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?
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.
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.
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!
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.