Sam is 9!

Sam is now 9! I just reread my last proper blog about Sam’s birthday, when he turned 7, and much of it I would like to repeat: I can’t believe he’s 9! He’s so tall! Well done us for 9 years of parenting!

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A lot has happened in the last two years, though in many ways things for Sam and us can seem similar – the appointments, the physio, the school, his interests. When you are there every day you don’t notice your kids growing up, until you catch sight of them across a playground and cannot believe that massive child once lived in your (my) womb.

Two years ago I said Sam had:

“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.”

That was true then. It is also true now: what I want to tell you on Sam’s 9th birthday is that he’s got so much better at using his eyegaze computer (and lowtech communication book). That he often knows exactly what he wants to do, will choose the story he wants and navigate through it, that he goes into and then exit activities when he wants. That he uses his communication software to say things that are entirely appropriate.

Some of what I want to say sounds so similar to 2016 that it begs the question of what  what exactly has changed since he was 7. The complexity of the way Sam learns and communicates means progress, or development, is hard won. It can be inconsistent and hard to capture precisely. I look back on Sam two years ago and I know that he wasn’t as good at navigating around his communication device as he is now. That isn’t to say he wasn’t doing those things before, but perhaps I did see small improvements and leapt on them. I know more now, I expect more of him now. In some ways Sam is doing much the same stuff he was doing two years ago, and in other ways he’s made wonderful progress.

The timescale of helping Sam learn new skills is difficult – it can take a long time. It can be hard to know whether he is improving or learning, and therefore whether you are doing the right thing. It can feel pointless to continue working on something that appears to be having little impact. We knew that communication was a long term project, probably lifelong, but you still can’t help hoping that there will be some kind of miraculous progress at some point.

Which of course there isn’t. But there is slow incremental improvement, a bit more nuance, a little more unprompted communication. It is all subtle and understated. We are talking about complex skills, involving deft eye control, motor planning, memory and language knowledge. It’s difficult to articulate, but I’ll do my best.

Two years ago Sam was using a high-tech eyegaze device that we had bought ourselves – it was a laptop with an eye tracker connected via USB. He could only use it when sat at a table. For the last 18 months he has had an NHS-funded eyegaze device which mounts to his wheel-, school- and home-chairs. He is still quite light, so his weight isn’t sufficient counterweight when the device attached which means it can’t be mounted all the time (e.g. on uneven ground), but he has it mounted on his chair at home and school for some portion of every day. For the last year he has also had additional educational funding so he has two hours of 1:1 time each day when an adult supports his communication specifically – modelling how to say something on his device, helping him find specific vocabulary, helping him use his device to do school work.

These developments have given him more time to practise and more opportunities to find pathways within his communication software. Sometimes progress doesn’t look how you imagined: over the summer he used all of this input to navigate out of his communication software every time I tried to talk to him using it. Every single time. This was disheartening – isn’t supporting his communication meant to mean he communicates with us more?

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To do this he was adeptly selecting three different cells in different positions on three different pages in order to exit his PODD communication software and then go to one of the stories on his device – clearly communicating that he didn’t want to talk to me, he wanted to read (and be read) a book. So I had to admire his determination and skill, and respect his wishes – to force him to talk would be as inappropriate as trying to make a verbal child speak to you.

Since the summer he has chilled out in this particular regard, and will now talk with his device. It is mostly in the context of a specific conversation rather than unprompted speech. It’s getting increasingly relevant and timely, with some ‘scaffolding’ provided by  his communication partner.

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For his birthday Sam’s aunt Rosie sent him some incredible shoes with lights in the soles. Once we’d opened the package and put them on, we talked about them with his device. I went to the homepage of his communication software, where there are various categories of words, and went to Special Events. He then chose ‘happy’ and ‘birthday’, and then I selected ‘present’. I said ‘this present was from…’, and I went back to the home page and into the People folder, where Sam selected ‘Rosie.

I said, ‘yes, from Rosie. And look what she’s bought you!’. I couldn’t remember where exactly to find the word but went into the ‘Clothes’ page. I then got distracted by trying to stop Stella inspecting Sam’s shoes so closely that she risked being kicked in the face. Then I heard Sam, via his device, say ‘shoes’.

He had gone to the folder called ‘shoes’ and then had ignored the cells called boots, thongs (it’s Australian software), AFOs, sandals and trainers to select the one that said ‘shoe’.

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Sam knew what I was talking about, he knew exactly which words we needed, and he found them with his eyes by navigating between pages, selecting the correct one of 18 cells on the screen, repeatedly. It’s functional, practical, appropriate communication. It’s everyday speech, only it has taken years of practice and support for this to become close to our everyday.

It’s one step further forward for a boy who has spent nine years working so hard to make himself understood. He’s 9! I’m so proud!

 

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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.

The temptation to interrupt

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If you have a child who doesn’t follow the typical path it’s difficult to have a sense of where they will end up. I don’t mind this too much; I don’t find it that useful to have conversations about what Sam may, or may not, be doing in ten years time.

But everyone looks for role models for themselves or their kids, and some sense of where the path might be going. Disabled adults are rarely found in mainstream media, so I was lucky recently to be at a study day where a panel of five Alternative and Augmentative Communication (AAC) users answered questions from the audience using high tech devices. Three of the five used eyegaze, exactly like Sam is learning to. There is a video here.

It is important, and inspiring (not in an inspiration-porn kind of way) to see people using AAC to talk so eloquently. THAT is where we want to aim for.

But I was really struck by something that one of the panellists – Kate Caryer – said at the event: she pointed out that people sometimes think of a communication aid as a gift or a toy, that users should feel grateful their local authorities have provided. Whereas it is in fact a human right.

Respecting Sam’s right to communicate means his device needs to be there, in front of him, as much as possible, not just when we decide we can fit it into his daily life. We need to make sure the batteries are charged, and the mounting arm is ready when it is needed. We need to force ourselves to fit it even when it feels like a bit too much effort on a busy day.

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But more profoundly, we have to be ready to hear what is being communicated. We have to alter our own culturally-constructed notion of how conversations work.

I find it uncomfortable to leave gaps in conversation – I feel I have to fill them. I first realised this when we lived in the Middle East and would spend time with Syrian friends who were happy to sit companionably with long pauses in conversation. I had to teach myself to enjoy this time and not fill the gaps with mindless waffle. This was made easier by my rudimentary Arabic.

Someone using a communication aid to talk is probably going to take longer, more time than a typical talking person. At the study day, it took time for the five individuals there to answer questions from the audience: they need to hear the question, navigate (with eyes or fingers) around their communication device to find the vocabulary for what they want to say, and then speak it.

This often makes conversation with an AAC user slower than we are used to, and I for one need to force myself to accept that rhythm of speech. This means waiting the extra 30 seconds to see what your conversational partner wants to say, and not interrupting. Sam isn’t able to shout immediately, in the way that Eli does frequently, ‘Mummy, I was actually in the middle of talking when you interrupted me!’

I frequently screw up even when I am trying my best. I realised recently that after a conversation with a woman who uses a communication aid, I had said goodbye and walked away. I hadn’t waited to see if she wanted to say goodbye, or even if she had anything else to say. I felt a little sting of shame when I later realised. We can all have good intentions, but we don’t always behave as well as we’d like.

If you manage to fully embrace the alternative pace, there are rich rewards. A few years ago when Sam was just learning to look at Yes and No symbols on the armrests of his wheelchair to answer questions, we went to a local park and met some friends. One of them, who happens to be a nurse, crouched down in front of Sam so she was at his level, asked Sam if he was enjoying his new school, and then waited.

Sam slowly and deliberately looked down at the Yes symbol. It was the first time he had totally independently answered a question from a stranger, and it happened because she asked the question in the right way for him.

If we accept that people with communication difficulties have a right to talk – and therefore to be given the support, equipment and training they need – then they also have the right to be heard. And we, the people taking our communication skills for granted, have to learn how to listen. Not make assumptions about what is being said, or interrup, or fill the gaps in conversation with inconsequential waffle, but actually listen.

I mean it’s a good tip for life generally – many marriages could benefit from partners actually listening to what each other are saying. But rather than forcing the AAC user to navigate their way through their devices to say ‘Stop interrupting me’, maybe we should just take it upon ourselves to get our own houses in order.

 

A New Standing Frame

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Sam needs a new standing frame. He stands most days – he is unable to stand on his own so the standing frame provides enough support to keep him upright.

On a busy day Sam can spend up to 10 hours a day in his wheelchair. He ‘tolerates’ sitting in a chair really well, He’s happy being able to see around him and his chairs are comfortable and supportive enough for him to be content to spend hours in them, but it’s a long time for his body to be in one position and over a lifetime sitting this much can lead to all sorts of problems.

There are lots of advantages to standing. Human bodies are designed to be upright and although Sam spends about 12 hours a night lying flat, it’s not the same stretch as standing straight. Bodies should ideally experience a variety of positions, and the digestive system benefits from him being upright. Also kids like Sam are at huge risk of their hips migrating out of their sockets and in the absence of daily walking, standing is a good way to bear weight on bones and joints.

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Sam first had a standing frame when he was almost one year old. At that stage he often hated it, and it felt more like a torture instrument than a helpful aid. These days Sam will happily spend an hour standing as long as he has good enough entertainment. The standing frame isn’t particularly elegant, and takes up a lot of room, but the benefits to Sam are worth having it available to him.

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A rep visited recently with a new kind of standing frame for Sam to try. There was normal amount of fiddling and adjusting, but once Sam was in the new standing frame he was happy and his physio was able to see that it worked.

At the end of the session we were asked what colour we wanted the new standing frame to be. Bear in mind that this is a standing frame that lives in Sam’s room, the room that was finished and decorated earlier this year. The room that I am desperately trying to keep as a boys bedroom rather than an equipment storage room.

Sam’s physio said we could have it in black, pink, orange or blue. Blue, I said. That will be best.

Then James said, ‘Um, shouldn’t Sam choose what colour he wants his standing frame to be?’.

Of course he bloody should! What was I thinking? I spend a reasonable amount of my time glowering at people who don’t talk to Sam directly, reminding everyone that just because he can’t talk doesn’t mean he doesn’t understand what people are saying. I tell people that he is a boy with views and preferences. What kind of ally am I?

Except… I have a history of manipulating my children’s choices. When Eli is choosing between two tshirts and one is really ugly, I will unashamedly steer him towards the one that I don’t dislike. I haven’t allowed some things in Eli and Stella’s bedroom because I don’t like them (e.g. massive garish posters).

I had a strong suspicion that given the choice Sam would choose to have an orange standing frame. Orange is his favourite colour. Let me explain that I have a mixed relationship with orange. It’s a hard colour to get right in my view. And the orange of this standing frame was more sickly, pasty colouring paper than cool, vibrant citrus fruit.

Fortunately for Sam he has hugely improved his ability to clearly communicate Yes and No over the last year. Last year it was often difficult to tell whether Sam was answering a question and we estimated that we clearly understood his yes and no maybe fifty percent of the time which is a bit tricky with a binary outcome. Now we would say that we get a clear yes/no about eighty percent of the time.

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So using his latest communication book I talked Sam through the options and asked him what colour he would like his standing frame to be:

Would you like a new blue standing frame, Sam?

No.

Would you like a black standing frame?

No.

Would you like a pink standing frame?

No.

Would you like your new standing frame to be orange?

Yes.

Obviously.

Totally cocking up my interior design aspirations.

Thanks Sam.

The privilege of touch

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One of the main things about having kids is how much they touch you – from months of carrying around a baby, possibly breastfeeding them, to years of having a child on your lap and a snotty nose wiped on your arm. It can feel like near constant touching. Of smooth baby skin smelling of milk, of small fingers squeezing you, of hands whacking you in the face.

The physical relationship between a parent and a kid is so unselfconscious and incredibly lovely. Stella is just learning how to kiss and when she hasn’t seen me for a while she will come to give me a cuddle and then repeatedly touch her cheek and mouth to my lips. It is delightful. As Eli has got older there are less frequent but more prized requests for a cuddle, and I will never say no.

When you raise a small child, you get to know their body so well that not only do you know what it feels like, but you also know how it moves. If I see Eli walking down the road, I know if he is happy or sad. If James sends me a photo of one of the kids where you can’t see their face clearly, I’ll probably be able to tell what kind of mood they were in.

In some ways I know Sam’s body better than my other kids. Eli and Stella can choose to walk away from me, or to move their body in almost any way they like. If Sam is sitting on my lap, he will be there for as long as I choose (though of course he can make clear whether he is enjoying it or not). While he is sitting on me, I will be supporting him. Both James and I have been doing this for so long we couldn’t now describe what we are doing, but we use our arms, legs, torso and head to mimic a seat, to find a comfortable way for us both to be within the whirl of Sam’s ever moving body. Sometimes it’s not easy, but in this we join a long list of parents prioritising providing comfort to their child over backache.

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When Sam was little, we would spend hours holding him and rocking him in a figure-of-eight pattern, to ease the pain of reflux or to calm him sufficiently for him to sleep. These days he’s way too big for that and he spends more time sitting in a specialist chair, with us nearby. It is a less intimate physical connection but still one within which I know his body. The nature of Sam’s disability means he moves a lot, and has limited volitional control over the movements, but within the apparent flurry of limbs there is meaning.

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Sam’s often communicates his emotions by making noises – there are different kinds of sounds for happy, sad, interested, annoyed. But even without the noises, just from the way he is moving his body I could tell you whether he’s in pain or just bored. I could tell you whether Sam’s excited or frustrated. Not always, but often.

Sometimes Sam’s body needs to be moved in ways that it does not do easily. I know how to play his limbs, how to bend his knee and turn his foot in just the right way to get his shoe on properly without hurting his toes. I know what kinds of movement he likes, and what he will find irritating (and therefore which TV programme will distract him, if it needs to be done).

His is a body that can frustrate him and be difficult for others to manage. His is a body about which there are meetings held and training delivered to consider ‘health and safety’. But this body of his, which some people may see as inferior or less desirable, is actually something of real value. In the absence of being able to talk, his body can tell the story. In the same way that I can sometimes tell from the particular sound of his cough whether he needs to see a GP, I will be able to tell a therapist whether he is in pain or not from the particular way he moves his pelvis.

I treasure this knowledge I have. That even when my relationship with him, with all my kids as they grow up, is becoming less physical in the every day, that I still know these bodies. They are not mine – I am just nurturing them until they can look after themselves. But as the days of holding newborns recede, there is no absence of the raw physicality of touch, and the accumulated knowledge of knowing how these bodies work. It is an absolute privilege.

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Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Stella has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

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It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Stella love-in.

I started to feel a bit uncomfortable about it. How does Sam feel about Stella learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Stella does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Stella’s walking. Acting as if it was no big deal. Then Eli asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Sam’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Eli and Stella will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Sam can’t walk along walls like Eli can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Eli’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Sam won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Sam Likes. Each child is on their own track and we should only compare them against their progress on that track.

 

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Sam what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Stella – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

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He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

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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Let him shout (at Trump or anyone else)

In the dim and not-so-distant past when it seemed impossible Obama would be replaced by a misogynist as the President of the USA, I watched a video of someone protesting at a Trump rally. The internet was full of footage of protestors at Trump rallies, and inevitably Trump insulting the protestors, but this was different. Different because the protestor was a 12 year old boy, who has cerebral palsy, who uses a wheelchair, who talks using a communication device.

JJ Holmes lives in America and had been following election coverage by using his iPad to search for Trump events, typing the words in using his nose. He knew Trump had mocked disabled people and eventually convinced his mum to take him to a Trump rally so he could protest against him. She warned him it might get ugly but he wanted to go anyway.

He pre-programmed phrases into his computer before they went, so that at the rally he could shout slogans like ‘Trump mocks the disabled’ and ‘Dump Trump’. He could play the messages through his communication device by pressing a button with his leg (there’s a brilliant video of him using the button here. As it wasn’t that loud, his mother and sister chanted along so he couldn’t be drowned out too easily.

After a bit the supporters surrounding them turned rowdy. Trump heckled JJ from the stage and told security to ‘Get them out’, and they were jostled out amidst JJ’s wheelchair being shoved and some pretty horrible things being said to all three of them.

So…

I mean obviously there’s much to be depressed about in this little anecdote, and that’s before we even knew Trump would become President.

But out of the murk I find inspiration: a 12 year old disabled boy convinced his mother to take him to a political rally to protest Trump’s attitude toward disabled people! He programmed chants in to his communication device!

I can’t tell you how proud I would be to have raised a son who was so politically aware and knew the power of protest. A boy who knew he was disabled and knew that was okay. Who knew that Donald J Trump (as JJ refers to him) was wrong to belittle disabled people. Who was brave enough to go to an adult event and make himself heard. Who was willing to be heckled and shoved to make his point.

I would be so proud of my son for learning to communicate with his nose and his leg, and having the patience and determination to make himself heard.

I am filled with admiration for a mother who took her 12 year old seriously, and facilitated his protest even though she knew it could get ugly. Who told journalists, ‘He’s not some puppet I wheeled in there. This was him – this was all him.’ I would be proud to be such a staunch ally. To treat communicating through a device as equal to talking (or shouting). And to have raised a daughter who wants to protest too.

I’m proud of a world where disabled people are helped by technology and supported to communicate when they can’t speak.

What the whole story relies on is JJ’s ability to shout (even if his device’s voice output isn’t quite loud enough to be heard above enthusiastic Trump supporters).

Sam has been using his eye-gaze computer for some time now and is beginning to create messages or questions within his communication software, or he uses the computer to read himself stories. We try to give him as much autonomy over the computer as possible (whilst hovering around, interfering, facilitating and modelling) so he can choose what he wants to do. When he chooses to use it for communication, we take the messages he says seriously.

By ‘says’ I mean that as he selects words within the communication software, they go in to a window at the top of the screen. When Sam goes to the ‘speak’ cell the computer says all the words out loud. When he is reading himself a story he selects the ‘speak’ cell and a paragraph of, for example, Mr Stink by David Walliams, will be read aloud by the computer.

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But the loudest volume of Sam’s computer isn’t that loud. He can hear it as he is quite close, but you can’t really hear it if you are across the room, and you definitely can’t hear it if Eli or Stella are squawking. So Sam’s speech and language therapist recently gave us a speaker to sit on top of the laptop, the volume of which can be controlled within the communication software. It can be turned up really loud, because if you are going to give an AAC user the opportunity to communicate as a neurotypical child would, you need to give them the ability to SHOUT if they want to. Or whisper. Or somewhere inbetween. Sam should be able to compete in volume with his siblings even if it’s not something I particularly relish the thought of.

In the same way that I ask Eli many, many times a day to please not shout, Sam should be able to be loud and annoying. There is a temptation to think of children like Sam as ‘good’ because they are relatively quiet and controllable, but part of being a child (any child) is being disruptive and protesting and Sam should have as many opportunities to do that as he has to be compliant. If we get to the point of Sam purposefully turning up the volume of his computer and shouting at us all, and me having to tell him to turn it down, that will be a good problem to have.

Meanwhile, JJ’s recovery from the Trump rally ordeal was helped by him meeting Obama the following day who was every bit as friendly as you would expect, crouching to his level, listening to JJ’s messages and shaking his hand.

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(Holmes family photo taken from Washington Post website)

According to a Clinton official, when he was told he was about to meet Obama,  ‘JJ jumps out of his seat and erupts into cheer . . . his smile almost bursting out of his face. His body overcome by light, when just the day before it almost succumbed to hate.’

Let’s keep heading toward the light, people. Let’s confront bullies and prejudice. Let’s give all our kids the ability to communicate, to shout and to protest. Let’s take them seriously and hope that one day we might meet Obama.

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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.

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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.