The conversation that changed my family’s life
When my son was young getting him to do anything was a struggle. My husband and I were met with constant meltdowns and upsets. Something as simple as dressing him and taking him to nursery on time was impossible.
Everyone told me it was just toddler tantrums and he would soon grow out of it. But he didn’t. In fact, things only got worse.
He became extremely fussy about food. If two different items on his plate touched one another he wouldn’t eat them. He left anything that was the slightest bit burnt and he’d even refuse a chocolate bar if a piece of it was broken.
Other children told me my son was very controlling when they played with him. He was very set in his ways and would only play with certain toys in a regimented way.
On top of all this, he barely slept. Me and my husband were permanently exhausted. We looked like the walking dead.
Aged six, his behaviour still hadn’t changed. We had just moved from London to Wales at the time. My husband had been working away a lot and I had not long given birth to my second child. We assumed the challenges we were facing with him were due to the move, missing his dad and the arrival of his new brother.
But a year later things had only gotten worse. It was even harder to get him to go anywhere or do anything new. He was so anxious all the time. We felt like we were constantly walking on eggshells around him, never knowing when the next explosion would happen.
Desperate for things to improve, we decided to seek professional help.
For almost three years we saw a paediatrician who believed our son was anxious and had different needs to other children, but did not believe he was autistic.
Months later, I had a chance conversation with a friend after I’d been through the most challenging time yet. During this chat she mentioned three letters to me that I’d never heard before – PDA.
I looked it up and took something called the Extreme Demand Avoidance Questionnaire.
As I completed the questionnaire I got goosebumps.
It completely fitted my son.
From there, I read everything I could on PDA. So did my husband. The more we read the more it made sense. It was as if everyone was writing about our son.
During our reading we learned that PDA is not in any diagnostic manual,
Which in turn meant that each previous vivat to the Paediatrician that it wasn’t on their radar.
I have gone on to learn so much about how to support our son and why it’s so vital to look after my emotional well being as parenting a young person is challenging.