The best of both worlds

It’s a common complaint among carers of children with complex needs: I spend so much time being a nurse, being a therapist, I sometimes don’t get a chance just to be a parent. I don’t want only to interact with him through a feeding tube, a syringe, and a set of physio exercises in a pair of uncomfortable boots; I want to play with him, cuddle him, enjoy him like my other children, take his boots off, rub his feet and stroke his hair.

So much of our day is taken up with Benjamin’s immediate medical needs – chest physio, suctioning, administering medications, giving tube feeds; not to mention his personal care – nappy changing, dressing, bathing – that sometimes the benefits of longer-term therapy seem so far off, so intangible, particularly for a life-limited child, that it gets pushed to the end of each day and then forgotten.

Don’t get me wrong. I appreciate – so much – the guidance of our physio, speech and language therapist, community nurses and visiting teachers. I am so grateful to be able to keep Benjamin at home rather than in hospital. And I do want him to be the best he can be, now and in the future, of course I do. But sometimes I just want to be his mum.

What if there was a way to do both?

A way to do therapy that had immediate impacts as well as long-term benefits? A way that integrated therapy into everyday life? A way that combined therapy with play, and with communication? A way in which ugly equipment has its place, but sitting together on the sofa can be just as useful? A way in which tiny changes can make a big difference?

We’ve just spent six gruelling weeks travelling back and forth through the roadworks on the M8 to Glasgow’s Bobath Cerebral Palsy Centre, to take part in their Big Lottery-funded, Right Start Programme for children aged 2-5.

We did learn exercises we can do with Benjamin on a ball, on a bench, in a stander, when we want to and he wants to and we have time. But we also learned how to warm him up before exercising, so that he gets the maximum benefit with the minimum effort. We learned how to challenge his head control when picking him up, how to raise his awareness of his own hands whilst putting his jumper on, how to stretch out his hamstrings while changing his nappy, how to relax his fists while washing his hands. In short, how to be a mum and a therapist at the same time, without even thinking about it.

We learned how to use our own bodies to support him in different positions – how boobs and a belly can be more supportive than a chair and more responsive than a ‘memoryfoam’ mattress. How to do ‘peekaboo’ or to pretend we’re going to let him fall then catch him. How to play, or sit together, or even watch TV together, without feeling guilty that we’re wasting therapy time.

We learned how small changes can make an immediate difference. Simply checking his posture, rolling his shoulders back and opening out his chest when he’s seated in his chair or in his buggy can set off a chain of muscular adjustmentsthat help him to hold his head up better, to control his eye movements, and ultimately to interact more meaningfully with those around him (if, that is, he can see past his fringe). Immediate rewards that provide the impetus to keep going even when the long term goals seem so distant.

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It’s not rocket science. In fact I’m sure most of the things we learned could have been taught by our NHS physiotherapist or speech-and-language therapist. But the six weeks of intensive contact time we spent at Bobath would take them maybe a year to achieve with their overfilled, underfunded schedules, and it’s harder to make progress without momentum.

In actual fact, I don’t think we’ve even scratched the surface of what Bobath has taught us. In the thick of an intensive course, with three hours’ driving for each appointment, on top of two days’ nursery a week and the usual hospital appointments and home visits, none of us – least of all Benjamin – really had the energy to get home and practice much more than a few stretches before bed. But armed with a DVD and a personalised instruction manual (complete with comedy photos of Benjamin and I in all sorts of positions) I hope over the weeks and months to come we’ll be able to build on the improvements we’ve already seen in his head control and visual focus, his more relaxed hands and body awareness.

I can’t thank the team at Bobath Scotland enough, for putting up with me and my army of grubby children, for supplying a good cup of coffee each morning, for treating Benjamin with respect and for believing in his potential, and for encouraging me to cut his hair.

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‘If only there was always a nice lady to hold my hair out of the way…’


The Bobath Scotland Cerebral Palsy Centre is based in Glasgow. Their Right Start Project is funded for five years by the Big Lottery Fund. But they rely on fundraising for 85% of their income in order to keep doing the work they are doing across Scotland, from the Highlands to the Islands, supporting the 15,000 people in the country with cerebral palsy and related conditions. If you’d like to support their work you can donate £5 by texting HIGH05 £5 to 70070, or you can find details of how to donate at www.bobathscotland.org.uk/donate.

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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To tube or not to tube

‘Failure to thrive,’ it used to be called. Nowadays it’s ‘faltering weight.’ Both terms to strike fear into a mother; neither does justice to our daily battle to keep Benjamin’s weight within the realms of ‘normal,’ our weekly visit to the centile graph, the results of which are dutifully emailed to the dietician in case this is the week she decides so much slippage is too much.

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From day one we knew it would be an uphill struggle. They predicted he wouldn’t breastfeed, but with his first tantalizing nibble in the delivery room, I knew he wanted to try. That first week was spent repeatedly weighing him to calculate exactly how many calories he needed to imbibe each day, then forcing that quantity of milk into him through every combination of breastfeeding, formula-feeding, expressed milk-feeding, syringe-feeding, finger-feeding. Every three hours we fended off the well-meaning paediatrician with her naso-gastric tube. Every three hours we re-calculated, expressed enough milk for the next session, and tried to snatch enough sleep to continue. Without the practical support of the nursery nurses and the encouragement of the midwives we would never have jumped that first hurdle.

After five days we were home, terrified, and clinging to that regime. It took weeks – and the support of the community midwives and breastfeeding counsellors – before I was able to believe that Benjamin really could feed ‘on demand.’ That he and I could work as a team; that we each knew when he was hungry and that his weight would continue to creep up.

The months passed. He got hungrier, cluster-feeding for a full six hours each evening, then waking during the night for more, and still the graph teetered around the danger-line. We added 200 mls of high-calorie formula each day, then 400 mls, then 600 if he would take it. We added purees, three times daily, then snacks on top of that. The graph inched up, tracking along the 0.4th centile (putting him in the lightest four out of every thousand boys of his age).

At a recent ‘Multidisciplinary Meeting’ with the community paediatrician, she looked at the neat line of weekly dots tracking the 0.4th centile and was satisfied. What she doesn’t see is the sheer effort that Benjamin, I, the whole family, put in, day after day, to keeping that line from faltering. The breast-feeding, the bottle-feeding, the oh-so-slow puree-feeding. The pureeing, the cleaning bottles, the cleaning up milk that doesn’t stay down. Some days he is so hungry I can’t produce enough breast milk. Most days I am constantly offering it when he is not interested. Every evening one of us is glued to the sofa as Benjamin glugs through his bottles. We have a freezer full of breast milk, expressed both to keep up my supply for the hungry days, and as insurance against any future hospital stay.

So we talked again, as we have at every meeting since before he was born, about tube-feeding. An NG tube through his nose or PEG into his stomach. The paediatrician seemed to imply it is as much a lifestyle choice as a medical one: if feeding him becomes too much, this is our get-out. But what mother is ever going to say to the doctors, “I’m sorry, feeding my baby is too much effort”?

Now, his graph is dropping again, away from that 0.4th centile line, the lowest on the paper. He’s lost 300g in a month – the equivalent of nine Cadbury’s Creme Eggs. Every day I wait for the dietician to call and say, “This can’t go on.” Every day I present him with my breasts, my purees, and those stinking bottles of formula. Often, more dribble comes out than food goes in.

As a recovered anorexic I have been so aware, so careful with Jackie, never to treat food as a punishment or reward; never to say, “you can’t have pudding until you’ve cleared your plate,” in the hope that she’ll retain those inbuilt cues to her hunger and satiety that I have mistreated until they are gone. Even with Benjamin, so far, I may present him with food but if he’s not hungry, there’s nothing you can do to make him eat and I am proud of him for that. The thought of putting a tube in and just pumping him full of tasteless fluids sickens me.

And he takes pleasure in his food. Real, sensory pleasure. He opens his mouth for foods he likes and clamps it shut for those he doesn’t. He clearly distinguishes different flavours and textures. I would hate to deprive him of this by bypassing his mouth altogether.

This isn’t something we have to decide straight away, but it’s something we do have to start thinking about, considering risks versus benefits, understanding what each option entails. I hope, at least, to delay the decision until he is big enough for a PEG, to spare him the discomfort and indignity of an NG tube. It’s not an all-or-nothing solution: potentially we could use a tube just for top-ups on the days he’s struggling to eat enough orally. And, as usual, just when we think we can’t go on, Benjamin pulls something out of the bag. This week he gained back 100g in weight, so maybe we can put it off for a little while longer. We will keep battling on.

Wishful thinking

I’m sure he’s purposely trying to move now, to influence his environment. When I lay him on the floor he twists his body as if trying to roll over. Sometimes I find him gripping his toy or his blanket. When I hold him I think I can feel his arms curling round, holding me back. Recently he’s even brought his hand to his mouth a few times and sucked it…

… Or did it just end up there and get accidentally dribbled on? Is this all just a mother’s wishful thinking, clinging on to some small signs of progress after eight long months when his hands and feet were permanently purple because they simply weren’t moving enough to keep warm.

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Most of his movements seem involuntary and undirected, firstly because they are often separated from their stimulus by a long period of time – I admit his responses aren’t he fastest, and secondly because they tend to go in the opposite direction from what they are trying to achieve! When presented with a spoon or a breast his initial response is to stiffen and jerk his head away, an involuntary reaction that must be even more frustrating for him than it is for me. Understandable then, that to anyone else they seem completely random.

And does it even matter? Even if his movements are completely random muscle spasms, perhaps treating them as real, encouraging, helping and praising them often enough, might just start to reinforce them. After all, that’s how we all learn isn’t it? A process of evolution. We start out making chance noises and movements, then learn to repeat the ones that achieve something or get a response, while the ones that don’t are gradually filtered out.

I guess this is a dilemma we’re going to face repeatedly: how to help and encourage him to reach his full potential (whatever that may be), without causing him to suffer by pushing him to do things he will never be able to do.

So, for now, I’m going to assume that if he can do something physically he may, consciously or subconsciously, today or some day, want to be able to control it mentally and neurologically. When he twists as if to roll over, I gently roll him the whole way. When I find a toy in his hand, I will bring it up to his face, rattle it, squeak it. When he hugs me, I hug back, as tightly and as warmly as I can and for as long as he will let me.

Call it pushy parenting, call it wishful thinking, I’m going to believe that he can do it and what’s more that he knows what he’s doing.

What’s in a name?

 

The first time we knew something was wrong, two weeks before his due date (a torrid time, but that’s for another post), we were told his condition was “microcephaly with simplified gyral pattern.” A bit of a mouthful, the consultant said, so we could shorten it to MSG. Great. My baby has monosodium glutamate, “the silent killer lurking in your kitchen cabinets” (as one website puts it). Three weeks, one birth and another MRI scan later, the diagnosis was extended to “primary microcephaly with simplified gyral pattern plus lissencephaly”. Double great. No one I know has even heard of microcephaly (which purportedly affects as many as two in every thousand people). Primary microcephaly (microcephaly due to genetic causes rather than environmental factors), of which MSG forms a small proportion, affects about one in a million in the UK.

Not surprising, then, that people looked at me blankly. There is no support group, no website, no telephone helpline for children with MSG. We couldn’t reach anyone who had been through it, anyone who could understand.

Recently our physio lent me a book – Handling the Young Child with Cerebral Palsy at Home (gripping bedtime reading). I was confused: he doesn’t have cerebral palsy. That’s when people have a traumatic birth, the baby is deprived of oxygen and the parents sue the hospital, right? Wrong. According to the book’s author, the late Nancie Finnie, cerebral palsy is an umbrella term for any disorder of movement resulting from damage to the brain before, around or soon after birth, including “brain malformations” with a genetic basis. So, although his problems are multiple and “movement disorders” perhaps the least of them, we can at least use the term cerebral palsy to describe him.

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I know some people with cerebral palsy – most notably Francesca Martinez, in a series of recent press articles – find the term too medical, too old fashioned. Martinez herself prefers the term “wobbly.” For me, “wobbly” is no more useful when it comes to introducing him to people than MSG: nobody really knows what it means. At least cerebral palsy most people have heard of and have some concept of what it entails. It makes it so much easier when people in the supermarket say, “What a cute baby. How old is he?” and look shocked when I say “Nearly eight months” (running through their heads: weird! Why is he so small? Why isn’t he holding his head up? Why isn’t he crawling around and chuckling and gurgling and grabbing his mother’s hair? Does she realise something is wrong with him?). Now I can say, “He’s nearly eight months but he has cerebral palsy so he seems younger,” and the response is usually “oh bless, what a cutie, well done, good luck.”

It’s not that I want him to be defined by his disabilities, but I don’t want to hide them, a dirty secret, either. Finally we can explain his condition to his great-grandmother. Fortunately she lives in a care home at the other end of the country and only sees him on Skype, but pretty soon, even with her limited viewings, it’s going to become obvious that he’s more than a bit behind. I only hope she isn’t too offended at being kept in the dark for so long, because we were too lazy to take the time to explain a more complicated diagnosis to someone hard-of-hearing and sometimes a bit confused.

So, to us, a label means a lot. Suddenly, we can read books that might help, we can join organisations, we can apply for disability living allowance on the assumption that the person who reads the form will know what we are talking about. But most of all we can talk to people. We don’t have to pretend any more.

The slow smile

It’s an amazing moment when your baby smiles for the first time. It’s also amazing when they do that first, definite, personal smile, the one that says, “That’s my mum, I know her, I trust her and I love her.” With my first child, it happened after a few weeks. This time, it took seven months. At that moment I literally jumped for joy, all around the kitchen.

His smile wasn’t just slow to come, it was slow to unfold: once I’d entered his (limited) field of vision a couple of seconds passed as he registered me, then a couple more as the messages passed from brain to mouth and the muscle fibres interpreted the unfamiliar command. It was all the more special for the sheer mental and physical work that went into it.

It wasn’t a fluke, I tested him: hid behind his chair, came out, gave him time … and there it was again in all its beaming, toothless, slightly lopsided glory.

The beginning of a relationship. The twinkle of light at the end of the tunnel marked, on my darker days, “thankless life of servitude to child who will never even know who you are, much less love you, much less be able to tell you that they love you.”

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I’m the kind of person who wants things done yesterday. Don’t stop, don’t think, don’t wait, God help us don’t talk about it. Just get on with it. So patience, I think, is the first thing he is teaching me. I’m going to need bucket-loads of it in the years to come so it’s as well to start learning now. And what an incentive to learn! His smile is so huge, so beautiful, so genuine, so unconditional, that one is never enough. I can spend hours (on the days when the hyperactive toddler is at nursery) coaxing, cajoling one out.

It’s going to take me a while to get the hang of this. I’m not sure I’ll go the whole hog – out there you can subscribe to “slow food,” “slow schools,” “slow books,” “slow travel,” “slow money;” and it drives me nuts when my father-in-law practices his “slow driving.” But this slow smile has got me hooked.

Mummy Times Two