Dream Map to a Mind Seized

December 9, 2012 4:00 AM

How do I empower someone without language, sign, or gesture? What is it like to experience aphasia, dysnomia, auditory and visual distortions, and variable physical sensations? At times I imagine that entering into my son's sensory world—his own particular neurocosm, perhaps I should say—is a bit like walking into Lewis Carroll's Wood With No Names ...

English professor Amy Leal wrote about her young son's son's unexplained regressions and loss of skills last year in Little Boy Lost. This year she returns with a beautiful and heartbreaking study of her son's condition in Dream Map to a Mind Seized.
posted by Joe in Australia (6 comments total)

The parent of one child whose skills disintegrated when she was 3 recalls his little girl waking up in the middle of the night screaming, "Daddy, can't talk, can't talk!"—and she never spoke again. I thought of this when I heard Julian cry in that way; it was the sound of terror from the edge of the abyss. Every night when his wailing stopped I cried and thought to myself, I am losing him. He is losing himself. And we both know it.

Jesus that's heavy. The thought of a child's eyes wide with existential terror is an image I hope I'll need never confront in reality.
posted by Alex404 at 5:31 AM on December 9, 2012 [10 favorites]

I'm sitting here with my kids, one of whom is a high-drama giant-vocabulary haver with delicate feelings and weird digestive issues, the other a prodigious little climber who administers heart attacks regularly, and feeling uncommonly grateful. My heart breaks for this little family.
posted by chesty_a_arthur at 6:05 AM on December 9, 2012 [4 favorites]

This condition, or set of conditions, gives me a sense of urgency for science like nothing else on earth. To find that your toddler's eyes are going blank, that they are losing language, is so dreadful it's hard to even contemplate.

So, solutions or leads so far for this family: they saw some improvement with removing glutamate and hydrolyzed proteins and protein isolates from his diet, and then found that part of what's causing the regression in his case is night-time seizures that prevent his brain from integrating the previous day's learning.

I hadn't heard that about nighttime epilepsy; that's very interesting. Anybody know more? Do they think there is a common cause of the other autistic symptoms and the start of the epilepsy (eg is the epilepsy triggered by some other kind of maybe autoimmune damage to the brain)?
posted by LobsterMitten at 8:54 AM on December 9, 2012 [2 favorites]

daddy! can't talk! can'! talk!

Lots of people have nightmares about spiders and such, but this story is now my nightmare fuel. Today, I will not be asking my kids to quiet down no matter how loud they get.
posted by davejay at 9:18 AM on December 9, 2012

I have a friend whose daughter has Rett Syndrome and her experience was similar, a healthy beautiful little toddler girl who is walking and starting to talk and then a regression. It's been amazing to watch my friend, who is about 5 years younger than me and was always 'the baby' in a way, turn into this fierce mother tiger determined to seek the best care, treatment and education for her daughter.
posted by shoesietart at 1:45 PM on December 9, 2012

The parent of one child whose skills disintegrated when she was 3 recalls his little girl waking up in the middle of the night screaming, "Daddy, can't talk, can't talk!"—and she never spoke again.

That's the most terrifying thing I've ever heard. I'm cold all over. Can't read this article, sorry. My heart goes out to the people who are living it.
posted by away for regrooving at 11:03 PM on December 11, 2012