Like many others I eventually succumbed to the lure of Facebook and have steadily built up my list of friends - some are great friends of old, others I have met more recently, mainly through work.
The danger I've found of being open about your disability on facebook is that you can attract 'devotees'.
For those of you not in the know 'devotees' are apparently aroused by disabled people not because of their vivacious personalities, sharp wit, intelligence or flirtatious nature, but purely because of their disability.
Perhaps devotees think they are doing us a favour because they think no one else will go for us. My personal experience is that there are plenty of very 'normal' people who do want to go out with disabled people because of their positive qualities, rather than just because they have a disability.
There's far more to me than my disability so when a 'devotee' picks me out and asks me to be their friend it is really not flattering in the slightest. Ironically in my younger, less experienced and at times more deparate days I might have been flattered.
Nowadays it just seems perversed that someone should pick me out when they don't even know me and for some reason has the audacity to think I might be so desparate as to sign up to be their friend. Who's the saddo, not me.
Monday, February 9, 2009
Thursday, January 29, 2009
Finding an accessible home - what a nightmare!
We're currently lucky enough to be living in a very modern, spacious, single storey home, in fact it was built on Grand Designs so you can imagine what it is like - think lots of glass! Unfortunately it has also recently been sold so we have to move.
This is actually the first time in my 38 years that I've lived in a house without stairs, I'm not sure why it's taken so long for me to realise that it is a good idea. At least in our house in London we did fit some stairlifts, just as well as there were 4 flights of stairs...
Having to rush to find an accessible home is not a situation I would recommend. We've had to stretch our search to two counties to increase the likelihood of finding somewhere.
The problem is that single storey homes are near next to impossible to find. When I say single storey I'm thinking of the more modern concept of single floor living, more 'Grand Design-esque' than bungalow...
Bungalows you see seem to be a very different beast to what might be described in estate agent speak as a 'single storey home'. I've only seen one property described as bungalow that was spacious, modern, inviting and that was a new build. Most seem to be stuck in some bygone age, multicoloured carpets, borders halfway up the wallpaper, pink bathroom suites... arggghhhh.
Anyway better get back to house hunting...
This is actually the first time in my 38 years that I've lived in a house without stairs, I'm not sure why it's taken so long for me to realise that it is a good idea. At least in our house in London we did fit some stairlifts, just as well as there were 4 flights of stairs...
Having to rush to find an accessible home is not a situation I would recommend. We've had to stretch our search to two counties to increase the likelihood of finding somewhere.
The problem is that single storey homes are near next to impossible to find. When I say single storey I'm thinking of the more modern concept of single floor living, more 'Grand Design-esque' than bungalow...
Bungalows you see seem to be a very different beast to what might be described in estate agent speak as a 'single storey home'. I've only seen one property described as bungalow that was spacious, modern, inviting and that was a new build. Most seem to be stuck in some bygone age, multicoloured carpets, borders halfway up the wallpaper, pink bathroom suites... arggghhhh.
Anyway better get back to house hunting...
Thursday, January 8, 2009
Am I bigger yet?
Archie is now 4. I've told him he is a little bit bigger now he is 4 but I get the impression he had expected to shoot up on his birthday. Indeed on the day he asked "can you see me growing bigger"...
He is now increasingly aware that although he might be older than some other children, including his younger [but not little] brother, he isn't bigger than they are.
I find it's a balancing act - not wanting to make him have a hang up about his height whilst at the same time not wanting to pretend that he will end up as big as everyone else when he won't be.
The bottom line is that he could do just fine in life if it wasn't for the prejudice that exist in others....
He is now increasingly aware that although he might be older than some other children, including his younger [but not little] brother, he isn't bigger than they are.
I find it's a balancing act - not wanting to make him have a hang up about his height whilst at the same time not wanting to pretend that he will end up as big as everyone else when he won't be.
The bottom line is that he could do just fine in life if it wasn't for the prejudice that exist in others....
Wednesday, December 10, 2008
The Power of the Internet
When you have a rare condition [and/or a child with a rare condition] the internet is such a powerful tool for finding others with the same condition. That can then be an amazing source of information, support and comfort because having a rare condition can be quite an isolating experience.
As Archie's broken a few bones recently I e mailed an e mailing list for people with Kniest/SEDc and asked if this was a common occurance, seems like it is. Although I'd rather he didn't break bones, knowing that it is 'normal' for some Kniest children [wasn't a regular occurance for me I have to say] was reassuring.
I've also come to realise through belonging to that group how lucky we have been with Archie in terms of him being able to walk, as there are other children with Kniest who can't walk or who use wheelchairs. I'm not sure how much that has to do with the fact that we never contemplated the idea that Archie wouldn't walk, because I can walk. And I wonder how much can your expectations of a child's development can influence their final ability?
As Archie's broken a few bones recently I e mailed an e mailing list for people with Kniest/SEDc and asked if this was a common occurance, seems like it is. Although I'd rather he didn't break bones, knowing that it is 'normal' for some Kniest children [wasn't a regular occurance for me I have to say] was reassuring.
I've also come to realise through belonging to that group how lucky we have been with Archie in terms of him being able to walk, as there are other children with Kniest who can't walk or who use wheelchairs. I'm not sure how much that has to do with the fact that we never contemplated the idea that Archie wouldn't walk, because I can walk. And I wonder how much can your expectations of a child's development can influence their final ability?
Tuesday, November 18, 2008
Mistaking child abuse in disabled children
The case of Baby P is too awful for words. A case of deliberate, willful obliteration of an innocent life.
Before the case came up I had been thinking about whether there was an article waiting to be written about the issue of how parents of disabled children are wrongly accused of child abuse, apparently it does happen.
The reason I'd been pondering the issue was because my son Archie, who has Kniest Syndrome, had recently broken two fingers in a fall. A few days after the fall we realised that something wasn't quite right. A trip to the doctors lead to the diagnosis that it was very very unlikely that the finger was broken as he was using that hand, indeed it looked like he was.
But watching him closely after the visit to the doctors I realised he wasn't using those fingers at all and he would really scream in pain if ever he/we caught them accidently eg through picking him up, dressing etc.
At A&E the doctor was asking him about it and he was saying "sometimes they hurt when I catch them and sometimes when daddy does" - it was an innocent comment that could have been laid open to a different interpretation. It transpires that he had actually broken two fingers poor mite.
So far he's broken a leg and two fingers, [possibly in hindsight after the finger experience] a thumb too. I asked some fellow mothers of children with Kniest whether their children had also broken limbs and it wasn't unusual. The root of the problem is the inflexibility of the joints but it's quite scary going to the doctors/A&E with an increasing list of broken bones.
I can't imagine what it must be like to be caught in the net of mistaken child abuse of a disabled child, perhaps I should write that article and find out.
Before the case came up I had been thinking about whether there was an article waiting to be written about the issue of how parents of disabled children are wrongly accused of child abuse, apparently it does happen.
The reason I'd been pondering the issue was because my son Archie, who has Kniest Syndrome, had recently broken two fingers in a fall. A few days after the fall we realised that something wasn't quite right. A trip to the doctors lead to the diagnosis that it was very very unlikely that the finger was broken as he was using that hand, indeed it looked like he was.
But watching him closely after the visit to the doctors I realised he wasn't using those fingers at all and he would really scream in pain if ever he/we caught them accidently eg through picking him up, dressing etc.
At A&E the doctor was asking him about it and he was saying "sometimes they hurt when I catch them and sometimes when daddy does" - it was an innocent comment that could have been laid open to a different interpretation. It transpires that he had actually broken two fingers poor mite.
So far he's broken a leg and two fingers, [possibly in hindsight after the finger experience] a thumb too. I asked some fellow mothers of children with Kniest whether their children had also broken limbs and it wasn't unusual. The root of the problem is the inflexibility of the joints but it's quite scary going to the doctors/A&E with an increasing list of broken bones.
I can't imagine what it must be like to be caught in the net of mistaken child abuse of a disabled child, perhaps I should write that article and find out.
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