Different and the Same
Dear Jack,
So, it looks like we decided to keep you in public school. I’d like to say it was because of things like class sizes and state-funded services, but mostly it was because we don’t exactly have ninety million extra smackaroos to throw at your education.
You are happy about this, I know. You don’t want to switch schools. Actually, based on what you told us, you don’t want to go to school at all except on Thursdays when you can buy ice cream for a dollar from the Snack Shop.
When we first started thinking about changing schools, I was curious about how many kids were in each classroom and what kind of sensory equipment was available and if the curriculum met your mysterious academic needs.
Yet when I really think about why I wanted to look into another school, I would have to admit that somewhere deep down inside of me, I wanted to find a place that is chock full of Jack-a-boos like yourself, so you wouldn’t be different all the time.
I know, I know, we put different way up on a big shiny pedestal. We shout about how we love it and chant mantras about how much we appreciate it and the world would be much more even better-er if we accepted we are all different different different.
And I love your differentness. I really do. I love the way you can remember unusual facts and how you listen to Christmas music before you go to bed every night and I especially love your new recipe for pancakes.
But in the midst of all this chanting and cheering and celebrating, I think I forgot what it must feel like to be different. Because some days, Jack, I think you would very much like to be the same.
Unfortunately, in public school, there’s a good chance you will never be the same; you will always be a boy who needs a one-to-one aide, who doesn’t take a foreign language, who stims and jumps in the Snack Shop line.
This makes my heart squeeze tightly, like a fist around a small, hard rock. It makes me sad.
My heart aches because I watch you and I see the way you wear your differentness like a tight wool sweater. It itches you. It irritates you. Yet it’s like a second skin you can never, ever take off.
I am sad for another reason.
See, I myself have spent an awful lot of time over the past ten years pointing out the things about you that are different. I’ve pointed them out to doctors, to teachers, and to my sister—to our neighbor, the librarian, and the cashier in the grocery store.
He doesn’t look at me like my other son does.
He doesn’t have as many words as kids his age.
He’s just, I don’t know, different somehow.
I realize now that maybe this was a mistake. I think maybe hearing about all the ways you are different took its toll on your spirit, your self-awareness—your very perception of you are.
Just the other day you asked about another kiddo in school who has autism.
He doesn’t talk. I TALK. How for me and him to have it together?
She has autism but for her she has no aide.
I am for like no one.
Lately, I can tell you’re trying to hard to find your own footing on life’s slippery ladder, only instead of low to high, your ladder is balanced across a wide precipice that stretches between the land of the haves and the have-nots—those who have an autism diagnosis neatly spelled out in black ink on white paper, and those who have no paper at all.
I don’t know how to fix this for you, because I don’t know another single person like you in the entire world. But instead of pointing out any more differences, I thought maybe I could show you some ways in which you are the same.
You have the exact same blue eyes as your sister Rose.
You have the same color hair as your brother Joey, and the same expression as Daddy when you’re mad—you both squish your eyebrows together and it makes your eyes very small.
Big crowds of people make me nervous too, Jack. They make my heart race, and I feel like I can’t get enough air inside my lungs. I prefer quiet.
We both love the song Heaven Knows by Donna Summer.
We both love hot showers.
We both love cupcakes.
Your 10-year old brother Charlie also hates math, and like you, he has the hardest time with word problems.
Rose went to speech therapy when she was in first grade.
Joey went to occupational therapy when he was in third grade.
I also had to wear an eye patch because I had a lazy eye.
I wore it to kindergarten, and every day I cried and cried because I hated it. I hated being the only kid in my class who had one and I hated the way it stuck to my skin and I hated how, for two hours a day, the world turned blurry and fuzzy around me like someone had smudged it with an eraser. I especially hated the way my hot, spicy tears would collect in the bottom of the flesh-colored oval like a puddle after a thunderstorm.
We both hate thunderstorms.
Your little brother Henry loves Scooby Doo, but the two of you think Legos are boring.
When it comes to school, you will follow the same academic trajectory as your oldest brother, and your younger brothers and sister will trail behind you like tiny stars in a familial meteor shower.
This is not going to be easy, I know, but with a lot of prayers and tears and work, I will do everything I can to make sure you cross the stage with a diploma in your hand and a cap on your head.
Jack, you’re what someone might call an underdog. I know that word will probably make you giggle because you’re picturing a person sitting underneath a puppy, but it really means a less powerful person or thing struggling against a more powerful person or thing.
You are a person who is struggling against autism. And sometimes, it seems so strong—like a gust of wind that might blow you right over.
On the worst of days—days when you feel prickly and itchy and the world around you seems blurry and out of focus, remember one thing: you are never struggling alone.
Yes, Jack, parts of you are different. And parts of you are the same. You are innocence and surprise and mystery and light. You are here and now and forever powerful.
Last week I had to go to your school for a meeting to talk about your academic needs. I weaved my way down the long hallway and paid close attention to the signs that said Polite and to the Right! Looking around me, I felt exactly like I was in middle school all over again. I felt uncertain and unsure.
I found the conference on the first floor and I was out of breath because I was a few minutes late. Like you, I don’t like to be late.
When I walked into the room, I still wasn’t one million percent convinced we should keep you in this school. I wasn’t positive that the class was small enough or the curriculum was could meet your needs or you would be able to make a friend.
We were in there for over an hour. We talked about how long you should sit for math and how many sensory breaks you need and whether or not you should start your homework at school.
We talked about how you play with other kids at recess, and if you sit with friends during lunch, and whether or not you have a hard time changing into your gym clothes in a locker room full of loud, boisterous boys.
In a way, we were trying to figure out one long word problem; a complicated algorithm of social needs and academic requirements and autism. This felt hard and it made my head hurt.
But when I walked out of the room ninety minutes later, I had my answer. Jack, it turns out it has nothing to do with class sizes and student-teacher ratios or how many smackaroos a private school would cost. It has nothing to do with whether you are different or the same. The answer was one simple sentence.
“Carrie, we will never give up on him. I know we can teach him.”

December 14, 2015 @ 1:14 pm
Carrie – it is really amazing how you can write a blog at just the right time to give me another perspective, from one mom of a child with autism to another. It’s amazing how similar, and yet of course unique, our sons are and it seems they are venturing down the same paths at the same time. We too are looking at another possible school for our son. He will transition to the 6th grade in fall of 16/17 and physically, another building in our public school district. We are entertaining/investigating a charter school in our system that focuses on children with autism. Mark is very curious and wants to go see the school. Im trying to gauge if this is simple curiosity or if he really does not want to continue in our public school system. We have a visit scheduled for after the new year.
December 14, 2015 @ 3:48 pm
Beautifully written! I felt everything you were saying!
December 14, 2015 @ 4:45 pm
Carrie – I always enjoy reading your blog and it takes me back to when John was much younger. At 36, he still feels “different”, mostly in a good way. Until it comes to having a girlfriend, as he watches all of his friends get married and have children of their own. These are things I can not help him with – it is painful to watch him struggle with things he has no control over. You have such a wonderful way of looking at Jack and his “differences”! I cannot imagine having more than one child and dealing with autism at the same time. However, Jack appears to be very lucky to have wonderful siblings that are supportive of him. By the way, John did go to another school for three years but we found that he was different from the kids there, as well. I have learned to accept that he is in his own category and the unique, intelligent, compassionate person he is will always be fine with me. One thing I have found helpful with John is to make a list of all of the positive things in his life and then one of the not so positive things. It is a clear way for him to see that the scale tips to the positive side every time. Keep writing and giving other families insight into the world of autism.
December 14, 2015 @ 10:04 pm
Exactly.
December 14, 2015 @ 10:55 pm
I got done reading this and had one comment – awesome. Simply awesome. My daughter is 26 and has Down Syndrome. She is out of school now, but we struggled with many of the same issues you write about. She had many great paraprofessionals who are still a part of her life. The journey can be difficult, but so worthwhile. I love reading your blog. Love the picture!
December 15, 2015 @ 10:17 am
I was at the end of my rope this year with my son. Until one teacher said. “I can teach him”.
And she has like nobody else could. It helps knowing someone else cares about your son and you are not doing it all alone.
December 15, 2015 @ 9:29 pm
Thank you. xxx
December 29, 2015 @ 8:50 am
I come from the perspective of a teacher. I like to think that I am more sensitive to both my students’ and their family’s needs simply because I have a brother with special challenges, but this reminds me again of the uniqueness of every single situation, whether the special needs have been identified or not.
December 30, 2015 @ 11:28 am
Carrie- You are making the right decision to keep Jack in public school. In my experience, public school offers more services than private and you son will model after the other kids that are not on the spectrum. He will do fine. There will be challenges as all children face in middle school, but those challenges will give your son experiences that will prepare him for the bigger world out there.
When my Andrew was in middle school he was bullied by one of his grammar school friends in the locker room. This boy would mess with the hood on my son’s sweatshirt repeatedly until one day my son had had enough. My Andrew had training in Taekwondo and found a way to trip this boy when he was charging at him. After that embarrassing moment, Andrew was left alone. He was able find a few very close friends to hang with that loved video games too and made it through junior high.
Now my son is in college. He found his way by doing what he loves, singing. this is where he “found his voice”.
I hope your Jack finds something he loves and connects with it and the people around it. It will change his life.
Keep on loving him like you do and never give up hope that he will live a happy life. And don’t forget to take care of you.
Happy New Year.
Teri:)