Sam is 7!

Sam is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Sam through his feeding tube.

With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” But it’s true – I am genuinely surprised that we have been parents for seven years and that Sam is so big and tall.

As with all recent birthdays, James made a Sam-themed video of the past year and we watched it with our family, projected on to the wall. I would recommend this as a way not so much of celebrating the child’s birthday, though Sam and Eli enjoy seeing themselves, but more as a way of congratulating oneself on another year of parenting. It is heartening to see how much children have changed and grown over the year, how much you have done with them, and ultimately how justified you are in feeling so tired (excerpt from birthday video below).

The other thing that we realise when we (James) make these videos is that there is always way too much material. We have done too much fun stuff and taken too many photos and videos to fit into one short film. It makes obvious that Sam is living a full life, with variety and fun, surrounded by loving family.

Just after Sam’s birthday he had an appointment at our local rehabilitation centre where wheelchair services, assistive technology and other helpful services are based. There are always all sorts of disabled people coming in and out for appointments. I was sitting in reception with Sam and Stella, waiting to be called. Stella was a bit grumpy because she hadn’t yet had her morning bottle of milk, Sam was happy watching a screen showing footage from four security cameras. A lady in a wheelchair was pushed close to us (and I have written that in the passive deliberately, because the person pushing didn’t ask her where she wanted to wait). She was an older lady, I would guess in her seventies, immaculately dressed and made up. She smiled at us and after a few moments said (as is common):

“You’ve got your hands full!”

I smiled and we had a brief chat about how old the kids were, how cute Stella was, how much she liked milk. Then the lady asked, as she looked at Sam:

“Is he able to go to school?”

“Of course,” I said. “He goes to a brilliant school which he loves, don’t you Sam. We’re just here for an appointment.”

I could see the pity-look appearing so I was even more positive than normal about both Sam and his school. But as she was leaving she said:

“It’s so hard for these handicapped children. So hard for their families. I feel so sorry for them.”

It was one of those times when I felt like I didn’t have the words to be able to explain to her what our world is like, what Sam’s life is like, how we (try to) treat him. I have no idea how or why she uses a wheelchair, or how old she was when she first used it, but clearly she has lived a different experience.

It’s impossible in passing conversations like this to say all I want to, but later I felt so sad that she assumed Sam didn’t go to school, that his life is somehow unbearably hard, that it’s okay to talk about him like that right in front of him. Clearly being disabled in some way doesn’t automatically educate you in how to treat disabled kids in 2016 (or 2017).

I don’t want to minimise Sam’s challenges – loads of things are tough for him, almost nothing comes easily, and much is really unfair. And as a family we sometimes struggle when Sam’s disability makes things more complicated for all of us. But right now, as a seven year old boy, Sam is having a good life most of the time (and really, which child is having a good life all of the time? I mean every kid has to tidy up or eat Brussels sprouts or go home some of the time). He has loads of fun. He laughs most days. He is loved. He is learning. He is thriving.

By way of illustration, between his sixth and seventh birthdays Sam:

  • Had a baby sister: tolerated Stella’s wailing, put up with a third of our attention rather than half, learnt to deal with her grabbing onto his legs and pulling his hair. And then got a new baby cousin, Ralph, who also sometimes likes a bit of a wail.
  • Learnt to cycle his trike on his own: whizzed round in circles, racing Eli and being unbelievably pleased with himself. He is still working on learning how to steer.

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  • Made really noticeable progress with communication: starting to eyepoint using his communication book to tell us things, more reliably telling us yes and no.
  • Made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.
  • Went on holiday to Cornwall and France: first flight for three years, loads of swimming and beach time, hanging out with family and friends, getting tanned (and on one unfortunate occasion burned), getting a new passport.

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  • So many jokes with Eli. So many lovely moments between these two boys.

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  • Started staying at a children’s hospice for the occasional night, didn’t seem to be traumatised.
  • Moved house, again. Visited the building site to review progress and try out his new lift. Before he is eight he should have managed yet another move, his sixth since he was born.

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  • Began to be hoisted (rather than manually lifted) for most transfers between chairs and beds: coped much better with this than his mum.
  • Listened to lots and lots of audiobooks: his bluetooth speaker and ipod have become essentials wherever Sam goes, and there’s therefore been less screen time, developed a love for the books of David Walliams (except the highly emotional ending of Gangsta Granny) and late in the year Harry Potter.
  • Finished his first year at a new school: totally smashed it, participated in a whole school play in his walker, another year of loving learning, fascinated by the Great Fire of London.

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  • Was increasingly contented: Sam has spent the last year less fractious and generally happier. We spend less time flicking though films to find the one he is happy to watch, less energy trying to entertain him in public places so we can finish our lunch. This is probably connected to us having more (paid) help, and Sam getting older and more mature, helped – we think – by his surgery in 2015. As long as we explain what’s what is going on or is about to happen, Sam is noticeably more able to deal with unfamiliar or demanding environments. Long may it continue.

As we celebrate another year of Sam being our son, I am so very proud of this boy (and still so very sad that seven years ago he was still in hospital). He is such a joy to us all, so filled with patience and humour and determination. Happy New Year everyone – let’s all hope we come across more Sams, less pity and more positivity in 2017.

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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)