Don’t fight it

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

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

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Star of the week for super-switching!

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

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

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

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

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

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My own little pride of #ROARsome SWAN lions

#UCD2019 #ROARsome

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

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Graduation Day

Since when did nursery graduations become a thing? I’m sure I never had one, but last year my eldest daughter had two, complete with ribbon-tied certificates, gowns, mortar boards (long relegated to the bottom of the dressing-up box), and the obligatory cake.

Lovely as they were, I couldn’t help thinking this was all a little bit contrived. Yes, it was nice to mark the end of one stage of their life and the beginning of the next, but these smiling, bouncing, excited youngsters weren’t moving on through any merit other than having achieved a certain age. Yes, my daughter had done a lot, grown a lot, developed a lot, and learned a lot at both her nurseries, in no small part thanks to the wonderfully dedicated and inspired staff, but she hadn’t finished anything – she was only just beginning. We got some nice photos, ate the cake, and moved on.

With Benjamin, however, graduation seems utterly fitting. The two years he’s spent in the Green Room are laden with real achievements to celebrate: holding his head up; looking to both sides; expressing likes and dislikes; anticipating; recognising signs; choosing activities; making music; making friends. Tiny steps that accumulate slowly but surely. Graduation allows us to look back and see just how far he’s come.

Benjamin certainly perfected the art of sleeping through anything that doesn’t interest him

Unlike his neurotypical sister, Benjamin’s achievements haven’t all been fun. The children in the Green Room have worked hard: walking and talking don’t come easy to them. Smiling, turning their heads, focusing their eyes are real challenges to some of them. Benjamin is exhausted at the end of each and every day (if not by lunchtime). Graduation is a chance to show him how proud we are of the effort he’s put in.

With a fragile, life-limited child, we never know if the current school year might be his last. He can go downhill so quickly we don’t know if each day might be his last. Our opportunities to make special memories are finite. Graduation is a precious source of photos and thoughts to cherish.

Benjamin, like many children with additional needs, goes to nursery (and will go to school) on the other side of the county. So I don’t see his teachers every day; I send him off in a taxi with his clinical support worker, and get a written report back on his return. I don’t see him interacting with other students; I rarely meet the other parents of children in his class. Graduation and other formal events are vital opportunities to meet Benjamin’s classmates (including his adorable best friend), to crystallize friendships with other parents with whom we actually share a great deal, to see the environment in which our son is being nurtured, and to meet with the people who care for, teach, inspire and monitor my little boy’s progress.

And what incredible people they are! Graduation Day is an (inadequate) opportunity to thank them for all they have done for Benjamin and for us over the past two years. These are not just teachers. They are carers, nurses, and friends, to Benjamin and to me. Theirs is not just a job but truly a vocation; they couldn’t do it otherwise. I trust them with my precious boy and they repay that trust a thousand times. Teaching and caring for children like Benjy is physically, mentally, and emotionally exhausting; saying goodbye to them is a wrench. On Graduation Day, we were all smiling through tears.

Despite their totally hands-on job, Benjamin’s teachers had somehow had time to make him a certificate and a book of hilariously-annotated photos of his time at nursery. There were presents and a video slideshow. There was cake and much-needed coffee. Graduation Day was a chance to relax, in the busy and stressful world of special needs parenting, to share a cuppa and a laugh with people who ‘just get it.’

It’s not just Benjamin who’s grown during his two years in the Green Room. I too have learned a lot. I’ve learned who to trust, when to ask for help, how to let go (to some extent), and when and how to fight like only a mama bear can. Graduation was a chance to reflect on how far we’ve all come over the past couple of years.

For a boy whose prenatal prediction was ‘incompatible with life,’ Benjamin continues to exceed expectations and defy predictions. For a child who was unlikely to start nursery, let alone finish it, Benjamin has beaten the odds. He’s passed huge milestones and, with the help of the Green Room staff, made irreplaceable memories. He might not have worn a mortarboard, but he’s built a legion of admirers who would in any case just have taken it off to stroke his hair. He’s a worthy graduate of the Green Room. Bring on Primary 1 (and don’t worry ladies, we’ll be popping back to nursery for cuddles very soon).

Can I have a wee rest over the holidays please?

Postcode Lottery

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

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

Comfy in his new buggy

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

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

Expert physio

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

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

Why does it have to be like this?

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

A circle of reusable nappies in a range of pastel shades

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

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

Lottery tickets, a pen, Euro notes and coins

What a difference a drug makes

I’ve often joked that Benjamin is my easiest child. At least, alongside a five-year-old who will burst into tears if you suggest she watches CBeebies instead of Youtube (or, God forbid, actually turn the TV off), and a one-year-old who will literally climb the furniture to get at anything she shouldn’t have.

He doesn’t answer back. He doesn’t scribble in Sharpie all over the sofa, or helpfully make a trail of wood shavings from the guinea-pigs’ hutch to the kitchen. In fact a lot of the time, day or night, he’s barely awake…

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‘Just resting my eyes’

Maybe he exhausts himself working against his dystonic muscles? Maybe he’s out of sync, and waking lots during the night? Maybe he’s not really sleeping, he’s just pretending so he doesn’t have to do anything he doesn’t want to? He certainly seems to have a stubborn streak (no idea where he gets that from). No matter how much you try to wake him up, he just won’t have it. His heart rate drops and his temperature with it. He’ll sleep for 48 hours, wake up for an afternoon, then doze off again before bed-time. Keeping him warm with blankets, hot water bottles, body heat or whacking the heating up to max helps a little. Nothing seems to stir him.

Well, change is in the air – or in a little packet of pills. One simple drug has made him into a different boy! Based on some slightly anomalous blood results during previous hospital admissions (par for the course with Benjamin, who has never had a normal result in his life), a couple of months ago we were referred to yet another team (on top of neurology, respiratory, gastrointestinal, ENT, haematology, immunology, and the enigmatic ‘medics’): endocrine. The hormone doctors. They did several more blood tests and – surprise surprise – most of Benjamin’s results came back ‘borderline.’

One of the tests that came back borderline was a marker of the functioning of his thyroid gland. The thyroid produces hormones that, among other things, increase the metabolic rate, speed up the heart, increase body temperature, and regulate sleep.

So, just as an experiment, Benjamin has been prescribed a small daily dose of one of these hormones – thyroxine. And – once we’d explored with the gastro team how exactly to give the tablet through a feeding tube (guess what, they’ve never had a child like Benjamin needing this drug before… ) – the results have been astounding! His heart rate is no longer clinically low. His temperature is practically normal (as we come into winter that’s a big worry off my mind). And he is awake! He now maintains a relatively regular sleep cycle – he sleeps at night, has a nap around the middle of the day, and a lot of the rest of the time he is awake!

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‘Morning everyone!’

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‘Just because I’m awake doesn’t mean I have to be happy about it’

Crucially, being awake means Benjamin is aware of what is going on around him. He can observe, interact, and learn. His latest report from preschool reads: “What a difference in Benjamin this term! Benjamin … enjoys play experiences and interactions with his peers … has been showing clear signs of engaging more with those around him. He appears much more alert and aware.” And, as they continue, “When well and alert, Benjamin can explore cause and effect. There is more body language and less passive behaviour.” I’m sure we all often wish we had a few more hours in the day. Benjamin has literally gained a few more hours every day, thanks to one tiny tablet, and with pretty minimal side effects (just don’t mention the nappies).

And being more awake means he’s (ever so slightly) more mobile, more able to clear his secretions, more able to keep his feed moving down in the right direction. This is one of a number of small changes – regular chest physio, prophylatic antibiotics, the switch to a G-J tube which has dramatically reduced his reflux and consequent aspiration of feed into his lungs – which have helped keep him out of hospital (touch wood) over the summer. Now we just have to see if they will be able to hold firm against winter’s onslaught of bugs (touch more wood… can I get some more wood from somewhere?).

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Thank goodness for Shane the log-man

He’s still my cuddly, snuggly boy, but now we also get to see his beautiful brown eyes! We often even get a wave and a smile. Yes, he’s still tired and grumpy by the end of the day (show me a preschooler that isn’t. Or preferably a five-year-old, an eighteen-month-old and a husband). The drug deemed ‘worth a try’ has turned out to be the drug that’s making all the difference, not just to Benjamin’s health, but to his development and enjoyment of life.

 

Five things I’d change

This post was written for the #SEND30daychallenge, day 7: ‘Five things you’d change.’ We are so fortunate to live in Scotland, where there are really very few things that need to be changed so that Benjamin, and children like him, can live a safe, healthy, and happy life for as long as their biology and neurology allows them. Benjamin has many of the things that any child has a right to: shelter, food, water, sleep, love, healthcare, an education. He has these in abundance. But there are still things that Benjamin misses out on due to his special needs. Some of these are already changing; some of them need to change much faster. Here are the five things I would change for Benjamin at the moment:

Freedom from infection. Benjamin’s body – in particular his brain, stomach and lungs – is not as good at fighting infection as other children’s. If he gets a fever, it might cause a life-threatening seizure. If he gets a stomach bug, it can cause his entire digestive system to shut down and his pancreas and bowel to become inflamed. If he gets a cold, he frequently needs to be given oxygen to support his lungs. Any minor illness can put him in hospital for anything from one night to several weeks. Yet, still in this country parents flout the 48 hour rule that is designed to stop stomach bugs from spreading. Still, parents treat chickenpox as a minor illness. Still, people refuse to vaccinate their children, increasing the reservoir of infectious diseases to which Benjamin is subjected. If I could keep Benjamin in a bubble, I would. But that would not be beneficial to his growth and development, so I rely on other parents being responsible, thinking of others, putting childrens’ health above their convenience. The first thing I would change would be the culture that makes this so hard to do.

The ability to just pitch up and go on public transport. We have our car, which is great, but with a really fast rail link between us and our nearest city, it would be lovely to just be able, spontaneously, to hop on a train and go in to Edinburgh for a spot of shopping, to the movies, out to lunch, with Benjamin. Instead, we have to decide which trains we will be travelling there and back on – so no last minute decision to stay late – and book assistance and a ramp 24 hours in advance. So much for spontaneity! With trams and some buses wheelchair-accessible without assistance, it would be brilliant if our railways could move in that direction too.

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Even this little train was more accessible than the East Coast mainline

Privacy and dignity when going to the toilet. Benjamin is nearly four years old, and weighs twenty kilos. He is still in nappies, and will be for the rest of his life. He is fast getting towards the limit of what a standard baby changing table will take, if not in weight then definitely in length. We are also getting towards the limit of what our backs can safely lift out of a wheelchair and onto the floor of an ‘accessible’ toilet – if we really wanted our beautiful boy to be laid on a place where people stand to pee, a place often wet, a place with too little space to kneel beside him, a place where most people wouldn’t even put their handbag! Yet few (less than a thousand in the UK) large venues, such as shopping centres, transport hubs, and cinema complexes, have something as simple as a changing place (a toilet with a bench and hoist), so we will soon be unable to use them with Benjamin. Our alternatives are becoming limited to changing him on the floor, changing him in the boot of the car, or allowing him to sit in his own waste. If we want Benjamin to have privacy and dignity, he’ll have to stay at home. In the twenty-first century, that can’t be right, can it? If you’d also like to see this change, please sign the petition here.

The chance to play with other children during the holidays. Benjamin loves going to his special needs nursery during term-time. It’s a brilliant environment, the staff are amazing, and he has friends there. During the holidays, all that is denied to him because the one-to-one health provision that he needs in order to attend nursery isn’t available. He’s stuck at home with me, which is boring for him and guilt-inducing for me! Across the country, the lack of suitable holiday provision for children with complex needs, or profound and multiple learning difficulties (PMLD) is sadly consistent. Children lose their stimulation and impetus, their friends and fun, parents could lose their jobs. Equality shouldn’t stop during the holidays.

Access to the natural environment. Benjamin loves to watch the sunlight flickering through the leaves in a woodland. He loves to feel the sea breeze on his face. We are fortunate to live near several beautiful beaches – but sadly very few are accessible to Benjamin (although there are now a couple of brilliant beach wheelchair schemes at the larger resorts). There are steep steps, narrow bridges, soft sand, and overgrown paths. I know we can’t expect to be able to take him everywhere, but I would one day love to be able to take him to the beach.

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Maybe better wait until low tide though…

These are just a few of the things I would like to change – and that I think are changeable. The eagle-eyed amongst you will have noticed that I skipped the #SEND30DayChallenge Day 6: ‘A letter to the Prime Minister.’ I’m sorry, Ms May, but frankly, yesterday I was stumped. I had no confidence that you would be interested, no idea what would catch your interest, no concept of how to make you care. I feel we have more hope of achieving things at local level, through local politicians, lobbying nearby businesses, engaging local people and using social media. With my five things, I feel we have a real chance of change, from the grassroots up.

What would you add? #send30daychallenge

Ten things you may not know about SEN parents

This post was written for the #SEND30daychallenge, day 2: ‘Ten things you don’t know about…’ I’ve changed it to ‘Ten things you may not know about…’ because I’m sure some of my readers – especially those who are SEN parent themselves – will know every one of them! What would you add?

  1. We are brave. This might be different for everyone, but I hate making phone calls – in fact, unless it’s to my mum, the thought of phoning anyone terrifies me. But that’s a fear I face head-on every day: scheduling therapy sessions, rescheduling outpatient appointments, ordering prescriptions, organising respite, chasing transport providers, … Not to mention that we face life-and-death decisions head on without flinching (at least until after its all over).
  2. We are warriors (or at least terriers). We will stop at nothing to get our children what they need. Healthcare, education, support, a diagnosis, a pair of boots that fit, a medication that works, toilets they can use, playschemes they can access. We will keep on fighting, bruised though we are, because the fights never end. And because we’ve got in the habit, we are often found fighting other people’s battles as well. If you’ve got a battle needs fighting, ask a special needs mum.
  3. We live in a state of perpetual organised chaos (or should that be chaotic organisation?). Yes, I have a row of files labelled ‘medical,’ ‘education,’ ‘direct payments,’ ‘charities,’ ‘equipment,’ etc., but I also have a pile of papers several feet high waiting to be filed in them. Yes, I have a diary, and a calendar, and a to-do list on my phone, and a paper to-do list, and a list in my head, but sometimes things don’t get done because they are on the wrong list, and sometimes things don’t get done because there simply isn’t enough time (see also point #9).
  4. We are physically strong. Because we have to be. Benjamin is 19 kilos and he’s not getting any lighter. His buggy weighs a similar amount and needs humping in and out of the car boot daily. Chairs, benches, suction machines, crates of specialist milk, … who needs a gym?
  5. We spend a lot of time on Facebook. But we’re not (always) watching videos of cats rollerskating or uploading our holiday snaps. Social media is an amazing support network and a source of information. Some of our best friends we may never have met, but we are there for each other across the ether. So if we’re not asking a question or ‘venting’ about how crap the system is, we’re probably answering a question someone else has posed, or giving a virtual hug at a time they need it most.
  6. We feel guilty all the time. Guilty that we’re not doing enough therapy with our SEN child. Guilty that we’re not making home-cooked meals every night. Guilty that we’re not giving our other kids enough attention. Guilty that we’re spending too much time on Facebook. Guilty that we’re wasting time feeling guilty…
  7. We have wet wipes and muslins in every room of the house. Nappy explosion in the bedroom? Check. Bile-bag leakage on the sofa? Check. Food-throwing meltdown in the kitchen? Check. I should have got shares in Pampers.
  8. We live on coffee, chocolate, and wine (or gin). Every time anyone comes to my house, be they friend or therapist, I ask them if they would like a coffee. Please, please say yes – then I can have one too.
  9. We spend less time on self-care than we should (see also #8). We eat on the go. We sleep with one eye open. We don’t do enough cardio (unless you count running upstairs to get another clean nappy), yoga or mindfulness. My bras have lost their elastic, my hands are cracked and my toenails need cutting. Last week I got my hair cut for the first time since Caitlin was born (she’s eighteen months old).
  10. We slip up sometimesoften: I forget when it’s World Book Day at school, I forget to take a snack when I pick the girls up from nursery, I forget to brush their teeth, I go out without Benjy’s rescue medication, I go out without my keys, I go out with my dress tucked into my pants (if this is the case, please do tell me)..

    I’m sure I left my child around here somewhere…

  11. We know our children better than anyone. The medics might be able to tell from his sats and his blood tests that he’s ill, but I could tell 24 hrs earlier from his demeanour. I know his normal colour, his normal temperature, his normal muscle tone, his normal eye movements… I can recite his daily medications and feed regime in my sleep. I can recall all his hospital admissions quicker than you can find them in his file. We are grateful to the doctors that listen to us. We trust the ones that ask us questions. We remember the ones that ignore us.
  12. As you can see from the above, we are a mass of contradictions, but…
  13. … we are people too. We’re not superwomen. We’re not scary. We might have less conversation-starters about Breaking Bad or Love Island (are those even things people watch? I haven’t a clue) and more about bowel movements and medication regimes, but we’d still love to chat – even if it’s just about the weather.
  14. We can’t count.
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Wet wipe emergency!

#send30daychallenge

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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