I knew the first day of the year was going to be difficult for my son. He woke me in the morning and immediately went to the sofa and lay down quietly but with his legs constantly on the move. He didn’t ask for the tv to be turned on, to do something on his iPad or to have breakfast. For a boy who wants one at least of these and any combination, including them all, every morning, this was not normal behaviour.
The morning continued with a few hiccups along the way. Including a discussion about what I was wearing and what he wanted to take from home to play with while we were there. In the end, we settled on the xylophone as he has been playing it at least 3 to 4 times a day.
We got there and, as the custom generally is in Scotland (and especially with my in-laws) we were going to toast the new year. First of all, there was no drink out for him but one for everyone else and he went to choose a drink. Then Johnathan started to get upset when we asked him to wait to drink, thinking he wasn’t going to be able to. Quite frankly he didn’t want to know or care about the reason why – he wanted to drink it!
From that moment on, I knew it was going to be a long day with his grandparents.
They do try to understand him but there are some things they just don’t get – Sensory Processing Disorder being one of them!
Johnathan started to play the xylophone between coming for cuddles or hitting himself on/off things. Mary (his granny) was worried he would damage his joints but to me, that wasn’t really an issue. Yes, he might hurt himself. But what was so frantic in his body, mind or spirit that was forcing him to be this way? I had no idea!
For the first time ever Johnathan used the bathroom in the house.
However, he did have Daddy and Granny there with him. We were all delighted he had gone somewhere other than home.
Kevin and I recognized he was seeking a variety of sensory experiences and we knew that as it was going to be a hard day we had to make it as easy for him as possible. Lunch was food on a side table. We both were saying that we often let him do this so food will get eaten.
The day limped on by with Johnathan varying between frantic and busy times with different types of sensory experiences to lying down. H would either lie on the bed or cuddling Daddy or myself.
Johnathan is always given his dinner before everyone else there on a low children’s table meant for toddlers. This became a problem because Johnathan wanted to sit on one of our laps when he had finished his dinner but of course, he couldn’t.
When the four of us are there Johnathan cannot sir in the sofa or comfy chairs because there are only 4 seats and eventually Kevin got him onto the bed listening to calming down music but he wanted Mummy and kept popping out to see if I had finished eating.
Mary likes to use this day to take photos of us with Johnathan but he just couldn’t cooperate. He was antsy and literally couldn’t stay still.
When a child is suffering like this, there is no point in trying to get them to change their behaviour because it’s impossible for them.
The torment they are experiencing is crushing out every ability to do other than what the body, mind or spirit is dictating.
The best thing you can do is respond to each need as it emerges. The person enduring this is unable to change their behaviour. They cannot express to you or I the reason why at the time they experiencing these feelings. They are out of control because of the sensory processing disorder.
Johnathan has a wee nap in the car. Then since he was feeling somewhat calmer for his nap, he expressed to us what had actually caused the problem.
This is the reality that many parents go through, day in and day out when their child is on the spectrum.
Poor boy hadn’t felt in control of his body all day and knew it was making him do weird things. But he was unable to change that behaviour.
These are the days when I really feel for him. I know he is seeking a sensory experience to remove the feelings he has but his body cannot work out what to do or resolve the issue.
Anyone on the spectrum can suffer this and live a personal hell with no language to convey the turmoil inside them. We are fortunate that our son is a high functioning autistic child and can talk but even he struggles badly on days like today.
Is it any wonder non- verbal autistic children lash out? Would you be able to control yourself if you had a day like this?
Have you felt the echo yet?