Last night, for the first time, my children played together in the bath. Properly played. Splashing each other, laughing together, shrieking, playing with toys. A very normal evening scene in many households I would say. But until now, bath time has not been like that in our house. The Beep has had to play alone, while Orange gets whisked in and out, washed as quickly as I can manage with one hand while trying to hold his slippery, writhing body with the other, leaning precariously over the bath and hoping my hand doesn’t slip or my back give way. Until now, he’s never really enjoyed a proper soak. He loves to be in water. But it was getting increasingly difficult to let him bath safely. He is heavy now but cannot sit up or support his own body weight. I felt so sad for him that this lovely little childhood routine wasn’t really a part of his life. Nothing more than a quick, business like dip, scrub and a wipe and he was out of the water again in under a minute.
All that changed with the arrival of his (much fought for) bath chair, The Otter, an absolutely brilliant piece of kit. I used to think that having specialist equipment in our home would make me feel sad, like our lives were being taken over by Orange’s disabilities, and that the presence of bath chairs, specialist seating or standing frames would somehow deplete the sanctity of our home and render it little more than a makeshift hospital. I realise now that I was quite wrong. Instead, the bath chair has brought back a little normality. Enabled us to do things the way ‘normal’ families do. Seeing my children playing together in the bath so happily and sweetly made me realise that far from just helping to keep Orange safe in the water and to save my back, this little chair has opened up a whole new world of play and fun for Orange and Beep. They played and fought like brother and sister. This, this is what I was hoping for when we decided to have a second child. Their blossoming little sibling relationship is the sweetest thing. But with Orange able to do so little, Beep doesn’t get an awful lot back for all her trying. She has been so desperate to play with him properly in the bath, wash his hair, sing songs, splash and muck about. The joy on her face was unbridled as she sat opposite him in the water, for the first time and they shared a secret joke beneath the bubbles.
What is hard to get to grips with, given how life changing one piece of equipment can be, is how difficult it is to get the right kit in the first place. Many families with a child who has disabilities will tell you how bewildering the early years can be. Adjusting expectations, dealing with emotions and taking on challenges that you never imagined facing. I know from my own experience that while processing and managing all of this new stuff, there isn’t much time or head space left for thinking about things like what sort of chair your child should be sitting in, let alone grappling with the authorities to try and get what you need. We have struggled on for months longer than we should without any specialist equipment at all, partly because I had no idea what was available and partly because it’s so inexplicably hard to get The Professionals to provide it.
Budgets are what they are, but some of the reasons we were given for not being given a bath seat were daft. “He’s under two” and “but social services have to provide it, and you’re not known to social services” were two of my particular favourites. Especially when I knew, via the Professional grapevine, that there was an unused bath seat sitting in a cupboard in an office two miles down the road.
No, what I really needed was someone kind, patient and knowledgable to come to our home, talk through our typical day and discuss gently and openly what type of equipment might help us to manage our days a little more easily. To show me pictures, catalogues, information, to enable us to actually understand what is (potentially) available to us, either for us to ask for from the authorities, raise the money ourselves to buy, or submit an application for a charity grant if the items were unavailable or unaffordable to us. But I don’t know one parent who has been offered this kind of help. Instead we sort of flounder about, catching glimpses of what other families have via their blogs or facebook pages, and wondering where they got it from.
I came across a brilliant website yesterday while searching for ramps and lifts for our new home which, in the absence of my fantasy home adaptation consultant, is quite a good second best. It has an interactive house tool that allows you to explore all the different rooms of a typical family home and highlights all the equipment that is relevant to each part of family life. They also go on tour, doing an annual expo of just about every piece of specialist kit you can imagine. The next one down south isn’t until next summer, but you can sure we will be there, trying stuff out, asking questions, figuring out what Orange needs next…