As a parent of children with special needs, I have always thought that I—and others like me--experience feelings on a level that most parents do not. We experience more stress, lower lows, higher highs and a roller coaster combination of emotions along the way. We also tend to be more suspicious of when things are going well. At least I believe so when I talk to people making a similar journey. We are constantly reaching for some goal, fighting the good fight, or going from one tribulation to another. Well, it seems that way…at least for a lot of us.
That’s why I guess I am waiting for the other shoe to drop. Right now, B. is in a pretty good place. We have discovered the right cocktail of meds, the right balance of support, and have finally begun to see some formal support emerging on the horizon. Even school has been going well—a wonderful unexpected boon. So why do I feel like this is the calm before some major storm? Probably because being a parent of special needs has made me somewhat cynical. Things can’t be going well since there is always some new hurdle to clear or some new mountain in the distance. If I take a deep breath and allow myself to calm down, I’ll jinx it. It really is hard to stop and smell the roses when you are always looking out for the thorns.
And the other shoe is a humdinger. It is one that I think I have in common with countless other parents. If the definition of Autism is going to be rewritten, as they are proposing in the upcoming DSM-V, will C. still fit the parameters under the new guidelines? Will they still see the same kid I see? Or will he no longer meet their qualifications due to the supports and progress we have fought for along the way? He is considered high-functioning by THEIR standards…but will he be deemed too high-functioning to qualify for the same diagnosis now? Where will the cut-off be? I shudder to think what will happen to C.—and thousands of other people like him—if the line by which we have made determinations in the past is suddenly moved further down the road and he is left standing on the other side. What is frightening is that he will still be the same kid with the same needs—but he may no longer be eligible for the very supports and accommodations that have helped him reached this point. The dread I feel if that shoe should fall leaves me with a hollow, sick emptiness inside. The thud from that shoe will have a tremendous, reverberating sound across the country as more people will be left dangling through the cracks. Autism is a spectrum disorder—but what happens if you are considered to be on the fringe of the rainbow when you were once squarely considered a red-orange?
Is it any wonder that the chaos theory makes so much sense to some of us? We can’t enjoy a moment of peace without worrying about the next cycle of stress, concern and doubt. My husband and I worry that we are in some bubble that will pop with B. and his relative stability right now. We worry that the relative stability that C. has had will be violently popped in order to “re-assign” perceptions and change numbers. When you are on this side of the “discussion” the perspective is definitely skewed and subjective.
So here I sit in a fragile state feeling like I’m stomping on the eggshells all around me. I’m afraid to move, afraid to step in the wrong direction and plunge us back into a more chaotic or challenging circumstances. Don’t get me wrong, I’m happy B. is doing well and we have been able to avoid some of the screaming, hitting, jumping and the like. I just keep thinking it can’t last because the only constant is inconsistency, surprise and chaos. You know, that never ending cycle of waiting for the next issue, condition, or thing to try. Or just waiting to hear the thud of that other shoe falling with a resounding thud on the floor you just cleaned…