When people tell me they don’t know how I cope with the challenges of our life I always take the trouble to point out to them that Boo is not the challenge. Neither cerebral palsy nor prematurity is even the problem. It’s all that came with his early birth and life-long disabilities. The people. The processes.
The uncertainties over his future are probably hardest of all to deal with, but you learn to live with that. I never thought I’d say that, but you do. I have. I think it’s because I can see the progress he’s making. He is on his own developmental curve, but he is developing into a lovely, bright little boy.
No: it’s the other uncertainties that come with Boo’s disabilities that are the unbearable ones. Your reliance upon individuals, services, administrations and bureaucracies that frequently fail or demonstrate levels of incompetence that are not just astonishing because frequent and because no one ever gets taken to task for them as they would in any right-thinking organisation, but because the consequences of people not getting this right can be profoundly damaging to Boo’s body and state of health. They don’t do my mental health much good either, let me tell you.
Some individuals we have been forced to rely on for advice and support have had appalling bedside manners (‘we don’t use the term vegetable any more, but…’) or made terrible mistakes, one leading to his hospitalisation. Others, happily the majority, have been caring and competent, even brilliant, but they have constantly been let down by the systems they are forced to use. Currently Boo’s physio (the very best of the healthcare professionals involved in his life) is pursuing a failure in duty of care notice about one service’s treatment of Boo at her own instigation, not because we asked her to. The fact that such action is commonplace and affects so many of the families we know makes me want to weep.
Until now the only things that have held us together through the catalogue of problems over getting ‘essential’ equipment and services for Boo (for which we, like so many other families, have had sometimes to wait well over a year) are our waning sense of humour, our determination to fight back and the fact that our home life and routine are fairly stable.
And now even those things are in jeopardy. Our LA is illegally sticking to its guns about the level of support it will give Boo in nursery (15 hours a week because of his age and not enough to cover his time there so I can work) and the onus rests with us to prove in court that they are wrong in taking this position without attending to his level of need and how long it actually takes him to access 15 hours of education, not for them to have to prove that they are right.
This will cost us money. Even if I can psych myself up to defend our case in court to save costs (and I am so beleaguered at the moment, I just don’t think I can) we will need to get a series of expensive private reports drawn up, even though all of those already provided by NHS and LA employees say what Boo needs them to to prove our case. If we got a solicitor, a much better option, we are looking at many thousands of pounds.
Given that we may end up in a Tribunal again about schools in 2 years time, we can’t afford this. More to the point, I would rather the money that we spend supporting Boo gets spent directly on him, not on people who make a living out of the fact that he is disabled.
And so, I can see things very clearly now. When people talk about the challenges in our lives I will be more emphatic. The big challenge in our life is not CP, administrative incompetence, systemic failure, or the illegality or ignorance of the Local Authority. No: It is money.
No one cares about Boo or about us. All anyone cares about is their budget.
So if it’s money people want, they can have it. I am currently begging (I am not proud of it, but I am – it is humiliating) Boo’s nursery to take more money off us (money we can only just afford) to buy him the 1:1 the LA won’t without a fight so I can continue to work. So we can have stability in our life. So Boo can access an educational and social environment that is aiding his development hugely. So that we can keep our home. So we don’t have to pay the council back for adaptations to be made to our home in the next few weeks if we are forced to move out of area into a home that we can afford on one income.
To be fair, the nursery is looking into this possibility. They are looking into seeing if they can help us meet the costs too. But the nursery is part of a national, expensive, private chain. (Your childcare options contract significantly when your child is disabled.) The nursery manager has asked their bosses to arbitrate on this matter. That was nearly 2 months ago. They still haven’t made up their mind. We are totally in their hands. I have no control over their decision at all.
So, in 3 months my life might be very much like it is now. Or it might be very different. I may have handed in my resignation and our home might be on the market. We might be trying to find an elusive accessible property Boo can live in and we can afford on a single salary that is near a decent school for Boo’s sister who will be forced to leave her friends. We might be facing up to having to set up again with a new bunch of healthcare and education professionals for Boo in a new area. Every time I think about it, I feel dreadfully sick.
These known unknowns utterly terrify me. I can’t sleep well and am developing migraines, which I have never suffered from before. I feel so shaken by not knowing what our lives will look like in 3 months time. Whether all the stuff that keeps us together (our home, our friends, our routine) will be taken away from us.
It is devastating. And no one who can do anything about it cares. Not one little bit.