Today it all really got to me.
Several times this summer we have tried to see friends and be sociable. Not just for the children - for me too, this parenting lark can (as a close friend astutely pointed out last week) be a lonely business. Particularly when you have a child with additional needs. Or two. Or three. But after today I think I will be focussing on the positives and staying home.
It's not that I'm "fed up" with all the issues, (well, I am a bit!!) or that I'm having a self-pitying moment, it goes deeper to be honest. It's hard to describe... which is precisely the problem. HOW do you describe to others the difficulties daily life presents, how normal activities are nigh on impossible some days - so challenging you just want to curl up and not try? That might sound defeatist, but it's this growing chasm of experience which is having such a profound impact, in many ways I feel so far distanced from the majority of parents on a daily basis.
Take yesterday. A lovely picnic with school friends of K and A before term starts. To start with it seemed straightforward.
It was a weekend, so H (who is currently in non-stop meltdown as the new term approaches) could be left with Richard at home.
Since it was a picnic the twins should not feel "different" with their food as everyone would be taking their own sandwiches, right?
But kids inevitably share so we had to read sweet labels and draw at least some attention to ourselves. (quietly!) But then the new Mum in the class wanted to know why my two couldn't eat certain things... and didn't understand why intolerances didn't mean small amounts were OK and how their "gut allergies" differ from immediate ones. There then followed the usual toe curling and futile attempt to give the minimum information about a complex and little known disease and swiftly change the subject! My attempt to downplay the food allergy thing ended with A white as a little ghost telling me his tummy hurt and that he needed to go home -so home we went, to sit on a familiar loo with his favourite cuddly for comfort.
You might think that's no big deal. And I guess it isn't, except that's not a one-off - and neither is it our only issue. Every attempt to leave the house with H and any other combination of children is always almost impossible. And staying at home and having friends here can be even worse! Somedays I think a paper bag over my head could come in really handy when out - because so many people think that it's poor parenting that causes ASD/ADHD behaviours. I've actually been told as much more than once. I've even been told I shouldn't have been allowed children after H because I couldn't control his behaviour. (And not by a paid up member of the BNP...) Even family suggest it is somehow "my fault" for having four children - which is totally missing the point because crystal balls are not yet standard issue or remotely reliable.
It's undoubtedly the combination of issues which I find so challenging and others so difficult to comprehend. Many families have a child with difficulties of some sort, and problems FAR more severe than any one of my children. When I see the suffering of some of the children I know and the challenges their parents face I do feel very blessed. But nonetheless on a daily basis I find myself increasingly dwelling on the same question. Just what are the chances of everyone in one family having the same gastrointestinal problems (to some extent), of two of my children needing strong unlicensed medication to keep them well? AND of having a child on the Autism Spectrum, with ADHD and other issues? It's not exactly that likely, is it?? How many other mums spent the last day of the holidays writing three sets of medical notes for school, getting three sets of medication ready? It's actually quite embarrassing, because it doesn't make sense to us either.
And if I don't "get it", what chance is there of anyone else understanding? The GP certainly doesn't, challenging every clinic letter, every prescription. Sadly denial doesn't work as a useful panacea, I wish it did! Our disabilities might be largely invisible, but I cannot deny their existence. I've tried this, many times, because this wasn't in the Plan. I didn't ever imagine any of my children would ever be anything short of or more than "normal". But the Plan somehow got changed, and the reality is there is a huge part of my life I cannot share with the vast majority of my friends, which increasingly takes over and prevents the rest of life happening as it should. It's isolating, restricting, frustrating and at times desperately heartbreaking.
Which is why, for a little while at least I'm retrenching. Retreating from daily social interaction I can avoid. Sometimes the effort before and despair after doesn't make the attempt worthwhile, and it can be as valuable to enjoy and value what comes easily rather than climbing Everest everyday. The children return to school over the next couple of days and I'm going to do all the mundane, safe and easy non-sociable things on my agenda. Staying at Base Camp is sometimes more important than aiming for every summit.