Wednesday, May 2, 2012

What Doesn't Kill You Makes You Tired

Amen! An autism veteran friend said this, and it resonates with me in a big way. I am tired…in fact, most days I am exhausted. Friends, and sometimes even cashiers look at me and tell me I look tired...BTW, not a compliment!! I must have missed the memo, but it seems kids with autism don’t always like to sleep through the night. Ryan will wake up at 3AM rarin’ to go, often laughing and giddy. I especially dread those nights when he decides to climb out of bed (he sleeps between my husband and me) and turn on the bright ceiling lights. Last night was this kind of a night…

Turns out, this is very common with autistic kids, who for some reason have abnormal circadian rhythms—that whole cycle thing that tells your body it’s time to go to sleep. It’s either impossible to get them in bed asleep, or their sleep-wake patterns are mixed up. And because my husband and I still have to get up in the morning and go to work, we really don’t appreciate the middle of the night play sessions.

Beyond the sleep thing, there are all kinds of other blood pressure-raising, anxiety-inducing moments that would tax even the most chillaxed parent. A child with no sense of fear or boundaries is difficult to care for. A simple and routine thing like using the bathroom cannot be done unless I have someone to watch Ryan. Being distracted for a few seconds to respond to another child’s request can mean he’s out of sight. He doesn’t respond to his name or make sounds that might clue me in to where he’s gone, and I am always imagining the worst. 

Caring for an autistic child is exhausting and it’s stressful. A 2009 study found that raising a child with autism induces stress levels not unlike those experienced by combat soldiers; it found mothers of older autistic children had levels of cortisol, a stress-related hormone, similar to those found in soldiers and people suffering from Post Traumatic Stress Disorder. And not to minimize the stress of military combat, but parents with autistic children are not on a one-year tour, they’re on a lifelong journey.

And having a special needs child can be an isolating experience. It’s hard to talk about autism with someone who isn’t going through the same thing. Unless you’ve lived it, it’s hard to really understand what we are dealing with physically, emotionally and financially. Friends with “normal” kids have a whole other set of concerns that sometimes seem trivial to me…they worry about the expense of vacations while I wonder how I will afford the level of therapy Ryan needs; concern they’ve selected the right preschool to ensure acceptance to a good private school while I can’t wait for the day Ryan can speak a sentence. Not knowing what the future holds is perhaps the greatest stressor. 

Autism takes its toll on the whole family; none of us are unscathed. I try to carve out time for my other kids, but there is only so much of me to give. I don’t always feel like doing something with Meghan after I’ve spent the better part of a day following close behind Ryan, trying to never let him out of my sight, knowing he’ll take any opportunity to try to elope. My oldest son has become quite accustomed to me ordering him to drop everything to help search for his brother. 

All that said, I wouldn’t trade Ryan, autism and all, for a “normal” kid and let’s just say I don’t think I’d win a Mother of the Year award…I’ve served English muffins for dinner more nights than I can count. My kids no longer ask, “What’s for dinner?” but rather, “Will we be having dinner?” They know there are a lot of days when the thought of cooking a meal is too much.

So you don’t have to ask when you see me looking worn and disheveled—yes, I am tired. I’m the kind of tired a good night’s sleep isn’t going to cure…but I’d gladly take one.

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