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Saturday, 14 January 2017

Seven years older and a tiny bit wiser...

Seven years ago today I wrote my first ever blog post. Today is my Blogiversary!

It's only thanks to Facebook memories that I remember the actual date the word autism first entered our lives. Since having children I seem to have developed a sieve-like brain, and dates are not something that stick with me.
Steph's Two Girls Sasha in snow
Sasha in January 2010, around the time of her diagnosis
Some events though, stay in my mind as clear as if they happened yesterday. I remember vividly that first meeting with a paediatrician; I can picture Sasha entering the room, her wanting to climb up on the bed in there, the toy box the paediatrician tried to get her interested in, and the way Sasha thrust her coat into my arms and tried to lead me out once she had had enough (about 10 minutes after we went in).

I also remember that the word 'autism' came from my lips first, but that I had no idea why or how I even knew about it. It was the other related words which the paediatrician was using to describe Sasha and her actions which kind of swirled around my mind and made me jump to that conclusion. 

I'd done no reading or watching (or writing!) about autism before that day; it hadn't entered my mind that it was a possibility. The previous year in summer, before she turned two, I'd started to notice Sasha was making plenty of sounds but her speech wasn't coming out clearly. Tamsin had spoken clear words fairly early on, so we did what most parents do, and compared our youngest to her older sister. 
Steph's Two Girls whole family on blue train
Another photo from that time; February 2010. It was quite unusual to get both girls in the same photo back then but we had them trapped here. Who am I kidding, it's still tricky to get them both together and smiling...!
I mentioned it to the Health visitor at the 2 year check up, and she said 'not to worry, all children develop at different rates'. This is of course true, but a couple of months later when we were no further on I decided to research a bit more and discovered that you could refer directly to the speech department if you had any concerns. 

So that's where our 'journey' really began, I guess - we saw a speech therapist that autumn. I also remember vividly the meeting with that lady - I sat in a chair by her desk, Sasha sat at a small table by the door with typical toddler toys on it. I answered all the usual questions about what sort of birth she'd had, what games we played at home, how was I encouraging her speech etc. The therapist wrapped up our session with a direct question to me - 'have you noticed that she hasn't made a sound since we've been in this room?' 

I remember feeling slightly affronted, thinking 'of course she hasn't said anything, you've just given her plenty of toys to play with in a nice quiet room so she doesn't need anything else'. The speech therapist informed me she was going to refer Sasha on to a paediatrician in the same centre - 'it's just routine, nothing to worry about'.

Christmas was fast approaching so I put the next appointment to the back of my mind and got on with the important job of providing wrapped gifts. Once Christmas was over and the New Year dawned, there was back to school for the eldest and so I still didn't have time to dwell on it.

Ten minutes in to that first appointment with the paediatrician though, my mind focused pretty quickly. I watched as Sasha refused to do the basic tests which the paediatrician wanted her to - simple things like pointing out the big yellow circle, or stacking bricks in height order. I knew they were tests which she was capable of doing, she just didn't want to play ball. It was 9.30 in the morning and I realised that I could no longer use the excuse that she was a bit tired. All the previous occasions of refusal flashed before my eyes and suddenly became linked up.

Honestly? It was like a weight was lifted from my shoulders. Sasha was like a typical toddler in many ways; she was generally happy and it seemed she was easily pleased... until I wanted to go out and about to a certain time schedule. The autism suggestion made sense and it was a huge relief to realise that it wasn't just me struggling with the terrible twos and the terrible fours at the same time and making a right hash of it.

Steph's Two Girls in a box
Adding this because it makes me smile as I remember how much they loved playing together in that box...
So we stayed in quite a lot, and became a bit isolated, but I gradually learned how to figure out what made Sasha tick. Actually I take that back; I began to learn, and I'm still learning today. Of course every stage of her life brings new challenges and so the learning will never stop; true for our eldest too of course but with her it's a much easier ball game where we generally get to call the shots. Not so for Sasha.

Pathological Demand Avoidance was the missing puzzle piece; an answer I found online, probably by searching along the lines of 'why won't my daughter wear socks at all, even when it's snowing outside?'. I had my lightbulb moment; we went back to the paediatrician armed with examples of behaviour and she agreed with us. So PDA appears as a second line on Sasha's diagnosis letter - PDA is a type of Autism Spectrum Disorder, so ASD (or ASC - Condition rather than Disorder) is the overriding diagnosis.

I feel extremely lucky to be in the position we are in; we've been supported amazingly by those around us and we've worked with everyone on what's best for Sasha. We don't have all the answers yet, and this year ahead is set to be a challenging one as we figure out schooling and testing and looking ahead to the next secondary school step. 

Blogging our 'journey' (replace with 'story' if you're not a fan of that word) has helped me so much and seven years on, some of the highlights it has brought are the emails from other parents who thank me for helping to make them feel less alone.

One mum recently wrote:

 'I’ve just done some google searching after listening to a radio 4 programme this evening that talked about PDA. I now have tears streaming down my cheeks as I write. For years I’ve struggled with so many things about my daughter who is now 7 and a half. So many of the key characteristics ring true when I thought my daughter was just being difficult, I see her in a new light. It’s given me the motivation and encouragement to seek help and to find out what the professionals think. I just want to know how I can be a better parent to her and how I can help with her education. It’s been a year of struggles with her at school and with no real improvement I really don’t want to be here again in another year’s time.

I’m sure you must get a lot of these emails but I wanted to thank you for blogging about your situation. It is massively reassuring that it’s not me or my parenting style and it has helped me to see the underlying anxiety that I battle with every day.'

Honestly, this is a large part of why I carry on writing, even though I never had any dreams of being a writer. Support from others online here, and on Facebook and Twitter, has kept me keeping on. It's not always easy, finding the time, or the right words, but it is satisfying to press 'publish' and know that some of this information is spreading out, and that it might help people - including my girls.

Steph's Two Girls Dec 16
Christmas frolics seven years on  :)

Apologies for the very long post, but I think after seven years I've earned the right to waffle a bit....


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