Trailblazing

So, I realise I bang on about inclusion rather a lot. That makes me both a zealot, and a hypocrite, because my son attends a specialist provision rather than the local primary school that his sisters go to.

There are several reasons Benjamin still attends the wonderful, well-equipped, superbly-staffed specialist provision at which he started before I knew any better. It’s partly because he doesn’t cope too well with change and for that reason I don’t want to move him until he has to transition to secondary school anyway (at which point I fully intend him to go to his local mainstream school, if he likes it). It’s partly because I am both gutless and proud, and don’t want people to see me change my mind and start asking for the opposite of what I fought for three years ago. And it’s partly because children with additional support needs in the UK (even in Scotland) are, at present, caught between a rock and a hard place.

Even in Scotland, where the “presumption of mainstream” is enshrined in law, the fact is that the majority of the funding and support available for these children is concentrated in special schools, and it’s not easy to shift it. It takes a battle against the prevailing orthodoxy for our children to receive the support they need to flourish in a mainstream setting, so parents feel they have to choose between meeting their children’s academic, healthcare, and sometimes safeguarding needs, and allowing them the opportunity to make lasting relationships with their peers in their local community.

This last is why, I think, every time I post about full inclusion, I get comments along the lines of “I honestly do think inclusion is a good thing … BUT … not for my child.” “There simply isn’t a ‘one-size-fits-all.’” “Some people’s needs are best met outside the mainstream.” And so on. It’s why specialist settings are so often over-subscribed; why parents have to “fight” to get it inscribed in their EHCP or IEP or CSP that only a specialist provision will do, lest they fall between the cracks and end up, stranded, in mainstream.

The fact is, making change is tough. Change doesn’t happen overnight. Change is messy and piecemeal. I hesitate to sound all Brexity here, but it may get worse before it gets better. If we’re going to break the cycle of segregation – if we’re going to nurture a generation of children who accept one another whatever their protected characteristics – we are going to have to put our kids on the frontline during that change, and why should we? Why should my precious boy risk being poorly-supported in a mainstream setting while the bulk of the support he needs is channelled into specialist provisions? Why should he wait for the OTs and physio to squeeze out time in their busy schedules to see him, when they can more efficiently support all the children that are on a single site at the other end of the authority? Why should his ability to communicate be limited by the equipment that can be spared from that “one stop shop” of an institution?

If it comes to that, why should I go grovelling to swimming pools and shopping centres, begging for fully-accessible toilets, when I can still lift my child (just) onto a baby-changing table without it (or me) collapsing? Why should I swallow my anxiety pills and call out the person half-dozen people parked in a disabled bay without a blue badge, when I am not even using my car that day? Why should I face the wrath of the do-gooders every time I point out how discriminating and stigmatising “autism hours” and “purple Tuesday” are?

If it comes to that, why should I give up bacon sandwiches while others in our community still see a steak as the best way to start the weekend? Why should my children do without exotic holidays when their grandparents continue to fly around the globe at every opportunity? Why should we spend our savings insulating our house when the shops on the High Street still have their heating on and their doors open in midwinter? Why should I keep trying to source cloth nappies to fit a six-year-old when most parents of babies are content to just keep on covering the planet in pooey plastic waste? What would be big lifestyle changes for us will make no difference on a global scale when presidents and prime ministers wage war over oil-fields and let their forests burn.

Why?

Because, to misquote, “If not now, when?” and “If not me, who?”

Because the correct question to ask is not, “Why me?” but “Why not me?”

Because somebody has to make the first move.

When I enrolled on the Partners in Policymaking course last year (applications are open for this years’ intake; get yours in now!) I hoped it would teach me how to make a difference in the world. What it taught me was that changing the world has to start with changing our own attitudes. It’s not enough to talk about how things should be, no matter how persuasive I am; I need to lead by example. Whether people follow or not.

At work, I am playing a small part in a process aiming to improve gender equality in UK higher education and research institutions. It’s called Athena SWAN (Scientific Women’s Academic Network; I don’t know where the Athena bit comes from). I find their structure helpful here: to get a Bronze award in the Athena SWAN charter, our institution must be able to recognise areas in which we could make improvements towards gender equality. To get a Silver award, we must evidence actions that have had impact to improve gender equality. But to get Gold, we must do all of that and we must be “beacons … [who] champion and promote good practice in the wider community.”

I don’t want to be a beacon – I’m not a strong personality, I don’t relish the limelight, and I’m not good at public speaking; I’m scared. I don’t want to make a fuss and I don’t want to put my family in the line of fire. Plus I get hot and flustered when put on the spot. But, I care about the world my children are growing up in right now and the one they will have to survive in the future. So better hot, flustered, and making a difference, than cool, calm and collected, until it’s too late.

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Ignorance is bliss?

On the day that our lives were turned upside-down by an emergency 38-week scan, I remember begging the neurologist to put us in touch with other families with children like our as-yet unborn child.

Some part of me knew – despite the medical predictions (“Your baby will never walk, or talk. He won’t be able to feed. He won’t survive the birth”) – that this wasn’t the whole story. I wanted a glimpse into the future. I needed to know, not just the worst case scenario, but the lived experience.

[Image by Peter H from Pixabay]

For whatever reason – perhaps because we were so very short of time to make our decision; perhaps because there were so few other families with children like ours in our area; perhaps because our wise consultant didn’t think it fair for us to invade their already complicated lives – for whatever reason, we never met with those other families. For whatever reason, we made the decision to go ahead with the pregnancy despite advice to the contrary. For whatever reason, Benjamin came into our lives.

Thanks to the amazing charity SWAN UK, I now do know several families with children similar to Benjamin. I know that their lives are just as complex and, at times, difficult, as ours. I also know that not one of them would have it any other way. Yes, we wish our children didn’t have to suffer. Yes, we wish society were more inclusive, accessible and equal. Yes, we wish our children’s siblings had a more ‘normal’ home life. But we never, for one moment, wish that they had not been born. Even the folks who, after that unpromising scan advised us to take the termination option, now acknowledge that all our lives are better with Benjamin in them.

The same is true of other disabilities and differences. You only have to watch this “carpool karaoke” video from last year to see how much joy, life, meaning, and promise children with Down Syndrome bring to their families – as much, if not more, than any neurotypical child.

And yet…

And yet at least nine out of ten women faced with a prognosis like ours would choose an abortion. Ninety-one percent of mothers in the UK who receive a pre-natal diagnosis of Down Syndrome terminate their pregnancy. According to the European Surveillance of Congenital Abnormalities, between 2006 and 2010 in England and Wales 157 foetuses were aborted for cleft lip and palate and 205 for club foot. More than 90 previously much-wanted pregnancies terminated each and every year for conditions arguably much less severe than Benjamin’s.

Why the disparity? Why, despite all the evidence that children with disabilities are better off alive than dead, are so many of them killed in the womb? Why do parents, after much heart-searching, honestly believe that this is the best thing to do, for their baby, for their family, and for themselves? Why do they, in alarming numbers, reach such an apparently contradictory conclusion?

One answer could be that they don’t have all the information on which to make such a decision. That, as we were, they are given the stark medical ‘risks’ but no inkling of the beautiful chances. They assume they have been fully informed, and they don’t ask for more. And who can blame them? Suddenly finding that the child you are carrying has a disability is, for most parents, completely outside their experience or previous encounters. It’s not something covered in NCT classes. So they trust the medical professionals by whom they are surrounded at that critical time. They don’t press the doctors for the other side to the story, because they have no concept that one exists. The medical story appears to be the whole story. This puts a huge amount of power and responsibility upon (already overstretched) medical professionals.

What if the responsibility wasn’t all theirs? What if they could do their job, of giving us the medical information, safe in the knowledge that everyone already has some idea of what it is like to be disabled, to bring up a disabled child, to have a disabled sibling? What if people weren’t afraid of disability because they see it in their everyday life: at school, at work, at church, on TV, in the supermarket, on the bus, …? What if we hadn’t had to beg our consultant to put us in touch with another family like ours because they were already all around us?

He ain’t heavy… he’s my brother

What if all disabled people went to mainstream schools, were supported to live in their own communities, could access their playgrounds, shops, restaurants, cinemas, zoos, theme parks, leisure centres, trains and planes? What if everywhere met the requirements of the Equality Act to make reasonable adjustments?

What if, instead of special schools, special “autism friendly hours,” and “purple Tuesday” shopping days (one day a year when disabled people are invited to go shopping… on a Tuesday, outwith the lucrative sales and Christmas shopping periods, of course!), disabled people could learn, shop, work, travel, and play with everyone else? What if people who need support to leave their house, get support to leave their house, rather than being docked financial support because they can’t leave their house to get to an assessment? What if people with “challenging” behaviour (i.e., unmet communication needs) were able to live with their families and peers instead of being locked away for years, in units hundreds of miles from home?

Then, we might all be better informed. We might all have the lived experience necessary to see the full picture. We might see that disability is not scary. Disability is not wrong. Disability is not a tragedy. Disability is not to be locked away. Disability is not to be culled from the population. Neither is disability an “inspiration.” Disability is simply an ordinary part of the rich tapestry of human life. Then, we might realise that ignorance is not bliss. Ignorance is missing out on the wealth of gifts, skills and talents that is hidden in the diversity of our population; which rarely see the light of day.

Benjamin loves to swim. He loves to visit the park. He loves to go to school – and he is making great leaps in his ability to communicate. He is a joy to be around and if he could go to school, go to the park, swim, and so on, with his peers, a generation would be better informed and a generation would grow up for whom termination is not the obvious or only answer to what is seen as purely a medical problem. A generation in which everyone is a citizen with common human needs and a contribution to make, whether they need a little help or a lot.

I know that inclusion, mainly for historical reasons, isn’t easy to achieve. But it’s currently getting worse: we live in an increasingly hostile climate in which government policies, procedures, and propaganda, and the public attitudes they foster, threaten to force disabled people back from the society they have pushed so hard to enter, into nursing homes, segregated schools, or as prisoners in their own homes, just as at the same time medical advances such as NIPT make it easier and “safer” to identify and “deal with” disability in the womb. These combined pressures could see minorities such as the Down Syndrome community effectively eliminated in our lifetime.

We have a collective responsibility to turn this around. Our government needs to overhaul the benefit system and its mind-set so that it is no longer in contravention of Article 19 of the Convention on the Rights of People with Disabilities. Our local councils, businesses and attractions need to make Changing Places and accessible design a matter of course. As citizens, we need to lobby for better allocation of funding to children with ASN in mainstream education, for our rights to accessible public transport, and so on. As medical professionals we need to modify our language from “I’m sorry,” “There’s something wrong with your baby,” “Not able to live a ‘normal’ life….” To “Congratulations!” “Your baby may need more support than others,” “We can help you to live an ordinary life.” As parents, we need to foster our children’s naturally inclusive nature, not nurture a sense of disgust at anything different. As parents of disabled children, and as disabled self-advocates, we need to put ourselves out there as beacons of human rights. Because ignorance of disability is not bliss. Ignorance of disability is deadly.

Knowing better

When I was ten years old, I had a best friend. Her name was Helen. She lived ten minutes up the road on a smallholding with ponies (!) and had her own (rickety, damp-smelling) caravan, where we used to spend our afternoons hiding from our little brothers, singing Jason & Kylie songs, trying on lipstick and eating Cadbury’s Crunchies. When we were eleven, on the basis of a ‘verbal reasoning test,’ we were sent to different schools: she to the comprehensive, while I went to the girls’ grammar. I didn’t understand what was happening, but I remember crying and begging my teacher to fix it so that we could stay together. It was for the best, she said. That was the system. There was nothing she could do. I didn’t realise at the time, but it was my first taste of segregation. I didn’t know any better.

I never played with Helen again. I had a good education, a privileged education. An education my parents wanted, worked hard for, planned, and bought a house in the right place for. But it was a segregated education, and not entirely a happy one. At my school there were no boys, few ethnic minorities, and I remember no one with a disability. In a world of uniformity, I was picked on as the odd one, and I thought it was my fault. I didn’t realise it was the system that was at fault – how could I? I didn’t know any better.

When I was 38 weeks pregnant with my second child, I was advised to abort him on the grounds of his likely disabilities, his hypothetical quality of life, and his potential impact upon the lives of those around him. I almost followed that advice – I didn’t know any better. Many more parents do follow that advice, because exclusion and segregation don’t start with the ‘eleven plus;’ they start at 24 weeks of pregnancy. This is the point at which disabled children are denied the automatic right to life that is granted to non-disabled children. Right across the country, at their twenty-week scans, mothers bearing children with something as innocuous as Down Syndrome are told, “I’m sorry,” when they should be hearing “Congratulations.” They rarely challenge it. They don’t know any better.

But – oh my goodness! – the impact Benjamin has had upon the lives of those around him! The opportunities he has brought us; the things he has shown us; the friends we have made; the gifts we have uncovered in him and in ourselves.

Even so, until a few months ago I assumed that Benjamin was destined for a life in special schools – I even fought to get transport so that he could travel twenty miles away from home to a special school. It’s a good school, with fantastic staff, top-notch equipment, and excellent support. It’s the school best able to meet his needs. However, Benjamin spends the vast majority of his time in a class of seven disabled children. He has minimal interaction with his non-disabled peers and they have little knowledge of him. Because his school is a twenty-mile taxi ride away from home, he has no chance to become known in his local community, to make local friends, to walk to school with his siblings, to have a school photograph taken with them. And I mourn these things.

I assumed that Benjamin would spend his afternoons and evenings at home with me and, when he is finally spat out of school by the system, into a community that barely knows him, would move to a life in day care centres, if he lived that long. I assumed that he would wear the clothes other people put on him, watch the TV shows other people switched on, maybe play boccia with other disabled people. He would have little to contribute. I didn’t know any better.

Now, thanks to a course called ‘Partners in Policymaking,’ I realise that Benji could – and should – be supported to go to his local school with his sisters; where once I begged for special provision for my “special needs” son, now I crave an ordinary life for him. He will go to Beavers when he’s six (they’ve already agreed to take him), take part in our town gala and the church summer holiday club, swim with his friends, go out in the evening. He should choose his own clothes and toys, and have a turn in charge of the TV remote. He can be happy, have friends, and play a meaningful part in his community.

“Inclusion doesn’t meaning getting wet though, does it?”

Partners in Policymaking brings together disabled self-advocates and the parents of young disabled children to work towards a more inclusive society. To be honest, I hadn’t realised that our society was not inclusive already. I certainly hadn’t realised that the life I had envisaged for Benjamin was not inclusive. But the becoming-ever-so-slowly-more-equal rights so hard fought for by women, ethnic minorities, and the LGBT+ community do not yet extend to disabled people. Exclusion, segregation and deliberate discrimination are rife in the UK today. And I had been a part of it. I didn’t know any better.

Segregation is at its worst in the Assessment and Treatment Units that are no improvement upon the ‘institutions’ of the past. But even well-meaning initiatives – ‘Purple Tuesdays,’ ‘Autism Hours,’ special waiting rooms at railway stations – unwittingly perpetuate the segregation which maintains an ignorance of the fact that disabled people are just people, with gifts and capacities, needs and wants, just like everyone else. No wonder many of the abled consider the disabled to be a drain on society, if that’s all we let them be. Why should hard-working businesses spend money building Changing Places toilets – can’t disabled people just shop on the internet? Disabled people don’t go the pub or the cinema, do they? Well, surprise surprise, if you build them, we will come.

The good thing is, inclusion doesn’t need to cost any more than segregation. If all the funding that were spent on specialist schools and units, on transport across – or out of – local authority, and on all the excellent teachers and support staff in special schools, were transferred to mainstream settings, everyone could be supported to reach their full potential. If the huge cost of keeping children and adults locked up in ATUs were diverted into providing support and building relationships in their community, we would see clearly that there was no need for these institutions in the first place.

The great thing is, including disabled people in ordinary, everyday life doesn’t make things worse for the rest of us! Why would it? It doesn’t make things worse when ethnic minorities, women, and gay folk are included. It makes life richer. It makes our environment more accessible to all. It makes our children more accepting, and kinder. For instance, if we can meet Benjamin’s needs in terms of access to our local swimming pool, we undoubtedly make that pool more welcoming for families with young children, and many others. And when Benjamin can access the pool, everyone gets to see the joyous smile on his face as he relaxes in the water. In sharing the water with Benjamin, his peers start to experience disability as normal and not something to be feared. When disabled people are included, they become visible; when they become visible, we see that they are just people. When we see that we are all equally flawed and equally gifted, there is no reason to exclude anyone. The late Jean Vanier put it much better than I can: “When we love and respect people, revealing to them their value, they can begin to come out from behind the walls that protect them.” We start a cycle of inclusion: after just one generation, everyone could know better.

A drain on society?

The lovely thing is, inclusion doesn’t have to mean more fighting. Inclusion really isn’t all about ramps and doorways, toilets and hoists, infrastructure, equipment, personal assistants, … and money. Inclusion can start at home and in the community. It starts by making people feel welcome, building connections with those who are different to ourselves, recognising everyone’s gifts and capacities, nurturing relationships, and solving problems together.

I don’t feel guilty about how I’ve behaved in the past because, being brought up in a segregated society, I didn’t know any better. I don’t blame the professionals, who are taught to focus on differences, problems, and deficits; who don’t have the time, training, or freedom to consider people’s potential, to realise people’s dreams. They don’t know any better. But the United Nations knows better (the UK is one of only two countries to have placed restrictions on the implementation of Article 24 of the UN Convention on the Rights of Persons with Disabilities, which covers inclusive education). Disabled people like Benjamin know better. My daughters will know better. Everyone needs to know better. So I don’t feel guilty, but I do now have a responsibility to act.

I feel like I’ve aged several years during the eight months of the Partners in Policymaking course. Partly through lack of sleep, intake of gin, and travelling. But mostly I feel like I’ve grown up, from an angry child to a constructive, collaborative adult. Maybe. I’m a work in progress – aren’t we all? The wonderful thing is that changing the world no longer seems to require power, position, or politics. By changing our lives, and the lives of those around us, we can break that generational cycle. Step by step we can create an inclusive world.

Don’t fight it

If there’s one thing I’m learning from being a parent, from being a special needs parent, from being a member of SWAN, from doing the Partners in Policymaking course … in fact from all the paths that life has sent me down since becoming a mother, it’s that sometimes you’ve just got to stop fighting and roll with it.

Since January I have been trying – and mostly failing – to get to a Monday morning 6am pilates class that I signed up for. And beating myself up each week for hitting the snooze button instead of jumping out of bed and out into the darkness. By the end of the term I have finally accepted that I am just never going to be one of those people who can get up an hour earlier than the rest of the household and kick-start their day productively. I’m always going to function better late at night than early in the morning. So I’ve decided to stop fighting it, and signed up for a much more manageable 10am Wednesday class instead.

Star of the week for super-switching!

Since forever, we have been trying to teach Benjamin to communicate with a simple switch. A big, colourful button that he can push to activate a toy, or sound a noise – anything that means he plays an active part in what’s going on around him. The problem is he can’t really raise or lower his hands in a controlled way (yet), and he also cannot see his own hands so has little awareness of what they are doing. He is, however, now pretty awesome at moving his head from side to side. So his OT had the idea of moving the switch up to beside his head (Why didn’t we think of that before?). Working with what Benjamin can do, rather than frustrating everyone pushing on with something he can’t, means he is now making leaps and bounds in switching and will be able to work towards more complex switch-based communication.

For the first few months (years?) after Benjamin was born I couldn’t believe there was no obvious explanation for his needs. I spent hours googling combinations of symptoms, following up references, emailing the names of potential genetic mutations to his geneticist. I didn’t want to be the only parent who couldn’t answer the question “What condition does your child have?” with a simple phrase or a tick in a box. Now, of course, I know we are not the only ones, not by a long chalk! In fact, 6000 children are born each year in the UK with a Syndrome Without A Name. Now that we are members of SWAN UK – the charity that supports families of children with undiagnosed conditions – it matters less whether we ever find an answer or not, because we are surrounded by people who “get it” anyway.

Of course, there are still battles to be won and changes to be fought for. Having a disabled child is hard. Having a disabled child in the UK in the age of austerity means every ounce of support has to be contested. Having an undiagnosed child makes it harder to access the benefits system, harder to make sure Benjamin receives appropriate medical treatment, harder to get the support he needs to attend school safely, harder to arrange travel insurance, harder to access childcare and therefore to work, and so on … But all these battles are made easier because we have a tribe now. We have access to a UK-wide network of other parents who have been there before us, who have the answers to some of our questions, who can tell us which battles are worth fighting and which are just a waste of precious energy, who can provide a voice of reason in the middle of the night, and a much-needed boost when the struggles seem never-ending.

In the beginning, I wasn’t sure whether I needed a support group. I railed against the idea of sharing my child’s medical details with an online community of people I had never met. I would fight my own battles; I didn’t need any help. Now I realise that it’s not all about the fighting. It’s about sharing the highs and the lows, having a laugh, making friends, sharing a love story. Like a pride of lions, SWAN parents work together, look after each other, and allow each other time to rest. We’ve got each other’s backs. We’re #ROARsome. This Undiagnosed Children’s Day (Friday 26^th April 2019), I’m proud to have a SWAN, happy to roll with his needs, and grateful to be surrounded by lions.

We found love … So don’t fight it … Life is a rollercoaster … Just gotta ride it (Ronan Keating, Life is a Roller Coaster)

My own little pride of #ROARsome SWAN lions

#UCD2019 #ROARsome

You can join SWAN UK at https://www.undiagnosed.org.uk/join/ and support them at https://www.undiagnosed.org.uk/donate/. Please share this to help us to reach the thousands of families with undiagnosed children who haven’t yet heard of SWAN UK.

Too many futures

Why are the parents of disabled children always so tired? There are all the obvious reasons of course: so little sleep, so much paperwork; too many hospital stays, too much wine, cake, and coffee… but there’s one reason that I haven’t seen discussed so often: we spend so much time thinking about the future.

How often do you think about the future? About the trajectory life is likely to take? Do you feel prepared? Perhaps you have plans to travel the world, take up a hobby, or give something back by volunteering? Maybe you worry about how things will turn out, or maybe you live in the moment. We’re all aware that life often doesn’t turn out as we expect. That even the best laid plans don’t prepare us for what lies ahead. That’s why we make preparations that cover a wide range of scenarios: we put aside savings, start a pension, make a will, take photos, get vaccinated, … Preparing for the future is tiring. Worrying about the future is tiring. But hopefully once we’ve prepared a little, we can stop worrying quite so much, and get on with enjoying life in the moment.

But what if there are several likely scenarios that all require very different preparations? Physically, emotionally, financially, …? Preparing for, and worrying about, multiple, wildly differing futures is exhausting. That’s what many parents like us have to do. We have to think about too many futures.

There’s the one where you continue caring for your child as they grow up and grow old. In this future, you have to prepare your child and yourself for a long term stay in the big, wide world. You have to make sure your child gets all the therapy, does all the exercises, no matter how unpleasant, that will set their body and mind up for the healthiest adulthood. You have to consider the surgeries that may benefit them longer term, no matter how risky and painful in the present. You may have to prioritise postural maintenance over cosy cuddles, practice and practice and practice over rest and relaxation.

You have to plan and prepare for transitions, for secondary school, for adult services, for PIP assessments. You have to ensure your house is adapted to meet your child’s needs as they get larger and heavier. You likely have to find funding for a proportion of these adaptations, particularly if you want them to be suitable for the rest of your family as well. You may try to see as much of the world as you can while your child is little, while you can manage without a hoist and a changing bed, before the world starts closing in around us.

You have to prepare yourself financially, for the fact that you may never again be able to work full-time ,or at all. You have to look after your own physical and mental health, for the long term. You try to make time to stay physically fit and strong. You may need to seek out, and fight for, respite options before you want or need them, because you know you’ll will need them, and accessing support can take years, if you qualify at all.

You start battles for the things you know your child and others like them will need in the future – accessible buildings, changing places toilets, better public transport, parking spaces. You fight the ever harder battles against cuts, austerity, stigma, ignorance, and hate.

You worry about having to care for both your parents and your child. You worry for your child’s siblings, whether they will be forced to compromise their own future plans. You fear for the future of your relationship with your partner. You fear becoming more and more isolated within your community. Yet you hope that this future comes true.

Then, there’s the one where you lose your child too soon. You try not to think about this, but sometimes it pops into your head and catches you unawares. And you know you have to prepare for this scenario too: you have to focus on making memories fast. On going places, taking photos, snatching cuddles. On making more of an effort to see friends and family. You skip respite sessions because you don’t dare lose a minute together. You struggle on without the adaptations you need because later they will just be painful reminders. You neglect your own health – there’ll be plenty of time for that later.

But at the same time you have to prepare for life after. You keep your career going because you’ll need it. You try to subtly prepare your child’s siblings for the loss, as if anyone could ever be prepared. You wonder how you yourself will cope with the loss, with the lack of purpose, when your whole life has centred around being a carer. You think about end-of-life care. You make a list of all the things that will need to be done – notify the DWP, hand back the Motability car, cancel the endless deliveries of syringes and feeds, … You plan funerals in your head. You probably think about funerals too much.

Scariest of all, there’s the one where your child outlives you. I think many of us bury our heads in the sand when it comes to this one. The future is just too grim, the outlook too bleak. There are too many horror-stories and not enough examples of best practice. But, prepare for it you must. Your child’s siblings mustn’t feel obliged to take on a parents’ role caring for him; can you make sure everything is in place so they don’t have to?

There are the complicated financial and legal preparations: wills, trust funds, guardianship, and power of attorney. There are practical arrangements. Everything must be documented: care plans, therapy schedules, medications, likes and dislikes, the intricacies of communication and how your child shows discomfort, pain, and distress. You can write care plans and make digital passports but what if you forget something? How to give NP-suction through his twisted airway … how he says hello … how to tell if he’s tired … how to pass on the things we know only by instinct and intuition that can’t be written or said …?

Without you, who will make sure your child is not only fed and clothed and medicated, but happy, loved, and befriended? Who will make sure he has contact with his friends, remains known in his community? You need to do as much as you can now to build relationships, to help him make friends with his neurotypical peers, to make sure he’s widely known in the community so that there are as many folks as possible looking out for him.

And, you have to prepare for all these futures now, at the same time, together, because failing to prepare for any of them is just too risky. Or at least you should prepare for them, and if you don’t feel adequately prepared you worry and stress all the more. You may even fear them. What if you fear all of them? What if you feel guilty for hoping one of them comes true?

But there is a fourth future, one I until recently had no concept of (thanks, Partners in Policymaking). One where your child grows and thrives, makes friends, and is known, loved, and valued in your community. Where it’s no longer all on you. Where your child teaches you and all those around him; where your community becomes a better place because of what he teaches. Where his siblings become not duty-bound carers but gentle warriors. Where people you hardly know surprise you by independently making changes towards inclusion and accessibility. Where your son brings people into your lives that you would otherwise never have met but who become your best friends and your closest allies. Where you learn new skills, make new priorities, and realise potential you never knew you had. There are still preparations to be made, of course, but this is a future filled with dreams not fears. Where, whether your own child lives or dies, together we build a better world for everyone.

Daring to dream

For the past couple of weeks, Benjamin has been in the habit of waking in the early hours of the morning, hot, agitated, dystonic, twitchy. I’ve tried everything I can think of to relieve his discomfort: chest physio, pain relief, muscle relaxants, suctioning, repositioning. I’ve checked his heart rate, breathing rate, oxygen saturations and temperature. I’ve changed his pad, cuddled him and stroked his hair, massaged his tummy and exercised his legs, we’ve listened to music and we’ve lain and watched his starlight projector together. I’ve had to be nurse, doctor, and therapist: diagnosing what’s wrong, making the right clinical decisions, and guessing what will work. Each time he falls back to sleep hours later, leaving me none the wiser.

I wrote once, towards the start of this journey, that whilst I knew my child would be disabled, I didn’t realise they would be sick. That seems so naïve now, for in many ways sickness has taken over our lives. Benjamin is on a dozen regular medications; he needs twice daily chest physio and antibiotic nebulisers; he’s fed a complex cocktail of chemical nutrients through a tube; his temperature and heart rate need regular monitoring; and managing his bowel movements is practically a full-time job! As we lurch from clinic appointment to therapy session to full-on critical care stay and back again, our lives are dominated by Benjamin’s health.

Does this mean we have succumbed to the dreaded ‘medical model’ of disability? Where the disabled are considered to have something ‘wrong’ with them – something to be cured, treated, isolated, stigmatised, or even locked away?

With some disabilities it’s relatively easy to see a dichotomy between the medical and the social, but with children like Benjamin – with complex medical needs on top of, and largely due to, their underlying neurological differences – it’s more difficult to make clear distinctions. Whilst outwardly championing the social model, I’ve slowly fallen into the trap of seeing my son more as a patient than as a child.

It’s abundantly clear in his day to day life. While we’ve always been flexible, even spontaneous, with the girls, Benjamin is pretty much always in bed at the same time, hooked up to his feed pump, whatever else is going on around him. When we go away anywhere, while his sisters are free to run off and explore the minute we arrive, I shunt Benjamin off immediately to start setting up his positioning systems and field hospital, making sure all the equipment and drugs are in place so that his routine can run as smoothly as at home. While the girls are encouraged to run in the wind and jump in the puddles, some days I daren’t take him out of the house at all if the weather is too hostile.

And, while that means Benjamin stays as healthy as possible, it also means he misses out. He’s slowly but surely becoming relegated to a second-class member of the family, strapped to his profiling bed, whilst the rest of us carry on the business of living in the next room. Yes, we do his morning chest physio and nebulisers at the kitchen table alongside the girls eating their breakfast – but one day soon the need for efficiency and to minimise time-consuming hoist transfers will probably necessitate getting him ready in his bedroom. Yes, this year we managed to get all three children into our bed to open their Christmas stockings together – but soon the time will come when we simply can’t get Benjamin safely upstairs. Yes, his little sister likes to climb onto his bed in the mornings as he’s getting ready for the day, but how long before she tires of playing with his teddies and chatting with the carer?

And when Benjamin misses out, we all miss out. When Benjamin is excluded from family life, we are no longer a family.

This isn’t easy stuff to admit, not least because it makes the future look so bleak. If even I, his mum, am starting to relegate Benjamin to a patient rather than a son and a sibling, to a list of medical procedures rather than a child who needs to learn, grow, interact, love, and be loved, what hope is there for his future care providers after I am gone?

Thank goodness, then, for his school! His amazing teacher and support assistants treat Benjamin like any other child – he shares his news every morning; he studies the same topics as everybody else, in whatever way works best for him; he is able to choose toys to play with; he spends time with his friends; he gets homework; he is not allowed to shirk PE! Under their inspiration, Benjamin is thriving, growing, and a fully-participating member of his class.

Class ceilidh, Benji-style

And thank goodness for Partners in Policymaking, the internationally-recognised course for disabled self-advocates and parents of disabled children. When I joined the course late last year, I was all fired up to work towards Partners’ aims of inclusion and social justice; of driving change at national and local levels through policy and practice. But I wasn’t expecting it to work change in me. However, just three sessions in, already its gentle yet powerful message is transforming my vision (if I even had one) of life for Benjamin and our family.

Most importantly, Partners is giving me permission to dream. With a child like Benjamin it’s so tempting, and understandable, to live day by day, hour by hour. After all, we don’t know how long we will have him for so let’s make the most of every moment. Why waste time looking forward or back? And yet… what do we have to lose by assuming that Benjamin does have a future? We have everything to gain by thinking about what we want that future to look like and working towards it right now.

I am learning to dream that Benjamin will be happy, will be able to communicate his needs, desires and opinions, will have friends, and will be known in his community. I want to identify his particular gifts and skills, and uncover his true character. He should be able spend time with his friends outside of school – just like his sisters do. Why shouldn’t he join Beavers or an after-school sports club, or do ballet?

I am starting to dream of a realistic plan for his long-term care that doesn’t compromise on Benjamin’s enjoyment of life and involvement with the community. I want us to spend time together as a family – for my children to be children, together; for the girls to be sisters, not carers; and for Benjamin to be a brother, not a burden, now and in the long term.

I dream that we are able to be spontaneous, not constrained by Benjamin’s care needs. I want us to be able to make the most of the beautiful part of the world in which we live. We should be able to spend time together in the garden, to pop down to the harbour for an al fresco dinner at the pizza van, to play on the beach, to go on holiday.

In fact I have a list of – inspiring and desirable, but feasible and achievable – dreams nearly two pages long! But above all I dream that we can live an ordinary life.

It actually starts in those early hours of the morning, barefoot in my pyjamas, when the rest of the family are asleep. When it’s just Benjamin and I, and I am no longer torn between too many tasks, I realise that, first and foremost, he’s my child. When the hustle and bustle and the schedule and routine are stripped away and I’m just a mother responding to her little boy’s call. His need to be held, comforted, and listened to, just like any other child.

And, as I engage with him, I find a potential explanation for why Benjamin has been so upset recently. He has two wobbly teeth! A disconcerting and painful feeling for anyone, let alone a child as unprepared as Benji. I hadn’t been looking out for this, because the medical professionals had told us his small and under-developed skull would likely result in slower-than-average jaw and tooth development. But at just five years old, a good year earlier than his elder sister, he’s going to lose his first baby teeth already. My little boy really is growing up. He’s got a future to grow into, a future to dream for. Now I need to go out and make it happen.

Breaking the chain

Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. Benjamin’s health was up and down, as usual. No-one had enough sleep.

We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times it felt like I would never make it to the course I was due to go on at the weekend.

But did I ask for help? Did I call anyone to let off steam? Did I dare admit it’s been tough? No. These are things I find incredibly difficult.

In my mind, it’s because I voluntarily chose this less-travelled path. Unlike many of my fellow parents of disabled children, who received a diagnosis at birth with that painfully inappropriate “I’m sorry,” or those who faced the agonising months and years of feeling that ‘something was wrong’ before anyone would take them seriously, I had the luxury of choice and preparation. I knew that Benjamin was going to have significant physical disabilities, learning difficulties, developmental delays, and a limited life expectancy. I was offered an opt-out and I refused to take it. So, I’ve brought this all upon myself and my family. I’ve made my own bed and that’s where I must lie. I deserve everything that’s happened to me and I don’t deserve any help.

And because, for all the unborn Benjamins out there, I need to prove I can do this. I have to keep up a façade that everything’s perfect, because anything else would be fuel to the already rampant fire that disabled people and their families are scroungers, burdens, and second-class citizens. That it’s perfectly justified and in no way discriminatory to allow them to be aborted up to birth.

In other words, because I’m proud. People want to help, but I don’t ask and I won’t let them, because I fear their unspoken, “We told you so.”

I shared these feelings with some fellow parent bloggers and found that – while few were in the position of a prenatal diagnosis – many had experienced similar feelings. “I knew the chance of having twins was higher with IVF, so I felt I couldn’t ask for help when they arrived.” “My previous pregnancies were risky, so by deciding to have another child I had only myself to blame if anything went wrong.” “When I fell pregnant for the fourth time my mother told me I should have an abortion … I feel I can’t ask her to look after the kids now because she will think it’s my fault for having another child who now has so many appointments.” “I struggle to ask for help as I feel the need to prove the naysayers wrong.” “Because I wanted him so much, he’s mine; my burden.”

But, they also pointed out that, “Any pregnancy is risky.” “No-one knows what they’re going to get when they choose to have a child.” “Everyone who has children faces the possibility that their child may need extra help, support, care, or they themselves may need to support due to circumstances outwith their control.” And the wonderfully insightful Alison of Downright Joy simply said, “It takes a community to raise any child and your community are far better off for having your child in their midst… You and your child can give them an incredible opportunity to really value what it is to be human and live in community.”

I need to swallow that pride, don’t I? In being too vain to admit it’s hard, reluctant to ask for help, scared to show the ‘warts and all’ picture, I am also failing to show the beauty that Benjamin brings to our lives. I fought for Benjamin like I have never fought for anything before or since. But what’s the point in fighting for something if you don’t share it? Neither Benjamin nor his sisters belong to me; I don’t have exclusive rights.

How will the prevailing view of disability as something to be cured, shut away, or eliminated, ever change if we don’t give our families, friends, and neighbours the chance to experience disability and neurodiversity as things to be embraced, included, and learnt from? As normal. Families with disabled children need a village, and that village needs them too.

I did, after all, make it to my course this weekend. We were learning about inclusion (more, much more, on this in future posts). We learnt that the first key to inclusion is as simple as a welcome, a greeting. Many of us find it hard to greet disabled people. We don’t know how to say “hallo” in Makaton. We don’t know whether to make eye contact. We can’t look beyond the wheelchair. And such awkwardness stems, itself, from a lack of familiarity, from segregation and exclusion. It’s a self-perpetuating cycle – until we break the chain. By keeping Benjamin to myself, by trying to do it all myself, I’m extending that chain still further.

I want to share this letter written by Parents for Inclusion. I wish I, and my family, had read it before Benjamin was born.

“Dear Little One,

Welcome to the world! We are so glad that you have come. You have a right to be here and belong. You belong to your family, your community, your culture, your country, this world which we share together. How wonderful to have you here.

The people who love you may be feeling sad and scared and will need to cry away their fears. This does not mean they don’t love you and that you are not right for each other.

Like all children coming into this world you need to be loved and valued for who you are including any difficulties you may be facing. You need to be loved, touched, cuddled, smiled at, sung to, talked to, made to feel safe.

As you grow up you need to have fun and laughter, play and music, friends and people who are willing to listen and learn from you. Yes, you may need to have more help and support at times possibly all the time; but remember, the most important thing for you is to be included in ordinary life and for your life – long or short – to be valued. That is not different to any baby in this world.”

Yes, I deserve my beautiful boy … but everyone else deserves a part of him too. It’s time to break the chain.