What Does Autism Awareness Even Mean?
April is Autism Awareness Month.
I’m not sure when this tradition started. Does anyone out there know? I would research it but I’m in the middle of eating a huge, yummy cinnamon roll from Cinnabon and I don’t feel like multi-tasking.
But it’s a curious thing, this awareness.
When my sister and I were kids, we would play a game where we’d say a word over and over again until it lost all of its meaning.
aware aware aware aware aware
Then we’d try to think of as many rhymes as we could.
Aware, despair, somewhere. To stare.
But what does autism awareness really even mean?
I know, it a chance to celebrate unusual, to rejoice in ideas like inclusion and integration and bright, colorful days. It’s an opportunity to educate the public about why our kiddos may throw huge tantrums in Costco or jump up and down in the aisle at the movies. It’s good stuff, this awareness.
When Jack was about nine, he would lock himself in the bathroom at 4:00 every single afternoon and have the most horrific bowel movements I’ve ever seen. He would take all of his clothes off and moan and wail. Then he would run all over the house and make poop-footprints on the floor and splotchy handprints on the walls.
For the entire year, every afternoon at about 3:58, I pictured myself opening our front door, walking outside, and never coming back.
Does this story make you more aware of autism?
Aware, beware, nightmare.
If I tell you how sick of the whole cake thing I am, will you understand autism any better?
Because I am sick of it. I am sick of the ceaseless talk about cake and making of the cake and washing of the pans. Never in my wildest dreams did I ever think I’d say this, but I am sick of cake.
Ever since he announced he wanted to be a baker about six months ago, Jack has full-on perseverated about this topic. I picture his brain like Candyland, only instead of fun candy and characters, there are long, crisscrossing tracks of cupcake tins and tubs of frosting and sprinkles.
But here’s the thing. He’s not getting any better at it. He’s not exactly mastering the art of baking, or even staying with the project long enough for the pans to go into the oven. Basically, he wants to crack the eggs in the beginning and frost the cake at the end.
It is frustrating and painful to hear him talk about something he dreams of, yet have no idea how to give him the tools to accomplish it.
This spring we went to the Caribbean for spring break. And when we landed and were dragging our five kids and our luggage through customs, I saw a family trudging ahead of us in the same line.
There were three young boys, a mother and a father. The dad was wearing a baseball cap. The mom was petite with dark hair, and she was walking very, very closely to one of the boy’s who looked to be around Jack’s age. He hopping up and down and twitching his fingers.
Another autism mom.
I wanted to ask her a million questions.
How old is he? Does he talk? Does he have an aide in school?
Does she wish life was different?
Does she feel overwhelmed and lost and scared and anxious?
Instead I reached out my hand and brushed her shoulder with my fingers.
“Hey, Mama. Long day?”
“Yes,” she smiled. “Very long.”
I caught up with her a few days later. We were staying at the same resort, and one morning she walked over to where I was sitting and watching the kids on the water slide. Without ceremony, she sat in the chair next to mine.
Her name was Melissa, and her middle son was Landon. He has autism. He doesn’t have language, and he loves pot holders. Every day she drives him an hour each way to school.
“Yeah,” she said, her light blue eyes twinkling. “It really sucks sometimes. But I love him more than anything in the world.”
I know we’re lucky, because Jack is considered high-functioning. He talks. He is potty-trained. He can have conversations, as long as it’s about frosting or license plates or Nicki Minaj.
But for others, there is less to celebrate. For some families, autism is little more than an upwards travail.
No cakes. No baking. No words. Sometimes, no sleep.
Aware, impair, unfair.
It is a road no one would choose, and yet there are many, many footprints on the bumpy, messy, uneven path. And high or low or nestled somewhere in between, we all want the same things for the complicated people in our lives.
We want them to know happiness.
We want them to know love. And hope and forgiveness and joy.
We want them to stay safe.
Most of all, we want them to live the life they wish for themselves.
“He did say a word last year,” Melissa said as she got up from her chair. “It was his first word in seven years.”
“Really?” I leaned toward her. “What did he say?”
“He said Mom. He said it on Christmas morning.” And then she walked away to find some sunscreen. Remembering her silhouette in the brilliant sunshine, I know what’s missing in Autism Awareness month.
Without you, autism awareness is an exclamation without a point, or a balloon without enough air. It is lacking. Because without you, the breathtakingly unusual person in your life would simply drift—it is you who keeps him or her or them afloat and buoyant.
You make appointments for speech and OT and the neurologist.
You change soaked sheets in the middle of the night or wipe poop off the walls in the afternoon.
You cry yourself to sleep after researching preschools online.
I hear you.
I see you.
You are not alone.
You cut fruit for a salad for the nine-thousandth four hundred and fifty-second time, even though the person at your table refused to try even a little bite the first nine-thousand four hundred and fifty-first times.
Aware, unfair, ripe pear.
You are a child who feels unheard within your own family, because autism’s voice can be so loud. You watch Disney movies when you’d rather watch Transformers, you listen to hours of Minecraft, you eat pink camouflage cake on your twelfth birthday.
You are not invisible.
You stand in church next to a tall, gangly boy in a red jacket and let him wind his fingers through your long, wavy hair because you know this keeps him calm.
Aware, beware, long hair.
You are trying so hard to hold on to your marriage.
You are trying to make people understand.
You feel like you could literally go crazy and tear out your own hair at the injustice of it all. And if you have to listen to that dumb puppet Elmo singing one more nanosecond, you just might run right out the door.
You wish there was a crystal ball to tell you how this will all turn out.
You can’t decide if you should have another baby.
You wish he would sleep.
You wish she would talk.
You are tired and scared.
You are taking it day by day, night by night—sometimes minute by minute.
You are the front line and the middle march and the last hope.
Yet even on the bleakest days, your heart can soar with hope and love and pride. Maybe it’s a single new word or a bite of pizza; maybe it’s a full night of sleep or a trip to the grocery store without a meltdown. But it’s there; your very own autism awareness.
You are an autism mother and father, brother and sister. An autism grandma and grandpa and cousin and aunt and neighbor and friend. And if I could, I would send you a warm cinnamon roll with lots and lots of frosting.
But I can’t, so instead I will tell you a little secret: because of you, I reach into the cabinet for the cake mix and tell my son to take out the pans.
Aware, bakeware, to share.
This April, I’d like to do more than just increase awareness about tantrums and speech delays. I’d like to honor those people behind the people, the ones who work every day to keep their balloons aloft.
How about you do it with me? How about you put the name, and maybe a picture, of a special person who handles the daily care of an unusual person with grace and compassion in the comments below, or here on Facebook?
I’ll go first.
For Melissa. On Christmas day and always, you are an autism mom.
March 30, 2015 @ 12:16 pm
Hi Carrie – I have an answer for you: –
On 18 December 2007 The United Nations General Assembly adopted a resolution which declared 2 April as World Autism Awareness Day (WAAD). This United Nations resolution declares WAAD as one of only four health-specific United Nations Days. Its purpose is to shine a bright light on ASD which effects tens of millions of people around the world. They did it to express deep concern at the prevalence and high rate of ASD in children of all regions of the world, which they view as a growing global health crisis.
March 30, 2015 @ 12:21 pm
For Linda, an autism mom who celebrates the good and tolerates the bad.
March 30, 2015 @ 2:09 pm
For Leigh, my sister-in-law, who is such an awesome mom to Sam (who is so very, very smart that it’s scary) and Drew, even though I know she feels overwhelmed at times.
For Jim, her husband, who does so much and works so hard for his family.
For Drew, who will be Sam’s best buddy, I’m sure.
For Sam, who we all love so very, very much.
March 30, 2015 @ 2:25 pm
Sarah Jean. ??
March 30, 2015 @ 2:43 pm
I am so grateful that such loving parents exist for all children but particularly those that can be so difficult to care for. Thanks to all the autism moms and dads. I am in awe.
March 30, 2015 @ 3:22 pm
Reblogged this on Mastering Adulthood and commented:
Yes. Just YES. So beautifully written and said.
March 30, 2015 @ 3:32 pm
All the parents of the children on my caseload. For putting one foot in front of the other every day.
Michael J. Wagner
March 30, 2015 @ 3:37 pm
For Katie, and Lenora
March 30, 2015 @ 5:09 pm
For my mother-in-law Patty Calabrese, who has legal custody of my 3 nephews, all of whom have Autism, & my 12-year-old niece. She gives these boys everything she can to make sure they have what they need.
March 30, 2015 @ 5:51 pm
For my darling daughter, Heather, an autism mom to identical twin 2-year-old boys who have no language. She has recently begun this journey and is handling it with grace and love. I am in awe of her and very proud.
March 30, 2015 @ 8:16 pm
To Amy Martinez the most amazing Sunday school teacher for my daughter with autism. Thank you for being a beautiful caring person!!
Kim Landis Black
March 30, 2015 @ 10:00 pm
I can say that you have made me much more aware of what goes on inside the day to day life of an autism family. I have no idea how I came to find your blog, but I can tell you I look forward to it every Monday.
I have been associated with a program for a long time that pairs special needs kids with partners to help raise a lamb for our county fair. My kids are now 19 & 21 and have helped in that program since they were young. The program has a lot of diversity with the “special needs” component. Autism is the biggest number of kids that participate. We have had various families in our lives over the years that we have been close with. Many will be life long friends. We see those families at our farm and at our fair. We learn their behaviors and triggers and know how to avoid problems or handle the issues that come up because of a trigger. These things attached to these people also become our normal. We don’t see a diagnosis, we see our friends.
Our program had to go through an overhaul process last year because of some misconduct in another county. After 25 years the program that started in our county and was the first of its kind in the nation was put under a microscope to make sure things were done correctly. The only two things we had to change was bidding out the cost of the lambs and not letting siblings work together. The program wanted to make sure that children were optimizing their experience by meeting other families and working with different partners. 25 years of success a good things happening!
My kids are both at the same university now. My daughter is a junior working toward an agriculture education degree. She thinks she will continue school to get her masters degree in special education. The lamb program and another program she worked kast summer with underprivileged kids shifted her focus to working with younger kids. My son is a freshman in the pre-vet program. He hated not being able to continue the lamb project this year because of school and other summer obligations. They both have used the program in presentations and other projects.
There are a lot of times since my family was young that we have had experience with autism and other “special needs” kids and their families. We don’t see the differences and the struggles. We see the people that are there, not the diagnosis.
I can’t list just autism families, but these parents are great at what they have done or do!
Stacy and Rosella
March 30, 2015 @ 10:08 pm
For Donna Brown – mom to Jacob – who in his 30s has been diagnosed with Asperger’s for 14 years – for all the years of confusion, frustration, and exhaustion.
March 30, 2015 @ 10:10 pm
For Melanie Medina Metzger – cause seeing her with her young man is an inspiration!
March 30, 2015 @ 11:20 pm
To my daughter-in-law, Melissa, and my son Jason. You are doing a great job with Harrison. He’s an amazing child who has come so far, and it’s all because he has two very loving and dedicated parents. Your family is behind you all the way. Grandma and Grandpa love that little boy more than life itself.
March 31, 2015 @ 5:09 am
Reblogged this on oshriradhekrishnabole.
March 31, 2015 @ 5:45 am
My wife Melanie who makes the difficult, easy and the unmanageable, manageable. She is the Angel in Gabriel’s life as much as he is the Angel in ours.
March 31, 2015 @ 7:18 am
For Nicole, who is sonmuch more than just a teacher.
March 31, 2015 @ 7:32 am
For my friend, Jenny, for being an amazing mom to Ryan.
March 31, 2015 @ 8:02 am
My daughter doesn’t have autism but the words you wrote reminded me of her growing up. I wrote the other day that she held us hostage and she did in a way. It wasn’t her fault but it was the result. It’s beyond hard and I don’t know how we survived but we did. She’s twenty-two now. She is my hard gift and I love her something fierce.
March 31, 2015 @ 8:17 am
For my friend, Gayle, widowed grandmother to Patrick, who lost his single mother to cancer after a 7 year battle. Dear Patrick will graduate from high school in May, and was home schooled by his mom, and grandmother.
And to all the families and caregivers and teachers and therapists and medical personnel, and friends, God bless you!
March 31, 2015 @ 11:52 am
For my oldest son, Gregory. His two younger siblings are on the Spectrum and eventually he will assume the mantle of Champion as he realizes the world can be a mean, cruel place. I understand this mantle better than some because I had it when I was a kid since my younger brother was a special needs child.
It’s a heavy burden to bear and I merit the heartbreak he will feel. I hope, with all of my being that bullying will become an obsolete action that old people tell stories about, like walking 10 miles to school…up hill, both ways…in the snow.
My heart breaks now just thinking about it. But I try not to let my mind dwell on what isn’t, yet.
As an Autism Parent, we can’t. We have one foot on the future with what we can control and the rest of us in The Now because it’s easier that way. Easier on us. And they need us to be.
March 31, 2015 @ 12:08 pm
For the families I can’t name of the students at my school…you are heroes. God bless you all.
March 31, 2015 @ 12:20 pm
For my friend Kathie R., who despite a million roadblocks along the way has managed to raise her beautiful autstic daughter to young adulthood. So much admiration, so much love.
March 31, 2015 @ 12:21 pm
For my friend Kathie R., who despite a million roadblocks along the way has managed to raise her beautiful daughter who has ASD to young adulthood, helping her to realize her potential. So much admiration, so much love.
March 31, 2015 @ 2:09 pm
For my daughter and son-in-law, Michelle & Josh, for being such awesome parents to my wonderful, beautiful, awe-inspiring 5-year old grandson. Without their tireless efforts, Cam would not be anywhere near the extremely high functioning little boy he is today.
March 31, 2015 @ 4:36 pm
For Jill, who has made those of us who are her Facebook followers, so much more aware of the meaning(s) of autism. And less judgmental about unruly children. It might be autism. And much more sympathetic and understanding, in our limited way.
March 31, 2015 @ 4:58 pm
For Becky who is a great Mom to Casey and so much fun to have lunch and commiserate with! We’re ok with doing the best we can!
March 31, 2015 @ 5:33 pm
My my Ninja Noah who hasn’t yet found his voice, whom we love dearly!
March 31, 2015 @ 6:03 pm
Tammy Chapman one of my best friends.. she is an awesome mom and a great friend, she is one strong momma ..going through alot right now with her little fella and my heart and prayers go out to her… Kudos to you !!
March 31, 2015 @ 11:18 pm
April 1, 2015 @ 2:39 am
Reblogged this on sunshine in puddles and commented:
Most often I write about my life, our life with cerebral palsy and the victories and challenges that accompany it. Our foray into the world of additional needs has made us many amazing friends. A lot of these friends own smiles and tears are because Autism is part of their lives. Tomorrow is Autism Awareness Day. Here is a blog that offers heartfelt insight…you may need a tissue, I did. To all our friends on the Autism Spectrum and those who love and care for them.
April 1, 2015 @ 2:43 am
For so many courageous families we have met along the way. Reblogged in https://sunshineinpuddles.wordpress.com/
April 1, 2015 @ 2:54 am
For me it’s to remind our dream team how much we appreciate what they do everyday. A special month for them. Yes, as parents we work hard EVERYDAY but I’d pull out my hair if it wasn’t for all the teachers and therapists that are a part of our village! This week they get bling…….next week rice krispy treats! Our team deserves more than just a holiday celebration……I like that it’s the entire month of April! 🙂
April 1, 2015 @ 10:09 am
For my daughter, A., who is 16: she has Asperger’s herself but is so kind and patient with her brother J., age 12, who has ASD, developmental disabilities, and seizures. Thanks for being such a great sister and for laughing when he helped himself to ALL THE FRIES.
April 1, 2015 @ 10:28 am
For my daughter Paula. mother of a boy with Aspergers who will graduate from HS this year with a Vet Tech certificate and a college plan to become a vet. It’s because of his Mom that he’s done so well.
Also for his younger brother who has had to be the big brother for most of his life.
Both of them have done an incredible job.
April 2, 2015 @ 8:21 am
For all those families who devote their lives to autistic children. Denise, Jennifer, MaryEllen & Catherine… This was such a powerful article.
April 2, 2015 @ 2:58 pm
For all my students on the spectrum and the professionals and family members who’ve devoted countless hours to supporting them, for Kelly Leslie Ardith Kathy Barb and Patricia who have showed me amazing grace, perseverance, and hope through challenging parenting situations, for all the siblings I’ve seen stretch and grow as they journey beside their brother or sister, and for all we’re learning and changing to make a brighter future.
April 3, 2015 @ 8:13 am
For me sweet son Drew, age 9, who keeps plugging along despite the challenges of ASD.
April 3, 2015 @ 2:12 pm
This is for my wife Annette who never gives up HOPE. She endlessly searches for anything to help our son Anthony. Ot speech therapy floortime homeopathic Linda mood-bell Dr Goldberg Dr Greenspan and ahost of diets and treatments. Only families of ” Our kids” can even begin to understand. I can’t Thank my wife enough for all she does. All while working full time as a teacher. Some of us are stronger than others! This is one amazing woman. Her goal is for a full recovery. Yes it will happen! She will see to it I’m sure.
Click Here: Vol. 25 - Sandra Peoples
April 4, 2015 @ 10:29 am
[…] What Does Autism Awareness Even Mean? from Carrie Cariello. I wasn’t familiar with Carrie’s blog but I love this post. Her son with autism is different from James, but we have lots of the same struggles and triumphs! […]
For the Days When No One Is Wearing Blue, but You're All Too Aware of Autism - Sandra Peoples
April 6, 2015 @ 6:37 am
[…] This is our fourth year completely aware of autism, not just on April 2nd, but every day of the year. Through the years, Autism Awareness Month has brought out different emotions. Appreciation for sure, for so many lighting it up blue and for all the posts from fellow autism parents who make me laugh or cry (or both). […]
Food for Thought - Family Synapse
April 6, 2015 @ 5:26 pm
[…] What Does Autism Awareness Even Mean? […]
Elise (Kids Included Together)
April 6, 2015 @ 11:17 pm
Wow!!! Beautiful! Thank you so much for reminding us how much love and patience goes into caring for those with unique challenges. You are a hero! As are the many autism moms I know and have had the pleasure to work with.
April 7, 2015 @ 9:27 pm
For the wonderful teachers at Discovery Montessori who taught our son to read at 12 years old!