|T holding S the month she was born.|
|Pre-diagnosis, in June 2008|
|Post diagnosis, in June 2009|
So Steph's Two Girls was born, over 4 and a half years ago now, and of course there are plenty of posts to show what has been going on in all that time. Suffice to say we've had ups and downs, but on the whole we have been very lucky and found our way through the Special Needs Jungle quite well (see what I did there, Tania?! ;)).
|The girls sitting still together for a change!|
We initially had concerns just about Sasha's speech as it wasn't very clear, and she didn't seem to be developing sentences. It was then that we were referred on to a Paediatrician who gave us a diagnosis fairly quickly. Sasha's speech did develop but can still be a little unclear, especially if she gets upset, and she does sometimes have an unusual turn of phrase. An example of this was her sudden use of the phrase 'Take that, Punk' to an adult friend of ours in a jokey way this weekend - something she picked up from one of the Minecraft YouTubers. Another is when she replied 'oh, you mean snazzy?' when she was told she looked pretty and smart recently.
After much reading and research, we have come to the conclusion that Sasha has a particular sub-type of Autism called Pathological Demand Avoidance (PDA). Asperger's Syndrome and Classic Autism are two other sub-types.
obsessively resisting ordinary demands
appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
excessive mood swings, often switching suddenly
comfortable (sometimes to an extreme extent) in role play and pretending
language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
obsessive behaviour, often focused on people rather than things.
Now though, the serious work has stepped up, and more is expected from life at school. Sasha needs support most of the time, but even with that support available she cannot always be persuaded or motivated to take part. Tests or exams are not ever likely to be achievable under 'standard' circumstances, and we are currently evaluating what type of school or education might suit her best going forward. Sadly we haven't yet found anywhere that can truly meet her needs for secondary level, and so my search needs to continue.
On a personal level, whilst I haven't been able to return to full-time work due to the extra challenges, I have managed to spend a year working in the offices of a great local Autism and ADHD charity. I've moved on from that to help run Early Support training sessions for other parents who have children with disabilities, I sit on the local Parent Carer Steering Board and I work as a rep, attending at council meetings and presentations, telling my story as a parent and trying to influence outcomes for other parents locally. I'm also currently attending Brownies as a helper for Sasha. I hope to be able to spread the news about PDA a little more in the future too - so many families out there just need a little more understanding.
So there is never a dull moment, but I do occasionally reflect back on what a different path in life I have ended up travelling. If you made it to the end of my ramblings, thanks for reading and hope I haven't put you off coming back some other time - it's not all usually this serious, honest! Now I must get off here and stop browsing old photos....
Linking up to the wonderful #PoCoLo