Lordosis - curvature of the spine and all that

A few weeks ago we took Archie to see my/his consultant, I was concerned that the lower part of his back is already quite curved. After waiting around, seeing the consultant's stand in, getting x-rays, seeing the consultant's stand in again we were told he would call after having spoken to absent consultant.

Weeks passed without a call so I followed it up myself. The feedback was that there is nothing they can do [certainly at this moment in time anyway] as lordosis/curvature of the spine is all part and parcel of bone dysplasia.

The only advice was to try and ensure that Archie’s spine and hips are kept as flexible as possible and keep him as stretched and as strong as possible. Though ideas as to how to do this were not forthcoming.

As a child I too went for these annual checkups with a consultant, both my parents would take the whole day off work because it was almost a whole day of waiting before you were called in. He would, with an entourage of medical students looking on, give me a quick once over and say 'no need to do anything at the moment, maybe next year, see you then.' Within minutes we'd be back out in the waiting room.

I live in the hope that maybe there's more that can be done for Archie to minimise his 'difference', but maybe it really is just pie in the sky wishful thinking on my part and more about me anyway - wishing that my back had never been allowed to have got so curved. Don't get me wrong I'm not all out to make him 'normal' but if there are ways of preventing certain things happening I'd go for that, I certainly won't be pushing for him to go in for leg lengthening that's for sure!

Disabled people overload on TV!?

Nearly choked on my lion bar when a short statured teacher popped up on Eastenders last night and then on top of that there's a blind person and someone with Albinism on Big Brother!

Not sure if the EE character will be a regular but at least the Big Brother inmates might last for a few weeks and provide some sort of enlightenment. All good stuff I hope.

Disabled or not disabled that is the question?

For me there is no question about it - I consider myself to be a Disabled person. The capital D is deliberate, the idea is that it makes a political point ie I feel I'm more disabled by physical aspects of society, eg stairs and high counters, and people's personal prejudice/ignorance, than I am by my 'condition' per se.

I've been having a lot of contact with disabled people recently or rather people who you would think would identify themselves as disabled but they don't. They use phrases like "normal with additional needs", or "differently able" or just deny any allegiance with disabled people whatsoever, "I'm not one of them" sort of attitude.

Up until I was about 18 I was the same. In spite of being much much shorter and less mobile/agile than my peers I had a bury my head in the sand attitude towards aligning myself with "those really disabled people over there", ugh.

Then in my gap year I got a job working for a very small disability charity working with some real disabled people and it blew me away really. Here were some people who were positive, independent, dare I say it HAPPY about being disabled. To align myself with them wasn't saying I was rubbish, unable, inferior, it was about saying I was proud to be disabled. It was about what you COULD do rather than what you couldn't and about recognising that it was the barriers in society that often had far more impact on how difficult our lives were than our "medical conditions" [otherwise known as the social model of disability...].

I think once I reached that turning point in my life I became much much happier about who I was; I wonder whether this personal contact with people who are proud to be disabled is a crucial element needed for [some] people to identify themselves as disabled, or is it just coincidence that a lot of the people who deny their 'disability' say they don't really have any contact with disabled people?

Honest to blog

Someone sent me a link to a blog by a man with leukaemia the other day, it was so honest and open that it was impossible not to be moved by it: http://baldyblog.freshblogs.co.uk/

It made me think that in order for my blog to be more constructive perhaps I should be more honest and open about the issues I face especially the issue of having a child with the same disability as me.

But it's SO hard being honest with myself about the whole thing sometimes.

One of the issues I'm currently thinking about after a recent visit to the consultant is how far would I go to prevent Archie getting the same curved spine [lordosis] I have, a symptom of having Kniest. My problem is that perhaps the one thing I've always hated about having Kniest is the curved spine aspect of it - it made me semi-suicidal when I was a teenager.

But even if intervention is possible [and I currently don't know if it is because the consultant we actually went to see was "on a course", great] it will involve spinal surgery which is obviously not without great risk.

Would I be wrong to persue this option or wrong not to?

Is there a perfect non disabled/disabled sibling combination?

I've been trying to work out if there is a perfect combination of siblings when one of them has a disability?

My son Archie has Kniest Syndrome which, put simply, means he will be short statured and will have mobility problems. My younger son Ben doesn't have Kniest.

Now Archie is 3 and Ben is 16 months they are already the same size. Ben is already more agile than Archie and probably physically stronger too.

Archie is starting to notice all this I'm sure and it must be hard for him to watch his younger brother being able to do certain things more easily than he can.

Would it be easier if Archie was younger? I think perhaps yes. I was the youngest of 3 sisters and I don't ever remember comparing myself in the same way as they were obviously going to be more able/better than me at most things - the excuse being they were older.

Does increasing the number of siblings distract further from the direct "competition" of having 1 disabled and 1 non-disabled child? I very much doubt I'll be able to answer that one from personal experience but I'd be interested to know from other people's experience.