ITV's 'My Dwarf Family' [their programme title not my ideal wording...]

I can't stand the word Dwarf.  Whilst some short people have reclaimed it using the word just doesn't work for me because it still has too many negative and derogative connotations.

So it was with trepidation that I watched ITV's 'My Dwarf Family' [was on Thursday 15th August, 2013] - a programme which followed 3 families each of which had one or more members who had achondroplasia, the most common form of short stature.

Although the condition is somewhat different to Kniest Syndrome the issue of short stature does throw up similiar issues whatever the label you give it and it is always interesting to see how other people fare.

I really felt for the young couple [the woman had achondroplasia and the man didn't] grappling with the issue of when to have children [she wanted them now, he didn't].  They both seemed to feel, as we did, that they would want a child whether or not it would be short statured.

Having been there and done that, and having ended up with one child who is short statured and one who isn't, I think I can honestly say that the such a seemingly simple decision can turn out to be hugely more complicated when it becomes a reality...

I also really felt for the parents of the young children who were short statured - the whole 'letting go' of your child, getting them to 'act' their age, letting them be independent just seems so much harder when they are so much smaller than their peers.

Indeed the programme opens with a boy, the height of a 4 year old, cycling by a very busy main road - it looked hideously like a bad idea, but this boy was 11.  Most likely his peers would be allowed to do this so why not him?

Whether the decision was easy or hard for his parents I don't know but there is no doubt that if you are a short statured parent [or wannabe parent] you'll face some very tough decisions along the way, it isn't a process for the fainthearted and perhaps that's why we're such a feisty, resilient lot!

If you want to see the programme it's up for a couple of weeks:

https://www.itv.com/itvplayer/my-dwarf-family/series-1/episode-1-my-dwarf-family

Ellie Simmonds - what a role model

It's just brilliant seeing Ellie Simmonds popping up on the TV - I've spotted her on Sports Personality of the Year [where she spoke with huge confidence], A Question of Sport [where she got a lot of the answers right and was on the winning team] and this week on The Great Comic Relief Bake Off [where she was made Star Baker].

Her inclusion in these programmes is just so natural, and it's simply great to see a young disabled person [she's just 18 years old] with so much confidence, life and charm.

I hope she realises what an inspiration she is.  I know a lot of disabled people hate the 'i' word but take my son who is also short statured - the only other short statured person he sees is me, so it's just fabulous for him to see someone else who is short not only on TV but right up there with other sportspeople and celebrities.

Let's hope the inclusion of more disabled people like Ellie on TV continues as the norm and doesn't disappear as the memories and intentions following London 2012 fades, what a great legacy that would be.
  

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.

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.