Therapist for the Birth to Three program balanced a little, two-and-a-half-year old Willy on a giant, red ball.  The Speech and Language Pathologist tried in vain to get the toothbrush in Willy’s mouth.  I sat back, absorbing their various strategies and tactics, trying to determine how to use what I was learning at home.

“He’s not going to open,” the speech therapist said.

“Can you really blame him,” I asked, a little bemused.  “Brushing your teeth hurts, and it’s not like he understands how important it is so that he’ll do it anyway.”

They looked at me.  I blushed, feeling like I said something wrong.  Was a parent not supposed to admit that brushing one’s teeth hurt in front of a child?

Then, the OT said the words that changed everything.  “It’s not supposed to hurt.”

Startled, I jerked a little.  “Of course it hurts.”

“Are you talking about cavities,” the speech therapist asked.

“No.  Well, yes, that hurts, too.  But I’m talking about the gums.  Brushing your teeth hurts the gums.”

Their heads tilted in different directions.

“Maybe you’re brushing too hard,” the speech therapist said.

The OT shook her head.  “SID,” she said, a little sad and a little curious.

I felt the muscle in my forehead scrunch tight.  “Brushing your teeth doesn’t hurt?”

They shook their heads.  My tense muscles suddenly deflated, bringing posture to my attention.  My torso was all squishy again.

“Okay, so what’s SID?”

When my little boy was born I couldn’t have imagined that through him, and his brothers, I would learn how to regulate my own body.  It never occurred to me that brushing one’s teeth wasn’t supposed to hurt or certain products could reduce the discomfort.  It never occurred to me that other people couldn’t feel individual strands of hair shifted by the “breeze” created by a door opening and shutting behind them.  It never occurred to me that the sound a fire alarm makes doesn’t shatter other peoples’ thoughts; no, my panic was always attributed (by me and others) to our house burning down when I was little.  I didn’t have low muscle tone as a child; I was weak, scrawny, and had bad posture.  Hundreds of little differences, and I would never have known but for my children.