Not just a mum…

This post was written for the #SEND30daychallenge, day 9: ‘Not just a mum.’

I’m one of the (few) parents who actually don’t mind being called ‘mum’ by professionals. Yes, I do have a name, but in the context of Benjamin’s health, education or care I see being called ‘mum’ as an affirmation of status. I am his mum: the one who knows him better than anyone else; the one who loves him more than anyone else; the one who will stop at nothing to get what he needs and deserves. I’m not ashamed to be mum; I’m proud of it.

In fact, I was more shocked the other day when we had some men doing work on the house. One of them said to another (he didn’t know I could hear), ‘Is the woman there? We need to check something with her.’ Woman? I’d never thought of myself as a woman. I’m not old enough, not mature enough, not experienced enough to be a woman.

Anyway, here are a few of the other things I am, when I’m not being just a mum. Woman or not, no wonder I’m tired!

  1. Wife
  2. Daughter
  3. Granddaughter
  4. Sistergirl-2501089_1920
  5. Cousin
  6. Niece
  7. Aunt
  8. God daughter
  9. Friend
  10. Lover
  11. Employee
  12. Colleague
  13. Botanist
  14. Scientist
  15. Researcher
  16. Photographer
  17. Writeralphabet-2518264_1920
  18. Blogger
  19. Speaker
  20. Teacher
  21. Student
  22. Campaigner
  23. Benefit claimant
  24. Taxpayer
  25. Lender
  26. Borrower
  27. Christian
  28. Parishioner
  29. Voter
  30. Feminist
  31. Environmentalist
  32. European
  33. Human being
  34. Ape
  35. Animal
  36. Gardenerlawnmower-384589_1920
  37. Cleaner
  38. Cook
  39. Housemaid
  40. Laundrywoman
  41. Handywoman
  42. Hairdresser
  43. PA
  44. Accountant
  45. Secretary
  46. Tea lady
  47. Nurserubber-duck-1404369_1280
  48. Carer
  49. Doctor
  50. Pharmacist
  51. Physio
  52. Therapist
  53. Dietician
  54. Chauffeur
  55. Ambulance driver
  56. Advocate
  57. Cheerleader
  58. Interior designer
  59. Needlewoman
  60. Fixer
  61. Architect
  62. Challenger
  63. Defender
  64. Warrior
  65. Worrier
  66. Spender
  67. Saver
  68. Home-owner
  69. Guinea-pig-keeper
  70. Recycler
  71. Composter
  72. Breastfeeder
  73. Real nappy user
  74. Reader
  75. Viewer
  76. Listener
  77. Shoulder to cry on
  78. Decision maker
  79. Stake holder
  80. Pessimist
  81. Optimist
  82. Introvert
  83. Snob
  84. Slob
  85. Pedant
  86. Nag
  87. Sleeper
  88. Dreamer
  89. Hippy
  90. Sun worshipper
  91. Puddle jumper
  92. Channel surfer
  93. Dancer
  94. Hugger
  95. Kisser
  96. Giver
  97. Receiver
  98. Peacemaker
  99. But most of all I am mum…
  100. … and I’m a very lucky woman.

What would you add?

#send30daychallenge

Five things I’d change

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

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

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

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

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

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

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

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Maybe better wait until low tide though…

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

What would you add? #send30daychallenge

Gone camping (again)

By popular request (although the friends due to come camping with us later in the year may regret it), there follows a report of this year’s Family Summer Holiday: A Wet Weekend in Wooler. Not that I’ve got anything against Wooler. Well not much. Read on.

They say rain sounds much heavier from inside a tent than it actually is outside. I don’t know about that, but I do know that if you pitch your tent next to a river, it sounds like it’s raining all the time. Which it was. They also say* a bog feels much squelchier through a groundsheet than it actually is underneath. This is probably true. It is also certainly true that everything seems harder when you have had less than two hours’ sleep per night for the last week due to a poorly eighteen-month old who just wants to be held and fed all the time. And that everything is more worrying when you take a medically-fragile child away from the comfort-zone of home and hospital. So, from a balanced viewpoint, we probably had a great holiday.

The campsite owner thought he was doing us a favour by offering us a choice of sites. Of course, he doesn’t know that we are the most indecisive people on the planet and that, whichever site we chose would inevitably result in one of us feeling that it was the wrong choice, one of us feeling guilty for making such a bad choice, and both of us blaming the other one for those feelings, for the rest of the holiday.

Anyway, we eventually selected the ‘secluded, sheltered, quieter’ pitch on the basis that on the day we arrived the campsite was rather windy and overrun by Duke of Edinburgh Award students on their expedition. As the days passed this turned out to be the ‘just next to the road, just above the river, surrounded by poisonous plants with yummy-looking pink flowers, exceedingly muddy and rather midgy’ pitch. On the plus side, it did have a play park right opposite and was well frequented by cute fluffy rabbits and cute fluffy ducklings (and their rather aggressive parents. And all their shit). At least Caitlin got a lot of practise at ‘What does the duck say?’ ‘Quack.’ Without us even having to say ‘What does the duck say?’

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‘Quack’

So, we arrived at the campsite on a Wednesday evening with our car (leased on the Motability scheme solely on the criterion of having the biggest boot of all cars) packed from floor to ceiling – determined this time to be prepared for every eventuality. Of course this meant that the first eventuality was having to unpack the entire boot to get the tent out, leaving all our medical gear, sleeping bags, blankets, pillows, hot water bottles, emergency cake, cuddly toys, etc., out in the drizzle-that-became-persistent-rain while we spent the usual two hours putting the tent up, pegging out all the guys, attempting to tighten all the guys, realising that all the guys were threaded in such a way that they couldn’t be tightened, arguing, re-threading all the guys, swearing, arguing, and re-pegging and tightening all the guys.

This years’ spectacle was enlivened by the fact that Caitlin is now mobile and exceedingly speedy. We put Jackie on red alert, chasing Caitlin around the campsite and shouting a warning if she got to close to any road, river, poisonous plant or live animal, on hearing of which one of us would let go our portion of the tent and leg it at full pelt to intercept her, while the tent crashed to the ground behind us.

As we were slowly heating up our spaghetti bolognaise over a nearly empty gas canister on the first evening I remarked that it was getting a bit midgy. ‘Don’t be silly,’ said Ric, as my skin started to come up in large red weals, ‘You don’t get midges in England. Keep the tent flaps open, it’s a lovely evening.’ The next day, after I dosed Jackie up with Piriton to counteract the itching, we mentioned to a lady in a shop that we were camping. ‘Ooh, really?’ she said, ‘That’s brave. How are you coping with the midges?’ Turns out midges are less respectful of national borders than one (husband) might think… The next evening, we kept the tent flaps shut.

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I don’t care about midges – I’ve got cake

After tea we gave Benjy and Caitlin a quick wipe with a wetwipe (Jackie was deemed old enough to cope with the excitement of the campsite shower, and returned more covered with grass than she started) and had just about got everyone settled in their sleeping bags, if not terribly sleepy given that it was still completely light outside, when the unmistakeable tinkle of an ice cream van was heard. So while I commenced Benjy’s night-time routine of feed and medications, Ric and Jackie set off up the hill and returned with three enormous 99’s plus a complimentary, slightly smaller one for Caitlin. By the time everyone had eaten/spilled their ice creams and brushed their teeth again – and it was still completely light outside (and inside) – there was no chance of anyone going to sleep any time soon. So we all lay down in the bedroom together for stories and milk and an ongoing game of musical roll-mats until it finally got dark and we crashed out, one by one.

 

Wooler is a delightful little town on the edge of the Cheviots with a remarkably good Italian restaurant hidden behind an abandoned gym hidden behind a pub, an old fire station converted into a depot for fish-and-chip vans, and an amazing number of butchers. Even more delightfully, we were unaware until we arrived that we were there for the weekend of the Glendale Festival: a showcase of marching bands, fancy-dressed children, a lady on a pennyfarthing, and some plastic duck races on the river (sadly, Postman Pat failed to turn up). We were also unaware, but reliably – and entirely correctly – informed by the lady at the fish-and-chip van hub, that ‘T’always rains on festival weekend.’ In fact, even the pictures in the festival brochure showed a distinct predominance of umbrellas…

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Entirely appropriate camping attire (attitude optional)

On Thursday we decided to explore our surroundings, so we wandered up, then down, then up again into Wooler (which, unsurprisingly given its beautiful location on the edge of the Cheviots, turns out to be surprisingly hilly). I say wandered; between Ric and myself we took it in turns to carry Caitlin, push Benjy in his chair and push Jackie on her bike, except on the downhill bits where it was more of a case of chasing Jackie on her bike shouting ‘stop when you get to a ROAD!’

By the time we got into town it was lunchtime so we walked up and down the high street a couple of times, deliberating, before returning to the first café we came across, which was spacious and friendly and had a spaghetti bolognaise special on the board. So Jackie had her third helping of spaghetti bolognaise in two days and Caitlin threw jacket potato around the room. After this brief interlude of peace Benjamin started vomiting copious amounts of bile out of his nostrils, so I leapt up and suctioned him with our very noisy portable hoover while Ric attempted to contain the girls and we both ignored the questions from the children at the table next to us. Eventually the café-owner came up to me. Here we go, I thought, she’s going to ask us to take our caravan of children and medical emergencies elsewhere. ‘Is there anything I can get you?’ She asked. ‘Do you need any water? I know what it’s like, I had a little boy like yours.’ I could have hugged her.

After lunch we managed a bit of shopping: a waterproof jacket and large amounts of wine, chocolate, wetwipes and Calpol. We only had to make one phone call to the hospital (to check if a small amount of overgranulation around Benjamin’s new feeding tube required us to do anything – it didn’t) and only had to discard one outfit in a bin due to a nappy explosion and the fact that I couldn’t face storing that amount of poo for the next three days before we could get home and wash it… so I count the day as a success.

Friday was also a relative triumph, spent as it was on the Heatherslaw Light Railway, ‘England’s most northerly narrow gauge railway.’ Once we had got over the usual confusion and convinced the driver that Benjamin was a wheelchair-user and not just a child in a pushchair, we were allowed to use one of the very accessible wheelchair carriages for the twenty-minute trundle to the village of Etal. There we had lunch in a nice tearoom which had the foresight to provide ride-on toys in the garden so that Jackie and Caitlin could terrorise the other guests. Benjamin and I gate-crashed an AA meeting in the village hall in order to manage another nappy explosion on the floor of the disabled toilet, and then there was time for a quick climb on a cannon before the train back.

 

‘It’s okay,’ said Ric cheerfully later that evening, ‘The forecast has improved: there’s a whole hour tomorrow when it’s not going to rain.’

‘Really?’ I said, ‘That sounds promising.’

‘Yes,’ he replied, ‘It’s going to hail.’

So on Saturday – along with the rest of the population enjoying the first day of the English school holidays – we cut our losses and drove to Alnick, had lunch in Sainsbury’s and tired the girls out in the swimming pool. Returning to the tent, we spent a happy evening trying to avoid walking on the squelchiest bits of the floor, and watching the drips gather on the inside of the flysheet (I really do think they were just condensation resulting from containing five people and a heap of wet swimming towels on a day with 100% humidity. Ric remains less than convinced.).

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Drying off in the Italian. It’s even warm enough to remove my jumper, look.

The rain continued throughout the night (Oh, the joys of taking a five-year-old to the loo on a wet night. Oh, the repeated refrain of ‘Don’t touch the walls!’) and throughout the packing up the next morning. We were reduced to strapping the children into the car and putting on Mr Tumble’s ‘Party’ CD (on the plus side, we didn’t have to listen to it ourselves) while we took the tent down and attempted to get it back into the bag it came out of. ‘I remember this: you fold it in thirds, then roll it.’ ‘Maybe it’s quarters?’ ‘Let’s try and shake some more water off it’ (tent still contains more than its weight in water, and now we are both soaked too). ‘It must be folded in half and then thirds.’ ‘Does it matter if we don’t get it in the bag anyway?’

As I emptied and repacked the boot for the final time, to get Benjamin’s buggy in and also to find space for the authentic Spanish bowl we purchased at one of the festival stalls as a souvenir of our time in Wooler, Ric and the girls emerged from a temporary tea room run by the WI, bearing emergency cake supplies for the journey home. ‘I don’t want to go home Mummy,’ said Jackie, stomping her wellies. ‘Quack,’ said Caitlin. So we must have done something right, right?

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Overcome with excitement

The way I look at it, things can only get better. I mean, that’s got to be about as bad as camping gets, hasn’t it? Non-stop rain, midges, twenty-hours of daylight making it nigh-on impossible to get the kids to sleep. A toddler just old enough to run into the road, fall into the river and eat the enticing-looking foxgloves but not old enough to understand the word ‘no’. We spent four days packing up, two hours pitching the tent, approximately three and a half days actually being on holiday, two more hours taking down the tent, and another couple of days unpacking and cleaning the mud off everything, not to mention the laundry, and the fact that the tent is, more than a week later, still lying in our garden ‘drying’, with the lawn slowly turning yellow beneath it… Don’t tell Ric I said this, but I think it might feel more worthwhile if we actually went for a fortnight next time… Roll on October (and God help the friends who are coming with us).

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*they may not

[To read the previous installment in this series, click here]

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

‘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