Disability Now article - The Growing Pains of a Disabled Parent

No one warns you how hard it is to be a parent, let alone the parent of a disabled child. 

I was talking to another parent of a disabled child the other day and I basically admitted I 'wing' it - I try things out, see if they work and if they don't move on to plan B, C, D... til I find the solution. 

Sure, there's some input from the 'professionals' from time to time but the bottom line is that the 'winging' it that us parents do is the only real way forward.  He totally agreed, saying he did the same, which was somewhat reassuring!

My latest Disability Now article about the trials and tribulations of being a disabled parent of a disabled child is now up on their website:

http://disabilitynow.org.uk/article/growing-pains-disabled-parent

Raising children fairly/equally

I was momentarily put out recently when a relative suggested that I didn't treat my children equally - one is disabled, the other is non-disabled.

Fortunately I am confident enough to know that in fact I spend a lot of time and energy making sure that I do indeed treat them as fairly and equally as I can, being more than aware that it might be possible to favour one over the other.

It really brought it home how wrong an 'outsider's' [even if they are a relative] perspective can be when it comes to understanding what a hugely difficult job bringing up a disabled child is.

Here are some of the issues we have to deal with [most on a daily basis]:

- finding a balance when it comes to dealing with 'normal' behaviours eg rough and tumble play. Whilst we don't want to deprive either child of this there has to be a line when one child [most likely the disabled one] is more likely to get hurt.

- dealing with the psychological effects of having a disability eg the child might be upset that they can't keep up with their peers, they might feel left out in the playground, they might feel angry with themselves for not being able to do something or for falling over.

- dealing with the psychological effects of being the 'non-disabled' one eg resentment that we're not doing something because of the disabled sibling.

- grappling with the effects of an imbalance in height, strength, mobility and ability between the two children.

I once read the term 'juggling with chainsaws', sometimes it feels like that's exactly what I am doing, and I worry that getting it wrong could potentially have long term effects on both children's wellbeing, attitudes and personality. That responsibility is stressful to say the least.

Because it's such a difficult job I have an enormous amount of respect for fellow parents up and down the country who, unseen and unpraised, are doing this job on a daily basis only they know what it's really like.

The Disability Balance... guilt, cold swimming pools and school PE

Dealing with disability is such a precarious thing sometimes.

Although I try my damnest to treat Archie [who has Kniest] and Ben [who doesn't] fairly I'm probably a bit more lenient with Archie. For example I'll ask Ben to put his clothes away and tidy his room but often I'll do both these things for Archie. I guess I'm just trying to make his more difficult life a bit easier? Perhaps it's a guilt thing.

Guilt does indeed rear its head every now and then. Take tomorrow - it's the annual opening of the [outdoor] swimming pool at Archie's school. At bedtime Archie said he didn't want to go to school tomorrow, which is most unlike him, he LOVES school.

When I asked why, it was because he didn't want to go in the pool because it was too cold. Ben chipped in and said if you move around enough it won't be cold [the sort of thing I'd say when they are in a pool...] but Archie said it doesn't make any difference and I believe him. I always remember being freezing in swimming pools when I was young, however much I swam I would still turn blue.

The thing is do I just hold up the disability card or not? It's not great for him just to be a spectator but if he can't do it then is it cruel to push it? What I do know is that the last thing I want is for Archie to dread school for such a reason.

I think another problem is that most of his classmates are probably swimming without armbands and the like now, and that will set him apart. Although Archie is having individual, weekly lessons he is a long way off being able to swim because he lacks the sheer strength to be able to do it.

Whilst in the old days it was easier to just play the disability card and sit on the sidelines, nowadays PE/Swimming is part of the national curriculum and they get graded in it, so of course Archie is currently graded a 'below average' D, well I never.

This may change as someone is in the process of redefining Archie's PE curriculum but generally I think it's a bit of a farce. Of course it's great for kids to do PE, get a bit of exercise etc but what's the point of marking them on it? Anyone know?

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?

A philosophical disability question...

Yesterday my now 6 year old son Archie [who has the same disability as me] asked me if I was disabled when I was a baby? The question had me slightly stumped because of course I was born with my disability but as a baby was I strictly speaking a 'disabled baby'?

OK some of my milestones might have been later than 'normal' but whether that really affected my then quality of life or justified being stamped with the label 'DISABLED' at that point I wasn't quite sure?

When does disability per se kick in? Is it when you start slipping away a bit too far from the norm [medical model of disability]? Or is it as you are increasingly subjected to a world that isn't accessible to you [social model of disability]?

NB The Medical Model of Disability is where the person's disability is blamed for what they can't do and the solutions are mainly medical eg surgery, physiotherapy and the like. However many Disabled people prefer the Social Model of Disability which refers to the way that they are more 'disabled' by society - by a lack of access, poor attitudes and bureaucratic systems.

Take Archie - he is now significantly shorter than his peers but of course this only becomes an issue in an inaccessible enviroment.... His most obvious difference now as a 6 year old boy is that he is significantly less mobile than his peers which means he's increasingly likely to be left out of riotous playground games and perhaps this is the sort of thing that will make him feel disabled?

I think it's probably fair to say that his experience of being a disabled child is starting to kick in more now and the interesting bit of how to deal with that [positively] is yet to come, tips on a postcard please...

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.