We can express what it’s like in the world of being an Autism Mom all day long, especially when we have to take our severely Autistic child away from his comfort zone. It just still seems difficult for others to understand. If my 1998 Autism Mom self had today’s technology to record me sharing my feelings back then, I would have said what the Mom in this video says.
I remember in 1994 volunteering in the Toddler Sunday School doing my one time a month duty. Tyler was two and a half. As the other toddler’s played happily, Tyler stayed in a corner rocking, swinging his arms and at times banging his head in the corner. A fellow volunteer actually said to me is, ” All Tyler needs is some good discipline.” Those words sunk in my brain like acid on my skin. “REALLY?? I parent 3 other children and they are doing great.” But in that setting I wasn’t going to say that and start conflict. I remember wishing I could travel in time and let him see Tyler at age 20 doing the exact same thing at 210 lb 6.3″ tall and show this well-meaning person what we will be facing. It won’t be “FIXED WITH DISCIPLINE.” Then I remember that time I took Tyler to see Barney and Friends live in Gainesville, FL. The other Mom’s were all sitting with their child next to them dressed up so cute and independently sitting in their own seat with the most excited expressions. I was struggling to keep my wriggling, babbling, flapping, and rocking son in his seat wondering why I thought I could do this. Why. The other parents would stare and whisper about us. It’s a feeling I will never forget. It was all new to me back then. I wasn’t used to being stared at. Adjusting to the reactions I experienced would send me to bed early replaying it over and over in my head all night long. I would wake up feeling like I had the flu. That’s what it did to my body.
You know, like she stated so well, this is not said in anger. I’m way past that emotion. I really don’t mind the staring anymore. At this point, I wish they would talk to me about what they see so I can help them understand better about Autism. Most people aren’t comfortable doing that, and I can understand. I just hope people witnessing such chaos would stay their judgement and seek to understand.
When we lived in Woodstock, GA, my husband, Bill began working with a company and met a guy named Jon. He developed a friendship with Jon. Over the following months/years he began to share our secret world experiences with our then 20 year old severely Autistic son. Jon went home and told his wife Jo about Tyler. Jon and Jo invited us to bring Tyler over for dinner. Keep in mind we NEVER CHOOSE to take Tyler into anyone’s home without preparing them for all the things they will see and witness in our secret world with Tyler. They remained steady to their invitation so we let our guards down and went. Tyler immediately spotted their VHS movie collection, which included many of Tyler’s favorite Disney movies. We both jumped over to stop him, given his history of shredding VHS videos (for a future blog post). Jon and Jo comforted us and told us to let him be…it will be OK. Jon let Tyler pick his video and he began to watch. Tyler calmed right down on their couch. They didn’t even care that he wanted to pull the pretty blanket off the back of their cute couch and put his feet up taking the whole couch for himself. It was a blissful moment for me and Bill, two very tired parents who can’t remember the last time we thought it was going to be OK. We enjoyed that evening more than I can say. We felt included and went on to go on outings with them. They even met us at Longhorn Steak House (Tyler called it “Longhorn Skake House”) for his birthday one year and they brought him balloons and a gift. The following October they took us to the pumpkin patch and we had a picnic. Our day was fantastic. Jon and Jo are a perfect example of how friends can be supportive.
When we moved back to Florida, Tyler had aged out of school and was then 23 years old. My brother Steve and ‘Sis-in-law Bebe took me and Tyler out on road trips and had a pool put in for Tyler to enjoy. That’s where Tyler made his famous chalk drawing! See Temporary or Permenant, Behind The Scenes of an Autistic Artist
Steve and Bebe are perfect examples of how family can be supportive.
My heart deeply wishes random people who encounter our children with caregivers in the world would not judge, show them love, kindness, and acceptance. That’s all. And if you get the chance to offer them a hand, please do. You may be blessed. You may have made the day of a Mommy just by your smile. It matters to us… REALLY matters.