Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.
However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.
The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡
So now we are back in the waiting game… Next week or the one after. Who even knows?!
Nicola reached out to us on our Facebook page to share her story, she is currently organising the first free online pathological demand avoidance summit which will take place between 3rd – 6th July 2020. Pathological demand avoidance (PDA) is part of the autism spectrum and is used to describe those whose main characteristic is to avoid everyday demands and expectations to an extreme extent. It can also be referred to as Extreme Demand Avoidance.
according to NAS (National Autistic Society) the distinctive features of DPA profile include:
resists and avoids the ordinary demands of life
uses social strategies as part of avoidance, for example, distracting, giving excuses
appears sociable, but lacks some understanding
experiences excessive mood swings and impulsivity
appears comfortable in role play and pretence
displays obsessive behaviour that is often focused on other people.
People with this profile can appear excessively controlling and dominating, especially when they feel anxious. However, they can also be confident and engaging when they feel secure and in control. It’s important to acknowledge that these people have a hidden disability.
In Nicola’s words…
I’m sharing this as it would have made a huge difference to us as a family if any of the professionals we were in touch with knew about PDA, it would have made a huge difference to us as a family. I’ve started to see that the more I’m sharing on social media, there’s more people I’ve started to see the more I’m sharing about this on social media there’s more people understanding that their children aren’t naughty just have different needs.
It was a chance conversation with a friend after we had been through the most challenging time yet. During this chat she mentioned three letters to me that I’d never heard before : PDA
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.
A simple description of PDA is: Anxiety need to be in control and avoid other people’s demands, this can be ordinary daily tasks such as getting dressed, eating and going out even to do their favourite activities. They will often go to extreme lengths to avoid the demands For example negotiating,distracting, creating an excuse, or saying something shocking If all this fails then a meltdown.
When my son was younger 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. 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. There are many other examples I could give however I want to keep this short.
As time has gone on and we have an understanding we are able to support and guide him the best we can.
Click the logo to go to the Positive PDA website and find out more, or better yet register for the summit. Educate yourselves about one of the lesser known parts of the spectrum. The summit is entirely free during its duration and has over 16 key-note speakers. I for one have registered and am excited to learn more. Thanks Nicola 😘