Dear Mom, I Read Your Letter Today

A few days ago I shared a letter I wrote for my son Sawyer. You can read it HERE.  It was a toughie to share. It was brutally honest. It was real. And I really put myself out there. I purged every ounce of worry and self-doubt that I have about raising an autistic child alongside a typical child.

Let’s get something straight.

Cooper is an amazing little boy. He is funny and sweet and brings more joy than I can put into words. But…it’s different for me. I am his mother. He came from me. I am here on this earth to care for him. And I am 33 years old. I got some age and wisdom behind me.  I can accept the challenges that our life offers more than a four year old. Or a 10 year old. Or a teenager.

As I sat and read the comments on my letter I started to spiral…’you love Sawyer more.’ ‘I feel bad for both of your sons.’ ‘You don’t love Cooper.’

I had failed.

I thought long and hard about it. Was I wrong to worry about Sawyer resenting his brother?

 

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Quite possibly I guess. I’m not expert in child development.

And then it hit me.

I am not a sibling to a child with special needs (nor were the commenters). I am simply the mother. And what the hell do I know about growing up with an autistic sibling.

I had meant to help others by writing that letter. That was my only objective. Despite the thousands of amazing comments I worried that I had failed.

Then this letter showed up in my inbox. It was written to me as if it was from Sawyer. The author’s name is Kara Dymond. And it changed my life and outlook on everything. Just like that. I was saved again by a stranger.

Grab your tissues friends.


Dear Mom,

I read your letter today.

You should know that the person I am today is because of you, and because of my brother.

Know that I never resented the focus on him. Not really. I watched, and learned, what it means to love someone. To nurture them. To not only care for him, but to allow him to care for us. Not in the traditional sense, but in his way. Love is not a spoken language. He makes me laugh, deep belly laughs, and smile till the creases in my face hurt. He is pure, and the euphoria we feel when he is happy and with each small step forward is unlike any other joy. Being with him simplifies life to what really matters. Cynicism and self-absorption fade away. We experience life in full color. Those are the times that make the grief, the stress, the anger at the world’s injustice seem unimportant, if only for a while.

And those times you spoiled me? These helped me to learn to appreciate the sweet moments, and to take nothing for granted. That the chaos of life is tempered by levity.

You wondered how I would feel about my brother, now, as an adult. You never had to tell me what my role would be; I knew. There was no doubt. As I grow older, and you grow older, I worry too about outliving my brother, just as you do. He factors into my every decision. But it is not a sacrifice.

My best qualities are inextricably linked to my brother. I have an empathy and interest in others I would not have, without him. I understand the difference between treating someone equitably and treating someone equally. You taught me this.

In a way you could say my brother keeps me out of trouble. I don’t waste time on the wrong people. I have a list of qualities I look for in a partner because I am looking out for someone who will love us both. This may also seem like a sacrifice but it is not. I want a partner who sees the innate value in others, and who can move beyond fear to meeting him where he is.

He is a gift. He is the reason I now teach children with autism. When I was offered the job, I wondered if it was a good idea. Would it be too hard to work all day, sharing in the pain and joys of other families, to come home to ours? But then I realized: would anyone else love these students the way I do? Six years on, I have no regrets. And I want to change the world for my students. Which is why I am now getting my doctorate in autism education. Because the world is changing and everything he has taught me can be passed along to others. Because he really is the greater teacher.

I know there is a grief so deep in you that it is hard to get out of bed sometimes. But we are so much more whole than we would be without him. There is lightness that permeates the darkness.

He may not say it, and I definitely don’t say it enough, but thank you. I love you, for all that you have done. I am happy to help. I am grateful to help. I have been preparing for this for as long as I can remember.

Don’t worry, Mom, I got this. I got you.

Love, Kara


As I sit here and read this letter over and over again the tears are streaming down my face. Like the broken record I am I can say that I had a long night. I am exhausted.

Today I am feeling the strains of  motherhood…not just autism.

And then I read this letter from Kara and a feeling of calm washed over me.

This is going to be OK. We are all going to be OK. We are raising amazing kids. Some with disabilities and some without. We are teaching them love and kindness and we are ALL doing an amazing job.

I reached out to Kara and thanked her immensely for her words. I also asked her to tell me more about her brother and their relationship. It’s pretty great stuff. She is an absolutely amazing woman. She is making a difference at home and in the world. I can’t even imagine how proud her mother is of her!

Danny

My brother Danny is soon to be 29, and I am a few years older. We have two other older siblings. My sister now writes Autism policy for the province of Ontario, and like I mentioned, I teach students with autism and am getting my PhD focusing on supporting teacher development in the area, so D’s impact on all of us has been very apparent.

We are the closest, in age and in friendship.

Danny has autism, developmental delays, and acute social anxiety disorder. He was very late to speak, hid under chairs at preschool and I don’t know if he ever spoke at school. He speaks with immediate family, and is actually hilarious (mimes as if he was different characters sometimes, is the pun master) but withdraws around others.

He is incredible at video games, and now writes his own ideas for story lines, character descriptions etc. He has extreme intelligence in some domains and he struggles to function with many elements of daily living. Great with routines, once he has learned them, and predictability and all the rest. He lives with my parents, and stays with me at certain parts of the year so they can get a break/vacation, and because he needs one too!

He goes to a day program that teaches life skills and gets him volunteering stocking shelves a few days a week, and he has a job shredding office documents at my dad’s office. He is usually pretty happy though like all of us has his days where he is overwhelmed by his feelings and can’t understand why everything is so much more difficult for him. A lot of trouble identifying and expressing feelings and their cause.

A few years ago he patted me on the arm and said I was a very nice sister. It was the best compliment I have ever received.

Danny also adores my boyfriend, who once said, without knowing it has always been my plan, that Danny should live with us one day. My heart burst.

 

A Letter to My Other Son…The Sibling to A Special Needs Child

My little peanut,

Today is your fourth birthday bud. 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 OK. But someday, when mom is old and grey, 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 two 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 Coops. 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 2 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 9 months I would lay awake at night when I should have been catching precious sleep googling ‘odds of having two children with autism’.

I was so scared Sawyer.

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.

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Photo Credit: Melanie Houle Gunderson

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 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 Cooper’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 Cooper 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 Cooper 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 Cooper 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 Cooper has given to us. You know struggles kiddo.

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Photo Credit: Kacie K Photography

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 birth date. 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 into 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 5 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 Cooper’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 Cooper 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.

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Photo Credit: Kacie K Photography