Stigma Fighters : Danielle Davies

Stigma Fighters : Danielle Davies

When my son was first—and finally—diagnosed with Asperger’s, my reaction was total and complete validation. I know…it sounds awful. My reaction was all about me. As a mother. A caregiver. A disciplinarian. I think it’s like this for a lot of parents…the reaction we have to our children’s diagnoses has, at least immediately, more to do with us than them. We may be in denial, we may rage, and scream and mourn our expectations, or, like me, we may feel totally out-of-place joy and validation.

By the time my child was diagnosed with high functioning Asperger’s, he had just completed his second year of being the ‘bad boy’ at preschool, a label that didn’t sit well with me. Not only was he a totally different kid at home—sweet and fairly obedient, and also silly and notably empathetic—but as a former over-achiever, I couldn’t stand the glares—real or imagined—from his teachers and the parents of his classmates. She’s a horrible mother. He’s an awful little boy.

And my guess is, looking back, he did seem pretty awful. And I probably also seemed pretty ineffective as a parent. The key word here is ‘seem’, because as we all know, things aren’t always as they seem.

Once we had the diagnosis, however, it was like I had exactly the moral shield with which to defend us. My son isn’t bad, it said. He has Asperger’s. He is anxious.

And while I was correct, I wasn’t right. Because what I failed to notice then was that although I was doing my best to help my son adjust, although the label did explain a literal bevy of past experiences, and although I was rightly glad to have a reason that my baby couldn’t leave my side for preschool like all the other little kids, I saw the diagnosis more as validation in us—my parenting, his behavior—than as what it really meant for us as a family. I saw it more as a good thing, an explanation, than as the arbiter of permanent anxiety that it really was for my son.

There is a storybook by Kevin Henkes called Wemberly Worried about a little mouse who, well, worried. She worries about everything. From her favorite doll being lost to it being found and nobody liking it. From no one coming to her party to everyone coming and not having fun. It’s a sweet little book and we read it a lot but like all sweet little books, it has a sweet little happy ending where Wemberly meets a friend who is just like her. The end.

It doesn’t mention that when she goes home after meeting this sweet little friend that she swears she had the kids number in her pocket and that she is supposed to go over there for a playdate and that you, so desperate for your child to have that special friend, find yourself aimlessly driving around town pointing at little children and asking if they are the one? The child who wants to be friends with your son? Because your son is repeating himself over and over and you will literally do anything to ease his mind.

It doesn’t mention that later that night, Wemberly will overhear a conversation at the front door when your neighbor is dropping off some misplaced mail about the Easter Bunny, or conjoined twins, or a surgery, or an illness, or a fire, or a ship accident or a bouncy house or any of the million other things that are anxiety provoking triggers for your little child and that after she leaves, your child will break down. He will panic. He will hide. He will dress up in army fatigues from head to toe because that is what he loves and also what makes him feel safe and will reason his fears so succinctly, so relentlessly, for so many hours, that you will find yourself hard-pressed to explain why exactly the Easter Bunny, or conjoined twins, or any of those anxiety provoking triggers are indeed harmless.

The sweet little book doesn’t go on to say that after this long and tiring day where your whole family just needs to rest, to recharge, to sleep before resuming battle the next day, right as you are all about to climb into bed for story time, your son realizes that he has misplaced ‘favorite’, his favorite matchbox dump truck. It doesn’t mention that your husband and you will glare at each other as you search under couches and cushions and blame one another for (a) losing the truck or (b) not buying a replacement truck any of the thousand other time that this has happened. It doesn’t mention that your tiny baby, who is under two years old at the time of her big brother’s diagnosis, is crying. Or that she needs her mommy. Or that she was perfectly ready for story time and doesn’t understand this sudden upset. It matters only that you find. the. truck.

The book certainly doesn’t mention that you know this from experience. That you have experienced nights of not finding the truck. The t-shirt. The stuffed animal. The pacifier. And that those nights can barely qualify as nights at all, more like passages of space and time alternately spent soothing your son and crying yourself because you are simply so tired and because you have made the idiotic rookie mistake of thinking that unconsciousness meant sleep. You let that fake sleep fool you. But after five hours, at 2am, the relentless worry woke your son and the search continued. Because while your little child is exhausted, anxiety knows no time. It is there, and it is not going anywhere until the truck is safely where it belongs. There is no sleep without the truck. Or the T-shirt. Or the pacifier.

It doesn’t talk about how in years to come, you will have to research every movie, every book, to confirm there isn’t a death or prolonged illness. You will learn this after the thrill of watching Star Wars with your son, an event you have looked forward to as a passing down of the torch, that unfortunately doesn’t go as you planned. That the impending death of Princess Padme in the third installment of the ‘new’ Star Wars—the one movie neither of you have ever seen, not even now, three years after seeing all the others—will consume your son for no less than four months. That he will be so devastated by the idea of her death that he will vow to become a director when he grows up to right this wrong, and that the two of you will spend hours researching YouTube for an alternate ending.

Wemblerly Worried doesn’t mention that you know this is insane. That you are sure there is a better way to handle things but that you just don’t know what it is, and so you will spend hours, and years, talking to experts and therapists and consulting books and friends and trying one strategy after another but always, and every time, thinking you could have done it better. That no matter which way you’ve approached it, you will feel as if you failed your child.

It will not mention that on the few times in his 9 years of life that you have let yourself relax, have let yourself not worry about his day or his week or his experience, have, in essence, let down your guard, that those are the days when his world collapses. And you will realize you failed him again because you did not read that crystal ball that only you have access to and know in advance what struggles he would encounter on this day. That when you finally think you’ve got this balance figured out, and you start to work on a project that isn’t about your child, and you are accused of being a poor parent, you will take that to heart more that any other thing anyone could say about you ever. Because you will think it’s the truth.

The book definitely doesn’t mention you or your own anxiety or the fact that your anxiety compiled with the anxiety of your child—your world—have at times left you almost debilitated with worry. Have left you so consumed with making the right choice for your son that you literally forget which way is up and which is down and become unsure of each and every fact of your life except this one—you love this child.

You love this child. You love this child. You love this child.

You can only hope that this is enough.

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maybeDanielle Davies lives in South Jersey with her fantastic—and fantastically exhausting—family. When she’s not shuffling her children back and forth to school or finding her husband’s missing socks, she works as a freelance writer and artist, and aspires to be a creative visionary with wildly successful titles to her name. While she waits for success to roll in, she can frequently be found updating her somewhat famous website, www.mylifewithbradleycooper.com, and teaching others to find their creative expression.

Danielle can be found on her blog and  Twitter

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