I don’t usually share our most difficult times with Zach.
When you are battling with the authorities for the support needed, all that is focused on are the most negative aspects as that is the only way to get the message across. It doesn’t matter how old Zach is I always feel like a traitor and as though I have betrayed him.
When I was still green I was desperate that people realised Zach’s potential and wanted them to know what he could do, not what he couldn’t. However small the steps forward were I wanted people to know and like any other parent I was proud of him. However I quickly realised that this wasn’t the way to get support.
Zach is having a particularly tricky time at the moment and the most difficult part of it is that we don’t know what is causing it. It must be so frustrating not to be able to express your feelings and not be able to make other people around you understand why you feel anger and upset.
Zach is supported by a fantastic team in Beam ABA Support, they take data during each and every session and analyse the data.
A definition of Applied Behaviour Analysis from Wikipedia:-
ABA is an applied science devoted to developing procedures which will produce observable changes in behavior. It is to be distinguished from the experimental analysis of behavior, which focuses on basic experimental research, but it uses principles developed by such research, in particular operant conditioning, classical conditioning and social learning theory.
ABA uses ABC which is
Antecedent-what happened before the behavior
Behaviour-what is the behaviour
Consequence-what happened as a result of the behaviour
The ABC can show both positive and negative behaviours. Positive behaviours need to be positively reinforced whilst negative behaviours need a different approach which is carefully tailored to the individual.
After almost two weeks of Zach escalating frequently at things which would not normally bother him both John and I are feeling very desperate.
The Beam team are absolutely wonderful and seem able to take it all in their stride, though last night something happened which was a first for us all.
I was going to Laughter Yoga which seems rather ironic now! Zach was going bowling at the local leisure park with two of his support workers. When Zach left home he was happy and bouncy, he loves bowling. I don’t think it is the actual activity he loves but the vibrant environment, but it is certainly near the top of his list for favourite activities.
When they arrived at the leisure park Zach was reluctant to get out of the car and shortly after leaving the car he had a high intensity escalation. It being the school holidays there were lots of people around.
Most of the general public have not ever seen someone with autism having a full on escalation. Naturally they don’t understand what is happening. A crowd grew around them which is the last thing needed, space and a clear safe passage to a place of safety is needed. The place of safety last night had to be the car.
A number of people asked if there was anything they could do to help while others demanded to know what was going on. So while the Beam team were trying to safely get Zach back to the car they were being followed by three men who wanted to stop them to find out what exactly was happening. To remain calm and polite in that situation takes exceptional strength but they managed to.
Zach was still escalated when they reached the car and the group of men who followed them were still there, there was also somebody on a bike following them. The team were feeling uncomfortable about being followed by a group of men and the next thing that happened was a police car came steaming into the car park followed by another three and pulled up next to the car.
The team were questioned by the police about who they were, what they were doing. They had to give my name and number. It became obvious that people had thought that Zach was being abducted.
It was a first for Beam to be questioned by the police and a first for us all the police being called. Obviously we all found it both concerning and upsetting.
When I went to bed I lay thinking about it. I can quite easily see why those who do not have sufficient support do not take the person they care for out into the community. It can be so daunting to receive unwelcome stares and comments when you are struggling to keep a lid on things and everyone safe.
If you have time please read the article this link file: http://medicinetimes.info/2016/05/08/my-son-has-the-kind-of-tas-aout-term-life/ it describes our life pretty well.
I posted the article on facebook and some body commented that not many people have autism this severely, sadly I think the fact is that not many people who have autism so severely are seen out in public.
Every morning I try to have positive thoughts about the day ahead, hoping that Zach will have a good day, two weeks feels like forever when your child is having such a tough time. I am a natural optimist but it can wear very thin at times like this.
It is fair to say the benefits of Laughter Yoga were cancelled out pretty quickly.
Today is another day and Zach went off happy, I have everything crossed that this will be a good day for him and all around him.