Lifetimes - Grief and Autism
Susan here. Sorry about being quiet here on the blog. 2023 was quite a year for my family and My Autism Ally as an organization. You’ll be seeing the exciting things related to My Autism Ally in the upcoming months, but today I have a different story to share.
For those of you who know me personally, you know that I am a planner. I have Plan A, B, C and D at the ready. This process serves me well and generally save me headaches and meltdowns. Then 2023 rolled around and my planning skills were put to the test.
I was a long-time member of the Oreo Generation. What’s that you ask? Your part of the Oreo generation when you’re raising kids while taking care of aging parents. The first time I heard this was in a Jeff Foxworthy comedy skit - yeah, I’m that old and you should Google for that YouTube clip cause it’s funny!
Anyway, I might have mentioned before in this blog that I’m an only child. Combine that with marrying an only child and one day you realize that when your parents or in-laws get seriously ill, there isn’t a lot of help to keep up with all of the things that are happening. It’s just you and your spouse. On one hand, decisions are easy it’s just you and what you think, on the other- did I mention there isn’t a lot of extra help?
I’ve been a caretaker longer than I’ve been an autism parent. It started when my oldest child was 15 months old in 1996 when my mother-in-law became ill and had to be hospitalized. So far in my life, I’ve been a caregiver to six different family members, not including my children. I was responsible for getting them to appointments, managing finances and insurance, health care decisions, and other details. It was pretty good training for what was to come with my son’s autism diagnosis; doctor’s appointments, therapy visits, late nights and difficult conversations.
Fast forward to 2019. I was blessed with the ability to move my father into my home when he became unable to care for himself. In fact, I started My Autism Ally because I knew that I would need to make a change in my work life in order to be around home more for him. We encouraged him to move because we could see how hard it was for him to manage everything after my mom died. But he needed time to come around to the decision to move. Once he did, he was excited about was being able to spend more time with his grandkids.
Just like all kids with autism, our son Matthew was a bit unsure about all of the changes- like the renovations happening in the house, but once Grandpa arrived, he was all smiles. He was “Grandpa’s Boy” and for over three years that relationship flourished. They were good for each other. Matthew had made adjustments to his routine and Grandpa was now a part of it. Then, Dad’s health started to deteriorate.
Although Matthew had experienced the death of his 3 other grandparents, he was a lot younger and none of them were as up close and personal. We started hospice in January. We had people coming in and out of the house for months, so schedules frequently got disrupted. Matthew handled those last-minute changes pretty well. As the year went on, Dad became bed bound, weaker, less talkative and in late August, he died and joined Mom. In the end, that’s where he really wanted to be.
My head knew that these days with my dad wouldn’t last forever. My heart wasn’t as prepared. But my heart wasn’t the only one that I had to be concerned with.
Before and after my dad’s death, I spent a lot of time talking with Matthew about death and dying. Not exactly easy topics to explain to a Level 2 autistic. It’s not easy to understand for “typical” people either. My advice to families is to lean heavily into your faith tradition if applicable, but also discuss death as something that occurs to every living thing- animals, plants and people. Death is all around us. When we talk about death, we are preparing our kids for life after we die. We’re also preparing them for a time when they will face their own death as well. Years ago, I found a book Lifetimes: The Beautiful Way to Explain Death to Children by Bryan Mellonie and Robert Ingpen that talks about lifetimes as beginnings and endings. It seems fitting, when we talk about death, we should talk about life and living. I know talking about death is hard and we won’t have answers to all of their questions, but that’s okay. Part of life is learning from experiences and finding your own answers to questions. Our kids aren’t any different. But what lessons they take away and how they express their emotions might be.
It’s one thing to have someone you love die in a hospital or nursing home and you’re dreading the phone call that you know is coming. It’s a bit different when it’s happening in your home, while you’re physically caring for them. I know during my dad’s final days, I was exhausted. He was on a 4 hour medicine schedule to keep him comfortable and he was no longer responsive except when he was in pain. I would spend time sitting with him, reliving memories, watching him breathe and wondering if the next breath would come. Matthew would often come and look at him- as if he was waiting for Grandpa to say “How’s Grandpa’s Boy?” and when he didn’t, walk away disappointed. It was those times when I intentionally made the effort to talk with him about his favorite memories with Grandpa. We’d snuggle under a throw and look at photos of happy times. But since Matthew is less verbal, it was me doing most of the talking. But just because he couldn’t say how he felt, didn’t mean he wasn’t experiencing the feelings.
If you take away one thing from this post I hope it’s this, autistics often laugh to release fear, tension and anxiety. Therefore, they might laugh when it’s not appropriate or laugh uncontrollably. This has been true for our son, both as a child and as an adult. Every time we’ve taken him to the funeral home for the viewing of a loved one, he’s laughed upon seeing them in the casket. The first time it happened, my husband and I were not expecting that reaction. Now we’re better at anticipating his needs. We bring him to the viewing prior to the visiting hours, we let him walk around as needed and we do not make him stay for the viewing.
As I already mentioned, caring for my dad was filled with challenges, but I choose to look at the gifts. The gift of time spent together. The gift of remembering and laughter. But I think the best gift was for my son to experience what it is really like when someone dies. Perhaps it will better prepare him for death in the future. It’s not always sudden. It’s not something that we can avoid. As a culture, we tend to shield our children from death and put some distance between ourselves and the dying. I hope as the years go by, that my son remembers his grandpa in his better days. But I also hope he remembers grandpa in this way - that his death wasn’t scary and that there were people around him that loved and cared for him. Ultimately, that’s what we all want.
It wasn’t until a couple months after my dad’s death when I finally found the space in my life to actually grieve. There wasn’t time for that while he was dying. Yes, I was sad but there was so many other things that were vying for my attention. I was caring for my dad, trying to get the everyday chores done, therapy appointments, school, work. In the immediate days after he died, there were things to be done like funeral arrangements and financial matters. I think the same is true for our autistic loved ones and grief. It may take some time before they can process everything that has happened. You may see a number of different of behavioral issues, physical or emotional concerns related to the grieving process. You might find this article from the Indiana Resource Center of Autism helpful to find solutions for your situation.
Grieving is a process and it takes time. So be kind to yourself and to others as they may be walking this same journey. Remember, grief is the price you pay for love.