I’ve had too much time to think and dwell on things today. Working from home means that:
a) I concoct some fantastic plans in my head that are highly unachievable but limitlessly dream-like.
b) I eat tons.
c) I ponder on all my failings and successes in life.
Jude. So many things I could have done to help him more but here we are, 10 years after his birth and we still do not have all the support and resources he could really appreciate. Physiotherapy and Occupational Therapy (OT). I know I mention them a lot and it’s taken quite a few years for the enormity of this to kick in but the reasons Jude was turned down by our local Children’s Centre (NHS Trust run) are appalling. So at 5 years old, Jude was turned down for physio (in Hertfordshire) because he can walk. YES, he can walk and this is fantastic but there are so many things he can’t do. He can’t climb a climbing frame, stairs without a bannister are still a worry for him, his movement is so awkward and his clumsiness is off the scale.
Even walking looks uncomfortable to Jude – see how his arms don’t relax naturally? I don’t know how to help him physically and it’s awful. He has had a lot of help from school facilities and when he moves to his new school in a month or so, I’m hoping it’ll only get better. I’m also fearful that we’re too late and by 10 years old there isn’t a lot we can do.
OT – Jude was turned down for this, aged 5 because his concentration wasn’t good enough. Yes, a 5 year old was being judged on his concentration. Not just any old 5 year old, one with severe learning disabilities and probably the mental age of a 2 year old.
Are these people insane?!!
I saw this article today that backs up my lamentation regarding health and social care for disabled people. Don’t read the whole thing, it’s too depressing. I copied the below paragraph from it, for you:
“Care for people with learning disabilities was rated on the proportion of patients receiving annual check-ups and their ability to keep patients out of hospital. No CCG was given the highest rating of “top performing” and 193 out of 209 were deemed to “need improvement”.
What else is there to say? I have contacted the Children’s Centre today so we’ll see what they come back with.
Moving onto my initial issue with working from home…point a) my fantasy plans for the future. They largely involve living on a farm on Ibiza, growing fruit and vegetables, adopting at least 50 cats and dogs and having endless picnic parties on the beach. Look, we’ve already started the vegetable growing!
What are your future dreams??