Every day is different. Each morning we awaken with great hope for something special. An experience, a chance meeting, a new taste, even simply our plan going ahead as planned.
There are days when we awaken and nothing goes as that anticipation hoped.
When a person has Autism, the slightest thing can trigger either Hyper or Hypo Sensitivity meltdown and to understand what caused it can be that $64,000 question. It may never be just one thing, but a variety of things that cause a nightmare environment to the person with Autism.
Today saw me sat on the stairs with my head buried in my hands, and I’m not too proud to say I had tears in my eyes. Careful to hide this from our son, as he needs to see a strong, cheerful, confident and positive person to whom he can turn to for reassurance no matter what. Our day had been planned and talked about for a week now, Hydrotherapy, Lunch, then return home to play music and if the sun is shining, sit in the garden with a cool juice to drink, and maybe a little cake.
It didn’t work out that way!
On waking, it was clear that his mood had changed from the positive young man who went to bed to one who was now, depressed and anxious. What triggered this, I’m at a loss. It may have been he was too hot, or too cold in bed, the covers may have been too heavy or not heavy enough. He may have heard a noise as my wife and I awoke early and went about getting ready for the day and that noise or sound triggered something. As I bathed and dressed him, I couldn’t shave him as the touch was so irritating for him, when I pulled his shoes out of the cupboard, another meltdown and argument about having to go out – even though it was planned – following a three hour conversation, it came out that he was afraid to go out this morning. Afraid of what I tried to discover, but I still wait some clarity, that may come in the days ahead, it may not, and that is the result of Autism, it seems like forever changing tides, one minute you can be on a high and everything is as it should be, and the next minute you have to support a fearful and angry person who can not explain what or why they feel like they do.
I post this during the Autism awareness week, but frankly, Autism isn’t for a week, it’s day in day out for life for many people and awareness needs to be continual, not just seven days and help and support tangible. I believe we have a long way to go.
Statistics came out in the news this week where life expectancy of those people with Autism can be reduced by an average of ten years. Those with Autism and Learning Disabilities together on average have a reduced life expectancy of ‘thirty’ years. Our son has Autism and Learning Disabilities, as well as uncontrolled Epilepsy which leaves him subject to the added SUDEP (Sudden and Unexplained Death though EPilepsy)
This is why, every day, no mater which way the tide is turning, that day is a gift for us as parents, and our son and no matter what, we will aim to give him the experiences of life that he is able to, no matter what.