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Compulsory Celebration

  • Posted on August 2, 2013 at 10:00 AM

By the time you read this, our monthly stipend will have arrived. The boys will have their routines back and we’ll be able to get some of the things they’ve been missing for them. Our celebration won’t be extravagant, because we have to be careful with what’s coming in to make it last, but there’s definitely some celebrating going on here!

Appointment for Worry

  • Posted on July 17, 2013 at 10:00 AM

After Willy had his first major seizure, the one we knew was a seizure, I took him to a neurologist up in Madison. After discussing our family history, I took Alex to the neurologist, too. The neurologist had enough reason for concern to recommend we conducted some additional tests, including a second MRI. At Willy’s last appointment, we canceled Alex’s appointment to discuss the results of his MRI, because the doctor had peeked at the results and declared all was well.

Then, the nurse called and uncanceled the appointment.

Naturally, I was concerned. Was all not well after all? Actually, those who know me better know that I was, underneath a front of my own version of normal, seething with anxiety.

We waited months, of course. We arrived in a rush, of course. Then, to my surprise, it turned out our appointment was never actually rescheduled. It took some persistence with the receptionist, but finally she called the nurse and the nurse talked to the doctor and the doctor, being the conscientious man that he is, agreed to see us.

We met with the nurse, who asked me leading questions. We met with the medical student, who asked more leading questions. I got the impression that we’d missed something, because all those questions were geared toward revealing the changes in Alex’s behaviors that we’d seen.

But, we hadn’t seen any. Alex seemed like Alex, which is far from normal, but it is his own version of normal, so I wasn’t concerned about that! Oh no, what had I missed? What hadn’t I seen? Had I been too busy to notice that something was really wrong with my child?

Then, the doctor came in. I explained why I’m here. He was obviously relieved. He explained what had happened. I was immediately relieved.

The gist of it is this: The nurse was NOT supposed to uncancel our appointment; she was supposed to confirm that the doctor had compared MRI results and verified that there was no significant change to the area of concern and that there was therefore no cause for concern. In short, Alex didn’t need to come back unless we observed significant, worrisome alterations in his behavior. So, obviously, when we showed up for an appointment that didn’t exist, the doctor thought we had observed significant, worrisome alterations in Alex’s behavior.

All that worrying for nothing but a case of the miscommunications! At least it ended with relief.

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!