Friday, 10 January 2020

Ten years of blogging; what next?

Ten years ago today, I started writing this blog. Ten years ago today, our younger daughter was diagnosed with autism (ASD - Autism Spectrum Disorder, also now sometimes known as ASC or Autism Spectrum Condition). Ten years ago I typed my first ever post titled 'Today - a diagnosis of autism?', in shock, not really knowing what to say. I just instinctively felt that I needed to document the initial news and all that would follow. 
Steph's Two Girls in the snow, around the time of diagnosis/blog start, in 2010
Steph's Two Girls in the snow, around the time of diagnosis/blog start, in 2010
I knew the diagnosis would affect the whole family, I just wasn't sure exactly how. I was as concerned about what the diagnosis would mean for our eldest daughter as much as I worried what it meant for our youngest. 

Looking back now, I wish I could have chosen a better name for the blog, but it was already difficult back then to find a website name mentioning autism and parenting which wasn't already taken. So 'Steph's Two Girls' it was. The blog started off as a very personal account of our family's experiences, as I tried to explain to those near and far how our younger daughter was learning differently.

Ten years on, so much has happened, both in terms of life and blogging, and of course I'm still learning about both as we scramble onward as a family.

I'm living a different kind of life to the one I might have expected back when I became pregnant for the first time. I say 'might have'; I wasn't really the type to have the future mapped out in advance if I'm honest. I've always been happy to go with the flow. I'm a middle-of-the-road kind of person, which on one hand I think contributes towards me being more forgettable, but I've actually grown to like the 'average' features of my personality. 

The fact I have an autistic daughter puts me in a minority and makes me stand out in ways I'd never planned for though. I didn't want to be 'that' mum. The one who always needed extra input and feedback from teachers and support staff. The one who needed to pass on information about my daughter before she went anywhere, because I knew what a difference it could make if people were prepared. The one who had to grow a thick skin and ignore parenting suggestions from other parents who were not leading the same life as us. The one who had to be prepared to ask for unusual accommodations so that it was possible for her daughter to be included. The one who felt the need to share, in order to be understood. I've made my peace with all of that though; I'm happy with my lot.
stephs two girls siblings photo plus list of top 9 blog posts

Over ten years I have published the grand total of 879 posts, with 92 still in draft, half written, to be finished one day, maybe. Of the top nine most read posts on my blog (shown above), seven are information posts about Pathological Demand Avoidance. The other two which have snuck in there include one about the movie Wonder, which does have a link to the world of additional needs and I fully recommend it, and one about how to make giant bubbles... always good to have a bit of escapism in amongst all the serious stuff I guess!
Giant bubbles pinnable picture
On the whole I've been lucky to escape the pain of trolls or nasty comments over the last ten years, although I did have to write a post recently about a personal message I received over on Instagram

My blog has been through different phases; initially it was mostly just words, diary entries, random everyday feelings that came with the differences of bringing up an autistic child compared to our first-born, neurotypical daughter. It was probably a couple of years of writing like that before I realised that there was a huge blogging community out there, and a way of sharing our story to more people. I enjoyed going to BritMumsTots 100 and Blog On blogging conferences and meeting new people, and as a family we enjoyed reviewing toys and products quite regularly. 

Then in 2012, I began to concentrate my blogging efforts on trying to spread awareness and understanding about the particular type of autism our daughter has, called Pathological Demand Avoidance (PDA). There are still far too many people who have not heard of this at all, and I've written quite a few posts since explaining why I think this profile of autism fits our girl so well. I believe there are some people who maybe don't think PDA is a real condition, and that it can be explained away with other reasons. It is slightly disheartening to know that there are some people who I'd have liked to consider friends among this group - which is why I wrote the post 'Is Pathological Demand Avoidance real?'. In our house, and many others, it is very much real and a way of life which we have had to adapt to.

The post Our PDA Story Week 35 - Steph's Two Girls is a summary which I wrote as part of my blog series 'Our PDA Story' looking at our early days and journey from diagnosis on through school. The PDA Society is the best place to go to find support and detailed information about this profile of autism - their PDA conference has been organised for this March and I am looking forward to helping the PDA Society with this. Expect more PDA content on the blog, as and when I can!

For many parents, school plays a huge part in the lives of their children from the age of four (or younger, if you include nursery and pre-school) up until sixteen, eighteen or even older if the child is able to go on to further education. We are no different in this, broadly speaking - some of my older posts tell the story of how our daughter attended a mainstream primary school until the age of ten.

Then, after a few months out of education while discussions were had with the Local Authority, she attended a different kind of school until she was nearly twelve. It didn't end well, sadly. I can't shake school from our lives; we are currently stuck in a no-man's land where our daughter wants to be part of a school, but there is no suitable school for her.

School refusal or school induced anxiety is likely to be one of the other areas I focus on in the coming months. I honestly believe that the school system in our country is broken and far from inclusive; moving backwards rather than developing in a good way. I hear from so many families with children with a whole variety of additional needs and anxiety, and they tell me about how their children's needs are not being met. I always recommend the website Not Fine In School as a starting point for families these days; lots of support and useful information can be found over there.

I didn't know much about blogs or blogging back when I started; some might say I still don't. I'm in awe of those bloggers who have beautifully designed websites and social media channels, and who manage to have a strategy, blog regularly and schedule posts in an organised fashion. I'd love to be like that but there just aren't enough hours in the day - it already feels like I spend the majority of my time in front of a screen and I just have to accept there's a limit to what I can do.

I'm no expert in the technology side of blogging still, but what I am an expert in (as much as anyone can be, given that we are all individuals with a different mix of characteristics, thoughts and feelings), is my girls. I like to think that it's the sound positive genes passed on from my parents that have enabled me to stay strong and believe in the way we had to change our parenting style. Don't get me wrong, I know I will have made mistakes along the way with my girls, just as I did with language in earlier blog posts, or the way I interacted with other children with disabilities before I understood much about them. I'm still learning as well as educating.

Over the last five years or so I have put a lot of work into building the blog via social media sharing (all @stephstwogirls) - my Facebook page has a lovely, loyal following and I receive many supportive comments from readers there, as well as on Twitter and Instagram. Instagram Stories has been a fairly new development in the last year but I'm already hooked so do expect to see more of me over there. One aspect of the online world which I haven't had time to focus on is Pinterest, so it might be time for me to give that a go... any help gratefully received!

I have so many blogging highlights from the last ten years; products we've reviewed, places we've visited and more importantly other bloggers met and friends for life made, but I guess if I had to pick one memory which stands out, it was being nominated and then shortlisted in the Outstanding category of the Tots 100 MAD Blog Awards back in 2016. *Proud face*
The MADS 2016 outstanding contribution award
This blog started as an outlet, I've often called it my 'free therapy'. It became so much more than that though; a way to educate, alongside helping other families who are facing similar struggles. But where will it lead now?

Recently, our autistic daughter created this video below in which she describes herself. I'm hoping that she will go on to produce more of these; the biggest insight into her profile of autism will definitely come from her of course!

Our eldest girl is a teenager already and our autistic daughter will turn thirteen this year. They are at that age where they would prefer not to have much detail of their lives written about, and they have both requested fewer photos. So the style and content of my blog may need to change slightly, but my current thinking is that the focus on PDA will remain the same. 

Can I keep going for another ten years?! I'm making no promises, but watch this space...


There's a lot of links to previous posts above and below here - text highlighted in pink should take you to them if you click on them. Just saying, because it would of course be lovely if people had time to click on one or two to find out more!



To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?



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14 comments:

  1. It’s been a huge honour to follow you and read every blog for some of the last ten years and I am in awe of your faithfulness to continue so long. Not only that but you consistently support and encourage so many other bloggers too . You are truly amazing and you have helped thousands understand not only your own daughter but so many others too. That’s something to be immensely proud of!

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    1. Thank you so much lovely lady - if only I had half your eloquence though ;) x

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  2. P.s that video is brilliant! So insightful and educational

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  3. I love this post Steph it is wonderful to read about your last 10 years. You have achieved so much you should be very proud. I might add I have never thought of you as forgettable, although I would probably use that same description for myself. It is amazing how many of us feel a need to write about autism after the shock of a diagnosis. I guess it is the need to share the information. You have done amazing things for the increased awareness of PDA and school refusal and I imagine you will continue to do so for many years to come. As for how the blog should look in the future I think it is clear that Sasha has a talent for graphics so if she won't let you take pictures maybe she can create graphics for you? I am totally going to try your giant bubble recipe asap. I look forward to seeing what direction your blog takes over the next 10 years.

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    1. Thank you - I do hope I'll be around for another 10 years! Good luck with the bubbles :)

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  4. Enjoyed this post and am looking forward to spending some time with your older posts.

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  5. Isn't it a journey, this blogging malarky! I started when I was trying to conceive after a 14 year gap, then it was baby blogs for a few years before I started on my current blog. Which I'm still decided on a niche for some 9 years later :) xx

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  6. Love this post Steph and I’m so in awe of you and inspired by what you have achieved, there is definitely more than 10 years to keep going for you. Always amazing that you are! Sorry I’m late to catch up lovely will get around some sharing today when I can XX

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  7. Congratulations on 10 years of blogging, Steph! I admire you for keeping at it pretty consistently for that length of time, and growing and evolving over that time. You've done a great service with all of the information and support you've provided.

    Love Sacha's animation!!! She did a great job! What a great way for her to express herself.

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    1. Thanks Yuji! I was thrilled with her video and really hope she will do more. Fingers crossed!

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  8. What a decade. You and your family are amazing and it is a privilege to have it shared with us. xxx

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