Stuck

Ever had the lift break down in your office and had to take the stairs ten floors? It’s annoying, isn’t it?

Now imagine you couldn’t get in or out of your own home without the aid of a lift. And when that lift breaks down you are either housebound or stuck in your garden in your wheelchair, unable to get in.

Then imagine that the lift has broken down almost every week since it was fitted over a year ago. And that you have no emergency contact or plan in place for when it breaks. Not for want of asking…

That no-one wants to take responsibility for the problems. The very long list of problems that don’t isolate the fault to one part but suggest a fundamental issue with the lift in its entirety.

A lift that stops operating weekly because the door catches decide to do their own thing.

A lift that stops working completely when it rains.

A lift that has been known to open before the platform has reached the top, leaving a gaping two metre drop in front of you, your 4 year old in his wheelchair, or perhaps one day it will be your 6 year old daughter who likes to help by calling the lift up and then accidentally falls…

It needs replacing. But Cornwall Council, who commissioned the fitting of the lift, and who have admitted in writing that:

“The lift is not fit for purpose”

…still haven’t actually done anything to rectify the problem. Sending lift maintenance companies and manufacturers to tinker with bits of the lift every month has not solved the issue that we have a lift that continually breaks down, sometimes dangerously so, leaving us and our son housebound.

Not able to get to school. Not able to get to work. Housebound.

Today, our son has a physio appointment he must attend. We cannot get him there unless we physically carry him down fifteen steep steps. If you’ve ever carried a child with severe hypotonia you’ll know that’s something you really don’t want to do. As I found out two years ago when I fell down the steps while carrying him, injuring my back and dropping him on his face. The very reason the lifts were fitted in the first place.

I have quietly and determinedly dealt with this behind closed doors, giving both Cornwall Council and the lift companies the time and space to deal with any ‘teething problems’ we might have experienced since the lifts were fitted.

Wessex Lifts have been polite and accommodating and seemingly thorough but the situation remains that we have a lift that doesn’t work, that we can never rely on, and that we are back to where we began, manually lifting a child and a heavy wheelchair, having to rely on our own physical strength and the kindness of the school taxi driver to help.

I am sharing this publicly now, because we have explored all avenues for help within the Council, Dolphin Lifts and Wessex Lifts.

On 8 April 2014, a technical officer from Cornwall Council emailed me to say:

“I can assure you these problems will be rectified” 
 
On 12 January 2015, the manager of the council adaptations team said:
 
“The lifts have only been in place for a year or so and I would not expect the level of problems that have been reported. I would expect Dolphin to visit ASAP and sort out the issues.”
And on 9 July 2015:
 
“When a lift is no longer serviceable then we will consider providing a new lift through a Disabled Facilities Grant…”
but in the same sentence…
 
“I am very sorry they are experiencing these problems and that I cannot offer any solution to them. I will raise the subject at our next management meeting and update you on any decisions taken.”

And yet here we are, almost 18 months since the lifts were fitted. Stuck.

 

 

Otterly brilliant

Last night, for the first time, my children played together in the bath. Properly played. Splashing each other, laughing together, shrieking, playing with toys. A very normal evening scene in many households I would say. But until now, bath time has not been like that in our house. The Beep has had to play alone, while Orange gets whisked in and out, washed as quickly as I can manage with one hand while trying to hold his slippery, writhing body with the other, leaning precariously over the bath and hoping my hand doesn’t slip or my back give way. Until now, he’s never really enjoyed a proper soak. He loves to be in water. But it was getting increasingly difficult to let him bath safely. He is heavy now but cannot sit up or support his own body weight. I felt so sad for him that this lovely little childhood routine wasn’t really a part of his life. Nothing more than a quick, business like dip, scrub and a wipe and he was out of the water again in under a minute.

All that changed with the arrival of his (much fought for) bath chair, The Otter, an absolutely brilliant piece of kit. I used to think that having specialist equipment in our home would make me feel sad, like our lives were being taken over by Orange’s disabilities, and that the presence of bath chairs, specialist seating or standing frames would somehow deplete the sanctity of our home and render it little more than a makeshift hospital. I realise now that I was quite wrong. Instead, the bath chair has brought back a little normality. Enabled us to do things the way ‘normal’ families do. Seeing my children playing together in the bath so happily and sweetly made me realise that far from just helping to keep Orange safe in the water and to save my back, this little chair has opened up a whole new world of play and fun for Orange and Beep. They played and fought like brother and sister. This, this is what I was hoping for when we decided to have a second child. Their blossoming little sibling relationship is the sweetest thing. But with Orange able to do so little, Beep doesn’t get an awful lot back for all her trying. She has been so desperate to play with him properly in the bath, wash his hair, sing songs, splash and muck about. The joy on her face was unbridled as she sat opposite him in the water, for the first time and they shared a secret joke beneath the bubbles.

What is hard to get to grips with, given how life changing one piece of equipment can be, is how difficult it is to get the right kit in the first place. Many families with a child who has disabilities will tell you how bewildering the early years can be. Adjusting expectations, dealing with emotions and taking on challenges that you never imagined facing. I know from my own experience that while processing and managing all of this new stuff, there isn’t much time or head space left for thinking about things like what sort of chair your child should be sitting in, let alone grappling with the authorities to try and get what you need. We have struggled on for months longer than we should without any specialist equipment at all, partly because I had no idea what was available and partly because it’s so inexplicably hard to get The Professionals to provide it.

Budgets are what they are, but some of the reasons we were given for not being given a bath seat were daft. “He’s under two” and “but social services have to provide it, and you’re not known to social services” were two of my particular favourites. Especially when I knew, via the Professional grapevine, that there was an unused bath seat sitting in a cupboard in an office two miles down the road.

No, what I really needed was someone kind, patient and knowledgable to come to our home, talk through our typical day and discuss gently and openly what type of equipment might help us to manage our days a little more easily. To show me pictures, catalogues, information, to enable us to actually understand what is (potentially) available to us, either for us to ask for from the authorities, raise the money ourselves to buy, or submit an application for a charity grant if the items were unavailable or unaffordable to us. But I don’t know one parent who has been offered this kind of help. Instead we sort of flounder about, catching glimpses of what other families have via their blogs or facebook pages, and wondering where they got it from.

I came across a brilliant website yesterday while searching for ramps and lifts for our new home which, in the absence of my fantasy home adaptation consultant, is quite a good second best. It has an interactive house tool that allows you to explore all the different rooms of a typical family home and highlights all the equipment that is relevant to each part of family life. They also go on tour, doing an annual expo of just about every piece of specialist kit you can imagine. The next one down south isn’t until next summer, but you can sure we will be there, trying stuff out, asking questions, figuring out what Orange needs next…

Learning to speak up

This week I learned a valuable lesson. It’s one I thought I already knew, but events made me realise I wasn’t practising what I preach. Parents, especially of children with special needs, will know that if your child is in need of something that you are reliant on others to provide, you often need to shout louder than you ever knew possible to make it happen.

You will have seen from my last post about our visit from the Occupational Therapist that I was expecting we might get some help with equipment for Orange, now that he is rapidly approaching toddlerhood, in size, if not in capability. But no help was offered. A long, sighing story unfolded about how difficult it is to get equipment provided for small children with special needs. Apparently if you are under the age of two you don’t count. It is a political minefield of labyrinthine scale and it seemed like The Professionals just couldn’t really be bothered.

But a welcome fresh breath of air was blown into the midst when we met Orange’s new community paediatrician, Dr L, on Tuesday. I realised, as she asked questions and probed into Orange’s history, that I was on stilted repeat like a scratched record as I found myself continually responding “well we were hoping for help with this, but it didn’t really happen” as politely as I could, while quietly seething inside at the realisation that, actually, we have been getting very little support for Orange.

Dr L soon stopped me. “You must ask if you feel you aren’t getting what you need. Don’t be afraid to question, to request, to ask again if you think you need more support. You have a right to do so”. And as soon as those words left her mouth, I realised I have been too reticent to question the status quo, even with my flurry of kick-assing a few weeks ago. So, we don’t fit neatly into many tick-boxes…but that sure as hell doesn’t mean we don’t deserve support.

Within 24 hours of our appointment with Dr L, I had the Occupational Therapist back on the phone. An honest and frank twenty minutes later, and we are on our way to being provided with a bath seat for Orange. She also helped me to figure out what kind of car seat we need next, and where to go to get it. And on Monday we are off to see the Orthotist at the White Lodge Centre to get Orange fitted for a set of leg gaiters to help him with his standing.

I also learned, from Dr L, that whenever Orange has an appointment, we have a right to request to see the lead consultant. There have been too many times when we have been fobbed off with a less than competent registrar, namely his last opthalmic appointment, which involved a stressful three hours in the car for nothing much at all. So with the next round of Orange appointments, I shall be speaking up in my bravest voice and requesting to see the consultant. No doubt we will pay for it with interminable waiting times and weary sighs from behind reception desks, but I am armed now with a new sense of direction and confidence to say “my child has complex needs, please arrange for us to see the lead consultant”.

Gradually I am learning the lingo, and the means to negotiate the NHS system to provide Orange with what he needs. Really, it requires the entirety of my brain capacity to manage it at times, the tenacity of a bulldog (which I certainly am not) and the patience of a saint (yes, this one’s a struggle too). One day, I may write a book 😉

So that’s OT then

I can’t decide if I’m cross or just a little disappointed. I suspect I just had rather high expectations of what an NHS Occupational Therapist could actually offer us. Particularly in Surrey, where it seems that unless you are ‘known to Social Services’ (their language, not mine) then you receive nothing in the form of any specialist equipment at all.

Never mind that I can’t safely hold my son up in the bath. Never mind that he doesn’t have a single safe place to sit and play without help from an adult. Never mind that he’s outgrown his baby car seat and doesn’t have the strength to sit safely in a toddler seat. No, Orange’s needs don’t get put first. Surrey County Council has decided that since we are not ‘known to Social Services’ (i.e. a ‘problem’ family or one that is in need of support in many ways but namely financial), we don’t get any help at all with equipment. Our NHS OT cannot give us a thing.
No matter, you might think, we have savings, we have family who can help. We are lucky for sure. But specialist equipment costs thousands. For items that he will soon outgrow we simply cannot spend £700 on a car seat, £2,000 on a special chair, even more on a supportive buggy… Nor can we easily source these items since they are not always readily available direct to the man on the street. There is an unimaginably vast range of specialist equipment being manufactured, to help children just like Orange, and their parents, to live life a little more comfortably, a little more safely, but the doors have been firmly shut in our faces. ‘Buy it yourself, or struggle on, we’re not interested in helping you‘ is the message I’m receiving loud and clear from Surrey County Council.
While I could start on a tirade about how this attitude is just typical of this particular part of the country, populated largely by the status-oriented, the ladder-climbing, the ‘I’m alright Jack’ brigade, I feel my energy is better expended elsewhere. Not only did today’s OT visit prove wildly disappointing with regards to providing equipment, we also came away with very little to add to the daily therapies we already do with Orange, and no prospect of another visit. No, if I want more OT help, I have to go to the “FACTS” group that I’m not allowed to go to because I have The Beep with me on that particular day. If we are lucky, we will get a report from the OT who visited today and perhaps some more ideas down on paper of things to do with Orange to help his development. We’ll stick it on the wall, follow it to the letter, and hope, I guess.
So I have spent the last thirty minutes online, trying to find out for myself what exactly paediatric occupational therapists should be doing. And I have found what looks to be something wonderful. A clinic called Hemispheres that offers something they call ‘Movement for Learning’ therapy that, it claims, helps the natural process of neurological maturation to support physical, sensory and learning development. Their approach sounds like just what Orange needs and something we can all really learn from. A programme that is a little more bespoke, and quite a bit more intelligent, than the ‘put cubes in a cup’ games that were all the NHS OT really had to offer. NHS 0. Mummy 1.