Blogging about my children is something I do all the time, and amazingly, they all still talk to me! If you read anything I’ve written about them, I hope you’d get the impression that I’m being completely open, honest and spilling the beans as things happen, but actually it’s a lot more complicated than that.
In my early blogging days, I never even mentioned the children. The blog was all about my breast cancer treatment, intended to keep family and friends up to speed with what was happening, but in a way that meant I didn’t have to field dozens of concerned phone calls when I was up to my eyes in chemo. First major error – I set the privacy controls wrongly, and before I knew it I was getting dozens of supportive messages from complete strangers from all over the world. Oops.
The only way I dealt with having cancer was by finding humour in the absurdities of treatment. Here’s one of my very early blog posts. Even on the worst of days, somehow the funny little things would find a way to creep onto the page and cheer me up. The people who read it continued to contact me. They shared their stories with me too, but privately, in messages and emails. Many were going through similar cancer battles to my own. Some felt that the way I wrote made them feel less alone and isolated. Some were even kind enough to say I had inspired them to believe that they can get through this, and that somehow, I’d given them hope. It’s hard to convey how reciprocal these feelings are and how much they inspired me to keep going too. This didn’t feel like “my” cancer anymore, it was “our” cancer, and I felt so much warmth and goodwill in the world flowing in my direction from all these lovely people, that the whole cancer thing just felt so much easier and more doable.
Meanwhile, the children still barely got a mention. My children all have disabilities, we had many more struggles than most people, but very few people knew that because I guarded their privacy like only a mummy tiger can. Nobody could have guessed that one of my sons was going through the darkest times, right in the middle of a three year mental health hell where all he wanted to do was to kill himself. There was scarcely a word about Toby and all his complex needs, his challenging behaviour and all the difficulties that come with a non-verbal teenager who has the cognitive capacity of a two-year-old and who needs round-the-clock care.
Then two things happened that changed all of that.
Firstly, nine months after the blog started, they discovered that I’d lost the battle with cancer treatment, and that the cancer had spread to my spine. This meant I would be looking at around another 26 months on this planet if I was very lucky. Treatment would continue, but the goal posts had changed. It was about prolonging life now, a cure was no longer an option.
Then Toby became gravely ill. So ill that we thought we would lose him. Earlier in his life, he had had 38 long admissions to hospital, each time he was so critically ill that on many occasions we were advised to call the family in to hospital to wait with us until the end. His first six years had been spent mostly in hospitals all around London and beyond. But he’d had over 10 years of relatively reasonable health, and although we’d always been warned that he was unlikely to make it all the way to adulthood, I wasn’t prepared for this. Still reeling from my own difficult health news, for three long weeks I barely left his bedside night or day, willing him to pull through.
Then I wrote about it, simply calling the post “The Thirty-Ninth Time”. Hundreds – and I do mean hundreds – of people wrote back. They were praying for him in churches, synagogues, temples and mosques around the world. They were lighting candles for him. They were sending healing thoughts to him. They were making beautiful gestures, both secular and religious, of solidarity with him. One of the most life-enhancing things about blogging is to know how many good people there are in the world. People – complete strangers and often thousands of miles away – felt a connection to my little family, and they wanted to do whatever they could to help. The only way to thank them is to keep blogging, to keep that connection, and to know that, in so many ways, we are much more connected to each other than we’ll ever truly be able to understand.
Toby got better. It took three long weeks of hold-your-breath horror, but eventually he turned the corner and came back to us. However, something fundamental had changed in those three weeks – Toby had hundreds of people rooting for him, believing in him, and wanting the very best for him. In the same way these wonderful people had always carried me through the worst of times, they had done the same for Toby.
Unless you are very close to people with a learning disability, it’s difficult to understand just how incredible that felt. In our society, people with a learning disability are not valued, they are often ridiculed and abused, and they have a very low social status. Suddenly, it seemed as if the whole world was with Toby, accepting him on his own terms for who he is, wanting the very best for him, celebrating his recovery alongside his ever-grateful family. He was like a mini-celebrity, and even though he has no understanding or awareness of any of this, I knew that something very important was happening indeed.
Of all the minority groups who have traditionally faced prejudice and discrimination, people with a severe learning disability are the poorest of relations. Their sometimes different behaviours, their impaired communication skills and their reduced capacity to process information makes it harder for other people to feel comfortable around them. This builds barriers, increases their isolation, and even the most well-meaning of people are often fearful of attempting to get to know them because they just don’t have the knowledge or confidence to know where to begin. Less well-meaning people can be thoughtless, cruel and abusive towards them. People with a learning disability have a cognitive impairment, they generally don’t also have an emotional impairment. Most of them have the capacity to feel hurt, insulted, disliked and judged by others, something they often have to deal with on a daily basis.
Yet here was a huge army of people caring in a really touching and affecting way about Toby, simply because I’d written about him from my perspective, as a frightened, worried and heart-broken mother. I was humbled by their concern and love for him, their protective cloak of warmth and care. People from the same societies who generally shun people like Toby.
While Toby was in hospital for those three weeks, the nurses and doctors did their best, but it was very obvious they didn’t “get” Toby, they were reluctant to even try to communicate with him directly, they were nervous of approaching his bedside if I was more than a few yards away, and they didn’t spot signs of recovery or deterioration instinctively like they would have picked up on from a more able patient showing exactly the same symptoms and behaviours. If I hadn’t been there to “translate”, and sometimes to beg and plead with them on his behalf, would he have recovered at all? I can’t say for sure, but I wouldn’t bank on it.
Weeks before Toby’s illness, I had been told that I was dying. On that day, on our way home from the hospital, I broke the stunned silence in the car by saying to Malcolm, “I’d better stop talking about that book I’m never going to write now, hadn’t I. I think it’s time I got on and actually wrote the damned thing”. We both laughed, and we both assumed that it would be a book based on my cancer blog, a light-hearted book sharing with a wider audience how to muddle through tough stuff. Later that day I wrote a post about getting the news, “Results Day“.
Now I knew that I had to write a different book entirely. Bringing up three disabled children had been sheer hard work, stressful beyond belief, and it had more than taken its toll on my health and well-being. It’s not the children who caused most of the hardship – my three are amazing, wonderfully unique and fabulously interesting people. Mostly it had been the banging-your-head-against-a-brick-wall futility of being in a constant battle with the education, health and social care services, the ones who are supposedly there to make life easier and to offer support, but who often end up piling layers upon layers of extra stress and hardship to the heavy load that families like mine are already carrying.
If my blogging about Toby had made people think differently about families like mine, then I had to write a book for parents in my situation, to do something, however small, to take some of that stress away. If one other parent can reduce the stress to the point whereby they won’t put their own health at risk like I had done, it would be worth it.
The Special Parent’s Handbook was born. Three weeks later it was written, and since it came out in June 2014 it has been an Amazon Best Seller several times over. Having spent nearly a year keeping the children out of the spotlight of my blogging, here I was, launching all three of them onto an unsuspecting world.
I often tell Francesca and Adam that my role as their mother is to be a constant source of embarrassment, but this was on a different level. It can’t be easy for your mum to do that at the very same time you are trying to find your way in the world as a young adult, and I knew I had to tread carefully, and with their approval.
We came to an agreement. Anything that had happened during primary school I was allowed to share, anything that happened later could only be written about with their express permission. At every stage of the writing process, I read them – or tried to if they would listen – every word I’d written about them. If they weren’t happy, it was changed or deleted.
Adam felt that his mental health issues were important to share to help other families going through similar difficulties, and that’s why I am now able to talk very openly about how tough those long three years were. He is in a very different place now, and has put those awful times behind him. Francesca was very clear too about what she was happy to have included and what bits of their childhood she wasn’t comfortable about sharing.
Toby was in a different situation. He only knows that the book is a bit special because his picture is on the front cover, but he gets no more excited about seeing that than he would about seeing any one of a squillion family photos. The book can’t affect him negatively, it can only have a positive effect on him, and for me, it’s like my little belt-and-braces insurance policy for him.
While there is a book about him out there in the public domain, I believe that Toby is that little bit safer. People know about him, people care about him and look out for him. I always give a signed copy of the book to anyone who is caring for Toby, and now that he lives in a care home, there is always a copy on his shelf. It raises his status just that little bit, it might make some future care-worker think twice about being unkind to him, it makes him that little bit more visible in a world which chooses not to notice those with a learning disability.
It’s not just about Toby though, it’s about the thousands of other people who get a very unfair deal from life and from other people just because they have a learning disability. Writing a book which shows Toby’s mischievous sense of humour and his vitality and his capacity for fun might make those who read it feel just that little bit warmer towards others with a similar disability.
My twenty six months predicted life expectancy date came and went 4 months ago. I’m now well and truly living on borrowed time, and loving every minute of it. Words are powerful, and can change the way people think. I saw that when Toby was ill, and I want to write and speak as many powerful words as I can in whatever time I have left to show others what can be achieved with a little bit more thoughtful kindness in the world. I’m now being invited to speak at conferences, and I’m also running workshops for parents and health, education and social care professionals. Life is very good, and at the time in my life when I should be putting my affairs in order and waiting for the grim reaper to knock on the door, I’ve never been busier or felt more blessed. I’ve been lucky to have received so much, and I’d love to give it back and pass it on for as long as I can.
I’d also encourage any other parent of children like mine to blog too. The more of us who can write about the reality of our lives, the quicker things will change, and the more appropriate the services in place to support our children will become. However, there are boundaries, and finding where they are for you and your particular family is the essential first step. Here’s a list of the boundaries I keep, which may help you develop your own list of “dos” and “don’ts”.
- Whatever you write will be read by a stranger in a few minutes. Your relationship with your child will last a lifetime. What’s more important – to make a stranger laugh, or to protect your child’s future embarrassment? Don’t write about a child’s tantrum or meltdown, or any other bad behaviour episode, or anything too personal about their medical history. One day, your child might not want their future work colleagues to know about any childhood continence problems or what their poo really looked like on a bad day!
- What goes on the internet stays on the internet – and you absolutely lose any control of who reads it and in what context. Never publish when you’re angry or upset. Your judgement might not be sound and you could say things you or your family might regret you saying. A blog really isn’t the right place to wash any dirty linen in public.
- I always read everything I write to someone else I trust before it’s published. Usually Malcolm, but generally a close family member. I’m writing about all of us to some extent, so it’s not just my decision what goes out there, and sometimes someone else will spot ambiguities or possible different interpretations. I also tend not to post until the day after it’s written, to give me a chance to look at it again and make sure it’s OK.
- My children come first, second, third and last. I talk about them, yes, but hopefully always in a way that will show them in a positive light.
- However, the whole showing them in a positive light thing has to be carefully balanced – otherwise they come across as one-dimensional goody-two-shoes, which my children certainly aren’t!
- One way I’ve found helpful to explain something that’s happened without embarrassing the children is to distance ourselves from the situation. A phrase like, ” in some families like ours, this sort of thing can happen, and when it does, a parent might feel like this and a child might feel like that” can be useful. You can describe the situation but in a hypothetical context and without attributing the actions or emotions to the real people in your family.
- If I mention anybody else by name, I always get their permission beforehand.
- Sometimes, you may want to write about one of the professionals in your child’s team, or something they have done. Be careful. Don’t fill the post with your own emotions and hurt, and never ever be specific enough so that the person concerned can be identified. Even if you don’t name them, saying something like “my child’s Headteacher said” will immediately identify the person to everyone who know that Headteacher and the school. Very occasionally I’ve talked about one of the health care professionals involved with our family, but I’ve managed to write it in such a way that even the person concerned would never recognise themselves. However, once I did sent them the link to the blog post, they read it, and I got an apology! If you want to mention an incident with a professional, question your own motives and be very honest with yourself. If it’s for revenge or to settle a score, don’t do it. If by sharing an incident it might help another family, or highlight a common problem – then maybe but with a huge amount of caution. Our lives are tough enough, you don’t need to be hauled up in court on a libel charge.
- Be very clear about what you don’t want to share with the world – there are dozens of situations and scenarios that are personal and confidential. A good example of this is when Adam was in an Adolescent Psychiatric Unit and very fragile at exactly the same time I was on Chemo. Although much later, he made his own decision that he was very happy about sharing his difficult times, at the time I wanted to fiercely shield his privacy. If you read the posts that I wrote at the time, I think I alluded to some very difficult times we were going through, but there was absolutely no hint as to exactly what was going on.
- If I’m not sure about a post I don’t publish it, or I look at it again a week or so later, and maybe change it. Our integrity as a family is far more important than any falsely created urgency to publish.
- For me, with our family lifestyle, I have deliberately never posted to a regular schedule. I can’t commit to posting every single Friday, or on the second and fourth Tuesday of every month, or stick to any other sort of set routine. I can only write when I have time, and when something worth posting about has happened. I’m doing this unpaid, life has enough pressure and stress, I really don’t need to add in any extra!
- It’s supposed to be fun, and it can also be very cathartic. If it becomes a chore, don’t do it. I’ve had several periods over the past few years when I haven’t written a post for a couple of months or more, and that’s absolutely fine.
What started for me as a diary keeping exercise to keep my inner circle up to speed with my health issues has taken on a life of its own, opened doors I never knew existed, and launched me into a whole new career. I’ve met some wonderful people, I’m now part of a huge social media community, genuine, lovely people who make life even better, and all because I started a blog. Go for it, enjoy whatever happens because of it, but just be a little bit careful not to open up too much.
PS – You’ve probably noticed I haven’t included any photos of Francesca and Adam – that’s because they didn’t want me to!
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