Sunday, March 26, 2017

I Feel Awesome

Last Friday, Kyra and I had the opportunity to converse with a group of designers and researchers from California State University working on the concept that people with special conditions (i.e. “disabilities”) more often than not possess abilities that “normal” people don’t have.

For example, it is well-documented that blind people often develop superior hearing and tactile sensitivity, and people on the autism spectrum are often able to hyper-focus and solve problems with enhanced speed, creativity, and accuracy.

These researchers and designers postulate that when we understand, expect, and encourage these special abilities, people that have previously been denied meaningful education or work because of a glaring “disability” suddenly become economically valuable in the eyes of a school or business.

It’s a win-win situation long overdue.

Kyra and I had so much fun answering questions about Kyra’s talents, gifts, and interests, and learning about the projects and research the group was working on. (Once I figured out how the “zoom” video-conferencing thingy worked… )  The discussion gave me the encouragement and hope I needed: That people with special conditions such as Kyra’s can dream their biggest dreams for their future, and make those dreams come true.

As Kyra ages out of child-related agencies, services, and opportunities, we are finding that adults with complex conditions such as hers are expected to be shuffled off to a nursing facility, and left to endure days filled with television and the occasional visit from a high school group looking for community service points.

That is not acceptable.

So, I’ve been worrying and asking and calling and digging, trying to find out, “What do people do all day, and how can Kyra be part of it?”

And like a gift from above, I was invited to talk with some wonderful people at California State University that are asking this same question, and working toward a solution.

After our zoom-conference conversation, while Kyra was snacking on applesauce and peanut butter, I asked her to tell me what she thought about we had talked about that afternoon. Using her Tobii-Dynavox eye-gaze device, Kyra said, “I feel proud. I feel awesome.”

Sara & Kyra

Tuesday, June 30, 2015

A Dozen Shots in the Arm

Shopping therapy
Kyra has endured Botox injections every 3-4 months for the past 5 years, for the purpose of temporarily relieving the spasticity and dystonia that make simple movements so hard for her.  While intentional movement is always extremely challenging, even passive movement of her arms and legs is difficult, and sometimes painful without Botox.  For Kyra, each visit to the Botox clinic involves somewhere between 12 and 20 injections in her shoulders, biceps, forearms, and hamstrings.

Today, she had 14 shots.

Kyra rarely makes any objection to the injections, although today was a bit more difficult than it has been in the past.  Then again, Kyra hardly makes any objection to any medical procedure that’s required of her, as long as the procedure is clearly explained to her step-by-step, and she’s allowed to watch the doctors, nurses, and techs that are attending her. However, Kyra’s been having some generalized, unexplained pain in the past few months, and today’s injections were more painful than before.  Her doctor was visibly moved by the change in her behavior, and had the nurse double-check the needle size before continuing with the injections. We noted that Kyra has had a slight fever after the last couple of Botox sessions, and the doctor said that she may be developing antibodies to this particular type of Botox, which would make the injections less effective.  So, if these injections don’t have a good result in spasticity reduction, we may have to look for a different solution in the future.

Since every good job done should have a reward, Kyra’s reward for today was lunch and shopping therapy with Grandma Joan and mom.  Kyra was shopping for an outfit for her cousin Eric’s wedding later this summer, and Grandma and I were along for the ride.

The Napping House
After shopping in just one store, Kyra was thoroughly worn out, no longer smiling, forehead puckering, ready for a rest in her dark, quiet bedroom.  So we went home, and soon Kyra was tucked into bed with two cats curled up behind her knees, a dog stretched out at the end of her bed, and a puppy chewing empty water bottles in the doorway. Furry angels keeping watch.

Peace to all.

* p.s. Looking for a great picture book? We highly recommend "The Napping House" by Audrey & Don Wood.

* Watch a video of the book here.

Saturday, March 14, 2015

All Fall Down

We all fall down.  We might trip over a crack in the sidewalk.  We might miss a step while carrying the laundry to the basement.  We might fall off a curb while walking and texting.  We might act or speak in a manner that slice right into someone’s heart.  We all fall down.  The question is whether we can get back up.  And whether we have a backup plan if we don’t.

I was reminded of the importance of backup plans a few weeks ago.  The weather in Iowa was stubbornly holding on to winter, but Kyra and our backyard birds were thinking it should be Spring.  So, Kyra and I spent the afternoon cutting and gluing and sewing and creating a milk jug bird feeder.  A few hours later, the feeder was host to our first chickadees, juncos, sparrows, and cardinals of the season.