Saying Goodbye to Grandma When You Have Autism

Recently, we had to say goodbye to my children’s Grandma as she passed away. This necessitated our being out of town for a week and a half. There were changes in schedules, new experiences and other things that tend to throw someone with Autism off their game.

Grief and Autism

How often do you let our true feelings show through? How often do we do what society expects of us and smile? My son with Autism who has difficulty with expressive language taught me a lesson that day. He struggles to express himself, but just like you and me, he has all the same feelings, experiences the same grief.

Our son did amazingly well. The secret to his success? Almost unlimited access to food and screen time. Normally that isn’t allowed in our home. He will abuse the opportunity every chance he gets. But knowing that everyone was emotionally on edge we decided the path of least resistance was the best option for everyone. We didn’t need Autism meltdowns happening along with the grief everyone was experiencing.

In my brain, as I mentally overanalyzed the situation, I imagined that the extended family surrounding us, not knowing how Daniel’s brain and heart work thought he was unaffected by the loss of his Grandma. Probably I thought, they wondered what the big deal is about his behaviors as he really did have excellent behavior for the time we were there.

At the funeral, he asked me to take two pictures of him.

And then, because it’s what you do when you take a picture, he had me take another one and smiled.

I usually don’t spend a lot of time thinking about what other people must be thinking about us. Those looks in the grocery store line? I’m oblivious. I just want to get out of there with my children, the service dog, and groceries and get home. I’m too busy to care, but these were extenuating circumstances.

This was the first time my son has dealt with the loss of a loved one. There was no crying going on with my son regarding his Grandma. There was (at least at that time), no lashing out in anger and confusion. He loved his Grandma and had fond memories of her.  But where was the emotion?

Having Autism, for him, often means he has difficulty with expressive language. This is part of why he isn’t interested in talking to Psychologists. He doesn’t like talking about how he feels. He struggles to have words to express feelings. His skills in this area are growing with age, and because of that growth, there were two times during this trip that gave us a glimpse into what he was thinking.

Both times happened to come the evening of the Viewing.

My Husband took him up to the coffin to say goodbye to his Grandma. I didn’t see or hear it but he later related to me what took place. Our son looked down on his Grandma and said, “I feel like I’m going to cry, ” and he walked away. For him to express that was huge. Knowing that he didn’t want to cry he left the vicinity.

Later that night as he and I were driving back to the place we were staying, he suddenly said from the quiet of the back seat, “We’re coming back here right? I can’t imagine a life where we don’t come back here to visit.”

My Father-in-Law died when my son was just a month old. While there is family there, there are no longer Grandparents that will pull us back to visit with the same frequency. I couldn’t tell him when or if we would be back. What he didn’t understand yet, was that when we did come back, things wouldn’t be the same. Grandma’s house would no longer be hers, filled to the brim with goodies, fun things and a Grandma to love him. His world was changing in a way he didn’t understand.

Grief with Autism looks a little different. But it doesn’t mean it isn’t there.

12 thoughts on “Saying Goodbye to Grandma When You Have Autism

  1. Hi Calleen, What a handsome boy. Thank you for sharing a glimpse into your beautifully complex family life. I’ve prayed for you all, for your comfort and joy in such a hard season–which just happens to be at Christmastime. 🙂

  2. I am so sorry for your loss, but what is wonderful is how your little man dealt with something everyone finds difficult. The fact that in his time of grief he could express emotion really is something. They say in times of trouble look for a positive and I think you just found it! Thank you for sharing this with us at #TriumphantTales. I hope to see you back next week!

  3. Calleen, I’m sorry you lost someone so close to you. I’m sure that was hard for your whole family and certainly for your son as well, even if he couldn’t express it fully. I pray that beautiful memories of her will bring a smile to your face in the days and months ahead.

  4. First; I am very sorry for you and your family’s loss. It is difficult enough to deal with your own ocean of emotions; but to deal with his tidal wave of deep rooted emotions must be tough as well. Second; just got to love him. He; being who he is; reminds me of my daughter when my mom passed. (she is not a sped; but the lesson learned that day ..amazing) She was all of 4; verging on 5 when my mom passed. During our service; we were giving testimony of my mom. We were all in our own world of grief when this little voice informed us that she had something to say; we all listened to her wisdom as she simply said “I miss my grandma Winnie; she cooked in the microwave for me” Brought grown men to their knees. Bless your son; expressing emotions is difficult enough when you are not disabled; expressing emotions when you are; well that can just bring grown people to their knees.

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