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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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.

Just because it’s difficult, doesn’t make it right

A few of days ago an article popped up on my timeline. It was entitled How working in an abortion clinic changed my mind about terminations, and was written by a student midwife, Lucy Kelly. A bit ‘clickbaity,’ but I was baited and I clicked.

It is a beautifully written, convincing, strongly worded essay. The direction in which the author changed her mind (spoiler alert) was towards terminations. She wasn’t put off by what she bravely and compassionately witnessed, she was inspired by the fortitude of the women she met in that clinic. And some of what she wrote, yes, I do agree with. It is a terrible decision to have to make and I do not believe many parents take it lightly, whatever they decide.

But some of it, profoundly, no.

‘Women who are having late term abortions are only doing so if their baby will not have any quality of life outside the womb.’

Termination of pregnancy after 24 weeks may legally be considered, in the UK at least, on the grounds of foetal abnormality if there is a substantial risk that the child would suffer physical or mental abnormalities that would result in serious handicap. There is no definition, in the law, as to what constitutes a ‘substantial risk’ or a ‘serious handicap.’ Quality of life is not required to be evaluated.

Sadly, on this basis, women are undergoing mid and late term abortions of babies with Down syndrome, with spina bifida, with hydrocephalus, with cleft palate. Conditions which do not, necessarily, affect ‘quality of life,’ whatever that means. Let alone affect it so much as for it to be preferable to have no life at all. Who are we to decide, as mothers or as a society, that those lives are not worth living, or would be better not lived?

I was advised to abort my son at 38 weeks because his brain was not properly formed. Because he would likely never walk, talk or feed himself. Ours wasn’t one of those miracle stories you read in the Mail where the doctors are proved wrong. My son is indeed profoundly disabled – he will never walk, talk, feed himself. He will likely never roll, sit, or support his own head. However, I would dispute anyone who says he has no quality of life.

And, while the child’s quality of life may be one of the reasons (rightly or wrongly) for women to have a late term abortion, I know that it is not the only one. In fact, the child’s quality of life may be less important in the decision-making than the effect on the mother and any other members of the family. I know because I could have been one of those women. The arguments (and yes, there were arguments: painful, heated, lengthy and almost irreparable ones) surrounding our decision whether to abort, centred partly on our son’s likely quality of life, but partly on the impact on the rest of the family – myself, my husband, our at the time one-year-old daughter, the grandparents. Had we decided to abort – and don’t get me wrong, we very nearly did – it would have been in no small part for the latter reason: to ensure a better life for our existing daughter, to protect her from the isolation, stigma, and lack of opportunity that may come with being sibling to a disabled child. Protection that I believe could and should be achieved by changes in society: by inclusion, accessibility, support, kindness and a lack of judgment. Not by terminating the life of an innocent individual.

I do not doubt that the mothers, fathers, families, who choose abortion on the grounds of disability do so with much heart-searching. As, in fact, do those who choose abortion for other reasons. They may do it on the basis of misinformation. They may do it under strong pressure. They may do it because they truly believe they have no other option. But that does not make it right.

‘I cannot fathom how any politician can believe that they understand more about a woman’s health, and survival, than the doctor caring for her… This is not your life. This is not your pregnancy. This is not your experience. You do not get an opinion’

No, I cannot fathom that, but this is not just – or often even at all, except in incredibly rare and tragic circumstances – about the mother’s life. This is about – as Ms Kelly agrees from 24 weeks at least – a child’s life. The child whose life is at stake doesn’t get an opinion unless doctors, parents and policymakers give them one. That is our duty as a civilised and compassionate society – to give a voice to those who are voiceless.

‘Until you have lived this hell, made this decision, held the tension of two terrible fates and had the courage to make a choice that will break you to pieces, you do not get to judge a woman or decide what is best for her.’

I have lived this hell. I have made this decision. It still breaks me every single day. I am not judging these women; I am judging the circumstances they are placed in, the information they are given, the pressure that is brought to bear, and the expectations forced upon them by the misguided and mis-prioritised society that we live in.

I wonder if Ms Kelly is confusing respect for these mothers – which I share unreservedly – with agreement with their decision. Just because the decision was difficult, just because it was made thoughtfully, carefully, heartbreakingly, soul-searchingly… doesn’t make it right. The solution to this terrible, terrible dilemma is not to make it more acceptable, easier, less traumatic to abort a baby; the solution is to work change in our society so that it is easier to bear that baby, to birth that baby and to bring that baby up, whatever its nature and its circumstances.

**As a courtesy, I offered this piece to Spinoff, the site on which Ms Kelly’s article was published. They declined to publish, saying they weren’t ‘that kind of website’. I think it’s sad that they aren’t the kind of website that would like to show two perspectives on this issue; that they are willing to publish an opinion piece about a certain group of women, but not willing to publish the thoughts of one of those women; that they are not keen to be involved in working the kind of change in society that I describe above. I hope other readers will be**

What women want

Or at least, what this woman thinks she wants…

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

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

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

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

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

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

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

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

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

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

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

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

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

Responsibility

If you’re a parent, you may remember that feeling of arriving home from the hospital, putting baby in his/her car seat down in the middle of the room, and realising, Shit, I’ve got to keep this thing alive. With Benjamin, that’s an experience that happens over and over again.

The more hospital stays he has, and the longer they last, the more I get used to relying on the medical staff to keep track of his feeds, measure out his medications, monitor his temperature. I start to depend on his sats monitor to tell me if anything’s wrong, to let him lie around in his vest because I know it’s warm on the ward and his temperature is being checked hourly.

When we are discharged, late in the day, with an hour’s journey ahead of us and a whole family to feed and put to bed, I’m terrified I’ll forget something, miss something, or make a mistake. After each admission I have to get my head around new medications, changed doses, a new feeding regime, and a barely-recovered child.

This time, having been discharged once only to be readmitted for another fortnight, I had even more fears than usual. Normally I’m desperate to get out but this time I refused to take Benjamin home until he’d gone 48 hours without vomiting – which he very nearly managed a few times before vomiting at the 47th hour. When he finally did, acknowledging that I’d likely be just as nervous no matter when we took him home, I agreed to face it sooner rather than later.

The first feed back at home, he vomited straight back at us. The terror started to tug at my throat: it was happening again. He’d end up dehydrated, unresponsive, swollen, on a drip, maybe worse. After a month in hospital, stretching our family to breaking point, I couldn’t bear the thought that we might have to go back.

For two days we struggled as he vomited back more than half of his daytime feeds. I barely slept in case he was sick in the night. I spent an hour over each feed, trying to slip the milk down slowly without his stomach registering it, then an hour hovering over him … then an hour cleaning up. I approached each feed with trepidation, stomach churning, hospital bags ready by the door.

I feel like I always make the wrong decisions, especially when I have to balance the needs of the rest of the family, the disruption it causes the girls when Benjamin is in hospital. I rush my kids to the doctor only to be sent away with a flea in my ear and a note on file: ‘over-anxious mother,’ yet I carry on at home when we really should be on our way to A&E. I long for an objective observer to tell me what to do; but no-one knows Benjamin as well as me. Ultimately it has to be my call.

Thankfully, this time we had a halfway house – our wonderful children’s hospice, where we were due to go for a weekend break. I had been desperately looking forward to this as a chance to rest and be spoiled; now it became a place of safety too, somewhere with trained medical staff to share the responsibility and the decisions. I vacillated up until the moment we were due to leave. I phoned the hospital. I phoned the hospice. I packed, unpacked and repacked. I spent the journey phoning our dietician (I wasn’t driving). I fully expected to have one cup of tea and be sent packing to the Sick Kids.

But for once, it was the right call. For once, instead of getting worse, Benjy started to get better. In fact he pulled the usual stunt that he pulls at Rachel House, of sleeping all night and being no trouble to anybody so that I felt a complete fraud even being there!

The main factor in Benjamin’s turnaround was a step backwards, a step further away from ‘normal’ and closer to ‘medicalised’: we switched his feeds from three ‘meals’ a day to one long, continuous feed using a pump. It was at my request and I think it was another good, though dispiriting, call. I’ve been here before: I recognise that feeling of relief tinged with disappointment from when we finally gave in to tube-feeding instead of bottles. Now, it’s relief that Benjamin is getting the nutrients he needs and keeping them down, that he can stay at home with us and away from the monitors and needles; and disappointment that he no longer experiences breakfast, lunch and dinner like the rest of us, that he’s hooked up to a tube day and night, harder to cuddle, harder to play with.

But that’s a small price to pay, and it may yet be only a temporary one. Benjamin’s still not well; he’s tired, he’s flat, he’s pale and he’s sore; there’s a long road of appointments and interventions ahead of us to work out exactly what went so wrong over the past month and how we can rectify it, but for now we’ve found a way to manage it and to keep him at home where he belongs. The gnawing panic in my stomach is – slowly – ebbing away. The responsibility is firmly back with me, but I can handle it.

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Back in my own bed (‘Mummy, I’m okay, you can turn the light off now’)

The long months

The eight months since that positive test have felt like the longest of my life. On top of the relentless tiredness, sickness, heartburn, constipation, nosebleeds, piles (am I oversharing yet?); on top of the endless scans and tests; has been the constant – and increasingly impossible – battle not to acknowledge this pregnancy, and the gnawing fear that I would have to terminate it.

I have to admit I never thought the doubt would go on this long – technically to full term in fact. I had naïvely hoped we might know either way by Christmas, or early in the New Year. In the end our final MRI scan was scheduled for Tuesday 26th January – which turned out mark the start of the longest week of waiting of all. When we arrived for the scan, the hospital was in the grip of a power-cut and running essential operations only. The staff searched around and managed to find us an appointment a few days later, on the Friday. The scan was successfully performed, but there were no doctors available to interpret the results. After a restless further weekend of waiting we finally got the phone call, late on Monday, 37 weeks in, that everything looked normal. The relief was almost too much to take in.

Don’t get me wrong, my relief is not that we won’t be having a disabled child. I know I could have loved and cared for another like Benjamin, that he or she would have been a valuable addition to our family. But that wasn’t an option. My relief is that at last, with no more scans or tests to go through, there is now nothing that can prompt a termination. I won’t have to fulfil the promise that I was no longer certain I would be able to keep. Our gamble has paid off. Our little family has survived, and some time in the next month, it will become a family of five.

Cue a frantic rush to get ready everything we hadn’t dared to before. To get the mountain of baby clothes down from the loft and sort them; to clean the cot, the buggy, the sling, the car seat; to start discussing names. My amazing husband not only surprised me by coming home early, bearing flowers, the day we got the good news, he also rushed upstairs that evening and started putting together bouncy chairs and baby-gyms that had lain in pieces in the loft. In my self-absorption I hadn’t realised that he, too, had been finding the long wait so hard, and the relief so immense.

Jackie too, although she doesn’t know the back story, is desperate to meet the new baby. At nursery she draws picture after picture of “Mummy and the baby in her tummy.” She keeps asking, when will the baby come? I’m so glad we won’t have to let her down (although if it’s another boy she will not be impressed!). And Benjamin, though he doesn’t know it, will benefit from having another child to watch, learn from, and emulate.

Worth millions when she's famous

Worth millions when she’s famous

Today my wonderful friends at Kidzone (our local SN early years group) threw me a surprise baby shower. I was totally gobsmacked. I have no idea how they managed to organise cakes, balloons, games, food, presents, in the few days since the scan result. But what was really special was to be surrounded by so much love – for me and for the baby. I came home laden with gifts including a whole set of tiny white bodysuits, each decorated with a unique design (and all the left over cake, of course).

Dare I put these works of art through the wash?

Dare I put these works of art through the wash?

So finally, after the long months of waiting, hiding, fearing, masking our feelings, we can all look forward with joy (and a small amount of trepidation). As the crocuses start to poke their heads up through the soil, we emerge, blinking, from a dream into the light. Whether or not the moses basket is ready, whether the name is chosen, whether the freezer is stocked or the house is clean, our little one will be joining us soon. He or she is head down and ready to go. Thank you for following me on this journey without judging our choices, for putting up with my outbursts of grief and hypocrisy, for listening. I can’t wait to introduce you to our new arrival.

We become warriors

There is no greater warrior than a mother protecting her child (N.K.Jemisin)

When Jackie turned one, she started at nursery two days a week. It meant that I could return to work, and that she could benefit from interacting with other children and adults. Although of course I missed her (I would run all the way back from work to pick her up, and not because I wanted to get fit), I was confident that she was ready for it: by that age she could toddle around to get the toys she wished to play with, could point to things she wanted but couldn’t reach, was starting to feed herself and to choose what – and how – she would eat. (Within the first week the staff reported giving her a bowl of pasta and a fork – she refused to touch it; they put pieces of pasta on the fork and tried to feed her – she refused to open her mouth; they tipped the bowl of pasta out onto the table and she ate every single piece with her fingers. That’s my girl!).

Although I would have loved for Benjamin to go to the same nursery as Jackie – and they would have been happy to take him and would have done their very best for him – it just couldn’t provide the support needed for him to thrive and grow. At the age of two, he still can’t sit up, can’t even roll towards something he wants, can’t feed himself, can’t make himself understood. Without the one-to-one facilitation of a specialist carer, which a mainstream nursery can very rarely provide, Benjamin would not be able to interact with other children, to show his likes and dislikes, to take part in activities, to learn.

So we were delighted when Benjamin was offered a place at a state-funded specialist early years centre, part of the special school he will most likely attend for his primary education. It’s a brilliant school, modern, well-equipped, with small classes and one-to-one care provided by wonderfully enthusiastic, patient, dedicated, trained staff. Although at this stage he’ll only go for a couple of hours, twice a week, I’m confident that it will make a huge difference to his physical, social and intellectual development.

There’s one snag: the school is twenty miles away, the session times clash with Jackie’s nursery hours, there is no direct public transport link, and we don’t have a car. And the council – at a panel meeting to which I was not invited – decided not provide transport for Benjamin (as they would for older children with special needs whose most appropriate school is not their local one).

So we faced a choice. We could rent a car twice a week (which would cost approximately the same as Benjamin’s entire disability living allowance), take Jackie out of nursery twice a week (which she loves, and learns from, and is entitled to) and drive Benjamin (and Jackie, and the new baby when it comes) to his sessions. Or we could say “thanks but no thanks,” to Benjamin’s place and have him miss out on the early years’ education which can make such a huge difference to the development of children like him. In effect, I had to choose between the needs of two of my children. One of them would have to lose out.

But, I take after my mother. Or maybe, as my starting quote suggests, I just am a mother. I’m not one to give up without a fight. I love a little campaign, me. So I started writing letters. I wrote again to the council expressing my disappointment. I wrote to my MP, my MSP, each of my local councillors. Several of them promised to get involved. I wrote to my local paper, the East Lothian Courier. Within a couple of days a reporter got back to me and agreed to do a story.

The very same day that the reporter contacted the council for comment, miraculously, I had a call from the service manager for early years, and then one from the transport manager. Out of nowhere, it seems, they had discovered an escorted bus travelling in the right direction at the right time to take Benjamin to nursery, and an escorted taxi doing the return journey. They were prepared to fit Benjamin into this existing transport as, the service manager repeatedly emphasised, a “grace and favour” offer. Problem solved. “Relief for boy’s family” ran the headline in the Courier.

What I don’t understand is why – when there was appropriate transport running so that it would not even cost anything extra – they couldn’t have found this solution straight away. I hear on the grapevine – and this explains the “grace and favour” thing – that they were averse to setting a precedent for fear that other two-year-olds would demand the same service. A precedent that vulnerable children should be enabled to attend the education that is so vital to their development? Shocking. And also not a massive problem, given that the class contains precisely three children at a time, of which Benjamin is by far the furthest from the school. Of course, had they just quietly allowed Benjamin to slot into the transport that was available, no one would even have been aware that it was an option. Now it has been splashed all over the Courier maybe their unwanted precedent has been set…

Forgive me if I sound cynical. A few details remain to be worked out and there is plenty of chasing up still to be done, but I am confident and relieved that a solution has been found that enables both my children to get the early years education they deserve. Yet the whole episode leaves a sour taste in my mouth. I feel, at the same time, guilty that perhaps by being pushy I have got something for Benjamin that other children might not receive, and also angry that I had to spend time and energy writing, fighting, for something that could so easily have been achieved without any trouble to anybody. Time and energy that I could have spent doing therapy with Benjamin, playing with Jackie, earning money, even sleeping.

We have received such wonderful support for Benjamin since we moved to this area. The foot-soldiers of the services – the doctors, the nurses, the teachers, the therapists, the social workers – they know Benjamin, understand his needs, appreciate that we only want the best for him, and strive to make that happen. They have been dedicated, flexible, compassionate and generally given above and beyond what they are contracted to provide. His visiting teacher even offered to drive Benjamin and I to his sessions at her own expense on her day off if it would have helped.

Where (I think) the system fails our families is in the mysterious ‘panels’ and faceless bureaucrats who control the money and decide where services should be allocated. Without meeting us or our children, without listening to our stories, they weigh us up against one another and against their budgets, policies and fears of ‘precedent.’ It is because of them that families like ours – who already face so many barriers and challenges – have to find the extra reserves of energy to fight. It is (partly) because of them that so many special needs parents face related battles with depression, anxiety and isolation. It is because of them that many do not have the energy to fight any more. I’m lucky – I am both new enough to this to still have some energy, and bitchy enough not to take anything lying down.

We have been so fortunate; our journey so far has been easy. Many parents have to fight from the very start. Fight for recognition that there is even a problem. Fight for treatment, fight for therapy. Fight for suitable education, suitable housing. Fight for respite, fight for benefits that should be an entitlement. On top of being a parent, nurse, therapist, teacher, accountant, PA – oh, and maybe hold down a job too – we must become warriors for our children. I am honoured to have joined their ranks.

Preferred warrior costume

Preferred warrior costume