This post sums up the whole process of getting my daughter her wheelchair, from referral to her first outing and all the bits in-between. The practicalities and emotions of paediatric wheelchair referrals…
My daughter has just turned 5 and is half way through her Reception year at school. She is not coping physically at all, just the effort needed to be in an upright position all day and to sit at tables to work or play with her friends is taking its toll. This coupled with the new and exciting things to learn, friends to make, a new environment to explore, playtime, lunchtime, P.E. lessons, sitting in assemblies, lining up and learning new skills, it is all flaring her pain and fatigue to a level that she has never experienced before. She is falling more, her feet and ankles sprain from walking as her muscles struggle to hold her together at all and she can’t cope with the simplest thing; like putting on a seat belt in the car or one of her older brothers asking her a question. Daily meltdowns have become a normal part of her life as she just cries because it is a release for her emotions and her pain.
At this point her therapy team are keen to get a plan in place at school to help her and go into school for a multidisciplinary meeting. It is in this meeting that her occupational therapist decides that it would be appropriate to refer her for a wheelchair for high pain days and days out. To help to pace her days and to reduce pain and fatigue. At this point I’ll try anything.
The assessment day for the chair is finally here. Perfect timing as we have been using a running pushchair this summer and while great for days out in the park, it’s been impossible to navigate around the narrow Cornish streets and will not fit into a shop. Now the weather is changing and we will be doing more activities indoors, a wheelchair will give us the opportunity to still get out and about. I’m nervous, it’s not in the bag, this is an assessment of needs and she looks ‘OK’, I’m aware of that. I’m prepared to explain our case because I don’t know what we will do on a school trip, a family day out or a shopping trip to Uxbridge if it is not approved.
What I hadn’t prepared myself for was the rush of emotions as she tried a chair for size. Seeing her sat there, with her beaming smile, telling me just how comfy the chair was broke my heart. Never, did I ever imagine one of my children using a wheelchair, even part time. I held it together, just, well enough that only the adults noticed that I was holding back the tears. Rubie was offered a pink chair by her therapist, and her smile grew three more sizes.
In 8 weeks she will have her wheels. Maybe by half term.
Half term has been and gone and its taken a lot of chasing own the telephone to finally get this date in the diary (weeks of calls in fact) but the day has finally arrived. It has been fourteen weeks (give on or take a couple of days) since our initial assessment.
Our daughter is very excited about her bubble gum pink wheelchair delivery today. She has been counting down the days. She is mature for her years and she understands how much a chair will help her, the freedom it will give her, she understands how her quality of life changes when she does not have as much pain and most definitely when her fatigue is managed.
For me the day brings mixed emotions. I haven’t slept well for a couple of nights. It’s constantly in the back of my mind. I worry about getting the balance right for her. We have to use the chair when needed to minimise fatigue, it will open up the possibilities to enjoy family days out, walks with the dog, for her to have the energy to play in the park because she has not worked too hard to get there. It will open doors for her. At the same time I worry about her strength and stamina, we need to build it, to keep her strong we will not be able to overuse the chair. We have to get the balance right.
I also worry about other people’s reactions to her. Children are honest, but can be unkind. I want to shield her from their negativity. Adults are sometimes worse, her chair is for part time use, she can walk, I know that people will judge her if she gets out to play in the park. I worry about how they will react to her and in turn how I will react to them.
Back to this morning. She is going in to school for first period as she already attends school part time to manage fatigue (it’s part of her new plan) I’m going to collect her and drop her back to school for lunch. As I’m standing waiting with her in the line my eyes start to ‘go’, the all to familiar aura of a migraine washes over me, a product of the stress and in many ways a release from the stabbing ‘ice pick’ headache that has plagued me since Saturday morning. I retreat to a nearby coffee shop for the next hour until my vision returns and I can collect her from school.
She is so excited when I collect her, she has waited a long time for this day. I tell myself to follow her lead and to deal with my worries in private, another time. At home her dad meets us, leaving work for the appointment.Secretly her dad and I both have a funny feeling that the therapist won’t show. We give them 15 minutes and decide to call. We are put through to the therapist that we are expecting on our doorstep.
Her wheelchair has been lost, or the order cancelled, it is unclear at first which has happened. As I listen to the therapist explain in overdrive down the telephone the emotions I am feeling almost render me unable to communicate at all. I can’t believe so many things; that I have chased this chair since the estimated (absolute worst case scenario) delivery time over four weeks ago, that I have asked direct questions of the telephone advisers to be given different stock answers that were obviously untrue, that my calls have not been returned, that they promised me three weeks ago that they had tracked down the chair (it was at this point that they booked today’s appointment), this was a lie, that I have a very excited little girl who is quickly going to be a very disappointed little girl.
The therapist promises to call me by the close of day to update me on what has happened and what the course of action will be now. She sticks to her word. Our order has been deleted by the company that wheelchair services used to deal with in the handover to the new shiny private company that now look after things for our area. I received a letter from them back in October explaining the handover which clearly highlighted that their would be NO disruption to the service that we would receive, telling us how wonderful the change would be for us as clients. Well we are already four weeks over schedule and now we are back to where we started. It’s not the therapists fault, she has given me information to the best of her ability at all stages of the process, she is careful now not to tell me anything that is untrue or make promises that she cannot keep. There are however many people that have not been so honest or bothered to chase up the status of the wheelchair when they have told me that they had. This mistake could have been identified and rectified far before the day of delivery of this chair if the people taking my telephone calls had treated them seriously and hadn’t just tried to tell me what they thought I wanted to hear.
Late December 2015
Do you recall the bubble go pink wheelchair that we were expecting? Now that a new order is to be processed pink is no longer an option. I now have a very excited little girl, probably more excited about getting her wheelchair than Christmas, who has been promised a PINK wheelchair by her therapist only to be now told ‘no.’ I’m not often speechless but I have no words.
I quickly learn that we are not the only family that has been affected, many people with more severe mobility needs will not be getting their chairs, their equipment, their freedom. Many of these people will not have someone to advocate for them, to be their cheerleader. It does put things into perspective a little. We will have to wait a little longer but life, (whilst on hold a little) has not stopped. Her dad can carry her, pull her on her bike so she doesn’t have to walk (or pedal) and we can forfeit days out for a while. At least we have options.
Our therapist calls a couple of days later and has managed to get a pink wheelchair approved again, and will loan another chair until it arrives.
Even later December 2015
It’s our first trip out with the wheelchair (the loan one) and I’m nervous. I don’t know why. I don’t want to see anyone we know, I want desperately for it to be ok. Rubie is super excited. So we drop the boys at the movies, early, when the shops were quiet and head off for a look around.
What a lovely shopping trip! No moaning about tired legs. No constant encouragement to walk a little bit further. No carrying. No oversized running pushchair that won’t fit through a door. We must have tried every perfume in the shop, had a good look around the beauty department and then headed on to the clothes. She had freedom wheeling herself around the store, chatting and laughing, she looked so grown up. She even had the energy to visit a friend on the way home instead of heading straight back to collapse on the sofa. It opened doors. Those tears, that apprehension, the negativity, it all floated away that day.
Today the chair has to go in to school for the first time. It’s Friday and the end of the month, it is also the end of a long week which started on Monday with a grueling Physio assessment and clinic apoointment at GOSH Neuromuscular Unit. The weeks are beginning to take their toll. It’s the children’s Candlemas service in church today which is only a short walk from school but long enough when added to the end of an already long week. After school today is also the children’s disco. Last year at the children’s disco (which was during school hours not after school as she was younger) she didn’t dance, she did to do anything, she sat in the corner with her teacher because her legs were so tired. I want this year to be better, I want her to love it, I want her to have fun with her friends and if that means saving some energy in the morning and missing afternoon play to have a full laying down rest then all well and good.
It’s the first time that any of her friends have seen her in her chair at school. We pull up outside and I can feel the eyes on us. Children and parents. A good friend of mine walks by on the other side of the road, she had clocked the looks too as she makes lovely chit chat with us that puts us both at our ease. I deliver her to the main office for her TA to come and get her, we haven’t agreed this but I can’t face lining up with the wheelchair and all the raised eyebrows. Not today. I’m a bit fingers and thumbs if I’m honest, outside I’m smiling, inside I’m not. My friend has waited for me so that we can walk to church together. I feel a little better in church when Rubie is wheeled in beaming at me and waving. She is such a good girl.
When I collect her from school after the disco she hops into her chair for the walk back to the car. She uses words such as awesome and brilliant to describe the disco and proudly shows off her prize for dancing. It is at this point that I can see her body has well and truly had enough. As she gets in the car she tells me how wobbly she feels. When we get home it is time for very, very gentle handling as she finds it hard to cope, but I take comfort in the fact that she has coped, even if it is just, this time last year things were a very different story.
So it’s been six weeks now since the pink wheelchair went on order so I decide to give a little courtesy call to see what’s going on. I get the standard response from the girl on the other end on the telephone. “It’s out for delivery form our supplier, when we have the chair we will contact you to arrange a date when a therapist can come out to you.” This is reminiscent of the lip service that they gave me for weeks and weeks on the telephone before Christmas so I promise to call back in another weeks time, how long should a chair take to be delivered? It’s not coming from the other side of the world! A week later, as promised, I call. Again the girl proceeds to speak with exactly the same speech… by the time we have finished our conversation head office are going to find out exactly where her chair is and exactly how long it will be until delivery.
We get that call the very next day and an appointment is booked to see the therapist at a local clinic.
Mid February 2016
Well, Rubie is beyond pleased with her new pink wheelchair. That’s what it is all about isn’t it? To make her life easier and to make her a little happier because she doesn’t have to fight all the time. To pace her day.
I have struggled considerably with the weight of the chair so I discuss at length our options with the therapist. We will try the chair for a little while but may look into lighter weight paediatric alternatives and cost them out. There is no point having a chair that is supposed to make Rubies life easier but we can’t use it because I am have dislocated something and I can’t lift it in and out of the car. We are going to explore our options using the NHS voucher scheme. (Which we have only just learnt about after talking to various people.) We aim to visit some suppliers and try out a few chairs and see just how much lighter and easier to handle they are and weigh up the pros and cons for our family and the extra cost.
Watch this space…
So to sum up the whole process…
Lengthy – the process may not be over for us yet as we visit suppliers to look at a lighter alternative for Rubie.
Emotional – sometimes these emotions have crept up on me unawares, like her first fitting and first time at school, it’s hard as a parent to watch one of your babies. It has also been amazing to see things become easier for her. Her wheelchair has meant that she is included rather than excluded from activities at school and at home. One, because she can take part like everyone else and two, because she doesn’t suffer as much with pain and fatigue afterwards.
A Balancing Act – when you have a child with EDS, CMT or both as a parent you are always balancing things. Balancing building stamina and strength with pain and fatigue. Balancing having a normal life with flaring symptoms. Balancing all their different health symptoms with just being a normal child. Fighting for them constantly but never letting it show. The referral process was just another thing on the long list of things to balance and now that we have our wheelchair it still is.