Being a parent

Being a parent is no mean task. Fact.

Add to that being the parent of a disabled child. Some days I feel juggling with chainsaws might be easier.

All parents want their children to have friends and be popular. Nowadays, to encourage friendships to form children go on 'playdates' where they go round to a friends house after school or a friend comes round to their house. This scenario poses a dilemma for me because my son Archie, who has the same disability as me, often comes home from school practically dead on his feet.

Sometimes he can get through the whole thing purely on adrenalin, other times it's all too much and watching him struggle and the resulting frustration is so hard sometimes.

I'm just hoping that as he gets older his stamina will grow, but I do fear that his peers will always be a step ahead of him... There doesn't seem to be much guidance on these sort of parenting issues - maybe I should be writing THAT book, but do I actually know any of the answers?

Sometimes it's hard to tell the truth...

Recently Archie [who has Kniest Syndrome which means he will never be that tall] has talked about when he is older and with that he talks about being taller...

When I mentioned this to my partner Mike he said we mustn't lie to him; indeed I haven't lied to him but I have used vague words like 'possibly/maybe/I'm not sure/I don't think so' in response to comments Archie's made like "when I'm older I'll be as tall as daddy"....

I mean is there any point in saying to him at just 3 1/2 years old, "actually Archie you're not going to be as tall as daddy, you're probably going to be more like mummy's height"? In fact when Mike did say that to him the other day he said "no, I'm going to be as tall as you daddy..."

The thing is is the whole truth helpful at this stage? Will it help him to adjust to the reality of the future? Or could it possibly have a negative effect?

If you know the answer please tell me!

Broken leg update....

4 weeks ago I posted about my disabled 3 year old's broken leg, happy to say he is now walking better than ever and is very very pleased with himself about the whole thing too. It is so wonderful to see.

It's hard to convey how stressful this whole episode was; it felt like he'd virtually only just started walking, then all of a sudden he couldn't and it was no mean feat for me to have to be carrying him as he's nearly a 1/3 of my weight now, then there was the anxious wait to see if it would all heal OK, followed by more waiting to see if he would get back to where he was.

Fortunately this episode has a happy ending and I really hope it is a one off. Have booked him an appointment with his consultant in May to amongst other things see if is is more likely to happen again for him than a 'normal' child or if he was just plain unlucky.

No one tells you how stressful being a parent is.