Playscheme

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 Sam’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 Sam 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 Sam 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 Sam 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 Eli went with Sam 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. Sam 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 Eli will be allowed on it. There are some mutterings about insurance (or lack of it) for Eli. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Sam 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 Sam to school will be there on Monday morning, ready to take Eli and Sam.

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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 Sam, and with enthusiasm for Eli joining them. People like Ms A are the ones who brighten my days.

And so off they went! Sam went on his own some days, and Eli 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 Eli couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Sam, 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 Sam’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Sam’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 Eli and Sam 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 Sam 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. Sam said that he enjoyed it, and Eli asked if he can go every day with Sam next year. I hope so, my boy, I hope so.

 

 

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The Perils of the Internet

Like practically everyone in the developed world, I am trying to be more thoughtful about how much time I spend on my phone and on social media. I try, with mixed success, to not spend time on my phone around the kids, and to avoid disappearing into a blackhole of news about people I don’t know. Every once in a while I think about deleting the apps. Sometimes I actually do it, but I can’t quite resist because those clever engineers know what they’re doing and I enjoy the pretty pictures and surreptitious snooping.

But it’s also because I get genuinely useful information and a sense of solidarity from the social media I use. It’s brilliant to be able to make connections with disabled people, to learn more about their experiences and their politics. It’s great to be able to talk to other parents of disabled children. I find out about events, equipment and approaches, from organisations and individuals. I think there is huge value in sharing experiences, hence this blog!

But once you find yourself in this little corner of the internet, there are many stories written by parents of disabled children, and it can be uncertain ground. There is a fine line between sharing experiences and oversharing information about a child who may not be able to consent.

I question myself a lot about what it is okay to write about and what is not, particularly when I read things which I think are inappropriate – perhaps because they show photos which I wouldn’t want to see of me as a child on the internet, or because they dwell on how difficult their life is because they have a disabled child.

I worry that when that child is an adult they will be sad to read what was written about them. I am sometimes concerned that the parent’s account is disrespectful to disabled adults with the same impairments as their child. I am by no means beyond reproach – I am sure I have shared things that I thought were okay at the time, but would now not. Sometimes I think that maybe I shouldn’t be sharing anything at all, but I keep coming back to my conviction that as long as disabled children and adults are perceived as ‘other’ by much of society, there is value in attempting to puncture ignorance with our stories. I try my best to respect all of my children by carefully editing what I share (and perhaps I should share more photos of myself…).

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What I am particularly drawn to are stories about disabled children overcoming communication difficulties, and adults that use Alternative and Augmentative Communication (AAC). It is inspiring to see people who have found the communication system that works for them, and are able to say what they want to say. It’s encouraging to see that methodical, consistent use of AAC can pay off – that children who were unable to communicate have a viable way to do so.

If there’s one thing these kinds of internet stories are good at, it’s celebrating the role of the parent, most likely the mother, in facilitating their disabled child’s access to AAC. Often the mother has fought for the right device, has pushed those surrounding the child to presume competence, has homeschooled the kids when the schools weren’t good enough, has modelled AAC language to their child consistently. The kid is therefore doing really well (possibly writing messages saying how grateful they are to their mother).

And, obviously, these stories are amazing. I want Sam to be the subject of these stories – celebratory, happy stories featuring quotes from a child that found it tricky to use expressive language.

So, does Sam have the right AAC system? Is he getting the right education? Is he getting enough specialist input? Should I be homeschooling him? Am I, personally, doing enough to encourage literacy? Are we modelling enough? Are we doing it every day, in every place, at every opportunity? Because if Sam doesn’t become expressively literate, will it be my fault?

These are the kind of myopic, self-obsessed thoughts I have as I peruse Facebook and it’s not that relaxing. I know I don’t want to homeschool any of my kids – I taught an English camp for Spanish kids when I was younger and I learnt from that summer that I am a terrible teacher. I shouted a lot, particularly when it looked like the kids were enjoying themselves too much. I think there are all sorts of advantages to going to school beyond literacy. But still. The pressure. My god, the pressure.

(Sidenote: if crafting expertise was crucial to teaching literacy, I’d be all over it. Gratuitous World Book Day photo:   )

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And then, occasionally I get a moment of thinking we’re not failing. We’re doing our best, and maybe we’re actually doing okay.

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Today Sam was home from school because he has yet another cold (don’t get me started on the sickness count in this house this winter, it is beyond tedious). Stella was with us, and I was pottering around trying to get stuff done between the nose wiping and Calpol distribution. Stella had pulled Sam’s YES and NO symbols off the velcro on the back of his chair, and she was standing next to him holding them up, saying ‘Yes, Sam. No, Sam’.

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This is how Sam answers questions – he looks at yes and no symbols. She is doing this because two year olds copy what they see around them. She has noticed our modelling and she is using AAC with her brother. It’s a little bit magical. We must be doing something right.

Where kids go to school

Eli started school in September. It has made me think a lot about how we educate kids with disabilities.

Eli’s school is a short walk away from home. It is a typical inner city state primary. Unremarkable for being similar to lots of other schools in London. Remarkable for being like many other schools which are also educating loads of kids with different needs, languages and backgrounds. I have been consistently impressed by how they have calmly settled thirty new kids into school and appear to be totally in control, while I struggle to keep three kids in any kind of order at home. Eli has been learning at a furious pace – generally uncommunicative about his day, he’ll then slip in some comment about how to spell a word, or write something, or tell us about numbers in a way that shows he is really soaking up the things he is being taught.

One of the reasons I liked the school when we originally looked round was because it seemed to accommodate difference well – it has specialist provision for pupils with autism, it has a dyslexia centre. It has the kind of diversity of kids you would expect of an inner London school. I believe these things are important.

(Sidenote: a teaching assistant who we loved at Sam’s old school once told me she chose her non-disabled daughter’s school based on it having a lot of kids with special educational needs and being well known for inclusion. People like that make the world a bit brighter.)

Out of the classroom, and purely by chance, it turns out we live on the same road as two other kids in Eli’s year and as we all troop up and down the hill every morning we have got to know each other. So within weeks of starting school Eli was being invited over, and James and I were getting to know other parents. We bump into parents from the school in other local places and stop for a chat. Apart from this being really fun for Eli, it has meant us being able to ask for favours; when Sam was ill, another mum collected Eli for me and brought him home. This is new to us and it’s brilliantly straightforward.

I was worried about Eli starting at a school where no-one knew Sam. Of course I was wrong to be concerned – within the first few weeks he had described his family with accompanying photos: ‘Me and Sam are lying in bed. Sam’s disabled and my bed isn’t that big so he sleeps downstairs’. Within the first half term the whole class had watched videos of Paralympic athletes and discussed overcoming adversity. As the teachers said at the time, the kids were too busy being impressed with Jonny Peacock’s speed to notice his lack of leg. Eli has the confidence to explain Sam’s disability when he needs or wants to and he knows it isn’t negative or something to be self-conscious about, it just is.

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So far Eli’s school is everything we hoped it would be. It is enabling the small ordinary interactions of living in a community. And in that respect, it is really – and unavoidably – different to Sam’s school experience.

Sam goes to school five miles away. It’s a really good school, and he’s there because we think it’s the best school for him right now. It takes about an hour each way for him to travel there and back every day. That is not that unusual – kids at Sam’s school come from all over London, in every direction.

James, a carer or I take and collect Sam two days a week. We chose to do that, so we see his classroom and his classmates, and have chats with his teachers and assistants. The other days he gets a school bus, like almost every other child in the school since. We rarely bump into other parents at the school.

Years ago, we looked at Eli’s current school as a school for Sam. They were willing to consider it, but he would have been the only physically disabled child in the school and they had no track record of teaching a child like him. We decided it was better for Sam to go to school further away that had proven expertise in teaching children like Sam, in helping them to communicate and in maximising their potential.

We think this was the right decision for Sam, but it means we removed him from his local community. It is only through our efforts to engage him in local activities outside school (and my reliably local family) that he will have any sense of belonging in our little bit of south London. As I have written about before, life is all about human connections and this is more important, not less, for children with disability for whom interacting is challenging.

In some ways this is where Eli comes in, as an unwitting but ever reliable social conduit. He invites his friends over, and then Sam is surrounded by boys playing with helicopters. Those boys, and their mums, dads, sisters and brothers,meet Sam and then recognise him in the street. They ask questions and get to know him. We take Sam to the Christmas Fair at Eli’s school, where he meets Eli’s teachers, other parents and kids, and really enjoys the Salvation Army brass band (obviously).

As ever, the path of inclusion never runs smooth, and Sam couldn’t meet Santa at the fair because the grotto was up two small flights of steps. But never mind – Eli told Santa he needed a present for his brother, who is disabled, and wasn’t there, and Santa handed it over. They both got books about the Lego movie so we are all now clear about exactly why Vitruvius (not that one) is so amazing.

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There’s an argument to be made that it makes sense to group children who need specialist input together (and no-one appreciates the expertise of really specialist teachers, speech and language therapists and technologists more than me). That it makes sense to have a critical mass of similar-ish kids in a school together. It’s kind of obvious, and I have sympathy with this point of view, not least because kids like to be with their peers and for some children, perhaps being the sole physically disabled kid in a school is not necessarily that bolstering an environment. I think it works well for Sam to be somewhere with kids that communicate like him, and professionals experienced in teaching kids like him.

It’s not good enough that at 8am every morning hundreds of children with special educational needs are being bussed around the city, sitting in traffic jams while they try to get an education, driving past the local kids who could have been their friends. It’s not good enough that the families of the kids on the buses don’t get to know local parents. How otherwise are they supposed to forge the kind of friendships that are based on mutual understanding of how you feel at 9am having used the cross voice at least five times to ask your child to put on their shoes/not get run over by a motorbike/stop walking on that bit of wall, when you have run to school as you tried to keep up with your child scooting too fast down a hill, and are now wondering if someone is going to give you a medal for remembering the bookbag?

Obviously, calmly loading your older child on to a bus arriving at your house at 8.15am can sound attractive in comparison to the 9am chaos, but is it right? Is it really the right way to organise an education system? Is it fair for disabled kids? And are we really doing right by our non-disabled children?

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(Unconnected, cheerful picture)

How we learn to talk (part two)

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Recently I complained that Eli talks too much. I caught myself saying it twice, to two different people, in one week. Granted, James was away and I was really feeling the intensity of being the primary carer of all three kids, but what was I thinking?

Eli is, in the nicest possible way, a chatterbox. Some days he will barely stop talking for hours at a time. It’s a charming mixture of questions, statements and analysis of the varying powers of superheroes.

Eli was relatively slow to talk; he just said ‘oh no’ repeatedly for months and as he turned two the health visitor was a bit concerned about his lack of speech. I wasn’t worried. I had spent hours with speech and language therapists with Sam and so knew something of the basics of learning language. I could tell Eli knew loads of words and understood what we told him. He made loads of sounds. I had a feeling he was just biding his time until he started talking.

At two-and-a-bit he started saying more words. Within a couple of weeks he was putting words together. And by the end of the month he had three-word sentences. It was like a miracle, like you could see his brain working and his body co-ordinating itself with an ease and fluidity that was beautiful to watch and hear.

Since Sam will probably never talk, I promised myself that I wouldn’t take it for granted. And I haven’t – there have been numerous occasions when we have been so very grateful for Eli’s ability to tell us what the matter is when he’s ill or what happened at nursery that day.

Meanwhile there have been many times when we have been so very sad that Sam can’t tell us what the matter is, or what he has done that day. We find ways round it by school telling us each day what he has done, and recording messages on a button that goes to and fro with him, but it’s no substitute for independent communication and it’s a clunky way to converse.

We, and his school, are trying our best to give Sam the means to ‘talk’. We continue to model his PODD book with him (a communication book with lots of symbols to represent vocab), and give him access to his eyegaze computer regularly. When he returned to school after Easter, his carer/nanny printed out photos for him to take to school of all the things he had done over the holiday. I programmed new pages on his computer so he could use his eyes to describe what he had been up to (with photos) for his friends and teachers. (SO proud of myself for managing to navigate the software to do this, with only a couple of exasperating moments when I felt like chucking the computer out the window).

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Sam loved all of it – he enjoyed showing people photos of Eli squashing him in the park, and telling them about our easter egg hunt.

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But these things are manipulated by us. We choose which photos to include and which anecdotes to tell. Sam can’t tell people what HE wants to about his holiday he can only share one of the moments we chose to include. Who knows whether we have included the bits he most enjoyed? Yesterday we were talking about when we all visited an outdoor exhibition of massive light sculptures and Eli’s best, most important memory was of the Smarties Grandpa gave him, rather than any of the sculptures. Kids experience the world differently to adults, and often remember the bits we think are incidental.

Or we (adults) don’t realise what kids want to do. When Eli is climbing a tree, Sam will make complaining noises until we ask him if he wants to climb the tree? He then looks at the ‘Yes’ symbol on the arm of his wheelchair, and so we take him out and lift him up into the branches. A year ago he wouldn’t have been able to communicate this clearly something we hadn’t thought of. Or perhaps we weren’t able to interpret what he was trying to tell us.

We continue to hope we can give Sam the means to express what HE wants to say, rather than what we think he wants to say, and he is making progress with the ways he has available.

Each week at school Sam helps create a sentence and they work on the sentence each day, putting the words in the right order. On one of the first days back at school this term, staff in Sam’s classroom navigated him to the Places page of his PODD book. He had to choose the place to complete the sentence ‘I went to the …’ and through careful yes/no answers as he worked his way through the various symbols with an assistant he chose Library: I went to the library.*

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School wondered if he really meant library. We hadn’t mentioned going to the library in our various messages to school. Maybe he was confused, or hadn’t really meant library. After all, his communication can be hard to interpret.

But HE HAD GONE TO THE LIBRARY. The day before! So he had told his class something we hadn’t!

Before Eli started talking it was all in his head, he just had to work out how to say it all so we would understand. Sam clearly has so much to say, but no reliable way to say it. In some ways this makes me sad. In many ways it makes me anxious – it is our job (with various professionals) to help him find ways to talk to us and I feel the weight of the responsibility.

But mainly I feel hopeful. Sam has started to use the communication systems we are providing and has begun to talk independently. It will take time, but he’s making progress. He went to the library!

 

How we learn to talk – part one is here

* Note how many symbols there are on this page, which is one of many in the PODD book. Imagine the skill needed to identify which symbol you want on that page and then communicate it to the person you are talking to using only your eyes. Imagine if you got distracted or confused midway through and needed to start again.

New School

We are coming out of the post-surgery haze. Having come out of hospital one week after the operation, Sam started at a new school exactly two weeks after surgery. We had feared that he wouldn’t be well enough and might miss the beginning of term, so it felt like a huge win to get him there in one (slightly bruised, stitched together) piece.

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James has taken a significant chunk of time off work so we have had the luxury of introducing Sam to school slowly, calmly, with both of us around to make it work. We have been able to take him in together, learning how to drive into central London without killing a cyclist or getting embedded in a stationary traffic jam, and pick him up early. Eli has come in with us and got to know the new school. We have all been able to meet the staff and see where Sam spends his day. It’s all been significantly less stressful than I anticipated.

It’s not all been plain sailing. Until earlier this week Sam had periods of profound unhappiness which couldn’t be resolved with paracetamol, or ibuprofen, or TV, or books, or lying in bed. There are few things more sapping than spending four hours with a child who is really unhappy and being apparently incapable of making things better. Maybe he had a headache (there is, after all, stuff in there that wasn’t there before), or a tummy ache (ditto), or the wounds are uncomfortable, or he’s just really bored of being with us at home. Not fun. But if someone told me pre-surgery that Sam would start at school two weeks later and be largely cheerful (or at least not miserable), I would have taken it.

He’s now done two weeks and he isn’t just putting up with school, he is really happy. As we walked in on the first day, Sam was all smiles. He has loved school thus far and he knew he would enjoy it, and he was right. That is partly because he likes learning and the variety of a school day, and partly because it’s an excellent school. James and I were far more nervous than Sam, but the staff are so obviously capable, receptive and skilled that we have had no choice but to happily leave Sam there and go for lunch in Clerkenwell or take Eli to the Museum of London, again.

I’ve described before the importance, and marvelousness, of one’s disabled child going to a really good school. We have been fortunate enough to find two. Sam has moved schools because we, and the professionals working with him, felt he would benefit from more specific and specialist input so he has moved from a school for children with a range of special educational needs to a school for physically disabled children. He, and we, loved his previous school and were sad to leave. We all made very good friends there and Sam was lucky to be taught and supported by lovely, skilled people for two years. Saying goodbye to them all involved a lot of weeping, for once not just by me.

As part of leaving, Sam got his last school report. We spend a lot of time reading expert reports about Sam that are, necessarily, factual and focus on problems. Sam’s report was the exact opposite of this – hundreds of words of enthusiasm and celebration. It was a joy to read and was written evidence of the can-do attitude of his lovely teacher. Forgive me as I quote some of my favourite bits – comments that could only be made by people who have taken time to really get to know Sam and see past the immediate obstacles to communication and learning:

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‘Sam is an extremely popular member of class and throughout the school community. Children and adults are drawn to Sam’s fun friendly nature and positive attitude.’

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 ‘One of Sam’s many lovely qualities is his empathy. If another pupil receives praise or is celebrated for an achievement Sam will start to beam and become very excited.’

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 ‘Sam has fantastic understanding of the spoken word and can communicate with adults using his communication board, his PODD book, symbols or just by gesture.’

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 ‘Sam has really flourished with phonics activities this year, and with the continued support he receives from his family he has excelled in this area. Sam can now recognise a variety of letter formations and can confidently identify their sound. For example when presenting Sam with a choice of four sounds: ‘igh’, ‘th’, ‘er’, ‘ue’, Sam can confidently read the letters and communicate this by eye pointing.’

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 ‘At the beginning of the year Sam required support at the trunk to sit independently. Now in soft play when he is propped up against the slide he can sit cross legged completely on his own for up to two minutes! This has been such great progress and we are all really impressed with how hard Sam works in these sessions.’

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We are incredibly proud of him, so pleased he’s had such a brilliant experience of school so far and so thankful for such talented teachers and assistants. What a geek! Like mother (and father), like son.

 

A trip to Westminster

I didn’t realise quite what a difference it would make to our lives once Sam was at school. We’re now coming to the end of his first year of full-time school, and it’s been bloody marvellous. The thing about having a very small disabled child, who’s at home a lot, is that you are responsible for every almost every aspect of their lives; what they’re doing, who they’re doing it with, what they’re learning (or not), how much variety they have in their days. Even with the aspects that aren’t entirely down to you, you are still the one providing taxi services or co-ordinating appointments, having conversations and arranging outings. It’s a lot of pressure and hard not to take things personally.

If you are lucky enough to get your child into a really good school (via interaction with your local Special Educational Needs department, which is bound to be stressful), a significant chunk of responsibility is lifted from your shoulders and you are handed back whole swathes of time. 5-6 hours a day to be precise.

Of course there’s still a lot to do and arrange. And there are school holidays to fill. But every day during term time, your child is with people who are teaching them, playing with them, taking them to go swimming and to other interesting places.

Sam’s school celebrated the election of a new parliament in May by going on a school trip to Parliament for all of the children who are part of the MOVE programme, which is all about integrating physical tasks, goals and skills in to the school day and is designed to involve the expertise of everyone who works with the children – parents, teachers, therapists, classroom assistants and others.

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Sam’s MOVE goals focus on him sitting unsupported and standing for short periods of time. Being part of the programme means practicing these skills every day at various points throughout the day. The idea is to go beyond just working on this in designated physiotherapy sessions. It a great idea, and Sam’s ability to sit with less support has improved noticeably over the last 6-9 months.

The outing to Westminster was to celebrate the achievements of all of these kids, and where better to take them for a treat than to the heart of power? The place that, for a group of eleven disabled children, ultimately determines so much of their lives, from education and transport, to benefits and healthcare.

If I decided to take Sam on a trip to Westminster, it would be a big deal and I would spend a lot of time planning and fretting. The idea of taking eleven children in wheelchairs, eleven staff and all of the necessary bags on the tube, in order to make an appointment time with an important person would send me into some kind of collapse. But that’s what the school did – cheerfully and enthusiastically. Presumably somebody was planning and worrying, but they gave the impression of easy calm. They even, in the spirit of MOVE, got all of the kids out of their wheelchairs on the tube to practise sitting on seats. Brilliant! Nuts!

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I met the party at the Houses of Parliament and we went though security – all lovely slopey ramps, friendly frisking and smiles for the army of wheelchairs. We went through to New Palace Yard where we were met by Neil Coyle, the very newly-elected MP in whose constituency Sam’s school sits. He’d only had a couple of days to familiarise himself with the workings of the Houses of Parliament but he got us in, and happily chatted to us all, kids included. You could not meet a more welcoming MP.

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There’s a video here.

I love the idea of politicians and their colleagues coming across these kids as they walk through the Palace of Westminster. I got by far the best bit of an ambitious day – just swanning in for the photos in front of Big Ben. What a luxury for me – none of the anxiety about logistics or whether Sam would be happy, and all of the fun of the adventure. But mainly, lucky Sam!

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(Surprisingly hard to fit my large head, Sam’s wobbly head and Big Ben in a selfie.)

Hobbies

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It is tricky for us to encourage Sam’s hobbies. Or find fun stuff for him to do that isn’t watching an iPad or being read a book. Activities often feel like hard work for not that much reward. We have had some successes: swimming and stories at the Horniman Museum in particular.

Over the last couple of months we have been trying two new activities with Sam regularly – music on Mondays and trampolining on Wednesdays.

Music is the very best kind of therapy – therapeutic input with specific goals in a trojan horse of fun! I’m certain Sam has no idea he’s working. I wrote about us starting music therapy here. Since then Sam has got over his upset at each session finishing and is happy to arrive and leave each week. We have just had a review with his therapist, who I will call C, where she showed me videos of some of the sessions and summarised how they were getting on so far.

We rarely have reviews that are as wonderfully positive as this. You could be forgiven for thinking Sam is some kind of musical genius when you talk to C. Her feedback is full of things like:

Sam has been extremely motivated to participate and shown himself to be very sensitive and musical, working hard but also sharing a clear sense of his fun character‘.

And:

‘On a small number of occasions Sam has also very clearly, melodically, and beautifully, sung in response to the music. This is very fragmentary at present and it is likely to be an evoked – rather than consciously directed – response. However, the musicality and sensitivity of this illustrates clear musical understanding.’

In the videos I watched it was striking that during long periods (i.e. up to a minute) Sam was listening intently to music being played and was totally still. This is unusual – Sam is nearly always moving some part of his body. When he did try to participate he managed, despite all of the physical challenges. I saw him bashing a drum at the right time, and kicking a tambourine to a beat. Not always, but often. It is all hugely exciting and Sam is so obviously engaged.

Meanwhile, on Wednesdays we have been going to trampolining before the school day starts, on the amazing big trampoline that is hidden beneath the floor of Sam’s school hall. Sam was pretty relaxed from the beginning, but has been enjoying it more and more each week that we go. He clearly now knows what to expect and is really comfortable with the instructor, who I’ll call D. D has been bouncing higher and doing ever more bold moves as Sam lies on the trampoline surface and is flung around.

Having been invited to come along by the staff at school, Eli has taken longer to engage, preferring to play with the PE equipment in the hall rather than venture on to the trampoline. It’s not only disabled kids that need time to acclimatise and build up their confidence. Today, finally, he totally embraced the concept and D helped him to bounce and lie next to Sam. If finding successful activities for Sam is difficult, finding things that both Sam and Eli enjoy at the same time is THE HOLY GRAIL. I actually got cheek-ache from smiling so much (video below).

Similar to music, the trampolining is doing all sorts of things for Sam beyond letting him have fun. Being bounced around is excellent vestibular input (to the structures within the ear which provide information about balance, equilibrium and spatial orientation) for a child that doesn’t necessarily roll down hills or go down slides. It gives unique feedback through a body that can’t communicate with itself very well, and is physical therapy in disguise – Sam clearly tries to lift his head and arms throughout the sessions.

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This is what happens when the stars align and you find something Sam’s interested in, at a time that suits him, in a venue that works, with a therapist or instructor who is really good at what they do. C is really careful – to the untrained eye she appears to be sitting in a room helping Sam play a drum. To a skilled eye, she is getting Sam in the right position, making up a song that interests him, adjusting the timing so he can get organised to move his hand to the beat, positioning the drum where he can bash it, constantly testing and adjusting to get the best out of him. D is filled with enthusiasm and has gently worked out what Sam likes and included Eli as much as she can. She works at a pace dictated by Sam, and is unfailingly pleased with every bit of feedback Sam gives her.

It’s all totally bloody brilliant. I couldn’t be prouder of these boys

(Not the best quality photos – iPhone cameras not happy with institutional lighting and bouncing.)

School bus

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Sam 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 Sam couldn’t get the bus. A woman who works for the transport bit of the council then came to visit us and assess Sam’s needs. She was really friendly, confirmed Sam 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 Sam 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 Sam-admin/washing/massive piles of lego in my sitting room.

We came up with a complicated rota of Sam 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 Sam, would be able to keep track, so we settled on Sam 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 Sam 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 Sam’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. Sam 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, Sam smiled at Omar, and then his bottom lip appeared in direct correlation to the height of the wheelchair lift. Sam’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. ‘Sam’s very sad’, said Eli.

So now each morning Sam is happy while we all wait for the bus. The bus arrives and Sam 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.

Inquiry: failing disabled children

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I wrote last week about our experience of getting Sam in to a nursery. It was stressful but in the grand scheme of things we were incredibly lucky.

Sam has been to that nursery for 2-3 days a week, year-round, for almost four years. Since last September he has spent 2.5 days a week at a local special needs primary school and then two days a week at the mainstream nursery. He is still a nursery age child so the time at school counts as ‘nursery’ from an educational perspective.

If we all just pretend for a moment that things are simple and linear, it is possible to track a path from Sam in 2010/11 who was startled by all loud noises, uncomfortable around young children and wary of new people to Sam in 2013/14 who took ONE WEEK to settle in to a new school, copes admirably with loud, unpredictable classmates and has made trusting relationships with staff. I don’t think that would have happened if Sam had spent the last four years at home with me, and I think a large portion of his development (particularly social) is down to nursery. Meanwhile, of course, I’ve been able to work a bit and have maintained some semblance of sanity while having some income.

We just got Sam’s first school report which makes me want to burst with pride. I won’t bore you with the full transcript, but two bits that illustrate my point here are:

‘Sam took no time to settle in and establish himself as a very popular young man! He quickly adjusted to his new school and new routine. He built really positive relationship with the adults in his class and it has been wonderful to see him make so much progress this year.’

‘Sam has participated in choir club together with some children from the local mainstream school, and really enjoys being with the other children. He is extremely popular with them too and is always the first to be picked by them for partner games. Sam clearly loves this and everyone comments on how happy he is in choir.’ [NB by definition, choir involves noise]

Sam has so far had a broadly positive experience of childcare and education but at a national level the picture still seems bleak.

The report of a Parliamentary Inquiry into childcare for disabled children was published this week and is full of extraordinary, but unsurprising, statistics about the difficulty, cost and inadequacy of childcare:

“Despite the huge progress made in creating a national system of childcare provision in the past two decades, the evidence received by this Inquiry clearly demonstrates that national policy has failed to create a childcare system that meets the needs of disabled children and their families. “

Some stats:

Only 16% of mothers of disabled children work compared with 61% of all mothers.

72% of families with disabled children cut back or give up work because of childcare problems.

86% of families of disabled children who use childcare pay above average

33% of parent carers don’t use childcare because staff don’t have the right experience.

41% of families with disabled children age 3 and 4 can’t access 15hr free early education offer (that theoretically all children are entitled to)

Behind all those statistics are real parents trying to go to work and bright, beautiful disabled children who deserve the opportunity to experience everything that good childcare has to offer.

The Inquiry took oral evidence from a number of mothers of disabled children. One of the striking things is the inconsistency of provision. I have crossed paths with Stacie Lewis a number of times – we live in neighbouring boroughs in south London, our children are close in age and have a similar level and type of disability. But her experience was totally different from mine. She went to more than 50 childminders and nurseries before she found one that would take her daughter.

The inevitable problem with providing good childcare for disabled children is it is more expensive than if the child were not disabled. They need more support, more staff hours, more meetings with other professionals, better trained staff, adapted equipment and buildings. It is no coincidence that Sam’s nursery is run by our local authority – private nurseries are unlikely (and generally don’t) take on children who will undermine their profit margin.

Our local authority ‘restructured’ Sam’s nursery last year which involved a new staffing structure and everyone having to reapply for their jobs. I wrote a number of letters expressing concern about the effect this would have on children like Sam which the council essentially ignored and so inevitably, come the summer, all of the staff who directly knew Sam had left. We kept Sam at home for a few weeks before we felt confident that he could return and be safely cared for. He then had to get to know new staff, who had very little training in Sam’s particular needs.

I’m glad we persevered – both in terms of making it work with new staff, and in fighting with our local authority for seven months so Sam could continue to go to the nursery when he started school part-time. Some of the children have known Sam for years now – they bring him toys to play with and read him books. The staff (who survived the restructure) know our family and supported us in getting Sam in to school early. There is real value in Sam being part of this and it is incredibly disappointing that thousands of disabled children are being denied such opportunities.