Guest post: SN parenting: 'it's money - not our son's disability - that casts a shadow over our lives'
When her son was diagnosed with cerebral palsy, Mrboosmum knew there would be challenges - what she didn't anticipate was how much his quality of life would be dependent on money, and the cruelty of being told that the help he needs is too expensive
Posted on: Mon 02-Feb-15 11:16:22
(61 comments )
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.
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.
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.
That is appalling. I don't know what to say.
Message withdrawn at poster's request.
Totally agree. We've had the same particularly with OT 'recommendations' - they may as well (and sometimes do) hand you an overpriced catalogue and point to your credit card.
there is no easy answer to this other than you must keep going. Your doing great.
This is so shocking. I had no idea.
I am so sorry to read this
I'm all in favour of paying more taxes to improve services
it seems almost taboo to say its actually lack of money that makes life harder but I can see how its so true
Thank you for all of your supportive comments. It's so overwhelming at the moment. So much is on the line. But as I say, I know we are lucky. We are certainly not alone and many are in much more difficult situations.
Message withdrawn at poster's request.
This is so true. Our story is very similar, my ds is nearly 13 and is a quadriplegic, again it's cerebral palsy caused by birth. Financially I have to agree with you, every little thing he needs costs so much more, and without him being able to keep bedding on at night our heating bills are astronomical. Amid all the meetings and Physio sessions and wheelchair adaptions there's the additional pressure all that puts on a relationship - I've been going it alone for just over 3 years now...
I wouldn't change any of it though, ds constantly amazes me with his good humour and the smile that shines from his eyes. His speech is only understandable to familiar people and he usually communicates with an eye-controlled computer.
He is my inspiration and the one thing that keeps me going. I'm a proud mummy and I wouldn't change him for all the world.
So so true. And you said it so well. People haven't got a clue.
The cap on funding to meet your son's learning needs is UNLAWFUL.
Go to IPSEA www.ipsea.org and ask for one of their trained volunteers to help you get what you are entitled to by law.
It is one more fight, but one where a charity will help you hold your local authority to account.
Completely agree, the amount we've spent on orthotics last year alone ran into the thousands... Never mind the extra clothes as they go at the knees because he falls over all the time. 9 year old with CP here. My dream is to have 10k each and every year to spend in therapies, equipment and clothing/ transport needs, then we might be getting close. We are lucky that school/LA are supportive at the moment. Secondary school is shaping up to be a different story though.
We are in a similar situation,I have a 7 year old daughter with CP.
Financially,we 'manage',I have just started a small part time job(to save my sanity) after nearly 7 years of being a full time carer for my daughter.For this privilege my tax credits have been lowered,but I WANT to work to make life better(mentally,more than anything)for all of us.
Everything you need for a child with additional needs is so much more expensive.We struggle with buying toys for her,as we cannot afford specialist SN toys,which she would love but we cannot afford.We were lucky to spot a bike trailer last year in a charity shop,so we can go biking with her,we could not afford a specialist trike.We had to ask for money from the Family Fund to get her an iPad,so she could use it to communicate(she cannot speak,due to her CP),as we could not afford to buy one.
My husband works full time,we claim DLA,but our life would be so much easer if we could afford some necessities,without having to apply for funding all the Tim
We didn't ask to have a child with a disability & we do the best we can for her,but life is hard financially & I dread what the future holds for us all,especially her.
Hi mrandmrsboo, I've got two kids with special needs, now in their teens and tweens. I've been reading your blog for a while, and I just wanted to say thanks.
It's probably not much comfort with everything you've got going on right now, but please know that what you write and how you write it isn't just moving - it's inspiring too. It's helped me rethink about my early days bringing up my kids, and it's galvanised me to keep fighting for my kids too.
People usually think that coming to terms with your child's disability and accepting it is the hard bit. It isn't - sure, it's not a piece of cake, but most people I know have got there,
even my knuckle-dragging, Mail-reading FIL, ffs
The really hard bit - the part that's brought me, and most of my friends to our knees at various points on the way - isn't the disability itself. It's the process of getting our disabled kids the support they need, when they need it, and how they need it, against parts of the state that refuse to meet their legal obligations without a brutal and bloody fight.
I really wish I could say that your fight is an unusual one - that the state has somehow singled you and Boo out for cruel and unusual punishment - but I can't.
Right now, in a supposedly developed and tolerant state, there are tens of thousands of Boos out there being denied their future. There are thousands of parents in Boo's mum's position, being forced to choose between solvency and meeting their child's complex needs.
Boo's family's tale is terrible - but what's just as terrible is that this is business as usual for many local authorities across the length and breadth of the UK. And no-one with the executive power to do anything about this scandal gives a fuck.
mrandmrsboo, I don't know if you've had a look already, but the SN boards on here are a genuine lifeline when you're feeling low, or in need of insight or inspiration. If things ever feel unmanageable, or you just want a friendly word with people who get it, pop over....
Shocked & saddened...but glad your son has you! Nothing beats a good Mum xxxxx
Echoing ugger - It defies belief to see parents fighting battle, after battle, after battle for what dcs both need and are LEGALLY entitled to.
Someone thinks halving the size of the state is a good idea. The state is on its knees and its knees are crumbling.
Your son sounds wonderful. I'm working with young adults with profound and multiple disabilities. I really admire their parents and the lengths they go to to get the best they can for their children. I work with one young woman in particular and even though she can't speak and has limited communication she is also an inspiration. I like to think we have a good bond, she has such a strong character and really makes the most of her life. I wouldn't know what advice to give you but maybe to try and keep some balance in your life between your devotion to your son and your own 'self'. Don't forget yourself and try and surround yourself with genuine and supportive people.
It's the fight for what ds1 needs that is exhausting me. Getting his diagnosis was actually wonderful,because finally, finally I had a name for what he has. It's the battle ever since that is making me so very, very tired.
This is so ridiculous and makes me so angry. How many disabled people are there in the country? Not that many, I don't think. I'm sure it would save money in the long run and VASTLY improve quality of life if there were unlimited funds available for things which are needed like this. I'm sure somebody will come along and scoff at the idea of unlimited. But really. We can afford god knows how much on the olympics, on Trident, on various things but we can't buy a disabled child a drinking bottle, or a seat that allows them to travel in a car?
They say there is a lot to be seen in the way that a nation treats its most vulnerable inhabitants. I think this is poignant here.
I wept reading your post OP. It makes me so sad and frustrated that you are facing these financial constraints FIFTY BLOODY YEARS after my parents faced the same. My parents were among the first generation to refuse to leave their child in an institution, and they paid the price for that. Years and years of fighting for every little thing.
When my brother was a teenager and growing out of his wheelchairs fast, my parents were told there was no more funding until he turned 18. My dad and his engineer friend built him one in the shed. Another neighbour sewed the covers. Two years later they had to do it again.
Forty years later and you can't get the right friggin sippy cup!!! Bertie is so right - there are 175 adults with profound disabilities in my borough. 175 people out of 300,000, and they have no more day services as the borough can't afford it apparently?
I wish you strength and courage for the future Mrs Boo x
Your description of the look of horror on the sonographer' s face was exactly what I saw on the doctor's face when I walked into the SCBU and an ultrasound was being done on my son's brain. That look of horror has stayed with me 20 years. It was the moment I knew my sons life was not going to be easy.
I wish you and your family all the best and am sorry to see people are still struggling just to get what their children need.
Thanks for writing this. We have fewer equipment needs for which I'm thankful but I find the battle with the state over entitlements soul destroying. Their main aim becomes keeping costs down rather than help families with disabilities. Do unfair that alongside everything we have to deal with the state steps in and makes it harder.
My son has a talker - it's his voice. It cost 5K & was purchased by an anonymous mumsnetter as it's impossible to get funding for. It changed his life. He broke it yesterday. Luckily I have been paying the £35 a month warranty that allows one incidence of accidental damage so it won't be lost. I don't know what will happen when he breaks it again. We have been looking at getting an iPad app, but the one he needs (it's related to his talker) is £215.
When he turns 16 this year, we will have to pay the cost of his home to school (and maybe home to respite) transport. He cannot travel by public transport (he requires 24 hour care and 2:1 when outside the home).This is distinctly dodgy legally by the way, but as of yet there has been no test case so our council charge anyway.
Meanwhile he went 6 months without respite (making me keeping up with work very difficult), and now the whole family is in crisis the council respite place that is meant to step in are too short staffed to deal with it. They're short staffed because they laid off a load of people last year. Kids are always been sent home early or told not to come in due to short staffing as well. It's actually dangerous in our house at the moment, people are getting hurt. SS know this, they know the younger children are at risk as well, they do nothing because there are no services. DS1 needs emergency care via CAMHS. Everyone (school, SS, health) are trying to get that emergency access. All we've been told so far is 18 week wait. He can't wait 18 weeks, everyone knows that.
Every bit of our life at the moment is difficult because of money. There's no money to help our son. My ability to earn has taken a huge knock (if I could survive on carers I would - I can't). Essential equipment has to be provided by us. And all I can see is it getting worse.
My NT children have not been affected by the cuts in the way my severely disabled son has. I fear desperately for his future.