It Could Be Worse, It Could Be Better


It’s been four years since our daughter was officially diagnosed and we took on the challenge of autism parenting. It could be worse, it could be better. That’s true for everyone. You know the rule, STOP comparing. But the autism world is filled with comparisons. Comparisons can hurt, offer hope, or simply be a part of survival. Look at what they are dealing with. And they seem to be doing okay…

Ask a special needs parent what they are thankful for and they already have that list ready to go. And not for any profound reason. Because for every moment I feel a twinge of jealousy toward my parenting friends whose children can do things they take for granted, I will find three more examples of parents who have it harder than me. I suppose that just happens to be the balance I need.

Maybe your two-year old communicates better than my seven-year old; but someone out there is envying me because my seven-year old sleeps through the night, is potty-trained, and hardly ever has a meltdown. And believe me, these are things to be thankful for. Do I sometimes take them for granted? Absolutely.

That last part about “hardly ever” has evolved a bit lately. Autism is nothing if not full of surprises. Was it fair that we avoided meltdowns for as long as we did? An occasional tantrum, sure; but my precious angel could soothe herself back into control most of the time. Depending on your definition of control. Minimal crying, no overwhelming loss of emotion. We wore this victory like a badge.

Until now. Being a glass half-full type, I like to think it’s because she is finally starting to understand the meaning of the word “no.” Before it was just that thing we said that prompted her to repeat the request in a never-ending cycle. Now it appears to be one of her meltdown triggers. I can wrap my mind around that. Other triggers are not so obvious.

My daughter is a sensory seeker, which helps. When your child cannot tell you what’s wrong you appreciate any help you can get. It’s hard to offend her with noise, light, or clothing. I never have to guess if she’s crying because someone upstairs is running water or because the lamp in the other room is too bright. Maybe the furnace just turned on. Is the wind blowing the neighbor’s wind chimes again…? These are questions we do not have to ask in our house.

SobbingOn the other hand, her OCD creates its own mysteries. It’s almost impossible to guess that your daughter is crying because the garage door across the street isn’t shut. I’d bet about ninety percent of her sprinting away from us is because of things like that. There’s a red door over there! I must kick it four times!

It’s possible the sobbing child on the floor is in response to one of her fifty Barbies being tossed into the wrong side of the toy chest. Or maybe she was interrupted while tapping on each kitchen cupboard three times. Did one cupboard door only get two taps? These are questions we do ask in our house.

Don’t get me wrong, I can appreciate the very real pain of an obsessive cycle unfulfilled. But it’s like a special edition version of Kreskin’s ESP over here. With tears. Player one: pick a random thing in your environment that you can imagine being slightly different or possibly touched in a very specific way. Without using words or gestures, cry until your opponent makes it happen.

I’m surprisingly good at this game, but I never get to be player one. We are now playing all day long, and tears have been replaced with high-pitched screams. Falling to the floor while rolling, kicking, and doing what can only be described as passionate dance moves is maybe a bonus round of sorts. I’ve been thinking that if I can find the right song, playing it every time a meltdown starts may actually make it more enjoyable. If I’m right, do I get to the next level? Because I don’t want to go there.

In the meantime we are losing every round; and sometimes the rounds are every fifteen minutes. She even screams when she’s happy. For the happy screams we’ve been blowing a bicycle horn for her amusement because it seems to snap her out of it for a moment. I like to imagine what the neighbors must think. Screams and bicycle horns all day long! And yesterday I kept hearing the song Thriller over and over again while that poor little girl just sobbed….

Clearly some controlling force in the universe came to the conclusion that I thought I had reached expert level in this game and needed a new challenge. Maybe Kreskin himself. Lesson learned. Now how do I go back to level one?

YoutubeLike any clueless gamer, I went to YouTube for the answers. And there it was. Meltdowns everywhere, along with various parenting strategies. Seeing other parents with similar or worse situations cheered me up immediately. Let the comparisons begin! I need fuel to rationalize my feelings about this new situation. Then I’ll start working out an action plan.

My husband had the opposite reaction. Seeing such similarities in other families made him think maybe this wasn’t something we could simply fix and move on from. Maybe this was a way of life. Maybe it would get worse.

Maybe. But so far nothing has worked out the way we thought it would. Why should this be any different? Then I find myself telling him not to make comparisons because they mean so little. Ironically, I drive home every point with my own comparisons. As if I don’t already know how everything can change one way or the other at any time.

You play the game and you remain aware of where everyone else is on the game board. So what? Sometimes I need assurance, and sometimes I need to drown in self-pity. Sometimes I just need to see how someone else got from here to there. Then I soak up all the things I take for granted while I fight for a thing someone else is taking for granted. It could be worse, it could be better. My happiness could hinge on which side I choose to see more clearly, but the two remain. That’s true for everyone.


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