A Wingspan of Good: Raising a Child With Sensory Processing Disorder

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Sensory Processing Disorder Providence Moms BlogIn May, my son was diagnosed with Sensory Processing Disorder. Upon hearing this diagnosis, I did what all good moms do who were raised in a time when we played outside beyond our parents’s lines of vision and brought PB&J to school every day: I rolled my eyes. I think (I hope!) I refrained from saying out loud what I was thinking: “That’s not even a real thing.”

Over the summer, as I read up on the disorder and attended weekly therapy sessions with Henry, I realized that not only is SPD real, it actually really explains most of my son’s behavior. All of those things that I chalked up to him being a boy? It turns out they might actually be examples of his inability to cope in certain overwhelming situations. Learning what I have so far has allowed me to parent differently, and I am cautiously optimistic that it’s working. Henry is mostly exhibiting less erratic, impulsive behavior, fewer emotional outbursts, and less wild destruction of everything in his path.

While I have learned how to respond to him and sometimes even how to proactively parent (prespond?), what I’ve never understood is what it feels like for him. That is, until last night. Over dinner after a particularly challenging day at school, Henry stretched his hands about eight inches apart and said, “This is how much good I have in me.” Then he stretched his hands as far apart as he could and continued, “And this is how much bad.” Obviously I was shocked and immediately worried, but his matter-of-fact tone and otherwise happy demeanor suggested he wasn’t having a self-confidence crisis. So I took a breath and said, “What makes you think that, buddy?”

Henry’s response blew me away with its detail and insight. He’s six, and yet he can describe how his brain feels better than some adults I know. He explained that he has a cage in his brain, and usually, he can keep his anger in the cage. His eight inches of “good” work around the clock to keep that cage locked. Sometimes, though, the anger gets out, and it’s so big and so strong that there’s nothing his good can do but hope that the anger goes back in the cage on its own. He didn’t know what made him angry; the anger is just there, and that’s his wingspan of “bad.”

I asked him what helps to put the anger back in the cage, or keep it there in the first place, and his replies were a bit difficult to accept. “What about swinging? Or gum? Or heavy work?” I was peppering him with questions, looking for validation that the strategies we have made part of our daily lives actually do work, my panic rising with each “I dunno” and shoulder shrug that I received in response. So I had to take another breath and remember that the kid has Sensory Processing Disorder–it’s probably best NOT to overwhelm his senses with rapid-fire high-pitched questions. He was shutting down and pulling away, and I didn’t want to squander this rare invitation into his brain. I exhaled and calmly asked what I thought might get him talking again:

“What does it feel like when the anger gets out and you want to get it back in?”

Henry described feeling completely and totally out of control. He knows what to do, but his body simply will not do it. His body acts too fast. While his brain is still thinking of what his body should not do, his body has already done that thing. Sometimes this looks like throwing a water bottle at his sister while I’m saying, “No! No! Put that down! No!” and sometimes this looks like him ignoring very clear directions to get in line with his classmates and stop climbing the play structure. As an adult, it’s hard not to be frustrated. I find myself saying to him daily, “Did you not hear me saying ‘No!’?” I’m sure his teachers find themselves saying (or at least thinking), “Did you not hear me telling you to line up?”

What I now know is that he does hear us. His eight inches of “good” hear us precisely and want to obey. In fact, that part of his brain is telling his body to obey, but his body is already a few steps ahead, and it’s not going to listen. Or at least, not always. I am humbled by my son’s unfazed reaction to the struggle going on inside. I can’t imagine how difficult and scary it must sometimes be, and yet he just accepts this as how his life is without letting it define who he is.

Knowing the details of his internal conflict definitely makes parenting even more challenging than it already is and has me second-guessing myself constantly. If I know he has eight inches of “good” that know the right choices, but I also know he has a wingspan of “bad” that won’t implement those choices, how should I punish him when his behavior warrants it? Am I letting him get away with too much? Is it fair to treat his sister differently and to have different expectations for her behavior?

Fortunately, I am not alone in figuring this out, and his weekly therapy will continue to provide him with coping strategies so that hopefully he can control his body more easily. As for me, now that I’ve admitted it’s real and dealt with my shame over my initial reaction, I’m going to help him find a wingspan of “good,” because I know it’s in there.

 

1 COMMENT

  1. Gigi,
    I love a lot about this blog, but the thing I love the most was how you listened to Henry. It’s so simple- he offered information and you controlled your inner coach and just listened. Sometimes I think if I can just do that I will do so much better at parenting. It’s catching yourself in the moment that is tricky. Your struggle parallels Henry’s- cool parallel! Thank you for the honesty.

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