On Saturday, like every Saturday, I took Boo swimming. It is one of the highlights of my week. He’s such a water baby and to see the incredible joy he has doing things in the water that he can’t do on dry land is just … well … so amazing words fail me. But this Saturday, I wasn’t so excited.
You see we were with a different group of kids and parents for the new class term. Boo is at the limits of what he can do in this mainstream class, which now involves diving off the side and running on a float. So we can’t yet move any further forward. I suspect we’re at the end of the line of these lessons. I mean, Boo can’t even sit on the side safely. But his teacher is brill and we adapt things. We decided to repeat the level we have just done with a new set of parents. Boo wouldn’t care he was repeating and it would be good for him.
But I was dreading it. There would be the looks from parents who didn’t yet know him. The explaining to do about why my little boy can’t stand. The questions to answer. The ‘what’s wrong with hims’.
We had some curious, if well meaning, looks throughout the class, but it went fine. As we were getting ourselves dry afterwards a parent asked if we were new to the class (clearly her way into finding out what Boo was all about, I think). She was nice and I just explained why were we repeating the level. I told her that Boo loved swimming and since there’s no hydro in our area and no special needs classes for kids his age locally we were sticking with mainstream lessons as long as we could get away with it.
The another Mum joined in. There was something about the way she spoke to me that made me understand that she lived in or on the periphery of our special needs world. You can always tell. She was confident in our company; she looked at Boo unfazed. Either she knew a child with additional needs well or worked with them. I just knew. Thirty seconds later all was revealed when she said she was an Educational Psychologist (or EP to those of us who live in this world of SEN acronyms). She was infuriated that Boo doesn’t get hydro. In her area, just over the border, she explained, Boo would.
And then she tried to spur me on. ‘This is just wrong. But it is about Boo’s needs you know. If the NHS doesn’t fund hydro in your area, then you should fight them. If your physio supports you, get her to write on your behalf to force them to provide access to a private pool. It’s discrimination. Honestly, the parents who fight the hardest and shout the loudest get the most for their kids.’
If I’d had a pound for every time someone had said this to me since Boo’s birth…
Of course I’ve looked into ways of accessing hydrotherapy. And of course his physio supports us and would testify to the benefits for Boo. But he furthest I’ve gotten in pursuing this is to be given the number of a private physio who charges an eye watering per hour fee for hydro once a month (and we pay a small fortune for swim lessons now, let me tell you).
I thanked the EP for her advice and support and explained that I would get onto it, but that we were fighting two other big battles at the moment (statementing and social services over house adaptations) so it wasn’t at the top of the list. She understood. She knew how hard it was. ‘But keep fighting’, she said.
I left feeling grateful for the kindness of strangers.
And sad. Really, really sad. I tried to work out why and think I now have.
You see, I realise that I have had it with the fighting talk. Absolutely totally and utterly had it. Don’t get me wrong, we have had to fight for virtually everything for Boo: to get onto waiting lists; to get Boo off them to actually see someone; for virtually every piece of equipment he has, including his Bee seat (that fight nearly broke me) and his adapted buggy; to get him 1:1 support in nursery; even down to getting a bloody pair of Piedro boots. I could go on.
Of course, we’re not alone in this. You need only look at the special needs equipment online forums to see how hard people have to try and how much money they have to save to buy even the basics in our children’s lives. These forums are totally great – I use them a lot myself and have bought lots of essential kit for Boo from them second hand. But they are also incredibly frustrating and occasionally downright uncivil.
Here’s a common scenario. Parent A at the end of their tether waiting for something they have been told is essential for their child’s health and happiness asks if anyone has one to sell on said forum. People jump in and say no but express sympathy with Parent A for the ridiculousness of their predicament. Then Parent B jumps in and points out, in the spirit of helpfulness, that Social Services or their PCT should provide this equipment free of charge. Of course Parent A knows this and has already exhausted all lines of enquiry. Parent A explains this. Then Parent C comes in and says Parent A should fight harder. They should make them get it for their child. Parent A either answers back that their LA or PCT doesn’t work like that or silently crumbles.
Because you know what? There is NOTHING national about the National Health Service. And you cannot emphasise the LOCAL in Local Authority enough.
Now I know everyone is trying to be helpful, but I wonder if we are, really. Of course, we are parents. Of course, we would do anything for our kids. Heck, in my darkest moments with Boo, when we didn’t know if he would survive or not, I begged any god that would listen to let me die if he would only live. Of course, we will fight for them. But is this fighting talk helpful?
I remember talking about something similar (although in other ways very different) with a friend who had a close relative in the advanced stages of cancer. She hated the fighting talk too. Her relative would not win this particular fight. That didn’t mean she wasn’t the most poised and determined of women. That she didn’t cope with her appalling situation with a courage I don’t know that I could ever possess.
Here’s the truth: the language of fighting turns us into winners and losers, because that’s how fights go. This cannot be right. Surely, we are in this together.
What if you can’t persuade the LA to support your child in nursery? What if you can’t get them to buy your child Piedro boots? Are you a bad parent? Is it just that you haven’t fought as hard as everyone else? Of course not!
And you know what really gets me? What really, really gets me? It’s that we have all internalised this language of fighting so much, become so embattled in our special needs world that we accept it. This is as true for me as anyone else. My last post about our statementing debacle was called ‘Let Battle Commence’.
Today I want to look at things differently. Today I want to ask: what is so wrong with this world that simply tending to the need of some of society’s most vulnerable people has become a battleground?
The minute we start using the language of fights and battles we become part of the problem, turning our lives into a survival of the fittest (for fittest read: most vocal, most persuasive, most legally minded, most litigious, most desperate) parents for the sake of our kids. This cannot be right. Can it?
But I fear it cannot be undone either. I wrote this post because I feel I’m done with fighting (I’ve always preferred the more American sounding word advocating anyway). Because I am battle weary. But I can’t let Boo down. I have to press on and charge ahead. And the minute I stop writing this post, I have to write a covering letter to our Local Authority about Boo’s draft statement, which will quote case law and the Equalities Act and which will be laden with fighting talk.
And you know what? I hate it. I wish things were different. I wish I knew what to do about it. I suppose the only thing we can do is make sure that our battles with systems don’t force us to battle with other parents like ourselves.
Each battle for every one of our kids has to been as a battle for them all. Otherwise, what price victory?