19.09.18

Our daughter likes nothing better than a good bounce on her gym ball whilst watching videos featuring her favourite girl bands, animal sneezes or clips from tv programmes past and present. The choice is endless thanks to the wonders of YouTube. Her current preference is anything by Dua Lipa. The costumes, choreography, rhythm. Or is that she she looks a little like one of her PAs?

Sometimes one of us sits beside her on another ball and we bounce together in harmony. Up and down we go in time to the music, fast and slow, according to the beat, according to the level of excitement the particular clip elicits from her. Sometimes we simply sit and watch. Bouncing is fun and invigorating, good for the core. It gets the adrenalin flowing. It can also be very calming, therapeutic.

When she was tiny our girl didn’t really move at all. In fact she only learned to sit up at two and a half. We still look at photos of her in her special “sitting ring” surrounded by toys to keep her stimulated and focused. Oh, the hours and days she spent in that. She had a little corner seat as well, designed to hold her up and stop her slumping sideways, a pommel fitted to keep her upright.

While investigations were carried out to establish her likely condition, we were advised that physiotherapy would be key in enhancing her wellbeing and development. We were told it would need lifelong commitment.

We tried many things we thought might help with her coordination, balance, strength and mobility. We’ve always given it our best shot. Early experiences we gave her included lying her over a large ball while we held on to her back, gently supporting her as we slowly rolled her round this way and that to give her the experience of movement that would be so important for any independent mobility she might acquire later on.

She also had weekly hydrotherapy and horse riding (hippotherapy) in those early years. She loved being in the water but hated the riding at first. She would lie back on her horse as it walked round the field, one helper leading and two more on either side to support her, and she’d yell and yell. It was hard to watch.  Then gradually she leant to sit up and get her balance as, like with the ball, the motion of the horse opened up senses she didn’t know she had. It seemed like a miracle.

The physiotherapy continues to this day although there have been short breaks when no professional input was available. Her current physio has known our daughter since college days and has seen her learn new skills and gain in confidence, especially in the last couple of years or so with a team of PAs who are actively involved in supporting her with her mobility and independence skills.  It’s great to share the load.

Now she sits unaided on her ball with no need of us to steady her. We stay close by just in case, but she’s learnt to slide down to the floor when she’s had enough. She’s come a long way from those early days of not doing very much.

We are on holiday and staying in a remote cottage. Internet access isn’t brilliant so music videos are not an option. In any case we haven’t brought the ball this time. There’s a trampoline in the garden.