Sunday, 14 January 2018

Blog Birthday

Stephs Two Girls January 14, 2018 #UKBA18, autism, Blogging, Pathological Demand Avoidance, PDA

My first ever blog post was written exactly eight years ago today.

Pretty self-explanatory, it was titled 'Today - a diagnosis of autism?'.

It was written on the very day I had taken our youngest daughter Sasha to see a paediatrician. She was just 2 and a half years old.

Sasha, January 2010, around the time of her autism diagnosis. That summer dress features in one of the posts linked below!

There was obviously so much going through my mind that day. I guess it's fair to say there is still always a lot going on up there. There were no pictures on the blog in the early days- don't think I knew how to do that! I may have refined some of the ways in which I blog, but the main purpose is still the same - a diary for us, and an education for others.

For the first two or three years I had very little idea about the big blogging community that was out there, and consequently I don't know if anyone other than my mum was reading my early posts. Probably just as well... it took me a while to figure out how to reply to any comments, so apologies to anyone who did comment in the early days and who may have thought I was ignoring them. 😳 Now though, I'm part of a large community of bloggers, who all support and inspire me in different ways every day.

It's actually really interesting for me to go back and read my old posts now, to see just how far we've come. There were posts about sensory issues and 'unusual' behaviours. The first post about why I named this blog the way I did (with hindsight, it could have been something more helpful from a social media point of view!).

Steph's Two Girls back in June 2010, year of diagnosis. Note the summer dress...

I have bittersweet memories of some behaviours (repetitive Dora book reading for example) and I can appreciate that in many ways life has got easier as Sasha has got older.

There are of course different issues as Sasha matures though. Schooling is the main concern right now, but I'm aware that there are even more challenges approaching from the horizon. These may be less physically demanding in some ways, but I suspect they will be mentally more stressful for everyone.

So after eight years of blogging, what has changed? I've attended a handful of blogging conferences and I'm now aware of what I should be doing... SEO keywords, broken link checking, how to write a fabulous title (that post 'what to do after a diagnosis of autism' or 'Top ten tips for after a diagnosis of autism' is still waiting in drafts...). It's finding the time to do it which is still a daily struggle.

My overall blog design has changed a little along the way but not hugely. I was amazed and delighted to be nominated and then voted into the shortlist for the UK Blog Awards 2018. I guess what I'm most proud of is how my writing style has not changed all that much. I still write from the heart, about our experiences, in order to help both Sasha and other families.

'I owe you an apology. I confess I watched your update and then read your blog and felt a pang of resentment. I wanted so badly to feel the good will sensations and share in your relief and excitement but instead I dipped into 'its not fair' and 'why not us' and 'am I doing enough' despair, Fortunately, despair was followed closely by anger and in this case the anger I felt was motivating. So, pulling up my big girl pants I once again took on the seemingly never ending battle with our LA....AND.... this time they listened. So Thank you. Thank you. Thank you. For continuing to share your personal battles and journey, even when it is heart wrenchingly painful to read, it is thought provoking, motivating and reduces the isolation we as parents in these positions can experience. Fingers crossed for you in the next steps your end. Might actually find the time to update my bog today with our good news too! Inspired to keep going, thanks to you x'

The above is one comment I received recently via my Blog Facebook page, but there have been several others like this over the years. Every comment means so much to me, and spurs me on to carry on sharing. Every reader who takes the time to learn a little bit more about Pathological Demand Avoidance can make a difference.

Next week I'm going to restart my series called 'This is our PDA story'. I ran this for a total of 21 weeks over the past couple of years; it's where I open up my blog and invite others who are also living with PDA in the family to share their experiences. I've read these stories already, and I can tell you that some are sad, some are pretty hard-hitting and some will only be fully understood by those who live through it. These experiences will be posted weekly in the run-up to the PDA Society conference being held in Birmingham on 18th April this year. I hope that my readers will offer comments of support for these writers who have experienced some very challenging times. Life with PDA is described as being like 'walking on eggshells'; it's not in any way like typical parenting and it is exhausting.

I've joked in the past that this blog has been like free therapy for me, but in actual fact that is pretty close to the mark. It has been amazing, it's been fun, it's been hard work, but most of all it has been us. Here's to the last eight years; I hope you'll stay with me for the next eight!

December 2017

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?