That extra hour

Jumping out of bed is a necessity of care giving. There are no true “days off.” There are routines to keep and needs to meet.

I’m an early riser. I’m usually sharper in the morning. Along with the various chores, it is a time when I pray, think, read and generally enjoy the (relative) quiet.

Lately, I’ve been turning off the alarm and going back to bed. Sometimes I grab an extra half hour. Sometimes an entire hour. A couple of weeks ago I really overslept and had to hurry to feed Joey and get him on his bus.

I can’t remember the last true “sleep in” day I enjoyed, so these stolen minutes seem luxurious. And the chores get done and the world doesn’t spin off its axis.

Caregivers always walk a fine line between responsibility and carry-the-world-on-our-shoulders-kind-of-crazy. The reality is that the world doesn’t need the latter from us:

It is in vain that you rise so early and go to bed so late; vain, too, to eat the bread of toil, for he gives to his beloved sleep. (Psalm 127:3)

Take that extra hour. It’s yours.

We might be front line, cutting edge and all that

There’s a fascinating NPR interview with Steve Silberman, author of the new book Neuro Tribes: The Legacy of Autism and the Future of Neurodiversity.

Silberman, recounting the fascinating history of Hans Asperger’s discoveries, defense of special needs people and survival through the Nazi era, challenges some of our reigning assumptions about autism, such as categorizing people as “low or high functioning.”

But what leaped out at me was his critique of research aimed at finding “the cause of autism,”

Looking ahead, Silberman says that while much of today’s autism research focuses on finding a cause for the condition, society might be better served if some of the research funds were directed instead toward helping people live with autism. “I think that society really needs to do a bit of soul-searching about how we’re dealing with autism,” he says. “We need to get over our obsession with causes, because we’ve been researching the cause of schizophrenia for decades and we still don’t know what causes schizophrenia exactly… one of the arguments that my book makes is that we think that our society is taking autism seriously and dealing with the challenges that it presents by pouring millions of dollars into it. [They’ll say,] ‘Let’s find more candidate genes.’ Well, we already have 1,000. ‘Let’s find more potential environmental triggers.’ Well, everything from antidepressants in the water supply to air pollution has been identified as possibly contributing to autism. What I say is that at least some of that money should be redirected to things like helping autistic adults live more satisfying, healthier and safer lives, or helping families get the services they need or helping families get a quicker diagnosis for their kids.”

Implicit in that analysis is the importance of caregivers. We are on the front line of helping people with autism have “satisfying, healthy and safe” lives.

Not too shabby for a bunch of on-the-job trainees.