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Special Needs Parents: Where is my bed?

Posted Nov 29 2008 12:21pm
I've been mulling a post from abfh, which is something I do a lot, because she has lots of interesting things to say and insights to share. This one, in case you didn't click on the link, is about autism parents. The study is about how parents of autistic kids have a higher rate of neurological conditions than other parents- including depression. The good news was that only 1.8% of the mothers of autistic kids were diagnosed with depression. As she so correctly put it: "Contrary to the widespread stereotype of the suicidal, emotionally devastated autism parent, these families with autistic children were enjoying their lives just like other families. The fathers were no more likely to be depressed than any other fathers, and more than 98% of the mothers did not suffer from depression."

Why have I been mulling this? Because I have a problem. Something is wrong here.

A great many of the parents I know- particularly the mothers- have special needs children. Not just autistic children, either: Down Syndrome, hydrocephalus, cerebral palsy, ADHD, ODD, and a peppering of other disabilities, defined or specialized or what have you. Perhaps the vast majority of us are not diagnosed with depression. I suppose that would be correct.

But we are all, to a [wo]man, very, very, tired.

Exhaustion lurks around every corner, haunts every house, lingers in the corners and hangs in the air; exhaustion on a level I do not see in homes without special needs children, exhaustion I never see etched on the faces of mothers with no disabled children. In other homes, in other parents, there is a laugh-it-off: jokes about having drinks are lighter-hearted, comments about bad days are less edged, giggles about sleep depravation are followed eventually by a nap or a day at the spa.

What is even more interesting is that we seem less permitted to be tired. We have to attend more meetings, talk with more teachers, run around to more therapies, and meet more needs. Many of us can't just tell the kids to go out an play while we fix dinner. Every moment is a teaching moment, every chore a lesson in life skills. Many parents doubtless think nothing of having their child dress in the morning, come down to breakfast, eat their food, put on their coat and backpack, and get on the bus. For many families I know, each step of that process must be carefully choreographed, supervised, assisted, broken into smaller steps and specifically taught. The process of choosing clothes alone is actually a multistep process involving visual discrimination, sensory processing, motor planning, dexterity and coordination... and several other skills most people take for granted. All of these things have to be broken down and taught to many of our kids. And I'm not talking preschoolers here. I know several families directly with teenagers dealing with these issues- and know of several more families in the system. We have no time to be tired. Our babies are counting on us not to be tired.

Exhaustion and stress are funny things. They are not depression, though they can lead to depression. You can be depressed without being diagnosed as such. I had a therapist I was seeing for "mood disorders" before I had Joey who, upon hearing his diagnosis, suggested changing my own diagnosis to depression (I stopped seeing that therapist). Having thoughts of suicide and driving off a bridge with your child would, I think, be seriously in the running for "depression." However, it's not the only outcome, and if I was having such thoughts, I would certainly be running- not walking- to the nearest psychiatric office for help.

Exhaustion leads to other problems. Sleep issues. Eating issues. Mood issues. Things that just get brushed aside as stress, as exhaustion, as "oh, you're a mom, that's the way it is! Hahaha!" Things that get laughed off as "put down the cheeseburger, lady, and go for a walk!" Things that get ignored as "boy, you should take a nap/go on vacation/hire a respite worker for a bit" as if you had time/money to do these things. As if an hour once a month did anything for the kind of exhaustion I am talking about. Or even once a week.

And it isn't just 1.8% of the special needs families I see with this exhaustion thing. It is 100%. I suppose there could be whole cities somewhere elsewhere with special needs families who are not exhausted. I'd like to meet some. I bet they'd have a lot of ideas to share with this little town- and we'd be all for them.
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