Known unknowns

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.

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16 thoughts on “Known unknowns

  1. Leigh Kendall

    I don’t have words. I’m sorry. There are lots of us who care, but sadly we are ones who cannot do anything about it. The virtual love and hugs I can send feel so insignificant. Thinking of you xxx

    Reply
  2. Complicated Gorgeousness

    I care. I care a lot. I’ve just read that with a shudder as I remember the fight only too well. It is a horrific juggling act and I am not sure how I did it for so many years. It is not fair. At all. We are lucky now that Gabe goes to school four days but there is no wraparound so work has to finish at 3.30pm but it is a million times better than it was. But you have a couple of years yet before this will be the scenario for you. Gabe’s chair is broken but I can’t face the OTs. I still haven’t applied for direct payments. Now he is getting bigger there is the bed to think of. We got turned down for adaptions as there is no diagnosis so we need to keep applying every year. It is beyond wrong. And I hear you. I do. Keep going lovely. xxx

    Reply
  3. Paul Watson

    I think that part of the problem is that the system actually incentivises systems to not fully meet needs. All that happens if you complain seems to be that after a long and protracted fight they grudgingly do what they should have in the first place and treat you as hostile for having the gall to ask them to do their job. This needs to change.

    The Child Brain Injury Trust normally offers grants to cover the cost of education assessments, and although they’re not accepting applications at the minute it might be worth contacting them to see if they’re planning on restarting soon.

    Reply
  4. lookingforbluesky

    Hard to believe that the system is still the same as it was 15 years ago when I was battling for my daughter. If there’s anything I can do, I will. Have you considered going to the media? It’s crude and intrusive, but it regularly gets results in Ireland. Thinking of you xx

    Reply
  5. Mummy Zen

    I’m really sad to read this and can’t imagine the turmoil you must be going through. I sincerely hope things can be resolved in the best possible way for you all and in the meantime wish you every strength getting through this rough time. xx

    Reply
  6. downssideup

    There are no words to reply to this. This situation is simply not right. Have you contacted IPSEA, and Special Needs Jungle might have contacts that can help you in your fight? This is not how it should be for our children.

    Reply
  7. uggerthebugger

    Another one who cares here. Another one who’s walked a mile in your shoes, some time ago, and lived to tell the tale. The migraines, the panic attacks, the feeling of being stretched paper-thin, and not by the disabilities – but by the actions of some of the warped sociopaths who make a living out of pretending to meet our children’s special needs.

    Unfortunately, I’m also another one who can’t do anything to directly help. All I can say is that I’m still standing – I’m not the same person I was, but I’m still here. I won my battles with the LA – I was told the battles would be against impossible odds, but in most cases the odds are good if you have the stamina.

    The approach of many LA staff – particular senior ones – is similar to the one used by the Wizard of Oz. Take the front away, show them that you know that they are acting illegally, show them that you’re willing to go all the way – and in the overwhelming majority of cases the legal proces reveals them for who they really are: sad, shrivelled little human beings cowering behind a screen.

    My kids are thriving now. Boo will have that chance too, it’s written between the lines of what you write and how you write it. Your second paragraph is the most telling – it sounds like you no longer need to be so resilient against the fact of his disability, but it’s the resilience against the process that you’re finding hard. It is hard – really hard – but I’ve got no doubt that you’ll all get there. None at all.

    If you haven’t stumbled across it already, the Mumsnet special needs community is wonderful – people who genuinely get it, and people who genuinely know their shit when it comes to taking on the people who hold the purse-strings. Link is here – http://www.mumsnet.com/Talk/special_needs

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    Reply
  8. Kiran Chug

    This is so wrong. Wishing with all my heart things were different. I know it doesn’t help, but please know that I, like everyone else who has read and commented, do care. We all wish too that we were the ones who could change things. Much love x.

    Reply
  9. Michelle Davis

    You and Family Boo continue to amaze me with your resilience and energy in the face of all that you have to do. I wish I could offer some constructive advice or practical help, rather than following your story from afar x

    Reply
  10. Hannah Staveley

    Ha I so know the feeling with this we had the same thing with my daughter was told she could have a specialist buggy got to the appointment and the lady went out as I said thought she was getting fitted for a buggy came back No because they don’t do them for 4 year olds no pint lol this is a lie as they do but they are so much more so ended up with a wheel chair for her all because of money grrrrrr so mad .

    Reply
  11. StephsTwoGirls

    I’ve said to someone myself today, before reading this, that it is money which is the problem. No-one thinks of the child first (other than the parents of course). It is so frustrating and like banging your head against a brick wall. It’s wrong that we should have all that extra pressure on top of the extra challenges. I’m glad you’ve found one brilliant practitioner, but they should ALL be like that. I really hope the nursery comes through for you, and soon x

    Reply
  12. oliverjonesmummy

    I’m so sorry to read this. I have experienced a tiny bit of what you have. Our request for 2 x 3 hour respite sessions a week had to go to a panel for approval then be approved for a suitable care provider..but we’ve not managed any sessions as Oliver’s been in hospital since August.. yet my employer has asked if there is help to have a care provider look after Oliver so I can come back to work. Erm…..

    Thinking of you and hoping things work out

    Xxxx

    Reply

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