To My Youngest, The Sibling Of A Special Needs Child: This Is What I Need You To Know

by Kate Swenson
Kate Swenson

My little peanut,

Today is your 4th birthday, Sawyer. How can that be? I look at you running and jumping with your friends, and it’s hard for me not to cry. You are amazing. I am so proud to be your mom. I need you to know that.

I want to tell you a few things. I know you won’t understand them now, and that’s okay. But someday, when Mom is old and gray, I want you to read this letter.

I want you to know I am so unbelievably thankful that you are my son and Cooper’s brother. You need to know that. Together, the two of you have given me more joy than I ever thought was possible.

I have a secret. No one knows this. I cried the day I found out I was pregnant with you. Actual ugly tears, bud. I have never been more afraid in my whole entire life.

Your brother was 2, and I was failing as his mother. I couldn’t fix him. I was chasing doctors and therapies and coming up short. I felt like I was failing as a wife, a friend, an employee, and a mother. My world was crashing down around me.

Autism was right around the corner. Severe, nonverbal autism. The scary kind. The kind no one talked about.

I lived every single day with a dreadful feeling in my stomach. I knew the bottom was going to fall out of the perfect life I fantasized about. I could feel it happening. It was only a matter of time until we had a diagnosis.

But I was faking it and making it, pal. I kept the perception up. And then I found out you were coming. It was a Saturday morning. I’d been awake all night with your brother. Your dad was at work. And I had a hunch. I peed on a stick, and the thing practically screamed, “You are pregnant!”

I was so scared, buddy. I hadn’t slept in two years. My world revolved completely around your brother. Much as it does now. Not a lot has changed in that department. Hell, I think the first year of your life, I nursed you in every waiting room in Duluth.

For the next nine months, I would lay awake at night, googling “odds of having two children with autism,” when I should have been catching up on precious sleep.

I was so scared.

Then it was January, and you were here. And oh my God, baby boy, you were perfect. You slept. You ate. You laughed. You were content.

I want to tell you a secret.

You saved me, buddy. I want you to know that. Not a lot of kids can say they saved their mom.

By the time you were born, my world was 100% autism and overtaken by my fierce need to help your brother. I was running myself absolutely ragged chasing therapies and help. And while that is what a mother should be doing, it was slowly taking over my entire world. I was missing all the joy of motherhood. I was simply surviving.

You reminded me that I needed to live life with my babies. You brought our family back to reality.

On the days when autism had me down, on the days when my heartbreak over your brother’s disability was more than I could handle, you were there. Laughing and smiling. Learning to crawl, walk, jump, and speak. Inserting yourself into your brother’s world too. You could always do it in a way that I never could.

You gave me all the milestones and memories that a mother should have.

And on the other hand, watching you pass your older brother cognitively, socially, emotionally, and physically has been crushing. You are my little reminder of what your brother isn’t. There are days where I miss your brother so much I can’t stand it.

I think of the all times we almost downplayed your development because your brother learned to use a straw or point to his nose. Such simple things. We never meant to do that, buddy. We just knew you were fine. You were thriving. Your brother wasn’t.

I want to say I am so sorry. You were born into this. Having a brother with severe special needs has to be frustrating. There are days when the only interaction you have with him is a kick in the face.

Autism is such a mystery to you. I can see it in your face. There are days where you will look at your brother and ask him a question, and he will squeal in delight. Those are the good moments. And I know they are few and far between.

I want to say I am sorry that this is happening. You are the most social kid that I know. You come to me to meet those needs because your brother ignores you. You demand me to play with you.

Part of me wishes you didn’t know the word “autism.” And then a part of me is thankful that you know hard times. That you know sadness and disabilities and differences. I feel like it’s almost a gift your brother has given to us. You know struggles, kiddo.

I feel like I’ve missed so much of your life.

Last month, I forgot the year you were born. We were at the doctor having your well-child visit and the receptionist asked me your birthdate. I said January 20. And she said, “Year?” I just stared at her. I looked at you. I looked at her. And I burst into tears. I truly didn’t know the year you were born.

Your daddy giggled about my forgetful brain and attributed it to lack of sleep.

I think of the times I shushed your beautiful chatter and nonstop questions because I had been listening to your brother scream for hours.

What kind of mother does that? But I know that you will understand. You will be quiet. Your brother won’t.

The other day you grabbed my face during a social worker visit and looked right into my eyes and said, “Can we talk about Sawyer for a little bit, Mama?” I will never forget the way you held my face with both of your chubby hands and asked so sweetly, Sawyer. And I told you we would after the social worker left. We would talk about Sawyer. Only we didn’t because your brother needed me.

I want you to know I am so sorry for that moment that you will never remember.

I want to thank you, sweet boy. Our life is hard. It is even scary sometimes. It’s exhausting. And you get the leftover shreds of a mother after autism is done. And I am sorry.

Some days, I think I am creating a monster because I spoil you so terribly. You see your brother doing so many things that you can’t. So I give in to you all the time. I hold you and coddle you. I let you stay up later at night so we can have a few minutes without autism.

I am so sorry that, five times a day, I say to you “…because he’s autistic.” There are days when I swear I’ve failed you. Or the times I told you that you had to walk because I had to carry your brother. It started when you were 2. Your brother was 4. You would scream at my feet with those little arms in the air, and your brother would kick at you from my arms. We would be in the midst of autism meltdown so fierce that I would have to walk and hope that you would follow.

Those moments are burned in my brain, buddy. Oh, the guilt.

There are moments when I will look at you and wonder if you will take care of your brother after I am gone. Will you love him like I do? Will you shave his face? Will you dress him? Will you change his diaper if needed? Will he live with you?

How can I ask you that? I want you to go to college, get married, have babies. But part of me has this favor to ask of you. I need you to love your brother after I am gone. I need you to protect him, and while I don’t know what that looks like yet, I just need to say it out loud.

My worry about your brother’s future is unbelievable.

Someday, Mommy and Daddy need to talk to you about the future. But not today.

Today you are 4, sweet boy, and we are celebrating everything that is you. Today, autism is not the priority.

I am watching you play and thinking about all the things I want to teach you.

I want to teach you kindness, love, and patience. I want to teach you that disabilities are not scary. I want you to fight for what is right. I want you to fight for your brother.

But most of all, I want you to be happy doing whatever it is you want to do and to have no animosity against your brother. I want you to accept your brother and love him and truly see all the joy he brings to our lives. I want you to be brothers in every essence of the word, honey.