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Thursday, 4 August 2016

To Blog or not To Blog?


Ever since the age of 23, I've periodically told my Mum that if my life unexpectedly ended tomorrow, I'd want her to know that I died happy.

That may sound a bit morbid but I absolutely mean it (may have shocked mum the first time I said it, but it's like our in-joke now). Life has been good to me; I've had many opportunities and experiences. My parents gave me the best start they could which I've totally appreciated. Becoming a mother has probably been the most rewarding part of it all, and of course I'm hoping that I've many years to go with that yet (and that the world's supply of Pimms doesn't dry up first).

So what does any of that have to do with this blog post title, I can hear you ask?

I've been writing this blog for over six and a half years now. For the past two years or so I've been asking myself the 'blog or not blog' question. And then, I came across this blog post written by a mother whose son drowned in the bath in an NHS specialist learning disability unit. If you've followed the Justice for LB campaign, you'll know how harrowing the whole set of events is.

The blogging mother blame is a critical look at what part social media, and the blog, may have played in the events which followed for that mother. At the very least, she was given evidence that she had been watched closely for some time. There have been many times when I've wondered what effect the writing of this blog may have on either of my girls, but of course the truth is that no-one can be sure, there's no real crystal ball.

So far, the blog has brought us amazing opportunities, from special film viewings, to 'free' product to review (there's always a cost in terms of time), special eventsdriving lesson for our eldest and an award nomination for little old me - and that's just scratching the surface of what we've had. I can't deny all of that has made our life happier at different times.

But there's the dark side. The knowledge that some people don't appreciate what I write. Heck, some people don't even read it... but seriously, there's an issue with being online. Described to me once as 'a conflict of interest', the implication was that I shouldn't write anything negative, even if it is true. I'm an honest and open person, but I'll admit it's got to the point where I think twice before typing some of my experiences. That bugs me, if I'm honest.

I suspect I am already being watched. That the blog has put me on a blacklist somewhere. I'm not perfect; I've probably already written some things in error. I can honestly say that it's all been truthful though, and I'm not prone to exaggerating.

My original reason for writing was to share what our autistic girl was like with others, in the hope that they would understand and maybe judge less. It helped me, and I believe it helped family and friends. As time went on, I received emails and messages from readers who thanked me for sharing our story, as it made them feel less alone. Over a 15 week period I ran a series of posts on Pathological Demand Avoidance, to share stories from other families of how PDA affects their lives. I've wanted to write more and more about life in the SEND (Special Educational Needs and Disabilities) world, but I've found I have less and less time to do it justice. As life in a mainstream school trundles on for our youngest, there are likely to be more and more issues to contend with and probably not blog about... yet.

I can tell you now in brief about three memorable occasions over the past few years, which have stuck in my mind and brought tears to my eyes. In the early days, the very first 'professional' I told about our girl's diagnosis looked me in the eye as she said 'oh Steph, I'm so sorry'. I was stung; I didn't want her pity, I wanted her help with my daughter. The second phrase was a lovely lady telling me that 'your daughter will be alright, because she's got you as her parents'. On the face of it, this seemed like a nice thing to say, but the implication there was that there were many others worse off, who didn't have decent homes and loving and caring parents. True, but not what I needed to hear at that time. Again, I needed help. Finally, there was the nurse recently, who made a special trip back to my bedside while I was in hospital with our girl, to tell me that she thought I was an amazing mum. I'll never forget that, because it was clear that she meant it from her heart and she wasn't just saying it.

I can tell you those stories because the first two were a long time ago, and the third one is a heartwarming one. It's the other words I can't tell you, yet, which eat away at me. My mother always said 'if you don't have anything nice to say, don't say it at all', but I'm all for telling the truth, in the nicest way possible. I think you'd be shocked by some of the things which have been said to me along the way. Unless you're a parent of a child with special needs yourself of course, in which case you may have heard some of them yourself.

So the other questions still ring round my head - if there's any chance the blog may have a negative effect, why not just stop it now? What is the blog actually doing for us?

Yes we've had those amazing opportunities, but I'd have given them all up in an instant to not have had the need to begin this blog in the first place. To not have our eldest daughter crying on my shoulder, sobbing that she gets embarrassed by things her sister does, and telling me that even classmates she would consider friends at school are mean about her sister and say unkind things. I'd also willingly go back to full-time work, in the chosen career that I worked hard at for several years, to not have to try and scrape small amounts together by taking ad-hoc poorly paid jobs because I can never guarantee being available, thanks to multiple school and health appointments, and the over-riding fear that one day our youngest will simply refuse to go to school at all.

Just recently, two other SEND bloggers (Wendy at Spectrum of Life and Looking for Blue Sky) whose blogs I've followed for some time, announced they were quitting blogging. Looking for Blue Sky echoed some of the concerns floating in my head, that what I've been tending to write of late may be coming across as negative. I'm not a negative person; as per my opener, I like to think I'm fairly positive and generally happy with my lot. It's not a complaint, just fact that there is a lot more to contend with when you are mum to a child with additional needs (not least the language - just edited that after initially typing 'special needs', a phrase I'm not wholly comfortable with. Therein lies another post). I say that with confidence, because I am also mum to another child without those needs.

The last thing I want to do, is to come across as a 'poor me' person. That is never my intention. Sharing our story to spread understanding and acceptance is still the main aim of this blog. The sad truth is that sharing only the positives is not likely to achieve that, so a balance is needed. I'll apologise now if it veers towards being more negative at times of stress, but please believe me when I say it's not for pity.

I'm not entirely sure I've come to any decent conclusion on the original question, but for now I'll carry on regardless. My need to share and to spread the word about PDA and the SEND system is currently stronger than the fear of what the consequences of being honest may be. Let's hope it doesn't prove to be a bad choice. I'm doing this still, as I was at the beginning, for both my girls.


To end on a cheery note, I'm going to leave you with the fun fact that the most read post of all time on my blog is about making enormous bubbles. My one and only 'craft' post. If only I had more time...







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