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

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‘Nanny Grinstead,’ with love

When I was five, my grandmother took me – just me, not my mum and dad, not my noisy, bitey little brother, just me – on a holiday to Folkestone. I don’t remember very much about it: I know we stayed overnight in a hotel, which was a massive treat – mum and dad never, ever, took us to hotels. I know we went on the Romney, Hythe and Dymchurch steam railway, because I remember seeing a postcard we brought back. I remember there was shortbread in little packets in the hotel room. But mostly I remember the feelings that weekend generated. I had never felt so special. For 48 hours Nanny made me the centre of her world. I had never felt so special.

I guess that’s what all grandparents do. But to me, ‘Nanny Grinstead’ (named for the town where she lived, to distinguish her from my paternal grandmother, ‘Granny Poole’) seemed to make me feel extra-special. I was her first grandchild and her only granddaughter. I gave her her first great-grandchildren and her only (to date) great-granddaughters. Although once I left home and moved north I rarely saw her, I felt a bond stretching across the miles and the generations, and I know she felt it too.

If I inherited most of my looks, my impatience and my perfectionism from my paternal grandparents (I wish I was less of a perfectionist. I wish, like Nanny Grinstead, my favourite phrase was ‘That’ll do’), I like to think I got at least some of my better characters from Nanny. Above all, I hope that like her I am always generous with my money, belongings and time.

Born in 1922, Nanny (whose real name was Marjorie), passed away earlier this week, just a few days after her 95th birthday, the last of my children’s great-grandparents to do so. Nanny lived all of her life in East Grinstead, and knew everyone there. You couldn’t go ‘up the town’ with her without stopping to greet half a dozen people. She didn’t gossip, she just loved a chat and to look out for her friends. At Christmas, I have never seen anyone with so many cards as her. They would cover every sideboard and surface, cascading down the walls like waterfalls.

She was widowed when I was eighteen months old and lived alone in a neat little bungalow. I remember always being fascinated by the under-floor heating, which would rise up from slatted vents in the carpet like steam from a New York fire hydrant. There was a macramé hanging basket in the porch and always antimacassars embroidered with ducks on the armchairs. Not to mention the fact that she had two loo roll holders side by side in the WC. 

I imagine it would be pretty frustrating to have your neat and tidy domain invaded every so often by a pair of marauding grandchildren but, if it were, she never let on. She tolerated us rushing in, pulling all the games out of the toy cupboard, bouncing up and down on the giant teddy she once won in a raffle (she was the luckiest person I ever met – I never knew her to enter a raffle and not win), and rearranging every single one of her precious collection of wooden elephants. The only place we somehow knew we shouldn’t disrupt was her bedroom, although I would often sneak in to gaze at her sitting at the dressing table with her back to me, brushing her hair, or to look at myself in her full-length mirror, something we didn’t have at home – if I wanted to see my bottom half I had to stand on my parents’ bed, then jump off again to see my top half.

Nanny was definitely no pushover – if I needed a telling-off, I would get a telling-off. Hard-of-hearing for as long as I can remember, if you spoke too quietly, or merely said something she didn’t understand or didn’t agree with, you’d receive a brusque ‘Eh?’ But a decade of dependency in a care home weakened her mind, body and spirit. By the end, she was pathetically grateful for my pathetic attempts at communication from a distance. By the end, her hair was thinning and her skin almost translucent, so fine it felt like silk. By the end she had few belongings, although more than you would expect could fit into that one small room at the care home, little dignity, and very few peers left. She outlived her younger sister and most of her friends. There were occasional glimpses of her feisty nature and sparkling eyes, but truly she had had enough. Thank goodness for her eternal companion – Sky Sports.

Nanny had a pathological obsession with sport. Until her stroke, she would get up every Monday morning to go swimming in the local pool. I went with her once or twice – it was freezing! At school, she excelled in stool ball – a uniquely dangerous Sussex sport kind of like cricket played at head height. Football, tennis, snooker and especially cricket, you name it, she would watch it. She would take a cantankerous like or dislike to the players based on very little – during the nineties she could frequently be heard referring to the England cricket captain as ‘That Atherton.’ She also loved nothing better than a game – and I think having grandchildren was a pleasure to her for that reason. Cards, especially, were her favourite. She would get out her button box for betting and me, my brother, mum and her would play Newmarket while dad hid behind his newspaper and muttered about the ‘Devil’s picturebook.’

When I was in junior school, I interviewed Nanny about her time in the Land Army, for a project. She was full of tales of the camaraderie, full of jokes about having to bury the carrots in sand to stop the mice from eating them. It must have been tough for an educated middle class girl to knuckle down and work the land like that, in all weathers, but if it was, she didn’t say. And it didn’t put her off a bit of cultivation. The garden at her bungalow was always full of runner beans, raspberries, rhubarb and sweet peas – even if it was generally full of weeds as well. She focused on growing, not on tediously weeding, and who can blame her? In autumn she would take us blackberrying along the old railway line.

After that trip to Folkestone, I would regularly go and stay with Nanny Grinstead for a few days at a time. The part of the week I most looked forward to was her Thursday afternoon shift volunteering in the League of Friends café at the Queen Victoria hospital. I guess it was my first taste of work experience, my first taste of doing something useful, my first taste of interacting with people, and I loved it! I loved sneaking out from behind the counter to collect the dirty cups. I loved the big old urn and the checked tea-towels. I loved counting the stock – packets of Frazzles, Wagonwheels and Polo Mints – to see what we needed to re-order. I loved taking orders, taking the money, and giving people change. I realise now that I must have got under her feet all the time. I must have been slower than her at all those tasks. She must have had to recheck the stock-take when I wasn’t looking. But she never let on. She never told me to go and sit down and do some colouring. She always indulged my enthusiasm. She was the first person to let me go in a loft – my parents always assumed I would put my foot through the ceiling.

Many of my memories of Nanny revolve around food. Whenever I stayed she would make sure we went out for lunch at least once. Sometimes with her best friend, Auntie Joan, whose gruff Scottish husband would only eat sausages. Nanny would always get in a Kellogg’s ‘variety pack’ of cereal for my breakfast. She had a small kitchen with mugs hanging on hooks under the cupboards. Together we would bake sweet concoctions of sugar and desiccated coconut stuck on a base of melted chocolate. She would do things with condensed milk. She made an amazing pudding of ginger biscuits soaked in sherry, stuck together with whipped cream and the entire thing coated in melted dark chocolate. It looked like an enormous caterpillar and tasted like all the good bits of a trifle with none of the fruit. On one visit she brought out an old electric waffle-maker (my Grandad had been a great one for gadgets), and every visit after that we begged her to make batter for waffles again. When I went off to university she let me raid the boxes and boxes of old cooking equipment in her big double garage (She drove a succession of Minis – trading each one in when it was three years old so that she didn’t have to go through the stress of getting an MOT). All my saucepans, wooden spoons and fish-slices came from her. I must have been the only person who turned up to Fresher’s Week with two fish slices.

The last time I saw Nanny was in April. She was in a geriatric ward in Redhill from which she was not expected to return. Yet, once again her tough-as-boots old body pulled her back from the place where perhaps her mind already wanted to go, had wanted to go for some time. I am so glad I made the trip: I took Caitlin (who tottered around the ward, almost tripping up gentlemen in dressing-gowns and Zimmer-frames, delighting the old ladies, and causing the staff to ask if I could possibly bring her in every week to cheer everyone up). She will now be able to know, if not to remember, that she did meet her great-grandmother. I think maintaining that link between the generations is important. And I am glad, now, that Nanny is finally able to rest with peace and dignity. No longer reliant upon others for her most basic of needs. No longer in pain and not able to understand why. No longer alone in a sea of faces. And I am glad that she got to spend her final days in the caring environment of the ‘home’ that had been her home for so long, with staff who truly did care for her and were as much family to her as I was, with a decent palliative care package that meant she didn’t have to move to an unfamiliar, clinical hospital ward. Nanny’s death is the end of a generation for my family, the end of an era, the end of something special, but the special qualities she embodied live on in her daughters, granddaughter and great-granddaughters. May she rest in peace.

Therapy for two

To be honest, I’m terrible at making time to do therapy with Benjamin. A quick stretch while I’m changing his nappy. A couple of rolls when we’re getting dressed in the morning. Plonk him in his chair facing in a slightly different direction each day, give him some toys to look at and that’s about it.

To be honest, by the time I’ve done all the treatments that keep him alive – the inhalers and the nebulisers and the chest physio and n-p suctioning; by the time I’ve given him his medication six times a day and made up his feeds and checked his stoma and washed and dried all the syringes; by the time I’ve done the day-to-day essentials – washed him and dressed him, brushed his hair, changed his nappies, set up his sleep system, carried him from room to room, there doesn’t seem to be much time left for ‘therapies:’ the things that won’t keep him alive but will help him develop. The things that will stretch him, mentally and physically. They drop to the bottom of the list, somewhere between making sure everyone gets fed and catching up on the endless piles of paperwork that come with having a child with complex needs.

To be honest, putting him into shoes or splints or getting him onto a gym ball is quite hard work – he’s not getting any lighter or any more flexible. Getting him into his standing frame is really hard work. Sometimes even keeping him awake or finding a toy that grabs his attention is really, really hard. I’m scared of hurting his stoma, fearful of pulling out his feeding tube. I’m worried I might drop him!

And I don’t want to push him – we’ve spent too much time in and out of hospital to want to push him. Too much time wondering if his seizures could be caused by overstimulation. Too much time fearing that rolling around on the floor during physio would make his reflux worse and therefore make his chest worse. Two days a week he goes to nursery, which is brilliant but exhausting for him: there’s no way he’d manage any exercises on top of that. There’s usually at least one other day in the week he’ll have some kind of therapy anyway – a physio visit, or a session with the visiting teacher, and after 45 minutes’ intense interaction with them he’s shattered. Maybe he’ll be a bit off colour one day; another day he’ll have had a bad night and just need to sleep. And then it’s the weekend – surely he deserves a break on the weekend? Or is that just me?

Because Benjamin is classed as ‘life-limited,’ I justify it by the reasoning Saira Shah, author of the Mouseproof Kitchen, calls upon when speaking about her daughter, Ailsa, before she passed away at the age of eight. “What’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked, being dangled upside down. I don’t see why she can’t have a life where she is just cuddled.” But for us this has degenerated into a life where he just sits and watches me work.

Our physiotherapist is wonderfully understanding. ‘Don’t see it as a therapy programme,’ she says, ‘you have enough on your plate. Just do it when you’re sitting with him anyway.’ But when am I ever ‘just sitting’ with him? When do I ever sit, alone or with my children? When do I stop rushing around and connect with any of them?

And then, then there are the girls. They are both part of the problem and part of the solution. It is so hard to find time to focus upon Benjamin, who just sits there passively, dozing, when there are two caterwauling bundles of energy, one stout and curly, one lithe and blonde, pulling you in opposite directions with opposite vociferous demands.

But, no thanks to my lax approach (and partly thanks to our sessions at the Bobath Centre), he’s getting good. He really is. He can look to both sides now – and hold it. He can sit straight and tall with only a minimum of support at his lower back. He can bring his head up with you from lying. He can hold his head up when you lean him sideways. I hadn’t really noticed until I was watching his physiotherapist working with him one day. It’s much easier to see when you’re watching from a distance. And suddenly I thought, hang on, I want some of that.

It was like a switch flipped in my head. Doing Benjy’s therapy isn’t a chore, to be got through as quickly as possible, to be ticked off the list. Benjy’s therapy isn’t in conflict with enjoying him – it’s time to enjoy him, to let him show me what he can do. It’s precious time to spend with him, revelling in his achievements, building a better connection. Just as I spend time with Jackie reading stories before bed, or building Lego. Just as I spend time breastfeeding Caitlin and pushing her on the swings.

I guess I’m starting to appreciate this a bit more now he’s getting older and I’m not necessarily with him 24/7. With his carers, nursery, respite, and time at Rachel House (not to mention time in hospital), we’re slowly dividing his care up between more and more people, which means less and less Benjy-time for me. I need to start claiming some of that time back in ways we will both enjoy and benefit from.

And could it even help me to slow down a bit? Instead of rushing around the house could taking half an hour to ‘just sit’ with Benjy also be a half hour for me to breathe, relax and regroup?

And could it actually be of benefit to his sisters too? Instead of leaving them in front of some uncensored crap on YouTubeCbeebies could we at least and watch Cbeebies together, in the same room, and talk about what we’re watching, while Benjy’s practising his moves? I could learn a lot from Benjy’s little sister, bouncing up and down on her tiptoes in front of his chair going ‘Jenjy – uh – uh – uh – Jenjy’ and demanding to have him lowered down to her height to play. Because that’s all his therapy is, really, play. It’s not arduous, it’s not unpleasant. It’s a bit of stretching out, a bit of rolling on a gym ball, a bit of singing nursery rhymes and doing the actions, a bit of looking at things he likes to look at. What am I making such a meal about? Why am I putting it off? Therapy isn’t in conflict with the cuddles, it’s a way to cuddle him more. We could all do with a few more cuddles in our lives – and Benjy-cuddles are the very best.

We are the 57%

A few days ago, in a fit of frustration, I churned out a quick post about parking. Exciting, huh? But to my surprise it’s received over 11,000 views and generated a whole lot more Twitter traffic than I’ve ever had before.

So, what gives? Even posts I’ve sponsored on Facebook rarely get more than a few hundred views. Of all the posts I’ve written – on the difficulties of being undiagnosed, on the amazing work of children’s hospices, on the sanctity of human life, even on the importance of properly accessible toilets (which are certainly more scarce and arguably more important than parking bays), it’s the one on parking that’s sparked the most interest. I’m not bragging; I’m gutted.

So, what gives? Sure, in the UK we love our cars. We talk about the traffic almost as much as we talk about the weather. Victoria Coren Mitchell, presenter of Radio 4’s Women Talking About Cars, said the other day that for women, especially, cars represent a very special combination of both freedom and safety. For people with disabilities, cars probably mean even more in both those respects. Having only had one for six months, I love my Benjamin’s car, although I wish we didn’t have to use it so much. But I certainly don’t love parking – once I’ve got within a yard or two of the kerb I just want to shut the door and forget about it.

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If this was a disabled parking bay I guess I’d be tempted to park in it too…

So, what gives? Sure, in the UK we hate being told what to do – whether by a traffic warden, or Brussels, or a yellow line on the road and a blue badge in the window. But does that fully explain why I struck such a chord (or hit such a nerve, depending on your side of the debate) with a post about parking?

My theory is, it’s because parking is one of the few everyday battle lines between the disabled and the able. In fact, it’s one of the few situations in which disabled people are actually visible in our society. Yes, the able can complain about those of us ‘scrounging’ benefits. They can complain about us giving birth to children who will be nothing but a drain on society. They can complain about the effect inclusion has on the educational achievement of their mainstream children (hint: bugger all, apart from possibly making them less judgemental than their parents). But unless you actually know a person with a disability, you are unlikely to come up against these issues every day. Yet even if you don’t know a person with a disability, you probably park in a supermarket, school or public car park on a fairly regular basis.

And that’s the root of the problem really, isn’t it. Many people simply don’t know a person with a disability – or don’t realise they do. The Disabled Children’s Partnership, a coalition of charities campaigning to improve support for disabled children, young people and families, last week launched a new campaign called The Secret Life of Us. The aim of the campaign is to change the fact that an amazing 43% of the British public don’t know anyone who is disabled.

In parking, the 57% of us who have a disability, care for someone with a disability, or know someone with a disability, come directly up against the 43% who, through no fault of their own, don’t think they know anyone with a disability. The former know all too well the need for disabled bays, and cannot understand why anyone else would park in such spaces when they are so clearly needed. The latter cannot see the need for disabled bays, consider them an unearned privilege – particularly if we are not in a wheelchair, do not look disabled, or have children that are small enough to lift – and don’t see why they shouldn’t use them when it suits them.

So maybe this is where we should start. At the battle line. At one of the few places where the 57% become visible to the 43%. Disabled parking spaces are all about accessibility. Without accessibility it is very hard to have inclusion. Without inclusion it’s impossible to have integration. Without integration, it is extremely difficult to foster understanding. And without understanding, well why the hell shouldn’t I use that disabled parking space to save me a couple of minutes of my valuable time as a contributing member of society popping into the shop to get a pint of milk? It’s a vicious circle.

The Secret Life of Us campaign aims to break that circle, to help us – the 43% and the 57% – get to know one another. Now, the 43% can’t do anything about this – they don’t know we exist, remember. Their hands are tied. It’s up to us, the 57%, to start building awareness, to be brave and not shy away from sharing our stories and showing our lives in all their flaws and their beauty. Because everyone’s life – disabled or not – has flaws and it has beauty.

If you read my blog (thank you!) you’ll have a glimpse of that: stressful, sometimes traumatic, hard work, rewarding, ever-changing and featuring rather a lot of bodily fluids… But there’s a lot more I can do. Everyone in my community knows Benjamin, but not everyone in my community knows that I had anorexia in my twenties. I’m in awe of friends who are becoming more open about their mental health – in person and on social media. Social media certainly has a role to play here: the ease with which we can share The Secret Lives of Us – anonymously if we wish to – makes now an ideal time to bridge the gap between the 57% and the 43%.

I’m not saying we all need to go around shouting about our bowel movements and breakdowns and whether we’ve had breakfast all day long… but if the 57% can share a little more and the 43% can listen a little more, maybe we can all judge a little less. Because parking shouldn’t be a battle line. There shouldn’t be any everyday battle lines. ‘The disabled population is the world’s largest minority of which anyone can become a part at any time.’ We are the 57% – and one day you might be too.

If you would like to be involved in the Disabled Children’s Partnership, you can sign up at http://e-activist.com/ea-action/action?ea.client.id=78&ea.campaign.id=71897, follow it on Facebook and on Twitter. Share your stories, and read others, using the hashtag #SecretLifeofUs

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I’ll let you into a secret: sometimes our life is a bit dull #SecretLifeofUs

This is a disabled parking bay…

This is a disabled parking bay. There are four of them at my son’s school. They are close to the school entrance and they are wider than normal bays. Doesn’t it look inviting?

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This is my son Benjamin’s blue badge. I had to apply for it, and pay for it. Many disabled people have to fight for it. It entitles me to park in the disabled bays at my son’s school (and anywhere else) when I have him with me and he will be getting out of the vehicle, or when I will be picking him up and putting him into the vehicle.

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These are four of the cars that were parked in the disabled spaces at my son’s school today. None of them is displaying a blue badge.

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Maybe their drivers aren’t aware that although this isn’t a public road the school still enforces the blue badge scheme? Maybe they thought they had a good reason to park in the disabled bays – all four of them? Maybe they were short of time? Maybe they’re just lazy? Well, in case any of them are reading this…

Here are some of the reasons I need to park in these bays:

  • Benjamin comes with a lot of equipment: not just a wheelchair, but a feeding pump, suction pump, medications, syringes, nappies. More equipment than I can fit on his wheelchair, which means I have to push it with one hand. The further I have to push it with one hand, the less safe that journey is for him. If I have my other children with me, well, they just have to take their chances.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to park it (and him in it) behind the car, in the path of other vehicles looking for their own parking spaces.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to carry him (all 18 kilos of him) round to the back of the car. I don’t mind the damage to my back. What I do mind is the risk of pulling out his feeding tube, which won’t stretch from his seat to behind the car. If his feeding tube is pulled out, he has to undergo an operation under general anaesthetic to replace it. When Benjamin undergoes an operation under general anaesthetic, he usually comes back ventilated and in intensive care.
  • If I have to park on the road (which I usually do, because if the disabled bays are full you can bet it’s because all the non-disabled bays are full), all of the above apply, plus I have to carry Benjamin out into the path of oncoming traffic.
  • If I have to park on the road, the likelihood is someone else will park so close up to the back of my car that I won’t be able to open the boot, let alone get Benjamin’s wheelchair into it.
  • One of Benjamin’s problems is that he cannot control his own temperature. In the extra time it takes me to get him out of a warm car into his buggy and under a blanket if the buggy is at the back of the car and not beside the door, he can become hypothermic. In the extra time it takes me to push the buggy from the main road to the school, he can become hypothermic. An extra couple of minutes in the cold can mean several hours of struggling to get his temperature and heart rate stabilized at a normal level.
  • If Benjamin becomes suddenly ill, which he does, often, without warning, and dangerously, I need to be able to pick him up and get him into the car and off to hospital, pronto. I may not have time to wait for an ambulance. I may not have time to drive around looking for a parking space, walk round the corner from that parking space to the school, and push Benjamin back round that corner to the car. Minutes count.

Here are some of the reasons you may not need to park in these bays:

  • You are not disabled
  • You don’t have a blue badge
  • You don’t have a disabled child
  • You don’t have a pile of medical equipment to transport
  • You can walk 100 yards without getting hypothermic (no, that’s not an exaggeration)
  • You can self-transfer to your car seat
  • You don’t need to get a wheelchair into your boot (God forbid need enough space to use a ramp or hoist…)

Now, you may think ‘I’m only parking there for a minute.’ But if that minute is the minute when Benjamin and I arrive at school, you’ve put us in an unsafe situation for the whole day.

You may think this is a small, petty issue. But this issue puts my son, and many others like him (after all, this is a school with a special unit attached that caters for children with severe and complex needs from across the county) at risk.

Please, think again. Thank you.

Our Inclusive Home

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.

KSLear_2017_03_11_Davey_7-2

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**

First world problems

‘First world problems.’ It’s a phrase I see quite a lot on my newsfeeds. Used self-deprecatingly to mean, ‘This shouldn’t really get to me but I need to moan about it,’ or to joke about someone overheard in the supermarket:

‘Waitrose had run out of own-brand humus. I don’t know what I’m going to do for lunch now. #firstworldproblems’

‘My car’s broken down. I had to walk the kids to school without any mascara on. #firstworldproblems’

I even came across a blog post the other day about the ‘dilemma’ of ‘choosing the right sunglasses for your face shape. I mean, wtf, really?

And now this. More than twenty people dead, many of them children. Nearly sixty people injured. Young people still missing. Families torn apart. Parents grieving. Siblings who will never grow up together. Puts it in perspective, doesn’t it?

How can I go on, complaining about the antisocial parking outside my house, when somebody lost a child last night?

How can I go on, making a fuss about the lack of accessible toilets, when somebody lost a child last night?

How can I go on, protesting about having to accompany Benjamin to nursery, when somebody lost a child last night?

How can I go on, trying to take a stand on climate change, when somebody lost a child last night?

How can I go on, fighting discrimination against disabled people before and after birth, when somebody lost a child last night?

Because if I don’t go on, terror has won. If we don’t stand up for fairness, thoughtfulness and compassion even in the small things, this is where it ends. Whether it’s the man giving a stranger a hug or a lift home from the Manchester Arena, or one mum giving another the twenty pence she needs for the coffee machine outside ICU. Whether it’s fighting for a little bit more understanding among my neighbours, or for the rights and dignities of people I’ll never meet. Whether it’s casting a can of beans into a food bank, or casting a vote on June 8th. I may have a small voice, but I won’t be silenced, against those who would have us all clawing our way to the top and crushing those who fall beneath. Or those who would have us give up, close our doors, and at the same time close our hearts.

Yes, in the context of last night’s events, changing places toilets and preschool SEND provision are rightly viewed as first world problems. But in the context of last night’s events, life can be short and every problem is worth solving, to make every life as good as it could be. Okay maybe not the humus…

… in fact, maybe even the humus. If you have a little boy with ASD who is only able to eat something exactly that shade of beige and that particular style of mushiness. Maybe even the humus, if you’re an anorexic teenager who has pushed and pushed and pushed herself to go buy a snack that is healthy and contains some calories and then is completely floored to find it not there and ends up going home and eating nothing because anything else just hurts too much. I’ve been there. Everyone is fighting a battle you know nothing about. Let’s keep fighting, together, without judgement and with compassion.

#Manchester