Tuesday 13 October 2015

What did you expect when you were expecting?

I can hardly believe it's been almost two years since I wrote this post below... I decided it was time to dust it off before I sit down to write another update. Everything is still relevant; my friend Steph is still battling and facing more surgery for her daughter Daisy.

There is no way we can know what to expect so we just have to 'roll with it'.....


A very good friend of mine, also called Steph funnily enough, writes her blog over at Was This In The Plan?. Steph recently wrote a blog post to celebrate 5 years of blogging. She started her blog around the time that her youngest daughter, Daisy, started having intravenous nutrition (a line inserted into the main vein in her chest). Daisy is a fighter and likes to keep her Mum on her toes - luckily her Mum is a fighter too. Steph is also maybe a little bit crazy, as she loves to run and is currently attempting to win a competition for a place in the London Marathon.. each to their own, eh?! 

I thought, as I read Steph's post, that not only do we share the same name (and definitely not the love of exercise), but that we also started blogging around the same time, and both for reasons linked to Special Needs. However, I then realised maths is not my strong point and it will be 4 (not 5!) years ago in January that I started my blog as a diary to record what was happening with our youngest daughter. It was then that a diagnosis of ASD (Autistic Spectrum Disorder) was first suggested for her. Here's what she looked like then, at 2 and a half:
I found this photo and was instantly transported back - to a time when she absolutely refused to wear socks (yes, wellies without socks in the middle of winter) but when she would also insist on wearing that same summer dress day after day. For a period of at least 8 weeks, she would wear nothing else (I managed to wrestle the tracksuit bottoms on her due to the snow, just this once). I had to wash the dress stealth-style overnight to make sure she would 'function' the next day. I also remember scouring eBay for the exact same dress in a bigger size when it got to the time she was growing out of it, as life without it seemed so unbearable. Amazingly, I did find one, and that saw us through to her not needing it any more.

Time has flown by in some ways and yet it seems like the longest period of my life in others. When I looked back after getting the diagnosis, I realised that I had spent the first 2 years of her life dealing with unusual behaviour and an older toddler (our other girl) at the same time. It was very tiring.

Things didn't really get easier after the diagnosis as such; in fact as our youngest turned into a toddler herself I experienced some of the most challenging times I've known. I've always been grateful that we did get a diagnosis quickly though; it opened doors to some support for us early on and although there wasn't a huge lot of information to go with it, at least I wasn't left wondering how to explain her behaviour.

Four years on from that diagnosis and we still put an extraordinary amount of effort into every day in order to make all our lives comfortable. As parents we struggled to alter our parenting style from the 'norm' that we had found we could use with our eldest, to a parenting style which goes against every rule in the book. I don't expect everybody to agree with the way we parent our autistic girl, but I'd like to see them live here and try to manage it any other way with a positive outcome (Supernanny? Ha, she's welcome but I don't think she'd last long!). 

We are in the process of trying to get our daughter's diagnosis of Autism Spectrum Disorder added to - that is, with a more detailed 'subcategory' diagnosis of PDA (Pathological Demand Avoidance). 'Why does this matter?' I can hear you ask. To us it matters greatly, as the strategies used to reduce her anxiety and to help her manage the puzzle of daily life are actually quite different to those used for classic autism or Aspergers. I attended the fantastic PDA conference recently and it was so encouraging to be sitting in a room with over 400 people (60 parents, 340+ professional) who were all willing to learn and share understanding about this condition. More specifics on that conference to follow in future posts.

I feel like I could now class myself as a 'Warrior Mum' - a term given to those of us who have to fight every day for our children. Even writing this blog is an act of that; trying to spread awareness and understanding is so key to me. I'm heartened by the number of people I've met who are willing to learn and approach our youngest girl in that different way from the 'norm' - it's not easy, of course I know that, as I live it 24/7, but it is rewarding. I'd never have classed myself as a fighter, but it's been kind of forced upon me....

Blogging wan't something I'd heard of back then, but it has since provided me an amazing amount of love and support, from those both within the SEN community and those who are just caring individuals. Thank you all.

So what is life like now? Unpredictable. That's what I would have to give as a one word answer. We've learnt to expect the unexpected, which I know most parents of any children have to do, but this is on a different scale. I can only say that because I have one of those other 'normal' children, and I can see the difference. I have managed to get back to work - only part time, but it is for a charity that helps other families with children with autism so I'm pleased to be trying to help others. In another of life's weird twists and turns I've also recently been presenting to the local council as part of parent involvement on the new Children and Families Bill, which affects all of us Special Needs Mums greatly. Who'd have thought I'd be hobnobbing and receiving emails from a Government Minister?! That definitely wasn't in my plan.

But who really does get to follow their plan anyway? I may not have known to expect this but for now I can honestly say that we love both our girls with all our hearts and will do whatever we can to help them on their journey through this life, however complicated that may be.

I'm going to leave you with a pic of our youngest as a baby, starting where she meant to go on with not looking at the camera, and an early photo of the two girls together: