Blog#19: Dear families and friends

Dear families and friends of parents with PDAers, Firstly, let me just tell you this. From the bottom of my heart. We GET it. It’s really hard to understand our lives. We see the disbelief in your eyes, the way you wince when you witness situations that seem entirely out of our parental control. YouContinue reading “Blog#19: Dear families and friends”

Blog#18: Meltdowns – two sides to every story

I’ve been mulling this one over for quite some time. Meltdowns, and everything that comes with them, are a highly emotive subject for families with PDAers. Often on online forums, parents post about how they are at their wits end with immensely challenging behaviours, and are sometimes called out on their feelings by neurodivergent individualsContinue reading “Blog#18: Meltdowns – two sides to every story”

Blog#17: The elephant in the room

This year, I’ve been struggling with my own ‘elephant in the room’. My elephant is that we have no official PDA diagnosis for JJ. Ever since our PDA lightbulb moment in the spring of 2019, I’ve devoted a huge part of my life to discovering everything I can about this little-known profile of the autismContinue reading “Blog#17: The elephant in the room”

Blog#16: My PDA son, my friend

Have you ever heard people say: ‘Kids need parents to be parents, not friends!’? I definitely have. I know the thinking behind this…that somehow, treating our children in the same way as we treat our friends will be detrimental to their upbringing and that our children will miss out in some way. In this context,Continue reading “Blog#16: My PDA son, my friend”

Blog#15: He doesn’t act like that when you’re not around!

When I first started reading about masking, I assumed it was just something autistic children did when they were school. I saw it in very simplistic terms. Holding all their feelings in: the confusion, the sensory overwhelm, the desire to be the same – until they came home and the mask dropped. It all comesContinue reading “Blog#15: He doesn’t act like that when you’re not around!”

Blog#13: The tough meds issue

I recently needed JJ to take a tablet, just a one-off, but this instantly caused a problem. A powerful combination of demand avoidance and sensory issues means that any sort of medication has historically been almost impossible. When he was very little and needed paracetamol, we had to resort to pessaries. Not pleasant for him,Continue reading “Blog#13: The tough meds issue”

Blog#12: Transitions

PDAers may find transitions really challenging for may reasons: hyper-focus, sensory challenges, autistic inertia, and of course – demand avoidance… Throughout the day as a NT person, I take for granted my ability to manage a multitude of micro-transitions which I usually have no issue with. Being able to support our neurodivergent kids with everydayContinue reading “Blog#12: Transitions”

Blog #11: Camping at Parkdean resort, Sandford.

Yesterday we returned from a very short camping trip to a Parkdean holiday park close to where we live. We have visited once before so JJ was happy to go and knew what to expect. He was so excited to be able to take Peanut, and he loves being in a tent. The only thingContinue reading “Blog #11: Camping at Parkdean resort, Sandford.”