05.12.16
Our daughter’s new standing frame has finally arrived after long delays while funding was agreed. It’s a simple to use piece of kit: our daughter sits in a chair, places her feet in footplates where they are secured with velcro fastenings, and she is is attached to the frame by means of a strap around her hips. She can then be levered to a standing position comfortable to her and which is perfectly safe and secure.
She is now able to stretch her legs and allow her internal organs to be properly aligned with gravity. She’s more alert and engaged. And as she stands she is at the same level as the people around her, not looking up at them as she usually has to do from her chair or the floor. What a great position to be in at last. Standing tall. It is fantastic that this equipment, specially adapted for her, can promote her physical and mental wellbeing in such a simple yet effective way.
She uses it every day for periods lasting anything from fifteen minutes to three quarters of an hour depending on how she is feeling. We’re building the time up gradually. Sometimes she watches a dvd while standing. At other times she plays with favourite objects or looks at her picture books as we read stories to her. She really focuses on what she’s doing.
Yesterday was crisp, bright and sunny. The light outside was stunning across the trees. We set the stander facing the window so that she could appreciate the view in anticipation of going out later. She was having none of it though and looked away determinedly at the tv screen. Landscape doesn’t mean much to her. She knows what she wants.
One of the first things we were told when it was clear that our daughter had learning and physical disabilities was that she would need lots of physiotherapy. During her pre school years we took her to a weekly group where parents and carers were taught how to instil patterns of movements into their little ones. Every child was different and although on the face of it ours looked the healthiest, ultimately she was amongst those who struggled the most to achieve what was required of them. She would give bright smiles while doing very little indeed.
The sessions were purposeful, challenging and playful. How well we remember singing “Standing tall, standing tall, xxx is standing tall” every week. That song comes back and back.
Our girl has never walked independently and as she’s got older her knees have become more flexed, making it harder for her to keep upright for any length of time. She’s had her physio in fits and starts over the years depending on setting and circumstance, but we’ve always tried to provide some kind of physical therapy input for her by whatever means we could employ.
We’ve met all sorts of alternative therapists along the way and tried weird and wonderful things in search of the magic that would help her stand and ultimately walk. Magnets, muscles, massage. Splints, supplements, stretches. You name it. Many a time she has been treated while on the move, on the floor, or half-on and half-off a couch.
Our daughter will tolerate only so much interference. The standing frame, by keeping her still and upright, gives her an indoor perspective on life that she would not otherwise have. And she doesn’t have to be handled or manoeuvred once she is in it. To an outsider it may look like a forbidding piece of equipment, but to us and her it’s just a jolly good thing.
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