Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

The Crash is Imminent

Courtesy FreeDigitalPhotos.net

Courtesy FreeDigitalPhotos.net

Our son has autism. He has extenuating circumstances from exposure to noxious substances pre-and-postnatally. He was neglected and allowed to languish in the foster care system. There are genetics and neurological things at work that we have yet to fully understand. What I’m trying to say is that our son has challenges. Parenting a child with such challenges can be…well…challenging, to say the very least. Paradoxical as it seems, along with the many difficulties that come along with parenting a special needs kids, one of the most challenging times in our lives is that all-too-infrequent time when your day is going great. Yes, you read that correctly. Hear me out. Your kiddo is interacting, responding, behaving appropriately. Life is good. You’re movin’ and shakin’, rockin’ and rollin’. You allow yourself to think that real progress is being made – and maybe it is, but hold on. The wind shifts, just a bit. And then a bit more. Then you realize, the bottom is about to fall out…

We’ve been walking that fine line for the past three days. The tension is building. The signs are all there: increased perseveration, manic behavior, language regression, apparent lack of need of sleep, and more than expected potty accidents. We recognize these as symptoms of the impending crash. And so we add additional proprioceptive input. We increase our patience and tolerance for back talk and arguing. We know that we’re in “that part” of the cycle and swallow our frustration when we have to change the fourth poopy diaper of the day. We brace ourselves. We make extra doubly sure all meds are given (they always are). We prop our eyelids open with toothpicks when we have to run on two hours of sleep stolen in bits throughout the day. We pray that the “difficult” time in his cycle stays away as long as possible.

And then we pray that it gets here already so we can stop walking on eggshells and just deal with it. So that we can get to the “better” part of his cycle.

In fancy schmancy psych talk, this is called mood lability. In my mind, this is called unbelievably hard. In between the peaks and troughs, we have a moment, maybe two stolen moments or maybe two full days, where we get a peek into the child he could be. We get a burst of cognition; an appropriate – and humorous – joke; connections are made and thoughts are expressed. And then, like evidence of a Big Foot sighting, it’s gone.

This is where I part company with many in the autism community who say that they would never try to change their child’s neurology. That doing so would change who he is, or that it would alter his personality if the autism wasn’t there. Well, to that I say, I hope like hell it would! See, I believe he knows when the “bad” cycle is here. I believe he knows when he is out of control – not in that moment, of course, but after the furniture is put upright or when the adrenaline wears off and his self-inflicted pain is felt. And I would take those scary feelings of being unsettled and out of control away from him in a heartbeat if I could. When his anxiety is through the roof, and he asks about something for the 152nd time that day (literally – yes, literally), or when he starts physically picking himself, I would pay any amount of money for the magic pill to take this all away from him.

Because that’s what parents do. We try to take the pain, the struggle, the hurt and make it go away. So if my desire to lesson my son’s load, to take some of the weight off of his shoulders, bothers you, I’m sorry. But I feel he’s been given more than his share of struggles already. And enough is enough.

Kelly_stars

One comment on “The Crash is Imminent

  1. Maria
    September 24, 2013

    I am on the same ride times three. Yes I have changed my children. Have one that is using words and another that uses a communication device. I finally got respite this year. We have a bit of a rest. We have few friends most our military families with children/ autism. We feel we are preparing our children for a life without us. Most of time 90% my children are sweet, loving , kind and quiet. But when colitis comes back and my child cries and I am changing my eight olds diaper because we go back to diapers when it happens. We wish we could just take away all the pain. It’s work to improve the life of your child. It’s easy to accept and raise your arms and do nothing. I accept my children I roll up my sleeves and get to work my work is not done.

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