When I started writing these articles, I intended to write one article every month to help people with and without Autism understand what goes on in my mind. By exposing how my Autism affects me, my hope is that each reader will be able to apply some small portion of what they read in these articles. Every person with Autism manifests their Autism differently from everyone else. As such, having a goal of helping everyone with any connection to Autism would be a tough goal to achieve. My more modest goal is that each article will have some impact on at least one person’s life. Maybe it helps someone to understand a loved one, it encourages someone to be a little kinder to someone with Autism in their life, or it causes someone to take a minute to read the article and then think about it. That is why I write these articles, to ignite that spark in my readers.
You see, that is how I was raised. I have a great mother who raised three children on her own starting in the late 1970s - a time where a decision like that was not very popular. Over the years, we have talked about the reasons why she did that, and her response always remained the same: “I love you kids, and I knew it would be hard, but I also knew that I could do it. So, I did it.” From there, it was always a solid talk about how her faith in God, as a Roman Catholic, helped her in the tough times. There is always a mention of how we often threw roadblocks in her way, which all three of us blush or laugh at when they are now mentioned. Outshining all of that, was the firm statement from my mother that, through it all, her love for us never faltered. And in return, all us kids had one extra best friend in our lives.
We were not the only ones that she affected. By continuing to be involved in her church, she was fortunate enough to meet, fall in love with, and marry her second husband, Gerry. She loved Gerry’s kids as her own, often speaking of his kids and his grandkids with the same love that she has for her own grandkids.
Giving back was so wired into her system, that she found a job working with the Red Cross to provide aide to the elderly, by helping them with everyday things that they could no longer do. When we heard stories of the people she helped, it would be easy to believe that those people were related to our family by the way my mother talked about them. Not one to be idle, in her off hours it was rare that she was not sitting in her favorite chair sewing or knitting. She used those skills to make doll clothes for children in need, and baby blankets for newborns at the local hospital. Once again, when I asked, she would say that it kept her busy and that she was giving back to a community that had helped her when she needed it. So, she did it.
It is because of this, that I have started writing these articles and writing in general. As someone with Autism, I cannot help everyone out there, but perhaps I can help get some manner of message to some of the people that need it and do my bit to help. Write the next great science fiction novel? Tried that and failed miserably. Invent some new software that will revolutionize the way we do something? Tried that and did decently okay back in the 1990s. Write from my heart about how my Autism affects me? To echo what my mother said with my own spin: “It isn’t going to be easy, and I know being vulnerable is hard, but I know I can do it. So, I did it.”.
But that bedrock of my life, my mother, is now faltering. After 75+ years of her life, my mother is being attacked by the disease known as dementia. Its effects are brutal. There was a time when I could pick up the phone and have a good 30-minute conversation with one of my best friends, now we struggle to have a 30 second conversation that is coherent. In the past, we used to laugh at all the stupid things I did as a kid, now, I try to hold back the tears as I tell my brother and sister about the calls I have had with my mom. Instead of talking about our next family gathering with Mom and all three sibilings, we end up talking about funeral plans and how we know she is in pain while she is losing her mind.
The last decent conversation I remember having with my mother is in August, right after my son’s birthday. It was a bit sketchy in places, and it was obvious that some of her long-term memory was going, but it was a good conversation. Every two or three weeks after that, some element of the conversation dropped away. It was as if someone was taking the color out of my mother’s life bit-by-bit, and the struggle in her voice to form sentences was obvious. After that, it was harder to call her. I knew that when I called, it would hang over me like a dark cloud for the next couple of days. I started making excuses as to why I could not call her, convincing myself it was for the better. I was just scared. I was losing my best friend.
This really hit home just after New Year’s Day when I called her to wish her a happy new year. I wish I could relate to you what that conversation was about, but I honestly do not have a clue about it myself. I asked her how she was doing, and she said she was sad. And then she mentioned something about children and red and a couple of other things I could not understand. Talking with my sister later, she mentioned that she must be having a good day that I was able to get 1 or 2 coherent minutes out of her. Most days, my sister was struggling with her to even get that.
That really threw me. I tried writing an article about Autism after that call, but nothing came out. Every time I started to write, I wrote one sentence and stared at the screen for 15 minutes before giving up. In each case, I always went back to thinking about Mom and her dementia. After a good solid six weeks of repeating that process and getting nowhere, I had a “lightbulb” moment. It was then, that I realized that this was also affecting me on another level, a more personal level. I was afraid for me.
Autism by itself is no walk in the park. Sure, I have learned to mitigate a lot of it, but it still a lot of work. I was lucky to find a second wife later in life, who takes the time to understand me. In return, she reasonably asks me to understand her quirks and accept her for who she is. Our conversations often reminds me of my conversations with my mother as I was growing up, trying to figure things out. Now, instead of being able to share my happiness with my mother, I see how quickly my mother’s dementia is removing most of the woman that I knew, admired, and loved. That’s chilling.
You see, as someone with Autism, I have spent my life working on my communication skills and overcoming a lack of social skills by using the positive aspects of my Autism to compensate. Back in August, when my mother’s dementia was getting worse, I looked up the definition of dementia on the Mayo Clinic’s website, and it looked like it was tailor made as a nasty list for people with Autism. In the Cognitive part of the list, it talks about “difficulty” items. Most people with Autism struggle with all/some of these “difficulty” items and, if they are lucky, can find ways to compensate for all/some of those items. The thought of losing some of my ability to mitigate my Autism sucks. The Psychological Changes part of the list is not much better. To be truthful, I know that my Autism has caused me to experience at least 4 out of the 7 things on that list in some form. It is only by working hard and trusting in my doctor, my psychologist, and my friends that I now keep their influence down to a bare minimum. But if they get worse?
For me, part of having Autism is being hyper-aware of things around me. It is hard to miss things when you brain is busy analyzing things for most of your life. At 52 years of age, I am noticing that I am forgetting some little things here and there, mostly short-term stuff. There are times where I have difficulty in finding the right words to communicate something, only for the word that I am looking for to be something simple. And as funny as it sounds, I am forgetting where I placed my keys more often these days, something that almost never happened in the past. And with what my mother is going through, I sometimes wonder if I am getting some early tinges of dementia, or if this is just normal… or at least as normal as a person with Autism can get.
But I am not one to wallow, I am one to get out there and do stuff. I know I get knocked down from time to time, but I also know that I am not alone. My family, in their own unique ways, helps to give me the courage to dust myself off and stand up again.
Am I worried about my mother? Yes. But the only thing I can do there is to try and call her to let her know I am here, and to send peaceful thoughts her way.
Am I still worried that the same thing that is afflicting my mother will one day afflict me? Yes. But I hopefully have some time before that happens, I can look for positive actions that I can do to help me combat this disease.
Does my writing help me as much as it helps others? Yes. For me, I think that my writing helps me as much as others by acting like my own rubber duck. It hurts to talk about things sometimes, but if I can help one person in some way, it is good enough for me.
So, I did it.
So what do you think? Did I miss something? Is any part unclear? Leave your comments below.