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A Parent Perspective: Interview with Amy

/ jess / Leave a comment

This is my latest interview in an occasional series – A Parent Perspective – with Amy. Amy lives with her family in Cornwall, working as an artist and making beautiful pots. Her daughter, Rosa, has a rare genetic disorder and I really enjoyed talking to Amy about how she has trusted her instincts as they have navigated their lives with Rosa’s life-limiting condition.

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.

Could you describe your family?

There’s four of us – me and my husband, Gareth (we’ve been together for our entire lives), our daughter Rosa who is 13, and our son Ithan who is 11. Rosa has Canavan disease which is a rare genetic brain disorder and means she needs a lot of help. We live in a lovely, tiny cottage on a river in south Cornwall.

What are Rosa’s favourite things to do?

She likes anything that is a bit shocking, that makes you jump, and things that you build up to. We play lots of games, Kerplunk and board games. She enjoys body noise humour. She likes interaction, being in a group of people and being with other kids, which is important and has been lacking so much over the last couple of years. It’s been really difficult to facilitate because she is very vulnerable and we have had to be horribly cautious for ages.

What impact does her disability have on her day-to-day life?

It affects every aspect of her life. She’s nonverbal, in a wheelchair and doesn’t have very much movement. Rosa’s communication is largely through facial expression. She does things brilliantly at school, but at home she just expects us to know, which is cheeky but fair enough. She’s got a computer at school that she operates with a switch but at home she’d rather we just entertain her, not have to press a button to make it happen. She looks up and smiles for yes, and looks down and doesn’t smile for no. Her condition is progressive and we feel things are getting harder for her and she’s in a fog more often. She’s had more seizures over the last few years which means constant managing, trying to make her as comfortable, involved and happy as possible without overwhelming her.

When did you find out Rosa had this condition?

We had a completely blissful first couple of months of just being in love with our new baby and I felt really good. I started to wonder when she was about three months, but we didn’t talk to anybody until she was seven months old, when it was probably quite obvious to everybody else. I don’t think I wanted to know, and as soon as we talked to professionals it was like the floodgates opened. Everybody wanted to do tests and Rosa was in and out of hospital. You’re in such unfamiliar territory, it’s like being in the midst of a hurricane, just trying to make sense of it. We got her diagnosis very quickly – it was only three months after we’d first talked to our health visitor, and we were lucky because it’s a really rare condition.

We’d always wanted more than one child – we were initially quite frightened to go ahead with another pregnancy but were able to have a CVS test at 11 weeks of pregnancy to rule out Canavans. Ithan is the polar opposite of Rosa. He was feisty from the moment he was conceived, and then he arrived and held his head up, like, ‘Here I am.’ He did everything really early so there was no chance to worry. With Rosa our whole life landscape changed, so to then have this little miracle of normality come along was (both) wonderful and sad.

How has your approach to appointments and professionals changed over the years?

We’ve been quite good at that from the start. We sacked our first paediatrician because we didn’t like his attitude. We felt like he didn’t like children and he never addressed Rosa. His initial examination of her destroyed me. I felt he was so cold and moved her around like she was a thing.

Initially we did all the appointments that came and we were more compliant, but we’ve always resisted medicalising Rosa’s life as much as possible. Some people look the condition up in the book and say we’re going to do this and this without assessing if that’s necessary and weighing up the pros and cons for Rosa. Gareth comes from quite a scientific family and I come from a hippy, intuitive family which makes a good combination. When we first got the diagnosis I was really frightened to know the facts whereas Gareth was doing massive amounts of research. He could then drip feed me the information when I wanted it which worked really well.

It sounds like you had such strong instincts about the kind of parent you were going to be and that advocacy bit of it came naturally.

Yes, I think so. There are experimental treatments going on in the States and we looked into all of that but we felt that if Rosa’s life is going to be short then we want it to be as fun as possible. We don’t want her to spend it in hospital, recovering from surgery which probably won’t make that much difference. We decided at the beginning it was about her quality of life and we’ve got more strict about that. Unless we can see how an appointment is going to benefit Rosa, we try not to do them.

Do you think there’s things about the uniqueness of Rosa that has then affected the way that you’ve been a parent to Ithan?

I know that having Rosa as a sister has hugely affected the way Ithan is compared to his peers. There are so many times when we’re going to do something and then we can’t because of Rosa. He’s so good about it and adaptable. He’s very tolerant of Rosa needing a lot of care and attention. Gareth and I work in our business together, at home, so one or both of us is always around and I hope Ithan feels there’s enough attention for him. We try to make the most of good days and seeing the relationship between Rosa and Ithan is precious.

The last few years we’ve started intentionally doing more things separately with the kids. We take turns taking Ithan camping, because Rosa loves camping but our camper van has got too small for us all. It’s important that Ithan can have some undivided attention. For years we took Rosa’s chair across the moor but now she’s big and it’s bumpy. Sometimes you have to recognise there are limits to what you can do, and Rosa would enjoy juggling at home more than dancing across the moor in the weather.

Does Rosa enjoy school?

It’s been really patchy how much Rosa’s been at school because of Covid, and we’re also in the middle of a massive hellish battle with the council about transport. It’s so frustrating and emotionally exhausting because it should be simple. Rosa’s had a taxi to school for years. It’s a brilliant school which she’s been going to since she was three, and she loves it. She had a scary medical event in July when she stopped breathing and had a cardiac arrest out of the blue. She is now fine but transport stopped because they said the driver and assistant weren’t qualified to do it. I’m arranging the training for them but the council keep moving the goalposts.

A school day is very short anyway, in terms of getting work done. We’re both self employed and driving Rosa to school, or her not going to school, has an impact on the wellbeing of our family. Ithan’s school is in the opposite direction and we’ve only got one vehicle, so it’s all juggling while trying to run a business.

Do you have help from carers?

Not enough. We have one carer who brings toys and plays with Rosa for a few hours after school. It’s okay if one of us is here with her, and it’s better than having nobody, but it’s not a great help.

We had more help when Rosa was little. My brother used to work with Rosa and that was great. We had Homecare for some years which was mostly helpful although it was awkward to make changes, and you didn’t always know who was coming. Then there were cuts, and they decided that Rosa wasn’t disabled enough and we lost 30 hours a month of help, which made a big difference. Now Rosa is so big, it feels difficult to get anybody in who can be properly helpful because we don’t have any hoisting or any way of getting her upstairs apart from carrying her.

How has Rosa’s feeding has changed over time?

For the first few days she had trouble feeding, and then she was brilliant at breastfeeding and didn’t want to stop. She was feeding constantly until she was nearly two, and she used to love eating. They were telling us she needed to have a gastrostomy* and we were saying she doesn’t. She was gorgeous and chubby. It started to get more difficult when she was about six. She was aspirating more and it got harder to keep her hydrated when she was poorly. Gradually she was enjoying eating less, finding it more difficult and taking longer. She had a nasogastric tube for a bit, after she’d been ill, and that’s when we started supplementing with formula. We decided it was time to get a gastrostomy, which was a surprisingly hard decision but it felt like Rosa had said, ‘I don’t want to do this anymore, it’s too hard.’ She was eight when she had a gastrostomy and afterwards she didn’t want to eat anymore. Even birthday cake and ice cream.

We started doing blended food* almost as soon as she had her gastrostomy. Our previous paediatrician had told us about it. Rosa’s got a really tiny tummy capacity so we have continued to use formula as well. I blend a lot of her food with formula and when she’s at school they feed her formula, because it’s straightforward. Now she also has a pump feed at night. It was another thing that I was resistant to, because I feel like your tummy should be able to rest when you’re sleeping, but there’s always a bit of give and take – a tug of what your instincts say and what your child needs. Sometimes she just has water in the pump because milk is just too much, and sometimes anything is too much. She has gained weight, which is brilliant for her, but a nightmare for us because we’re still carrying her around the cottage. She’s still really slight and nowhere near the size of a typical 13 year old girl, but at least she now has some reserve.

Terms: *Gastrostomy – feeding tube through abdomen into the stomach

*Blended food/diet – liquidised food put through a feeding tube

You can find Amy on Instagram, Facebook and her blog is here.

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A Parent Perspective: Interview with Anoushka

/ jess / Leave a comment

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Anoushka who has two sons, Spike and Oscar. Amongst the many interesting things Anoushka talks about is setting up Transport Sparks, a social group for young autistic transport enthusiasts.

How would you describe Spike?

Spike is 12. He’s very funny and charming with a good sense of the absurd. He’s quite a good negotiator – very skilled at getting us to add an extra leg to a journey, or more time on his devices. He loves going to the cinema, trains, hand dryers and adventuring around London. He’s also autistic and has ADHD (inattentive form), so he has some struggles with typical forms of social communication and he has sensory processing differences which can be a bit intense for him. He also has an amazing memory and a very interesting way of looking at the world.

When did you realise Spike wasn’t neurotypical?

From quite early on. He had a lot of trouble sleeping and feeding. He missed a few early milestones, he didn’t point or crawl. The books said all babies are fascinated by faces but he was not at all. Both my husband and I thought about autism before Spike was a year old. He started struggling in stay and play groups and while he started speaking at a year old, his language developed slowly. We went to see a GP when he was two, and had a diagnosis of autism by the time he was three.

How did you feel about the diagnosis at the time?

I felt like the possibility of autism had been rattling around in my brain for such a long time that it was a relief to have the question answered. There was an optimistic aspect to it because now we could get on with our lives. But it’s a challenging process to go through as a parent, to have to list the ways your child isn’t like other children, the difficulties they have.

Following the diagnosis, we were occupied with trying to set everything up – to apply for a statement of special educational needs, find a school, make sure that he was getting enough speech and language therapy, physio or OT. I didn’t feel too isolated but actually I hadn’t really come up for air and when I did I felt quite alone. I didn’t know anybody who had gone through anything similar and I didn’t really see other parents. At some point I found a very good group, mainly online, and we met up from time to time but it wasn’t really until I started meeting others through Spike’s special interests that I found lots more people who got it.

How was it having your second child?

I had reached a point where I had some mental space to think about another child. Although we were still in the process of getting Spike’s diagnosis, I’d reached a point of acceptance quite quickly and so if Oscar was going to be autistic that was fine, though I was alert to how he was developing. He was very different to Spike and him finding things easy felt weird and magical. He followed a more typical trajectory of milestones and it was a very different experience, a different delight. Oscar is now 9.

What were your expectations of what being a parent would be like?

I didn’t really have any idea what it would be like being a parent. My husband and I are slightly quirky only children and in some ways I expected to have slightly quirky children. I was excited to meet them and get to know them. I can remember having a picture in my mind of walking down the street with my child having a conversation. That took a long time to happen with Spike but I can remember the moment when it did happen and thinking, ‘Oh, we’re here.’ It was lovely to have that moment with Oscar, too and we reached it much more quickly than I expected! He’s a good talker.

How was school for Spike?

We had a relatively accommodating primary school and Spike had some good years, depending on the teacher. We had a lot of control over who worked with Spike so he was always really well supported. We were lucky that his year group were a wonderful bunch of children. Spike did a presentation to his class in year one about how things were for him and this helped his friends support him. It was always hard finding the balance between the academic focus in school and what we wanted to prioritise so Spike had time out of school. That’s a big reason why we asked the local authority for funding to home educate.

What’s your approach to home education?

Our starting point is always something he is interested in. We do project-based work and look for ways to bring in new information. We’re keeping our eye on the national curriculum and he’s a little behind his peers in some areas though he has some real strengths too. We work on Spike getting to know himself better, his communication, learning about the world and independence. We spend a lot of time out of the house because he loves travelling and learns well on his feet. He’s learning as much as he ever did, if not more. It’s a team effort with us, tutors and professional input.

In an ideal world I would like Spike to be at school but we can’t find the right place for him. There seems to be this idea that autistic children are either so-called ‘high functioning’ and can be integrated into a mainstream setting quite easily, or they have more substantial learning difficulties and higher support needs. I think a lot of autistic kids actually fall between those two. He needed more support than the mainstream schools could offer, but not at the expense of his education. It felt like we were being asked to choose.

How to do you talk to Spike about autism?

He knows he’s autistic, although we’re still refining his understanding of that. We’re introducing him to the idea that everybody has things they need support with and things they’re good at and he shares some strengths and weaknesses with the wider autistic community. It’s striking a balance between letting him know that if he’s struggling he can factor in the fact that he’s autistic, without saying that all the things he finds difficult are because he is autistic.

Could you talk a bit about Spike’s passions?

Spike always had things that he was very deeply interested in. It started with letters and numbers, then logos, idents. When he started liking the London Underground he had been quite anxious out of the home, and we saw that it was a way to broaden his horizons. He didn’t like the noise of trains but he also really wanted to be near them, and we wanted to help him work through this tension. It also gave us this shared experience of doing things together.

My husband and I usually take it in turns to go with Spike on a journey so we were spending every weekend going across London and it could be a bit lonely. I had heard that lots of autistic kids like trains but I couldn’t find any clubs. I tweeted saying, ‘Any other parents of autistic kids who like transport interested in getting together?’ and then I was inundated. I set up Transport Sparks – a social group for young autistic transport enthusiasts – about three years ago and it’s evolved into something brilliant.

When Spike meets up with a bunch of Transport Sparks they really connect with each other. They’re always so surprised that they have that meeting of minds and it’s also great for the parents to chat online and off.

Are there things that are challenging?

Spike’s anxiety permeates most aspects of his daily life and therefore our lives. That’s definitely more challenging for him than it is for us, but it’s difficult and affects the things we can do. We do a lot to try and mitigate it, but we can’t make it go away entirely. Spike does have some distressed or challenging behaviours from time to time. We’ve got better at supporting him and coping, ourselves, but it can be tough.

Has the way that you see the world changed since having Spike?

It’s a disgusting cliche, but I’m so much more empathetic than I used to be. I think it’s also made me feel more comfortable with uncertainty. I can’t see beyond a few months into the future, everything’s constantly under review, and that’s okay. It’s definitely made me more confident as a parent and self-reliant. There was a time early on when I thought the professionals had all the answers and now I realise that they are advisors and my husband and I know Spike best. We have to arrive at our own decisions. I hope I carried that forward with Oscar.

Are there things that Oscar finds difficult about having an autistic brother?

There are things which I don’t think he appreciates are, or could be perceived as, challenging – he doesn’t really see them that way. He’s found it more challenging as he’s got older. I’m starting to see that he finds it more difficult when, for example, Spike is very upset and he’s beginning to be concerned that he’s “adding to our problems” if he has difficulties. I have to be very clear that he can bring the good and the bad to us.

I noticed recently that Oscar was cross with himself for accidentally using negative language about autism and I felt bad that he was tying himself up in knots, but then also a little bit of me thought it was good that he was thinking about it and trying to choose his words carefully. I said as long as we think about our words, talk about them, we’ll be fine.

Is there a key thing you’ve learned about being a parent to Spike?

I remember a really clear moment of having a chat with someone in the playground and she asked, ‘What’s your son like?’ I gave her this terrible answer, like, ‘He struggles with this, he’s not very good at that.’ I burbled this all out at her and she didn’t really know what to say. It was a really clear moment of thinking that isn’t who Spike is to me. What am I saying? I’d adopted the language of the professionals. I thought I’m going to change the narrative and frame all of this differently, because it’s just not working for me.

I’m a rather self-conscious person and autism can be quite a loud, visible thing, but Spike has helped with that. He imitates transport noises and announcements when we’re out and if you’re feeling embarrassed or self-conscious about it, then other people pick up on that and everyone is tense. I’ve learned to just enjoy his enthusiasm and concentrate on him, and often people pick up on that positivity instead. Spike’s not particularly shy. He enjoys people and having conversations. We’ve ended up having so many more positive interactions with people than negative ones.

It took a while to unpack Spike’s way with words. He often uses scripting* and I would say 90% of that is meaningful – borrowed phrases used with intent. The rest is verbal stimming*, but even that is information. He’s letting me know he’s feeling a particular way. It’s all communication, if you’re paying attention.

You can find Anoushka here:

Blog: Spitting Yarn

Twitter @spittingyarn

Instagram: @spittingyarn

Transport Sparks Facebook group

*Definitions of some words:

Scripting is ‘the repetition of words, phrases, or sounds from other people’s speech.’

Stimming or self-stimulating behaviour ‘includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, or repetitive activities, speech or sounds.’

Playscheme

/ jess / 2 Comments

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

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The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Ben’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Ben is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Ben to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Ben has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Max went with Ben for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Ben is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Max will be allowed on it. There are some mutterings about insurance (or lack of it) for Max. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Ben to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Ben to school will be there on Monday morning, ready to take Max and Ben.

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I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Ben, and with enthusiasm for Max joining them. People like Ms A are the ones who brighten my days.

And so off they went! Ben went on his own some days, and Max joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

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One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Max couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Ben, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Ben’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Ben’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Max and Ben spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

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There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Ben can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Ben said that he enjoyed it, and Max asked if he can go every day with Ben next year. I hope so, my boy, I hope so.

 

 

Changing Places

/ jess / 2 Comments

As Ben gets older it seems to me that his life is a challenge of inclusion. As he get bigger and heavier, the places and buildings he can go and the types of transport he can use are restricted to those that are accessible by wheelchair. As the gap between his way of communicating and his talking peers widens, his ability to communicate with those around him becomes harder. Since he attends a special needs school, the amount of time he spends with non-disabled kids reduces.

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Ben is now pretty heavy, and quite long, and so it is becoming increasingly difficult for us to compensate for the lack of accessibility around us, a trend hastened by me injuring my back earlier this year. Where we would – without giving it a lot of thought – lift Ben, or his wheelchair, up to where he needed to be, or to see something otherwise obscured, we do so less often now. He is now often hoisted at home (a ceiling mounted hoist lifts him in a sling from, for example, his wheelchair to his bed) rather than us lifting him, something I find emotionally tricky.

Add in two other children, and the odd vomit or grumpy mood, and it can feel like it’s easier for us all to stay at home. We have to constantly nudge at the boundaries of what is expected of us and what we expect of ourselves – partly because it’s the right thing to do, partly because otherwise we all get unbelievably bored and tetchy.

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Last week we had left the car near Ben’s school in central London and so rather than one of us going to get it while the other stayed at home with kids, we went on a whole-family trip to retrieve it. Our local train station has lifts, as does a station reasonably close to his school. We looked like a small parade as we pushed a wheelchair and a buggy, carried a car seat, and Max dropped Lego on the floor. We walked through the City, past St Pauls Cathedral, got some lunch and hung out in a playground, and then drove home. It was fun! All of the kids liked being on the train, with each other. We liked doing it with all of them. We should do it more often!

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(Not possible to get a good photo of all of our kids)

But one of the things that really restricts where we can go as a family, and for how long, is whether there is a place to change Ben. I am going to attempt to talk about this clearly, without compromising Ben’s right to privacy.

Ben wears a pad which needs to be changed regularly. At home, we have ceiling hoists and two changing plinths (like a high padded bench) to do this on. We need to be able to lift him out of his wheelchair and lie him on a surface that will accommodate his full height. There is a name for places that have these facilities in public buildings: Changing Places. It’s not rocket science – they are places where people like Ben can get changed.

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(photo of one of the changing benches in our house, folded up)

Changing Places are not disabled toilets (though there are facilities that combine both functions). Disabled loos are just slightly larger-than-normal lavatories. We have used them, often, to change Ben in the absence of anywhere more suitable. This involves us laying the mat on the floor of the loo and lifting a heavy child down on to the mat. No-one wants to lie on the floor of a public toilet, so I think it’s obvious why this isn’t at all acceptable.

Changing Places are also not baby change facilities. Ben is the height of an average seven year old. He will not fit on a babychange unit (though we did this for years in the absence of anything more suitable).

Changing Places came about because a campaigning organisation with the same name has relentlessly lobbied businesses and public institutions to install appropriate facilities for disabled people. They have had some success – we can now plan our drive to Cornwall using their website, which means Ben can be changed appropriately in two service stations en route.

There are five Changing Places in central London. Clearly that’s better than none, which was the case a few years ago, but it makes it pretty unlikely that we are near one on any given outing. Which means our outings can only last a few hours. Can you imagine if you were told that, in the middle of a capital city, your nearest loo was over a mile away? I’ve had three kids and drink a lot of tea so that would spell absolute disaster for me.

And it’s not just public buildings or businesses that are failing here, it’s also hospitals. Our local hospital, where Ben has appointments at least four times a year, often more, has nowhere for Ben to be changed – awkward when waiting times mean we are there for two hours, and then will have an hour journey to take Ben to school. Nor indeed any ability to weigh him beyond me carrying him while standing on some scales and then the nurse subtracting my weight. I did this for years but it is no longer feasible. Nor do they have any way of measuring his height, and therefore calculating his BMI. This is pretty core information that would be really helpful in, say, a discussion with a gastroenterologist.

The social model of disability tells us that disabled people are disabled more by their environment than by their own condition. True inclusion means creating an environment that allows disabled people to participate in society: we took a family trip past St Pauls Cathedral because two stations have been adapted to allow Ben in his wheelchair to travel on the train. The length of our trip is then determined by whether we can change him. It’s not Ben’s disability that’s the problem – it’s the lack of appropriate facilities.

I have no particular desire to discuss the toileting habits of any of my children, but to not talk about what Ben, and kids and adults like him, need in order to be comfortable is to perpetuate the current situation which encourages exclusion. Providing appropriate facilities for disabled people is intrinsically entwined with avoiding isolation. It’s not a question of optional luxury, it’s an issue of basic dignity and social justice.

 

School bus

/ jess / 3 Comments

Ben is now at school full time. He goes to the special primary school in our borough so we have to drive him there which takes 20-30mins.

Most children who go to the school get the school bus. I spoke to various people about this before the summer and was given the impression that the school bus is all or nothing – every morning and afternoon or not at all. I was grumpy about it on a day when I happened to be interviewed for a film about parenting children with special educational needs. I grumbled at length about the inflexibility of such systems.

I applied for transport assistance, thinking that I’d see what happened and we didn’t have to take it if we didn’t want to. I was told we could pretend we had physio every afternoon so Ben couldn’t get the bus. A woman who works for the transport bit of the council then came to visit us and assess Ben’s needs. She was really friendly, confirmed Ben would be offered a place on the bus due to his disability, and said it was totally up to us how often and when he used it. All of the scare stories about the inflexibility of the bus were totally unfounded!

We then couldn’t decide what to do because Ben is so young and time to fit in his breakfast in the morning is already limited (the bus arrives half an hour earlier than if I drive him straight there). I enjoyed taking and collecting him when he had gone to school 2.5 days a week last year and it meant I got to know the staff and kids at the school. But doing the school run for an hour every morning and afternoon five days a week is a lot of time – time that could be spent with my other child, or working, or making a dent on the Ben-admin/washing/massive piles of lego in my sitting room.

We came up with a complicated rota of Ben getting the bus on various mornings and afternoons after an initial few weeks of me driving him. Everyone nodded when I told them, looking kindly at me like I was nuts. We realised that no-one, including us and more importantly Ben, would be able to keep track, so we settled on Ben getting the bus each morning and being collected every afternoon.

On the first morning, we were ready at the front window looking for the bus – we had been given strict instructions that the bus would wait for 3 minutes from our allotted pick-up time but no more. We’d told Ben what was happening and he was totally fine. He was smiley and relaxed.

While waiting, James and I had some small misunderstanding about something and I burst in to tears. I found the whole thing so emotional – my little boy going all on his own on the bus with people he’d never met before. And Ben’s school bus is, by definition, full of disabled children. Happy, friendly, lovely kids, but there’s no getting away from your child being disabled in that context.

Non-disabled four year olds don’t get buses to school, they potter round the corner to the local primary. In fact hardly any British city kids get organised buses to school; there is no culture of school buses like I have seen in American films. (Aside: construction companies in Qatar buy old American school buses, so when we lived in Doha you would often be waiting at traffic lights next to big yellow buses with SPRINGTOWN HIGH SCHOOL written on the side, which were full of adult migrant labourers being driven to work.)

Then the bus arrived and we met Omar, the driver. Ben got lifted up on a platform on the back of a bus, and was all smiles as his wheelchair was secured. Then he was gone. Of course I called the school mid-morning and they said he had arrived happy.

That routine lasted three days.

On the fourth day we repeated everything as normal, Ben smiled at Omar, and then his bottom lip appeared in direct correlation to the height of the wheelchair lift. Ben’s bottom lip is legendary – he has used it to great effect ever since he was a little baby. By the time he was in the bus he was crying and wouldn’t open his eyes to say goodbye to me. ‘Ben’s very sad’, said Max.

So now each morning Ben is happy while we all wait for the bus. The bus arrives and Ben smiles at Omar. Then he sticks his bottom lip out as he gets in to the bus and cries as it leaves. Unless the lady who accompanies the children sings to him, in which case he allows himself to open his eyes a tiny bit and marginally retract his lip. As soon as she stops, off he goes again with the tears. It’s all heartbreaking.

I keep asking the bus staff how he was during the journey and each day they say he stopped crying as soon as they turned the corner. Every day each child is greeted by the headteacher or deputy head on their way in to school, and every morning they say he was happy. We collect him each afternoon and his class teacher says he was cheerful.

So I guess he’s okay and we all carry on until he gets used to the idea of leaving us on the bus. But in the meantime my heartstrings are taut and in danger of snapping.