I remember reading this in the early days. As the realisation I really was a ‘special needs parent’ sunk in. I think it was meant as a schmaltzy hallmark sentiment about growth and self-fulfilment. I probably shrugged it off in the ‘yeah, ok then’ pile along with a zillion leaflets and a poem about bigging it up in Amsterdam or something.
Only I’m finding myself thinking about it recently. In a very different way. I’m getting all irritating and introspective. Wondering not who I am, but who I want to be. Imagine if Oprah watched Amelie and the Shawshank Redemption back to back during a Netflix BOGOF. Yeah...I’m that annoying right now. And it has nothing to do with the big questions. Not raising a child with an uncertain future. Not the actual parenting part. No, it’s the fight that comes with it. The need to do it. Deciding how I want to go about it and how I want to be perceived. I’m no warrior. And I’m no push over. And I’m finally having to think about it. Mostly thanks to DIY.
You see, I’m running out of walls. And that’s a problem.
I’ve painted all of them. One three times actually. Our garage looks like a very poorly located branch of B&Q, filled with bizarrely named tester pots. Every imaginable shade of erm, white (look, I never said I was a good or ambitious decorator.) But I’ve tried them all, spent my evenings and weekends painting, sanding, glossing.
Why? Why, almost a year after moving into our house was there this sudden determination? Well, I suspect it comes down to adaptations. After much debate, we refused a Disabled Facilities Grant and the (fairly hideous) proposition put forward by the local authority to adapt our home. Because it’s our home. So we’ll be doing this our way. No clipboards allowed. Whilst we toasted our decision (and ignored the nagging back pain as we continue to lift J), I suddenly found myself picking up a paintbrush. A bit territorial I guess. We marked our outpost. It’s probably a good job we don’t have a cat.
And with the process of painting, has come the satisfaction. The achievement. That’s what makes the dwindling number of walls a little sad. Because in the background to this has been a lot of what I lovingly call ‘J admin’. The to do list that's so long I don’t really know where to start. To be honest, there have been some things I’ve just chosen to ignore. That makes it hard to justify sitting in front of the tv. But you can’t hold a paintbrush and fire off e-mails, or highlight relevant sections of disability legislation. And everyone needs newly painted walls, so that’s a justifiable alternate task.
One of our current challenges is the dreaded ‘EHCP transition’ (aka the Great British policy experiment – think hurried politicians in a tent creating new overly ambitious policies with sprinkles on. No Mel and Sue sadly.) EHCPs, or Education, Health and Social Care Plans are the replacement for the previous Statement of Educational Needs. They bring together education, health care and social care in one document with provision identified. They (ideally) include families more and we all get to say fun things like ‘person centred planning’ and ‘co-production.’ I know, right. That’s more fabulous than a peacock cake.
Only here’s the problem. This (mightily expensive) change needs to be implemented on the ground. That’s happening in a (post?) austerity environment where budgets are stretched, with significant regional variations. It’s kinda like a certain well know coffee chain. Somewhere, some very clever people in a board room thought ‘oh yeah, let’s put people’s names on their cups. It’ll be so personal, we’ll be totally living the brand.’ And sometimes, it works. But each branch is different. Some are busier than others, sometimes people with unusual names pop up and some staff know the system better than others. So every now and then, there’s a bit of confusion as Dave gets Kevin’s Latte and no one can figure out who ordered a skinny decaf soy cappuccino with extra froth.
You see much of the policy does make sense. We should have integration across service areas. We should have person centred planning. But when there is no money, confusion about how to implement and sometimes a belief that following policy is optional…well. It puts parents in a strange position. It can feel as if there are two extremes. Two stereotypes. We are either incapable and must be told how to proceed, how things will be. Or we ask questions, highlight non-compliance with the law and drift into that horrible stereotype of the ‘warrior mother’.
We have a strange juxtaposition with phrases like ‘self management’ gaining ever more traction in statutory services. Yet, we are held at arm’s length from faceless panels and actual decision makers. As parent to a complex child, I sometimes lead. I sometimes don’t. I often don’t know which I am meant to be doing. I flit between two extremes, looking for the middle ground. Often emerging as just an incapable warrior. So I need to decide who I am, who I want to be.
Before our beautiful boy came into our lives, I thought I knew who I was. I wanted fulfilment, excitement and spontaneity. I wanted to travel the world. For someone to buy my favourite flowers in the middle of the week, just because. I wanted to be liked.
Not so much now. I have to face a different, but actually more fulfilling reality. I have another job to do. A role to play. And I can’t always be liked (although, perhaps a little bit, because I still really don’t like that part).
So that is my way forward. To keep on finding out who I want to be. I can’t change culture. I can’t transform the way the system works. But I can decide what I want to be and what I don’t. I can choose to be bold. To be ambitious. I can decide not be frustrated. Banish bitter.
Because so much has already changed. And not in a schmaltzy ‘growth and love’ way (I’ll do you a whole other post on that one – cos it’s true). But the challenges of getting what my boy needs has changed me. Negotiation is my default. And that’s not a bad thing.
I’m more confident. Perhaps more able. More realistic. More determined. Because the rules changed. My landscape evolved. And now I no longer crave white lilies on a Wednesday.