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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.

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!

Is Flexibility Enough?

  • Posted on June 18, 2012 at 8:00 AM

Not so long ago, Alex got new glasses.  Then, they broke and I was too busy to get them fixed until right before his appointment.  The fix lasted long enough for the eye appointment, and Alex seemed disappointed and upset when they broke again.

The thing of it is, the glasses proved two things.  First, the glasses work, Alex can see better, and he will wear them, though we’re only up to 30 – 50% of the time, depending on the day.  Second, they help with Alex’s wandering eye issue—and the exam today proved that Alex’s worst eye isn’t “shut off” the way the doctor feared it might be.  He still receives visual stimuli from both eyes.

So, the glasses need to be replaced, which the insurance company will pay for.  But Alex needs something a bit less breakable for it to work.  Ideally, something less scratchable, too, but the lady at the optical center was convinced that nothing would really help, considering Alex actually chewed on the lens.  (She’s got a point.)  But still, he needs a frame (the part that broke) that’s a bit more durable.  Alex simply is not gentle with things.

Alex’s eye doctor, who spends far more time with him than the people at the optical center, had a suggestion.  Miraflex produces soft frames they describe as “Flexible and Safe.”  These frames are specifically marketed for babies, young children, and children with special needs.  They also have “Terry Flex” frames that are hard frames without metal hinges, but are also breakable.  We’re looking into the soft frames to start Alex off on and see if they help.  Of course, it’s possible he’ll just chew the frame to bits.  But we’ve got to try.

Unfortunately, the insurance company won’t pay for the unbreakable frames.  We’ll get the replacement pair and hope they last long enough for us to pay out of pocket for the unbreakable frames.  Keeping our fingers crossed!

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.