When William was an infant, we started early intervention after being warned by professionals that children with Dystonic Cerebral Palsy can develop a variety of different issues that require surgical intervention. Our early intervention program included Occupational Therapy (OT) and Physiotherapy (PT). It wasn’t long before we added Speech Therapy to help us with feeding as well. At that time, I had no idea what we were doing or how much of it was beneficial.

When William started Kindergarten we continued with all of the therapies. Our daily routine included lots of speech language work with development of using an eye-gaze system. Our OT evaluates William every few months and makes suggestions and modifications for equipment and positioning. We introduced a new physiotherapist who comes to our home weekly. She works with me and William’s caregivers to make sure we can provide effective physiotherapy daily. She shows how to properly manipulate William to keep him as mobile as possible. We pay close attention to his hips, spine, wrists and legs.

In my experience, seeing William develop with Dystonic Cerebral Palsy, I feel that physiotherapy is the single most valuable thing we do for him. There are days that William is pumped for physio and other days when he is napping. Either way, we find a way to incorporate physio into his day.

If he is sleeping, our therapist takes him through an extensive full body stretch. With dystonia, the tone appears only when William is awake. When he is asleep, he is relaxed and calm. Physio sessions during a nap are often more beneficial than when he’s awake. The therapist can really assess William’s range of motion, she can get nice, long, deep stretches and he wakes up more ready for his day in different pieces of equipment.

On days when William is actively participating, we have big mats that we lay out and different pieces of equipment that engage him and his muscles. These days allow for a more playful and active session. He practices rolling over, side lying, tummy time and positions that require yoga balls, peanut shaped blow-ups and wedges.

Every second Friday we do aquatherapy with William as well. The same therapist comes and supports our learning in the water. Doing therapy in the water has been an amazing way to break up the monotony of physiotherapy and William reaps so many benefits – enjoyment, muscle relaxation, energy exertion, exercise, and play. He can even do therapy in the pool with his sisters.

Between the caregivers, my husband, Bear and myself, William gets physiotherapy at least once per day. The sessions are at least 45 minutes long and have been tailored to fit his specific needs. The time we put into physio has paid off with William’s range of motion remaining within a normal range, we have avoided any signs of scoliosis and he continues to progress slowly with his motor control.
Avoiding surgical intervention was my goal for all these years and it continues to be the goal as we navigate through growth and hormonal changes – challenge accepted!

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.