There has been a great deal of discussion over the past week around the consultation on blue badge provision for those with hidden disabilities. This is very topical for us as we are currently appealing the decision to not award a renewal of GG’s blue badge. I resisted the temptation to immediately jump into the discussion and instead opted to track how and why the blue badge is important for GG.
GG does have physical disabilities including low tone, hypermobility, a discrepancy in leg length and some dodgy bone alignments, although she is mobile and can walk short distances. GG does need help to get into the car and be safely strapped in. However the need for a blue badge is driven equally as much by her hidden disabilities – as I hope to explain by giving you an overview of the past week.
Thursday after school: GG arrived home from school and was having a tough day. We immediately needed to jump into the car to collect big sister from her after school club. I carried GG to the car and lifted her into the car seat (all 24kg!) and gave GG her blankie and an apple for comfort. We drove to school to find the blue badge space occupied by a non blue badge user. I parked further away – knowing that getting GG and her younger brother out of the car to go and collect her sister would be even more stressful. Instead I dashed over and asked another Mum to send big sister over to me, which she kindly did. Had I been able to access the blue badge space, I would have been directly outside for big sister and would not have had to leave GG unattended whilst distressed (even for the shortest of times).
Saturday morning: We attended a session for children with special needs at a Children’s Centre. The blue badge spaces are c. 200m from the door to the centre. GG was doing okay so, with support, I helped her out of the car and we walked round. GG had a lovely time but unfortunately hates leaving, she refused point blank to walk back to the car. I left her and younger brother with a member of staff whilst I ran to get GG’s specialist buggy which I loaded her into, and then transferred her to the car. In a normal parking space this would result in a number of issues – not being able to wheel GG’s buggy to the car door so I would have to carry her from the rear of the car, and also not being able to open the door wide enough to lift GG in.
Saturday afternoon: We stopped for lunch at a garden centre. Unfortunately they had no mashed potato which is GG’s staple diet when we are out. This resulted in a lot of distress for GG and despite having walked in quite happily, I had to carry her back to the car. Without the blue badge I would have had to carry her much further and also relied on big sister to make sure her younger brother was safe across the car park. GG was not co-operating so getting her into her car seat was a battle and without the extra space at the sides would have been impossible. Even had GG walked she has very limited safety awareness so my attention has to be 100% on keeping her safe in a car park.
Sunday afternoon: Younger brother had a party at soft play. GG was really tired and so I used the buggy to transport her in and out of the session. She sat playing with the babies, only going up to the big slide with her Dad’s help. There is no blue badge parking at this play centre (I have asked why) but I was fortunate to get an end space, with enough space to pull the buggy up alongside.
Monday evening: Swimming lesson night! GG loves the water but comes out shattered. GG completely refused to put her boots back on (after a battle to shower, get dried and dressed). Once again I carried her, shoeless this time, back to the car and lifted her into her car seat. Being right next to the entrance was much needed as I hauled swim bags x 3 plus 2 tired kids outside, whilst carrying a non-co-operative GG.
Tuesday evening: Big sister’s hockey training night. Again GG did not want to leave the house after school, so she was placated with a bag of crisps and her blankie, and carried to the car. Getting her out again to drop her sister off would have added to her distress, so being able to pull into the blue badge space nearest the pitch meant I could wave big sister off without needing to – a massive bonus.
So as you can see, almost daily – even on a school week, the blue badge really helps to make life a little easier. In the school holidays we would be much less able to get out without it.
There are a a couple of questions I have been asked that I also think are worth addressing.
Are GG’s needs more than those of a toddler? GG is like a young toddler in a (tall) 7 year old’s body. Having had 3 children, I have faced the challenge of not being able to open a car door sufficiently to help a young child into a car seat. However there are always other options – I (like many) have lifted a baby in through the car window. I have helped a toddler clamber through from the front seat and leaned through to the back to secure the seatbelt. With GG, I cannot use these methods and my only option is to put her in the buggy, on a safe pavement and move my car to somewhere we have space. GG doesn’t understand what is happening and thinks I am driving away without her – it is so stressful for her and an absolute last resort.
What if there are not enough blue badge spaces? I have a lot of sympathy with this argument but if for example, there were not enough hospital beds for those needing one would we argue that some people didn’t get one, or would we fight for more spaces? If more spaces are needed then let’s make sure they are provided.
I hope that this has given you an insight into our life and how a blue badge has made a significant positive impact. As you have read, a blue badge is really important when you have a child who has behaviour challenges due to a learning disability, which often results in carrying and lifting to the car. It is important to a child who cannot manage long distances and tires easily, so still needs use of a specialist buggy. It is important to me when I need space to lift an older child into a car seat, because they physically can’t or won’t co-operate with you. Both the physical and hidden disabilities justify the need.
I would welcome your support on the consultation which can be found here: https://www.smartsurvey.co.uk/s/R2OF6/
For the first time today, I used the 5 hours that GG was in holiday club to go out with my other two children (and not for me to work). We were all excited – although tried to not show that in front of GG. It was a 5 precious hours that we chose to spend outdoors, exploring the beautiful local countryside and walking the puppies. It was a glorious day and we had a great time.
In all honesty, I did not miss the screeching, the stressing over whether GG will drink and her refusal to use an unfamiliar toilet. Hauling the buggy in and out of the car and not being able to get in and out of the tea shop were welcome upsides.
I absolutely loved being able to dawdle and explore, GG hates being still in her buggy so stopping is never an option. We visited the Birds of Prey Centre where GG would have struggled with the noise. We enjoyed the simple pleasure of being able to run through the woods with the dogs, and for me being able to watch the others on the climbing frame, without having to join in to help GG around.
GG on the other hand had a lovely day out. Along with some of her school friends, she came home full of smiles, an empty lunchbox and keen to go back again tomorrow.
Perfect you would think so why do I feel so guilty. It is because I missed GG’s smile as much as I missed her screeches. I missed her giggles as much as I missed the inevitable tears. I missed the simple pleasure GG takes in a cheese sandwich whilst my others devoured lunch without a thought.
It felt like we were incomplete as much as it felt a relief to have a fun day without the additional challenges. Every photo I took was missing something. Perhaps in time I will come to accept this new phase in our lives. I know how much we all need some time out, GG’s siblings in particular, but I wish with all my heart that it didn’t have to be like this.
To employers of all shapes and sizes, all sectors and markets, employing a carer can be a fantastic step for your organisation. Your success is based on good people and that is why you should open your eyes to the potential of employing people in the caring community. It can work for you, I am living proof of that, it just requires a different way of looking at how we work.
Let me tell you a little about me. I am mum to three kids, highly ambitious and was never going to step down in my career when I had a family. Baby no. one arrived and after six months I returned to work, no hassle at all. Then baby no. two arrived and my world turned upside down. GG, my Swan (Syndromes without a Name) remains a conundrum to this day, undiagnosed and nearly 7 years old. Suddenly the tried and tested return to work plan became a mountain to climb.
However, I did it and my employer worked through it with me. 7 years in and I remain in a demanding role, I am valued by the organisation and I manage my caring responsibilities. (I will also point out here that I have a husband, he too does his share, so don’t assume that only mum takes the responsibility).
So how did we, my employer and I, make it work? The answer is flexibility on both sides. I will be totally honest about it, childcare with a disabled child is a nightmare but it is not impossible, hospital appointments are a norm, we have daily therapies to fit in at home, we have to spend more time in school settings than with mainstream children and sometimes our children are hospitalised, and we are unavailable for a period of time. This is the time when we need you most.
I accept this means that you cannot give us sole responsibility for a job that needs a high level of presence. It needs you to think differently. In my role, it works well to have a strong deputy, ready to step in as needed – investing in another employee’s development whilst ensuring business continuity, a win-win situation. I have settled into a working pattern of 3 days a week which allows me to flex my days according to appointments and meetings, but ensuring I have chance in my week to deliver my job to a high standard and with cover in place when I am not there. In reality I am almost always there remotely, frequently taking a quick call or managing emails on a non-working day.
I recognise that I am asking for a lot from an employer and whilst I know I am fortunate to be supported, it is my employer who says they are the lucky ones. I have worked my socks off to demonstrate that I am 100% committed and can make this work. My manager describes me as highly productive, I have no time at home or at work to dither, I get the job done efficiently. Being a carer has taught me a whole host of new skills. A situation that would previously have me in a panic, I deal with in a calm and pragmatic way. When you have watched your child have a seizure, nothing work wise will phase me.
My planning, organisation and negotiation skills have been enhanced beyond recognition – negotiating the early years of the special needs system and the NHS is tough and makes us carers resilient and persistent. I have learnt skills I did not ever consider I would need. I can use sign language, I am a physiotherapist, speech therapist, campaigner, advocate for my child – all of these skills I learnt on my own and fast. Nothing my employer throws at me will phase me, I will find a way to make it happen.
The CV of a carer applying for a job may not be typical of the experience you are looking for but please think beyond the ‘job title’ and look at the skills they have to offer.
I am not alone in being a working carer. My organisation is not the only one to successfully employ carers. However we do remain a minority. Every day I hear carers who are desperate to get back to work – will you give them a chance? I hope so.