Do you ever marvel at your ability to walk? The way you lift up one foot and then the other and move smoothly forwards, without thinking about it, collapsing or falling over - well usually. Most of us take this for granted, unless we are - or become - disabled. More than anything else, walking gives us freedom. To do what we want and go where we want, on our own and at our whim. Not being able to walk makes you dependent, on people and technology.
Of all Smiley's problems, the one question that most people ask about is 'will she walk?" And the answer is: yes she can!
She has always been able to walk, it's just that she needs help. As a toddler I would hold her up and her little legs would do exactly what legs are supposed to do, except that she would fall if I let go as her knees would buckle. There's no strength in those joints and her legs are not straight.
I tried her in a baby walker. She looked really cute, but could only stand in it. Occupational therapists and physiotherapists tried out different equipment, most of it complicated and ugly. Then one of them found this.
It was one of the happiest days of my life when I finally saw Smiley walking and smiling, happy and free :D I know I've used this photo before but it is just perfect.
You see, I am convinced that walking - even with help - is very very good for Smiley, physically, mentally and socially. I know it helps to stop the constipation and I'm sure it has other medical benefits: because people are meant to walk. Walking also makes her equal to other children, she's no longer the one in the chair who just watches and waits to be included. This made a huge difference at the Rainbow Junior Arch Club where she used to toddle around the gym hall following the other children, laughing and smiling, and part of the gang.
In her walker she gets the chance to be mischievous, which the school has encouraged (under supervision obviously) by leaving the classroom door open to see what she will do and where she will go. One Christmas she headed straight for the school Christmas Tree and was found giggling under the branches as she played with the shiny baubles. She also delivers messages by walker at school - with a guiding hand as her steering can be a little suspect!
But about four years ago she started to grow... and grow... and grow. She was wearing toddler clothes. Now she needs adult sizes. The growth spurt has resulted in physical changes too, including contractures and windsweeping and she struggles to manage many of the skills I helped her to develop: sitting unaided, crawling on her tummy, even rolling over. She is also now too big for her walker. A replacement has been trialled in school for the last number of months, but she no longer flies around the place. At home she doesn't bother with the walker, and some weeks it felt pointless to drag it up to the Club. Last week it took three of us to lift her out of the buggy and position her carefully into it and ready to go: And what happened? She scrunched up her hands and her head hung down. He shoulders hunched and her feet stayed still. Was this the end of Smiley walking? Well I don't give up easily and last Saturday I brought the walker again. This time it was like I had a different child.
And here is the proof of how much she loves it, with me encouraging her, *cringes at sound of own voice*. This video is a few months old, but you get the idea: