A is for Autism
My son Jack has autism.
Sometimes this makes him sad.
Other times it makes him angry, and frustrated, and scared.
When Jack was very small I had to take him for a lot of tests so we could figure out why he didn’t talk and he screamed so much and slept so little.
We were looking for answers—we wanted to know why he stared blankly at the wall when we tried to talk to him, and why he didn’t play peek-a-boo or point at the airplanes in the sky.
One time he and I were waiting in the hallway for the test to start. We were sitting on plastic chairs and Jack kept hopping on and off and twirling along the tiled floor. It was getting on my nerves but I didn’t tell him to stop because I was too tired.
After about fifteen minutes the—I don’t know, what would I call her? The moderator? The test-giver? The young woman with glasses who was about to spend an hour with my son trying to get him to say something so she could mark it on her clipboard and tell me not to worry?
Anyway, she came over to us and she called his name softly and took his hand. He walked away and never looked back at me. He was wearing blue shorts and a red t-shirt. The t-shirt had hitched up a little bit and I could see the top of his diaper.
Then I followed her into a room and I stood behind a two-way mirror and watched them tell him to point to pictures in a book and roll a ball back and forth and sing to a doll and it was perhaps the most depressing time of my life.
Jack! Jack, buddy. Do you see the dog? Point to the dog. Where’s the dog, Jack?
He did not point, or roll the ball, or sing.
My son Jack has autism.
Sometimes this makes me sad.
Other times it makes me angry, and frustrated, and scared.
Many, many people have autism. So many people, in fact, that April is Autism Awareness Month.
I think this is pretty cool because, you know, people should learn about other people who can be rigid and seem anxious and maybe don’t like to be touched a lot.
More money for research is always good too. I mean, if some scientist somewhere could finally figure out why my son Jack is afraid of the color orange, well, that would make my life a lot easier right about now.
But the thing is, although it’s often considered a journey of one, autism is actually a voyage of many. Along for the ride are people who hope, and hurt, and love, and work harder than they’d ever imagined.
And I have to tell you, loving something with autism, well, it is no ordinary love. It requires patience and determination and strength. It is lonely, and isolating.
Picture a single droplet of water in a large, clear pond. The droplet lands and it makes the tiniest splash, and the splash turns into a million little waves on the surface.
Underneath the waves, people are swimming and working and trying to keep their person with autism afloat. They are going to meetings and making sticker charts and learning about behavior therapy. Every day, they are holding their breath.
This year, Autism Awareness Month is for the teachers who see beyond a diagnosis stamped on a form, and understand the potential within a child.
And for the paraprofessionals—the one-to-one aides who walk beside their kiddos in the hallway and make sure they get to the bathroom on time and remind them to take a sensory break if they get too antsy.
It’s for the father who stayed up half the night researching articles online and looking up statistics and trying to figure out where it all came from and where it’s all going, because sometimes grief demands an answer.
And yet sometimes, there is no answer.
This month is for the dad who is afraid to leave his teenage son alone with anyone else because one minute his son is great and happy and fine and la la la and then all at once, without any warning whatsoever, he changes. He screams, and he rages. He whirls around and grabs dishes and glasses from the counter and hurls them to the floor where they smash into a zillion pieces.
When this happens the dad has to hold his big tall son in his arms and whisper softly in his ear and rock him against his body until they both sink to the floor and the boy is calm again.
Then this dad has to get out the dustpan and the broom and sweep up all the shattered pieces of glass so no one will cut their foot. The floor looks clean—as though nothing ever even happened—yet inside, both father and son are breaking apart.
It’s for grandparents who long to connect with the unusual child in their world.
And for every mother who is watching through the glass and crossing her fingers and praying her little boy will just once—just one single time—point to the picture of the dog in the big book propped open on the floor.
And the mom who walks out of a school meeting trying to hold her tears inside of her heart and then waits until she sits in the car and buckles her seat belt and turns the key in the ignition before she lets them flow like a soundless, private river.
And the autism mama who wants to throw her child a birthday party but can’t think of a single person to invite.
You are not alone. I know it feels it, but I promise you are not, because I am right here with you.
It is for the man who returns home after a long day of work and his wife is frazzled and his son is off the wall and autism occupies the house like a heartbeat and he wants to turn on his heel, and walk right back out the door.
It is for the woman who gave up a career to stay home with her enigmatic child, and now she spends her days repeating words over and over and listening to Elmo and worrying that it will never be enough–that she is not enough.
You are enough. Do you hear me? You are enough.
This month is for every family who is right now trapped inside of autism’s raging blizzard of anxiety and tantrums and rigidity, longing for winter’s long-awaited thaw.
I offer you patience and endurance and bright new dishes in a box.
I offer you cool green mornings, and sunlit afternoons.
I offer you spring.
Share it with us. Share it with him.
You belong here. You belong in April.
Do you have anyone you’d like to honor this April for Autism Awareness Month? Please, leave a comment and share with us all of the special people who show up every day, hold their breath, and swim.
March 27, 2017 @ 9:22 am
This is for Anthony, a student I had in my classroom many years ago. With each article I learn a little more about you. I could have done more but I did as much as I could with what I knew and I think you were happy. Your mom was a gift to you and to me.
March 27, 2017 @ 10:16 am
This is for my son Luke who is 4 years old and has autism. Also, for my hair dresser who comes to my house every 6 weeks and cuts his hair in front of the television blaring his current favorite Pixar movie while he still screams. Also, for the graduate assistant at the local University who works with my boy who loves to swim with the most patience every week. Also, for his teacher at school who can spin any negative experience into a positive one and the one who during IEP meetings keeps the glimmer of hope shining even in our toughest moment. And of course for my husband, who loves him more than I have ever seen him love anyone and who makes me laugh and encourages me when my optimism starts to waiver. And for you Carrie Cariello…Your stories of Jack when he was younger remind me so much of Luke. I have read all your books and look so forward for the email each Monday morning. Your posts are so relatable and make me feel like we aren’t alone. I love Luke more than anything, but that doesn’t mean that I don’t find myself angry and frustrated with autism. Our journey for the past 2 1/2 years has had extreme highs and lows, but through patience, understanding, love, and certainly your blog we are getting stronger each day.
March 27, 2017 @ 10:28 am
I want to honour my brother in law and sister in law who so willingly and happily take our son overnight on the rare occasion when we go out for dinner or a concert. They are unfazed by bathroom issues, medication-giving, or anything else that might be involved. They buy his favourite snacks. They look at pictures and videos with him on the computer and watch TV with him. They look out the window with him and watch seagulls and geese and trucks. They gush about how much fun it is to have him at their house. We are so thankful that they only live 10 minutes away.
March 27, 2017 @ 2:16 pm
Thank you Carrie. Your stories of your family are heartwarming.
March 27, 2017 @ 2:24 pm
This is especially for my parents, who when my daughter’s mother turned her back on us and never looked back at age 7, stepped in and took over most of the motherly job until they passed, dad in 1994 and mom in 2005. Also for the many doctors, nurses, therapists, attorneys, teachers, 1:1 aides, bus drivers, social workers, plan co-ordinators, other special-needs parents, day-care workers, friends and extended family, and even strangers who have offered to help in many ways during this 32-year journey.
My somewhat questionable health now at age 72 makes it necessary to start looking for alternative living conditions for my sweet girl, but it has been an incredibly blessed journey for me, and hopefully for her too. When there is no communication from her except smiles, kisses, hugs and laughter, it seems all of us put together, have been incredibly successful in keeping her safe, and happy. God bless all who have helped, and continue to help along the way, including you, Carrie, and friends. Heather and I have been unbelievably blessed by you all.
March 27, 2017 @ 3:31 pm
For my son Ian who watches out for his brother Drew with Autism. Ian has to make sacrifices weekly, depending on Drew’s mood and what we can and can’t do. He even tries to include Drew repeatedly with things he is doing even when Drew gets upset or mad at him because it didn’t go his way. I love Ian for trying to understand why Drew is a little different, it doesn’t mean Ian doesn’t get upset or irritated with his brother but for the most part Ian is a spectacular big brother to Drew.
March 27, 2017 @ 8:55 pm
For:
Nana, Papa, Tia, Vavo, Auntie Sue, Auntie Julie, Uncle Emile, Uncle Chris, Daniel, Andrew, Jacob, Hayley, Ethan, Carter, Sierra, Raiden, Sienna, Josh, Danielle, Titi Saul, Titia Patricia, Nadia, Sabrina, Step by Step staff, Ms. Sharon, Ms. Doucet, Auntie Stephanie, Uncle Mark, Tayah, Jacob, Auntie Rocky, Auntie Khema, Uncle Don, Ryan, Dhillon, Saheda, Grace, Stu, Sammy, Baby J, Paul, Cathy, and Lucy.
For all of you, family, friends, and professionals, you are such an important part of our lives in so many different ways. We cannot even come close to repaying you for all of your hard work, patience, and caring that you’ve given to Grayson and to us. A thousand thank yous during Autism Awareness Month.
And to Salomao…I can’t imagine walking this path without you…you are a gift to us…
March 28, 2017 @ 9:58 am
We do what comes naturally because we all love Grayson. But Grayson couldn’t of asked for any better parents than Sal and Karen.Grayson is blessed to have such caring and loving parents to give him all the love and support he needs throughout his journey with autism. Love titi Saul, titia Pat, Raiden & Sienna
March 28, 2017 @ 10:17 am
Thank you for choosing me to walk this path with you both and Grayson – for me it is the gift of Grayson’s internal strength (still working on that body!), bravery, smile, laugh, jump-in-your-lap-hug-because-someone-coughed, and play that continues to light me up and challenge me to think bigger, think broader, and work harder…all for you my Grayson 🙂
March 28, 2017 @ 2:40 pm
Karen and Sal, you are both an incredible inspiration to me. We adore Grayson and you both and are so incredibly blessed to call you family. I have never seen such dedicated hard working parents and you inspire me every say to be a better mom. Grayson is blessed to have you for parents. We are also so thankful the friendship he has with Tayah and Jacob. His smile, laugh and loving personality are a result of the love he receives daily. We are humbled to be part of your journey.
March 28, 2017 @ 3:07 pm
WE are on the same path together….making our friendship stronger day by day! Our world is different, it is impossible to explain challenges we face…..we try to focus on positives with beautiful smiles each and every day! You are a wonderful Mom, amazing woman, a great friend and colleague Karen.
I like to Thank you for all your support as well. Sending love and hugs for Grayson!
March 30, 2017 @ 7:24 am
We are so blessed to be in each others lives. We love and support you all just as you have always done for us. Always and forever, we love you Karen, Sal and Grayson!
March 27, 2017 @ 9:20 pm
This is for all of the precious kids who attend the afterschool program for special needs kids that I work at every day. They inspire me each and every day. It’s also for the wonderful loving parents of these same kid….who love their children and fight for their children to be all they can be – trusting in Hisability!
March 28, 2017 @ 8:01 am
God bless you for your dedication to our kids and our families.
March 28, 2017 @ 9:08 pm
Thank you so much, Mr. Wilcox. I consider it an honor to be spend my days with these kids. They teach me so much and love me in their own special ways.
March 27, 2017 @ 11:12 pm
HI Carrie- Your story is heart wrenching. Yet it is so true. I stayed home for much of my autistic’s sons childhood and am still looking for some career that brings me some sort of fulfillment. I missed out on a professional career so I could be home. And even though my son is 24, I still feel like he needs me to take care of him on so many levels. Yet, I often wonder if I am enabling him by helping with laundry, or cooking dinner, or by waking him up for class. Is it normal? If I didn’t do these things, would he make it in this world? Not sure. Still wondering how my actions are contributing to his disability. Maybe if I asked him to move out, he would have to figure all these things out on his own. Maybe then, he would want to do his homework, meet with the tutors and resource specialists and professors during their office hours. Maybe then, he would take responsibility for his own life and care about graduating.
But maybe not. Maybe he will never be able to do these activities on his own. Maybe I will always have him living with us at home, eating our dinner, not washing or folding his own laundry, etc…
Your story is a young one. You still have yet to discover some of what it takes to live with an adult with autism. I keep reading your blog because it reminds me of the pain I went through and still go through. It can be hard, but it brings awareness to this strange yet incomprehensible illness. Some days I feel like “we got this.” And others it seems like the problems never get resolved.
March 28, 2017 @ 8:29 am
This is for my son and daughter who are working so hard to make life work for them and their 3 children including their youngest who has autism. This is for his other grandmother who takes him to school and has embraced all the social stories, communication methods and other suggestions from therapists. This is for my sweet grandson’s sisters who play with him asnd read to him and fight with him and just love him. Thank you Carrie for sharing your journey.
March 28, 2017 @ 8:49 am
This is for my grandson–also named Jack. He will turn 6 in April, and when I read your comment, Carrie, about wanting to throw your son a party but not being able to think of children to invite, I couldn’t help but cry because that is exactly what my sweet daughter-in-law said about her Jack. Yet, I praise God for all the ways Jack brings so much joy to our lives. As we learn to cope with Autism, God shows us daily that Jack is His creation, and we have so much to be thankful for.
March 28, 2017 @ 5:25 pm
This is for my grandson and his mother, both working together to find answers on dealing with Autism. Zachary is going to be 18 and a senior in high school. His father left when he was only nine and his brother seven. She does not have the answers to his future after high school, but continues to search for the avenue that will be the best for him.
I commend my daughter on bringing up two boys, one with Autism alone and no Father to help. Working to support herself and the boys has not been easy. We the grandparents thank God for both these delightful boys in our lives as well as our daughter who never gives up. My heart goes out to Carrie and all the wonderful parents, children that God put in their care.
I pray each and everyday for all of you.
March 29, 2017 @ 4:09 pm
This is for all those wonderful kids who walked into my classroom and tried SO hard to live up to a “standard” set by some men in dark suits somewhere in Washington and Concord who had never sat with, talked with, or worked with an autistic student and had never known the depths of wonderful in each one of them. Each one of those kids was brave, and beautiful, and a warrior. And I loved them.
March 31, 2017 @ 9:16 am
For my amazing students, co-workers, and families, past and present, who have worked tirelessly and passionately to both raise these amazing children in the best way we know how while simultaneously trying to change the world so they could be seen and accepted. They all have changed my life and the way I see the world in big, and small, ways. <3
April 17, 2017 @ 4:31 pm
For my amazing son, Kyle, who will be 13 in June. This autism adventure has been an amusement park, a haunted house, a jungle safari, a bungee jump, a peaceful park…
The unpredictable makes him incredibly anxious and therefore, his life, our lives… must maintain as much predictability as possible. That is not always easy to do! He must know what is happening, where, when & how things will unfold… an itinerary per se, for his daily life. And if you plan a big outing, be prepared to let him obsess over it until the very hour you go. The route we will drive, the hours it will take, the absolute first thing you’ll do to the absolute last you’ll do… and have it go as planned and stay “on time.” He is such a blessing in our life. He has taught me patience like never before. He has kept me sharp and alert and tested my own strength to overcome!
His school mentors, Special Ed teachers, Aides, Bus driver, Therapists, Pediatrician, Dentist… They all have tuned in to Kyle’s unique behaviors & found ways to engage his interest and his trust!