When you love church but your child hates it

The Christian Church is far from perfect.

I, and my family, are so lucky to have found in St Anne’s a small branch that is growing, thriving, outward-focused, community-centred, accepting, caring and inclusive. We are fortunate that Benjamin, although ‘complex,’ is not ‘challenging.’ Yet I am confident that, even if he were noisy, disruptive, violent, or anxious, our church community would do everything in their power to welcome us; that they would see this as a shared problem to solve, not a personal problem to ignore.

This isn’t always the case. It’s not easy being a SEND parent, and the Church can be a great support – but it can also be a challenge or even a hindrance. I’ve been asked this week to share an anonymous post written by a fellow SEND parent and a fellow Christian (if I am honest, a more committed Christian than I, who lives and breathes the Spirit in her life and in her writing). I am both saddened and excited to share this post.

Saddened that not everyone is treated they way we have been – with gentleness and compassion.

Excited that through sharing these words I may be able to help encourage and promote change in the church and elsewhere. Every group – perhaps especially every church – can always do more to avoid becoming complacent, cliquey, and to foster inclusion for all members, especially those who no longer show their face or raise their voice.

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“My faith means everything to me. Church has always been a huge part of my life but now I wonder if I should continue going.

I went faithfully every week before I had children. When my daughter was born I continued to take her from the first Sunday she was born. She remained with me in the service until she was toddling and then she attended the crèche where I took turns helping out.

Everything was going well until it came time for her to leave crèche and start going to Sunday school instead. I went with her for the first few weeks but she really wasn’t enjoying it and I reasoned with myself she was perhaps still too young or just struggling with the change.

I spoke to the person who was running the crèche and they agreed my daughter could stay in crèche a few months longer. We tried again but she still hated Sunday school so I would bring toys with me and keep her in the service with me. In the beginning it wasn’t too bad. She would look at books, play with her happyland figures or sit on my knee for a cuddle.

Then she started getting bored and disturbing the service so I would stay in for the worship and slip out to the foyer with her and her brother for the rest of the service. If I am deeply honest I hated it. I hated the fact I was no longer included or could listen to the sermon. I was upset my children did not like Sunday school and that all of a sudden I seemed invisible.

I have had church in the foyer for six years now. My daughter is now 9 and still hates Sunday school. But something has changed: not only does she hate Sunday school she now hates church completely.

At 5 she was diagnosed with autism. I used to be able to stay in the service for the worship but now that stresses my daughter so much she screams. The music is so loud, the church is so busy and the lights are so bright. I rarely manage through the first song before I find myself back out in the foyer with my children because my daughter is crying and screaming.

I loved church for years but now my daughter hates it and I am heartbroken.

My eyes have been open to things I never noticed before. It seems churches want children who will take part in nativity plays, sing choruses with actions at Easter and fully engage in summer holiday clubs. They want children who can fit in with the programme, who require no additional support and who respect the volunteers. They want the children who run enthusiastically into the hall when it is time to go and bring out lovely crafts to show their parents when the sermon is finished.

What about the children having church in the foyer like mine? Children who find church difficult, who find social situations a huge challenge, who get overwhelmed by noise and crowds and change.

The very mention of going to church now makes my daughter anxious. She recently told me she doesn’t feel welcome there at all.

That broke my heart.

No amount of toys or technology or books can convince my daughter to come to church with me any more. Bribery has lost its appeal now and I fear I am damaging her spirit by forcing her to come against her will.

Yet my faith means everything to me still and I want to be in church.

I am broken hearted that church is not the place of love and acceptance to my child with autism that it should be.

Until that changes I have to put her first. So from now on I won’t be at the place I love on a Sunday anymore.

My daughter will be happy. I am heartbroken.”

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What a difference a drug makes

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

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

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‘Just resting my eyes’

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

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

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

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

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‘Morning everyone!’

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

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

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

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Thank goodness for Shane the log-man

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

 

Festival spirit

Yesterday, I took the two little ones to a festival – Daytripper – on my own. It’s not the sort of thing I would normally do. I’m not great at mixing with people I don’t know, or don’t know well. It’s in a crowd that I feel loneliest and most conspicuous. And with an energetic toddler and Benjamin, with his tube and his bile-bag and his suction pump I was sure going to be conspicuous. And without my chatty biggest girl and my husband I was sure going to be lonely.

Ric and Jackie were away camping (with his best mate and her best mate and our car and a bottle of whisky), and this festival only comes around once a year, and it is only two minutes from our house. So my options were to sit around the house listening to it from outside, or go and join in the fun: try not to worry about the routine of medications and feeds and physio and do something ‘normal’ families do.

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The children were both totally up for it

Maybe I’m over-egging it a bit: it wasn’t exactly Glastonbury – it wasn’t even an overnight thing. It was a few bands I have to admit I hadn’t heard of, in a small park with only one entrance for Caitlin to escape out of. The sun was even shining and the loos were cleanish (even if I couldn’t get the buggy through the door). And, as I said, it was literally two minutes’ walk from our house.

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Mummy, why is the sky that funny blue colour?

I did find it a bit difficult to mix at first – but mostly because I had to keep breaking off from conversations to chase Caitlin, or to move Benjamin into or out of the sun as I fretted whether he was getting too hot or too cold. But Caitlin made friends with a little boy through the medium of bubbles, so I braved the bar for another sort of bubbles…

…and as the sun went down and the pyrotechnics (really!) came on, we all drew closer to the stage and I found myself drawn into a friendly crowd of local mums, dads and neighbours. The music was great, the pizza was yummy (if a little grass-covered after Caitlin had finished with it), Benjamin enjoyed the lights and the music, and Caitlin stayed within sight most of the time, primarily because she didn’t want to move too far from the donut stall. We stayed out almost to the end – well past the children’s bedtime if not mine – and listened to the last couple of songs on the way home. I even managed to get both children to sleep after all that excitement – in time to reward myself with a shower and another (small) glass of wine.

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Grass-cuttings with your pizza, anyone?

So were we conspicuous? Well, maybe – but certainly no more so than the 87-year-old who was dancing with anyone and everyone and enjoying every minute of it. Yes, it was tricky managing tube-feeds and nappies without getting everything contaminated with crazy-string, but no-one else seemed to bat an eyelid. Yes, a little girl came up and asked questions about Benjy (much to her mum’s consternation) but not in a fearful or critical kind of a way, just out of innocent interest. Yes, Caitlin did repeatedly make off someone else’s football but, well, I just pretended she wasn’t anything to do with me!

And was I lonely? Well, of course it felt strange being there without my husband to hold, and without my biggest girl to indulge (we brought an Elsa balloon home for her) but really I was reminded how warm and welcoming this small town can be, if I only stop looking for problems and let it.

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Feeling the love

At the same time as I was dancing the afternoon away with my children, another SWAN family elsewhere in the country were visiting their music-loving little boy’s grave, leaving sunflowers in memory of his bright spirit, which passed just over a year ago. I honestly cannot imagine what that must feel like. To visit your own child’s grave. However hard it is – however hard – to care for Benjamin, to get out and about with Benjamin, to fight for what he needs and to do things that ‘normal’ families take for granted; it cannot ever be as hard as that.

So however conspicuous, lonely, difficult and downright different our life is, we need to make sure we keep on living every minute of it to the full. I will dance until I’m 87 if I can keep my loved ones dancing with me. I certainly intend to be dancing at Daytripper 2018.

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