At Least She’s Healthy

beautiful-931152_1280

When your son was diagnosed with cancer my daughter had long been diagnosed with autism. 

They were in the two’s together and every day my little girl showed up with a Birth to Three therapist. I’m sure you saw us.

She was the only one who needed a therapist to get through the day. To put a cup to her lips and push her chin up.

The girl who had meltdowns and ran down the hall spinning, tumbling laughing maniacally.

I remember when I heard about your son.

I went to all the prayer services with my girl running up and down the aisle, screeching, stimming, whining and scripting.

The whole time wondering if we should leave. No, I thought.

We would pray for your son.

My daughter mentioned your son at home and I wanted her to join me and think of her friend even though she was way too little and disruptive.

It obviously meant a lot to me.

I remember thinking how unfair it was.

For your son and for my daughter.

Why do little children have to suffer?

I thought of them the same. I thought of cancer the same as autism.

I was grieving my news too. I was in pain too.

I never thought that your son would not fight the cancer. I saw for him a long recovery which might entail the same therapies as for a parent like me of a child with a disability. 

I never thought of him as any different than my daughter. We all thought of him often and it seemed like everyone had your sweet boy in their thoughts.

Cancer and autism in an innocent way somehow just meant the same to me.

We were parents and our kids were sick.

I was lost during that time. The whole world seemed to crash on me over and over every day.

I was grieving my daughter’s diagnosis.

As I was drowning, I began to notice how much love your boy got because he deserves so much of it.

This outpouring of love free from judgement from every parent from his class.

The parents I joined to pray for your son didn’t stare awkwardly at me or my daughter anymore.

It was the first time they spoke to us and about your son. 

When I saw this happen I felt so happy and angry too. And this angry feeling built and I realized I would never be able to share this resentment.

This terrible thought. I couldn’t even bring it up to my husband.

Why did everyone come together for you and your son and not my child too? 

Why was she pushed aside by stares? How come no one ever asked me how I was handling my daughter’s diagnosis?

How I was going to live with this life altering diagnosis?

How did I have time to prepare dinner and take care of my infant and my autistic child.

Her hand is just as little as your son’s hand. Her feet are just as sweet and both of our children deserve to be loved by our community.

Her smile is sweet like his. Have you seen it light up the room? 

How was I coping? How was I sleeping? Did I need anything?

We continued to support your family and I was relieved to hear through the gossip that your son was improving. I was happy for your family and it rekindled hope for my daughter too. 

When she graduated Birth-Three on her third birthday I bought many balloons. I bought a huge cake.

I was so proud of her and felt so guilty she had spent the past year in so much therapy. I would celebrate this day like no other.

Autism was behind us. It was gone. They came and fixed her and left.

I ignored any stimming, I ignored any signs of reality. I wanted to forget about autism for just one day.

I had put away those disgusting thoughts of feeling upset.

And then on our way to celebrate her birthday I received an e-mail from the Director of this private preschool and she wrote that they could not have my daughter back to their after school program without an ABA therapist there for her.

That she required too much attention and she asked what progress I had made finding an ABA therapist for her.

Mind you, this news was too soon for me. I was too naïve at that time.

I was new to autism I was still grieving. I didn’t realize yet the problems that lay ahead.

I wrote a letter that night sobbing.

I wrote it with steam coming out of my ears. I wanted to ask why she never asked about my daughter or me.

Why they became annoyed with my child because she had autism but if her disability were caused by something else- say major surgery or a physical disability- they would be more understanding.

Why were they not more understanding toward us? Why were we just a disruption. 

I wrote this e-mail. Full of sadness and full of hate all these emotions that were never there when I first found out about your boy.

I don’t really feel this way. It’s not who I am. I guess I was just terrified and I had no one to speak to because it was autism and not cancer and things could be so much worse. 

Well, can I tell you? 

Autism is hard and it is very, very sad.

I wish I could talk about it, too. Like you can with cancer but I know that it doesn’t matter “because at least she is healthy.” 

I don’t know what I would do if one my children had cancer and I didn’t know what to do when she was diagnosed with autism. But I don’t think of my children with autism as healthy.

I never sent that letter. I learned later that your son now goes to the same public special education program as my daughter.

I think of your son and I think of my daughter and I hope that they play together at recess and I hope that they smile and laugh. 

They are just children and each and every one of them deserves to be loved and included. 

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

Avatar photo

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

Share this post: