Fifteen Years of Blogging. What next?

Fifteen years.

It’s been 15 years since our younger daughter was diagnosed as autistic, at the age of two. 

Fifteen years ago I turned to a computer and started this blog. I was trying to make sense of the news our family had been given. I knew I wanted to explain our daughter’s actions and reactions, to other people who were not seeing what we saw at home. If you’d like to read my first ever post, you can find it at Today - a diagnosis of autism?

This photo was taken when the girls were around 8 and 6; I loved it at the time so I added it as my blog header (thanks to a very brilliant friend who is great at design) and kept it there ever since. 

I wrote a lot of posts in the first couple of months, trying to describe our family life after this diagnosis. I wasn't sharing the blog widely at that point, mostly only with family and close friends, so I guess that most people still haven't read those early posts. They were like short streams of consciousness, snatched moments from a tired mum at the end of the day, or while the girls were napping (very rare, in our younger daughter's case!). 

If you're interested in looking back at how those early days went, here's a short list with links to some of the posts (and if you search Steph's Two Girls January or February 2010 you'll find more!). They come with a disclaimer though - it was fifteen years ago, and I was on a steep learning curve about autism. These days I might wince at some of the language used or the thoughts I had, but it would take a loooong time to go back and edit all 872 posts on my blog!).

Day 2 - denial?

Day 3 - log of events from referral

Mum always knows best

Tearful - and effect on siblings?

PMA - Positive Mental Attitude and log of events

Going round in circles

'normal'? clothes - ok only if it's a summer dress.

I'm sharing these posts for the same reason I've carried on sharing on my blog for fifteen years - in the hope that they might just help another tired parent who feels their child is reacting differently to how they might have expected.

I knew nothing much about blogging at the time - my younger brother had started a blog (about football and politics, not related!) and I impulsively decided an online diary would be easier than handwriting. I signed up for a free blog (via Blogger.com) and fumbled my way through the technology. A learning curve that wasn't quite as steep as the autism one, but a curve that has continued over the last fifteen years much like my learning about autism. Blogger was a great choice and is still an option for anyone interested in telling their story - a free service which has meant the blog has not cost me very much other than a couple of small redesign fees, times when I've needed help, and to keep the original domain name (ie stephstwogirls.co.uk).

It took me a couple of months to figure out how to add photos to my posts, and a few more before I could add links to relevant information I hoped would help other people to understand better. It would be two whole years later when I first started writing about Pathological Demand Avoidance, after stumbling upon the PDA Contact Forum (which has since turned into the national charity for PDA, the PDA Society) and realising that the descriptions of PDA characteristics fitted our girl like a glove.

For a few years I enjoyed being a part of the wider blogging community, using my blog as a release or 'free therapy' but also as a way to enjoy unusual experiences, both with the girls (for example, see Moshi Monsters party) and on my own (see Cooking with Gino D'Acampo). I worked hard to create these opportunities, spending hours online writing and figuring out social media along with the technology side of things. It felt like it was almost becoming a full-time job, and I worried that I wasn't paying the girls enough attention - but of course the bulk of the work was done in the evenings, when they were settled. The work did lead to some benefits - winning a Center Parcs holiday and receiving both a tumble dryer and a Shark vacuum (we have been using both of these for over eight years!) in exchange for honest reviews are a few that spring to mind.

Eight years ago I was approached by a publisher, asking if I’d be interested in writing a book about PDA. I wasn’t sure at the time, so I declined the offer and life moved on. But the seed was sown. Three years later I signed a book contract and began to try to formulate chapters of our life following that diagnosis. The final book, PDA in the Family, was published last year.

Last year was a bit of a roller coaster for several reasons, and I didn’t do as much to promote our book as I should have. I guess that’s life though. And in all honesty I would make a terrible sales person so having to shout loud about our book was never really on the cards. Even thinking about organising a book launch brought me out in a cold sweat, so much so that I ended up just having a few drinks with some of my oldest and more local friends. That was a lovely evening, filled with love and support and a handful of photos were taken, including this one:

I think there were possibly other people who have supported me who would have liked to come too but a bigger gathering would have made it much more complicated. I'm not a confident person and part of me thought that others would not be that interested in a book launch for someone they didn't know well personally anyway. I have to admit that I'm still a little bemused by the fact that some people I did invite didn't even bother replying... I guess I've learnt a lot about people too over the last few years but will never understand everyone! 

Although I could have made more money than I did from blogging, that was never the main aim. There were always two goals; the first was to help people understand our younger daughter better in the hope her path through life would be smoother, and the second was to help other parents who had children similar to mine. Thirteen years ago, I knew that PDA was a term and a diagnosis that so many people still hadn't heard about - parents and professionals alike. I guessed that sharing our story would help others feel less alone and that thought drove me to type more. My plan was never to make a living from writing. Which is just as well, because I haven’t (fun fact - I earn not much over 50p per book on average).  

Although it makes me squirm to say it, I’m going to admit I am proud of having written the book. Is it a masterpiece? No. Do I think I could have written it better? Yes, if I’d have had a couple more years. But actually I was happy to be able to draw a line under it. Date-wise it goes up to when our girls are aged 16 and 14 - they are 19 and 17 now, and this leads me back to thoughts on the blog.

I know there are some people who don't like my blog. Some don't believe in PDA as a 'label' (they clearly don't have PDA children), some think I've done this because it's all about me, and me wanting attention, and some don't believe I should have shared information about our family online. There's probably other reasons why some people don't like me and my blog, but as a result of being here, doing this for the last fifteen years, I've made a pact with myself to try not to overthink it all. I don't regret my decision to start it at all. 

Lately life has led to much soul searching and wondering about what comes next. It is harder to write anything these days; one reason is the age of our girls and the fact that I truly believe their stories are now theirs to tell, if they choose to. Even if writing was easier, it feels like it has become harder to make it visible, with social media outlets becoming more fractured and less predictable in terms of who gets to see or hear about any helpful information I may have. TikTok was a band wagon I didn't jump on, because my girls asked me not to. So whilst I've always known there's a big market there and that it would be a good way to spread news of PDA and our book to more people, I didn't go all in (but couldn't resist the odd post or two, with their approval!). 

I also know that times have changed and that lots of people prefer to absorb video rather than the written word, but I know my limitations and I am not the best in front of a camera. There are others who are spreading the PDA word brilliantly in this way and I couldn't be happier about that. So many I could recommend, but here's just a few whose content I've been seeing a lot lately (we all know the algorithms have a mind of their own though!) to start with:

Kristy Forbes (adult PDAer), Toren Wolf (a young adult PDAer who is similar in many ways to our PDAer), Happy Hands with Hallie (Nicola has a young daughter who reminds me in many ways of our girl when she was younger), ASD with a G and T (Lisa has written a brilliant book that I will be reviewing soon), and my two fab blogging friends Danielle from PDA Parenting (who is running some great webinars for information and support for parents of PDAers) and Becca from A Boy Less Ordinary (who writes brilliantly about caring and coping with distressed behaviour. Probably all to be found across most forms of social media, although I mostly view their content on Facebook and Instagram.

I feel like I owe long time readers an explanation for the quietness and lack of 'content' of late. I don't want to just 'slip away' and disappear off the internet altogether but I'm still considering my way forward with all of this, as a parent of a young adult. After so long in this 'business' I know what I could do to increase viewers and gain 'followers' but that has never been my aim, it wasn't directly about building me or 'my brand', it was about helping more people to understand PDA.

So much has changed in 15 years. Not just in our family, but in the wider SEND arena. I vividly remember going to a local meeting about SEND law a few years after our daughter’s diagnosis, and when a couple of older parents stood up to complain about the state of non-existent services, I have to admit that I felt they were being very negative and dismissive of people who were trying to help.

Now, I feel like I have morphed into that bitter parent. Hindsight is a wonderful thing, isn’t it?! Of course there has been change in that time, but not a lot of it for the better, it would seem. Disabled children are often still held back, not given the education or opportunities that other children have in life. There is much more I could, and probably will, write about on this front. Education, and the actions of local authorities, are still like a bee in my bonnet. 

Last week I was delighted to be invited to share our PDA experiences in person with staff at a local secondary school. More than half of the support staff there had never heard of PDA and I'm sure that's true in many schools. I'd love to be able to do more in-person training like this (although online is also good - I'm doing an online training session for local parents tomorrow). I've also really enjoyed speaking on podcasts over the past year, so I hope there's more of those I can do too - please do feel free to suggest me if you can think of anyone who would like to have a chat!

As parent of a child soon to enter 'adulthood' (whatever that may be) I feel there is so much more that communities could be doing to help, particularly over the teenage years. Mental health, ARFID, ADHD and more are topics I am sure I will want to type furiously about, and book reviews will remain a feature when I have time. I feel like I need to use this blog for good, and there is much in it that I can and will revisit, such as my series about children who are Not Fine In School.

Last week I woke up to this lovely message in my inbox. It filled my heart and put a spring in my step. I can’t pretend there haven’t been days when I’ve wobbled about writing this blog, and our book. The blog would be relatively easy to delete but the book, not so much. 

There have been several messages over the years; I'm happy and relieved that I have mostly seen the good side of the internet. There's one very critical (mean-spirited) review of our book that did upset me, but mainly because that person will have dissuaded some (but hopefully not many!) people from buying it and understanding more about our PDA Story. I will never stop appreciating people who take the time to write messages like this one above. They remind me that sharing and writing the blog and book has helped not only my family, but others. And that’s why I carried on doing it for so long. Thank you to everyone who has ever read, and supported us ❤️

As always, there is so much more I'd like to say, and type, but in case you've all fallen asleep by now, I'll stop.... if you haven't yet bought our book (did you know Mr C wrote a chapter too?!) then you can find it by clicking on the photo below (available as paperback, on audible (read by me and Mr C!) and for Kindle):

This is an Amazon affiliate link which means I earn from qualifying purchases but it won't cost you any extra

I'll leave you with a quick way to access some of what I feel are the most important posts I've written about Pathological Demand Avoidance. Top Ten information posts about PDA (Pathological Demand Avoidance) gives more general PDA information, backed up with just a touch of our personal experiences.