This September, a soon to be five-year-old Olivia will leave The Early Intervention programme. The natural next step for most families, with a child with significant physical disabilities, is to then begin transitioning their child from a home-based therapy programme to a special needs school. Luckily we have chosen a school (which we’ve just received our confirmation) where all therapy takes places during education hours. Including hydrotherapy!
Our lives are primarily spent with intervention, we’re either at home having physiotherapy, nursery having occupational & sensory therapy or at the hospital having speech therapy. Having MRI scans, EEG tests, GI & paediatrician meetings or having appointments for impending surgery. Our lives have been taken over by cerebral palsy. So it will be nice not worrying about that at home, being able to enjoy Olivia.
On the one hand, it is wonderful we live in a country so generous with services. We also cannot discount how much Olivia enjoys the touch, sounds, and overall attention she receives during sessions with our dedicated team of therapists. But then add to the many therapy sessions: nurse visits, equipment vendor meetings and visits, doctor appointments, and the occasional night or two in the hospital. It is a lot to juggle and it can be hard on Olivia and our home life in general. Our therapists are wonderful and dedicated to their work, but I sometimes question what it is, exactly, that we are all working towards. And at what price?
Over the years my personal goals & expectations for Olivia have shifted greatly.
Having a child who is as disabled as Olivia brings a level of clarity when these questions arise. “How can we get Olivia to walk, talk, and eat by mouth?” to “How can Olivia best experience love and life?” Therapy will always have a place in our lives. It is incredibly important that Olivia is continually stretched, bearing weight, and encouraged to move, but it will not be a centrepiece.
As soon as Olivia begins school and receives daily therapy we will concentrate on bringing the world to Olivia and sensory rich days. Lots of cuddles and days out as a family.