I was in the kitchen one afternoon searching through my emails when my oldest daughter walked in. She had just been outside on a gloriously sunny day with instructions to play until I come and get you. ‘Get back out there,’ I said while keeping my eyes locked on the internet. I needed the outside playtime to last hoping it would buy me some time to veg out, get some computer “work” done and to have a moment of silence from our constantly-busy schedule. ‘I have to use the bathroom,’ Fiona said while hurrying away.
Shaking my head at myself and the ever-growing list of things I needed to get done, I craned my neck and went back to searching for whatever it was I was looking for. I wanted to reply to an email before I was pulled in another direction. It’s nearly impossible for me to complete a full task in one sitting but I was determined to get this one done. Scratch that chance.
Fiona walked back by the kitchen as I had my hands hovering ready to type. “Mom,” she started. Ugh. Can’t I have any peace and quiet around here?! “Yes,” I answered as sweetly as I could. “Mom, when are you going to be done with all this autism stuff?”
Stabbed. Stabbed with guilt. My heart broken and my head hanging even lower, I raised it to look Fiona square in the eye and asked, “Why?” Fiona had her hand on the doorknob already and was about to jet back into the backyard. I didn’t want to be gruff or give her a long-winded, over her head answer so I asked her a question back. “Do you want me to stop reading about it?” Fiona looked at me with wide eyes, “NO!” she said emphatically. I went on, “Do you want me to stop writing about it?” “No, Mom. I just wanted to know when it’s going to be all done.” Fiona is eight. She’s only known her brother Ronan to be who he is with all his behaviors. She lives through the hours of therapy, the miles of driving, the pages of books, magazine and websites I read. She is very aware of the many things we do to make Ronan’s life easier so all of our lives are manageable. Fiona needed a quick, pat you on the back answer that promised only good things.
I took a breath and replied, “Oh, I guess I’ll be done when things get better for us, for Ronan and for other kids like him. It stinks that I have to do all this and I’m sorry it takes so much time. “Okay,” Fiona said. “Can you come outside? You said you would.” More stabbing pain in my heart. “I’ll be right there.”
This month is autism awareness month. I haven’t looked it up yet but I wonder who came up with a whole month to celebrate being aware of autism. Why are we celebrating being aware? Why can’t the whole month be dedicated to promoting the therapies that provide scientifically proven strategies to help those on the spectrum? Why can’t at least one day be dedicated to offering free or reduced rates for therapy trials? Why can’t one week be set aside for politicians who voted against insurance coverage for effective but unbelievably expensive therapies that work but are so financially out of reach to come live with a family with multiple children on the spectrum? Their vote could save a child, their lifetime, their parents’ marriage.
Wait! Even better…what if for one full week we had a program that would help the world understand how aware some of us already are? What if we opened our homes to a complete stranger, better yet, the politician who had the chance to open more doors for families but didn’t, or a lobbyist who stuffed big pharma into the pockets of said politicians, or a clueless celebrity who fronts for a group that promotes harmful-to-kids science, or a high-power news commentator who contemptuously condemns us parents? Let’s throw in that pesky neighbor too who thinks the only cure for our child is better discipline. That person would be morphed into a child or young adult on the spectrum for a week. Each morphed person would exemplify one of the negative associations of autism, the ones that are all but forgotten on the awareness campaign. The morphed person would experience a 24-hour glimpse of the 365-day “awareness” we already live.
Here’s a line up of what they might expect:
Monday is Poop Smearing Day. Everyone don your rubber gloves, your surgical jumpsuits and your clothes pins to hold your nose! Come to the toxic dump that is the child’s bedroom and witness the rainbow of stench that can be pooped out of a seven-year olds’ bum. Seven is way too old to be in diapers but add sensory issues, medical maladies and lack of awareness when a stinky poo comes out and you’ve got the makings of a Crapisode. Don’t forget to air out the place when you leave for the day.
Tuesday is Non-Verbal Try to Communicate Day. You have a voice but only vowel sounds are emitted. The person you are talking to can hear you but has no clue what you are saying since you sound like Charlie Brown’s teacher. See if you can order a hamburger and a shake. You will surely get the deer in the headlights look all day long. Your behaviors, negative ones, will increase as the day goes which will add to your frustration and your caretakers’ stress level. Good luck with making friends.
Wednesday is Over-Stimulation Day. Mom’s got to get some shopping done. Problem is, she can’t find someone to watch you. Your issues are too intense for the neighborhood teenage babysitter and the government agency that used to help has no more money to offer respite. You get to tagalong to the local vision-exploding, ear-piercing, can’t breathe without gasping for air sensory overload experience. Mom settles for more catalog shopping while hoisting you over her shoulder and scurrying out of the mall before she’s asked to leave because you freaked out in the tiny changing room with the flickering fluorescent lights. Mom looks like a dumpy dump in her too-large catalog shirts that she can barely afford but at least you’re safe at home with her from now on.
Thursday is Total Tantrum Day. You want to watch ‘Elmo’s World’ again but the DVD is scratched and your movie is worthless. You might as well use it as a coaster. Dad can’t find a replacement movie so you’re left to deal with the disappointment. The only way you know how to deal is to throw a tantrum. Mom is crying in the corner while Dad looks on eBay for the special edition DVD. It’s going to cost just as much as one speech therapy session since it’s the only one left on the planet and it’s a boxed edition signed by every character on Sesame Street. Dad enters his credit card number hoping he gets a raise at the end of the year to pay off the debt. You still tantrum even though the movie is purchased. It won’t be delivered until next week. Mom quietly puts her ear plugs in and wipes a constant flow of tears from her eyes.
Friday is Find Me Day. You ran out of the house when no one was looking. Mom was in the shower when you slipped away. The house was too quiet as she got her robe on—she knew you were gone and ran out of the house with the cell phone, 9-1-1 already dialed. Thankfully you were only 2 streets away in your own neighborhood. A retired man who was walking his dog spotted you in your dirty diaper and waited with you until the police arrived. Mom grabs you in a full hug and can’t speak. She sobs heavily while you try to push her away. It’s too hot for you to be hugged, that’s why you were only wearing your diaper when you left.
Saturday is So You Think You Can Swim Day. I won’t even go into details about the events of that day since it sends shivers across the autism community parents to think about the ‘what ifs’ when there is a body of water near their child. Half-emerged, fully clothed bodies are not a pretty picture.
Sunday is Sit and Wiggle Day. You thought it was a day of rest but your family once again attempts to make it to Sunday services. Dad manhandles you to sit still while kids a few pews back stare at you wondering what the heck is wrong with you. Mom keeps her eyes on the altar wishing you could just for once, sit at church without causing a scene. The pastor keeps preaching but can’t help but stare at you every few outbursts. He silently prays for you and your dedicated parents.
I would imagine more “awareness” would help those perfect strangers if they could live for just a few moments in our children’s world. It may actually convince them to do something. These people need to learn how and where the autism community lives so they can offer real help that works. We’re not asking for everything to be perfect. We’re not asking for our children to be the center of their attention, their only priority. We’re asking for action. We’re asking for help. We’re asking for hope. We’re asking for it now.
Back in my own house, Fiona ran to the swing set to play. I had a brief moment of letting everything go. I almost quit advocating. I almost retired my keyboard from all the writing I do. I almost took off my ‘Special Needs Mom’ hat to put on a ‘Just a Mommy’ hat. In the blink of an eye I could have ended a calling in this community. Fiona only wanted an answer and happily, was satisfied with the one I offered. She said I should keep writing because she loves to hear that my stories are being read by other people.
That afternoon, I closed the laptop. I went outside to enjoy my children, watching them crawl all over the playground my husband built. It has slides, swings, monkey bars. It has the potential for a whole lot of fun. I shouldn’t just peek out the window at my children while they play but most days I do. I stay too long on the computer or call other warrior parents. I’m afraid of where my son’s future may be if I don’t do something now which means a lot of networking and asking questions. If I don’t learn now how to navigate an antiquated system not ready to handle the large population of children like Ronan, how will he survive as an adult?
But, before I let my own four walls cave in, I have to also remember that I have typical children that need their fun-loving, still-swinging, barely-fitting down the slide while galloping over to the trampoline to jump till my thighs burn Mommy.
I got out that day to be with my children. There’s enough autism action going on over here in my home. Can you do the same for someone in your community? Do you have time to advocate or volunteer with a local group that supports families in need? Do you have a chance to donate services or assistance to make a child more successful now? If you can imagine that cleaning up poop parties are bad when made by a seven-year old, add ten years to that with an almost-grown man and his poop. Get out and adopt a family that you can help now. Autism awareness is so old hat. Look around your community and learn what local families need. You will not be disappointed in how far your acts of kindness and commitment will go.
Cathy Jameson is a Contributing Editor to Age of Autism. She also runs the AoA FaceBook fanpage.