Tag Archive for: Sensory Processing Disorder

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.

Have I mentioned that Lola is unusually perceptive? Among her most unique senses is the extraordinary sense of smell she has, which is often a trial to her. She can smell things most human beings can’t and she has a wonderful way of describing them to me – the mere mortal who doesn’t possess this ability.

This morning she informed me that every person has their own smell. This isn’t exactly a new idea, right? I can remember going in to my grandmother’s bedroom and being overwhelmed by her Estee Lauder perfume and the smell of mothballs. But what Lola is talking about is their very essence, their aura, if you will. Even if you switch from Estee Lauder to Calvin Klein’s Obsession, Lola will still suss out your scent and notice that it is the same.
“But,” she admonishes, “sometimes the smell changes a little bit. Like if you’re really upset. When Abigail is upset (Lola’s best friend) she smells a little bit sour on top of her normal sunflowers and clean laundry smell.”
Apparently the dog smells like fur and lemon kisses “which is a very good smell, almost the best,” my mother-in-law smells like light perfume and my mother has the essence of apple pie. It may sound ridiculous, but when Lola explains it, I can get the sense of it exactly. The way she experiences each of them, this is exactly what they feel like. I’m convinced she knows.
“Did Papa have his own smell, too?” I ask, hesitating. She only knew him for six years and he was pretty sick for the last year of that.
“Yup. He smelled like warm chocolate and blankets. And when he was sick it was still there, but with a little sad thrown in.”
She is absolutely right. That is what my dad smelled like as her grandfather. She is so dead-on with her assessments that I didn’t dare ask what she thinks her sister smells like. Or me, for that matter. I’m not sure I want to know…

The gifts just keep on coming this week. It’s a busy one, with the beginning of the school year and Eve and I both adjusting to the rhythms of a new school, so I will share with you the quick-and-dirty list of lovely things the Universe has flung my way recently.

  • Last Wednesday, my sister-in-law called to invite us to go camping with her and her kids for two days before their school year started. For some reason, we accepted on a whim and spent two glorious days walking in the woods, swimming, floating the river and meeting two other families who have kids with special needs. What a lovely, fun way to see these kids – outside a classroom, riding bikes and talking on walkie-talkies and sitting down with mothers of other kids with sensory processing issues. They get it. Lola and I shared an innertube and bounced and rocked our way down the river and saw a juvenile bald eagle, two vultures and a great blue heron along the way.
  • When we got home, we learned that our bear is back. The one who visited our backyard nearly every night between September and February last year paid us another visit over the weekend and, while he wreaked havoc on my birdfeeders and the compost bin and left me some enormous piles of bear poo, I am so excited to have this gentle giant wandering through my back lawn again. Rather than frightening me, it makes me feel safe and relaxed to know that my yard is a haven for this amazing creature. I suppose I would feel differently if he wasn’t nocturnal!
  • On Monday I had a phone interview with a small publisher in Montana who may or may not be able to help me, but for nearly an hour we talked writing and publishing and it didn’t take us long to figure out that she knows Bubba from a previous job and the teeny tiny town she lives in in Montana is the same one where my favorite aunt and her husband live.
  • With Bubba out of town for three days, I managed to get both girls to and from school and their various activities with no hiccups, despite the fact that it is a logistical labyrinth. We did it! And in the process, I have met some lovely people who are willing to help us out whenever they can – I need only ask.
  • On Tuesday I started a class with four other women (total strangers) on positive intention. The four of us immediately bonded and one of the participants brought copies of her book to distribute at the end of class. She gave me her phone number and encouraged me to contact her if I want to talk about publishing my own book.
  • The teacher of this class sends daily emails to ‘check in’ with our progress and remind us to engage in certain exercises she taught us on Tuesday. We are all encouraged to dialogue (through email) about our experiences and the feedback she has provided so far has been amazing. I feel physically lighter.
Next, I am going to the post office to send out a packet of information on my book to a publisher that was recommended to me. I spent yesterday polishing it, filling it with positive intention and sitting with it. Today, it heads out surrounded by golden light and the knowledge that the manuscript is better than good enough.
Have a lovely weekend!