Ask, and I Will Tell You
My 13-year old son Jack has autism. Over time, people have asked me many, many questions about both him and his diagnosis.
Is it mild?
Is it severe?
Is it, you know, bad?
I never, ever mind when someone asks me a question. In fact, I love it. I want to tell you all about him and what he does and who he is.
I want to tell you that some days are bad and other days are good, and right now it’s kind of in-between because he won’t stop singing Ring Around the Rosie over and over under his breath. It’s driving me a little nuts, to be honest.
I want to tell you that today he insisted we buy blue Jello when we went to the grocery store, and I was tired and kind of not in the mood to argue with him so I agreed. I told him we would make it later in the afternoon—4:00, to be precise, because with Jack you always have to be very, very precise—and when we got home I hid the box so he wouldn’t obsess about it.
At exactly 3:42 he began to circle the kitchen. I told him he needed to wait a few minutes.
At 3:54 he started to flap his hands and rub his hair and chant Jello Jello Jello. I told him to hang on and I would get it out for him.
Then I couldn’t remember where I hid the dumb box and he was frantic and we were both looking through all of the cabinets until I remembered—a-ha!—that I hid it in the coat closet. He never thinks to look in the coat closet.
If you ask me what the hardest thing is about autism I will tell you that, besides losing things in the coat closet, it is the perpetual cycle of mourning I experience.
I mean, I no longer really mourn the fact that he’s diagnosed with autism. But as he gets older, I find myself grieving the smaller, more subtle losses. They are like a paper cut that never heals—not bad enough for a Band-Aid, but damn, it stings.
It happened just the other night. It was the kind of gorgeous summer evening where the sun casts long, rich shadows across the lawn and kids stay up late past their bedtime and the air feels like velvet.
By 7:00, Jack was sitting in his bathrobe at the counter, eating his nightly bowl of ice cream and talking about which Scooby Doo episode he was planning to watch before bed.
I thought about all the other teenage boys who were probably out at sleepovers or playing in the yard with friends or making google eyes at neighborhood girls, and I felt so overcome with sadness that I had to look away.
Listen, I don’t want you to feel sorry for me, or for him. I just want you to know that once upon a time, I wanted the same things for my son that you want for your own children.
I wanted trophies on the mantle, and bashful chatter about cute girls. I wanted him to go to college.
I wanted to shout across the lawn that it’s getting dark, and it’s time to come inside. I wanted him to argue with me for five more minutes with his friends, please Mom, just let us finish this game!
Jack has no friends.
He hates games.
I’m not sure about the college thing. I’m trying not to think that far ahead.
Ask me anything. I mean it.
He looks so normal, how can he have autism?
Kids like him need routine, right?
Do loud noises bother him?
Does he have a hard time with the tags on his shirt and stuff?
Yes, he can look normal for a few seconds at a time, when he’s occupied with his I Touch or watching TV, but then the music within his body beckons to him, and he springs up, and begins a mysterious dance to a song only he can hear.
Yes, he needs routine. He needs routine the way you and I need air. He can’t breathe unless he knows what time dinner is and when his bus is coming in the morning. His schedule makes him feel safe.
Yes, loud noises bother him. He wears headphones to the fireworks on the fourth of July, and also when he makes a milkshake because the blender is too loud.
He can use a blender, as long as I’m in the kitchen with him.
He loves milkshakes.
The funny thing is tags don’t bother him at all. He can wear almost anything. He prefers turtlenecks in the winter because the neck is high and I think it makes him feel cozy, but otherwise he wears just regular clothes.
That’s autism for you. There is no prototype. There is no one-size-fits-all. There are just a lot of turtlenecks and headphones.
I want to tell you how yesterday he recited the entire product overview of the Toyota SE Minivan, and explain that it is for people who hesitate to invest in a minivan because they prefer something sportier, yet when I asked him what the word hesitate means, he didn’t know.
How do you do it?
If you ask me this, I will tell you that I don’t have a choice. Day after day, I have to hide Jello boxes and explain what it means to hesitate. I have to swallow the lump in my throat and rinse out the ice cream bowl and kiss my tender boy goodnight, all while the sun lingers warmly in a tangerine sky.
You would do the same. I know you would.
And it’s really not so bad. You kind of get used to it, and before you know it you’ll be driving in the car or washing the dishes, and you’ll realize you haven’t thought about what life would be like without autism in almost a week. Or maybe days. Either way, you haven’t thought about it in a while.
I think if he could tell you, my Jack-a-boo would say that for him the hardest part about autism is knowing he doesn’t quite belong. He is different, and knows he’s different, and he hates being different, but he has no idea how to make himself the same.
In the nicest way possible, I will tell you not to take any of it for granted. I will tell you to try and enjoy all the small moments I will miss—like arguing with your teenager about an after-dark curfew and whether or not their grades are going to help them get into the right college.
How do you help him?
What does he like to do?
Do you take him places?
All day long, I think of new things for him to do, like organize the bikes in the garage, or help me figure out how much milk we need to get through the week. He gets mad at me, and sometimes I get mad back at him, but I do it anyway. I do this to remind him that he is stronger than he thinks he is.
I bring him as many places as I can, like the bank to make a deposit, or kayaking on the lake, or to buy corn at a farm stand on the side of the road. I’m not going to lie. It is a lot of work. He gets mad at me and sometimes I get mad back at him, but I do it anyway. I do this to remind myself that I am stronger than I think I am.
Once we get to all these places, I introduce him to everyone around us. I say, hello, this is Jack and then I tell him to ask for a kayak and count out the money and wait for his change. It’s not always easy. Sometimes people stare at us and Jack stares back at them, but I do it anyway.
I do this to remind all of us that when it comes to those who are different, we are stronger than we think we are.
You can ask me anything. I promise, I will do my best to answer.
When I’m done telling you everything I can think of to say about my sweet, earnest, complicated son, I’ll probably pause for a moment. Then I might ask you a question.
Will you help him belong?
Leah
August 7, 2017 @ 6:45 am
Do you respond to questions when Jack can hear? Does he mind being discussed with strangers, in front of him? My grandson does not like being talked about, so it’s not so easy to respond to questions. Just wondering how you handle that situation.
Janet Houston
August 7, 2017 @ 8:13 am
My grandson, seven years old, is the same way. If he’s being discussed, he will do his best to create a distraction, even at the Dr.s office.
Carrie Cariello
August 7, 2017 @ 8:20 am
Well….it can be complicated. Jack wasn’t always crazy about us “explaining” him around others, but I’ve always told him that autism is not a secret or something embarrassing, it just is a part of him, the same as his blue eyes and brown hair.
Lately he’s been trying to use it as an excuse, “You know! I have the autism.” 😉
Kristan Buege Miller
August 7, 2017 @ 7:02 am
Your words describe our life completely! My son is 18 years old and going into the 11th grade. Right now I have my mom calling me every time she talks to someone who knows someone with autism that has a job. My mom is really worried about what Mitchell will do once he graduates (well not really graduating, just a completion certificate.) I know that she means well but she is making me crazy! I keep telling her that everything keeps changing, mostly for the better with what job placements and “college” programs are out there. So two years down the road will look a lot different than this year. Keep writing and I will keep reading! I post for the Mid Michigan Autism Association and your posts always make it to MMAA’s page.
Janet Houston
August 7, 2017 @ 8:20 am
I enjoy your poignant posts each week, many times with a lump in my throat. It is comforting to know there are many of us who deal with ASD. My grandson is 7, and was not able to complete the last school year in the classroom because of his disruptions.
He had to have individual tutoring to finish the year. This year he will attend a new school operated by Easter Seals. My hopes are high, but as we know, there’s not magic switch to create a hoped for change. He’s very intelligent & sometimes that’s a problem in itself. Thank you for posting & sharing Jack with all of us.
NickyB.
August 7, 2017 @ 9:01 am
I literally could’ve written most of this post myself. So many similarities with my MJ and how I feel.
Shine Bright
August 7, 2017 @ 8:59 pm
Your post is beyond amazing ? seriously I’m thankful I found your blog and as I read this I thought dang that feels so familiar. Jack sounds pretty awesome.. I too find myself thinking about all those moments I will miss out on with my daughter and then I also think screw it who wants to be normal anyway …but as strong as we are it’s not easy this i know…so hang in there and I look forward to following your page… I really like how descriptive you are by the way… don’t hold back write more and keep on being a great mom to Jack
Marsha
August 8, 2017 @ 2:48 am
Hi Carrie, this is Nurse Marsha from camp. I wanted to first thank you for sharing Jack with us this summer and secondly thank you for sharing your words, feelings and insights. Being a school nurse and a camp nurse I am always looking to learn better ways to relate to and work with our autistic kiddos. I find that your blog is a great place for me to get to know, understand and learn about my kiddos. Thanks for sharing and I hope we see Jack and your other boys next summer!
Patti
August 9, 2017 @ 9:52 pm
You are a wonderful Mom and a fabulous ambassador for autism. Jack a boo is lucky to have you. Thank you for telling this story.
Thank you, I am thankful for the normal things my boy (22) is able to do. He is on the spectrum, but functions normally in most circumstances these days. We homeschooled until senior year of high school. Work, community college, and friends are his life now. It is a blessing, I wish it for y’all, too.
Clare
August 10, 2017 @ 12:02 pm
My Jack is 13 fairly non-verbal but sounds like your Jack in many many ways. Every word reasonates with me!! We are a big community now and everyday people astound me with how they encourage my child to feel included, including his step dad who chose to join the different life we live. Who knows what the future holds for either of our Jacks but I sincerely wish the best for you, your Jack and your family x
terismyth
August 10, 2017 @ 12:06 pm
Awe. So happy to hear Marsha’s reply above. I’m glad camp went well. Yes. We have to keep these kids occupied or they go off into their own little world. At 24, my son still goes off to his room to his computer to decompress from his day. He teaches Taekwondo and is a 3rd degree black belt. He loves working with children and has found something he can do. My Andrew is still looking for his true “career” and hopes to find something full time so he can move out on his own. Motivation has always been something we have had to help him with, but he doesn’t like asking for help.
I can relate to many of your stories about how autism has affected Jack and how problems keep coming up. But i can assure you, he WILL meet friends someday. My son has many, some of which he has had since 3rd grade. Jack will find his way in this world and your patience and guidance will be exactly what he needs.
Thank you for your words. Your courage is astounding and so helpful to other parents out there who are raising their own children with autism.
Tina
August 15, 2017 @ 1:00 pm
Hi Carrie
Loved reading this. Interesting how you have also mourned and grieved. I was vilified by social media when I used these words! Still believe it though xx
Tina
Joanna Fisher
September 5, 2017 @ 5:51 pm
I am a grandparent of a soon to be 10 year old grandson who is on the Asbergers Spectrum. He was an extremely fussy baby and the family soon noticed odd behavior as he grew. His main issue is with a sensory processing disorder and clothes are his enemy. Right now, he has only been wearing one pair of yellow shorts and a zippered sweatshirt. His Mom has to wash it nightly so it is ready in the AM. Will only wear crocs and never wears underwear. Sleeps with no clothes etc. He has been going to OT for a number of years and speech therapy. He is a great baseball player but can only play for a league that provides support for children with special needs because he will only play in Crocs, yellow shorts and sweatshirt in the hot Georgia sun. I came across one of your articles and so enjoyed the way you expressed your feelings. God bless you and all your family.