Therapy for two

To be honest, I’m terrible at making time to do therapy with Benjamin. A quick stretch while I’m changing his nappy. A couple of rolls when we’re getting dressed in the morning. Plonk him in his chair facing in a slightly different direction each day, give him some toys to look at and that’s about it.

To be honest, by the time I’ve done all the treatments that keep him alive – the inhalers and the nebulisers and the chest physio and n-p suctioning; by the time I’ve given him his medication six times a day and made up his feeds and checked his stoma and washed and dried all the syringes; by the time I’ve done the day-to-day essentials – washed him and dressed him, brushed his hair, changed his nappies, set up his sleep system, carried him from room to room, there doesn’t seem to be much time left for ‘therapies:’ the things that won’t keep him alive but will help him develop. The things that will stretch him, mentally and physically. They drop to the bottom of the list, somewhere between making sure everyone gets fed and catching up on the endless piles of paperwork that come with having a child with complex needs.

To be honest, putting him into shoes or splints or getting him onto a gym ball is quite hard work – he’s not getting any lighter or any more flexible. Getting him into his standing frame is really hard work. Sometimes even keeping him awake or finding a toy that grabs his attention is really, really hard. I’m scared of hurting his stoma, fearful of pulling out his feeding tube. I’m worried I might drop him!

And I don’t want to push him – we’ve spent too much time in and out of hospital to want to push him. Too much time wondering if his seizures could be caused by overstimulation. Too much time fearing that rolling around on the floor during physio would make his reflux worse and therefore make his chest worse. Two days a week he goes to nursery, which is brilliant but exhausting for him: there’s no way he’d manage any exercises on top of that. There’s usually at least one other day in the week he’ll have some kind of therapy anyway – a physio visit, or a session with the visiting teacher, and after 45 minutes’ intense interaction with them he’s shattered. Maybe he’ll be a bit off colour one day; another day he’ll have had a bad night and just need to sleep. And then it’s the weekend – surely he deserves a break on the weekend? Or is that just me?

Because Benjamin is classed as ‘life-limited,’ I justify it by the reasoning Saira Shah, author of the Mouseproof Kitchen, calls upon when speaking about her daughter, Ailsa, before she passed away at the age of eight. “What’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked, being dangled upside down. I don’t see why she can’t have a life where she is just cuddled.” But for us this has degenerated into a life where he just sits and watches me work.

Our physiotherapist is wonderfully understanding. ‘Don’t see it as a therapy programme,’ she says, ‘you have enough on your plate. Just do it when you’re sitting with him anyway.’ But when am I ever ‘just sitting’ with him? When do I ever sit, alone or with my children? When do I stop rushing around and connect with any of them?

And then, then there are the girls. They are both part of the problem and part of the solution. It is so hard to find time to focus upon Benjamin, who just sits there passively, dozing, when there are two caterwauling bundles of energy, one stout and curly, one lithe and blonde, pulling you in opposite directions with opposite vociferous demands.

But, no thanks to my lax approach (and partly thanks to our sessions at the Bobath Centre), he’s getting good. He really is. He can look to both sides now – and hold it. He can sit straight and tall with only a minimum of support at his lower back. He can bring his head up with you from lying. He can hold his head up when you lean him sideways. I hadn’t really noticed until I was watching his physiotherapist working with him one day. It’s much easier to see when you’re watching from a distance. And suddenly I thought, hang on, I want some of that.

It was like a switch flipped in my head. Doing Benjy’s therapy isn’t a chore, to be got through as quickly as possible, to be ticked off the list. Benjy’s therapy isn’t in conflict with enjoying him – it’s time to enjoy him, to let him show me what he can do. It’s precious time to spend with him, revelling in his achievements, building a better connection. Just as I spend time with Jackie reading stories before bed, or building Lego. Just as I spend time breastfeeding Caitlin and pushing her on the swings.

I guess I’m starting to appreciate this a bit more now he’s getting older and I’m not necessarily with him 24/7. With his carers, nursery, respite, and time at Rachel House (not to mention time in hospital), we’re slowly dividing his care up between more and more people, which means less and less Benjy-time for me. I need to start claiming some of that time back in ways we will both enjoy and benefit from.

And could it even help me to slow down a bit? Instead of rushing around the house could taking half an hour to ‘just sit’ with Benjy also be a half hour for me to breathe, relax and regroup?

And could it actually be of benefit to his sisters too? Instead of leaving them in front of some uncensored crap on YouTubeCbeebies could we at least and watch Cbeebies together, in the same room, and talk about what we’re watching, while Benjy’s practising his moves? I could learn a lot from Benjy’s little sister, bouncing up and down on her tiptoes in front of his chair going ‘Jenjy – uh – uh – uh – Jenjy’ and demanding to have him lowered down to her height to play. Because that’s all his therapy is, really, play. It’s not arduous, it’s not unpleasant. It’s a bit of stretching out, a bit of rolling on a gym ball, a bit of singing nursery rhymes and doing the actions, a bit of looking at things he likes to look at. What am I making such a meal about? Why am I putting it off? Therapy isn’t in conflict with the cuddles, it’s a way to cuddle him more. We could all do with a few more cuddles in our lives – and Benjy-cuddles are the very best.

We are the 57%

A few days ago, in a fit of frustration, I churned out a quick post about parking. Exciting, huh? But to my surprise it’s received over 11,000 views and generated a whole lot more Twitter traffic than I’ve ever had before.

So, what gives? Even posts I’ve sponsored on Facebook rarely get more than a few hundred views. Of all the posts I’ve written – on the difficulties of being undiagnosed, on the amazing work of children’s hospices, on the sanctity of human life, even on the importance of properly accessible toilets (which are certainly more scarce and arguably more important than parking bays), it’s the one on parking that’s sparked the most interest. I’m not bragging; I’m gutted.

So, what gives? Sure, in the UK we love our cars. We talk about the traffic almost as much as we talk about the weather. Victoria Coren Mitchell, presenter of Radio 4’s Women Talking About Cars, said the other day that for women, especially, cars represent a very special combination of both freedom and safety. For people with disabilities, cars probably mean even more in both those respects. Having only had one for six months, I love my Benjamin’s car, although I wish we didn’t have to use it so much. But I certainly don’t love parking – once I’ve got within a yard or two of the kerb I just want to shut the door and forget about it.

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If this was a disabled parking bay I guess I’d be tempted to park in it too…

So, what gives? Sure, in the UK we hate being told what to do – whether by a traffic warden, or Brussels, or a yellow line on the road and a blue badge in the window. But does that fully explain why I struck such a chord (or hit such a nerve, depending on your side of the debate) with a post about parking?

My theory is, it’s because parking is one of the few everyday battle lines between the disabled and the able. In fact, it’s one of the few situations in which disabled people are actually visible in our society. Yes, the able can complain about those of us ‘scrounging’ benefits. They can complain about us giving birth to children who will be nothing but a drain on society. They can complain about the effect inclusion has on the educational achievement of their mainstream children (hint: bugger all, apart from possibly making them less judgemental than their parents). But unless you actually know a person with a disability, you are unlikely to come up against these issues every day. Yet even if you don’t know a person with a disability, you probably park in a supermarket, school or public car park on a fairly regular basis.

And that’s the root of the problem really, isn’t it. Many people simply don’t know a person with a disability – or don’t realise they do. The Disabled Children’s Partnership, a coalition of charities campaigning to improve support for disabled children, young people and families, last week launched a new campaign called The Secret Life of Us. The aim of the campaign is to change the fact that an amazing 43% of the British public don’t know anyone who is disabled.

In parking, the 57% of us who have a disability, care for someone with a disability, or know someone with a disability, come directly up against the 43% who, through no fault of their own, don’t think they know anyone with a disability. The former know all too well the need for disabled bays, and cannot understand why anyone else would park in such spaces when they are so clearly needed. The latter cannot see the need for disabled bays, consider them an unearned privilege – particularly if we are not in a wheelchair, do not look disabled, or have children that are small enough to lift – and don’t see why they shouldn’t use them when it suits them.

So maybe this is where we should start. At the battle line. At one of the few places where the 57% become visible to the 43%. Disabled parking spaces are all about accessibility. Without accessibility it is very hard to have inclusion. Without inclusion it’s impossible to have integration. Without integration, it is extremely difficult to foster understanding. And without understanding, well why the hell shouldn’t I use that disabled parking space to save me a couple of minutes of my valuable time as a contributing member of society popping into the shop to get a pint of milk? It’s a vicious circle.

The Secret Life of Us campaign aims to break that circle, to help us – the 43% and the 57% – get to know one another. Now, the 43% can’t do anything about this – they don’t know we exist, remember. Their hands are tied. It’s up to us, the 57%, to start building awareness, to be brave and not shy away from sharing our stories and showing our lives in all their flaws and their beauty. Because everyone’s life – disabled or not – has flaws and it has beauty.

If you read my blog (thank you!) you’ll have a glimpse of that: stressful, sometimes traumatic, hard work, rewarding, ever-changing and featuring rather a lot of bodily fluids… But there’s a lot more I can do. Everyone in my community knows Benjamin, but not everyone in my community knows that I had anorexia in my twenties. I’m in awe of friends who are becoming more open about their mental health – in person and on social media. Social media certainly has a role to play here: the ease with which we can share The Secret Lives of Us – anonymously if we wish to – makes now an ideal time to bridge the gap between the 57% and the 43%.

I’m not saying we all need to go around shouting about our bowel movements and breakdowns and whether we’ve had breakfast all day long… but if the 57% can share a little more and the 43% can listen a little more, maybe we can all judge a little less. Because parking shouldn’t be a battle line. There shouldn’t be any everyday battle lines. ‘The disabled population is the world’s largest minority of which anyone can become a part at any time.’ We are the 57% – and one day you might be too.

If you would like to be involved in the Disabled Children’s Partnership, you can sign up at http://e-activist.com/ea-action/action?ea.client.id=78&ea.campaign.id=71897, follow it on Facebook and on Twitter. Share your stories, and read others, using the hashtag #SecretLifeofUs

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I’ll let you into a secret: sometimes our life is a bit dull #SecretLifeofUs

This is a disabled parking bay…

This is a disabled parking bay. There are four of them at my son’s school. They are close to the school entrance and they are wider than normal bays. Doesn’t it look inviting?

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This is my son Benjamin’s blue badge. I had to apply for it, and pay for it. Many disabled people have to fight for it. It entitles me to park in the disabled bays at my son’s school (and anywhere else) when I have him with me and he will be getting out of the vehicle, or when I will be picking him up and putting him into the vehicle.

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These are four of the cars that were parked in the disabled spaces at my son’s school today. None of them is displaying a blue badge.

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Maybe their drivers aren’t aware that although this isn’t a public road the school still enforces the blue badge scheme? Maybe they thought they had a good reason to park in the disabled bays – all four of them? Maybe they were short of time? Maybe they’re just lazy? Well, in case any of them are reading this…

Here are some of the reasons I need to park in these bays:

  • Benjamin comes with a lot of equipment: not just a wheelchair, but a feeding pump, suction pump, medications, syringes, nappies. More equipment than I can fit on his wheelchair, which means I have to push it with one hand. The further I have to push it with one hand, the less safe that journey is for him. If I have my other children with me, well, they just have to take their chances.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to park it (and him in it) behind the car, in the path of other vehicles looking for their own parking spaces.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to carry him (all 18 kilos of him) round to the back of the car. I don’t mind the damage to my back. What I do mind is the risk of pulling out his feeding tube, which won’t stretch from his seat to behind the car. If his feeding tube is pulled out, he has to undergo an operation under general anaesthetic to replace it. When Benjamin undergoes an operation under general anaesthetic, he usually comes back ventilated and in intensive care.
  • If I have to park on the road (which I usually do, because if the disabled bays are full you can bet it’s because all the non-disabled bays are full), all of the above apply, plus I have to carry Benjamin out into the path of oncoming traffic.
  • If I have to park on the road, the likelihood is someone else will park so close up to the back of my car that I won’t be able to open the boot, let alone get Benjamin’s wheelchair into it.
  • One of Benjamin’s problems is that he cannot control his own temperature. In the extra time it takes me to get him out of a warm car into his buggy and under a blanket if the buggy is at the back of the car and not beside the door, he can become hypothermic. In the extra time it takes me to push the buggy from the main road to the school, he can become hypothermic. An extra couple of minutes in the cold can mean several hours of struggling to get his temperature and heart rate stabilized at a normal level.
  • If Benjamin becomes suddenly ill, which he does, often, without warning, and dangerously, I need to be able to pick him up and get him into the car and off to hospital, pronto. I may not have time to wait for an ambulance. I may not have time to drive around looking for a parking space, walk round the corner from that parking space to the school, and push Benjamin back round that corner to the car. Minutes count.

Here are some of the reasons you may not need to park in these bays:

  • You are not disabled
  • You don’t have a blue badge
  • You don’t have a disabled child
  • You don’t have a pile of medical equipment to transport
  • You can walk 100 yards without getting hypothermic (no, that’s not an exaggeration)
  • You can self-transfer to your car seat
  • You don’t need to get a wheelchair into your boot (God forbid need enough space to use a ramp or hoist…)

Now, you may think ‘I’m only parking there for a minute.’ But if that minute is the minute when Benjamin and I arrive at school, you’ve put us in an unsafe situation for the whole day.

You may think this is a small, petty issue. But this issue puts my son, and many others like him (after all, this is a school with a special unit attached that caters for children with severe and complex needs from across the county) at risk.

Please, think again. Thank you.

Our Inclusive Home

The last thing I want is respite

My family are the best. Not the best behaved. Not the cleanest and tidiest. Not the most talented. Not even the best at getting on together. But all different and complementary, hilarious and frustrating in equal measures, we love each other to bits even when we’re fighting, and I cannot ever imagine life without any one of them.

But keeping a family, even the best family, going is hard work. Breastfeeding a fifteen month-old the size of a baby hippo is hard work. Stopping a five year-old from watching Paw Patrol all day is hard work. Doing an hour of chest physio every morning before the school run is hard work. Pushing a wheelchair with one hand and a five year-old on a bicycle with the other up a hill whilst carrying the aforementioned baby hippo on your front is hard work.

Half-sleeping with a video monitor three inches from your ear every night takes its toll. Keeping a running total of your earnings in your head each month so you don’t go over the limit and lose your carer’s allowance takes its toll. Writing letters to the council to try and get the support Benjamin needs to attend nursery takes its toll. Driving sixty miles a day to and from the hospital takes its toll.

So don’t get me wrong, I need respite. I know that we are incredibly fortunate to get respite and I am embarrassingly grateful for it. When Benjy is at respite we do things we can’t do when he is with us, like taking the girls to a birthday party at an inaccessible venue, like having a late night and a late lie the next morning. Like, er, hoovering the car out and washing all the covers on his chair. So we do access respite, and we appreciate it enormously, even if we do phone morning and night to see how Benjy is doing, and our family always feels like something is missing until he comes home.

We need respite, but when often I feel pulled in three, no four (don’t forget hubby), no five (I do have a job), maybe even six (can I include me?) different directions; when I want to be there for all my children but they are all in different parts of the county; when I just haven’t got enough arms for all the cuddles that are needed, the last thing I want is for someone to take one of my family off my hands. When my child is classed as ‘life-limited,’ and the time we have with him may be short, the last thing I want is respite.

What I want is a way to be with all my family, so that they are all safe, all their needs are met, and there is plenty of time for love and laughter and cuddles. So that I have two hands to hold them and not one taken up with a syringe or catheter. So that I have two ears to hear their stories and not one always listening out for a crisis.

That’s what Rachel House provides.

We are lucky enough to be here at the moment, on the shores of beautiful Loch Leven on the hottest weekend of the year. Last night I had a glass of wine with my husband under the stars while all three children slept. Yesterday we wandered around the farmer’s market, stroked some baby lambs, met friends for a picnic, a catch-up and an impromptu ice cream – Benjy included. In the evening we played with the girls in the garden while Benjy had a bath with underwater lights. This morning I had a massage and the girls and Daddy played with Benjy in the jacuzzi. Then we’ll all sit down to a proper Sunday lunch.

Rachel House is one of Scotland’s two children’s hospices, run by CHAS, Children’s Hospices Across Scotland. The wonderful staff provide top quality care for Benjamin: they do his meds, his feeds, his physio, …, all the boring stuff, but still let us join in the playtime, the goodnight kisses and the good morning cuddles. They free up the part of my brain that’s usually filled with when Benjy’s next medications are due, how much feed he’s had, whether his chest is sounding crackly and ‘is that just dystonia or is it a seizure?’ so that I can give the girls the whole of my attention for once (if they aren’t too busy painting with the activities team, dressing up in the playroom, or charging round the garden on bikes and diggers). And they provide top quality care for us, too, in the form of comfy beds, home-cooked meals and as much coffee and cake as we can manage.

Rachel House lets me give the girls some time, our marriage some time, even get some ‘me-time,’ without missing out on my Benjy smiles and Benjy cuddles. And Benjy smiles and Benjy cuddles are very frequent at Rachel House. So no matter how many of them the staff try to sneak, there’s always plenty left for us.

Rachel House gives us time, space and support to be a family. It lets us recharge so we function better as a family when we get home. It lets us relax as if we are part of their family. Respite has its place, but when the last thing you want is respite, Rachel House is the place to be.

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Obligatory cheesy family photo courtesy Katrina Lear Photography (http://katrinalearphotography.co.uk/)

**Today marks the last day of Children’s Hospice Week, organised by Together for Short Lives. This year the aim of the week is to turn up the volume on children’s palliative care, to raise awareness about the number and needs of children with life-limiting conditions and to celebrate all the lifeline services that children and families rely on; to amplify families’ voices and change people’s perceptions about some of the myths surrounding children’s palliative care. Our children’s hospice, Rachel House is run by Children’s Hospices Across Scotland. Find out how you can help CHAS here. Thank you**

First world problems

‘First world problems.’ It’s a phrase I see quite a lot on my newsfeeds. Used self-deprecatingly to mean, ‘This shouldn’t really get to me but I need to moan about it,’ or to joke about someone overheard in the supermarket:

‘Waitrose had run out of own-brand humus. I don’t know what I’m going to do for lunch now. #firstworldproblems’

‘My car’s broken down. I had to walk the kids to school without any mascara on. #firstworldproblems’

I even came across a blog post the other day about the ‘dilemma’ of ‘choosing the right sunglasses for your face shape. I mean, wtf, really?

And now this. More than twenty people dead, many of them children. Nearly sixty people injured. Young people still missing. Families torn apart. Parents grieving. Siblings who will never grow up together. Puts it in perspective, doesn’t it?

How can I go on, complaining about the antisocial parking outside my house, when somebody lost a child last night?

How can I go on, making a fuss about the lack of accessible toilets, when somebody lost a child last night?

How can I go on, protesting about having to accompany Benjamin to nursery, when somebody lost a child last night?

How can I go on, trying to take a stand on climate change, when somebody lost a child last night?

How can I go on, fighting discrimination against disabled people before and after birth, when somebody lost a child last night?

Because if I don’t go on, terror has won. If we don’t stand up for fairness, thoughtfulness and compassion even in the small things, this is where it ends. Whether it’s the man giving a stranger a hug or a lift home from the Manchester Arena, or one mum giving another the twenty pence she needs for the coffee machine outside ICU. Whether it’s fighting for a little bit more understanding among my neighbours, or for the rights and dignities of people I’ll never meet. Whether it’s casting a can of beans into a food bank, or casting a vote on June 8th. I may have a small voice, but I won’t be silenced, against those who would have us all clawing our way to the top and crushing those who fall beneath. Or those who would have us give up, close our doors, and at the same time close our hearts.

Yes, in the context of last night’s events, changing places toilets and preschool SEND provision are rightly viewed as first world problems. But in the context of last night’s events, life can be short and every problem is worth solving, to make every life as good as it could be. Okay maybe not the humus…

… in fact, maybe even the humus. If you have a little boy with ASD who is only able to eat something exactly that shade of beige and that particular style of mushiness. Maybe even the humus, if you’re an anorexic teenager who has pushed and pushed and pushed herself to go buy a snack that is healthy and contains some calories and then is completely floored to find it not there and ends up going home and eating nothing because anything else just hurts too much. I’ve been there. Everyone is fighting a battle you know nothing about. Let’s keep fighting, together, without judgement and with compassion.

#Manchester

Just because it’s difficult, doesn’t make it right

A few of days ago an article popped up on my timeline. It was entitled How working in an abortion clinic changed my mind about terminations, and was written by a student midwife, Lucy Kelly. A bit ‘clickbaity,’ but I was baited and I clicked.

It is a beautifully written, convincing, strongly worded essay. The direction in which the author changed her mind (spoiler alert) was towards terminations. She wasn’t put off by what she bravely and compassionately witnessed, she was inspired by the fortitude of the women she met in that clinic. And some of what she wrote, yes, I do agree with. It is a terrible decision to have to make and I do not believe many parents take it lightly, whatever they decide.

But some of it, profoundly, no.

‘Women who are having late term abortions are only doing so if their baby will not have any quality of life outside the womb.’

Termination of pregnancy after 24 weeks may legally be considered, in the UK at least, on the grounds of foetal abnormality if there is a substantial risk that the child would suffer physical or mental abnormalities that would result in serious handicap. There is no definition, in the law, as to what constitutes a ‘substantial risk’ or a ‘serious handicap.’ Quality of life is not required to be evaluated.

Sadly, on this basis, women are undergoing mid and late term abortions of babies with Down syndrome, with spina bifida, with hydrocephalus, with cleft palate. Conditions which do not, necessarily, affect ‘quality of life,’ whatever that means. Let alone affect it so much as for it to be preferable to have no life at all. Who are we to decide, as mothers or as a society, that those lives are not worth living, or would be better not lived?

I was advised to abort my son at 38 weeks because his brain was not properly formed. Because he would likely never walk, talk or feed himself. Ours wasn’t one of those miracle stories you read in the Mail where the doctors are proved wrong. My son is indeed profoundly disabled – he will never walk, talk, feed himself. He will likely never roll, sit, or support his own head. However, I would dispute anyone who says he has no quality of life.

And, while the child’s quality of life may be one of the reasons (rightly or wrongly) for women to have a late term abortion, I know that it is not the only one. In fact, the child’s quality of life may be less important in the decision-making than the effect on the mother and any other members of the family. I know because I could have been one of those women. The arguments (and yes, there were arguments: painful, heated, lengthy and almost irreparable ones) surrounding our decision whether to abort, centred partly on our son’s likely quality of life, but partly on the impact on the rest of the family – myself, my husband, our at the time one-year-old daughter, the grandparents. Had we decided to abort – and don’t get me wrong, we very nearly did – it would have been in no small part for the latter reason: to ensure a better life for our existing daughter, to protect her from the isolation, stigma, and lack of opportunity that may come with being sibling to a disabled child. Protection that I believe could and should be achieved by changes in society: by inclusion, accessibility, support, kindness and a lack of judgment. Not by terminating the life of an innocent individual.

I do not doubt that the mothers, fathers, families, who choose abortion on the grounds of disability do so with much heart-searching. As, in fact, do those who choose abortion for other reasons. They may do it on the basis of misinformation. They may do it under strong pressure. They may do it because they truly believe they have no other option. But that does not make it right.

‘I cannot fathom how any politician can believe that they understand more about a woman’s health, and survival, than the doctor caring for her… This is not your life. This is not your pregnancy. This is not your experience. You do not get an opinion’

No, I cannot fathom that, but this is not just – or often even at all, except in incredibly rare and tragic circumstances – about the mother’s life. This is about – as Ms Kelly agrees from 24 weeks at least – a child’s life. The child whose life is at stake doesn’t get an opinion unless doctors, parents and policymakers give them one. That is our duty as a civilised and compassionate society – to give a voice to those who are voiceless.

‘Until you have lived this hell, made this decision, held the tension of two terrible fates and had the courage to make a choice that will break you to pieces, you do not get to judge a woman or decide what is best for her.’

I have lived this hell. I have made this decision. It still breaks me every single day. I am not judging these women; I am judging the circumstances they are placed in, the information they are given, the pressure that is brought to bear, and the expectations forced upon them by the misguided and mis-prioritised society that we live in.

I wonder if Ms Kelly is confusing respect for these mothers – which I share unreservedly – with agreement with their decision. Just because the decision was difficult, just because it was made thoughtfully, carefully, heartbreakingly, soul-searchingly… doesn’t make it right. The solution to this terrible, terrible dilemma is not to make it more acceptable, easier, less traumatic to abort a baby; the solution is to work change in our society so that it is easier to bear that baby, to birth that baby and to bring that baby up, whatever its nature and its circumstances.

**As a courtesy, I offered this piece to Spinoff, the site on which Ms Kelly’s article was published. They declined to publish, saying they weren’t ‘that kind of website’. I think it’s sad that they aren’t the kind of website that would like to show two perspectives on this issue; that they are willing to publish an opinion piece about a certain group of women, but not willing to publish the thoughts of one of those women; that they are not keen to be involved in working the kind of change in society that I describe above. I hope other readers will be**

Misfit

Is it just me? Every time I hear or see the phrase ‘Dress like a detective’ (that’s every day this month then, as I’ve been doing the SWAN UK Instagram Challenge), I want to sing it to the tune of ‘Walk like an Egyptian’.

No? Just me then. That’s okay, I’m used to not fitting in.

Benjamin and I were in Ikea the other day buying a shower-curtain when a gorgeous, blonde little girl with thick glasses bounced up to us and said ‘What a beautiful baby, I wish we had one!’ I was a bit taken aback because although Benjamin was in his buggy he clearly isn’t a baby any more … and I couldn’t really imagine any ‘normal’ family wishing they had a child like Benjamin, at least not until they got to know him. Then the little girl’s mother joined us and said, ‘And look! He has a feeding tube just like you.’ I started to understand. The little’ girl’s eyes lit up. ‘Wow Mummy,’ she said, ‘That makes three of us. Me, this baby, and my teddy.’

I can’t really describe her delight at finding someone like her. (In the middle of Ikea, of all places). What must it be like to not know anyone ‘like you’ except your teddy? (And all credit to whoever gave that little girl a tube-feeding teddy). To not only not feel ‘normal’, but to not know anyone you could fit in with?

For a long time, Benjamin didn’t fit anywhere either. His physio said he had ‘symptoms of cerebral palsy’ – but not cerebral palsy. His neurologist said he would ‘likely have epilepsy’ – but he didn’t have epilepsy (he does now). His ophthalmologist said he was ‘probably visually impaired’ – but with someone as profoundly disabled as Benjamin he couldn’t actually tell. We didn’t know a child even remotely like Benjamin. I couldn’t find a website or a scientific paper that would tell me how he might develop, how much he would be able to do, how long he might live.

And if Benjamin didn’t fit, I didn’t fit either. Haunted by the innocent yet infernal question, ‘What’s wrong with him?’ I would shy away, mumble something, shuffle my feet, then berate myself for not giving Benjamin the answer he deserved. Having had some success as a researcher in a past life, I turned Benjamin into my latest research project, scouring the internet for matching patterns of symptoms, following citation trails back through obscure journals. Only to find, not only that he didn’t fit, but that I felt like a failure.

In fact, the only place we totally ‘fit’ is SWAN UK (Syndromes Without a Name). We fit here, because everyone is a misfit. All 2,000 families of us. All different, all undiagnosed (or once undiagnosed, or diagnosed with something so rare it might as well be undiagnosed). Finding SWAN UK was, at first, like that little girl finding Benjamin in Ikea. A sudden realisation that we were not the only ones. Over the years since, that sudden realisation has developed into a warm glow of acceptance. A knowledge that whatever hurdle we face, whatever question we have, another SWAN has probably been there already.

Two thousand misfit families finding where they fit is great, it’s fantastic. I am so glad we’re one of them. But – here’s the amazing bit – 6,000 new undiagnosed children are born every year in the UK alone! That’s an awful lot of misfit children and families that don’t have anywhere to fit. That’s an awful lot of mums dancing alone in their kitchens to The Bangles and not knowing that thousands of other mums are dancing along too (or is it still just me?).

That’s why – this Undiagnosed Children’s Day (Friday 28th April 2017) – SWAN UK is asking everyone to become a detective for the day. Help us find the thousands of other misfits out there. Help SWAN UK achieve its ambition of doubling its membership this year. You can help by sharing this post. You can help by tweeting with the hashtag #undiagnosed. You can help by starting a conversation about Undiagnosed Children’s Day. You can (if you like) help by dressing up like a detective (or an Egyptian) and feeling, for yourself, like a total misfit for the day. If you find a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). If you can’t do any of these things, you can help by donating a small amount to SWAN UK (just text SWAN11 £3 (or any amount up to £10) to 70070). Thank you.

SWAN UK isn’t the solution to all our problems. We’re still no closer to finding the cause of Benjamin’s condition. We’re still never going to be a ‘normal’ family. I’m still an angry old woman who shouts at people parked in disabled bays without a blue badge. I’m still an embarrassment to my children as I dance around the kitchen… but at least I know there’s another mum somewhere doing the same … isn’t there? Isn’t there?

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My daughter took this photo. Unfortunately it captures me perfectly.