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**

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.

What women want

Or at least, what this woman thinks she wants…

As I write this, it’s International Women’s Day. People around the world are tweeting about great women, inspiring women, beautiful women, high-flying women, much-loved women. We’re valuing women and their achievements, as we should be.

But some women don’t feel so high-achieving. The online parenting forums I subscribe to are filled with exhausted, overwhelmed women asking for advice, asking for reassurance, begging for someone to tell them they’re doing it right, they’re doing a good job, that what they’re doing is worthwhile and it is valued.

I remember one day, a few months ago (I remember it because it felt so different, so special), I went into work for a meeting. I wore a blouse. I wore lipstick. (I drew the line at heels). I carried a handbag. I discussed the rate of deforestation in China, talked about going to a conference. My work was appraised and my ideas sought. I came out with a progress report and a list of targets for the next six months. I felt my brain waking up. I felt alive and inspired, and I felt valued.

Why don’t we value mothers the same way? Why don’t we value ourselves the same way?

The thing with parenting is, people only seem to notice when you get it wrong: I will hear it from nursery if my daughter tries to cut another little girl’s pigtails off; from my daughter if her favourite jumper is not laundered, dried and back on the shelf within two hours of being left on the bathroom floor; from my husband if I shout at the children; from myself if I don’t feel I’ve given the kids enough stimulation, interaction or direction today. But if the kids are fed and (mostly) clothed and (partly) clean and (sometimes) sleeping and (in one way or another) entertained, nobody really notices. I don’t have a manual, I never get a progress report and the targets for one day are usually the same as the next: keep them alive, and stop them from killing anyone else.

The thing with parenting is, the job is never done. No-one ever says, ‘Well done, you’ve finished these kids now, you did a great job. Now move on to the next project.’ Or, ‘You got a B for that one, why not try for an A next time?’ In a results-orientated world, parenting is the only job that doesn’t even get to the examination.

And with no results to chalk up, sometimes it seems all you’ve got to show for your efforts is felt-tip pen (or worse, Sharpie) on your face and a hole in your jeans from kneeling doing nappies all day. Whether you’re a stay-at-home mum, a working mum, a work-at-home mum; whether your partner (if you have one) works hard all day, sits around in his pants playing Xbox all day, cares for the children all day; the chances are you’ve made sacrifices he (in my case it’s a he) isn’t even aware of.

I’ve lost my waist, I’ve gained some wrinkles, my hair is falling out, bits of my bowel are still threatening to escape out of my arse. I don’t have time to shave my legs or paint my toenails. I haven’t had my hair cut for over a year. If I put on makeup it’s usually in the dark. I can’t wear my favourite jumper or my favourite bra in case the youngest wants a snack. I sleep with one arm around the baby and the other braced to stop myself falling out of my six inches of bed. I had a black eye for a week from a Tommy Tippee cup. My schedule is entirely decided by a tyrannical five-year old, a boob-hungry one-year-old, and the regular and emergency medical needs of a complex three-year-old. I have little time and even less time off; but worse I have no autonomy, and zero control.

Yes, we would like you to do your bit. No, we don’t want you to ‘help’. Helping implies that this is all our job, that you’re just picking up the slack for us. We don’t want you to ask ‘what can I do?’ because that relies upon us to take responsibility for the organisation which, frankly, is one of the most mentally-exhausting things. We want you to know which night the bin goes out and just do it. We want you to notice that the house is a tip and tidy it. We want you to remember – just for a change – who needs a packed lunch tomorrow and what time parents’ evening is and whether it’s a nappy wash or a clothes wash today.

But more than that, we want to be valued. We don’t necessarily want flowers and chocolates (although they would be nice); we just want to be recognised for what we do. We don’t necessarily want sexy underwear and a massage (although they would be nice); we just want you to remember and remind us who we were, who we are, underneath the dribble and the vomit and the mountain of paperwork and the mountains of laundry.

I don’t have the answer. Many partners do all this already and it still isn’t working. What can I say? Women are complicated creatures. This isn’t something that can be changed by one husband buying his wife flowers. In fact, our partners probably value us more than anyone; certainly more than we value ourselves as we run around in circles trying to get yogurt off our backsides and keep the baby from getting into the guinea-pig hutch.

Maybe if the world were a little less results-orientated, motherhood wouldn’t seem like such a raw deal. Maybe if we all spent less time thinking ‘what did I achieve today?’ and more time asking ‘what can I do that would make someone happy right now?’ we might, ourselves, be happier women. Because chances are, if you’re a mum, you’re already doing it.

‘Tell me, what have you achieved in this quarter Mrs Davey?’

The best of both worlds

It’s a common complaint among carers of children with complex needs: I spend so much time being a nurse, being a therapist, I sometimes don’t get a chance just to be a parent. I don’t want only to interact with him through a feeding tube, a syringe, and a set of physio exercises in a pair of uncomfortable boots; I want to play with him, cuddle him, enjoy him like my other children, take his boots off, rub his feet and stroke his hair.

So much of our day is taken up with Benjamin’s immediate medical needs – chest physio, suctioning, administering medications, giving tube feeds; not to mention his personal care – nappy changing, dressing, bathing – that sometimes the benefits of longer-term therapy seem so far off, so intangible, particularly for a life-limited child, that it gets pushed to the end of each day and then forgotten.

Don’t get me wrong. I appreciate – so much – the guidance of our physio, speech and language therapist, community nurses and visiting teachers. I am so grateful to be able to keep Benjamin at home rather than in hospital. And I do want him to be the best he can be, now and in the future, of course I do. But sometimes I just want to be his mum.

What if there was a way to do both?

A way to do therapy that had immediate impacts as well as long-term benefits? A way that integrated therapy into everyday life? A way that combined therapy with play, and with communication? A way in which ugly equipment has its place, but sitting together on the sofa can be just as useful? A way in which tiny changes can make a big difference?

We’ve just spent six gruelling weeks travelling back and forth through the roadworks on the M8 to Glasgow’s Bobath Cerebral Palsy Centre, to take part in their Big Lottery-funded, Right Start Programme for children aged 2-5.

We did learn exercises we can do with Benjamin on a ball, on a bench, in a stander, when we want to and he wants to and we have time. But we also learned how to warm him up before exercising, so that he gets the maximum benefit with the minimum effort. We learned how to challenge his head control when picking him up, how to raise his awareness of his own hands whilst putting his jumper on, how to stretch out his hamstrings while changing his nappy, how to relax his fists while washing his hands. In short, how to be a mum and a therapist at the same time, without even thinking about it.

We learned how to use our own bodies to support him in different positions – how boobs and a belly can be more supportive than a chair and more responsive than a ‘memoryfoam’ mattress. How to do ‘peekaboo’ or to pretend we’re going to let him fall then catch him. How to play, or sit together, or even watch TV together, without feeling guilty that we’re wasting therapy time.

We learned how small changes can make an immediate difference. Simply checking his posture, rolling his shoulders back and opening out his chest when he’s seated in his chair or in his buggy can set off a chain of muscular adjustmentsthat help him to hold his head up better, to control his eye movements, and ultimately to interact more meaningfully with those around him (if, that is, he can see past his fringe). Immediate rewards that provide the impetus to keep going even when the long term goals seem so distant.

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It’s not rocket science. In fact I’m sure most of the things we learned could have been taught by our NHS physiotherapist or speech-and-language therapist. But the six weeks of intensive contact time we spent at Bobath would take them maybe a year to achieve with their overfilled, underfunded schedules, and it’s harder to make progress without momentum.

In actual fact, I don’t think we’ve even scratched the surface of what Bobath has taught us. In the thick of an intensive course, with three hours’ driving for each appointment, on top of two days’ nursery a week and the usual hospital appointments and home visits, none of us – least of all Benjamin – really had the energy to get home and practice much more than a few stretches before bed. But armed with a DVD and a personalised instruction manual (complete with comedy photos of Benjamin and I in all sorts of positions) I hope over the weeks and months to come we’ll be able to build on the improvements we’ve already seen in his head control and visual focus, his more relaxed hands and body awareness.

I can’t thank the team at Bobath Scotland enough, for putting up with me and my army of grubby children, for supplying a good cup of coffee each morning, for treating Benjamin with respect and for believing in his potential, and for encouraging me to cut his hair.

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‘If only there was always a nice lady to hold my hair out of the way…’


The Bobath Scotland Cerebral Palsy Centre is based in Glasgow. Their Right Start Project is funded for five years by the Big Lottery Fund. But they rely on fundraising for 85% of their income in order to keep doing the work they are doing across Scotland, from the Highlands to the Islands, supporting the 15,000 people in the country with cerebral palsy and related conditions. If you’d like to support their work you can donate £5 by texting HIGH05 £5 to 70070, or you can find details of how to donate at www.bobathscotland.org.uk/donate.