Yet she is so very different to other children.
And cerebral palsy was not mentioned at all at this meeting. It clearly has become a badge of convenience: a label she needs to get services. Undiagnosed was the term used by the neurologist, so perhaps it is time to embrace the unknown.
He noted that she has contractures but no spasticity, severe disabilities but no seizures. A difficult premature birth, but no apparent brain damage.
Most of the time we just motor on, but sometimes I really wish that I could find a community of other Smiley children. Wouldn't it be lovely to make contact, to discuss how we all cope, what might lie ahead, and even better, to see the joy of a room-full of children like my special girl?
And I remembered another reason this week too.
I had a little wobble about Smiley thanks to an article in the Irish papers about adult services being denied to a teen with severe disabilities. Just like her. And she is leaving school in two years time. What will be there for her, and who do I ask? Her social worker is out, her replacement is on two week's holidays, and no-one else will talk to me. It's not urgent, so why should they?
I asked Google what happens to children with severe disabilities when they grow up. I wanted to know who they live with, how they pass their days, what services are available, and what does my daughter deserve. Google suggested my own blog, which shows just how little information there is out there.
I spent Friday afternoons ringing around organisations in the UK and Ireland, but with very little to show for it. No, I don't think my daughter will be attending workshops, no she has no diagnosis, so no there are no specific organisations that I can ring for advice.
There was a report some years ago on Irish television about a couple who were caring for their adult son with severe disabilities, and some days they could barely find the energy to get him out of bed. It stuck in my head. I hope my future with my daughter will not be like that.
I just want her life to be like this all the time...
|Saturday June 15th 2013|