The boys accompanied their dad to Burnedale on the weekend. They had a perfectly splendid time, and if I am to believe all I am told about the outing, Hein-Chris spent amble time on the swings, apparently going as high as the laws of gravity, motion and (hopefully) common sense would allow.
I could but smile as they excitedly relayed the events of the day. I remember a time when such an excursion would have been impossible. Absolutely, unequivocally impossible.
Hein-Chris’ introduction to occupational therapy took place soon after his second birthday and around the time he started nursery school. He attended weekly, 45-minute sessions for the first year, and then twice weekly sessions the year after. He is now back to weekly, 45-minute sessions, and all indications are that these will continue for at least the next two to three years.
That’s the short version.
The reality of it was astonishingly different.
Hein-Chris’ introduction to occupational therapy can best be described as a horrifically hellish ordeal that ground him, me and (probably) his brilliant occupational therapist (OT), Kerry Evetts, down to our cores. As the mommy in this situation, I was gutted by the toll it took on my darling boy. It was frustrating. And heart-breaking. And very, very hard work. I was literally expecting the impossible from my precious two-year-old.
There quite literally was nothing about occupational therapy that sat well with Hein-Chris. And committing to it every single week, knowing full well how difficult he found it, was likely the biggest challenge I have had to face as a mommy.
Indeed, the first twelve months involved Kerry and I on the floor of the therapy room, Hein-Chris curled up behind my back, and every imaginable attempt to coax him into at least looking at the games and equipment Kerry would have on display. There would be glimmers of interest, but Hein-Chris was dictated by intense fear by no fault of his own.
Once again Sensory Processing Disorder (SPD) dug its hooks deep into my child’s psyche.
Week after week I sat there, watching, learning, my heart breaking as my child revealed just how seriously SPD had saturated every aspect of his existence. It was only really during these sessions that the scale of it was clearly visible.
It took a year for Kerry to fully gain Hein-Chris’ trust. It was only then that she would start the actual process of sensory integration in a meaningful way.
Swinging was a large part of the decided intervention. Hein-Chris could not tolerate swinging at all. In our case, Hein-Chris’ vestibular system was hugely compromised and extremely immature. It took almost two years to get him used to the variety of swings used during occupational therapy - swings that posed a huge challenge to his vestibular system. We found, however, that once his vestibular system matured and the anxiety associated with movement subsided, all his other senses followed suite, and sensory defensiveness started a slow, universal decline. Tactile defensiveness (touch), auditory sensitivities (ears), fear of unfamiliar places and situations, and sensitivity to light and smells (eyes and nose), all seemed to improve markedly. My child’s vestibular system was the portal to the rest of his senses.
Help your child’s OT, in whichever manner, to get that vestibular system working properly. If the OT recommends a home-based programme in conjunction with weekly or bi-weekly occupational therapy sessions, make sure to follow it religiously.
Once Hein-Chris tolerated short stints of swinging at a time, it was decided that I would no longer sit inside the therapy room, and Kerry created the first social story I had ever come across. She made a lovely, 5-page booklet with photos of her rooms and all the fun activities therein, and I was tasked with reading this to Hein-Chris as often as possible. Within about six weeks, Hein-Chris allowed me to wait outside in the reception area while he attended his session.
I can still remember relishing the divine coaches I could relax in after so many, many months of sitting on the floor until my back broke and I was aching all over.
It was around that time that Hein-Chris started twice-weekly sessions with Kerry. Every Tuesday. Every Thursday. Remember that Hein-Chris was at nursery school, so I would fetch him just before 10am, race to Kerry’s, sit and wait for 45 minutes, race back to nursery school at 11am, and then again at 12pm to collect him. All this for three and a half years.
Hein-Chris was making progress slowly but surely. Of course, the results were not earth shattering by any stretch of the imagination (at first), but we celebrated when Hein-Chris took a first try on the trapeze swing and crashed onto a soft pillow. That was huge. And the first time he touched saving cream. And the first time he swung on the boat swing for more than three seconds. And the first time he twirled on the froggy swing. And the fist time he put an entire hand into a bowl of water beads. Seemingly small, small victories were indeed major accomplishments. All this would take two and a half years to accomplish. Hein-Chris was a star, and we were extremely proud.
I would say I started seeing huge improvements by the time Hein-Chris was going on to five. It was as though all the years of occupational therapy clicked, and a little boy emerged who no longer cringed at every sensation. He was literally making progress during sessions every week. Kerry had cracked the code, and she had enticed Hein-Chris out from under the weight of SPD.
Occupational therapy is hands down the most effective treatment for SPD - provided the OT is trained and experienced in the field of sensory integration. From my experience, occupational therapy is not a quick fix. The magic of occupational therapy happens gradually over many years (if your child has severe SPD like mine), but once it takes effect, the results are astounding.
We were close to calling it quits a vast number of times. But Hein-Chris’ neurodevelopmental paediatrician was (frustratingly) adamant that Hein-Chris was not to miss a single occupational therapy session. And it paid off. Hein-Chris journeyed a world away from his infant self, and I am convinced that occupational therapy played the most important role in his transformation.
A year ago, Hein-Chris transferred to a school that allows visiting OTs. He attends all his sessions during school hours now. I became free of weekly trips to the treatment centre. After three and a half years I found myself in a space where my entire week did not revolve around trips to the OT and waiting my life away in the reception area.
Hein-Chris cannot remember all of this. He thinks occupational therapy is the best thing since Lego City’s 60104 Airport Passenger Terminal. I haven’t checked with Kerry, but I am sure both of us would do it all over again given the choice. Our boy has blossomed. And he loves swinging. Our work is done.