Why Autism Awareness Month Doesn’t Mean Much To Me
Soon April will be here which is awareness month. As of lately, this month doesn’t mean much to me, nor does autism awareness day. When autism becomes your life 24/7 you don’t look at these dates as you would anniversaries, holidays, or a certain time of year. To someone like myself, it is no different than any other day or month.
Instead, I use this day as a time to reflect on where I have been on this journey, where I am at, and the prospects for my two boys, Matthew and Aidan.
Like life itself, when raising a child or in my case children with autism parents and their children go through a variety of phases.
My boys and I have seen it and been through a lot since the start of this journey when they got diagnosed with autism 13 years ago. From the early days of diagnosis to my coming to terms with this new life I found myself in, and amongst other transitions in their life to a few changes in their family dynamic, now here we are awaiting adulthood shortly.
As I had said, autism goes through phases. The three of us had a few challenges and triumphs. If I spent my time just promoting autism awareness, then with all the accomplishments that the three of us have achieved would not be possible unless we put forth action toward that awareness.
In 2011 when Matthew and Aidan were diagnosed with Autism, the rate of diagnosis was 1 in 110 children had autism in the United States. Awareness of the issue was starting to come forward; however, many people back then did not understand Matthew and Aidan’s behaviors.
I was shamed on numerous occasions in public by others who had called me a bad parent, even when I explained to them my children have autism. They felt like I was making an excuse for what they called bad behavior.
Initially, I would confront these people, but after a while, I concluded those people will not understand autism, and they never will. I had to focus my efforts on Matthew and Aidan.
About a year after their diagnoses, I came to terms with it, and life was good; however, reflecting on those days, it felt as if I could have done more when they were younger, yet everything in my little world was going well…at least I thought it was.
By late 2018 their mother and I had separated and were facing divorce. A year later, Matthew and Aidan had changed school districts.
Initially, I wasn’t happy about this, and I was considering moving back to our old home. Aidan had daily meltdowns in school, wanting to go back to his old elementary school, and Matthew had problems adjusting as well. Matthew was engulfed in his world and wasn’t communicating much to anyone.
The boys went through too much between their mother and me getting divorced and switching schools. They needed a break from everything.
Then Covid happened! As strange as it may sound I was happy to see the lockdowns. The boys and I needed a break from everything.
Back during the pandemic, everyone was saying how we were living in the new normal, but I didn’t concern myself with it that much. I had to focus on getting the boys used to our new normal, and so many things were changing over the next 18 months.
First, I was on leave from my employer. I enjoyed the time off from work, but one could say I saw the writing on the wall and knew I was going to have to find a new job.
After numerous delays, my divorce was finally over.
Three months after my divorce, I started a new job.
The boys were in virtual school and eventually would start in-person learning. The school was now becoming a great experience for both of them. They became well-adjusted to their new school and environment.
Near the end of the year, I started dating someone, but sadly, after a couple of months, it wasn’t meant to be.
2021 was a continuation of all the changes that have taken place.
I was going on trips and having fun hanging out with friends. I was even looking to train for a half-marathon. For the first time, I was finally getting somewhat of a break from autism until October of 2021. That’s when everything changed once again.
Due to unavoidable circumstances, I took the boys full-time seven days a week. There would be little to no breaks anymore. My social life was almost nonexistent. The life I had known was gone. I was going to be a full-time single dad of two autistic teenage boys.
At the time, I was wondering how I would pull this off. Fear ran through me as I asked how I would pull this off. How would I balance working full-time, being a full-time dad, and meeting the demands of Matthew and Aidan? Being a single parent is challenging; however, being a single parent of two with special needs is a very unique challenge, and the reality is not one person can do it alone.
Fortunately, my mom had agreed to help me with my two boys, watch them, and be a crucial part of their lives. She sacrificed her retirement, and she wants to help me out with Matthew and Aidan so I can continue working.
The reality is that soon, they will be adults. My mother is getting older, and I wonder how long this will continue. I am searching for solutions but haven’t found the answers yet. There are a lot of unknown things.
When a parent sees their child graduate high school, there is a bit of a standard life outline for the parent that their child will go independently to the world in their way. It will be through college, trade school, or the workforce, but somehow, they will find their way in this world.
With autism, these things, most of the time, do not apply.
In the state of Michigan, there is a life skills program that is a continuation of their education through the local school district until they reach the age of 26, and then it stops.
Unlike kids who go on to college, trade school, and the workforce I will have to find support that will benefit Matthew and Aidan.
Autism doesn’t end at the age of 18; it is lifelong.
It makes me wonder where things will be in ten years from now. Where will I be? Where will Matthew be? Most people generally know where they will be in ten years; however, I do not know. I know my mom will be almost 80 years old at that point. I wouldn’t expect her to help me take care of two autistic adults in their mid to late 20’s. I don’t even expect it now.
Many things are up in the air, as I don’t have any brothers or sisters to help me. It makes me wonder what kind of changes I would have to make in my own life in the next five to ten years.
I take everything year by year and try not to get overwhelmed by the reality of my situation or the future. As with everything, it all happens in phases, and what will occur is unknown.
As Autism Awareness Month approaches, it is nothing more than just another month. It is much more than just blue lights on peoples porches, posting things about autism awareness or someone giving a speech. It is the reality of what parents myself have to go through and those affected by the challenges of a lifelong diagnosis.
It is no longer about awareness, but it is about action. Through action, only then can we make this world a better place for those on the autism spectrum.