Thursday, 12 November 2015


Being mum to a special needs child means you get used to certain reactions from people. I call them the two Ps, which gives me pleasing opportunities to pun on ‘Two P or not two P?’. 

The first P reaction, or (P-action if you prefer, although that sounds a bit urine-based) is Pity.

I remember getting angry years ago when a woman did a double take and set her face into Pity Mode as she looked at my young daughter in her buggy, zonked out, strapped up in her restrictive body brace. 

I remember wanting to scream at her: “You don’t know anything about her life! She’s just tired, you haven’t seen her giggling and playing and singing! How dare you pity her!” 

I was a lot angrier then; I feel differently now. People who give you the pity face aren’t being unkind on purpose. It’s a minor irritation. It’s annoying in the way a wasp is annoying: seeing pity on someone’s face makes you want to swat it away, even though you know you’re bigger than it, it doesn’t know any better, and it can’t really hurt you.

The second P reaction is Praise. 

We all need a bit of positivity in our lives, and someone telling you you’re doing a good job can give you a much-needed boost. But it should be earned: being told you’re an amazing parent just because your child has special needs is actually pretty insulting, to both you and ‘ordinary’ parents.

The phrase: “I don’t know how you do it - I couldn’t deal with everything you have to deal with,” is a corker that gets wheeled out by good-intentioned people every now and again, and it’s as wrong as a wrong thing that’s gone wrong that you’re looking at wrong. 

Us parents of special needs children are no different from other parents. We just share a few experiences, that’s all. (I’m not belittling this - it’s a very strong shared bond). But we cock things up like all parents do, we snap and shout when we’re knackered, we can be too demanding, too lazy, too strict, too lax, too full-on, too hands-off, too much, too little. We’re just parents. 

Sometimes we can be pretty damn amazing, but that’s just because of, you know, love. We aren’t unique for loving our children. Or for thinking that they’re much more lovable than anyone else’s.

There are, of course, other reactions. Not all beginning with P. If I had 2p for every time I’d seen a look of disapproval from someone judging me and my daughter when she’s behaved ‘inappropriately’ in public (having a tantrum, not acting in a way people expect for her age), then I’d have roughly £15.86. (That’s a large amount of 2ps, but perhaps doesn’t illustrate my point very well. It happens a lot, OK? A lot).

I suppose the conclusion I’m rambling towards is this: people will react to your child throughout their life (for good or bad reasons). You can spend an awful lot of time tying yourself up in knots about this. Or you can accept that in the end, there is only one reaction that counts. How you react. That’s the important one. What isn’t important is what other people - usually people you don’t even know -  think. 

You’re allowed to get it wrong sometimes. But how you deal with it is how you deal with it. Your love is your love. And the rest of ’em can P off. 

Song is Ann Peebles - I Pity The Fool

This post first appeared in the latest edition of PWS News, the newsletter of the Prader-Willi Syndrome Association UK. They have a very informative website here.

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