This What I Am Trying to Tell You
Since early December, Jack has been wearing his huge black snow boots to school every day. He refused to wear his sneakers. He refused to pack them in his backpack. He also refused to bring an extra pair to leave at school so he could change instead of clomping around the hallways and the cafeteria and his classroom like a Clydesdale in Bogs.
And it’s not just school. He wears them to church. To the grocery store, the movies, and his grandfather’s eighty-second birthday party at the Olive Garden.
Every day, I would tell him to put his sneakers on, and every day he would say, “No! My boots! I want my boots.”
Since we are fighting many, many other battles at the moment—sleep problems and tantrums and maybe but we’re not sure, puberty—I mentally filed the boot-wearing under things I cannot care about right now, and I let it go.
But this week I noticed something smelled funny when he walked in the door from school; wet and musty, like the inside of a winter glove that never dried out.
The boots.
“Jack! Your boots stink! Tomorrow you have to wear your sneakers.”
“NO! No no no.”
“Jack, come on! You have to!”
“For my sneakers! They touch my toes.”
“Touch your toes? You mean your toes are at the end?”
“Yes. They touch.”
It is February, which means it only took me three months to finally realized he wore his boots every day because his sneakers were too small.
(Feel free to send my mother-of-the-year trophy at any time. I’ve already cleared a space on the shelf for it.)
Every week I sit at my computer and I write a bunch of stuff about our family and Jack and autism, and on Monday morning I hit the blue button that says publish.
I come up with most of my ideas about what to write while I’m driving in the car, or when I’m in the shower. All week long, I weigh very carefully the things I should and shouldn’t share, and then in the end, I share it all.
The pain, the heartbreak, the fear, the elation.
The cakes, the play dough, the sisterly love and the brotherly concern.
The Halloween costumes, the family arguments, the marital meltdowns.
The mistakes—the many, many mistakes—and the waffles on Thursdays and the lessons about grief and what it’s like to take him on a play date.
Sometimes I worry, though. I worry that maybe I tell too much and one day it will come back to haunt my tall boy of autism.
What if he gets bullied at school because of a post I’ve written?
What if he can’t get a girlfriend, or a job, or I don’t know, a passport?
I’ve been thinking about this quite a bit lately, as Jack gets older and I continue to share more and more personal details of our lives. The world is scary. Kids can be mean. All sorts of discrimination is possible.
I mean, I guess I could have created a, whaddyacallit, a pseudonym. Or an alias of some sort. I could have changed his name to something else to protect his privacy.
Jacque.
Jason.
Jim.
But his name is Jack. My son is Jack. He is eleven-almost-twelve, and he has autism.
And any way you look at it, autism is making history. Statistics are on the rise, gluten-free diets are under consideration, boots are worn every single day for three months.
For me, history begins with his story.
And when I lie awake at night staring at the ceiling, I don’t think about big important ideas like awareness and compassion and inclusion. I think about how to connect him with the world and the world with him in a way that makes both comfortable.
I spend about twenty-nine hours of my day reminding Jack to stop licking the counter and to sit for homework and to stop swearing and to get off of the computer already.
And the other sixteen hours I spend trying to convince him that he is fine the way he is—we all of us love him with his autism, and we think he’s one cool cat even if his boots stink like a litter box no one has changed in months.
There is no pseudonym for this.
The responsibility to tell our story feels, well, tremendous—like a thousand bricks sitting upon my shoulders. I want to be diplomatic, yet honest. Fair and authentic. I want you to be able to see and hear and taste our family and our autism for yourselves.
I had no real goals when I started writing, but as the blog has evolved and changed over the years I think, in some small way, it helps people put a face to autism–a face to the meltdowns and the anxiety and the delayed communication.
And maybe it helps put a face to a family living with autism; three other boys and one little girl who feel frustrated some days and peaceful others, who hope and breath and love right alongside this boy with fierce, boundless energy.
I am trying to tell you all the things he cannot say for himself; that his boots are stinky because his sneakers were small, that behind every tantrum lurks a mysterious inner torment, that he longs to be like everyone else in the world the way you or I want to be supermodels or millionaires or Oscar winners.
And if my telling his story of autism feels like a thousand bricks upon my shoulders, than him living the story of autism must feel like he is moving an entire brick house from place to place with his bare hands.
I am trying to tell you that he is every single thing I’ve ever wanted to be; brave and brilliant and interesting and strong.
Some days, it is hard to be his mother, but not for the reasons you might think. It’s not because he doesn’t sleep or because he reminded me ninety-six thousand four hundred times that he was planning to make the heart-shaped cake again for Valentine’s Day but this year he was going to use pink marshmallow frosting instead of pink buttercream frosting, but because it makes my heart ache to think how little anyone may ever know him.
I want you to understand him.
Because if you understand him a little bit, you’ll help keep him covered beneath the vast umbrella of awareness that we are all working so very hard to build, and shelter him from the judgment raining all around him like a brilliant, blinding sun shower.
And that is why, week after week, I offer our story to you like a tiny, imperfect pearl balanced in the palm of my hand. All I ask is that you love him like I do, protect him like I try, and maybe, one day give him a job.
Thank you.
February 15, 2016 @ 10:18 am
You and your family are an ispiration to so many of us…thank you…
February 15, 2016 @ 10:31 am
I feel like we are soul sisters and our boys are so similar. I could have written this very post. I just want the world to know my son the way I know him. He has so much to offer the world.
February 15, 2016 @ 10:37 am
We went to NYC for a few days at Christmas this year. Halfway through the trip my son was complaining about his shoes. We had to search for a store with the “right kind” of shoes in an unfamiliar city. He had grown 2 sizes! No wonder they hurt his feet, yet he did not tell me.
February 15, 2016 @ 11:11 am
yup! So much of what we see on the outside doesn’t reveal what is happening to our kids on the inside.
February 15, 2016 @ 11:39 am
Youre doing a great job!
February 15, 2016 @ 11:47 am
Thank you for helping to educate the world about our kids. You have a gift for putting your thoughts and feelings down so eloquently. I often tear up when reading your posts because it’s like someone has tapped into my head and written what I cannot always express. And because it helps me feel connected to someone living a similar life. Please don’t stop sharing.
February 15, 2016 @ 12:26 pm
You made me cry. Again.
I’m in the process of trying to figure out the causes of and the treatment of my daughter’s aggression and self injurious behaviors. Reading articles breaks my heart, so little is known because our kids can’t tells us. So, to be fair, I was crying before I read your beautiful blog post.
I came across this video awhile ago, not sure how I got there but it was good.
https://www.youtube.com/watch?v=JnylM1hI2jc
You’re a wonderful mom, even when you don’t feel like it.
February 15, 2016 @ 12:38 pm
Another wonderful post — thanks so much for sharing. I can understand your mixed feelings about sharing details about Jack’s life, yet it does increase understanding and empathy, I know it does.
I feel for you with the boot thing too. Once I got my son new sneakers because his old ones were getting too tight. But for the first 2 days he complained vehemently about the new ones every time he put them on. I assumed he was just objecting to the change, so I kept saying “No, you have to wear the new red ones.” It turned out there was a big wad of paper stuffed into one of the toes. Another one for the “mommy fail” list!
February 15, 2016 @ 12:49 pm
Thank you for writing, and I hope you’ll keep sharing the journey with us. Your blog has been very helpful to this grandma who takes care of her autistic grandson each week. He’s only four years old but I’m learning new things all the time. We do need to educate the world about these great kids who also cause us great concern for their future. You’re doing your part. I hope I’m doing mine.
February 15, 2016 @ 1:03 pm
Everything that you hope to accomplish in writing your blog, you accomplish each time I read it. You have opened my eyes, my heart and my understanding every single week. I have never viewed a person with autism in the same way after reading your blog.. and I was already one who worked with people with autism. I wasn’t unfamiliar. But you offer a perspective that resonates with my heart, as a person, as a parent, as a Mom.
Your blog, and your family, you, and most especially your son, are amazing.
February 15, 2016 @ 2:03 pm
Please keep writing your blog and sharing all of the details.
I see many similarities between Jack and my son (who is a few years younger). My son is 8 years old and has Autism. He is just starting to notice that the world sees him differently. Anxiety is really starting to become a daily struggle.
I see similarities between my own daughter (who is Jack’s age) and Jack’s siblings as they try to help their brother with autism –and how they have to adapt to autism’s often rigid ways.
And most of all, I can identify with so many of your thoughts and feelings as a mother of a child with autism. –Your fears about how your child will find his way in the world and how the world will respond to him. I appreciate that you not only share the struggles, but also the touching, beautiful and funny moments. Your honesty (and sharing ALL of the details — the good, the bad, and the messy) reminds me each week that I am not alone. Thank you!
February 15, 2016 @ 3:37 pm
For what it is worth, I think you are “diplomatic, yet honest. Fair and authentic” and we are “able to see and hear and taste” your family and your autism for ourselves. You, Jack and your family are inspiring.
February 15, 2016 @ 4:51 pm
I love Jack. And Joe, Rose, Charlie, Henry, and the dog. My grandson Noah is 8. On the scale. I want to respond to you every week. Noah goes to a school now “where everybody loves me at Oak Hill”. He is on meds. His anxiety is less. He talks more, sometimes you can’t understand him, but most times you can. These decisions were so hard for his parents. He loves his tablet. Mine craft. Zombies. He makes things out of discarded tubes and paper. A whole kitchen set. He can’t read yet but my daughter believes he will be an engineer. Or a garbage collector. When he is sad it breaks my heart. He has a 6 yr. Old brother. My daughter also believes he will live with her forever. I read your blog and I laugh and weep. Yes, I love Jack.
February 15, 2016 @ 5:31 pm
Your blog helps so many people understand him! There is so much that you write, that I can see happening or has happened with our precious son Jack! It’s comforting, heartbreaking and inspirational! Thank you.
February 15, 2016 @ 5:36 pm
The most absolute and well-put truth about autism:
“..that behind every tantrum lurks a mysterious inner torment, that he longs to be like everyone else in the world the way you or I want to be supermodels or millionaires or Oscar winners.”
February 15, 2016 @ 11:33 pm
You bring an awareness and “realness” to autism each and every week you hit that “publish” button. Sharing the good, the bad, and the ugly shows everyone what it is like to live with someone with autism. I know you must help so many each week that realizes they are not the only ones going through this scary journey.
I love all the “Jacks” and hope you help our society realize that maybe the “Jack’s” aren’t that different than anyone else.
Thanks for continuing to share your journey. You definitely have a gift!
February 16, 2016 @ 8:16 pm
You are a Warrior alongside Jack each and everyday….I am so incredibly grateful for you and Jack your family and what you share….I share it with my family and we embrace, understand and welcome you into our lives any day, anytime, always!
February 17, 2016 @ 11:40 am
I am also grateful for how you share about yourself–your feelings, both the upbeat, rah-rah and the hard honest ones when you admit that you aren’t one of those mythical always uber-patient, know all autism moms. It makes me feel normal.
I’m honored to ‘know’ you and Jack.
And wow, can you write…
I offer our story to you like a tiny, imperfect pearl balanced in the palm of my hand.
Thank YOU for sharing your story.
February 18, 2016 @ 6:31 am
Hi Carrie, i’m a bit on technology dinosaur but i found your blog whilst googling ASD one day, my son was diagnosed on the 26th May 2015 and i now find great solace in your weekly blog, it almost feels like we are part of your family ! I think you mentioned you have Irish heritage that explains the excellent writing 🙂 Keep up the good work !
February 20, 2016 @ 7:34 pm
Laugh, cry, …………bring it on, we can do this!!!
February 21, 2016 @ 8:26 pm
You truly are a fantastic writer! I am wondering if Jack would have an easier time expressing himself through keyboarding. Based on some of your recent posts, he seems to enjoy being creative on your computer. Maybe it would help him if he expressed himself through writing, starting with just a few sentences at a time. Perhaps, you could create a little corner on your website, such as “Jack’s corner.” He could post on Mondays and express what he enjoyed that week or what frustrated him. Alternatively, he could start out by keeping an electronic journal just for himself. It could be good practice. That way, you could teach him a little about expressing himself in writing, while at the same time learning from him about him. I have read phenomenal blogs by adults on the spectrum. Some of the authors are non-verbal. Several of the blogs are by writers who have become activists or artists. Blogging, of course, reaches so many different people, and has created a community in which people on the spectrum get an opportunity to really support each other. It is so very helpful to read about adults who grew up with sometimes extremely similar sensitivities and challenges as my own child, and it gives me a lot of hope to read that so many people have developed coping skills pertaining to certain challenges and have become proud of their strengths and of who they are.
April 8, 2016 @ 9:50 pm
Thank you so much for sharing your experiences. As a mom of an 8 year old boy similar to Jack, it is so helpful to hear the perspective of another mom. Small shoes aside, you seem like an amazing, patient and compassionate mother. Keep writing!