“Is he like an alcoholic?”
Did I just say that?
“Has he fallen off the wagon?”
Did I just say THAT?
I’m talking to an OT about my seven-year-old son. He’s not an alcoholic. Obviously. He has SPD, and God bless this lovely woman because she understands my awkward analogy. She understands what I’m asking. What I’m thinking. What I’m feeling.
What I’m asking: Is he always going to be one drink away from falling off the wagon, or one deficit away from the sensory gym?
What I’m thinking: I really want to believe this sensory stuff is finally in the rearview mirror, but it’s not.
What I’m feeling: Overwhelmed. Disappointed. Defeated.
She’s just completed a brief visual processing evaluation on my son. I asked her to do it because learning to read has been a challenge for him. To be honest, reading with him is sometimes like reading with a drunken sailor. He gets overwhelmed when there are too many words on a page, and he often skips words and lines.
I let him experience first grade as a regular kid (i.e. with no OT, speech, tutoring, or any other therapies), and I have no regrets. As scary as it was, it was important let him loose and see where he (we) landed.
He (we) landed here: Nystagmus when crossing the midline. Decreased eye convergence. Head and eye dissociation.
“He’s not an alcoholic,” she says, “and he hasn’t fallen off the wagon,” she adds. “Most likely, these issues were always there. He just wasn’t old enough when he initially did OT to see them.”
I’m suddenly keenly aware that regardless of how long this sensory journey has felt, my son is still so young. He has much more physical, emotional, social, and academic development ahead of him, which means our voyage is far from over.
“Let’s tackle this medically first,” she says. “After a full eye examination and vision therapy to treat the nystagmus, we can go into the gym and work out the visual processing kinks. There’s a lot we can do, but let’s take this one step at a time.”
One step at a time.
First, make appointments. Second, verify insurance benefits. Next, pray that afterschool therapy appointments are available and that none of it interferes with the regular activities of a second grade boy who wants nothing more in life than to be just like everyone else. Then, let it loose like a balloon (or at least try). Finally, convince myself that even though it feels like we’ve fallen off the wagon, we were never really on it.
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The Runaway Mama by Jen Gregory 
Dear Runaway Mama,
My experience has been very similar except that my guy is entering 7th grade (huh????). There are times when we all feel g is “just like everyone else ” (for better or worse) and there are times where we feel Completely Inundated with medical and social and and academic and other stuff…like you, we try to keep his life kid-appropriate and not focused on difference. It’s a trip for sure!
Thanks for the post,
Full Spectrum Mama
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Thanks for reading! It’s been a while since SPD has been our focus, and for better or worse, it’s front and center again. This too shall pass…and then reappear. 🙂 Thanks again for the support.
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Great post. I very much relate. My son (who is three) was diagnosed with ASD this past winter. While relieved to have an answer and to have finally found parents who “get it,” I had a recent epiphany as well that all this therapy we’re starting now is merely the beginning. We don’t just have a long ways to go: we have a lifetime to go. My son will always struggle. I just hope to make that struggle as painless as possible.
I look forward to reading more from you.
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It’s funny, because our initial therapy (OT) yielded results immediately. His improvements came fast and frequently. Eventually, though, we hit a plateau that revealed the really hard bits that still needed to be worked out (if at all). Good luck with your son, and thanks for reading!
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Good news, mama,
Our guy (now entering 7th grade) is WAY better at handling sensory overload. We rarely have meltdowns anymore. And he’s able to articulate his needs before he gets overwhelmed. And when he starts to feel out of control, we are better able to help.
Hang in there–it does get better!
Robyn
(coolestmommy)
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Thanks for your comment. We’ve come so far, but SPD will always be there and always be a part of who he is, which, by the way, is not a bad thing but sometimes a challenge. Thanks for reading!
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