THIS is what happens. And please don't look away. Disability may not be relevant to you today, but that can change in a heartbeat. Tomorrow you or someone you love could be facing the challenges that are faced daily by my special girl with bravery and usually with a smile on her face. But not in this picture.
Most of the equipment that I have to help her with daily living was prescribed at least 5 years ago, when she was much smaller than she is today. Perhaps I should pay for it with all the cutbacks? Yes, perhaps I should, but getting the right equipment is not as simple as it sounds. You see I can't just pop down to my local disability shop - have you ever seen one? - because my daughter's needs are so specific that I need specialist help to find the right equipment.
It need to be comfortable and safe for her, and functional, and easy to use and clean for me. Today there was another home visit by her new occupational therapist, and yet another supplier went away without an order. The equipment he brought just wasn't going to work, for lots of reasons:
...The bathroom is too small
...Her legs are too short
...Her body is too bendy
...The equipment is very expensive
Smiley is special, even among teenagers with special needs. She just doesn't fit standard special needs equipment. Yet any time I imagine something that might work, it doesn't exist. A shower trolley that folds up for ease of storage, like a sun lounger. Nope, no-one makes them. A fully supportive shower chair that reclines and tilts in space so that I can clean Smiley thoroughly. Can't find anything like that either. A suitable vest sling that I don't have to keep taking off and then wrestling with her to put it back on every time I need to move her? Ah, now that might be possible.... Funny that even google can't provide images though.
But how long will it take to get? How long will my special girl have to suffer the indignity of almost falling out of equipment that just doesn't work any more? Or will she be just another victim of the cutbacks?