Tide of Change

Tide of Change

Some days are better than others
Some days are better than others

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.

10 thoughts on “Tide of Change

  1. I genuinely feel for all of you. I really don’t know what else to say, other than how sorry I am that it’s so very difficult for all of you.


  2. Since March 2016 I’m working on the weekends as a night watch in a home for mentally handicapped people. It’s true, their mood can change very fast. Last night I had the night watch, it was an exception, I was working in a dialysis clinic yesterday morning. So last evening I wanted to losen the knot in the shoelaces of one of the inhabitants. I sat down on a stool. At least I think it was a stoll. It stood in front of an armchair as if one should place the legs on it. I probably was too heavy, or the thing was already weak. It crashed under me and I was sitting in the parts of it. I was laughing. The inhabitant had to laugh a bit too. I always talk with them, as if they were normal – maybe we’re all a bit like them, just not as much – I don’t know. I forgot to tell them about my stool experience, only thought about it this evening – too late. And later yesterday evening I found a middle sized pale spider in my hair in the front. I got arachnophobia. Tried to shake the spider out, finally had to brush it out. Wondered if I got it during my fight with the stool. On a more serious note, I had a first aid training in the dialysis clinic last Friday. When I told the nurse in the home for mentally handicapped on the weekend, she told me not to try to save the life of one of the inhabitants, who has epilepsy and whatnot. “Because it would be better for him to die.” He’s not young, but still – I found this kind of bitter and I rather not have to make a choice like that.

      1. The patient who has epilepsy and whatnot is much better by now. He’s running like the wind, with his urine bag in one hand. He doesn’t need the rollator anymore and has had no further seizures. He’s really not THAT sick. Last Sunday I heard him discuss with the other inhabitants about children. He was very interested in their views of the world. No idea why that colleague of mine thought dying would be better for this patient.

        1. This is such a heartening update Stanze, and I thank you for sharing it. Good luck to him and I Hope he continues on this path.

  3. Beautifully written Paul and so informative and inspirational. It’s obvious why Marc was born to you – absolutely no one else could have been entrusted with the care, understanding and love given to him by his family. Hang tight. Alicia

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