For an average child, someone else’s light touch on their skin would go almost unnoticed. But, for a child with Sensory Processing Disorder, or SPD, any sensory stimulation not invited or prepared for can be overwhelming and even painful to endure.
My six-year-old daughter, Jaimie’s, form of SPD affects all of her sensory systems—from moderately to severely so—and even a simple act of affection is enough to send her into the throws of a meltdown. To illustrate, when Jaimie was about two-and-a-half, Jordhan, her ten-month old sister, had developed a normal curiosity for everything her big sister did. One afternoon as Jaimie played preschool games on the computer, Jordhan pulled herself to stand, her hands resting on my leg, to watch Jaimie play.
That day Jaimie craved stimulation so the room echoed with noise—television blasting, Wiggles playing on the stereo, and her computer game beeping. Jaimie’s eyes quickly scanned around the room every few seconds, but amazingly, she was still able to concentrate on her game. Then it happened: Jordhan’s hand slipped onto Jaimie’s leg.
Jordhan’s light touch caused Jaimie’s breathing to get more and more rapid until she was almost hyperventilating. After a moment, Jaimie stuck her face right down into Jordhan’s.
“No touch me, Jordy. Get off!” Jaimie screeched, then shoved Jordhan, knocking her on her back.
As I tried telling Jaimie not to yell at or push Jordhan, she threw the computer mouse, ran over to the couch and released a long scream, holding her leg as if Jordhan’s touch scalded her. I’d learned from experience not to touch her as it only seemed to intensify her reaction. With tears in my eyes and pain in my heart, I watched Jaimie beat her head into the couch cushion repeatedly. Through Jaimie’s muffled sobbing, she uttered a faint, “Mama…help me.”
That was a regular scene in our house. When Jaimie’s behavior worsened to the point she’d be having fits for hours at a time every day, we were finally directed to an Early Intervention Program. After only one home visit, an Occupational Therapist (OT) named Donna Gervais was able to deduce Jaimie’s behaviour to SPD.
“Most of us have the ability to tune things out in our environment so we aren’t bombarded with sensory information,” Gervais said. “We don’t listen to the squeaks, creaks, bumps or other weird noises going on everywhere around us; we don’t smell every stinky or nice smell in our house, and we try to focus on what is in front of us so we aren’t distracted. Kids like Jaimie are incapable of this ‘filtering ability’”.
With this realization I knew Jaimie heard every sound; smelled every smell and saw everything because she’s not able to tune anything out. Imagine how terrifying it would be to have to take in all that information but not know what to do with it! I get upset if the phone rings while my youngest daughter Sophie screams, the older children run around me asking for different things and the microwave all go off at the same time. No wonder Jaimie had such terrible breakdowns.
Even though I knew Jaimie needed outside help, to be honest, I was very nervous about allowing an “outsider” to interact with Jaimie. It could take up to a week for her to get over the stimulation from her therapy sessions and there were so many times I just wanted to throw in the towel, screaming, “Enough! I can’t stand watching my baby screaming and crying. I’ll take care of her on my own like I always have.” But, in my heart, I knew this wasn’t true.
What I’d been doing before Donna’s arrival wasn’t truly helping, though. Jaimie needed her system to experience sensations so she’d learn how to cope within the outside world. What I’d always done was allowed Jaimie to avoid what bothered her. How was that going to help her learn how to function? She wouldn’t have been able to enter and manipulate every environment to her comfort level the way I’d always done for her. But, at the same time, certain things could be tweaked so she’d feel better about trying.
Donna’s method of sensory integration therapy—teaching children how to cope with the information their brains aren’t able to process—was working within a child’s comfort zones and interests. For example, she understood Jaimie’s rigidity to changes in her routine and her immense struggles with transition. (When we moved from an apartment to a two-bedroom townhouse, for example, Jaimie not only needed to have her room set up exactly the same, but, it took her nearly a year just to get used to our new place. She became so anxious if I’d simply moved things around to clean around them—thinking we were moving again—she’d melt down.) But Jaimie also loved drawing, reading and crafting and Donna used these interests in the therapy process.
Jaimie had to slowly get used to someone working with her so we had chosen at-home therapy at first. Donna brought a new, fun, sensory-rich craft (Jaimie’s favorite activity) and a book to read afterwards (the best activity for calming her) for each visit.
Donna also worked with Jaimie’s need for consistency and routine by coming on the same day every week, at the same time, with the same over-sized bag Jaimie knew was filled with fun stuff to do. The plan was brilliant. In addition to Jaimie’s SPD, which was quite severe in her younger years, she also suffered with high anxiety. So the activities Donna tried kept both of these struggles in mind: stimulating her sensory systems but also providing Jaimie options to help calm her anxiety to reduce a meltdown.
Some activities Donna used included:
- Sensory rich crafts, such as cut and pastes with various textured materials, pompoms, feathers, sparkles, scented markers and other objects for her to “feel.” Jaimie was, and still is, highly tactile-sensitive and avoids many sensations.
- Scratch and Sniff books. Jaimie didn’t always like these books, depending on the smell. She’s also highly olfactory-sensitive.
- Scented and non-scented PlayDoh to stimulate Jaimie’s fine motor skills, tactile and olfactory. Donna also used this as a way to help Jaimie to “squeeze” out her anxiety/frustration.
- Got Jaimie to use finger crayons (crayons that slip onto the ends of her fingers.) Jaimie didn’t like anything on her hands or fingers but tried it out occasionally.
- “Squished” Jaimie. Donna sat on the couch with Jaimie behind her then squished into her. This sort of deep pressure made Jaimie actually feel better when she was up. We still use this method.
- Got Jaimie to do activities like crazy dancing, rolling on a yoga ball, jumping on a mini tramp or air mattress, run around the room or spin. These are all activities Jaimie loved but aren’t always safe or appropriate to do. Donna used these things after Jaimie did the more sensory activities to release her anxiety. This taught Jaimie to exert, rather than introvert and lash out, hurt herself or meltdown.
- Jaimie was also very oral so Donna gave Jaimie things like chewy tubes, straws and suggested giving her crunchy snacks when she sought such stimulation. (Jaimie has always been more on the avoiding side of SPD but does seek once in awhile, especially with smell and orally.)
- Taught Jaimie to say things like, “Help, please,” “Too close,” or “Yuck smell.” so we’d understand when something around her bothered her. It was like staying one step ahead of her meltdowns.
- Taught us strategies to help Jaimie through necessary hygiene activities, such as teeth or hair brushing, bathtime and getting dressed. Things like allowing Jaimie to help choose her clothes or getting her to brush her own teeth seemed to make her feel better because the task was then being done the way she was comfortable with.
As much help as Donna was—from giving us a name for Jaimie’s struggles, to teaching all of us better ways of coping with it, to being a strong resource of information all the way to providing connections to other services Jaimie desperately needed—we had to end sessions with Donna after about a year. Jaimie got so far in her therapy, then regressed back to the point she was at even before beginning with Donna (Regression in therapy is something we still struggle with to this day.)
Despite having to end OT sessions with Donna, however, our family had become so much more enriched having had her there for a little while. Without her we’d never have gotten to where we are today in terms of resources, coping methods and strength. And wed still have a little girl still terrified of what waited for her outside our front door with no desire to find out. Jaimie may still be anxious and nervous about the new and still easily overly stimulated but she tries and I’m so grateful to Donna for that. That experience makes me less nervous for when OTs will be working with Jaimie during the next school year, and most likely, the rest of her young life.
At this stage, it’s still tiring, frustrating and a daily struggle coping with Jaimie’s SPD. But, little positive changes have shone through. Near Christmas of 2007, I received the best present from Jaimie I’d ever had or will ever receive: She ran across the room, wrapped her tiny arms around my neck and gave me a hug—a real hug, not just merely placing her head on me and saying, “Hug!”—and said, “I love you, Mama.”
I can count on one hand how many times she’s allowed herself to do it again but I hold onto that one hug, knowing what we’re doing is reaching her, even if we can’t always see it. It gives me hope.
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