I watched a couple of C4's 'Born to be Different' [BTBD] programmes last night, which I'd taped a few weeks ago. Given that there is so little about disability on TV I always keep my fingers crossed that what is on will do justice to the subject.
The trouble with BTBD is that each programme is basically a recap of each child's life with an added sentence or two to move their story on per programme. The series delights in graphic operations and if you missed them don't worry they are definitely part of the recap. How about more story, less recap.
It's such a missed opportunity as there are some great disabled children in the series and some amazing parents too, in particular Shelbie's mum Vicky - how she kept it all going on her own initially with 4 children, one of who was quite ill...
And whilst many parents might comply with the consultant suggestion that Vicky should basically agree to let Shelbie die at the next opportunity - he would have done it ages ago [well thank god you don't have a disabled child then] - Vicky looks at a very well cared for Shelbie and says she still has plenty of life in her yet.
The thing is that people who don't have disabled children just have no idea what it is like to have one; you don't just snuff them out because they are a bit of a practical or physical hassle or [hopefully not] because your consultant says he would have done it ages ago.
Having a disabled child is an emotional rollercoaster, you get lows but you also get highs. You get a sense of that in BTBD but I just wish you could get an even greater sense of the lives of disabled children and their families rather than wasting so much time on recaps and showing us graphic operations.
Thursday, May 28, 2009
Monday, May 18, 2009
When I grow up....
Archie has decided he wants to be a space shuttle driver when he grows up and Ben is going to be a police car driver. Oh great.
Given that he'll probably end up around the 4ft mark I'm kind of hoping that he'll be changing his future career every week and will eventually settle on wanting to be something that he can be, rather than something that you have to be ultra fit and probably a certain height to do...
We might have to spend the rest of his childhood avoiding a trip to Cape Canaveral in case that fuels his enthusiasm for the job even more.
Given that he'll probably end up around the 4ft mark I'm kind of hoping that he'll be changing his future career every week and will eventually settle on wanting to be something that he can be, rather than something that you have to be ultra fit and probably a certain height to do...
We might have to spend the rest of his childhood avoiding a trip to Cape Canaveral in case that fuels his enthusiasm for the job even more.
Tuesday, May 12, 2009
Bouncy castles
We went to a fabulous children's party on Sunday, the children loved it and I had a nice relax with a few glasses of red wine whilst chatting.
It was interesting to see how far Archie has come in the last year or so. A year ago he wouldn't have strayed away from either Mike or myself, if a child had approached him he probably would have cried and he would never ever have wanted to go on a bouncy castle if anyone else was on there.
Now it's a completely different ball game. Half the time he was off chatting to other people and mingling with other children, the other half of the time all he wanted to do was go on the bouncy castle and he didn't care how many children were on there.
Of course this leap of confidence is brilliant but poses a dilemma because half the posts I read on the SED/Kniest mailing list I belong to are about neck instability and children needing fusions of the neck bones to increase its stability.
An unstable neck is not a good thing. If something goes wrong at that level... it doesn't bear thinking about really. It just comes back to that balancing act - wanting Archie to have a normal life, doing what his peers and his younger brother are doing, and not wanting him to injure himself.
I often try to be a laid back parent and it's normally only after the event that I go into a 'oh my god what if XX had happened'.
Since the party Ben has also started trying to do head over heels, he obviously saw another child do it... now if Archie tries to get into that activity I really will need more than a few glasses of red wine.
It was interesting to see how far Archie has come in the last year or so. A year ago he wouldn't have strayed away from either Mike or myself, if a child had approached him he probably would have cried and he would never ever have wanted to go on a bouncy castle if anyone else was on there.
Now it's a completely different ball game. Half the time he was off chatting to other people and mingling with other children, the other half of the time all he wanted to do was go on the bouncy castle and he didn't care how many children were on there.
Of course this leap of confidence is brilliant but poses a dilemma because half the posts I read on the SED/Kniest mailing list I belong to are about neck instability and children needing fusions of the neck bones to increase its stability.
An unstable neck is not a good thing. If something goes wrong at that level... it doesn't bear thinking about really. It just comes back to that balancing act - wanting Archie to have a normal life, doing what his peers and his younger brother are doing, and not wanting him to injure himself.
I often try to be a laid back parent and it's normally only after the event that I go into a 'oh my god what if XX had happened'.
Since the party Ben has also started trying to do head over heels, he obviously saw another child do it... now if Archie tries to get into that activity I really will need more than a few glasses of red wine.
Wednesday, May 6, 2009
New 'Rough Guide to Accessible Britain' available now
After reviewing the first edition of the 'Rough Guide to Accessible Britain' for OUCH last year, see: http://www.bbc.co.uk/ouch/features/the_rough_guide_toaccessible_britain_review.shtml I was asked to write a couple of reviews for the second edition.
So 'en famille' we checked out the Abbotsbury Swannery and Sherborne Castles, both in Dorset. The Castles are more of a 'grown up attraction' but the boys thoroughly enjoyed the very accessible swannery - seeing the multitude of birds at close range, wandering along very flat paths and swinging on the rope by the 'bouncing bomb'...
The guide is even bigger and better than last year and is available from http://www.accessibleguide.co.uk/ - it's free to blue badge holders. If you do get a copy check out the rather dinky photo of Archie and me on page 97!
So 'en famille' we checked out the Abbotsbury Swannery and Sherborne Castles, both in Dorset. The Castles are more of a 'grown up attraction' but the boys thoroughly enjoyed the very accessible swannery - seeing the multitude of birds at close range, wandering along very flat paths and swinging on the rope by the 'bouncing bomb'...
The guide is even bigger and better than last year and is available from http://www.accessibleguide.co.uk/ - it's free to blue badge holders. If you do get a copy check out the rather dinky photo of Archie and me on page 97!
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