At the beginning of 2014 we got a piece of kit for Boo that was a game-changer. At the time, we were struggling to access the OT service he so badly needed (how depressing that that statement is about as true now as it was over 18 months ago). We had little adequately postural supportive seating for him and the simplest things, the little things, like going to a cafe or going round to a friend’s house were really difficult.
Where to put him?
At that point, I could have him on my lap and carry him better than I can now, but it wasn’t easy even then and even ignoring the twinges in my back, it wasn’t good for him not to be adequately supported. But the GoTo by Firefly by Leckey changed that.
Not long after we brought it, I blogged about that revolutionary and deceptively simple, light-weight liner that can attach to dining room chairs in a few clicks. We took it with us to cafes and restaurants and on family visits. And when Boo got too big for it, we passed it on to another family who I know are very grateful for it.
Roll on to October 2015 and Boo has a new GoTo. It’s not just the bigger size, but a new look and even better GoTo seat that comes (for an additional cost) with a feature that I could wax lyrical about until you have all been yelling at me to stop for several hours. A floor sitter! Here’s what it looks like:
So this mighty (and mightily light – not a phrase that usually accompanies any special needs equipment) piece of kit serves multiple functions. The new GoTo does all that our old GoTo did. We can pop Boo up at the dining room table on a chair like his big sister to eat or play. Or we can take it out and about with us to put in a shopping trolley or swing in the park.
The floor sitter, though, is invaluable for visiting friends and family. Boo’s adapted buggy is bulky. It also gets completely filthy in this wonderful autumnal weather we are enjoying. (You can see the looks of polite dismay when you ask friends if you can bring it into they house for Boo to sit in.) It is impossible to put under a dining room table and puts him at an odd height relatively to any other little people who might want to play with him.
Using the GoTo with the floor sitter, being able to get down on the floor, to stretch out those impossibly tight hamstrings of his, to play on the carpet with his sister is an AMAZING thing to see. Corner seats do exist for children like Boo and they are wonderful. They are also pricey and weigh about as much as my car. This is so portable, practical, postural supportive (and Boo’s needs are complex) and, you know what, it’s pleasing to look at, too.
I am not a person who covets bits of kit or gets excited by gadgets in my day-to-day life. But as the mum to a child with complex physical needs, I dream about pieces of equipment that will make his and, to be honest, our family’s lives easier and better. The GoTo does that. Even better than before.
Some days, when the sun is shining and I don’t expect it to and we have a good appointment (or better still no appointments), I feel unbelievably, superhumanly lucky. I feel lucky that I have two beautiful, caring and lovely kids. I feel incredibly lucky in these dark days to have a comfortable life.
I feel lucky that Boo survived his premature birth. Lucky that he survived meningitis. Lucky he survived sepsis and a massive brain injury (PVL). That despite the severity of his cerebral palsy he has words – indistinct and hard won words, but words, nonetheless. I feel lucky that he is so happy. That he and his sister adore each other.
But then there are other days. Days when people say or do stupid things because you live in a world as alien to them as Mars would be. Days when equipment breaks, or having waited for months for it to arrive (always months longer than you are promised), it comes with a vital part missing or bent by the courier who shows his disgust at the weight of your child’s parcel by banging it on your doorstep. Days when services tell you about how the most recent round of cutbacks will affect your child.
Days when you send umpteen emails chasing things for your little one that were supposed to have arrived or been put in place months earlier. Days when people tell you they will look into it and get back to you that afternoon. (You and they both know that means three weeks when you next contact them.) Days when you register that some of these people are upset by this sorry reality and that others don’t, or have learned not to, care.
Days when you cannot believe that you are still trying to get put in place one of the therapeutic provisions set out in your child’s statement 18 months after the reports setting out the requirement were first submitted. Days when everyone tells you how awful this is. Days when still nothing happens. And then to top it all, days when the lift up to your front door fails and two organisations argue about who is supposed to fix it while you and your child’s ability to get in and out of the house is precariously dependent on how much your back hurts.
Days like these are the cluster headaches of the special needs world. Everyone gets headaches – just like we all have bad days – but few can understand the head splitting intense discomfort produced by these monstrosities. There is no easy cure and if your sanity is to be preserved, to an extent you just have to accept these unpleasant realities.
But it’s hard to accept things that are bad, that even hurt, your child. Really hard. As a family, we have all learned to live with cerebral palsy. That was the easy bit. It’s all of this – all that comes with CP – that I will never get used to.
I know some day, maybe even tomorrow, I will feel better again for a while. But not today.
I am lucky, but I am also sad, disappointed and frustrated that life is like this for Boo and for many, many others like him.
Birthdays are tough as the parent of a child born prematurely. As you move forward through the years, you are thankful that you and your child are still here, even at the same time that you are thrust back to the day of their untimely arrival and to the hopes, fears, smells and noises of the alien environment of the NICU. To say you feel mixed emotions does not to justice to the complex web of feelings you have to deal with.
When your child is, like Boo, one who will never outgrow their prematurity, when their early arrival led to complications that will affect them for their whole lives, these feelings are mixed with others too: maybe grief, maybe anger or sadness.
But if you are reading this as the parent of a premature baby or a child born with disabilities, let me tell you what many have told me in the past: birthdays get easier. I didn’t believe these people when they told me. But they were right. They do. Don’t despair. Things get better. I promise.
Boo’s second birthday, though, was hard. It was so difficult to remember all he and we had been through. It was hard to see how different he was from his peers; how hard his future looked set to be. But we celebrated anyway partly because we wanted to and because you have to right? And truth be told, we had a lovely day, a pretty typical (note: I can’t use the word ‘normal’ now ever) toddler birthday even though ours couldn’t toddle and likely never will without aids that are the size of a studio flat.
Until, that is, the cake was eaten, the wrapping paper was in the recycling bin and the presents temporarily stored and I sat down with a glass of wine and my lap top. Not to work, as I usually do. To apply for our son’s blue badge so we could park in disabled spaces.
I had been told some weeks before and not very politely by our local blue badge office that we were unlikely to get one because Boo was too young, even though the government website indicates that children from the age of 2 with significant health needs and disabilities are eligible to apply to this scheme. (Apparently if Boo was a ‘normal two year old, he would likely need to be carried in and out of the car anyway’. Hmmm come try and carry Boo, I thought. I’ll show you what carrying is. And stop using the ‘n’ word, OK?) I applied regardless.
Boo had just received a wheelchair buggy and it was enormous. We needed space to get it round the car and put him in it safely. Boo may have born prematurely, but tell his body that. He has always been tall. Very tall. And while his weight is perfectly respectable rather than overly impressive, he can’t hold any of it himself. He could not and still cannot sit independently. Pick him up and he is as unwieldy as a sack of potatoes. No: a sack of potatoes where the seams have split and things are threatening to fall out of the sides. And that’s only when he’s not stiff as the proverbial board. Carrying Boo is a hold your breath kind of activity and not only because you are trying to engage that core you keep working on for fear that one day you will not be strong enough to carry your child. You hold your breath in case he or you fall as he goes into extension or he loses all his muscle tone and dribbles to the floor like jelly.
It was clear to me and to the healthcare professionals who had persuaded me to do the application that we needed a blue badge. We needed the ability to open his car door to 90 degrees. We needed the space for safety. His safety. I submitted all the medical evidence, lamented that this was how I was spending the evening of my son’s second birthday and hoped for the best. We got a blue badge, although only for a year when, we were told, we would have to reapply, because everyone knows that severe quadriplegic cerebral palsy can just vanish overnight when you hit 36 months. I reapplied just before his third birthday and we received another one for him for a few more years.
The blue badge makes a huge difference to our lives. I won’t lie, the financial benefits are considerable. If I am lucky enough to get in one of the free disabled spaces at our local hospital where Boo has so many appointments, that can save us between twenty to forty pounds of parking fees every month. But to be honest, for us, the safety issues are paramount. Being near where we need to get to with huge bits of equipment. Being able to get Boo out of the car safely. Being able to do so without putting any more pressure on my struggling back with its bulging disc than I have to.
But let me also say this, because a couple of very awkward and upsetting incidents recently have made me feel like I need to say this publicly: I get NO pleasure out of having to have a blue badge for my son. I would give every penny and every limb and vital organ I have for my child not to be disabled. I can’t believe I even have to say this.
And yet, since having the blue badge we have been challenged about using it on more than one occasion. The problem lies, like most problems, in ignorance. When you say blue badge holder, many people obviously have a set vision in their head that is sometimes very far from reality.
Not all drivers of cars with blue badge holders in them are elderly. Not all blue badge holders drive. My son, for instance, will likely never be able to drive himself anywhere. But people see me, a just about on the right side of forty-year-old and see me pull into a disabled space and think I’m a lazy person who can’t be bothered to walk more than five metres to the shops. Or they momentarily clock the kids in the back and think I’m one of those people who thinks parent and child spaces and disabled spaces are the same things. (Do such people really exist?)
We are frequently stared at when we pull into blue badge spaces and usually anxiously pull out the blue badge and clock from the door bin before entering car parks to wave them in the faces of the disbelieving. On more than one occasion, this has not been enough.
A few months ago, while on a trip with relatives to a National Trust property, a driver who pulled into the space next to us said very loudly: ‘Parents are so ****ing inconsiderate when they think because they have a buggy they can park anywhere. Don’t they know these spaces are for people who are really disabled?’ My cheeks grew red and hot and the tears burned behind my eyes as I worked out what to say. Thankfully, I didn’t need to because my outraged sister replied instantly: ‘My nephew [who we hadn’t yet got out got out of the car] has quadriplegic cerebral palsy. How much more disabled would you like him to be to park here?’
Just a few weeks ago, another person, in the most unlikely place you could imagine, banged (yes: banged) on our car window as I parked in a disabled space, and shouted in a tone so loud and hostile it caused both of the Boos to cry that we couldn’t park there and how selfish we were. When we showed our blue badge the individual became flustered and embarrassed but continued with a tirade of abuse about my parking ability. I may not be Louis Hamilton, but I was parked well within all the lines of the space as marked out.
Blue badge holders and people like me who drive around a blue badge holder (the badge is Boo’s not mine and I would NEVER park in a disabled space if he weren’t with me in the car) know better than any how much spaces designed for disabled people are abused by those who are ‘running late’, ‘just getting dry cleaning’ or ‘buying fags’ or ‘the paper’. Such abuses of a facility that materially benefits people in a way non-disabled people may well struggle to understand are worse than thoughtless.
But let me be clear: no one has the right to make judgements about whether a car pulling into a disabled space has a right to be there or not until they have waited to see the blue badge pulled out. Many blue badge holders are not drivers but passengers who can’t immediately be seen through a long stare through a windscreen. If either of the women who have shouted at us recently had taken one look at Boo it would have dispelled any suspicions they had about whether we ‘deserve’ his blue badge or not. But this is also beside the point. Lots of disabilities are not immediately visible. This doesn’t make them any less real.
The occasions when we have been challenged about using Boo’s blue badge have been awful. They have been awful because no one likes to be told off in a public place, not least when you’ve done nothing wrong. They are awful because you are being treated like one of the thoughtless people who abuse blue badge spaces and make you and your child’s life harder (‘oh sorry, I was only getting my lottery ticket’).
Mostly, in my experience, they are awful because they turn the most simple things, like going to buy milk, going on a family day out, or return a book to your local library into another thing in your life about disability. They remind you that there is no going back. That your family is different. That people don’t understand.
No one wants people to stop the abuse of disabled parking spaces more than people like us, but you know what? Why not leave it to the traffic attendants to sort out? Blue badges are not your problem.
And one final thing: they are not our privilege either. I cried throughout the entire duration of the time it took me to fill out the online application and payment for Boo’s blue badge when I did it on the night of his second birthday and I wept more tears when I had to renew it 11 months later. I would give anything for us not to have that bit of blue card in my car, even though we need it for Boo’s safety and our own. Treating us as if we are lucky to have a blue badge is almost as awful as accusing us of abusing a blue badge space when we are entitled to use it.
I am struggling this week. And I am struggling to understand why I am struggling. But I have decided to stop thinking about that. I just haven’t got a cubic cm of struggle space left in my head.
This week I cannot cope. With the broken promises. With the endless list of things that have ordered but not arrived for Boo. With the things that have arrived broken or unusable. With the lies people tell you.
Come to think of the number of times I have had to confront every single one of these things this week alone, then maybe I can’t cope because it would be unreasonable to do.
Some weeks I get frustrated by everything but manage to shrug it off. This week I just can’t. I am more tired than I thought it was possible to feel. I feel in a stupour. I can’t remember the simplest things like whether I have eaten or been to the toilet in the past four hours. I know this isn’t normal. I feel semi-conscious. I am worried about myself. For my children if I get ill.
I feel like I’m breaking.
This week already, I have already had four meetings about Boo. Four. In three days. The first was with yet another of the nice, well-meaning people whom our local authority shuffles around (she has been in post for 8 weeks on maternity cover and is moving to another position again next week). Just as I was beginning to like her. She was appalled by some of things that have been said to me in the past week about Boo’s transfer to EHCP and possibilities for schooling. I kept my cool throughout the meeting, but was pointed and forceful. I worried I was being too forceful.
I felt the need to apologise (goodness knows why: I was polite, even toned, didn’t raise my voice). The words came out before I even realised what I was going to say: ‘You must dread meetings with me. I’m sorry. I have to stay angry in situations like this. If I didn’t, I would just break down and I made a decision a few months ago after a meeting in which it looked like I was going to lose Boo’s nursery place and my job and home that I wouldn’t allow myself to be that person in front of professionals any more’.
She looked so sad. She told me I was not alone. That she cared. That she could see we were being treated shabbily. I’m sure she does feel and think those things. But it won’t help us. She will be gone next week. Moved to another job within the service.
My words hit me hard and took me by surprise. I hadn’t realised how hard I had been trying to keep it together for the past few months. No wonder I am struggling so much at the moment.
I hadn’t realised either just how much I want to find an emotional middle ground I have long-since lost. The ground between frustration (not with Boo, not with cerebral palsy but with the systems and services that dictate his quality of life much more than CP does) and utter sadness. There has to be a place between anger and tears. I need to find it badly. I just don’t know where to look right now.
Well, best laid plans and all that. Just as I felt the stars were aligning and I might get back to the blog and the little piece of sanity it offers me, Boo got struck down by an awful bout of chicken pox. Thank goodness it’s now behind us.
And thank goodness he got it when he did. When his big sister had the pox a few years back she got off relatively lightly. I knew we had been unbelievably lucky; friends of ours have an otherwise totally healthy daughter who ended up hospitalised with it and was in a dreadful state. But honestly, I never knew how awful it could be until Boo was put on a massive dose of steroids to stop his infantile spasms. We were told that if he so much as came into contact with anyone who had the virus for the months he was taking the medication or for the three months afterwards it took to get it out of his system, he would need to be hospitalised as it would likely kill him.
Unsurprisingly, since then I have seen chicken pox differently. I remain mystified that the vaccine is not readily available in the UK. I know it is not 100 per cent effective, but the results in countries like the US where it is available show the benefits to all children, but especially for vulnerable children like Boo and adults with health complications. Thank God he waited until now to get it. That he waited until a time when he just (just! – how our lives have changed in three years) had to worry about cerebral palsy rather than epilepsy and steroid suppressed immunity. Another thing we can be grateful for.
There are lots of those, actually, and I’m mindful that there have been few updates on Boo’s progress in my semi self-imposed blogging hiatus, so I thought I’d post a few heavily edited highlights today so you know what’s going on in Booland.
OK, I’m going to start here because this is the weakest link in Boo’s development. It always will be, although it breaks my heart a little less to write that now than it once did. I would like to tell you Boo can sit independently. That he could roll or crawl, stand and walk.
I don’t know if he ever will do any of these things. But we continue to work on every single one of them and he is making incremental progress in all areas. Small improvements emerge over time. Sometimes they are so small we can’t see them and it takes someone who hasn’t seen Boo for months to say, look how well he’s doing. We love these people! These people who can see what is right in front of our noses, but like the blooming flower, its process has become almost imperceptible to us who admire it every day.
The downside of the incremental progress is that there is no part of Boo’s physio programme we can drop, but the upside means we haven’t given up on anything (although sometimes my back does). Boo is sitting better, propping more reliably. He stands taller and will step enthusiastically (in fact it is ALL he wants to do) with support under his armpits. He sees no boundaries. Neither should we.
Because our therapy programmes were so long they were driving me demented, we have been forced to prioritise and on the physio side of things, this is an area that we are really focussing on in preparation for Boo starting school in 2016. He has had a walker for over a year. He can’t use it. He gets horribly frustrated in it and the way his body twists and turns in rage is frankly heartbreaking. I’ve gone through four pairs of jeans going up and down my kitchen with him on my knees trying to help him, but it was too much all round. We gave up using it for a while. Turns out we may just not have found the right walker. We recently tried another and, oh my goodness I just want to squeal … Fingers crossed, will be getting one soon. This will change all our lives and we cannot wait. More to come…
Then there’s Wizzybug – of Boo’s Ug-Ug as he calls it. Up till now we have only been able to use the Wizzybug in the confines of our
therapy suite dining room and kitchen as we have steps up to our front door and getting it outdoors was too difficult given my decrepit back. But now we have finally had our front adaptations done (a right saga) and one of the many terrific outcomes is being able to get Wizzybug to see the light of day. Boo is still fond of circling and the finer points of joystick control are a work in progress, although he can go in a straight line for much longer now. We are completely and utterly determined to get him to the point where he can use and electric chair safely and reliably one day. He’s enjoying it so much and we are so confident we will get there that we now have a bigger battery for the Ug-Ug thanks to the lovely, lovely people at Designability so we can go further and further. Watch this space…
I think this is the area that Boo is coming on in most, although his speech is still very delayed, indistinct to other people (although rarely to us now) and he finds it hard to put more than 3 or 4 words together unless they are in the form of the Mr Tumble theme song, which he can sing right through. (Justin Fletcher, we LOVE you!) The move to preschool and being with big kids has helped dramatically, as has his good old-fashioned determination. He wants to be heard and we just keep listening until we get it. We are also pushing for trials of communication devices. Boo will never be able to write due to his poor hand function, but we live in hopes that an AAC touch-screen device will be within his literal and metaphorical grasp one day. We’re working on an iPad at the moment using Gridplayer as we await something through the speech and language service, but he tends to drag his fingers rather than point and let go and the symbols are a little small. We’ll get there though. We’re determined that he will be able to tell us all the things we know are going on in that crazy little head of his.
Again, there have been some brilliant small gains here, too, thanks in large part to Pirate Pete. After 12 months – this is no joke, because I have completely lost my sense of humour about this – we finally have a potty chair Boo can use and we are starting potty training. Again, the pox has got in the way but we so want to help Boo achieve this for himself if at all possible. At the moment he uses the potty successfully most mornings. The rest of the day is more of a challenge – i.e. a complete flop – but if he can do it once we know he can do it twice, three times and more a day. This is how every piece of the Boo puzzle works. One step at a time. And then one day he’s striding ahead and we’re all breathless watching him.
So, that will do for now, I think. There’s more to tell, but if I don’t tell you now then I have to blog again. And I really need to blog again, so I’ll stop. Thanks for all your lovely comments and messages about me returning to blogging. I really appreciate it.
I’ve written on the blog many times before about the sense of weight and guilt that comes with Boo’s enormous long list of therapy goals. We have targets for physio, SALT, and OT not to mention our own private goals for Boo.
The lists are huge. Not metaphorically. I mean very literally. They are huge! They live on our fridge. Don’t use these as a diet aid, by the way. Seeing them on the fridge door makes me want to eat my body weight in cheese and double cream whenever I look at them.
I’m a list kind of person. I am what the self-help industry would call goal-oriented in my personal life. I have a long-term plan. I break it down into steps. I do my best to stick to the plan. And will usually flog myself until I have achieved what I set out to do.
But I can only help and encourage Boo. I can’t make his body do things it struggles with. And I have no interest in making his life any more difficult than it already is.
One of the biggest mental adjustments I have had to make since having Boo is letting go of goal-oriented me. For ages I tormented myself with the ‘will he walk’ question. No one knew, of course, whether this would happen or not, but most thought it unlikely based on the extent and nature of his brain damage. But then someone gave me a glimmer of hope. ‘If a child sits unaided by two there is a very good chance they will walk (maybe with a walking frame) by the time they are five.’
I wish they had never told me. Hope can very quickly turn into a stick to beat yourself with in this here life of ours.
I crippled my back trying to get Boo to sit before his second birthday. I was fixated on this happening before he hit 24 months uncorrected. When that was clearly not going to happen, I counted every darn day of his eleven weeks of prematurity and went for 24 months corrected. That date passed too.
Boo is now over 3. He still can’t sit unaided for more than a few seconds and cannot be left alone in this position. But we have just tried a new walker which we are hoping to buy and he steps in it in a way that makes the Grand Old Duke of York look like a complete amateur. Like all the amazing kids I have met since Boo’s birth, he just does things in his own way, on his own schedule. This is goal orientation Boo style and it is beautiful to watch.
There was a time when I felt the fading prospect of independent sitting with great sadness. Now I’ve adjusted. My sense of time is much more elastic now. I worry less about where Boo is relative to others. Frankly, that way madness lies and we celebrate each and every inchstone Boo meets whenever is the right time for him.
But of course, sometimes, I have a wobble and forget all I’ve learned. Children’s parties are a particular trigger (if he gets invited to them at all). Lugging Boo round a soft play for an hour the other week so he could join in while all the other kids ran hysterically like puffed out beetroots who had had a week’s sugar intake in a minute while their parents drank coffee and talked about the inequities of catchment areas was a weak point for me, and meant I couldn’t walk with a straight back for 48 hours. Sissyboo’s sports day last week was another.
And then there’s the biggy on the horizon. The milestone we can’t dodge or avoid. It will just have to be met by hook or by crook and whether he or we are ready or not.
Next September Boo will start school. That may be 15 months from now. That may seem like an age. In special needs elastic time, though, it really isn’t. It really, really isn’t when you consider all the things that we would like to have set Boo up to be able to do before he starts school. There’s joystick control so he can (please, please let this happen) learn one day to move himself around. There’s potty training, so important for his dignity and for others’ perceptions of him (which will in turn, of course, affect him). There’s his ability to use an AAC device because he will never be able to write. And then there’s the four pages of A4 targets on the fridge.
It feels totally overwhelming. Impossible. Even with 15 months.
But it also feels imperative. We have to set him up as best we can. We just have to try our best to achieve these things with him. But we also have to let him be a toddler who can’t toddle, a little boy whose life can’t just be about goals, but has to be about living. About play. About fun.
I don’t know how to square this circle. I know that school doesn’t mean the therapy train stops (more’s the pity). I know that Boo will continue to learn (that’s the point of school, right?). I know (I hope) we have time to help him. But I also feel totally suffocated by the prospect of the next 15 months.
Have we made the right choice of school? Will we get that choice without a battle? Will our LA get their act together enough even to transition him to an EHCP before he gets there? Will we have done all we can to ensure he has the smoothest transition to school possible? Will it be enough?
I just don’t know. And that’s hard to deal with. Really hard.