Festival spirit

Yesterday, I took the two little ones to a festival – Daytripper – on my own. It’s not the sort of thing I would normally do. I’m not great at mixing with people I don’t know, or don’t know well. It’s in a crowd that I feel loneliest and most conspicuous. And with an energetic toddler and Benjamin, with his tube and his bile-bag and his suction pump I was sure going to be conspicuous. And without my chatty biggest girl and my husband I was sure going to be lonely.

Ric and Jackie were away camping (with his best mate and her best mate and our car and a bottle of whisky), and this festival only comes around once a year, and it is only two minutes from our house. So my options were to sit around the house listening to it from outside, or go and join in the fun: try not to worry about the routine of medications and feeds and physio and do something ‘normal’ families do.

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The children were both totally up for it

Maybe I’m over-egging it a bit: it wasn’t exactly Glastonbury – it wasn’t even an overnight thing. It was a few bands I have to admit I hadn’t heard of, in a small park with only one entrance for Caitlin to escape out of. The sun was even shining and the loos were cleanish (even if I couldn’t get the buggy through the door). And, as I said, it was literally two minutes’ walk from our house.

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Mummy, why is the sky that funny blue colour?

I did find it a bit difficult to mix at first – but mostly because I had to keep breaking off from conversations to chase Caitlin, or to move Benjamin into or out of the sun as I fretted whether he was getting too hot or too cold. But Caitlin made friends with a little boy through the medium of bubbles, so I braved the bar for another sort of bubbles…

…and as the sun went down and the pyrotechnics (really!) came on, we all drew closer to the stage and I found myself drawn into a friendly crowd of local mums, dads and neighbours. The music was great, the pizza was yummy (if a little grass-covered after Caitlin had finished with it), Benjamin enjoyed the lights and the music, and Caitlin stayed within sight most of the time, primarily because she didn’t want to move too far from the donut stall. We stayed out almost to the end – well past the children’s bedtime if not mine – and listened to the last couple of songs on the way home. I even managed to get both children to sleep after all that excitement – in time to reward myself with a shower and another (small) glass of wine.

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Grass-cuttings with your pizza, anyone?

So were we conspicuous? Well, maybe – but certainly no more so than the 87-year-old who was dancing with anyone and everyone and enjoying every minute of it. Yes, it was tricky managing tube-feeds and nappies without getting everything contaminated with crazy-string, but no-one else seemed to bat an eyelid. Yes, a little girl came up and asked questions about Benjy (much to her mum’s consternation) but not in a fearful or critical kind of a way, just out of innocent interest. Yes, Caitlin did repeatedly make off someone else’s football but, well, I just pretended she wasn’t anything to do with me!

And was I lonely? Well, of course it felt strange being there without my husband to hold, and without my biggest girl to indulge (we brought an Elsa balloon home for her) but really I was reminded how warm and welcoming this small town can be, if I only stop looking for problems and let it.

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Feeling the love

At the same time as I was dancing the afternoon away with my children, another SWAN family elsewhere in the country were visiting their music-loving little boy’s grave, leaving sunflowers in memory of his bright spirit, which passed just over a year ago. I honestly cannot imagine what that must feel like. To visit your own child’s grave. However hard it is – however hard – to care for Benjamin, to get out and about with Benjamin, to fight for what he needs and to do things that ‘normal’ families take for granted; it cannot ever be as hard as that.

So however conspicuous, lonely, difficult and downright different our life is, we need to make sure we keep on living every minute of it to the full. I will dance until I’m 87 if I can keep my loved ones dancing with me. I certainly intend to be dancing at Daytripper 2018.

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Therapy for two

To be honest, I’m terrible at making time to do therapy with Benjamin. A quick stretch while I’m changing his nappy. A couple of rolls when we’re getting dressed in the morning. Plonk him in his chair facing in a slightly different direction each day, give him some toys to look at and that’s about it.

To be honest, by the time I’ve done all the treatments that keep him alive – the inhalers and the nebulisers and the chest physio and n-p suctioning; by the time I’ve given him his medication six times a day and made up his feeds and checked his stoma and washed and dried all the syringes; by the time I’ve done the day-to-day essentials – washed him and dressed him, brushed his hair, changed his nappies, set up his sleep system, carried him from room to room, there doesn’t seem to be much time left for ‘therapies:’ the things that won’t keep him alive but will help him develop. The things that will stretch him, mentally and physically. They drop to the bottom of the list, somewhere between making sure everyone gets fed and catching up on the endless piles of paperwork that come with having a child with complex needs.

To be honest, putting him into shoes or splints or getting him onto a gym ball is quite hard work – he’s not getting any lighter or any more flexible. Getting him into his standing frame is really hard work. Sometimes even keeping him awake or finding a toy that grabs his attention is really, really hard. I’m scared of hurting his stoma, fearful of pulling out his feeding tube. I’m worried I might drop him!

And I don’t want to push him – we’ve spent too much time in and out of hospital to want to push him. Too much time wondering if his seizures could be caused by overstimulation. Too much time fearing that rolling around on the floor during physio would make his reflux worse and therefore make his chest worse. Two days a week he goes to nursery, which is brilliant but exhausting for him: there’s no way he’d manage any exercises on top of that. There’s usually at least one other day in the week he’ll have some kind of therapy anyway – a physio visit, or a session with the visiting teacher, and after 45 minutes’ intense interaction with them he’s shattered. Maybe he’ll be a bit off colour one day; another day he’ll have had a bad night and just need to sleep. And then it’s the weekend – surely he deserves a break on the weekend? Or is that just me?

Because Benjamin is classed as ‘life-limited,’ I justify it by the reasoning Saira Shah, author of the Mouseproof Kitchen, calls upon when speaking about her daughter, Ailsa, before she passed away at the age of eight. “What’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked, being dangled upside down. I don’t see why she can’t have a life where she is just cuddled.” But for us this has degenerated into a life where he just sits and watches me work.

Our physiotherapist is wonderfully understanding. ‘Don’t see it as a therapy programme,’ she says, ‘you have enough on your plate. Just do it when you’re sitting with him anyway.’ But when am I ever ‘just sitting’ with him? When do I ever sit, alone or with my children? When do I stop rushing around and connect with any of them?

And then, then there are the girls. They are both part of the problem and part of the solution. It is so hard to find time to focus upon Benjamin, who just sits there passively, dozing, when there are two caterwauling bundles of energy, one stout and curly, one lithe and blonde, pulling you in opposite directions with opposite vociferous demands.

But, no thanks to my lax approach (and partly thanks to our sessions at the Bobath Centre), he’s getting good. He really is. He can look to both sides now – and hold it. He can sit straight and tall with only a minimum of support at his lower back. He can bring his head up with you from lying. He can hold his head up when you lean him sideways. I hadn’t really noticed until I was watching his physiotherapist working with him one day. It’s much easier to see when you’re watching from a distance. And suddenly I thought, hang on, I want some of that.

It was like a switch flipped in my head. Doing Benjy’s therapy isn’t a chore, to be got through as quickly as possible, to be ticked off the list. Benjy’s therapy isn’t in conflict with enjoying him – it’s time to enjoy him, to let him show me what he can do. It’s precious time to spend with him, revelling in his achievements, building a better connection. Just as I spend time with Jackie reading stories before bed, or building Lego. Just as I spend time breastfeeding Caitlin and pushing her on the swings.

I guess I’m starting to appreciate this a bit more now he’s getting older and I’m not necessarily with him 24/7. With his carers, nursery, respite, and time at Rachel House (not to mention time in hospital), we’re slowly dividing his care up between more and more people, which means less and less Benjy-time for me. I need to start claiming some of that time back in ways we will both enjoy and benefit from.

And could it even help me to slow down a bit? Instead of rushing around the house could taking half an hour to ‘just sit’ with Benjy also be a half hour for me to breathe, relax and regroup?

And could it actually be of benefit to his sisters too? Instead of leaving them in front of some uncensored crap on YouTubeCbeebies could we at least and watch Cbeebies together, in the same room, and talk about what we’re watching, while Benjy’s practising his moves? I could learn a lot from Benjy’s little sister, bouncing up and down on her tiptoes in front of his chair going ‘Jenjy – uh – uh – uh – Jenjy’ and demanding to have him lowered down to her height to play. Because that’s all his therapy is, really, play. It’s not arduous, it’s not unpleasant. It’s a bit of stretching out, a bit of rolling on a gym ball, a bit of singing nursery rhymes and doing the actions, a bit of looking at things he likes to look at. What am I making such a meal about? Why am I putting it off? Therapy isn’t in conflict with the cuddles, it’s a way to cuddle him more. We could all do with a few more cuddles in our lives – and Benjy-cuddles are the very best.

Playtime

As my friends on Facebook will know, we reached a major milestone this week. And as other special needs parents will appreciate, what is a milestone for us is something that many neurotypical children do so automatically that it’s barely worth noticing. He started playing. At least, that’s what I’m going to call it. He made repeated (if small, slow) movements with his hands to (successfully!) move an item (one of those silver space blankets) in a way that interested him. Now that’s progress!

And progress not just for him but for all of us. It’s not easy to play with someone who doesn’t respond, who isn’t able to tell you what he likes and what he doesn’t, what he wants to rattle and what he wants to look at. It’s so easy to get disheartened, to plonk him in a corner with something shiny, not thinking he’ll even look at it let alone engage with it, and carry on with making the dinner. So I’m really hoping we’ve hit a kind of positive feedback loop here: I give him a toy, he plays with it, I play with him more. Result! We’re a long way from a game of chess but, at our own pace, we’re getting there.

Communication

Even with my first child I was never one of those mothers who could tell instantly what the baby wanted from the sound of her cry. I would have to run through the whole checklist every time: Hungry? Dirty? Cold? Hot? Tired? Uncomfortable? Sick? Bored? Overstimulated? (Fortunately she was nearly always hungry or we would never have got anywhere).

With him, it’s simple. There is only one cry, only when he’s hungry: a heartbreaking, desolate “mbwah” that cuts right through you, while his tiny face crumples like it is the end of the world. And he doesn’t cry very much – far from it. Nothing compared to the hours endured by colicky babies (and their parents). Sometimes we get an hour or so of screaming when he’s hungry but also so tense he can’t latch on … needless to say he usually takes in so much air that once he does manage to feed he immediately brings the entire breast-full back up again. Cue another midnight laundry session!

So when the paediatrician asked, at our multidisciplinary review, “How does he communicate his needs to you?” we were at a loss. “Er… communicate?” It wasn’t a term we’d really associated with him. Those rare, beautiful smiles seem more a response than a desire to tell us he’s happy. He doesn’t ask to be picked up or played with. We change his nappy by the clock, or when we can smell it. When his muscle tone is high we cuddle him or rub his feet, which seems somehow to relax him. If he clamps his mouth shut when being fed, we stop. If I’m honest, the communication between us is perhaps something like that you would have with a pet cat. Not even a dog.

I think the best, maybe the most human, form of communication is to laugh together. At a special needs group I met a little girl who reminded me of him in one characteristic feature – the shape and size of her head. She’s four-going-on-five, tiny, shy, big eyes behind thick glasses, a mop of brown curls. She doesn’t walk; doesn’t talk: much like the future we’ve had predicted, at least as far as anyone can predict. But she laughs. On this day her dad was swinging her, almost flinging her fragile frame around – like dads the world over do – and she was grinning, giggling, chortling, guffawing, with pleasure and love.

We’re nowhere near that yet – he doesn’t tolerate sudden movements, for a start. But I do like to imagine he’s becoming gradually more alert: fixing on faces, following sounds and movements with his head, looking out for familiar toys even though he can’t yet reach out for them. One day we will play together and one day he too, will laugh.

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