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

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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

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**

Benjamin doesn’t tick boxes

An open letter to the Head of Education at East Lothian Council

Dear Ms Robertson,

Not having a tracheostomy is a good thing, isn’t it? Not being on TPN, not needing daily IVs, that’s good, isn’t it? Not if it means you can’t access the support you need.

I am sending you an open letter, because your response to my previous, urgent email about my son’s education was met – more than a week later – with a dismissive, incorrectly addressed, response from a ‘service administrator’ advising that it had been forwarded to ‘appropriate personnel who will respond in due course.’

If this administrator had actually read my letter, she would have seen that I am not ‘Mr Davey’ but Dr Davey, Benjamin’s mother (even ‘Mrs’ would have done), and that this matter requires a response not ‘in due course’ but urgently, and not by ‘appropriate personnel’ but by someone at the very highest level who has the ability and resources to make things happen, and make things happen fast.

This is Benjamin. Benjamin is undiagnosed. He has multiple, complex, interrelating conditions affecting many organs and systems of his body, but we don’t know why. When something is wrong, it is difficult to tell which part went wrong first. Chest or stomach? Breathing issues or muscle tone or a seizure?

Benjamin is intractable. Benjamin smiles when he is happy or with people that he loves. Benjamin also smiles when he is in pain. Benjamin tenses up when he is trying to reach for something, and also when he is trying to pull away, and when he is distressed.

When Benjamin is well, he’s very well. On a good day he only needs his regular medications, four times a day, his inhaler and a saline nebuliser once a day, chest physio and suctioning twice a day, a few checks of his gastrostomy and his temperature and you’re done! When he’s poorly, he can be very poorly. He may, within a couple of hours, become so dehydrated he needs IV fluids. He may produce so many thick secretions that he cannot breathe. He may have a tonic-clonic seizure that is resistant to rescue medication and lasts up to four hours. His temperature may drop so low it cannot be recorded with a regular thermometer. His heart rate can drop to 30 or rise to 180 beats per minute. His muscles can become so tense it is impossible to bend him into a sitting position. He can vomit fluorescent green slime out of his nose (Britain’s Got Talent, are you reading?). Benjamin can go downhill very rapidly and recover almost equally rapidly. Sometimes it is impossible to tell whether he is deteriorating or improving. Benjamin needs someone on hand, 24/7, who is able to respond to all these medical eventualities.

Benjamin doesn’t tick boxes. Benjamin doesn’t meet criteria. Especially when we don’t know what criteria he is being measured against. Especially when the ‘professional’ opinion is that he doesn’t even justify being tested against the criteria. Benjamin confuses panels and confounds ‘decision making tools.’

Benjamin, like all three year olds in Scotland, is entitled to 600 hours of funded early learning and childcare per year. Benjamin has a place at a fantastic special needs nursery, attached to the special needs school provision where he will hopefully eventually receive full-time education.

Benjamin loves nursery. He loves his teachers. He loves painting and baking, soft play and ‘body awareness’. He loves the sensory area and he loves when he gets a foot massage.

I love Benjamin’s nursery. But I don’t want to be there the entire time that he is there. Like other mums of three year olds in Scotland, I am entitled to 600 hours early learning and childcare for Benjamin per year to allow me to care for and spend time with my other children, to catch up on paperwork (oh, the paperwork), to catch up on laundry (oh, the laundry), to have a coffee, go for a pee, read a magazine, get my haircut. God forbid, I could even do my job.

But, since Benjamin started his three year provision in early January, I have had to accompany him to nursery because there is no-one there who can meet his medical needs. This was intended to be a temporary arrangement until either his nursery staff could be trained to meet his needs (voluntarily, because they are wonderful, caring people who will go beyond the requirements of their role as long as it is safe to do so), or until provision could be put in place for a medical professional to be with him at nursery. This would be a ‘reasonable adjustment’ as required under the Equalities Act to ensure that Benjamin can safely attend the education to which he is entitled.

As it transpires, Benjamin is too complex to be cared for by nursery staff. They are, after all, teachers, nursery nurses and classroom assistants. They are not medical professionals. (I am not a medical professional but, since having Benjamin, I might as well be). They cannot be expected to, should not be expected to, take decisions about Benjamin’s highly complex, variable, unpredictable and rapidly-changing health needs.

Benjamin’s teachers can be trained to do chest physio but not how to tell when chest physio might make his wheezing worse.

Benjamin’s teachers can be trained how to suction him but not how to tell when he needs suction or when it would cause too much trauma.

Benjamin’s teachers can be trained to aspirate his gastrostomy but not when that is necessary, how to evaluate the contents of his stomach, when to discard them, when to stop his feed, when to switch him to a different feed regime, when to worry, or when to take him to hospital.

Benjamin’s teachers can be trained to administer his feeds but not to evaluate what rate is appropriate for his stomach at any given time.

Benjamin’s teachers can be trained to clean up if he vomits but not how to tell if some vomit has got into his lungs, if he is getting dangerously dehydrated, whether he needs to go home on dioralyte or go immediately onto IV fluids.

Benjamin’s teachers can be trained to administer his medications but not to determine when he needs a higher dose than usual.

If Benjamin’s teachers make the wrong decision, because they are not medical professionals, he could end up in A&E wasting everyone’s time, or he could end up gravely ill. It wouldn’t be their fault. It shouldn’t be their responsibility.

And yet, because Benjamin doesn’t have a tracheostomy, because he is not on a ventilator, or on TPN or regular IVs, nobody will assess him for the Lothian Exceptional Needs Service for Children with Exceptional Health Care Needs (LENS) scheme, despite that he fulfils many of its ‘issues relating to need’ including needing ‘sustained medical support … seven days per week,’ requiring ‘professional trained intervention on a regular basis or in response to an acute incident in order to prevent acute hospital admissions,’ demanding ‘a degree of complex problem solving, and revision of the child’s care plan, on an hour by hour or day by day basis,’ and an inability or lack of competence of carers to meet these needs.

Because no-one will even bother to assess Benjamin for the LENS scheme, he has been downgraded to the frankly mythical HESS (Healthcare and Education Support Service). Because no-one will supply us with a copy of the criteria for referral to HESS, we do not know what boxes he needs to tick. Because the member of staff responsible for making the referral has been slowly drip-feeding us the information we need to supply and the evidence that needs to be provided, rather than giving us a clear outline of the application requirements from the start, it has taken far longer than it should have to put all that evidence together, extending the process well beyond the end of last term and into the next. Because parents apparently have no input into this information, only ‘professionals,’ there is no one to complete the documentation: I, his parent, am the one taking care of him at nursery because there is no professional there trained to do that (Anyone else thinking Catch 22 here…?). Because East Lothian has never even signed up to the HESS scheme, there is no guarantee that Benjamin will get the support he needs through it, and in the meantime we are left waiting, hanging, clinging to the concept of a ‘decision making tool’ that we have never seen and know nothing about. From Christmas to Easter, and now into the summer term…

I know this isn’t your fault, Ms Robertson. If anything, it’s mine: fancy agreeing to go to nursery with Benjamin as a temporary measure until something more permanent was organised? How gullible was that? Of course, that removes any incentive for anything permanent to be organised! I know this isn’t your fault, Ms Robertson, but it is your responsibility, so that’s why I’m writing to you (again) now. I’m no longer prepared to give up my time and my family’s time to provide something that should be provided to Benjamin as a right. The buck stops with you and it stops now.

There are many possible solutions. You could answer – and even fast-track – my request for Benjamin to receive a Coordinated Support Plan. You could provide all special school provisions in East Lothian with a full-time school nurse. You could support Benjamin’s immediate referral to the LENS scheme. He cannot be the only child in the county who needs this kind of support? Even if he is the only one without a tracheostomy…

I don’t want to be one of those mothers. The difficult ones. The ones who kick up a fuss. The ones who go to their MP and MSP and write viral posts on Facebook and go to the press. I am nervous. I wonder, is it too early to protest? The HESS application is, after all, still ongoing. The school staff say they are drawing up a ‘timeline’. The nice lady at the council says she has sent some emails. But how long do we have to wait before we start working together on ‘Plan B’? Do I and the nursery actually have to call your bluff, refuse to provide essential medical support for Benjamin, in order for someone to take us seriously? Does it have to wait until my family is at crisis point?

I don’t want to be one of those mothers, but believe me, I will. If Benjamin does not tick your boxes, your boxes are the wrong shape. If Benjamin doesn’t meet your criteria, you need to rethink the criteria. If Benjamin doesn’t fit your ‘decision making tools’ then those tools are not fit for purpose. Maybe together we can make some better tools?

Yours,

Benjamin’s mum

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To those who make our lives difficult … and those who make them better

It has not been a great week. Friday night I finally worked out (with the help of a head-torch and strong stomach) what had been keeping my five-year-old (and therefore the rest of the family) awake for large proportions of the last couple of nights: threadworms. Cue a weekend of swallowing foul-tasting medicine (okay, banana-tasting, but I don’t like bananas so it tasted pretty foul to me), nail-cutting, disinfecting, hoovering, and washing every damn sheet, towel, and pair of pants in the house.

About six loads into the approximately twenty loads of washing that needed doing (why my husband needs to keep six pairs of jeans on the go at the same time is beyond me), the trusty washing machine gave its last gasp and went to Hotpoint heaven. Well, you have to laugh don’t you? Off to the shopping centre for a new washing machine and some more pants.

If we huddle together maybe she won’t wash us? (I did)

The day the new washing machine was delivered, which also happened to be the day the temperature went down to -1 degrees outside and it snowed a blizzard, and the day Benjamin was back home from respite, our central heating thermostat decided the washing machine was having far too much fun up there and headed off to join her. Cue another sleepless night waiting up for the British Gas man and making sure Benjamin was not alternately freezing to death or catching fire due to the slightly rickety electric heater we set up in his room.

Perhaps surprisingly to those who know me, I actually did manage to stay positive through these tribulations, despite a niggling sinus infection and a baby who still decides to feed for five hours a night, because I know they were really nobody’s fault and I could make a plan to resolve them. I always feel better if I have a plan.

What does upset me are the things that I have no control over but somebody else does. The things that just aren’t fair. The things where people just don’t think. The things that make our life – already stressful, exhausting and expensive – just that little bit more difficult. The things that, on a good day, I can shrug off, but on a bad day tip me over the edge.

The neighbour who consistently parks her car overlapping our disabled space, sometimes so close that I can’t even open the boot, let alone open it wide enough to get a wheelchair in.

The parents without blue badges who fill the disabled parking spaces next to my daughter’s nursery, and those who do the same at my son’s even though it has an SN nursery attached so clearly they are going to be needed.

The parents who think it’s okay to leave their towels and clothes ‘bagging’ the only disabled changing cubicle at our local swimming pool while they shower, so I have to wait with a dripping, freezing five-year-old, or leave Benjamin outside the cubicle blocking the gangway, or confront them and risk their (sometimes vitriolic and frankly foul-mouthed) wrath on their return from the shower.

The medical secretaries who repeatedly ignore and refuse to return my worried calls.

The paper-pushers who drip-feed us form after form over week after week, while they mark Benjamin up against their secret criteria to decide whether he is entitled to medical support to enable him even to attend the nursery placement to which he is legally entitled.

The last straw…

But these are minor niggles, really, compared to the worms, ohmygod the worms those that many SN parents (and carers) face. Parents who feel compelled to take horribly drastic measures because they see no other way to get their child the support that he needs. Parents who have to go to court to get the right school, the right house, or the right care for their child. Parents who need physical protection from their own children. Parents who risk losing their homes because they cannot work to pay the mortgage. Parents who aren’t believed that their child has needs because they behave perfectly at school but let all their emotions out at home. Parents who have been allocated respite but have no one to provide it; parents who desperately need respite but have been refused it. Parents who have to fight every step of the way just to ensure their child is healthy, happy and included and their family stays together and has the energy to fight another day. And these parents still put a brave face on it and support each other because that’s what we do.

And they are minor niggles because, for every one of the people who make our lives difficult, there is always at least one who makes it easier.

The washing-machine man who fitted our new machine with a cheery smile and a knowing nod. The boiler-man who came out in the middle of the night and returned the next day with a brand new, all-singing all-dancing internet-enabled thermostat. The friends who volunteer to hold (and jiggle) Caitlin while I get Jackie changed after her swimming lesson, so that I have one less child to keep an eye on. The neighbours who look out for us and invite us over for coffee. The agency carers who come in on their day off and spend time encouraging Caitlin to walk and listening to Jackie chatter as they take care of Benjamin’s needs. The lady at the council who actually listened to our problems, understood, and promised to do something about them. The hospice staff who arranged a photographer to take some family photos for us, and the photographer who refused to charge for them.

New washing machine (and expert washing machine selector)

So we’ve got through this week with our humour (if not our wallets) intact. With a few more grey hairs and bigger bags under the eyes. There is still enough in our lives to smile at and plenty to laugh at. Often it’s not about money and limited resources, it’s just about thoughtfulness, consideration and an inclusive attitude. Just don’t mention the worms.

Skills for my CV (not)

A few weeks ago my eldest starred in her first ballet show. It was an incredibly serious affair: no nail varnish, no dark coloured pants, hair must be secured in a proper bun, held in place with pins (not bobby pins) and a net to match the colour of the hair, all hair to be held back off the face with gel, no hairbands, clips, … Phew.

Thank goodness there was a rehearsal. Thank goodness for a YouTube video showing how to make a figure of eight out of a hairnet. Thank goodness I didn’t let my little girl down! I might not have passed with distinction, but I was happy with a grudging ‘that’ll do’ from the ballet teacher. Another skill to add to my repertoire, another skill that before I became a mummy I never imagined I’d have to master.

'Could do better...'

‘Could do better…’

In fact, after I passed my PhD and took my driving test I thought that would be it. I thought I’d never to take a test again. I had everything I needed on my CV.

And now, here I am again, hands shaking, while a community nurse ten years younger than me ticks off my competence in changing a gastrostomy button. If only she knew I had to use a car key last time… I am now trained and signed off to deliver gastrostomy feeds and medicines, to change and care for a mic-key button, to deliver oral and naso-pharyngeal suctioning.

I am trained to give physio and specialist chest physio, to use a PEP mask and an inhaler and administer a hypertonic saline nebuliser, to make up antibiotics, to give appropriate sensory and visual stimulation to aid Benjamin’s learning. I can work a sats monitor, a bath seat, a profiling bed, set up a sleep system and adjust a special needs buggy. I am learning on the job how to manually handle a 15 kg (and growing) weight, how to negotiate deals, how to manage agency carers, and how to make crucial medical decisions, sometimes every day.

Every new parent has to develop a whole new set of skills that would never make it on to anyone’s CV. Cutting tiny fingernails. Changing a dirty nappy with half a hand. Developing recipes that everyone will like and prevent scurvy. Finding the missing teacup from the Sylvanian family’s picnic before all hell breaks loose. Intercepting pieces of bread and empty yogurt pots as they are hurled across the kitchen. Often, simply getting everyone to where they have to be in the right clothes and with the right equipment and then getting back on time to pick them up again feels like some sort of game-show challenge.

Yet parenting a child with complex needs takes the job description up a whole new level. Special needs parents are, as the charity WellChild puts it, ‘#notanurse_but’. I don’t yet have to administer home IV’s or maintain a tracheostomy, but if I have to in the future, I’m ready. The more skilled I can become, the more we might be able to keep Benjamin at home and the less time he might have to spend in hospital. Every new skill I can learn, even if it goes nowhere near my CV, could make Benjamin’s life more comfortable and keep our family together that little bit longer. And frankly, nothing I’ve yet had to learn has been harder than putting a ballet bun on a four-year-old.

How come you never get my hair right then mum?

How come you never get my hair right then mum? I’m not auditioning for Jedward…

A world without…

A week ago I – along with at least 50% of people on my Twitter feed, it appears – watched Sally Phillips’ emotive documentary A World Without Downs?, exploring the possible outcomes of a new, non-invasive prenatal test (NIPT) for Downs Syndrome. The test allows risk-free, early prenatal diagnosis of almost 100% of Downs Syndrome babies. It is sadly no surprise that the vast majority of parents, who discover their unborn baby has Downs Syndrome, choose to abort. In countries where NIPT is already routine, that means 100% of Downs babies are ‘screened out.’ When the NIPT is introduced on the NHS, Downs could be eradicated in the UK as effectively as smallpox. A world without Downs is a very real possibility.

Although I have little experience of Downs Syndrome, the programme stirred up a host of not-so-deeply buried emotions. Because we also, thanks to non-invasive testing, were given the knowledge that our child, in utero, would be severely disabled. We were given the choice to ‘screen him out.’

second-scan-01

In our case, despite the prognosis that Benjamin would be much more severely disabled than most of the Downs community, we chose to continue the pregnancy. It was an unusual choice: a choice that at least some of the people Phillips so bravely interviewed would consider anathema. Yet, almost three years down the line, having out-survived the dire predictions made for him, I remain convinced that our choice was the right one, for Benjamin, for us, and for everyone.

In this respect, our experience mirrors Phillips’: the quality of Benjamin’s life has, so far, exceeded the prognosis; for Phillips the lived experience of Downs does not match the medical risks associated with having an extra copy of chromosome 21. Therefore, she argues, the medical facts alone should not be used to justify, promote or allow the termination of Downs pregnancies; the truth of the lives of the Downs community – their achievements, their integration, their quality of life – must also be considered.

However, while this argument may hold for her cherry-picked examples of high-achieving, articulate, much-loved people with Downs Syndrome, in other cases the worst predicted scenario may in fact come true (see, for example, this headline-hitting story from a couple of years ago). Nor may Phillips’ experience apply to the host of other, less cuddly, genetic conditions that we’ll be able to screen for over the next few years: conditions whose bearers may be less able, less sociable, less comfortable, in more pain, and requiring greater levels of intervention. This is not just about Downs! Downs is the thin end of the wedge, yes, but we need a much stronger, less subjective argument to avoid slipping faster and faster towards the eugenics of the thick end. I didn’t choose to keep Benjamin because I thought the doctors were wrong; I chose to keep him because I loved him even if they were right.

The fact is, as Phillips makes clear, choice is not always all it’s cracked up to be. In fact, choice without information is no choice at all. Parents are called upon to make a life or death choice, yet they are sometimes the least informed party. They have no medical background, no knowledge of what it is like to parent a disabled child in todays’ society, or of what it is like to be disabled. Caught in the moment, they cannot get their heads around hospices and trust funds, community healthcare and special schools, motability and carer’s allowance. They rely upon the medical profession, as their only point of contact, to provide all their information. With the clock ticking towards full term, they may be rushed into a decision before they can research it from all angles. A decision that – either way – they will live with for the rest of their lives.

Choice without information is no choice at all, says Phillips. But neither is choice without support. Because choice almost inevitably leads to hindsight, leads to ‘what if?,’ leads to guilt. The climate in which we made our choice left us (me) with a huge legacy of guilt.  Because although it was a joint choice – and to my dear husband I am hugely grateful that we made it together and bear joint responsibility – at the same time it was my choice. I was the one who had borne Benjamin for eight and a half months. I was the only one who knew him. It would be my body to birth him, dead or alive; my signature on the consent forms; my choice to condemn the rest of my family to a life they hadn’t planned or chosen.

I feel the guilt every time my husband has to take time off work to come to yet another multidisciplinary consultation. I feel guilty every time Jackie has to spend the afternoon colouring in, in A&E. I feel guilty for the weeks spent juggling home life with hospital. I feel guilty every time Benjamin is in pain. I feel guilty when we spend £750 on a new base for his wheelchair that could have gone on a new carpet for Jackie’s room. I feel guilty when we can’t climb a mountain together. I feel guilty when I spend the afternoon making purees for Benjamin instead of cupcakes with Jackie. I feel guilty when Caitlin needs a cuddle but Benjamin needs my immediate care.

Of course ‘mummy guilt’ or as Google insists on rephrasing it for me, ‘mommy guilt’ is far from my unique prerogative. Guilt for working, guilt for not working, guilt for letting them cry, guilt for spoiling them, guilt for using disposable nappies, guilt for formula-feeding, guilt for feeding them junk, letting them watch too much TV, spending too much time on your phone, not noticing when they smack another child in the head, not noticing when they get smacked in the head… But this guilt runs deeper. Whichever path they choose, parents like us make a life-or-death decision: to end a life, or to forever change the lives of those around them.

The brilliant, honest and thoughtful blogger Orange this way admitted in a post earlier this year that ‘I would have mistakenly and quite offensively believed that life with a disabled child would be tragic and terrifying, joyless, isolating and punishing, and that the hardships would far outweigh love.’ When Benjamin’s disabilities came to light, I felt the same, and those feelings were reiterated by the few people around us with whom we shared that nightmarish news. I felt we had to choose between a life of freedom without Benjamin or a life of hardship with him. Hardship not just for the mother, but the father, siblings and extended family too. In my journey with Benjamin I have come to know several parents who faced a similar choice at 12, 20, 30+ weeks pregnant. Some decided to terminate, some to continue. Our paths since that choice may have diverged but one thing we all share: the weight of guilt.

Don’t get me wrong. I don’t think we made the wrong decision, not at all. I don’t wish we had chosen to abort Benjamin. I don’t wish he had never been born or even never conceived. He is my Benjamin, my brave, beautiful, brown-eyed boy, and I love him with all my heart. But I do wish, with that same heart, that we hadn’t faced that choice.

I don’t blame the doctors, who were only doing their job, giving us the information they had and telling us the rights that we had. I don’t blame the midwife who sent me for that fateful 38-week scan. But I wish we hadn’t faced that choice.

The choice, the decision, and the guilt, threatened to drive a wedge through the heart of our family. Between myself and my husband; myself and my daughters, who will live a very different life to the one we planned for them; myself and the family members who weighed in with (well-meaning) advice and opinion. I wish we hadn’t faced that choice. And NIPT places such a choice in the hands of hundreds more parents, each year, in the UK alone.

I am not asking that we reverse or ignore the amazing advances that scientists and medics have worked so hard for. I am not arguing against screening. In the right hands, prenatal screening can provide valuable information. For Benjamin, it meant that the medical team were thoroughly prepared for his arrival and ready to hit the ground running. Not for us the months of fighting that so many SN parents face, to be taken seriously, and to get much needed treatment and support. From the very start we had nurses, paediatricians, dieticians, physiotherapists, palliative care specialists, neurologists, geneticists, and more, queuing up to see Benjamin and to help him be the best that he can be.

What I am asking for is a society that makes the choice less punishing; a society that doesn’t place parents between a rock and a hard place; that doesn’t make them choose between life for their unborn child and life chances for their other children. I’m asking for a society where life becomes the easy and obvious choice: a society of fairness, accessibility and tolerance.

And until we get that society, I am begging for support. Support to parents at the time of screening – provided not just by doctors but counsellors, peer supporters, palliative care specialists, social workers, family and friends. Non-judgemental, non-directed, support. Space to ask questions and have them answered; help with work, cooking, housework and childcare while they grapple with their choice. Reassurance that the choice they will make is the right one for them, and that no-one needs to feel guilty. And support afterwards, to heal the psychological scars that will inevitably left by such a choice, by simply being a normal, lay person thrown into making a life and death decision. One good place to start would be with more Diana Children’s Nurses, who were such a support to us while I was pregnant with Caitlin. If only they had been there during my pregnancy with Benjamin too.

If you haven’t already, I urge you to watch A World Without Downs? It raises important questions and starts an important debate. But it doesn’t go far enough. Pitting the ‘Downs community’ against – well, against whom? Scientists? Politicians? Doctors? Mothers? – in this way may in fact make it more acceptable to terminate pregnancies with worse prognoses. The fact is we are all a community, and all part of a continuum of humanity, all able and disabled in different ways. If we do begin to provide fuller information about life with genetic conditions, as Phillips hopes, are we then more justified in screening out the worst? And who chooses what constitutes ‘the worst’? Where do we, should we, draw the line between someone who is a valuable member of society and someone who is a drain on it? Who chooses who has a right to life? Should we outlaw the choice itself? Or should we build a society where life becomes the easier choice to make? And who will be there to pick up the pieces of those on whom that choice is placed, whatever they decide?