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.

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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.

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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.

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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.

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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.

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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.”

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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.

Dear neighbour

Dear Neighbour,

How are you? I hope you’re having a good day. Me? I’m tired. Tired of squeezing a 25kg wheelchair into a car boot through a six-inch space. Tired of soaking the backs of my legs against the front bumper of your wet and dirty car. Tired of trying to squeeze a big car into a tight space when I’m in a hurry to get inside and do physio, medications, feeds and nappy changes. Tired of having to leave three children under seven on their own in the house while I inch my car forward just so I can get something out of the boot. I don’t understand why you would park up so close behind anyone that they couldn’t open their boot – but the Motability car of a disabled child who uses a wheelchair?

I was so excited the day we picked it up. We’d struggled on until Benjamin was three and we could join the Motability Scheme. Commuting to the hospital 30 miles away by train, running around trying to get a Car Club car when he was suddenly taken ill at school. I couldn’t believe it when the council arrived to paint our disabled bay the very day the car arrived! It was like a good omen – how often does that kind of thing happen? The car has made our lives so much easier, and safer. But they could be easier still if you were a little less petty and proprietary.

 

Our car is nearly 5 m long – we need a big car to fit in our family and the wheelchair and all the medical equipment, feeds, plastics and pads. Our disabled bay is 6 m long. If you take up a few precious inches of it, it doesn’t leave much manoeuvring space, does it? I’m not the best at parking – if I didn’t need to use this space I would go up the road or round the block to a larger one, to save myself the daily stress. But I do need this space, so I can’t.

What do I need to do? I’ve tried joking with you. I’ve tried knocking on your door and asking you politely. I’ve tried pointing out the sticker in the window that says ‘Please leave space for my wheelchair.’ I’ve tried parking at the front of my space (you encroach further), at the back of my space (you park as close as you possibly can). Hell, you’ve even had two parking tickets!

I know I am the underdog here. You are a patron of the arts, supporter of local causes, general town VIP. I am a nobody, an incomer to the town, a young (okay maybe not so young) mother, a benefit-claimant. But does your status entitle you to make our lives harder? Does it give you the right to ignore the Highway Code? (Section 2 part 239 says: …do not stop too close to a vehicle displaying a Blue Badge: remember, the occupant may need more room to get in or out.)

We absolutely love where we live, and we are blessed to have friendly, kind, thoughtful neighbours – most of whom I now call friends. But I’m starting to dread going out of the front door and all the stresses it now entails. All I need is to be able to park my one car in the disabled bay designated for it, and open all the doors, so that I can get my child and his equipment safely from house to car and back again. You have three cars; a healthy daughter; two functional legs. Would it really hurt to walk an extra 15 yards to your car? Sometimes you even park right up to ours when there’s a space directly in front of your own house anyway!

I’m sure your life isn’t easy either. I try to live by the adage that everyone is fighting a battle I know nothing about. I just don’t understand why you persist in making our lives more difficult and dangerous. We’ve come so far in this country in terms of access and inclusion, laws and recommendations. But attitudes like yours are still a stumbling block. Please, cut us a break and give us some space.

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I wish I didn’t have to rely on a car, but it’s not easy to use public transport with Benjamin – so our car really is our freedom

With thanks,

Benjamin’s mum

More than carers

Last week we said goodbye to someone we will all – Benjamin especially – miss like crazy. But it didn’t start out that way.

I’m a proud person – I don’t like asking for help (my husband will tell you that’s an understatement).

I’m a private person – I don’t like having other people in my house. Especially not when I’m in my oldest pyjamas, haven’t cleaned my teeth, and last night’s empty wine bottles are still sitting on the counter.

I’m a helicopter mum – I don’t trust anyone else near my kids.

And I’m a perfectionist – I like everything done ‘just so’ (the aforementioned husband has long since given up loading the dishwasher).

So the thought of having strangers coming into our house first thing in the morning and last thing in the evening wasn’t comfortable. At all. But these people aren’t strangers any more.

I’m not talking about our professionals, wonderful though they are – the physios, the OTs, the community nurses, the visiting teachers, who pop in for an hour once a fortnight, into the pre-tidied sitting room, do their particular specialist task with Benjamin, write up their notes and get back to the office.

I’m talking about the agency and the private carers, who get up at stupid o’clock to cycle through the pouring rain while I’m still sleeping; who change dirty pads and sometimes dirty bedlinen, and wash bottoms, and brush hair, and dress Benjamin’s stiff little arms and legs; who take the trouble and the time to learn tube-feeding, and chest physio even though we are their only client that needs it; who bring birthday presents that cost more than they get paid to be here; who wash things up when I’m not looking and help the girls on with their coats when we’re getting late for school; who text me when Benji’s in hospital because they really care how he is; who raise money for us in their spare time; who become friends that I care about, and helpers that I could not be without.

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Love my birthday elephant (at least I think it’s an elephant? It’s got tusks. And stripy legs. Could it be a raccoon? But that nose… an aadvark?). Anyway, I love it.

There’s Cameron, just eighteen years old and the best-dressed young man I have ever met, who arrives on the dot at 7.15 to make sure Benjamin is turned out equally perfectly each morning, turns a blind eye to the girls hurling cereal around the kitchen, and keeps me up to date with the East Lothian gossip.

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Thank goodness Cameron did my hair this morning

There’s Amanda, who whispers sweet nothings to Benji as she takes off her own shoes and socks and rolls up her trousers to shower him. He literally purrs as she washes his hair; you can see his whole body relax in her presence. She’s the kindest and most selfless person I know, and I can’t believe we are lucky enough to have her in our lives.

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There are others too, Christine, who always made Benji’s bed up neater than in a hotel before she could leave, and Julie, who cycled through rain, wind and snow to get to us and still always asked how I was each morning, and Susan, who would do the ironing if she had any of her hour left over.

And then there’s Tracy, who we sadly said goodbye to after being with us from day one; who was way more competent than me at every aspect of Benji’s care from washing and dressing to feeding and medications. She drove all the way from the Borders to put Benji to bed while we bickered over our spaghetti bolognaise. Every time the doorbell rings, Caitlin jumps up hopefully shouting “It’s TRACY!” She will be sadly missed and I hope we keep in touch.

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Did you say Tracy was coming?!

I have no idea why these people do what they do. They work unsociable hours, deal with all manner of bodily fluids (at least in this house), are generally ignored while the rest of us rush around getting our own selves ready for the day or eating our dinner, and are paid peanuts (if they are paid at all: if we cancel with even a few moments notice, even if they are already on their way to our house, for instance if Benjamin goes into hospital suddenly, the agency carers are paid nothing).

Swallowing my pride and baring our struggles to a social worker to get our eight hours care a week was one of the best things I ever did for our family. We have all got completely used to having people in the house (perhaps too used to it; I gave Amanda a bit of a shock by stripping down to my underwear to put my clothes in the washing machine the other day), that without them the evenings seem quiet, and the mornings, well the mornings are just chaos. Having people help with Benjamin at the critically busy times of day allows all our children to get the care and attention they deserve. It means we sometimes even get to school on time. It’s brought us new friends and a new perspective on our local community. And it’s a good incentive to buy some new pyjamas.

When life just carries on as normal

If you’re a parent, you’ll likely remember the feeling (how could you ever forget?) of emerging, blinking, into the light. Maybe from the hospital doorway; maybe your own front door. Maybe the very same day that precious bundle made its dramatic entry into the world; maybe one, two, or many, many days later. And… nobody notices. Everyone is rushing past on their way to work or wherever. Heads down. Headphones on. Grim faces. As they do every day. How can they? How can they just carry on as normal, as if nothing has happened. When the world is so changed? When for you, everything has changed.

If you’re not a parent, perhaps you felt it the morning after you first slept with the love of your life. Why can’t the world see I’m different? That nothing will ever be the same again.

The emotion is akin to that (and this is my poorest analogy, but I am an unashamed academic) I felt as a student when I’d been up all night writing the best essay of my life (only to have it shot down in a tutorial a few days later!). Tired but exhilarated. The world seems shifted: clearer, fresher, better resolved. In part delirium, in part clarity of thought, both probably born of exhaustion more than anything else.

It’s that feeling I get when I’ve been up all night saving a life.

His sats are dropping. I never believe the sats monitor but these are really dropping. He’s going blue. Literally choking on his own secretions. There’s no time to shout for help (and the last thing you want is to wake his sisters to see him like this; to see you, like this). There’s no time to call an ambulance, nothing like enough time. There’s no-one else. Just me, naked, a suction machine and a thin catheter. Catheter after catheter. Cursing the packets as I fumble them open. Cursing my shaking hands as I follow the tortuous path from his nose down towards his lungs. Holding my own breath until finally he can breathe again. Holding him close until his colour returns to normal. Kissing his forehead until, shivering with cold and fear, I creep back under the duvet, holding my sleeping husband for reassurance, holding the video-monitor next to my face.

I realise paramedics do this all the time. And nurses. Firefighters; lifeboatmen; midwives. I guess maybe they get used to it? Maybe it’s different when it’s your own child?

I am lucky. I have had to save his life maybe ten, maybe a dozen times only. Some mothers I know daren’t sleep unless there is an overnight carer with their child, maybe not even then. They lie with an oxygen bag and mask in their hands, ready to breathe for their child who may stop breathing several times a night.

And in the morning, I get up (or stay up). What else is there to do? There’s no time for self-indulgence, I’ve a family to run. Make a strong coffee, have a shower. Walk the girls to school. Hang out the washing. Busyness is good; I don’t want to sit and think.

I rarely tell anyone. “Did you sleep well dear?” “Not great…” How do you start a conversation with “I saved a life last night”?

And the feeling passes. Dwindles. Fades. Everything in my life returns to normal too. At least it has every time so far. Until the day I fail. One day I will fail and then nothing will ever be normal again.

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It ain’t easy being green

So, this week I got into an argument with some people I don’t know on Facebook (I know, I know, I should know better). The argument was about this picture, originally seen in a viral tweet:

Screenshot of a tweet showning an image of peeled oranges inside plastic cartons

A friend shared the photo with the single strapline ‘wtf’ and there followed several comments along the lines of ‘carry a pocket knife … no excuse for this.’

So I made the mistake of pointing out that some people, actually, do have an excuse, nay, a reason, to need such items, for instance poor coordination or muscular weakness, and that perhaps we could be open-minded enough to consider the difference such pre-prepared foods make to the potential for living an independent life as a person with a disability (as had already been adeptly pointed out on several news outlets such as The Metro). Sadly, few other commenters were interested in being open-minded, they only wanted to show off their green credentials by ramming the point about plastics home.

Similar arguments have been raging recently over the phasing out of disposable plastic straws, for which neither paper, stainless steel, or reusable plastic as yet provide a perfect alternative for those who cannot easily drink from a cup, can, or bottle. Now I do agree – who couldn’t, having seen the evidence on Blue Planet 2? – that, for reasons ranging from climate change to marine conservation to the depletion of resources, we need to reduce massively our reliance on plastic. In fact, living less than a mile from one of Scotland’s most beautiful (albeit inaccessible to wheelchairs) beaches, I am acutely aware of the despoiling nature of drinking straws, cotton buds, discarded flip-flops, etc., etc.

A beach covered in plastic trash

But. For some members of society there’s not ‘no excuse’ for using plastic drinking straws. They can’t just ‘carry a pocket knife’ and peel their own oranges. And vilifying these people doesn’t help build a compassionate society that shows concern both for our neighbours and for the environment we all share.

I try to be green. I walk or cycle where possible. I compost waste and use cloth nappies. We have insulated our house and don’t heat the rooms we don’t use. It’s in our own best interests: I know that working towards a more sustainable way of life is of most benefit to the most vulnerable, with eco-catastrophes such as more frequent and severe winter storms, rising fuel and food prices, and the loss of cultivable and habitable land, impacting hardest on disadvantaged groups including those with disabilities.

A pile of enteral syringes, of varying sizes

But, I also know that, because of Benjamin, our life is less sustainable than I would like. We have the (gas-fired) central heating on at night to keep him warm. We use – and discard – plastic containers, tubes, and packages every day as part of the process of feeding him safely. We have to drive places because public transport is not always feasible. Should we be mocked on social media for this? Should we be criticised for consuming materials that, literally, keep our son alive? Should being green trump caring for our most vulnerable?

Perhaps what is needed is legislation, not to outlaw single-use plastics entirely, but to limit them to those that cannot do without them. Of course, this will eventually make them effectively unavailable even to those that do need them, because a specialist label almost always means a specialist price-tag: the more ‘niche’ a product becomes, the more prohibitive its cost. Perhaps instead plastic goods should be available only on prescription, like antibiotics, to prevent irresponsible users putting everyone at risk. But with some clinical commissioning groups already considering cutting funding for non-pharmaceutical items such as prescription formula, I’m not sure this would be popular either.

There’s no easy answer. Clearly we should seek to develop safe, effective, reasonably-priced, sustainable alternatives to single-use plastics. But we aren’t there yet, and in the meantime I’m not sure banning them and stigmatising their users is the way forward. People with disabilities are discriminated against and misunderstood already; this will just provide the bullies and perpetrators of hate-crime with another weapon in their armoury.

So how can we reduce our plastic use without an outright ban that negatively impacts upon the small sector of society that truly can’t live without them? The first step has to be education: let’s keep up the impetus that Blue Planet 2 has started. At the same time, we need to support the development of safe, effective, affordable, desirable, and sustainable alternatives. In the meantime, it’s up to us all to be responsible: if you don’t depend upon plastics, don’t use them: leave them for those that do (I only hope people’s attitude to plastics differs from their attitude to disabled parking bays…!). With tolerance, thoughtfulness, and responsibility we could build a society that values its environment and its most vulnerable members. Is that too much to ask?

Benjamin, a smiling four-year old boy wearing glasses

These specs aren’t single-use plastic are they mum?

Postcode Lottery

I’ve always thought of myself as fortunate. Opportunities have landed in my path. My parents bought a house in the catchment area for a good school. My teachers saw to it that I got into a good university. That good education got me a job that I love. I have three beautiful children. My husband works hard so that I don’t have to choose between my career and spending time with my children. Childbirth aside, touch wood, I have never needed a night in hospital. I have not yet been reliant on benefits. We have been able to choose, get a mortgage for, and afford a deposit on, a perfect home in a stunning part of the world.

Benjamin looking contented, wearing a warm jacket in a SN buggy

Comfy in his new buggy

Now we have Benjamin, still, we are fortunate. The healthcare he receives is second-to-none. He gets all the therapy in the community that he needs. All the equipment that he requires is also provided (albeit a little slow to arrive at times). He attends a wonderful SEN nursery and will attend a wonderful SEN school. He has a dedicated pair of support workers who keep him safe (and give him many, many cuddles) whenever I am not with him. Social care-funded agency carers help us for six hours a week, Benjamin gets two nights a month in a specialist respite care unit, and we have the support of our children’s hospice whenever we need it. Benjamin gets disability living allowance, we have a car through Motability and a blue badge. Our house will soon be adapted to suit Benjamin’s needs and the local authority will fund 80% of the cheapest option as quoted by the cheapest supplier; moreover, the work will should be completed by the time we really need it! Yes, we had to fill out some forms and write some letters. Yes, we had to dig around to find out what we were entitled to and we had to fight a little to get some of that. Yes, once or twice I have had to write to my MP and the local paper. But, generally, we get what Benjamin needs and what we as a family need. We are indeed fortunate, or so I thought.

Benjy in his kitchen chair, with Caitlin sitting on his lap, her hand on his chest as if doing chest physio

Expert physio

Then, I started talking to other parents. Some families, in local authorities not too far away, get 12 hours nursing care a day. Some families get additional care in the school holidays. Some families received an automatic referral to psychological support to help them to deal with the trauma surrounding giving birth to a child with severe disabilities. Some families get twenty new syringes a day. Some families get liquid drugs so they don’t have to faff around crushing and grinding tablets to within an inch of their life to ensure they don’t block the feeding tube… I started to feel less fortunate. I started to feel jealous.

Then, I started talking to other parents. Some families’ only respite centre is being closed down. Some families have to self-fund essential equipment such as a suitable wheelchair. Some families can’t get a blue badge even though some days their child can’t get out of bed. Some families have to fight and fight and fight and go to court and pour every ounce of their energy and resources into fighting to get their child into a school that simply meets their needs. Some parents are forced to give up that battle, give up their career, and home-school their children. Some carers are carrying 50 kg children up and down stairs, or risking their backs lifting them into the bath because adaptations plans have stalled. Some families are crammed into a single room in a bed-and-breakfast because their local authority can’t find, won’t build, or refuse to adapt, a suitable property for their needs. Some children have seen half-a-dozen different paediatricians and never the same one twice. Some children have been discharged from all the services that might be able to help them. Some parents are accused of faking their child’s condition, or of poor parenting. Some are pushed so close to breaking point that they fear having their children taken away… Some families have their children taken away. I started to feel like the luckiest mother on earth. There, but for the grace of God, go I.

Why does it have to be like this?

Why do families at different ends of the same street, let alone different ends of the country, have to meet different criteria to get the same support? Why do families in very similar circumstances receive such vastly different levels of care (if any)? Why are we placed in these situations where we feel jealous, or guilty; where we have to compete? Why can’t there be a level playing field? Why isn’t access to support – health, education, social care, housing, advocacy – based on need and not on where you live, how deep you dig for information, how hard you’re prepared to fight, how well educated you are, who you know, who you can afford to employ, whether you are able to give up work, even whether you earn little enough to qualify for support (yes, it can work both ways)?

A circle of reusable nappies in a range of pastel shades

‘Why does it have to be like this?’ I asked Jenny Gilruth MSP at a recent round table discussion at the Scottish Parliament, Getting it Right for Parents of Children with Exceptional Healthcare Needs. She said I couldn’t expect everything to be centralised. But I’m not asking for provision to be centralised, I’m just asking for the rules, the criteria, the tick-boxes, the ‘decision making tools’ to be standardised. It could be as simple as saying ‘which area provides an example of good practice in terms of [insert essential service here]? Let’s employ their strategy across the board.’ How can it be so difficult to ensure, for example, that all children with continence needs should receive enough suitable continence products to meet their needs from the same age? Presently, some NHS boards provide pads from age three, others age five; some areas won’t supply pull-ups and others won’t supply cloth nappies; and some children get three pads per day while others get an unlimited supply. It should be as simple as every relevant organisation paying more than lip service to GIRFEC (Getting it Right for Every Child, in Scotland, or its English and Welsh equivalent Every Child Matters).

We might live at different ends of the country, but unlike some politicians, policymakers and bureaucrats, SEN parents do talk to each other. We know there are discrepancies, huge discrepancies. We share as much knowledge and as many tricks as we can to help each other out, to level the hideously uneven playing field we find ourselves on. We try to get around the borders that divide us and to fight as a team, while the system tries to make us compete to be the loudest voice clamouring for limited funding and limited support. We know it’s a postcode lottery, and we know it’s all our children that are losing out.

Lottery tickets, a pen, Euro notes and coins