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

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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

Benjamin doesn’t tick boxes

An open letter to the Head of Education at East Lothian Council

Dear Ms Robertson,

Not having a tracheostomy is a good thing, isn’t it? Not being on TPN, not needing daily IVs, that’s good, isn’t it? Not if it means you can’t access the support you need.

I am sending you an open letter, because your response to my previous, urgent email about my son’s education was met – more than a week later – with a dismissive, incorrectly addressed, response from a ‘service administrator’ advising that it had been forwarded to ‘appropriate personnel who will respond in due course.’

If this administrator had actually read my letter, she would have seen that I am not ‘Mr Davey’ but Dr Davey, Benjamin’s mother (even ‘Mrs’ would have done), and that this matter requires a response not ‘in due course’ but urgently, and not by ‘appropriate personnel’ but by someone at the very highest level who has the ability and resources to make things happen, and make things happen fast.

This is Benjamin. Benjamin is undiagnosed. He has multiple, complex, interrelating conditions affecting many organs and systems of his body, but we don’t know why. When something is wrong, it is difficult to tell which part went wrong first. Chest or stomach? Breathing issues or muscle tone or a seizure?

Benjamin is intractable. Benjamin smiles when he is happy or with people that he loves. Benjamin also smiles when he is in pain. Benjamin tenses up when he is trying to reach for something, and also when he is trying to pull away, and when he is distressed.

When Benjamin is well, he’s very well. On a good day he only needs his regular medications, four times a day, his inhaler and a saline nebuliser once a day, chest physio and suctioning twice a day, a few checks of his gastrostomy and his temperature and you’re done! When he’s poorly, he can be very poorly. He may, within a couple of hours, become so dehydrated he needs IV fluids. He may produce so many thick secretions that he cannot breathe. He may have a tonic-clonic seizure that is resistant to rescue medication and lasts up to four hours. His temperature may drop so low it cannot be recorded with a regular thermometer. His heart rate can drop to 30 or rise to 180 beats per minute. His muscles can become so tense it is impossible to bend him into a sitting position. He can vomit fluorescent green slime out of his nose (Britain’s Got Talent, are you reading?). Benjamin can go downhill very rapidly and recover almost equally rapidly. Sometimes it is impossible to tell whether he is deteriorating or improving. Benjamin needs someone on hand, 24/7, who is able to respond to all these medical eventualities.

Benjamin doesn’t tick boxes. Benjamin doesn’t meet criteria. Especially when we don’t know what criteria he is being measured against. Especially when the ‘professional’ opinion is that he doesn’t even justify being tested against the criteria. Benjamin confuses panels and confounds ‘decision making tools.’

Benjamin, like all three year olds in Scotland, is entitled to 600 hours of funded early learning and childcare per year. Benjamin has a place at a fantastic special needs nursery, attached to the special needs school provision where he will hopefully eventually receive full-time education.

Benjamin loves nursery. He loves his teachers. He loves painting and baking, soft play and ‘body awareness’. He loves the sensory area and he loves when he gets a foot massage.

I love Benjamin’s nursery. But I don’t want to be there the entire time that he is there. Like other mums of three year olds in Scotland, I am entitled to 600 hours early learning and childcare for Benjamin per year to allow me to care for and spend time with my other children, to catch up on paperwork (oh, the paperwork), to catch up on laundry (oh, the laundry), to have a coffee, go for a pee, read a magazine, get my haircut. God forbid, I could even do my job.

But, since Benjamin started his three year provision in early January, I have had to accompany him to nursery because there is no-one there who can meet his medical needs. This was intended to be a temporary arrangement until either his nursery staff could be trained to meet his needs (voluntarily, because they are wonderful, caring people who will go beyond the requirements of their role as long as it is safe to do so), or until provision could be put in place for a medical professional to be with him at nursery. This would be a ‘reasonable adjustment’ as required under the Equalities Act to ensure that Benjamin can safely attend the education to which he is entitled.

As it transpires, Benjamin is too complex to be cared for by nursery staff. They are, after all, teachers, nursery nurses and classroom assistants. They are not medical professionals. (I am not a medical professional but, since having Benjamin, I might as well be). They cannot be expected to, should not be expected to, take decisions about Benjamin’s highly complex, variable, unpredictable and rapidly-changing health needs.

Benjamin’s teachers can be trained to do chest physio but not how to tell when chest physio might make his wheezing worse.

Benjamin’s teachers can be trained how to suction him but not how to tell when he needs suction or when it would cause too much trauma.

Benjamin’s teachers can be trained to aspirate his gastrostomy but not when that is necessary, how to evaluate the contents of his stomach, when to discard them, when to stop his feed, when to switch him to a different feed regime, when to worry, or when to take him to hospital.

Benjamin’s teachers can be trained to administer his feeds but not to evaluate what rate is appropriate for his stomach at any given time.

Benjamin’s teachers can be trained to clean up if he vomits but not how to tell if some vomit has got into his lungs, if he is getting dangerously dehydrated, whether he needs to go home on dioralyte or go immediately onto IV fluids.

Benjamin’s teachers can be trained to administer his medications but not to determine when he needs a higher dose than usual.

If Benjamin’s teachers make the wrong decision, because they are not medical professionals, he could end up in A&E wasting everyone’s time, or he could end up gravely ill. It wouldn’t be their fault. It shouldn’t be their responsibility.

And yet, because Benjamin doesn’t have a tracheostomy, because he is not on a ventilator, or on TPN or regular IVs, nobody will assess him for the Lothian Exceptional Needs Service for Children with Exceptional Health Care Needs (LENS) scheme, despite that he fulfils many of its ‘issues relating to need’ including needing ‘sustained medical support … seven days per week,’ requiring ‘professional trained intervention on a regular basis or in response to an acute incident in order to prevent acute hospital admissions,’ demanding ‘a degree of complex problem solving, and revision of the child’s care plan, on an hour by hour or day by day basis,’ and an inability or lack of competence of carers to meet these needs.

Because no-one will even bother to assess Benjamin for the LENS scheme, he has been downgraded to the frankly mythical HESS (Healthcare and Education Support Service). Because no-one will supply us with a copy of the criteria for referral to HESS, we do not know what boxes he needs to tick. Because the member of staff responsible for making the referral has been slowly drip-feeding us the information we need to supply and the evidence that needs to be provided, rather than giving us a clear outline of the application requirements from the start, it has taken far longer than it should have to put all that evidence together, extending the process well beyond the end of last term and into the next. Because parents apparently have no input into this information, only ‘professionals,’ there is no one to complete the documentation: I, his parent, am the one taking care of him at nursery because there is no professional there trained to do that (Anyone else thinking Catch 22 here…?). Because East Lothian has never even signed up to the HESS scheme, there is no guarantee that Benjamin will get the support he needs through it, and in the meantime we are left waiting, hanging, clinging to the concept of a ‘decision making tool’ that we have never seen and know nothing about. From Christmas to Easter, and now into the summer term…

I know this isn’t your fault, Ms Robertson. If anything, it’s mine: fancy agreeing to go to nursery with Benjamin as a temporary measure until something more permanent was organised? How gullible was that? Of course, that removes any incentive for anything permanent to be organised! I know this isn’t your fault, Ms Robertson, but it is your responsibility, so that’s why I’m writing to you (again) now. I’m no longer prepared to give up my time and my family’s time to provide something that should be provided to Benjamin as a right. The buck stops with you and it stops now.

There are many possible solutions. You could answer – and even fast-track – my request for Benjamin to receive a Coordinated Support Plan. You could provide all special school provisions in East Lothian with a full-time school nurse. You could support Benjamin’s immediate referral to the LENS scheme. He cannot be the only child in the county who needs this kind of support? Even if he is the only one without a tracheostomy…

I don’t want to be one of those mothers. The difficult ones. The ones who kick up a fuss. The ones who go to their MP and MSP and write viral posts on Facebook and go to the press. I am nervous. I wonder, is it too early to protest? The HESS application is, after all, still ongoing. The school staff say they are drawing up a ‘timeline’. The nice lady at the council says she has sent some emails. But how long do we have to wait before we start working together on ‘Plan B’? Do I and the nursery actually have to call your bluff, refuse to provide essential medical support for Benjamin, in order for someone to take us seriously? Does it have to wait until my family is at crisis point?

I don’t want to be one of those mothers, but believe me, I will. If Benjamin does not tick your boxes, your boxes are the wrong shape. If Benjamin doesn’t meet your criteria, you need to rethink the criteria. If Benjamin doesn’t fit your ‘decision making tools’ then those tools are not fit for purpose. Maybe together we can make some better tools?

Yours,

Benjamin’s mum

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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

The invisible line

When you get pregnant, suddenly – before you even begin to show – you notice bumps everywhere. It seems the whole world is expecting. Buggies become ubiquitous; you start checking them out, eyeing up the features that would suit your lifestyle (or the lifestyle you think you’ll have). When you become the parent of a disabled child, suddenly you realise disability, too, is everywhere.

In the past, though I never bothered to analyse it, there was, somewhere in my consciousness, a line dividing able and disabled, walking and wheelchair-bound, those who run marathons for charity and those for whom charity marathons are run. In short, I’m ashamed to say, us and them. Even in writing this blog, I imagined it to be from one “normal person” to another, describing the “novel” experience of living with a disabled child (instead, unsurprisingly, many of my readers – and most insightful commentators – could themselves be described as disabled. I am immensely grateful to them and thankful not to have alienated them (yet) in my narrow-mindedness). Now, I don’t know where to draw that line. I don’t even know which side of it I would put myself! Of course there is no such line. We’re all part of a continuum, part of humanity in all its rich, flawed beauty.

I’ve been to a few “special needs groups” with my son. In a way they’re brilliant – a chance to provide the stimulation he needs and to interact with parents with similar experiences in a setting that I know will be accepting, non-judgmental. In another way they’re horrifying, the first step in shutting our kids off from the rest of the world, in a place with different needs and expectations, a separate caste. This despite the fact that the physical, mental and social abilities, not to mention the characters and interests, of the people within them, are of course hugely diverse.

It’s the policy of my local authority to try to educate special needs children, as far as possible, in mainstream establishments. I don’t know if this will work out for my son. I don’t even know if that’s what I want. Would I rather he continued to be sectioned off with others “like him”? Or that he became the odd one out in a pool of “normal” kids? That he received personalised, specialised care or that he learned to cope in a world built for those closer to the other end of the spectrum?

A friend recently directed me to a great article by Ian Birrell (http://www.theguardian.com/commentisfree/2014/aug/08/ny-disabled-daughter-genetic-wonderland-prejudice-medical-advance), in which he discusses society’s “failure to come to terms with disability … the shameful exclusion of so many people who could contribute so much to communities.” My hope is that by the time my son goes to school, our society – myself included – will be more aware, more accessible to and more accepting of the diversity I’m only starting to appreciate. If you see me staring now at a wheelchair now, I’m – honestly – not gawping, I’m just checking out your wheels

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