Jay has always struggled with daily transitions as well as more major ones. This is why we have a personal daily planner, and faithfully use it each day.
But what happens when despite doing all the right things and having all the right resources in place, your child still cannot cope with any demand or transition in their daily life? Well, firstly you panic a little, and think how in the world you are going to put this right for the child. Then, as is what happened to me lately, I searched my old blogs to find what I used to do to support Jay through issues with transition and demand. We know that within the Autism Spectrum there is something named PDA. Pathological Demand Avoidance. Jay does not have this listed in his many conditions, however after the last few months, I am seriously thinking he may have this element within his low functioning Autism. This is because Jay began to react to each and every demand or transition made throughout his day. At first it was subtle then it became absolutely devestating. To see Jay go to pieces when asked to clean his teeth, or take a shower, or drink his juice or even use the toliet, was so distressing. It made our days long and difficult and it was obvious that it was way worse for poor Jay. I am sharing this because it is a part of Autism which is truly scary. It’s not easy to see a young child through it. But we do it. Of course we do because we love him! You see, to Jay, these easy everyday tasks were for some reason becoming so difficult and scary, that he would shutdown and meltdown rather than aquiese to what was required of him. This meltdown consisted of screams. Out of control screams, full of fear and indeed Jay did express fear in words, telling us he was scared of juice, or tea or teeth cleaning. These were things he is used to doing, so I knew something was really off and very wrong! I was aware of PDA as I had covered it in my Parent training course way back when Jay was 5. I never saw signs of it in Jay until he turned 6. It showed again at 7 when a transition to Special School brought a similar situation. This was due to Jay reacting to a massive change, a new school and new people. So, thinking back to then, I tried to find a reason when this started again two months ago. But I couldn’t. Try as I might I could not link this new behaviour to any event. Last year after really distressing weeks in the summer with gasworks outside our home, digging holes in our garden and constant loud noise, caused a massive reaction in Jay which lasted months. I was speaking to Jay’s, specialist nurse this, week about it and she said maybe the reason I could not find a trigger this time, may mean a delay in Jay’s ability to process events might mean that the trigger was months ago. This was wise, because it had not occurred to me that the trigger may have already happened weeks or even months ago. This is where we must look at delayed processing and truly understand it. A trigger which may be an event or a situation of high stress and demand, can sometimes not be truly processed by the child until much later on. I’ve seen this many times in Jay’s life. I knew that Jay’s nurse was possibly right. What had happened in the last 6 months which may have triggered this extreme PDA linked reaction, resulting in Jay crying hysterically and screaming at everything we asked him to do? Then the answer came to me suddenly. Change had happened. The current situation had happened. Massive change in that for 6 weeks he was home schooled. Then to return to school with only 30percent of pupils there and weird set ups to his school environment designed to minimise contact. Then the summer holidays came, and even though Jay had his usual Respite carers they cared for him at home, no trips and no therapy. There was another trigger. No therapy. Only people who understand how we live with Autism, know how important therapy is. Jay usually has access to Hydrotherapy, sensory rooms and music therapy and every single part of therapy had been shut down. I’d got there at last. I’d found the triggers. For an Autistic child like Jay, all these differences and changes to his life, were all affecting him yet they had not affected him at the time. I told all his people how unbelievably well he was doing during this time, but the whole time Jay’s brain was desperately trying to process it all and finally by September his brain had caught up and he was processing events from back in March onwards! This is important when attempting to discover a trigger for a particular type of behaviour or reaction in a child with Autism. There are many problems as the child will most likely have delayed processing as part of their Autism, and here we saw PDA come out in Jay. No matter how we delivered the task he reacted in the same way. I used viable aids to help him, he still reacted the same. All my usual ways were failing! What could I do? What was left to try? Well, the solution presented itself in an unexpected way, from an unexpected source, as these things often do. One of my care workers was with me one Saturday supporting Jay, and I happened to mention the development of PDA in Jay, and my respite Carer made a suggestion. She said that during her experience with PDA, it had taken her 3 years to work out that if you simply mention the demand or task the child needs to do or go to, in advance in a simply put way, speaking in an eluf chilled way, and not directly , then by the time the task is here, it will have processed in their brain and will not be as scary or too demanding to do! I took that in, and thought it through, then applied it that very night. One of the things Jay was struggling with was getting on to his school bus. Going from our house, to the path and getting on the bus with his passenger assistant. It had nothing to do with his assistant whom he really loves, or his friends waiting on the bus. It was the transition itself that he couldn’t cope with. He wished to avoid the demand, hence pathological demand avoidance. so, on that Sunday, I chatted to Jay whilst he settled in bed that night, and I casually mentioned that the next day his passenger assistant would hold his hand and take him down the path to see his friends on the bus. It was non direct. It was casual and non scary because it wasn’t a direct demand. The next day I mentioned again at 730 that soon Sue would arrive and he would see his friend B on the bus and again he didn’t react at all. When the bus arrived I was amazed to see Jay walk freely to Sue and take her hand and go to the bus. This, after more than one time of resisting physically and strongly down the path and believe me Jay is tall and strong for 10 so that was no mean feat. I shut the door that day and reflected over a morning coffee, could it be this simple? Surely not? But you know what? It was! I began to use my carers concept in all tasks and demands and transitions in Jay’s day and it worked. Yes we had the bad days still but in general, as long as I casually dropped the hint to him before something was to happen, Jay accepted it . Sometimes people make such a difference to your lufe and Jay’s carer who I count as our friend, by giving one simple piece of advice, changed our and Jay’s life for the better! Things have settled this last week. Jay, I believe has finally processed this last year and even though he still doesn’t understand a thing about why this happened, he did notice the changes made in response to it. So, we carry on using simple but effective ways to support Jay and to continue to show understanding and acceptance of all his ways issues and fears. No matter what Jay does to react to the world, scary or good, he has us, his family to support him, love him and fully accept every single side of his amazing personality and his Autism, delays and learning difficulties. We always will!