Impossible Things
Doctors and teachers and therapists, they can be a great many things, but they’re generally not very skilled prognosticators. To be fair, I don’t think very many of them actually claim to be able to tell the future, and I imagine most of them don’t even want to try. As parents of kids with disabilities, we ask them to. We demand that they try. Our world and that of our children is already far too full of uncertainty. As a result, we ask for information that our kids’ caretakers and educators can’t possibly possess. So I recognize that we really do sort of have it coming.
But God help me, I do so love it when they’re wrong.
When Schuyler was diagnosed with bilateral perisylvian polymicrogyria almost twelve years ago, we had plenty of questions, and Dr. Google was pretty useless at the time. It’s marginally better now, but it’s still a matter of finding nuggets of useful information wrapped in fluffy layers of scary boo. The answers we did get back then, first from Schuyler’s doctors and later from the teachers and therapists she worked with, weren’t encouraging. They could best be listed in two categories: “Terrible Things That Will Probably Happen To Your Daughter”, and the equally delightful “The Many Tings That Your Daughter Will Likely Never Ever Be Able to Do, Ever”.
Both lists were horrible. They’ve also turned out to be equally unreliable. Let’s look at a few items from the second list. I’ll paraphrase from reports and documents and sad conversations over the years, particularly those following shortly after her diagnosis in 2003.
“Schuyler may never learn to read, and her fine motor capabilities will likely prevent her from ever writing by hand. Her condition will leave her fingers and hands clumsy, making it impossible for her to use sign language clearly or tie her shoes by herself.”
It was only as few years later, on the publication of my book, that Schuyler proved that first part wrong.
Schuyler signing the guestbook at Texas Governor Perry’s office, 2009
It took her a bit longer, but over the weekend, seemingly out of nowhere, she conquered another impossible task.
I can’t tell you how proud we are of her. It’s a testament to the idea that we should never say never when it comes to the capabilities of our disabled loved ones, of course. But it also illustrates just how Schuyler works, how she circles around a difficult task and just doesn’t get it, until suddenly she very much does. Schuyler’s old PE teacher tried to show her how to tie her shoes but let it go after Schuyler became frustrated. That was at least two years ago, and Schuyler confirms that it was the last time someone tried to teach her.
As has so often been the case with Schuyler, she just got sick of not being able to do it. When she picked out a new pair of Vans last week, she simply decided it was time, I guess. So she sat down, reviewed what she knew, and tied her damn shoe. I was sitting next to her at the time, and only became aware of her success when she said, “Daddy-O, look!”
One shoe, perfectly tied. Then she tied the other one, just like that. I don’t think she believes in impossible things.
We’ve been told that it is unlikely that Schuyler will ever be able to get a driver’s license or drive a car. Something tells me we should all be much more alert drivers in the near future.
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I’m just waiting for the post about the day she gets her pilots license. Ain’t no strings on this little lady!
Seizures plus an aircraft sounds especially unsafe and insane! I believe that for the most part the sky IS the limit, but the fact is there are just some things kids like Schuyler and my son will never be able to safely do…..Just my honest opinion.
I’ve already covered the seizure thing in another reply, but while a pilot’s license may be out of reach for now because of the communication piece, there’s no such restriction on getting a license to fly a glider. (This, according to her pilot friend who gave her a lesson back in 2009.)
There are always possibilities. Responsible ones, too.
She has seizures! How would it be safe for her or anyone else to let her drive?
Many people with seizures safely drive. In my state, the rule is that one has to be seizure free, as certified by a physician, for a year prior to granting a permit/license; other states have waiting periods of only three or six months. It’s an individual decision, but it’s not uncommon — at all — for the conclusion to be that pursuing a license is best for that person. In most, if not all, areas, being able to drive a car is necessary for independence and employment.
Well he SAID we should all be more alert! 😛 Seriously, she should be fine if she is taking her medication. Most states require that drivers be seizure-free for a period of time (3-6 months) before they’re considered safe to drive.
Wow. Because congratulations on her accomplishment just wouldn’t suffice I guess.
Just because I didn’t say I wasn’t impressed she learned to tie her shoes doesn’t mean I wasn’t impressed. I just chose to comment on a different part of the article, that doesn’t dismiss her achievement. Seriously settle down….
Not one post congratulating her but multiple posts with explanation points of outrage. Settle down indeed.
I’m not outraged. And I follow Robert on Facebook, Twitter, and on his blog so how do you know I haven’t congratulated her elsewhere? You don’t. So maybe you need to settle.
I actually received a super nasty message from an anonymous treat of a person (who I’m not suggesting was Asha), making fun of the fact that a fifteen year-old girl (using a word to describe her that I won’t share) is just now learning to tie her shoes. Seriously.
Having said that, Schuyler has received a tsunami of well-wishing messages, mostly on Facebook (where the photo I posted over the weekend has gotten over 500 likes; I know because she’s following it with surprise and happiness).
People understand that accomplishments like this matter, and they also get that just because Schuyler managed to conquer this particular task pretty late in the game doesn’t mean she’s universally delayed. She’s doing a great many things that are age-appropriate, and accomplishing things in school that are probably more impressive, but the shoe thing was one that had been taken away from her years ago. Grabbing it back out of the “NEVER” column was a big deal. And there will be others, including possibly the independence that comes with being able to provide her own transportation.
Wow. Yeah, I’m not sure where to start, other than to repeat what others have said and point out that most states have laws in place that allow for persons whose seizures are under control (as Schuyler’s currently are, for at least the last nine months) to get a driver’s license. There are other considerations for Schuyler, but certainly seizures shouldn’t be the thing that shuts her down, especially as elusive as they’ve been to catch with an EEG.
Here’s what the law in Texas says:
According to guidance issued by the Texas Medical Advisory Board, operation of personal automobiles in class C (with a “P” restriction) is dependent upon the following conditions: (1) the applicant is currently under a physician’s care to assess control by anticonvulsant medication, drug side effects, seizure recurrence, and any neurological or medical changes in condition; (2) there is no evidence of clinical seizures (including partial seizures) in a 3 month driving restriction period prior to medical review; (3) the applicant’s doctor provides specific recommendations regarding the applicant’s reliability in taking medications, avoiding sleep deprivation and fatigue, and avoiding alcohol abuse; (4) if an applicant has a well-controlled seizure disorder on medications proven by time, and then has a seizure when his physician makes a medication change, he should be allowed to drive when returned to his previous medication regimen.
I don’t live in Texas, laws here are different. I wasn’t sure if Schuyler’s seizure were under control, I don’t think you have blogged about if for awhile. I know as Schuyler grows older you need to keep some medical info private. My son’s seizures are not under control, and at the age of 15 now, he will not likely be able to drive. And no, I wasn’t the one who tweeted the nasty comment btw.
Wow. Great job on the shoes. As a neurotypical person with very poor hand eye coordination and motor planning I’m truly impressed. I couldn’t do as well. If Schulyer does drive ask for some tips from us uncoordinated drivers. Good/Confident drivers don’t know how best to tell those who are not how to drive in the best way possible for them. I do.
Score one from the “Never” column. Congratulations on the shoe-tying. Every little victory deserves to be celebrated.
My older brother has Down Syndrome. My parents got the list of “Things he’ll never be able to do” from doctors, teachers, and other professionals. Included in this list are (among others): telling time, and tying shoes.
He can do both things quite well now. He doesn’t drive, but he’s always sure that his ride is ready to leave on time. He hasn’t been late to work once.