I wrote a letter in January to a man; he is the head of servies at the local wheelchair services and rehabilitation centre. In essence I was asking him to meet Eilidh and help us maintain her independence, but core to this letter was also my want to allow others in a similar situation to gain their whizzy wheels quickly so that they could be as mobile as possible at an early age:
"Eilidh has a neuromuscular condition which does not affect her intellect or her cognition. Eilidh is like many other children with SMA and other neuromuscular conditions and can use equipment that some disabled wheelchair users may not be able to use and at an early age when they would naturally be becoming mobile. Mobility is an extremely important element in not only the physical development of a toddler and child, but also in terms of their language and social development: we strongly believe that Eilidh’s speech and language improved as a result of her becoming independent in her Micro. Early mobility will promote self-exploration, motor learning, visuo-spatial awareness, social development, confidence and cognition. Children with progressive neuromuscular weakness will benefit from energy efficient light weight wheelchairs at an early age and I ask that you consider seeing children diagnosed with spinal muscular atrophy grade 2 or 3 early to enable them to become mobile as early as possible."
The next month I had an appointment with our OT at the centre and head of services joined us, with Eilidh as our smiling mediator:
Almost defensively, I ask "I hope that you don't think that I'm being a bolshy parent?" and what i heard in reply surprised me, "No, I agree with you".
Wow! the head of services agrees!
And so we talked about Eilidh and her experiences with her Panthera Micro - oh, how she rocked that chair! - and now her Bambino. We talked of her Action3 Junior and how it really wasn't suitable for her to use and maintain her independence because it was too heavy and cumbersome. He told me that I had done a good job - too good! - because they would be unable to source a lighter chair for Eilidh, but they could look at the Action3 Junior and see if they could adapt that.
By then the most important part of the conversation was about providing lightweight self-propelling chairs for newly diagnosed SMA children. We talked of the cost of the chair - which he didn't think was unreasonable as it is comparable to the cost of an adult chair - and I suggested perhaps having a bank of them as they could be reconditioned and reused. He agreed but did state that parents are often very reluctant to use reconditioned equipment for their children - surely it would be better to have your child exploring their environment early than worrying about the newness of the equipment? We talked of the small number of children in Scotland with neuromuscular conditions which would mean that the initial outlay for panthera chairs would be costly - but what cost can you put on a child's independence? Not wanting to be beaten by cost, I suggested a Scotland wide bank of chairs and he said that it would be something that the wheelchair services could certainly consider and he would discuss it further with the other centres.
With the adult chat out of the way, Eilidh was able to show off her cheeky, stubborn, independent streak and we all walked out to reception to say our goodbyes...
I might not have realised improved independence for my daughter, but hopefully - fingers and toes crossed - wheelchair services will seriously consider providing newly diagnosed children with lightweight manual chairs to toddle and explore with. I just need to go and chase him now for his written reply...
