He goes to sleep to the sound of the waves and breathes in fresh sea air every day.
His school days are full of fun, challenge and fulfilment.
He has a simple life, but a good life.
When I think of my boy, it is this picture that I see in my mind. It is real. Not rose-tinted nor sugar-coated.
Somehow, the spectres that ran through my thoughts when he was tiny have faded beyond sight, or thought.
I am not overcome with despondency as I thought I would be, when I think of the fact he cannot walk or talk. I don’t spend a single second of thought entertaining notions that this life is unfair.
Because I take my lead from him. And he lives life big and large. And happy.
The tearing urgency to find a reason for his disabilities has passed. Instead, we share a little knowing laugh between us when the latest round of routine tests comes back marked ‘normal’.
And I have stopped racing to the postbox to see if any of the envelopes look like they might have come from a geneticist’s office, or from one of the academic studies supposedly sequencing his exome.
Five years ago, if I had tried to imagine a life with this extremity of disability in it, but no answer to the question ‘why?’, it would have felt unfathomable.
I had to protect myself with emotional paralysis and a dogged determination to find a reason. Or the weight of the days and years to come was simply too much.
How could we go on, with the toil and frustration, the physical hard work of caring, the hours spent feeding and changing on too little sleep? How could we continue to advocate for him in the face of societal systems that crush rather than care?
How could we do this without knowing the reason ‘why’?
How could we look him in the eye every day without pressing for answers that might tell us if he could be cured of his epilepsy or more able to communicate, be more independent?
Enveloped in an unceasing need to leave no stone unturned.
But every stone we have turned over is blank. Not a thread of a clue. No pattern, no path to explore. I no longer believe that anything will be found. And I find myself unsurprised to be at ease with that.
Simply the passing of time has sufficed.
Because now we can see that our boy is lucky. That for him, disability and living a great life are not mutually exclusive. He has his health, right now, and steps into each day with gusto.
So we have stopped asking ‘why’. There are others who need an answer to that question far more urgently than we.
Instead we take our lead from him.
His life is a happy one. By measure of laughter alone, he takes a lion’s share of joy in daily life. He has a sophisticated appreciation of the ridiculous. He sees life’s funny side. And is cushioned from life’s darker shadows.
His days are gentle, and funny, and fully of affection.
And I’m pretty sure he doesn’t waste a single second asking ‘why him?’
DISCLAIMER: the opinion expressed in this blog post represents our views only and I appreciate that for many families, the need to find an answer to their child’s disabilities or health condition remains critical.
I continue to advocate for their needs and wants within an NHS system that still has much work to do in developing a holistic view of undiagnosed children. Too often our children are seen ‘symptom first’ with little to no joining of the dots and therefore little hope of diagnosis.
This post was written for Undiagnosed Children’s Day 2019, in recognition of SWAN UK, the charity that connects families who have children with Syndromes Without A Name.
The first Undiagnosed Children’s Day took place in 2013. If you want to take a look at some old posts, most years I have managed to write something…
Since Motherland exploded onto our TV screens last month, the conversation about working parenthood has shifted up a gear. Whether you relate to the character parodies or find them slightly absurd, there isn’t a mother I’ve spoken to who hasn’t recognised a bit of their own lives in the narrative.
As a female growing up in the 80s and 90s, I was always supported to believe that I would have a career. That I could be independent and successful in my chosen path. And, for the most part, I have been. Probably a bit of a ‘Julia’, with a slightly non-descript creative consultancy career and a comfortable home life but with far greater marital equity and less rage than the Motherland character enjoys. (I mean, just where is her husband FGS any why hasn’t she left him yet is all I could think as I binge watched on iPlayer…)
What I hadn’t accounted for though was just how hard it would be, nor how increasingly necessary it would become, to maintain my career once our second child was born with disabilities.
With my first, it was easy. At 8 months, she went off to childcare and we both went to work. A small independent nursery followed by a nanny-share, then a regular pre-school, saw her through her early years contentedly. Childcare was easy to come by, if pricey, and I never doubted my ability to return to work.
With a disabled child, there were no childcare options at all.
As well as the absence of childcare, my calendar was overwhelmed with disability related commitments. Orange had no diagnosis so on top of the twice weekly physiotherapy appointments there were diagnostic appointments, medical reviews and assessments to coordinate.
Unable to return to work as planned, we had to sell our home and move in with my mum while we found our feet again.
In the end, it took me almost three years to build up again to full time work. I have only been able to do this because we moved across the country, have family help and both of us have jobs that mean we can work flexibly with just enough frequency to keep all the plates spinning.
But I am one of an extreme minority.
As Sophie Walker, the leader of the Women’s Equality Party and mother to a child with autism says in her piece today for Working Families, we are ‘a small – and very grateful – minority‘ and yet still ‘perpetually worried that it might all fall apart‘.
According to research from Contact A Family, I am one of only 16% of mothers of disabled children who are in paid work, compared to 61% of mothers with typical children.
Women with disabled children, and let’s face it, it is pretty much always women rather than men, are careering out of the workforce at an alarming rate.
The unavailability of suitable childcare for disabled children.
The lack of school wrap around care and school holiday care for disabled children.
The chaos of medical, health, social care and other appointments that the NHS and local authorities are failing to co-ordinate effectively for children with multiple and complex needs.
Cuts in already too sparse respite care and short breaks for disabled children. And the hilarity of the fact that local authorities will allow families to use these services to ‘have a break’ but we are precluded from using them to enable us to work – to bring in an income, pay the bills and to support our families. So, for many families, the cycle of dependency on the state that they don’t want continues.
Unavailability of appropriate schooling – The BBC revealed last week in their #BBCsend focus that more and more parents of disabled children are being forced into home schooling because the appropriate schooling for their child’s needs just doesn’t exist.
Inflexible employers who do not acknowledge that both men and women have a role to play in child care, particularly when there is a disabled child in the family.
A lack of understanding by employers of carers’ needs and rights in the workplace.
No provision for paid carers’ leave.
Tiredness. Caring for a disabled child often means broken sleep, heavy lifting and managing behaviour. Without adequate support, this can leave parents with very little else left to give.
Ill health. Disability and complex medical needs come with a great deal more time spent in hospital than most.
It’s a complex picture, but certainly the first eight items on the list are surmountable with changes to the law and education, health and social care systems to support us.
It might sound expensive but cost analysis carried out for Working Families by Oliver Wyman showed that even just one small change in employment law – a right to adjustment leave for the parents of disabled children – could result in a potential annual net gain to the economy of up to £500 million.
Working Families wants to hear from parent carers about their experiences of combining work and caring. It will help them to campaign to help more parents to get into or stay in paid work. The more evidence there is, the louder the voice.
If you are a parent carer who works, or who wants to, please fill in their survey by 13 December to have your views included.
I’m often asked if I knew when I was pregnant that Orange would have disabilities. For many reasons that I have written about previously, I’m glad that I didn’t. His disabilities were completely unexpected.
When I started to realise that life might not be straightforward for Orange, I wanted to know why. Why was it that he couldn’t move his head, spluttered when he fed, slept all the time and did this odd stiff banana pose when we picked him up? Why didn’t he seek out my gaze like his older sister had? Why didn’t he smile? And what about that failed newborn hearing test?
When I googled, the answer I got was cerebral palsy.
I spent the first weeks of Orange’s life terrified that he had cerebral palsy and that no-one else had noticed.
Of course, over time, they did.
“I’m not sure about his muscle tone” said the GP at his 8 week newborn check. “Come back in four weeks, won’t you”, he said.
“Has he woken up yet?” said friends, half jovial at the fact my second baby slept so much he was more than making up for the pinned-eye waking torture of my first.
As the months rolled on, and Orange missed milestone after milestone, we were whipped into a system of genetic testing, brain scans and neurological assessments.
Nobody mentioned cerebral palsy. In fact, no-one mentioned any diagnosis at all.
At the time, I held on with hope that if a diagnosis could not be found, that meant Orange was fine after all. He would catch up with his milestones, it was just the stiff neck from birth causing his delays, that’s all.
Orange was almost one before anybody said to me that he would almost certainly have difficulties for life, that we wouldn’t know what they would be until he got bigger, and that we might never know the reasons why.
Until that point, I had no idea that ‘undiagnosed’ was even a possibility for a severely disabled child. And at the time, I also had no idea that there were others in the same nameless boat.
I had so many questions.
Would he walk? Would he talk? Would he need to go to a special school? What about epilepsy, I’ve read that’s a thing for lots of children with disabilities? How will I know if he’s having seizures? How long will he live?
Nobody could or would answer them.
I tried to answer them myself by reading every medical study and report available on the internet about rare genetic syndromes. But all that could be found there was fear. So I stopped.
I asked geneticists and neurologists about specific tests and syndromes. But all that could be found there was the result ‘normal’. Every medical test that Orange has ever had has recorded the result ‘normal’. So I have stopped that too.
There are no answers, except those that Orange is able to give us himself.
He is six now. He hasn’t walked. He hasn’t talked. He does go to a special school. And yes, he has epilepsy. And boy did we know when that started.
Without answers, for a long time we had hope that Orange would catch up. When he didn’t, we learned to replace that hope with a new one. That life could and would be fulfilling and wonderful anyway.
Orange has shown us that what an academic medical journal may have led us to believe would be a difficult and frightening life is anything but. They don’t tell you about the fun. The laughter. The sweet little habits. The kind hands. The bond you have with a child who needs you on a deeper level than most.
They also don’t tell you about the wonderful people you will meet when you have a child with disabilities. Kind and dedicated teachers who see your child’s personality and achievements and celebrate them with you. The respite carer and passenger assistant on school transport who become like extra grandmas.
The families you will meet, sitting alongside you in the boat without a name.
The friendships I have made with other families who also have undiagnosed children are what gets me through when there is no answer to a difficult question. Because while our children may all be different, often we are all floating about in the same unknown territory.
And there are thousands of us.
Every year, 6,000 children are born with an undiagnosed condition. SWAN UK is the only charity in the UK that provides support for families with an undiagnosed child.
It is through SWAN UK that I have made lifelong friendships. Together we celebrate our children, help each other out with ideas for equipment, home adaptions, how to handle meetings with medical and council staff, share frustrations, support each other through grief and loss, look out for each other’s mental health, laugh together, cry together.
But while our group is now at over 1,000 families, we know there are so many more who may need that support.
Today, it’s Undiagnosed Children’s Day, and we are asking people to help us find other families with undiagnosed children who may need support and friendship along this unexpected, but not unusual, path.
So if you know someone who might be in our shoes, put them in touch with SWAN UK.
I don’t know about you, but one of the reasons I’m not at Glastonbury this weekend with all the other mud-coated revellers is because I can’t quite get my head around the festival loo situation. Queuing up in the rain to use a long drop with no toilet paper is enough to put me right off going to Glastonbury, even with the most star-studded of line ups or luxury boutique camping on offer.
But can you imagine if there were no toilets at Glastonbury at all? Or if there were toilets that were only accessible to people over the height of 6ft 5? Or that would collapse if anyone over 10 stone entered the cubicle? There would be uproar among the hundreds of thousands of Glasto fans.
Or, quite simply, people wouldn’t go.
We have become used to toilet facilities being available to us pretty much wherever we go in the UK. Public toilets began being introduced in London in 1851 and since then have become a familiar feature of cities, towns, villages, attractions, public buildings and restaurants across the country.
It would be unthinkable to go for a day out in a public place or to a major event and there not be a toilet available, right? Wouldn’t it?
Unfortunately for some of the most vulnerable people in our society this is not the case. Until the advent of the Changing Places campaign in 2006 there were no toilets available in the whole of the UK for the ¼ million people who cannot use standard or typical accessible/disabled toilets.
According to Changing Places, this includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, severe physical disabilities as well as some older people. A quarter of a million people.
This quarter of a million includes my son, Lawrence, who is five years old and wears a pad because his disabilities mean he does not have adequate control over his own toileting, or the ability to transfer to a toilet, even a ‘disabled’ one. He needs to be changed by a carer, regularly, throughout the day.
When he was tiny, we used the baby changing facilities like every other parent. Luckily, these have been installed in most public places and restaurants across the country because managers have recognised that families with young children are an important and valuable part of their customer base who have money to spend.
Unfortunately the same is not yet true for severely disabled people. A quarter of a million people. And their families.
In the vast majority of public places in the UK, the place where severely disabled people get changed by their carer is the toilet floor of the disabled loo. The filthy, often urine-soaked and dirty, toilet floor. A place that most people would only want the soles of their shoes to touch.
This is the now the reality we face with our little boy. The same reality faced by vulnerable, severely disabled people and their carers across the country. It is not safe. It is not dignified. It is not kind. It is often the reason why severely disabled people and their families are limited to local short trips out only, or why they very rarely leave the house at all. For many carers, lifting a disabled teenager or adult from a wheelchair onto the floor of a toilet and back again would quite simply be impossible, never mind the filth.
What people like our little boy need is a toilet that can be used in safety and comfort for both him and for us as his carers, which has more space than a conventional disabled loo and the right equipment – including an adult sized height adjustable changing bench and a hoist.
Changing Places have made great progress on campaigning for suitable toilet facilities for severely disabled people over the last 10 years, but there are still less than 1,000 across the whole of the UK. In Cornwall, where we live, there are only 10 Changing Places toilets in the whole of the county.
I am delighted to say that this will soon become 11, as a result of a local parent the new (and fabulous) Cornwall Services on the A30 has understood the need for these facilities and is fitting one as I type.
I am, though, sorely disappointed to see that in all the £17.6 million revamp of the Hall for Cornwall, there are currently no plans to install a Changing Places toilet, despite vocal campaigning from parent carer and disability groups.
John Lewis (a favourite retailer of mine until last week) responded to Changing Places a few days ago to say that they ‘didn’t have space’ to fit a Changing Places toilet in one of their flagship stores that has over 70,000 square footage of retail space. Imagine if they said they ‘didn’t have space’ to fit regular toilets, or if they said they didn’t have space for a café, or a shoe department? Unthinkable.
Already, even with Lawrence being quite small, we are finding ourselves planning family days out and long journeys around where there is a Changing Places toilet. We love the Eden Project, because they have a fabulous Changing Places loo, as do the Life Centre and Drakes Circus shopping centre in Plymouth. But beyond that, it’s pretty sparse. What will we do when we can no longer lift him ourselves and when we get sick of carrying around a mat soaked in urine from the toilet floor?
We will be isolated.
You see, it’s not just the person with disabilities who suffers when there is no toilet they can use. The lack of Changing Places facilities isolates entire families too. Families who have money to spend at your restaurant, shop, theme park, hotel or festival, just like everybody else.
So please, if you are a restaurant owner, a hotel, shopping centre or theme park manager, or a local authority public convenience planning officer (do they even exist?) then please, please fit a Changing Places toilet. Not only will you see the investment repay itself with new loyal customers but you will be changing lives.
Oh, and by the way? If you’re heading to Glastonbury this weekend and one of your party is severely disabled, you’ll be thrilled to hear that the festival has a Changing Places toilet in the Spring Ground Accessible Campsite. For everyone else, if you’re not keen on the long drops, you might want to check out the compost loos… Good luck 😉
When Orange was not quite two, I remember counting in my head the number of doctors, nurses, specialist consultants, therapists and support workers that had been involved in our lives as a result of his difficulties since he was born. I was astounded when I got to 46 and was sure that I wasn’t done counting.
Since then, Team Orange has grown considerably. I stopped counting some years ago but in his five years I can be sure that well over 100 and probably over 200 health and social care professionals have been involved in Orange’s care to date. And that doesn’t include the hundreds of administrators and officials who we speak to day in day out to coordinate appointments, medication reviews and prescriptions, equipment deliveries and repairs, blue badges, disability benefits and education, health and care plans.
That’s an awful lot of people to welcome into your lives. An awful lot of people to open up to, to place your trust in and to rely on to do what’s needed for your child. An awful lot of people who need to work together, in a coordinated fashion, to deliver the right support and care for your child and for you, when you have no idea what you are doing and are learning as you go.
If I have learnt anything in raising a child who has severe disabilities and complex medical issues but with no diagnosis for his condition, it is that I cannot do this alone. It is too big a job.
While I know that I am the world expert on my boy, I am not the world expert on epilepsy, hypotonia, dysphagia, arachnoid cysts or scoliosis. I also need to sleep, work, take care of Orange’s sister, be a wife, sister, daughter and all the other ‘normal life things’ that can get swept aside when you are a parent carer. I can only do ‘normal life things’ if we have help.
As much as there are (many) times when I just want to snuggle down with Orange and hide away from the perpetual merry-go-round of appointments, medical examinations, reports, meetings, phone calls, letters and assessments, I know that I would be doing Orange and all of us a dis-service if I didn’t build a solid team around us of people and professionals who can help. And lead this team to deliver what Orange needs to be safe, happy, well and fulfilled in his life.
When you have a child who has complex needs but no diagnosis there is no well-trodden pathway, no yellow brick road to follow.
No-one will show you the way.
Here are some things I wish I had known, that would have given me confidence, in the early days of us discovering Orange had a syndrome without a name.
You will have to cut your own path, often in a forthright and determined fashion, even when you are at your most worn out and frightened. You will have to do this to access simple things like the right schooling, essential medical support, suitable childcare so you can work, or fit-for-purpose home adaptations for basic daily care like having a bath, or essential tasks like leaving the house. You will do it, because you are strong and because no-one else will.
Lots of people will enter your lives that you didn’t expect. Some invited and some uninvited. Sometimes this is exactly what you need. Sometimes it will drive you nuts. Often at the same time. Roll with it but know that you can press pause if you need to. You are in control.
You will learn to trust people. You will also learn when not to. Your gut instinct is always right. Use it. Lean on the people who you trust and ask for a change of professional in circumstances where you feel there is a lack of trust or understanding. You will know when you need to do this.
You will learn to ask for help (sometimes unceremoniously). This is something I wish I had learned sooner. It took me four and a half years to actually open up to a professional who could help us get the respite care we needed to keep our family on an even keel. It wasn’t pretty. Something akin to hanging a dirty nappy on the door, which one of my favourite SWAN bloggers made famous with her post on Complicated Gorgeousness about the lengths some parents have to go to in search of respite care. It shouldn’t be like this but often it is. Ask for help. Loud and clear. And do it now, don’t wait until you are at crisis point.
You will see the best in humankind and it will make your heart swell. And sometimes you will see the worst and it will make you want to sink into the ground. But most of the time you will just see people, normal people. Some who can answer your questions, some who can’t, and plenty who want to ask fountains of questions of you. Consultants, educational psychologists, social workers, parents of disabled children – these are all groups of people I had preconceived ideas about. And in the most part, I was wrong. We are all just people, for the most part trying to do our best in life and be fulfilled and happy. Remember that always.
You will find people just like you. You are not alone. There are thousands of families with children posing similar quandaries to professionals all over the world, who have complex conditions and no diagnosis, despite years of testing and the best, cleverest minds in genetic research on the job.
These people will hold you together when your child stops breathing and you are in an ambulance racing to hospital with a child in status epilepticus, not knowing if he will pull through.
These people will help you when you have to fill in 40 pages of disability living allowance forms that are not written with complicated, undiagnosed conditions in mind and you have no idea where to begin.
These people will celebrate with you when your child takes a small step that for them is a gigantic leap. Putting a spoon in their mouth for the first time, turning the page of a book, smiling in response to your smile, or squeezing your hand with affection.
These people will laugh with you, cry with you, rant with you, stand and campaign with you at Westminster, share your ups and downs, solve problems with you, hold your hand and drink wine with you.
These people are everybody who makes up the community that is SWAN UK, the small but growing charity that supports families who have children with undiagnosed syndromes.
Through SWAN UK we have found our people. Without them we would be lost.
Friday 29th April is Undiagnosed Children’s Day. On this day, we celebrate the support and love of SWAN UK, raise awareness of undiagnosed genetic conditions, and reach out to other families who may be feeling lost, or alone and unsure where to turn to for help.
Every year, as many as 6,000 children are born who have undiagnosed genetic conditions. They, and their families need your help. SWAN UK cannot keep going and keep delivering the support that it does without funds. This is why Mr K ran the London Marathon last weekend for SWAN UK, raising over £3,000 for the charity. You can still sponsor him here. Thank you.
I would also like to say thank you to all the professionals who are part of Team Orange, who help us negotiate this untrodden path. There are too many to name, but a special thank you goes to Orange’s school team, his school transport escort, his disabled children’s social worker and his school nurse, who provides our respite care. Thank you. We absolutely could not do this without you.
To end, here’s a little video with some great tips for professionals on how you can help families who have an undiagnosed child, and some lovely stories of professionals who are worth their weight in gold, who have gone above and beyond to help families with undiagnosed children.