It’s Never About the Cup: An Honest Holiday Letter
Season’s greetings, friends and family!
I am happy to report the Cariello family had a wonderful 2018. My husband Joe and I are doing well, and all five kids are happy, healthy, and active.
We now have three teenage boys in the house. They eat like you can’t even imagine.
The other day I snapped at my 15-year old for eating an apple. That’s right, ladies and gentlemen, he was eating an apple and I got annoyed. It was an all-time parenting low for me, and I assure you, I have had plenty of parenting lows.
The thing is, I had already bought two dozen apples that week, and we were down to three, and I didn’t want to go back to the grocery store for what felt like the hundredth time.
Our daughter, Rose, is eleven. She is in sixth grade. She hates changing for gym class. I worry about her constantly.
Our youngest, Henry, is nine-almost-ten. He is wonderful! So spirited and full of life.
Actually, he can be a little, uh, bossy and lately he’s obsessed with Star Wars and the phrase “oppositional defiance disorder” has been bandied about, but I’ve pretty much ignored it because I am sick to death of labels.
As you may remember, our second son Jack has autism.
It’s going great! He’s making so much progress.
Actually, it’s not going that great.
There is not much progress.
He is obsessed with Mary Poppins and he won’t stop telling me he prefers Pepsi products over Coke and he talks to himself constantly.
If I’m being honest, lately I dread the afternoons when he’s home from school because it’s so hard to keep him busy. He basically wanders around the house while I drive my 13-year old to basketball and my oldest son to his stuff and try to get Henry to work on his math facts.
My 14-year old son has absolutely zero interests and this depresses me more than I can say.
There is no one to blame here, can you see that?
I have tried blaming him, believe me. I have tried telling him to stop talking about soda over and over and it doesn’t work.
I have tried blaming autism.
Nothing changes. Nothing is changing.
He is not getting any better.
Some days, it actually feels like he is getting worse.
We are running out of time.
It is a slow, gradual process, this spectrum disorder. It’s kind of like chipping through a glacier with your bare hands. It’s cold, and hard, and lonely.
I say he has autism about fifteen times a day.
I say it when we have an electrician to the house to fix the lights on the patio and he says hello to Jack and Jack doesn’t answer him or even pick up his head.
Oh, sorry. He has autism. Jack! Jack, say hello.
I say it to the server in Applebee’s when he asks Jack how he wants his burger-with-no-lettuce-or-tomato-or-pickle cooked and he says he wants it cooked on the stove.
Oh! He has autism. Jack, tell him you’d like it cooked medium.
I say it on the phone whenever I have to make an appointment for the eye doctor, or a new specialist, or a haircut.
I just want to let you know, he has autism.
I often ask myself how something so precious and reducible and diagnostic can be so complicated.
He has autism.
He is rigid.
He is literal.
He is very, very anxious.
He hates loud noises, and he uses self-stimulation, or stimming, to regulate his body. Once his body is regulated, he is better able to take in information and process it. This involves a lot of jumping.
I mean, that doesn’t seem so hard, right? Just let him keep his schedule and wear headphones when we see fireworks on the Fourth of July and give him room to move his body.
But it is. It is hard.
It’s hard because at the same time I give him room to move, I have to consider how to change him—how to help him learn to control the jumping and tolerate unexpected sound and be flexible if dinner is ten minutes later than usual.
It’s hard because his anxiety is so bad, interferes with his life so we have to give him medicine every night.
I know how most of you feel about long-term medication and children. I have sat around enough holiday tables and listened to the argument about how medicine is taking the easy way out and parents should just spend more time with their kids and all that jazz.
But, dear family, if you just lived with this child for twenty-four hours—one single day—you would see the way anxiety catches his breath like a fragile bird inside of a cage. I know you would change your mind. Like me, you would do anything to help free him from the ties that bind his spirit to the gilded bars of fear.
I guess the question is, do I help him fit into my world, or join him in his?
He loves Christmas. He knows Santa isn’t real but he says he believes anyway.
Anyway.
Lately it seems like my kitchen is never clean. Something is always sitting in the bottom of the sink—a knife smeared with peanut butter, a bowl with milk and Rice Krispies stuck around the rim, or a plate with last night’s leftovers crusted to the bottom. It drives me nuts.
I have caught myself screaming at my kids for something as benign as a cup left on the counter. And the whole time I am screaming, I am thinking about how much I love them and why am I screaming about this is so stupid I only have a few years left with these precious human beings.
Or do I?
Do I actually have a lifetime with autism and this tall boy of mine? Do I have a lifetime of peanut-butter knives in the sink and crumbs on the table?
I am overcome with love for them. I want to hug them until our breath is gone and remind them I am so proud of who they are and remind them to use their acne soap.
It’s never really about the cup, is it?
In this tangle of motherhood and teenagers and autism, it is about broken dreams and a conclusion to childhood and new hope and forgiveness.
I guess you could say my day contains a thousand little hurts, and countless surprises, and endless rays of sunshine contrasted against a cloudy backdrop of disappointment.
This is life.
Life is hard.
Life is complicated.
Life is good.
I think the answer is both. About the world thing. I have to do both. I have to fit him into mine and join him in his.
I have never liked jazz.
Wishing you a magical holiday season full of clean sinks, rays of sunshine, and as many apples as you can eat.
Love,
The Cariello Family
(Left to right: Jack, 14, Charlie, 13, Henry, 9, Rose, 11, Joey, 15)
December 10, 2018 @ 10:01 am
I’m laughing (“The Ousiders”), I’m nodding my head. Best Christmas letter ever! I’m very judgmental on those letters too??. Never been a fan. Always wanted to read an honest one?☺️. Love it, theater to it. Gorgeous children. Love “Roses” dress and necklace.
Molly
December 10, 2018 @ 1:20 pm
That picture! That’s awesome.
And thank you for the real letter!!! I too have yelled over someone eating a piece of fruit.
December 10, 2018 @ 2:05 pm
Those who are properly educated actually do not reject medication to control anxiety. The idea that medication is lazy parenting is an obsolete idea that reflects ignorance. Hence, I try not to worry about such comments. I may lecture somebody on the medical background of anxiety, or I may make a mental note not to socialize with them anymore.
In any case, Mary Poppins and Disney movies are great interests to have. At our house animated movies with a positive message are a great source of joy. If it brings joy and does not hurt anybody, why not embrace it?
Fandoms are actually a wonderful way to make friends. Especially among, but definitely not limited to, individuals on the spectrum, fandoms are a popular form of entertainment.
Fandoms could lead to writing fan fiction, creating fan clubs, going to conventions (comic con is a famous one, but there are many more), and gives a person something to talk about at school/work.
We are currently searching for a convention to attend (one that is related to my daughter’s fandoms). My husband and I want to take her because it would make her so happy and because she would encounter like-minded people and see that she is not alone.
I think life gets better when parents realize that someone on the spectrum should not be inadvertently or advertently isolated from peers who are also on the spectrum. Why not get a fan club going and invite peers who are also on the spectrum?
Also, there are teenagers on the spectrum who have blogs. It really helped my child gain insight and develop a sense of community when she started reading some of these blogs. I supervise her when she’s on the internet, and she has learned so much about herself, autism, and also internet safety.
The Facebook page, Parenting Autistic Children with Love and Acceptance, is a great site to ask autistic individuals for advice. In fact, my daughter even wrote a comment to give input when a neurotypical parent asked for advice regarding the first day of school for their young child.
Also, it may be hard to see sometimes, but our children are getting better each year. They are gradually learning to cope with an environment that is not made for someone who is not neurotypical. Just imagine your son at age 5 and 10 and compare that to now. There must be so many things that he has learned and that he can do now.
The human brain is amazing. We all keep learning and the brain continues to develop. The idea that all neuroplasticity stops at age 7 or 8 is obsolete and has long been debunked.
IMHO, one of the best ways to help our children develop coping skills and to help them grow is to get advice from autistic adults and to get our children to socialize with same-aged peers on the spectrum.
Creating an after-school club or friendship circle centered around a common interest (Disney movies?) may be a great way to get started. It is easy for our kids to get socially isolated, even in a midst of loving siblings.
Our children need their own peers and their interests should be embraced and supported by us just like one would support and celebrate the child who brings home sports trophies.
We embrace my child’s love for her various fandoms. I took her to see her favorite movie four times while it was in the theaters. We surprise her with fandom-related books, figurines, and other merchandise. We script with her and sing songs from the movies, and it gives her joy.
More importantly, it gives her hope for the future, which makes her laugh more, study more, and it actually helps alleviate anxiety. Last, but not least, it makes her realize that she is not broken. It is just that we neurotypicals lack the theory of mind to really understand and imagine how a person on the spectrum may perceive the world and how disabling our society actually can be.
December 10, 2018 @ 4:24 pm
What a beautiful picture and letter. Thank you for your ama omg blog
December 10, 2018 @ 7:18 pm
Such a great picture of your children Carrie! i can’t believe that i can still recognize them , although I see Joey daily at BHS! Rosie is still a beauty. I enjoy your blog so much! Merry Christmas to you and the family
December 12, 2018 @ 4:34 am
Merry Christmas to you and your beautiful family! It really helps reading this, we are a family of 4 not 5 children but everything else from starwars to teenage boys eating to much left me not feeling so alone in my thinking of them growing up.
December 12, 2018 @ 6:52 pm
Wishing you and your beautiful family a wonderful Christmas. They are growing up so fast. It is hard to believe how long I have been following your blog. God has been good to you in so many ways. The love you show everyday to your whole family is a special gift not everyone has. The ability to write from your heart and soul to all of us is the gift we receive from you. I pray you have a better 2019 and continue to do what you do to help all of us and especially Jack. God Bless.
December 16, 2018 @ 4:32 pm
I was told once that my daughter was disabled because I over mothered her. I’ve never talked to those people again.
It’s hard and it’s endless and it’s also so good when the good does happen. My daughter is doing much better on a new medication and I am thankful. Her anxiety has gone down so much it’s unbelievable. She still has a few problems but night and day difference.
This is going to sound awful but I’m so thankful that you yell at your children. You seem like an awesome mom but it helps me so much to know that you yell too. I did my fair share of yelling at my kids when they were younger and I wish I could take it back. I was by myself a lot of the time with three kids, two with high needs. I did my best but I wish I hadn’t yelled so much. All I remember about them growing up is being tired, all the time.
You will all survive. Jack will be Jack and there will be a place for him the world. He is loved, that’s the most important thing.
December 17, 2018 @ 11:21 am
Beautiful children.