I have held off blogging about The Enigma in the hopes that she would blog for herself; such a thing would be extremely challenging, and I’ve seen some kids do it who are then attacked by their commenters as being fakes.
There is a process called “facilitated communication” by which one person holds the brain-injured person’s hand at the wrist and this helps the brain-injured person “type out” a message on a board. The reaction from the casual bystander is to think the facilitator is doing it, not the brain-injured person. (Of course, anyone who tried to force The Enigma to do anything would realize how silly an idea that was.)You can read about one aspect of the controversy here. The Enigma is one of those kids who has gradually gained independence in facilitation. For some things, she doesn’ t need any help at all any more.
In the previous post, Troop mentioned something about having crosses to bear, and it reminded me of a discussion I’d had with a friend when The Enigma was around ten. He was talking about a basketball player or movie star who had a handicapped kid (maybe adopted one, even).
“They say it’s a blessing? Is it?”
“Having a special needs child. Celebrities are always talking about what a blessing it is.”
“Are you nuts?”
I thought—and I still think—this is just a stupid celebrity thing. I mean, what are they going to say: “Every day is a soul-crushing burden”? (Not that I have felt that way, but I’ve certainly seen parents who did.)
It’s hard to enumerate the costs. Financially ruinous, of course, several times. (Most recently, shortly after being reduced to a part-time employee, The Enigma incurred a $12,000 dental bill.) My own health shot (or at least diminished), as I’ve spent 15 years tending her at nights because she doesn’t sleep well. (Health experts disagree on a lot of things, like nutrition and exercise, but they all seem to agree that not getting enough sleep will kill you.)
To say nothing having missed many of the joys of a normal life with her, and feeling that loss acutely as each of her siblings grow up.
But then, it has to be said that if the condition is horrible, some of the fallout has been decidedly positive. The Enigma attended a special school where they said their ABCs and motored her through doing cut-outs; at twelve, with the help of the Institutes, we put her on a home program, where she ultimately developed the ability to comprehend over 20 different languages.
So, her siblings also have been homeschooled. The Boy was a particular beneficiary as he could’ve skated through school on charm.
Also, looking into alternative approaches to handling The Enigma’s condition led to the elimination of my allergies, and seems to have The Boy on the road to recovery for his diabetes.
Now, I’ve come to understand The Enigma somewhat better over the years. We don’t really understand these kids—I’ll get into why in a later post, but curiously tantalizing fact is that blood tests on them have revealed compounds similar to hallucinogens—and it’s true that they are alien to us, in the sense of their experience and intelligence. (Homo sapiens bases its idea of intelligence on the ability to speak.)
But even respecting that difference, let’s not pretend that brain injury is not a deficiency. Even if it results in hyper-intelligence in certain areas (as I believe it does, which is something else I’ll get into later), let’s not go down the deaf route of declaring some kind of legitimate lifestyle choice.
It’s a challenge. And a struggle. But as Troop points out, there are many crosses to bear. If there’s a sin, it’s allowing yourself being defined by the burdens rather than the blessings.