The “month” of Autism. A month just isn’t enough. I write this as a parent of a 19-year-old who lives everyday with Autism, as a mom who is exhausted 7 out of 7 days of the week, and as a voice for him in so many ways.
Two recurring thoughts are taking up a lot of my headspace this month and I am sharing them here. These are my thoughts and in no way meant to ignite upset, rather to share my truth.
When Marky was younger, April felt a bit more fun. It was nice to know so many were going to help us “celebrate” and be a part of our lives to walk, run, raise funds, etc. It brought us together with community and many times during the month, I felt more visible.
Enter May 1. Autism is still in our home. I am still tired and still my voice is needed in so many ways. But, now, the support, recognition and visibility are mostly gone. Back to our reality, the month is over.
I have been thinking a lot about this, especially this year. A month is 30 days, sometimes 31. That is a speck of time in the days of special needs parents. In any day, our to-do list may be 3 pages long (front and back) and we do not get a break. Now during this month, there is an added need on our plate- the silent guilt of feeling like we need to get out there to let everyone know it’s the MONTH of Autism. Many of us get involved in fundraisers, coordinating events and getting out in the community to be heard. But nothing is taken off our plate. It got me thinking about some of the irony in that; many of us end up working harder and doing more, which for me, only leads to more exhaustion.
I believe there is a need for all of that we do, I believe our local organizations need the support and that they offer us great resources. I also believe we must be aware of the energy we are exerting. As parents we tend to overexert ourselves and it is important to think about how that may impact the rest of our day. Dinner still needs to be made, bedtime, meds and the routine will still “be a thing”, and if you are like me, you may ask yourself if you you showered yet this week. A recurring thought I have is to figure out how to implement a program that could have meal chains created, childcare offered, or gift cards for a little TLC handed out to the caregivers. Things that allow a little relief for us while we do all we do.
This year has had a lot of conversation about the color, word and the symbol that is correct to use for those living with autism. For our family, it has been the color blue, the puzzle piece symbol and the word awareness. These are still working for us.
A mom who has a child on the spectrum reached out to me and suggested I use the infinity rainbow and the word acceptance. Although I agree that acceptance is as important, awareness will never be over for us. I think we can use both. I think we all should be able to feel safe using the words and symbols that feel right for us. I think of it as awareness can open a door that will only help to lead to acceptance.
The words and symbols we use can and should be what each individual family feels comfortable with and identifies with. At the end of each day, the conversations are what matter and the visibility matters.
We’ve all heard that expression, “When you meet one person with Autism, you’ve met one person with Autism”. We have such diversity in the diagnosis , we can also have diversity in the way we choose to describe our loved one living with it.
My hope is that we keep talking and keep sharing, with less significance on the words we use.
Here’s to everyday of every month of every year being full of awareness , acceptance, and acknowledgement.