Tuesday, April 26, 2011

The "A" Word

Kim Dull
www.modernparentonline.com (Coming Soon!)

I’m a mom to three kids. I have a daughter, who’s almost seven. (I was going to refer to her here as Princess BossyMcBossypants since she thinks she's in charge of the household, but that seemed a little excessive. So we'll go with Princess.) I have a son, who’s five and a half (heretofore referred to as Monkey Man). And I have another son, who’s almost four (let's call him Bubs).

Princess is what you'd call "neurotypical," or "typically developing." In other words, she's a normal stubborn, bossy, temperamental, yet ultimately very sweet and caring little girl.

Bubs has some slight developmental delays. He receives therapy for speech, fine motor, and social concerns. But we've been very lucky that he's pretty much caught up with his peers thanks to early intervention and the services provided by our local school system.

But this story is about Monkey Man. He developmental delays and sensory processing disorder. And he was diagnosed with autism.

*GASP*! She said the “A” word!

Yes, I did. He’s very recently diagnosed, in fact. We’re still processing this and it oddly resembles the stages of grief.
1. Denial. I wonder if the diagnosis is accurate. After all, he doesn’t behave like what we expect from an autistic child. He’s loving and happy. He plays games with his siblings and loves his trains and cars. We went to a facility based out of a well-known university’s school of medicine. Are they in the business of tagging kids with this label because it’ll help get research?
No. He likes his trains a little too much. For as long as I can remember he’s been interested in spinning wheels on trains, cars and baby strollers to the point of obsession. That’s not to say he doesn’t play with his trains the “right” way. Of course he does. But he gets down on eye-level with the trains so he can see where they’re going. He squooshes his face against the TV screen for no discernible reason other than to be close to the action. He has no sense of personal danger and likes to jump off very tall things, scale any surface that’s not completely vertical and flat, and run smack into anything handy. He loves snuggles and “alligator rolls” in my lap. You know how an alligator rolls and rolls and rolls their catch underwater to drown and eat it? Monkey Man does that in my lap. Awesome, right?

There are so many other behaviors that we took to be normal but are actually not. And the thought that the evaluating facility would label a child as autistic just for kicks and giggles is asinine. That’s Denial at work, I guess.
2. Anger. Well clearly we’re still living in the land of denial. I don’t foresee getting angry, though. Unless you count anger at myself. Of course as a parent -- and as his mother in particular, who had the sole responsibility of caring for and nurturing him during nine months in the womb -- I can’t help but wonder what I did wrong. Did I drink too much coffee while I was pregnant? (I drank coffee, but it was at most a cup a day, which is perfectly safe.) Did I drink alcohol? (Uh, no. And believe me, I could have used a glass of wine a time or two during that pregnancy.) Did I ... Did I ... Did I ... ??? The questions I can ask myself are endless.
I’ve been struggling with these questions since he first started early intervention for speech and developmental delays at 19 months. Truthfully, I think it started even earlier. At 13 months of age Monkey wasn’t growing and they didn’t know why. He’d gained all of nine ounces in four months. Clearly this was a concern. He was diagnosed Failure to Thrive and we then spend the next six weeks going through countless doctor appointments, specialists, and tests. He was checked for Cystic Fibrosis, Renal Tubular Acidosis, growth hormone deficiencies, and even Celiac disease. All came back negative. In that six weeks I think our son had more blood drawn and tested than his father and I have had in our entire lives. It was six weeks of anguish, worry, fear, and sadness at seeing our baby put through so much with absolutely no results. In the end they basically said we just needed to increase his calorie intake. Really, docs? Really?? We vowed then and there that if we ever had any more children we would never put them through such an ordeal.

But you know what? When I feel guilt and anger at the situation, and I start blaming myself, I just need to remember that most likely there is nothing I could have done to prevent this. At least that’s what I have to tell myself so I don’t descend into a sadness and guilt spiral.
3. Bargaining. Yeah, I can see this happening. It probably already is. “Just let him do well at school.” “Please let the OT and feeding therapy work so he doesn’t spend his life living off peanut butter sandwiches.” “Please please please let him be potty trained by the time he turns six.” (I know, that last one is a doozy.)

4. Depression. If you think I haven’t gone through bouts of depression with this then you’re smoking crack. Of course I’ve been depressed. I’m sad that he’ll probably be “different” his entire life. I’m mourning the fact that we’ll never have the little boy we thought we’d have. By now he should be chatting up a storm the way his sister did. He should be driving us insane by asking “Why? Why? Why?” all the time. He should be dressing himself and even probably choosing what he wants to wear. He should be using the potty and learning how to stand and pee like a man.
But he’s not.

And then the guilt creeps in. Why do I feel this way? He’s happy and healthy. He doesn’t care that he’s different. He doesn’t even realize it. Why should it matter to us?

I don’t know. It shouldn’t. But it does.
5. Acceptance. I’ve accepted this on paper but it’ll be a while before I can accept it in my heart. Every friend or family member I’ve told has heard the same thing:

Yeah, we had him evaluated intending to rule out autism. Instead it was confirmed. But it’s okay. Now he’ll have a world of resources available to him that weren’t there before. No one likes a label, but if that label is going to open doors for him that would otherwise be closed, then I'm okay with it.
All of the above is 100% true. Well, except the “it’s okay” part. Because it’s not okay. It should be. But it’s not.

Will it ever be? Eventually. When I finally reach #5.