We are lucky in that Nate has a lot of input from our local authority (at this stage).
He attends a weekly physio group and gets home physio and hydrotherapy once a fortnight. He also goes to a sensory visual impairment group run by the VI team, and then a sensory group and development group run by portage. I have many criticisms of our local authority but group wise they are fabulous.
Nate loves his groups ( though we best not mention his sleeping through hydrotherapy today) and meeting other parents is a lifeline.
All these groups and input seem to be finally helping his development (combined with his flash super hero style orthotic suit not funded by LA)
While Nate has always smiled and laughed through his groups he has not really been able to join in. The first group we attended, in the beginning, was actually a total nightmare- I struggled to hold this extremely floppy oxygen dependent little boy so he could see what was going on around him. It was upsetting and hard but we carried on going just to get out of the house.
Gradually we began to access other groups too through Physio and portage. I became less worried about holding Nate, admitted my difficulty holding him, bean bags were offered and things became easier. Recently nates tone improved to a point where holding him wasn't so much of an issue :)
But now, suddenly, he's made a little jump in development. Last week when singing the welcome song he hit his chest in time to "here I am here I am" , he can now reach, pick up, and shake a small rattly instrument, and bangs a tambourine with delight.. Hard! He's also started to play with purpose and has demonstrated he understands cause and effect so the plan is to introduce switches to song time in the groups we attend to help communication!
We had a child development team meeting last week and they asked me how I felt things were going. I replied "really well actually". They looked surprised. But he IS doing well, relative to how he was, and what they thought about him. I don't expect him to wake up one morning and be "normal" I don't have any expectations.
So "every little things he does is magic". Well, to us it is.
the kids
Wednesday, 26 September 2012
Sunday, 9 September 2012
What can we take away from the Paralympics?
My meaning here is mixed.
The Paralympics has brought to our attention talented athletes. It has provided role models to disabled and able bodied people. It's brilliant to read of children like the daughter of the footballer Phil Neville no longer dreading their wheelchair assessments, or others thinking "they are just like me" or "i'd like to try that".
We have been introduced to sports that require sheer determination and willpower. We have seen athletes react badly when things haven't gone their way. Channel 4 have billed this as "here come the superhumans" but most importantly it shows they are HUMAN.
However, irritatingly, the media keeps harping on that the Paralympics shows what EVERYONE can achieve with effort and determination. This worries me. Paralympians are high calibre athletes, fit and healthy. Not everyone with a disability, whether they wanted to or not, could compete in sport. A high proportion of disabled people in this country are sick and disabled. As is my son. My daughter now has some unreal expectations of her brother, who is unlikely to reach adulthood according to the experts. I dearly hope that our new hero worship of these athletes doesn't have a negative affect. Just because these athletes win medals and compete for their country doesn't mean they don't require support, therapy, adaptations, and financial assistance. And let's not forget how inaccessible our country can be to those with mobility problems.
Yeah an athlete may win gold in a wheelchair on a flat track but you try getting one on and off buses or kerbs!
What I hope is that seeing the humanity of a variety of disabled people on our screens will leave not just a legacy of sport but a more understanding nation. Where people don't nick disabled spaces, don't stare, don't accuse people of
being scroungers, where it's ok to talk about illness and disability.Where we treat people with learning disabilities with respect and not mockery.
Not asking a lot am I?
We took our daughter there.
The result was healthy dialogue about disability.
Paralympics2012 was AWESOME!
The Paralympics has brought to our attention talented athletes. It has provided role models to disabled and able bodied people. It's brilliant to read of children like the daughter of the footballer Phil Neville no longer dreading their wheelchair assessments, or others thinking "they are just like me" or "i'd like to try that".
We have been introduced to sports that require sheer determination and willpower. We have seen athletes react badly when things haven't gone their way. Channel 4 have billed this as "here come the superhumans" but most importantly it shows they are HUMAN.
However, irritatingly, the media keeps harping on that the Paralympics shows what EVERYONE can achieve with effort and determination. This worries me. Paralympians are high calibre athletes, fit and healthy. Not everyone with a disability, whether they wanted to or not, could compete in sport. A high proportion of disabled people in this country are sick and disabled. As is my son. My daughter now has some unreal expectations of her brother, who is unlikely to reach adulthood according to the experts. I dearly hope that our new hero worship of these athletes doesn't have a negative affect. Just because these athletes win medals and compete for their country doesn't mean they don't require support, therapy, adaptations, and financial assistance. And let's not forget how inaccessible our country can be to those with mobility problems.
Yeah an athlete may win gold in a wheelchair on a flat track but you try getting one on and off buses or kerbs!
What I hope is that seeing the humanity of a variety of disabled people on our screens will leave not just a legacy of sport but a more understanding nation. Where people don't nick disabled spaces, don't stare, don't accuse people of
being scroungers, where it's ok to talk about illness and disability.Where we treat people with learning disabilities with respect and not mockery.
Not asking a lot am I?
We took our daughter there.
The result was healthy dialogue about disability.
Paralympics2012 was AWESOME!
Subscribe to:
Posts (Atom)