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.

My second family

I don’t know about you, but I’m secretly glad the school holidays are over. Not because I don’t love being with my kids (honest!). And certainly not because I don’t love the occasional lie-ins, opportunistic ice creams, lazy days in the garden and not having to make packed lunches (the smell of Branston Pickle just seems to linger on my fingers all day…). But because I miss my mum friends.

In the holidays, it’s not just school that stops, it’s all the associated activities too. It’s the special needs kids’ group on a Friday morning. It’s a chinwag with the other mums during ballet class or swimming lessons. It’s a smile (and maybe even a hug) at the school gate. With no family nearby, during the holidays I really can go a whole day without having an adult conversation.

My husband is brilliant. He’s my life partner, my biggest helper and best friend. He’s great at fixing things. But he’s not great at feelings. By which I mean, he responds in a perfectly sensible way when I voice my feelings, just not in the way that I want him to. By which I mean, he’s a typical bloke and I’m a typical woman. For feelings, I need my mum friends.

Thank God, then, for SWAN. My second family. SWAN (Syndromes Without A Name) UK is not just a term-time organisation. It’s not just a nine-to-five organisation. It’s a support and a lifeline 24/7, 365 days a year.

Most of SWAN’s members I have never met, am never likely to meet. (One or two I have found do live near us and it has been amazing to meet them and chat like old friends, to get local advice from parents further down this crazy path we’re treading. I treasure their friendship especially). Yet, in a world where mums (and dads) are increasingly isolated, and special needs mums especially so, I really do feel like these virtual strangers-who became acquaintances-who became Facebook friends-who became real friends, have become family. I look forward to the ‘ping’ of a message from them or the ‘bzzz’ of a new post on the secret SWAN group. We share each other’s problems and successes, pain and joy. We egg each other on in wild (half serious) plans to run away to a private island with suitcases of chocolate and gin. When one of us is hurting, genuinely, we all hurt.

My head is full of SWAN stories. Happy stories, sad stories, heart-breaking stories. Stories of love, and loss, of waiting and fearing and fighting and celebrating each and every tiny inchstone our incredible children achieve. Of parents pushed to the brink and sometimes beyond. My heart is burned with images of SWAN children and families. Children smiling, children in hospital. Parents battling and parents buckling. Siblings sharing, families surviving. All people of inspiring strength and beauty. Often when I get a moment to think – perhaps when I’m driving, or when I’m supposed to be writing – I find myself thinking of those SWAN families who are going through tough times, reliving their stories in my head, maybe saying a little prayer that they find some relief.

Haven’t I got enough to worry about with my own family, without getting involved in the cares and concerns of all these other families as well? Absolutely not: because sharing their struggles gives me some much-needed perspective on my own worries, because sharing their fears lets me know that I am not alone, and because sharing and celebrating their successes gives us all a massive boost!

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Us SWAN mums (and SWAN dads – they may be fewer but they are hugely valued), we come from different ends of the country, different cultures, have different political affiliations, religious beliefs, parenting styles and aspirations. Even our SWAN children – the thing that we have in common – themselves may have nothing in common! (Although sometimes it’s tantalising to catch a glimpse of Benjamin in another child and think, just maybe, there’s a hint at an answer there). Perhaps it’s the lack of a shared experience that makes us feel such a, well, such a shared experience. Unlike the parents of children with, say Downs Syndrome, or ASD, or Cerebral Palsy, we’re not lumped together and assumed to have an instant bond. We came together and we built a bond.

If you are the parent of an undiagnosed child, this Friday, Undiagnosed Children’s Day is a great time to come and join us. If you know someone who is the parent of an undiagnosed child, please share this post with them. I’d love to hold your SWAN story in my heart too.

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**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 22: Family), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

Medicine

I thought that schools were getting more secular these days … until every morning of the Easter holidays being woken by my five-year old plaintively asking, ‘Mummy, why did Jesus have to die?’

‘Why do you ask that darling?’ ‘That’s what it said on the Whiteboard.’ The Whiteboard (capital W intentional) seems to be a modern-day oracle. So every morning this week we’ve fished out the Usborne First Bible and read through from the Last Supper to the Crucifixion, Resurrection, Ascension and right through to Pentecost and the coming of the Spirit before she’s happy. Happy that there’s a happy ending. Happy that everything has a reason.

Except, not everything has a reason, a happy ending, or an answer.

It can’t be long now before she moves on from ‘Why did Jesus have to die?’ to ‘Why is Benjamin disabled?’ And there neither my faith nor my science can help her.

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Guinea-pig therapy

April 14th’s theme in the SWAN UK Instagram Photo Challenge is ‘medicine’.

Medicine has done a lot for us, for Benjamin. It has shown us through MRI scans where his brain is malformed. It feeds him when he cannot feed himself. It soothes his tight muscles, prevents his seizures, minimises his reflux, clears his chest and reduces the number of bacterial infections he gets. When he is really poorly, medicine breathes for him. Without medicine, Benjamin undoubtedly would not be here. But medicine does not always have the answers. That’s what unites the members of SWAN (Syndromes Without a Name) UK: for us, medicine does not have all the answers.

Medicine ˈmɛds(ə)n,ˈmɛdɪsɪn/ noun. The science or practice of the diagnosis, treatment, and prevention of disease.

For SWAN children, medicine cannot, in fact, diagnose, treat, or prevent Benjamin’s disease. It cannot answer the question of why he is how he is. Before he was born, it could not tell us whether he would live or die, whether he would suffer or thrive. It still cannot tell us how his disease might progress or how long he will survive.

A couple of years ago, a super-intelligent, professorial geneticist told us he would pull out all the stops and find the genetic cause for Benjamin’s condition. ‘Within six months,’ he predicted. So that we would know more about his prognosis. So that we could estimate how long we might have with him. So we could make an informed decision as to whether to have another child (good job we didn’t wait around for that one). We’re on the DDD (Deciphering Developmental Delay) study. We might soon be put on the ‘100,000 Genomes Project’. I can google lists of symptoms all day long and usually get either ‘we found 4,652 conditions featuring all those symptoms’ or ‘we found 0 conditions featuring all those symptoms’. Both of which are about equally useful really.

Will medicine (or Google) ever provide an answer? Who knows? The DDD study is now printing out results letters daily. A third of those letters contain a probable diagnosis; two-thirds say they have found nothing at all.

When Jackie asks me ‘Why did Jesus have to die?’ I have to admit I skirt around the answer. I don’t think she’s ready to know that we are all sinners, the meaning of atonement and the story of ‘the fall’. But I can skip to the ending and show her the empty tomb, the risen Lord, Easter bunnies and chocolate eggs.

When Jackie asks me ‘Why is Benjamin disabled?’ what will I say? When the box on the DLA form says ‘diagnosis,’ what should I say? When the stranger in the supermarket asks ‘What’s wrong with him?’ What do I say? Thanks to SWAN UK, I know what to say, because when medicine doesn’t have the answers, often SWAN UK does. Through its community of parents who have been there before, SWAN provides the answers and more.

When Jackie asks me ‘Why is Benjamin disabled?’ I can say ‘Not everybody’s genes are the same. Some people develop differently to others. Disabled is not less, it’s just different. Undiagnosed is not less, it’s special.’

When the box on the DLA form says ‘diagnosis’ I will attach a two-page document listing Benjamin’s symptoms, presentation, and the studies that he is on. I will not let ‘undiagnosed’ stand in the way of him getting the help to which he is entitled.

And when the stranger in the supermarket asks ‘What’s wrong with him?’ I will say ‘Nothing. He’s a SWAN. He’s a medical mystery. He’s my miracle. He’s perfect.’

copyright Mat Fascione

© Mat Fascione. Licensed for reuse.

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 14), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

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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That was then and this is now

One crisp morning when Benjamin was in the Sick Kids I popped out to the corner shop for a sausage roll and a breath of fresh air (shocking, I know, but in my defence Benjamin was asleep and there are only so many egg sandwiches from the WRVS café one can eat). I passed a ground floor flat in one of those lovely Victorian sandstone tenements that characterise Edinburgh’s Marchmont area, with its big sash windows wide open. Music and smoke drifted out and I glimpsed a couple sitting there in their pyjamas, drinking coffee, I imagine easing themselves through the morning hangover. Bloody students. I thought. They’ll get a shock when they enter the real world. For a moment, a part of me wished I could go back to whiling away a weekday morning by a sunny window listening to obscure bands with a cigarette for breakfast.

I shouldn’t begrudge them. Fifteen years ago I was them. I’ve had my turn (all seven years of it) of drinking and dancing, smoking and shagging, of cheesy clubs and late-night lock-ins, stealing traffic cones and setting the world to rights; of trying to find someone, and trying to find myself.

Then, I was scooting around town on my little red motorbike, thinking I was the coolest girl in town.

Now, I’m chugging up and down the A1 in my big red MPV, strewn with used suction catheters, soggy biscuits and baby wipes.

Then, I was up all night climbing scaffolding and dancing to Steps (Oh, the shame).

Now, I’m up all night administering Calpol and cuddles (and occasionally dancing to Steps. Thanks, Radio 2).

Then, I was walking out of my room barefoot in the night and stepping on a slug.

Now, I walk out of my room barefoot in the night and step on a Lego brick.

Then, I was waking up fully clothed in somebody else’s bathtub.

Now, I wake up next to the four people that I love most in the world.

Then, I was researching the genetics of the plant kingdom in the big old musty-smelling library where you still had to complete a paper slip to get books up from the underground stacks.

Now, I am researching rare genetic disorders using Google (and grateful that I did take in something of my genetics courses along the way).

Then, I was slipping and sliding into anorexia because I thought looking skinny and fragile would make people love me.

Now, I am proud of the fact that my body has carried, birthed and fed three babies and that my tummy and boobs are evidence of that.

Then, I was drinking strong coffee just to get through the day until I could have a beer.

Actually, I’m still drinking strong coffee just to get through the day until I can have a beer…

Then, I was campaigning against tuition fees because all my friends were going.

Now, I am campaigning for disabled rights and against our impacts on the environment, because I want my children to live in a better world than this one.

Many things have changed; some things haven’t. I’m still me; still the sum of those experiences and all the things I’ve experienced before and after. I’m still learning, just now I’m learning on the job. I like to think each of those things has prepared me in some way for the most important role I’ll ever have, as Jackie, Benjamin and Caitlin’s mum. There’s still nothing wrong with having a few glasses of wine and putting the world to rights every now and then; it’s even better if you can get up the next morning and do a tiny thing that does make it better, for them.

Then, I was desperately trying to find my place in the world.

Now, I’ve found my place and it’s right here.

 

 

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 5 – My morning routine), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**