It would be very easy indeed to completely fill the calendar with therapy appointments for Orange. On top of all the hospital appointments, which are running at the rate of between one and three a week, he now has weekly physio, Portage (play therapy), twice weekly visits from his support workers, plus regular occupational therapy and speech and language therapy assessments, reviews and therapy sessions. It’s already a fairly hefty schedule for a boy who isn’t even two.
But with a child like Orange there is always that temptation to do more. Teaching him to do new things is very, very hard work. It took a year to teach him to sit. He needs a massive amount of input and if he doesn’t get it, he doesn’t develop, simple as that. And at his age, the brain is still very ‘plastic’ so there is a looming urgency to try anything and everything that might set him on a path to a more fulfilling, independent life.
Private physio, SALT and OT, hydrotherapy, specialist therapy programmes like Bibic and Brainwave, special needs playgroups, alternative therapies, music therapy, Bobath therapy, cranial osteopathy, the Feldenkrais method… There is a vast array of private therapies on offer and many a child like Orange has benefitted from one or all of these. I know I can’t give Orange everything on that list, it would be daft to try because it’s just me managing all this stuff and there aren’t enough hours in the day or funds in the bank to do so, but I dearly wish I could do at least some of it. He gains so much from therapy, every time I hear about how wonderful Bibic is or how another child has come on leaps and bounds since seeing a private OT I am momentarily lost in guilt and the shame of failure that I can’t make these things happen for Orange without time and money that, at least right now, I don’t have.
Playing the ‘what if?’ game is dangerous but if we had bottomless resources (or, ironically, less resources – because we earn over the threshold for any kind of funding or support from charities), we’d be able to do more of the things that Orange benefits from but that aren’t covered by NHS or council funding. If there were more hours in the day, or more pairs of hands, Orange could have more of what he needs.
Are we letting him down by not pushing ourselves and those around us harder to make these things happen? Private therapies rivalling most families monthly food bill, pieces of equipment that cost more than the average engagement ring, the list is endless as to what we could pursue on Orange’s behalf. I know we need to do some of it but I have seen parents push themselves to beyond breaking point with multiple private therapies for their child and, given that we don’t know how long we have Orange with us, the one thing I am sure of is that I don’t want his experience of life to be solely about working towards the next developmental milestone that he may or may not reach. He is a happy, delightful, joyous little boy who, really, is having a pretty damn good time enjoying being alive and, while I don’t doubt the impact that therapy can have on his ability to access his world, I want to keep things that way. Happy, relaxed, free.
Even while getting all chewed up inside about what might or might not be the magic therapy that could work wonders for Orange, life is also about balance, and Orange also needs to have the common or garden experience of just being a kid. More than that, we as a family also need to have a normal, everyday life. More days on the beach than in the hospital. As many days spent in pyjamas, singing silly songs and watching nonsense on the telly as spent working our way through Orange’s development programmes. I am also pretty clear now about my own abilities to manage being his permanent home therapist. It’s exhausting and emotionally draining doing the same things every day with your own child, over and over, and not knowing how much of it they will ever learn. I just want to be his mum too. Mum first, therapist/nurse/doctor second.
There is a definite limit on how much we, as a family, can dedicate our lives to therapy for Orange. We haven’t got it right yet, I know that much, we are still chasing the elusive work/life balance in many ways. Trying to maintain focus on Orange’s needs while remembering that we’re a normal family, too.