Sam’s Dad

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If I could undo Sam’s disability I would. I don’t have any time for the idea that it is part of some plan, or that Special People have Special Children, or that this is the way Sam was meant to be. Sam was a healthy, fully able baby in my womb, then his brain was damaged and now he is disabled. When he is older he can tell me what he thinks, but in my view it would be better if he wasn’t disabled. There is almost nothing that has followed from his birth I wouldn’t give back in order for him to be able to walk and talk. Of course this becomes more and more theoretical as he gets older, and we can’t imagine him any other way.

Sam is disabled, and he can’t walk and talk. But Sam is happy and healthy so we must get on with it.

However, one thing that I know now, that perhaps I wouldn’t have known quite so clearly without Sam’s disability, is that I married the right man. I am lucky. For this I am extraordinarily thankful.

Last week marked the anniversary of James and I getting together exactly fifteen years ago, when we were undergraduates spending too much time watching Neighbours and drinking too many pints of cheap lager. In the following ten years we had many adventures and a lot of fun, travelling frequently and building careers.

Then, five years ago, when Sam was born everything changed. I have no doubt that I wouldn’t have made it through the first year of Sam’s life relatively unscathed if I hadn’t had James. We were worried and sad. It seemed hard to have fun. But at least we were doing it together.

There is no equivalent to the shared responsibility of parenting, the person who is as interested as you in some domestic anecdote about something your child has done, who is as pleased as you are with a small development. I have taken on the majority of day-to-day care and co-ordination of Sam’s life, but James is always there listening, commenting and encouraging. James can do everything for Sam that I do and will do it happily, be that getting up almost every night with him for 6 months when I was breastfeeding newborn Eli, or feeding him and giving him cuddles.

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I do not take this for granted. Statistics about relationships of parents of disabled children are chilling: you are more likely to separate if your child is disabled. The combination of demands (physical, financial and psychological) and stress are too much for many couples.

I can’t help think this isn’t helped by many professionals addressing themselves almost exclusively to mothers. We have had numerous experiences in hospitals, clinics or at home where people talk to me and ignore James. They do not ask his opinion, or literally talk to me about Sam with their back to James (for example, about the risks of an impending general anaesthetic).

But it is a fundamental misunderstanding of the dynamic of our family to think James isn’t interested or involved in Sam’s day-to-day life. It is not only insulting to James by minimising his role as Sam’s father, but also puts more pressure on me as the one who should know everything and shoulder most of the responsibility.

It also doesn’t account for my notoriously unreliable memory versus James’s ability for near-perfect recall. Or that James combines all this parenting with a full-time job. Or that, for example, he’s taken a day of leave from that job to be sat on a hospital ward being ignored by a junior doctor.

Sometimes I look at my kids and I almost can’t cope with the amount that I love them. I felt like this about my younger sisters when they were small – I sometimes almost crushed them with cuddles. Like yesterday when I collected Sam from school; I walked in to his classroom and he was so obviously happy to be there, and then saw me and looked like he was the happiest he had ever been.

The only thing better than that feeling of fierce pride and overwhelming love is witnessing it between your husband and your children. He loves them as much as I do, and we are all Team Sam.

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How we learn to talk

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I have just done a two day course on a system that I hope will help Sam communicate with us and everyone else.

Communicating is one of Sam’s biggest challenges. He has a lot to say, but his severe disability hampers all of his efforts to tell us what he thinks or wants: he can’t speak, he can’t point, yet he understands a lot.

He has found highly effective ways to get round this day-to-day. He can smile or frown, laugh, shout or show us his bottom lip (the degree of protrusion of the lip is directly proportional to his sadness, on a spectrum that ends in full-blown sobbing). Whingeing indicates dissatisfaction. Looking expectant means ‘I’m interested’.

Sam has the intellect to express far more sophisticated ideas and desires than this – but he needs the tools. So we are working with Sam’s school and a number of speech and language therapists to maximise his opportunities, using Assistive and Alternative Communication, or AAC, the term used to capture a whole range of communication systems that don’t rely solely on speech.

Everyone involved in this effort comes together at a termly review meeting. Last week that involved eight professionals sitting around a table for several hours discussing progress. The combined level of expertise is immense.

And partly because of all of this input, Sam is doing brilliantly. In last week’s meeting someone pointed out that (PROUD MUM ALERT) Sam’s spelling is on a level with his non-disabled peers, so it’s important to not push him too hard. He already has to work much harder than a typical kid to spell consonant-vowel-consonant words but he’s doing it – on an eye-gaze computer or by looking at magnetic letters with Granny.

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The major new communication concept we are introducing to Sam is a PODD book, developed by an Australian woman called Gayle Porter, a minor celebrity on the aided language scene.

PODD books are full of symbols that you point at to express yourself. The ambition is that Sam will eventually be able to show us which symbols he wants to ‘say’ (video of a child using PODD here).

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The success of using aids like PODD books is totally dependent on the expertise of the people surrounding Sam. The course I was on last week was an attempt to increase my confidence and knowledge.

I came away enthused. This has huge potential for Sam. But at the same time I’m nervous, intimidated even. I took away three main insights from the course that really highlighted how big an endeavour this will be:

1. Do we have the stamina to do this justice?

A typical child hears spoken language for at least 18 months before they start talking (over two years if you’re Sam’s brother Eli). It therefore follows that we should be modelling use (otherwise called ‘receptive input’) of the PODD book to Sam for at least a year before we expect him to be using it with us. If we were really to mimic normal acquisition of speech, James and I would use it to talk to each other in front of Sam.

At the course we were shown totally inspirational videos of young children communicating, in ways that just would not happen if they hadn’t been taught to use PODD. But … in some of the videos, their mothers (and they were almost exclusively mothers) had modelled use of the PODD books with their children for over a year before their children started interacting with the book.

The level of skill of these women is impressively high – they can navigate expertly from page to page and find symbols really quickly. But even more important is their level of determination. They have dedicated years of their lives to teaching their kids to use PODD books, even when the kids weren’t apparently engaging with them. It is hugely inspiring, but also massively daunting. What if we’re not committed enough? What if we get bored and demoralised, and that means we fail Sam?

2. You can’t learn a language if you’re placed on mute

If you think of the PODD book as Sam’s way of talking, then you have to have it available to him all the time. Otherwise you are effectively silencing his voice. It is close to the equivalent of gagging a verbal child to stop them talking.

We are already guilty of doing this: we introduced Yes and No symbols on Sam’s chair so he can look at these to answer questions. A few weeks ago, the No got puked on, the sellotape got wet and the symbol fell off. Despite daily good intentions, I still haven’t got round to sticking it back on. And I haven’t got round to putting the Yes and No symbols on his wheelchair.

I introduced an opportunity for him to tell me things and them I took it away. Shit.

3. This needs to be a whole family enterprise

On the course I also saw videos of young children using PODD books really competently with their disabled siblings. Eli is really trying to work out the rules around him at the moment and where Sam fits into it: for example, ‘big boys’ walk and babies don’t, but Sam is a big boy and doesn’t walk (cue confused/amazed face). We’ve had discussions about whether Sam can hear Eli talking, because normally people talk back when they hear you, but Sam doesn’t talk.

Eli already talks to Sam on his terms – he says ‘night night’ to Sam every night and waits for Sam to look at him because he knows that’s Sam way of saying goodnight back. When Eli asks Sam a question he says, ‘Sam, can I play with your Peppa toy, YES OR NO’!

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Eli could easily pick up the way a communication book works (the photo above shows him at 18 months getting interested in one), but only if he sees us using it. We have to normalise it within our family, even if the wider world insists on only speaking to each other.

I should reiterate that I really am filled with enthusiasm – the PODD system has been thoughtfully developed and children exactly like Sam have learnt to use it proficiently. But, oh my goodness, what a weight of expectation. Remind me of this blog in a year, when my enthusiasm for pointing at symbols might be wavering and I need to remember that we knew we were in it for the long haul.

Music: finding a beautiful voice

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Sam has just started music therapy. After an initial assessment with a charity over two years ago, we finally made it to the top of the waiting list. As the days get longer, we are seeing more and more of Croydon as we make our way to the purpose-built Nordoff Robbins centre. for weekly music sessions

We were a bit nervous. We know Sam likes music – one of the comments from his school report last year was that he loved choir, something we were really pleased about, not least because by definition choirs involve a lot of noise. Sam still has a reflex that causes him to physically startle at loud noises. He has found this upsetting in the past but is learning to manage the shock.

And we watch him enjoying music at home – one of the most reliable ways to make him laugh is for his uncle to play the piano while telling jokes, in the style of Flanders and Swann.

But all of that didn’t necessarily mean music therapy would go well, especially after a full day at school and then an hour in the car.

At our first session we were met by our friendly music therapist, who I will call C. She suggested that she take Sam off into the music room while I wait in the entrance room. What?! Let Sam be taken off into another room without me? With someone he (and I) has only just met? Are you nuts?! That has literally never happened before.

But of course I was too embarrassed to say all that – no-one wants to be a mollycoddling, helicopter parent unless absolutely necessary. Sam was totally relaxed. C seemed confident. So I said meekly, ‘Great, yes, I’ll just be here’, trying to portray a sense of calm and normality.

Then I sat in the waiting room, sending my husband texts saying things like ‘Sam’s in music therapy on his own! Nervous!’, praying that Sam didn’t puke on C. I was straining to hear what I could from the music room but I couldn’t hear any complaining, just a bit of distant guitar, then a drum, then some singing.

After half an hour he reappeared looking pleased with himself and C said it had gone really well. I was even more chuffed than Sam.

Our second visit followed the same pattern, only this time at the end of the session I heard Sam crying from the other room and when he came through the door he was crying sad, hot tears. C said he had got upset when she sang a goodbye song. As we chatted he calmed down a bit, but each time we talked about leaving or saying goodbye the tears started again. And on the way home he sobbed on and off for twenty minutes, which is really unusual for him. He gets upset and he cries sometimes, but almost never for that long.

This week we went for our third session and the same thing happened at the end, but with less dramatic sobs and a quicker recovery. C is taking it all in her stride, but I started to worry that Sam just doesn’t like music. It seems unlikely since he’s happy when we arrive and enjoys music at school, but maybe…

I was talking to another music therapist while waiting at the centre, and he said it was lovely that C and Sam were getting on so well. We had a conversation about how much Sam ‘talks’ i.e. not at all, but he makes all sorts of noises that we can interpret as happy, sad, annoyed or bored. He said it was lovely to hear Sam singing with C, and that Sam has a ‘beautiful melodic voice’, which struck me as an incredibly accurate and particularly lovely thing to say about a child who can’t use his voice easily.

I’m hoping Sam’s approach to music might be like his acclimatisation to the school bus; he started cheerful, then found it all too much, then settled into happy contentment.

I’m pretty sure he really likes C and her music, and is just really upset that every week it finishes after only half an hour. In the absence of Sam being able to tell me, I’m keeping my fingers crossed. Maybe he is finding his voice.