I started blogging two and a half years ago by default really. I didn’t even know ‘mummy and daddy blogs’ existed. There was barely a mention of them on Facebook back then. Now my news feed is littered with shared posts – some funny, others sad, lots truly inspiring.
It began when a support group I joined was asking members to share their experiences for a new awareness day about undiagnosed children. Suddenly I had access to a raft of special needs blogs and was flooded with a sea of voices explaining so eloquently all the thoughts and emotions that were jumbled up in my head.At first I only shared my blog within a private blogging group and the closed pages of the SWAN UK Facebook page. But then I started reading other blogs – a vast array of them – covering parenting in all its glory and I loved the ones that used humour to drive their point home. So with trepidation I made it more and more public.
Soon I became part of a small corner of the parent blogging community (there are literally thousands of parent bloggers out there) and made some lovely friends in the process.I loved writing about all aspects of life as a parent – not just as a mum to a child with additional needs.
Writing about this strange new world of disability and special needs was incredibly therapeutic. It helped me navigate more effectively through the early peaks and troughs of life with Gabe and I met many people in the same boat so felt less isolated. The bonus was having a vehicle to convey some of my erratic emotions to friends and family in a way that I would never have been able to articulate face to face.
So all in all it’s been a massively positive experience.
Special needs blogging.
Blogging in general.
But now I find myself at a cross roads.
At nine and seven, my two oldest children are reaching an age were I am reluctant to write about them. Children (pre-teen and teen) can be brutal and I am not sure I want any of their friends stumbling across this blog and having any ammunition on them. They are material rich but posting about their ups and downs with friends, schooling issues and their ‘test the waters’ behaviour is not fair. I think (at times in their life) the fact they have a brother that goes to a special school will be enough to raise their heads above the parapet without me providing more fodder for them on here.
If they decide to raise their own heads then all power to them. But that decision will be their own.
In the past six months I have therefore been subconsciously centering the blog more on Gabe.
Which by that definition makes it a different read. Now I’ll post about a road that a lot of parents don’t have to travel on.
But that’s okay, I thought. It is good to raise awareness. Share the experience so to speak. Perhaps even reassure parents starting out on this road that it’s not always bumpy. Sometimes it is. You might even get whiplash. But not always.
But then I read an article by disability campaigner Carly Findlay called “Parents blogging about their children with disabilities: it is a fine line between awareness raising and shaming” and that kind of halted me in my tracks.
Carly has a genetic skin condition called ichthyosis and in her post she said that she would be mortified if her parents publicly overshared about her condition as a child or an adult. She added that: “There’s been a recent influx of well-intentioned yet saccharine personal and mega-blogs devoted to disability stories told by parents. These sites ultimately provide support to parents and carers and medical professionals, rather than people with disabilities. writers are new parents – new to the experience of disability – conquering life one inspirational meme at a time. And most articles by parents outshine the articles by people with disabilities. Intent on educating at all times, parents have become our voice.”
I have to be honest and say that initially Carly’s post proper pissed me off. I thought of all the times I’d mentally applauded a post from one of those “well-intentioned yet saccharine personal and mega-blogs” and how they helped me gain much needed perspective.
I also felt like ranting how can you know? You are not a parent? Yes, you have a chronic condition? And you are awesome. You are. But how can you know what it feels like to face the prospect of caring for a forever child? The back-breaking endless turmoil that it brings? The grief? The misplaced jealously? Losing yourself and finding a new version. Most of us stronger and tougher. But sadly, some of us not.
Surely sharing our experiences honestly, the good and bad, can only be a good thing. The quicker we accept the new normal and get busy with enjoying life again will be beneficial to all including our disabled/special/additional needs child. To quote a friend, when facing a plane crash we need to put our oxygen masks on first before we can help our children.
And who better to bridge the gap and debunk the myths between the able and disabled world then the parent that sits in between the two.
But when the initial annoyance wore off, I realised that she had a point.
And it was not her post, but the way she made me feel that pissed me off.
I felt a bit dirty – embarrassed and ashamed.
Like I had made a mistake.
That none of my reasons for writing were about Gabe – but all about me.
Because she is right. Although Gabe can’t speak for himself right now (and might never be able to) his story is his and his alone.
Do I have the right to share it for him?
So after a month of not knowing what to write so writing nothing, I am grateful to Carly for making me think more about the child in this blog. About his dignity. The digital identity that I have made for him. I am grateful to her for making me question the reasons behind this blog.
Perhaps I should never have shared his name, or his photograph, never detailed his complex medical history or spoke about the bad days. Maybe it should all remain private. Left for people to wonder about. Maybe the many amazing connections I have made through writing this blog are not worth the risk that one day he would be “mortified” by this. Because even if I took the blog down, remnants would remain elsewhere. Social media casts a wide net.
But is blogging about your experience as a parent – whether your child has additional needs or not – such a terrible thing? Come on – there are much worse things that parents do. Is it any more damaging then posting pictures on Instagram or statuses on Facebook? The world is changing – who won’t have a footprint as the digital revolution takes the word “privacy” and throws it into the air to land in pieces at our feet. We are all going to paste back that definition in many different evolving ways.
I am even sure my eldest two will make many a social media faus pax in their teens all by themselves without my help.
It is such an interesting debate though and I don’t have the answer.
For now though, I do think Gabe’s story is a story worth sharing.
I will keep revisiting my decision because maybe my urge to keep on writing is overshadowing my judgement in this.
He is different. And people are scared of difference. Maybe because we keep on insisting on creating this ideal world were nothing goes wrong. Where children are only worthy of discussion on their 18th birthday when you have their consent form to hand. Is it that healthy for every negative experience that shapes us to remain behind closed doors were we consume it alone? Where it is never openly discussed?
If I didn’t write about him, yes his dignity and privacy would remain intact, but who would ever know the joy he brings to our lives, how we adore him, that his disability (in our humble view) is not as scary as you might think. That most days it is all bog standard run-of-the-mill.
In a society where everyone seems to want everything picture perfect, I think it is important to celebrate differences. Shout about them from the roof tops even.
Because no matter how many filters we put on our lives, we all have flaws, imperfections and foibles. Whether we are naughty over-sharing parent bloggers, earnest campaigners, social media shunners or just normal folk getting through the day the best way we can – sharing an experience, a giggle, a cry along the way – worrying about what it will all mean in ten years when we get there.
Everyone is different. And how interesting and rich the world is for it.
Hello. Can I report a crime. My mum has been “sharenting” again.
Please come quick. While you are there can you arrest her for her mum dancing please!