Fortunately for us, Charlie’s needs and height were suited to a piece of equipment that was already in-house. Normally the stander used has to be measured, ordered and made before use- 6 to 8 weeks later the instruction and Targeted Training (TT) can begin. With something there and ready to go meant we could go straight on to the business end of things!
Sarah spent a considerable time measuring Charlie and adjusting the stander to him. As she had identified his upper lumbar region as being the weakness spot, she set the upper part of the stander just below, around his pelvis. She then adjusted the foot plates and knee braces to keep Charlie’s legs straight and supported. To be fair, he wasn’t over keen initially (memories of the monkey stander no doubt!) but he soon realised that without needing to concentrate on his legs he was stood up tall and his upper body was free to move. He lifted his arms to reach high nicely and as Sarah tossed him a balloon he immediately stretched out and grabbed it! Seems a simple, silly thing but Charlie has never been physically organised enough to catch anything- as soon as something would come toward him his tone would shoot up and his whole body would stiffen and the likely result would be whatever was thrown would bounce off his chin or chest.
As Charlie’s body is supported in the frame it reduces the attention he needs to give to his body to keep it physically upright The support also increases his confidence in being upright and his high muscle tone reduces as a result. With more attention available for other tasks all-of-a-sudden Charlie had the ability to concentrate more on hand-eye-coordination and less tone meant his arms could react accordingly -CATCH!
Sarah showed us various activities to try but encouraged us to be creative and develop ways of keeping Charlie busy in his frame- so long as his arms and head were up it would help develop the strength in his back.
As Charlie develops the frame will be adjusted to allow increasing freedom of his torso which will lower the base of support, strengthening his core as he goes. As the frame does come down his body we may also find it helps his tight hamstrings as he actively stretches them while moving in the frame.
So fingers crossed, 20-30mins a day of activity may go somewhere toward improving Charlie’s postural control and help with those physical building blocks he needs to get him that extra bit of independence- who knows, it may even get him an his feet and walking a few more steps…?
All that was left that was to load up and drive home- we were exhausted. We will need to attend every couple of months and we certainly decided it was too much for 1 day- we’ll stay over and do Chester Zoo next time…