The last thing I want is respite

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

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

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

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

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

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

That’s what Rachel House provides.

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

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

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

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

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

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

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**

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.

Reference point

20170213_210941.jpgI popped a little note into my big daughter’s lunchbox for today, Valentine’s Day. Nothing elaborate; just to say I love her. I didn’t bother for my youngest daughter – she can’t read yet, and to be honest she’d probably just eat it. And Benjy, well Benjy will be with me all day anyway. I hope he knows that I love him. I think he knows.

It got me thinking that, at this moment in time, nobody loves my children more than I do. Their Daddy loves them just as much, but nobody loves them more than us. How could they? We – in our love for them and our love for each other – are their reference point for love. The yardstick against which every future love will be measured.

Their reference point for love. Just as my parents were for me. It was hard for me to understand, until I became a mum myself, just how much my mum must have loved me. Sitting up through the night when Jackie had chickenpox, helplessly wishing I could take away her pain, I remembered my mum doing the same with me – holding me, rocking, imploring me to squeeze her hands as hard as I could, as if I could transfer the pain on to her. My reference point for love.

I’m secure in my marriage because I know my husband loves me that much too. He’s already seen me through health and sickness, through living on opposite sides of the world, through typhoid fever and a motorbike crash, through life-and-death decisions and through childbirth and all that has followed; he loved me before and after and because and despite of all that. Some day my girls will grow up and, I hope, find someone who loves them as much as that, as much as I do. Who meets their reference point for love. But Benjy? He’ll never find someone else to love him like that.

Jackie says ‘I love you Mummy’ a lot. When she’s been naughty. When she’s tired and snuggly. When I’m not paying her enough attention. Caitlin’s just starting to get cuddly, to hold up her chubby little arms to be picked up, to snuggle in to your shoulder with her curly head. But Benjy? He’ll never say ‘I love you.’

During a hospital stay last year one of our favourite doctors observed that Benjamin smiled every time I spoke. ‘He knows mummy’s voice,’ she said. Another doctor commented that ‘his heart rate goes up when you go near’. I can’t decide if that’s the least romantic thing I’ve ever heard, or the most. To be reliant upon a number on a monitor to tell me that my son loves me? Or to be fortunate enough to have him plugged into a machine that actually tells me his heart leaps when I walk into the room?

I hope he knows that I love him too. That my heart, too, leaps when I am with him. That nobody will ever love him more than I do. That whether he knows it or not, I will always be his reference point for love, and he, in his unconditional way, will be mine.

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Blue door number one

dsc_1739.jpgHere in Scotland I sometimes feel a long way away from my friends and family in the south of England. It’s not easy to travel with three children and all Benjamin’s equipment. So I’m super-grateful when people from home put their own comforts to one side and make the journey north to see us here, in the first house on the street, with the blue door. Jackie calls it ‘blue door number one.’

But sometimes visitors unwittingly put Benjamin at risk, as in our recent experience with chickenpox. One encounter led to months of frustration: the simple fact that he’d come into contact with the disease necessitated missing out on nursery, important outpatient appointments and vital respite breaks in case he was infectious to other vulnerable children. When he finally succumbed, like many children with complex needs it became, well, complex. For a couple of days he spiked temperatures and, despite our efforts to manage them, at five o’clock one morning he entered a tonic-clonic seizure. We gave rescue medication and called an ambulance. Two hours later in resus, the seizure was finally halted. A month later, after a second mad dash to A&E, five viral infections contracted due to the damping effect chickenpox has on the immune system, an unpleasant bacterial gut infection, and a recurrence of his previous pancreatitis triggered by the trauma, he’s finally home. Three weeks of breathing support, intravenous feeds, and constant nursing care in HDU. Two operations to obtain intravenous access to his ravaged little body. A month of sending Jackie off to extra nursery sessions and running ourselves ragged juggling childcare, work, and hospital. Caitlin learned to sit up, in hospital; was weaned onto solids, in hospital; cut her first tooth, in hospital. An exhausting month for all of us, which I could have avoided.

Let's stay here Mummy, it's more fun than at home

‘Let’s stay here Mummy, it’s more fun than home!’

And now that he’s home, I’m terrified something similar will happen again. I know that however hard we try, Benjamin is always going to pick up infections: from nursery, from his sisters, from hospital. But should I try harder to minimise that risk? Should I limit the people we see, the places we go, and the people that come to see us? Should I close that blue door on the world?

I always wanted to have an open kind of a house. A house overflowing with children and dogs, artists and musicians, where the kettle was always singing, the biscuit tin always ready, and nobody minded if you walked in with muddy shoes. (I realise this is completely incompatible with my general controlling-verging-on-OCD type character, but I am getting to be an expert at cognitive dissonance). And funnily enough, thanks to Benjamin, we seem to be getting closer to that ideal. We’re becoming part of a community of people who help each other out, share in each other’s joys and sorrows, take on each other’s cooking and childcare, leave their garden gates open and their front doors unlocked. I don’t want to lose all that. But at the same time, and particularly after our experience this summer, it’s tempting to hide away, to discourage visitors and the risks they bring. To avoid the germ-ridden playdates and the noisy parties in favour of snuggles on the sofa and the same old kids’ TV shows. To give in to the fear and close that blue door number one.

Mediterranean style

Mediterranean style

This time last year we were enjoying sun, sea and ftira (a bit like pizza) on Gozo, a small island off Malta, in the middle of the Mediterranean Sea. I couldn’t even have told you how far away from a hospital we were, and it didn’t seem to matter. I can hardly imagine it now. This past fortnight we were due to take another holiday – just a road trip to the south of England to catch up with friends and family we haven’t seen recently (or at all, in the case of one new cousin!), to attend a conference and revisit our old university towns. We could reschedule, but it’s tempting just to write it off, for fear of ending up in an emergency room far from home. To stay close to our local hospital and hospice, to the people that know Benjamin and his needs, to the community team that can come out at a moment’s notice. To stay safe behind blue door number one.

I can see how it’s all too easy for SN families to become isolated. Even sitting in the sports club while Jackie’s in her dance class, I find myself hiding away from the other waiting mums, feeling conspicuous as I set up Benjamin’s tube-feed, shielding him as snotty toddlers run around coughing without covering their mouths. It’s easy to get caught up with caring; to find it just too much of an effort to get out; to feel that your old friends don’t understand and are bored by you; to lack the energy to make new friends; to avoid everything from toddler groups to family gatherings to mums’ nights out. To work from home; to shop on the internet; to hide away from the people who stare, the people who criticise, the people whose lives just seem too Pinterest-perfect, too full, too sorted. The fear feeds into all that. It makes me want to close that blue door and shoot the bolt home hard.

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If we had gone south this week, we would have attended a Celebration of the Life of a very special little boy, a boy who brightened the day of everyone he met and many he didn’t (you can read his beautiful story here), who seized every day and loved every minute; and who we never really knew before it was too late. His passing shows us that life is too short to live in fear and guilt. Life’s too short to spend in blame and recrimination. Life’s too short not to take every chance, accept every offer and keep every door open.

This little boy that I never met shows me that I need to embrace the fear so that my children, including and especially Benjamin, have a full life, a full range of experiences and interactions. Much as Jackie would happily sit on the sofa and watch Ben and Holly all day, there’s no point having three healthy children with no experience of the world of ‘big people’. However much easier it makes life for me, I’m not doing them any favours overprotecting them now. They don’t deserve to miss out on meeting all the wonderful folk out there. The ones who come over only to help. The ones who can’t come to us but so appreciate a visit. The ones that simply do brighten up our day.

We can’t eliminate risk. The best we can do is to minimise it through preparation: through awareness, research, and planning. If necessary, through mapping the A&E departments along our route when we go away; through knowing who to call and where we can get supplies. Through vaccination, sensible hygiene, a decent diet and enough occasional sleep. Through learning when to struggle on and when we have to get to a hospital now. So yes, I will still be fearful, but I’d rather be fearful out there among friends, than fearful hiding away, behind blue door number one.

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‘Come on, Mummy, the water’s lovely!’

Sometimes I just don’t know who to call…

To the many professionals involved in my son’s care,

Thank you.

As you know, Benjamin, in common with most other children with rare, genetic or undiagnosed diseases, has a complex array of physical, medical, mental, behavioural and social problems, arising from an unknown underlying cause. These issues are clearly co-occurring and interrelated, but determining how they are related is easier said than done, particularly in a non-verbal child who cannot explain what came first. It’s often a multiple chicken, multiple egg situation.

For instance, this week I sat up with him through the night as his muscles tensed, his respiratory rate quickened, his heart-rate raced, his breathing rattled and his temperature fluctuated. Trying to work out whether this is the result of a new medication he is on, a respiratory infection, the old medications not working well enough to control his muscle tone, some new kind of seizure, … Was he in pain somewhere, causing his muscle tone to increase which in turn affected his breathing? Was he brewing a chest infection? Was the new drug causing his temperature to fluctuate? Should I do some chest physio, give him calpol, or call 999? (In the end, as usual, we never found the answer; but a course of antibiotics, a trip to A&E, a good night’s sleep and a lot of cuddles later he seems to be getting back to himself).

Following this, when I clearly had too much time on my hands (or rather, was too tired to get on with anything useful), I tried to get down on paper most of the manifestations of Benjamin’s condition (so far).

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As you also know, alongside each of these symptoms comes a professional, a service, an assessment or a provision. You guys. I’ve added you to my map in green (and some necessary evils in red). And sometimes, with so many of you, I just don’t know which one of you to call.

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Benjamin is probably not the most complex undiagnosed child you may deal with, but he is complex enough! And his needs will only grow in extent and complexity as he gets older: continence nurses, school, CAHMS, IEP, DLA mobility component, Motability, adaptations, hoists, lifts, PIP, transition to adult services … or end-of-life care …

We are incredibly fortunate and so very grateful to have so many people and organisations involved in making sure that Benjamin gets what he needs to lead as happy, healthy, long and fulfilling a life as he can. We are definitely the lucky ones. Moreover, we have experienced fantastic coordination of Benjamin’s care. However, that’s something which, sadly, cannot be said for many disabled people and undiagnosed children in particular.

Coordinated care is something that SWAN UK, the support group for families of undiagnosed children, is highlighting this year in the run-up to Undiagnosed Children’s Day on April 29th 2016 (mark it in your diary now!). So, to complement some of the other blogs you may read over the next month highlighting the deficiencies in, and the critical need to improve, coordinated care, I’d like to thank you for the ways in which Benjamin’s care has been coordinated: an example of good (if not best) practice, which perhaps some local authorities could learn from.

  1. We have a small number of overarching professionals (I’ve marked you on my diagram with an umbrella) who have a good understanding of Benjamin’s condition as a whole. If Benjamin has a problem, or if I have a question, I know these people will do their best to find an answer. If they can’t come up with an answer, they also have the confidence to admit it, and the knowledge to refer us to someone more specialist who might. When I don’t know who to call, I call them. I count our community paediatrician and health visitor as our key contacts, and the latter is our named ‘lead professional.’ I’m pretty sure she wouldn’t need that title to provide us with the help that she does but perhaps, for other children, designating the right person as ‘lead professional’ would be a key step to providing more coordinated care.
  2. You all talk to one another. Shock, horror! I don’t mean everyone, all the time: the school bus driver is not in regular discussion with our optometrist; but there is at least some degree of linkage between most of the people in our tangled web of support. Our more regular contacts do their best to attend Benjamin’s Multidisciplinary (medical) and Staged Assessment (educational) meetings, and if they can’t, they send a report or follow-up with me separately. I’ve heard other parents say that they were the only ones to turn up to a staged assessment meeting that should have included at least half-a-dozen professionals. I know these are busy people, but surely they could have sent in an apology to some central organiser, so that someone could twig that attendance would be low and reschedule the meeting for a time more convenient time for everyone?
  3. You are contactable and you actually call us back. I do sometimes bemoan the fact that NHS staff never give out email addresses, when it would be so useful and so much easier than trying to phone to reschedule an appointment with a baby screaming, a 13 kg toddler with no head control on my hip, and a pre-schooler decorating the sofa with felt-tipped pen. And yes, we do sometimes receive an appointment letter 48 hours after the appointment was supposed to take place. But generally, your communication is great. I know if I need to speak to someone, I can. Whether it’s to ask the neurologist to tweak Benjamin’s medication, discuss his feed requirements with the dietician, or talk to his nursery teachers about how he got on in class today, I reliably get put straight through or hear back within 24 hours. Many of our community team – the nurses, respiratory physios and the like – will come out to our house, 30 miles from their base, the same day.
  4. Finally, and at the heart of coordination, Benjamin’s care is patient-centred. Most of the people we see know Benjamin well and treat him as a whole. You don’t limit yourselves to the isolated presenting symptom that lies within your specialty. Our physio wants to know how his sleep has been, our neurologist makes sure he is up-to-date with any feeding issues, our educational psychologist wants to know what the visiting teachers are doing at home as well as what he is being taught at nursery… With a complex child like Benjamin, this sort of approach is crucial, because more often than not the issue under scrutiny is a manifestation, a sign, a cause or an effect of a problem in a completely different part of Benjamin’s makeup.

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I don’t know why the system has worked well for us. Perhaps we are lucky to live in a small local authority, with a small number of special needs children, which facilitates a more personal relationship with professionals than elsewhere. I know many families are not so lucky. Time and resources are limited; departments and individuals are stretched. Poor administration, management and support can lead to frequent miscommunication. All this needs to change.

As parents and carers we also need to take responsibility for encouraging more coordinated care for our children. We need to ask the right questions, prompt a broader discussion, speak up and not accept the first answer we are given. As a trivial example, early in our journey, one of Benjamin’s challenges was a strong tendency to turn his head to the right at all times. Our physio recommended positioning him so that points of interest (a window, a light, a face) were always on his left, to encourage him to turn that way. A week later, our ophthalmologist proposed always providing visual stimulation to Benjamin’s right, where he could see it easily, thereby providing maximum opportunity to encourage his vision, and his brain, to develop. I never thought to mention to each professional what the other had said, to suggest dialogue between the two or seek a compromise that would be best for Benjamin. I just worried that whichever way I positioned him it would be detrimental to one aspect or another of his development. In the end I decided that, on good days when he was less strongly fixed to the right I would encourage him to turn to the left; on bad days when there was no chance of him moving to the left for anything, I would provide things to look at on the right. At a later date I mentioned my strategy to you both, and you both agreed! Nowadays, Benjamin’s head is usually pretty much central and his vision is vastly improved (unless I’ve forgotten to get his fringe cut…).

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For the 6,000 children born each year with an undiagnosed syndrome, without knowing the underlying cause(s) of their symptoms, with only a sketch-map of the linkages between their problems, with no long-term prognosis and myriad agencies involved, coordinating care is difficult, yes, but oh-so-very important. Thank you for seeing that. Sometimes I just don’t know who to call… but thanks to you I know there’s always someone.

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Benjamin’s mum


SWAN UK wants to make sure that every family of an undiagnosed child has the support they need, when they need it. Undiagnosed conditions have been shown to have a lower rate of care coordination than diagnosed conditions. We want every child and young person with a syndrome without a name to receive high quality coordinated care and support both in hospital and at home.

You can donate to SWAN UK by texting SWAN11 (amount) to 70070; or online at https://www.justgiving.com/swanuk/

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