Aaaaand it's April 1, 2020.
Here we are, Autism Action month. Will anyone pay attention or care? The window dressing and blue lighting of years past seem quaint. COVID-19 has taken over our day to day life in an extreme way. I've always thought the post below by Cathy Jameson set the right tone for each April, which is why I re-run it from time to time. It last ran in 2017. Image that. Three years have passed by like a flash. My Gianna was still in school, months away from her 21st birthday. Mia was a newcomer to day programming. Bella was a sweet sixteen year old. I was still Kim Stagliano. Our community is hurting badly. And there's no realistic end in sight to this era of self-isolation, no school, limited work, routines built over time and with blood, sweat and tears shattered like fragile glass. Gianna keeps a calendar on our kitchen island. Each day has the name of someone with whom she'll be interacting. These are the people who help fill her day with meaningful moments. She just wrote out the 30 days of April.
MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM
Love to all our readers. Kim
Aaaaaaaaaaaaaaaand it's 2017. "Y'all ready for this?" I want to do a reverse Punxatawny Phil and crawl INTO my den for the month. Kim
Aaaaand it's 2015.
Managing Editor's Note: We ran this post from Cathy Jameson last April - 2013. I wish it were out of date. 366 days later and it still works...
By Cathy Jameson
Let me embrace thee, sour adversity, for wise men say it is the wisest course.
It’s that time of year. We’ve flipped a calendar page to a new month: the month of April. The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode. From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me. While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me.
April used to be my favorite month. It ushers in springtime weather and the awakening of new life. It also happens to be my birthday month. Now, when I think about April and how blue it makes me feel, it’s the worst time of year. Long before the month starts, I’m done with April and the autism ‘awareness’ and ‘celebration’ it brings.
Not only has autism awareness been pushed so much that I’m blue in the face because of it, I recently saw a new campaigns are asking us to embrace it. Embrace autism. Really? I’ll embrace a lot of things, but I will never embrace autism. Before anyone jumps down my back saying I don’t love the person behind the autism label, rest assured I do love that person. I love Ronan to the moon and back (well, farther than that really because many of you know I will do everything I can for him). HE is who I love. HE is my inspiration. HE is the reason I work so hard. But, to ask me to embrace WHAT grips him from the inside out, what limits his abilities and his potential, and what he struggles with almost every minute of every day? Never.
Autism, celebrate it. Autism, advertise it. Autism, wear it. Autism, it’s not so bad. Embrace it.
I don’t think so.
How about we embrace the 1 in 50 (and quickly rising) autism rate? Embrace the need to open more people’s eyes. Why? Because they obviously missed the memo on the autism epidemic and how it happened. Before it hits, let’s embrace what’s coming next. Embrace the fact that young adults on the spectrum will soon be spilling out of their school-age services and into their communities with limited or no supports. Those are cold, hard facts that are worthy of being embraced and what needs to be acted upon now.
To embrace a life-long, debilitating disorder that can hamper growth, delay development and reduce independence is downright wrong. People try to play down Ronan’s diagnosis and the devastation he and so many others suffer. Making light of a grave situation that is affecting him and a generation of children is the opposite of what our society needs to have happen.
When I see whimsical messages and posts about how wonderful autism is, it hurts. It hurts to know that Ronan’s story hasn’t made a difference. It hurts to know that someone took my son’s plight and wants to make a buck off of it. It hurts to realize that Ronan’s struggles aren’t understood, and it’s ridiculous to think that they should be celebrated. How on earth could I ever embrace that?
To the people who are cashing in our kids, shame on you. To the people and the groups I know who are working tirelessly to help reduce our fears, our worries and our struggles so that we can have the positive energy we need to care for our children affected by autism, thank you. Thank you for your dedication and commitment to our families. Your words, your efforts and your actions make a difference.
Today marks the first day of a month that I no longer love. It’s dreadful because it wasn’t too long ago that the month of April gave me great joy. Despite the sadness I feel because of the greed of others, nothing will stop me from showering Ronan with all the love and the respect he so deserves. I embrace him. I embrace the chance to be his Mom. I embrace being able to give him the tools, the time and the hope he needs for the future. Ronan is my life and my joy. No one can take away the awesomeness that he brings to my life. No one.
Cathy Jameson is a Contributing Editor for Age of Autism.