A mixed bag

We’ve got a lot going on just now. (Don’t we all, I hear you cry, that’s just the nature of things…). As you know, we are counting down the days until our six-year-old daughter, Onna, has her bilateral cochlear implant revision surgery – just five days to go now. We have been waiting until the half term holiday starts (later today) to tell Onna and her twin sister Sala about the operation and the challenges Onna will face during the recovery period afterwards when she will have no hearing whatsoever for a few weeks. We didn’t want to tell them while they were still at school for fear that, out of innocent curiosity, the other children might ask some altogether too direct questions about the actualities of the surgery – not something we want Onna to think too much about. I’m not looking forward to telling Onna and Sala because I know they will both be fretful about what lies ahead, as indeed we all are, although Ian and I are aware that we need to mask our own anxiety for the sake of the children. In addition to planning the practicalities of surgery day for Onna, we have to plan ahead for Sala too, because we do not underestimate the impact that this experience may have on her. She is such a caring little soul, who adores her twin sister, and while she will face the day and what follows with stoicism, we know she will feel it keenly.

But first to more uplifting events. Enter Digby, our gorgeous new puppy (a.k.a. Digby-Dog, Diggers, Little Man). We have been talking about getting a dog for a long time – we feel it is so important for children to grow up knowing and loving animals – and what better time than this? We decided now was the ideal moment and we were so fortunate to find Digby just when we did. Ian drove to Wales to collect him last week (what a stroke of luck, nipping in and out of Wales just before it locked down completely) and we have all been besotted ever since. Digby will certainly be a playful distraction and ideal companion for Onna and Sala during the next few weeks of upheaval, and a wonderful friend for life – Onna has already informed us that when she is a grown-up, she is taking Digby to live with her! She has finally found someone who loves to play rough-and-tumble games and to run, run, run as much as she does, and they tear around the house and garden together causing havoc. Sala is still a little more timid with Digby, especially when he’s in an excitable mood, but she is equally enamoured in her own gentle way by this beguiling little black Labrador. Already in one short week, Digby has certainly brought both joy and chaos to our home, and the necessity for extra vigilance when it comes to Onna’s cochlear implants – I know from Facebook conversations that many a precious hearing device has been chewed up by puppies!

Onna’s surgery is scheduled for this coming Wednesday, at Addenbrooke’s Hospital in Cambridge, the same place where she had her initial surgery four years ago. Ian and I just had the pre-op call from one of the nurses who will be caring for Onna on the day (as well as doing her COVID-19 test on Monday). The purpose of the call was to go through a long list of medical questions to ensure that Onna is able to undergo the general anaesthetic as safely as possible, and also giving us the chance to ask any questions. A huge shoutout to the Addenbrooke’s team for their attention to detail and making us feel as comfortable as possible about the impending procedure, even asking whether Onna lipreads (yes, very well) so that they can ensure all the nursing staff involved in her care on the day will wear clear visors instead of masks. After Onna’s COVID-19 test on Monday, our whole family will self-isolate until Wednesday, when we have to get to the hospital at 11am in preparation for a 2pm (or thereabouts) start to the surgery. Frankly, I just can’t wait for it all to be over now, and for us to be out the other side and looking ahead again…

This past week, we have also been making the final preparations for Onna’s EHCP review, which will take place in November. Although I am not familiar with the systems in other countries, I believe an EHCP (Education and Health Care Plan) in UK is broadly similar to an IEP (Individual Education Program) in the USA and an Individual Education Plan in Australia. These plans seek to ensure that children with disabilities and/or special educational needs receive the requisite support and don’t “fall through the gaps”. In the UK, the EHCP has replaced what was formerly known as a ‘Statement’, and from what I gather, the EHCP is a great improvement on its predecessor. I like the fact that (quite rightly) parental input is a key part of the EHCP, which I believe was not always the case in the past. The EHCP review is an annual exercise to analyse Onna’s progress, targets and support requirements; the review is then used to draw up the final Plan. Like most parents of children who have to work extra hard to achieve the same results as their peers, I find this kind of assessment quite stressful because, in order to ascertain what is the next step, you have to test the limit of your child’s current attainment and focus on what they still cannot do, rather than celebrating what they can do. It can make upsetting reading because, instead of seeing your child as a complete little human being doing incredible things and developing into a radiant personality full of joy and optimism, you are forced to look at her in terms of boxes that can or can’t be ticked, percentages compared with ‘average children’, targets fulfilled or missed. It can feel soul destroying. I know it’s necessary in order to devise the best ongoing plan for Onna, but it is still tough. Considering her challenges, Onna is good at reading, but she’s behind in maths, which (ironically) requires a good command of fairly complex language. Momentary panic – Help! How will she ever cope in the big wide world? Then I pause for thought and remember, she’s only six years old. Her rate of progress now across the board is accelerating exponentially, in speech and language, social interaction, confidence and general development. Yes, she’s doing just fine and she’ll get there. It’s all too easy to get caught up in the figures and percentages and not see the big picture or the whole person.

I am aware how incredibly fortunate we are to live in a country where there is multi-layered support for children like Onna. I know the system is not perfect, and the degree of support varies; winning enough support for your child can sometimes feel like a lottery. We’re lucky. I feel like we have won the jackpot, for we have such an amazing support network around Onna. And while the system in UK inevitably falls short in some areas and there is always room for improvement or an argument for more funding or different funding priorities, the truth is that, compared with most countries in the world, the support here is nothing short of remarkable. I never forget the harsh reality that, had the lotto of life placed her in one of any number of other countries around the world, where there is little or no institutional support for children like her, Onna would have been consigned to the shadows, labelled ‘deaf and dumb’ and all but forgotten by the system, but not here – here she is supported and cherished, and we are able to hold out high hopes for her. And for that I am enormously grateful. Ian and I have also worked hard as her parents to extend this circle of support and to reinforce everything provided in Onna’s formal therapy and educational settings with support at home – no matter how much government funding or professional support is provided to a child, without that central, fundamental piece in the puzzle – support at home - the jigsaw can never be complete.

Into this week’s eclectic mix, I throw another tidbit: I have been reviewing the proofs of my new picture book, LING LING BIRD Seen and Heard. To be honest, this has been an exciting time for me. I have wanted to do this for so long; writing has always been a love of mine, and to combine it now with a cause I feel so strongly about and a subject matter that our family literally lives each day is so rewarding. To finally be so close to publishing this book (the first of many inside my head) is truly gratifying. The book is ‘ready to go’ now and I have wrestled with the decision of whether to launch it before or after Onna’s surgery. I have decided on the latter, so that I can focus on my family now, and then, once we are all through these choppy waters and out the other side, I can put my mind more freely to the release of my book, which in turn launches my new company and a host of other books to follow.

You can read about Ling Ling Bird and the new book here, and I’ll definitely also be writing and talking some more about the inspiration behind the story prior to publication day on 17th November. In the meantime, here’s a little sneak preview: