Summertime with SPD
That is, Sensory Processing Disorder. (Don’t get me started on the name. That’s another rant/post.)
Suffice it to say that Lola deals with SPD – much of the time graciously and with a large measure of acceptance, other times not so much. And much of her life is structured so that she doesn’t have to head butt the enormous invisible beast that taunts her. She has teachers who “get it” and encourage her to work in the way that suits her best. She has pared her wardrobe down to several choice items that, while they don’t allow for much variety, enable her to move through the world without feeling constantly stimulated and irritated. She has plenty of opportunities for physical activity – playing sports and riding bikes and wrestling with Bubba. Her routine, during the school year, is predictable and, when it isn’t, we are sure to accommodate with extra down time and soothing routines.
And then summer hits. And the first few days are bliss. It’s like a long weekend and so long as I make sure she eats every couple of hours to keep her blood sugar up, she is enthusiastic and cheerful.
Go beyond a few days without structure, add in a week-long trip to the mountains, follow that up with a morning sports camp and a sister with an entirely different agenda than her and we’ve got a perfect storm of SPD triggers. She starts to assert that she ISN’T HUNGRY and asks to stay up late reading and slowly begins to disintegrate into someone who turns to mush for no reason at all. The last few days have brought more tears and hysterical outbursts and agitation than we’ve had in the last nine months put together.
And there is a twin crumbling going on inside my head. The small but hopeful, insulated, pretty-in-pink place where I had harbored a hope I was afraid to admit to myself. The hope that she had “outgrown” SPD or that we had been hasty in diagnosing it. The hope that she had come to manage it so well that she had folded those “quirks” inside of her personality the way a tree grows around a wire over time. That SPD had just become part of who she is and she could either wall it off as a separate but alien piece of herself or make friends with it and entirely disarm it.
Instead, summer is here, stripping away my denial. And so the next few days will require me to steel my resolve and re-engineer some boundaries that have fallen away with the end of the school year. Lola admitted to me last night that she is raw, over-reactive, edgy. She is apologetic and contrite in moments of calm, but utterly inconsolable and manic when agitated. I know that it is impossible for me to predict and systematically eradicate everything that could possibly set her off, and I’m not even sure it is wise to try. I do want to allow her to let her true personality shine through, though. This Lola, who is so funny and compassionate and possesses such wisdom about herself and others deserves to shine.
Hi Kario,
I know nothing of SPD, but what you describe is something I've seen in students I have, and my daughter, who is ADD, has similar issues. It isn't easy being Mom! As a teacher, I know what havoc summer can bring for many kids who can fall apart without the comforting structure the school year brings.
It sounds like you have a strong handle on what you need to do to help Lola cope, and that she has a good awareness of how to help herself.
I hope the rest of the summer allows you both many moments of peace and connectedness.
I always enjoy reading your posts!
Your daughter is so lucky to have you for a mom. Sending prayers your way – that you find ways to add structure and still enjoy the freedoms of summer.
Denial is killer, and not one single one of us is immune to it.
Love you.
I know you will figure out what she needs and give it to her. Bless her heart. And yours.