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.

Being Benjamin’s mum

I don’t know why I still subscribe to them. Those weekly emails from the parenting websites listing the milestones my children ‘should’ be reaching at three weeks, three months, three years. It’s weaning time! … How to get your toddler to sleep … Starting school … and, this week, 50 reasons why it’s fun to be a [mainstream] parent.

I know they mean well. If you’re struggling with sleepless nights or a tantruming toddler it’s good to be reminded of the positives, right? But what if none of those things that make mainstream parenting fun apply? What if ‘discovering how lovely the dawn chorus can be’ just doesn’t cut it? What if you’re never going to hear him ‘say I love you Mummy’? Is parenting a SEND child no fun?

Yes, it can be exhausting, challenging, nervewracking, heartbreaking. But I firmly believe that deeper troughs make for higher peaks. SEND parents not only learn to celebrate the tiniest inchstones for all they are worth, but to see the funny side of things that frankly aren’t funny at all! I’m sure these will be different for every SEND family but, on Benjamin’s third birthday, I’ve put together my own list of reasons it’s fun, wonderful and inspiring to be his mum.

  1. He gives the best smiles
  2. He gives the best hugs
  3. Running my fingers through his curls
  4. Looking into his big brown eyes
  5. Tickling the baby-soft soles of his feet
  6. Savouring the simple things with him – the light coming in the window, leaves against a blue sky
  7. Seeing the love his siblings have for him – and how he reciprocates it
  8. Seeing how gentle, loving and patient his Daddy is with him
  9. Seeing his heart rate go on up the sats monitor when he hears Mummy or Daddy’s voice
  10. His smile when you give him a taste of ice cream
  11. His look of disgust when you give him pureed chicken!
  12. Learning a whole new set of skills (nursing, negotiating, engineering, accounting, …). If only I could put them on my CV…
  13. The sense of satisfaction when you hoover a big plug of phlegm out of his throat
  14. The way he looks around in delight when you put his glasses on
  15. How cute he looks in his glasses
  16. An excuse to hang a disco ball in your lounge and have fairy lights up all year
  17. An excuse to play with bubbles every day
  18. Getting to watch Waybuloo on repeat
  19. Shopping – who knew how many gorgeous bibs and onesies there are out there nowadays?
  20. Choosing cute teeny tiny glasses
  21. Choosing snuggly jumpers and snugglier socks
  22. Rediscovering the joy of Christmas – baubles and fairy lights really are all you need
  23. Seeing how he relaxes in the bath
  24. The sense of satisfaction when you manage to capture that smile on camera
  25. Learning his unique language
  26. Seeing him turn his head to look at me when I speak
  27. Seeing him smile when I walk into a room
  28. The special kisses that he saves just for mummy
  29. The special nappies that he saves just for Daddy!
  30. Morning snuggles with five in the bed (we really need a bigger bed)
  31. That feeling that you could watch him sleep forever
  32. Making amazing new friends with amazing wee heroes for children
  33. Meeting a community of other SWAN parents who just get it
  34. Everybody in the town wanting to stop and hear how he is
  35. People passing in the street saying ‘You’ve got your hands full!’ and thinking ‘Yeah, and I wouldn’t have it any other way.’

All this in just three years; I can’t wait to see what you bring us in the future. Happy Birthday my gorgeous boy, I am truly grateful to be your mum.

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Dreams

You know that wonderful feeling you get watching a sleeping child? That sense of peace, and of promise. That perfect little nose. Those long dark lashes and wayward curly hair. That soft, soft cheek under your lips as you kiss him ever-so-gently. The little sucking motions he makes as he dreams. You wonder what he’s dreaming about.

And then you realise that you, too, are dreaming. Dreaming that when he wakes up, he will be the normal little boy that he looks like at this moment. That he will catch your eye, roll over, hold his arms out for a cuddle. That he will slide out of bed and toddle down the hallway. That he will smear his breakfast all over the kitchen. That he will protest, loudly, about getting washed and dressed. That he will charge into nursery to greet his friends at full pelt without a backward glance. That he will call you “Mummy.”

**

If I had my time again, I might study psychology. It fascinates me, as one of our last frontiers of discovery. We can extrapolate what happened at the farthest reaches of the universe, a billion light years ago, but we cannot tell what is going on in someone else’s brain. Two people can look at the same scene, but never know what the other is seeing.

In particular, I wonder about Benjamin’s brain. We know its structure, thanks to the MRI scanner, perhaps more intimately than that of most brains. We know the pattern of his brainwaves under an EEG. But we don’t know what he’s seeing, hearing or thinking. Does he dream at all? Does the world seem hazy and distant, or overwhelming in its Technicolor clamour? Perhaps he’s taking in everything around him, but cannot control his muscles enough to respond in any way. Perhaps he’s frustrated, trapped: that is my worst fear.

Actually, he doesn’t seem frustrated at all. Most of the time he appears relaxed, contented even. I hope that means he’s happy with whatever it is that he sees, hears, feels and thinks. But placid and unmoved as he may be, it’s hugely important that he’s given every chance to communicate, to learn ways in which he can influence his surroundings. We must make every effort to understand what he’s trying to tell us, even if he doesn’t know he’s trying. To spot the nuances in his awkward hand gestures that indicate the difference between reaching out and pushing away. To feed back to him that he can influence his surroundings.

Benjamin has a “BeActive Box” also known as a “Little Room,” which is a basically a three-sided, Perspex-roofed fish tank in which he can play. The idea is that it both blocks out disturbance from the outside world and amplifies any movement or noise that occurs inside the box, so Benjamin can get the maximum feedback possible from any movements he makes and any toys he touches. Whether or not it’s working, he certainly seems to enjoy “his box” as we call it … he usually falls asleep in there.

He’s also recently had a few sessions with an iPad: just touching the screen, exploring cause and effect, making a firework explode or a xylophone “ting.” It’s easy to read too much into it, to think he’s interested, he’s trying, he knows that cause does lead to effect. Yet, we have to assume that he is engaging, or we would never do anything but plonk him in his box to sleep… Maybe one day he will even learn to use that iPad to communicate using his gaze. I’m grateful that we live in a time where such things are, at least technologically, possible.

Far more important than technology are the many wonderful therapists and teachers who visit us to help unlock Benjamin’s brain. They’ve bombarded him with sensory toys, and me with a host of new languages: BSL, Signalong, Makaton, Canaan Barrie, TaSSeLs. Given his apparent visual impairment, I’m focusing on the tactile signing systems, at least for communicating to Benjamin. If we can be consistent enough and committed enough, he may start to associate signs with events. For him to communicate with us, to start to teach us what he is feeling under that unruly mop, we must learn to interpret his expressions, body language, and vocalisations. So far we understand smiles, grimaces, a cry for hunger and a cry for pain. An open mouth means “yes” to food or milk. A batting of the right hand means he wants to play. Extension of both arms may indicate discomfort. Eighteen months and I have learned six, maybe seven of his “words.” It’s slow, slow progress and a demoralising success rate. But we have to keep trying if we are to keep our dreams alive.

What's going on in there?

What’s going on in there?