When someone tells that you your child will be disabled your world crumbles around you. I will never forget the day that I had to hold down my beautiful, screaming baby boy, three weeks before he was supposed to have been born, so that he could have his fourth CT scan since his premature delivery at 29 weeks. The sonographer didn't even bother to hide the horror on his face as he looked at the screen. I'm no expert, but even I could see that there were black circles where there should be white masses. My son had a brain injury. Things would never be the same again.
It took another 18 months to get the diagnosis that our son had severe quadriplegic cerebral palsy, and we had hundreds of appointments in that period. They crushed us - every appointment I attended with my lovely little boy, gurgling and smiling at me, seemed to end in a catalogue of things that I should not expect him ever to do: sit, walk, talk, eat, engage with people, make friends, or even know who we were. The lowest point was when a prematurity consultant told us ‘we don't use the term vegetable any more, but…’. I sobbed for three hours afterwards.
When I think back to those appointments, I can remember my deep, visceral fear - but now, they are only memories. Early intervention makes a huge difference to children like our son. That man was wrong: at nearly three, he can't crawl, stand or walk independently, but he is bright and funny. His laugh is incredible. He has lots of friends and an amazing, unique bond with his sister. He knows ten colours, some basic shapes, and every day he tells me that he loves me: ‘Ay uv ooo, Mummm’.
Although his challenges are many and I wish he didn't have to face them, we accept them. This wasn't a world we were prepared to inhabit, but we do. We can't imagine (and we don't want to imagine) our son any other way, and we are optimistic - now we see his life as one of potential, rather than of limits.
But – as any parent of a disabled child will tell you – there is something that casts a long shadow over our lives: money. It's all about the blooming money.
Of course, raising any child doesn't come cheap, but when your child is disabled, the costs rise astronomically. Our little boy can't drink out of a sippy cup for example, so he has to have a cup with a straw which is recommended by his speech therapist. It's about £15. Not crazy, you might think – except that it has a design flaw, which means that the straw has a shelf life of a couple of months. And you can't buy the straw separately. And of course, we have to have two at any one time. That's nearly £200 a year on a drinks bottle. There's also the £100 we've spent on different types of cutlery – all recommended by our occupational therapist, all with a waiting list of about 8-12 weeks for a free pair to try - because our son is desperate to self-feed. None have worked, so I'm about to order some more.
And there's the big stuff: the £2,500 we have to find for a new supportive swivel car seat, the £1,600 we had to find for his fabulous trike. I could go on.
We are endlessly being asked to make up for cuts in our services, which vary in provision dramatically from one Primary Care Trust (PCT) to another. Take his glasses, for instance - if we happened to live near a hospital that dispensed glasses, each £60 pair would be free. The same goes for his specialist orthotic footwear, no longer funded by our PCT, which cost £120 a pair. His record for outgrowing them is two months.
He needs these things, and dozens of other things, every month. I don't resent this – I would give him the proverbial shirt of my back – and I do understand that someone has to fund these items and that resources are scarce. I also get that I am lucky. I work, as does my partner, so we can save and buy these things. But we have had to make some tough decisions: selling things, denying ourselves and our other child.
In other circumstances, there are no decisions to make. You are rendered utterly powerless and it is soul destroying. You are told of treatments that would help your child or equipment that is ‘essential’ to stop further health complications, but that waiting lists are too long and budgets too tight for you to access them. I have seen therapists cry when they are forced to deliver such news. This is why parents jump out of planes and walk over hot coals - to raise the money to buy their child a bed that will help with hip displacement, or a walking frame another hospital in another county would have loaned free of charge.
And in our case it could get a whole lot worse very soon. In order for me to stay in work, our son attends the same mainstream nursery that our daughter attended. We pay a premium for this, and he has a 1:1 support worker to be his arms, legs and voice, as they don't always cooperate. We are locked in a battle with our Local Authority over how much 1:1 support they will offer because they cap provision based on age. It is cheaper for them to push me out of work and onto benefits than to support our son with enough hours so that I can continue to work and pay taxes.
If our Local Authority won't budge it is devastatingly simple: we will lose our home, one of the few connections we have to our old life. We will have to find accessible housing, likely in another area, and might have to go to the back of all the waiting lists for therapies and equipment we have slowly clawed our way up over the past few years.
Cerebral palsy places huge demands on our son and presents enormous challenges in his life. But honestly, what most threatens his cognitive and physical potential, what crushes our spirit and our resolve, is money worries and austerity measures. And we are some of the lucky ones. For now, at least.
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Guest post: SN parenting: 'it's money - not our son's disability - that casts a shadow over our lives'
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MumsnetGuestPosts · 02/02/2015 11:16
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