Monday, May 12, 2008

Special Needs Parents: Where is my bed?

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.


JoeyAndyDad said...

I wonder if being a parent of a special needs child qualifies as fibromyalgia. :) LOL. I'd write a serious answer, but it's time for bed.

Niksmom said...

Oh, you are sooooo living inside my head right now! After multiple nights of interrupted sleep, days on end of pain episodes intermingled with tantrums and meltdowns over the same things that once brought laughter and squeals of delight. Yep, I work out 5x/wk and can't seem to lose a pound b/c of the literal stress my body goes through. It's in total survival mode all the time. If you ever find that town of non-stressed SN parents let's organize a road trip...or set a sister-city program! LOL --b/c if I don't I'll cry.

Maya M said...

Excellent post.

abfh said...

I've written a response to this post.

ghkcole said...

Ditto Ditto Ditto.
I'd say more, but damn I'm tired.

Heather said...

Thank you so much!! I'm writing a book - more a survival manual - for SPED moms because I know we all need to hear we aren't alone in our thoughts : good, bad, and ugly. You are wonderful! You are strong! You are a Goddess! Martyrdom sucks big time!! I'm with you every step.

Lou said...

thank you for this article, for clearly putting in words exactly what is in my heart and mind... I do struggle with depression, I know I do.. I have moments where I wonder what I did to desrve this hell... where I try to teach and handle and love and guide 2 blind and autistic children. Children who wont reach back to me, no matter how many times I try to show them my love... children who wake night after night after only 3 hours sleep... children who cant go to the toilet, dress themselves, articulate their needs... children who are on such a strict diet to try and control their autism that I end up cooking elaborate meals daily... it's hard... so hard...and not one person in my life (in the typical world) can understand our daily pain.. Yes there is joy and fulfilment and there is such emotional growth in being a parent of special needs kids... however there is an opportunity cost in everything.. and ours is that we are only in our late thirties and feeling like we're 60... we're financially exhausted most of the time.. and emotionally and mentally exhausted too... it's a rough road to walk... it's always nice to hear and read that I am not alone... thank you again.

Mama of 7 said...

OMG! Your article is so relevant to my life. It is comforting in an odd way to know that I'm not the only one suffering. Absolutely no one I interact with understands how tough it is in my house...not even my own husband. For if he knew just how depressed and desperate I am 24/7 he wouldn't leave me here struggling alone with my dark scary thoughts. Although my grown children and other family members act like they know how tough it is here and how lonely and isolated I am they never offer to give me a break and I'm worried that someday I will break. It would be nice if there were campaigns to enlighten society to this problem of exhausted parents of special needs children. Everyone knows about breast cancer awareness I'd like to see it be common place for people to offer respite to a family with a special needs child (Exhausted Parents Awareness!). Even if only for a couple hours to get some sleep or to go grocery shopping etc. But because there isn't an epidemic of us parents committing suicide it'll never gain the attention it needs.