Will My Autistic Son Understand When I am Gone?

I went to a funeral yesterday. It seems as I get older, and my family gets older, I am attending more and more funerals. I guess that’s the nature of growing older.

Thankfully, if there can be a thankfully, they are funerals for beautiful souls that have lived long, wonderful lives. So, more of a celebration of life I guess.

My Son

As I sat there yesterday, I looked around and saw many faces I knew and many I didn’t. Ages ranged from babies to nineties.

I found myself staring forward at a little girl who was looking back at me. Her dad was holding her. She had long brown hair, up in pigtails, with pink ribbons.

Her dad held her the whole entire time and I didn’t hear a peep out of her. Every so often she smiled at me. And I smiled back.

My mind immediately went to Cooper.

It always does. In moments of extreme joy and sadness, I always think of Cooper. And autism. My son. My baby.

I immediately pictured him as a man with the same vulnerability and innocence he has now.

Some of you are probably wondering why I don’t worry about Sawyer, my four-year-old. A few reasons I guess.

Sawyer is My Rock

My thriving, beautiful, smart, typical-in-every-way, son. Sawyer is going to take the world by storm. When I think about his future I see so much joy. I see freedom of choice. I see independence. I see determination. And, I see a boy without severe, nonverbal autism. I see friends, sports, college, jobs, marriage, babies. It’s all there.

And let’s just say one of those things doesn’t happen. Say, he chooses not to go to college. Or he chooses not to get married or have kids. It doesn’t matter friends. Sawyer is his own person. He is going to pave his own path. He is going to make it. He is going to struggle and thrive. He is going to live his life the way he wants too.

And never once do I think of his future with fear or worry.

Instead, I think of my son Cooper. He is seven. He has severe autism. People want me to say his future is unknown. And yes, I guess that is true. But that’s not the reality of it. Cooper is unable to care for himself. He is unable to recognize danger. We are doing every thing we can to prepare him for life. Therapy after therapy. We aren’t giving up either.

Preparing for Forever

And in the meantime, we are preparing for a life where he will be with us for forever. We will pay for his needs. We will be his voice. We will keep him safe. We will make sure he is happy and thriving.

As I stared at that little girl I let the one thought creep into my mind that no mother should have to ever think of.

Will my autistic son understand my death?

With Amazing Grace in the background, I let myself jump down the rabbit hole of special needs parenting worry.

Will Cooper be able to go to my funeral? His own mother’s funeral? Or will he be kept home because he can’t sit or stop stimming?

Will he understand that I am gone? Or, instead, will I just disappear one day? Will he wait for me? Like he does every single day of his life? I am his person. I am his world. Will he say ‘I want mom’ repeatedly with his speech device?

Hopefully, I will be in my eighties and Cooper will be in his fifties. And, even then, will this delayed, vulnerable, innocent boy know his mother is gone?

The tears started streaming down my face. I could feel it coming on before it started. The thoughts. The fears. The worries that no one outside of this world will ever understand.

Who Will Care for Cooper?

Who will steal a kiss every single time he runs by? Who will wipe his face, nose and bottom? Who will check his body for bumps and bruises? Who will tickle him and tuck him in and check on him?

I don’t care if he’s 7 or 60. Even though he will look like a man, Cooper will still be a little boy. And, his disability and vulnerability may not be as beautiful as it is now.

Someday, to someone, he may be a burden. Wiping his bottom may be gross to someone. His hums, flapping and squeals won’t be smiled at. His obsessive, quirky behaviors won’t bring a giggle and a hug from mom.

Who will smile at every single train? And understand every noise?

My son has never been a burden to me. Not once. Not even during all the hardest parts of autism, the anxiety, the sleepless nights and the behaviors.  Keeping him safe, advocating, fighting, and loving him all came from this place deep inside of me. He is my world.

But someday, I won’t be in this world anymore.

Part of me wonders if Cooper should die a day before me.

Can I say that? Am I allowed too? I want my baby to live a long, healthy happy life. Obviously, that’s what every mother wants.

But, can he live without me and his father?

I Am His Person

I can never leave him friends. I am his person. And he is mine. It is my job, duty, and purpose to keep this little boy safe.

As I drove home, I thought about wills, trusts, and guardianship. I can do everything in my power while I am alive to prepare for his future.

But part of me has this feeling that my son won’t understand when I am gone. I just feel it deep inside of me. And there is something so unbelievably sad about that. He will think I abandoned him. The person that I have devoted my life to helping.

It all weighed heavy on my heart.

I can’t leave him. And yet, I know one day I will. I have to trust the world. I have to trust the system. I have to trust that we will have it all figured out by then. That’s all I can do.

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 and subscribe to our newsletter.