Walking Through a Funeral as Special Needs Parents

Last week was a difficult time for my family. My grandmother died, and we needed to be with our family for the funeral and to grieve together. 

Death is a hard fact of life for children to process. There are few things I have found harder, as a parent, than trying to explain the realities of death to our children in an appropriate and meaningful way. Those conversations always happen as I grieve and attempt to process my feelings, as is the case for any parent. This conversation has an extra level of difficulty when you share about the death of a family member to a child with a neurological need or disability.

That was our situation last week. I share it to walk you through our experience of conveying death and grief to our child while also dealing with our hurt and sadness.

Our oldest child, who is autistic, struggles with things being out of routine. There is a desire for everything to happen the same way every day, from meals to activities. He finds it hard to react to changes in another person’s emotions or how to process his emotional needs. He has a difficult time, as well, with grief. While we had not been able to see my grandmother in some time, we were very close to her. She would often stay with us to help us with him, especially when he was younger when I would be away on a church trip or at an annual conference. We knew he would find her death hard and not know how to process this reality.

Moments after we received word about her passing, we focused on how best to tell him what had happened. I wanted to be the one who told him since she was my grandmother, and I would leave later in the day to handle the arrangements. I told him that she had died, that she was with Jesus, and that we would say goodbye to her later in the week at the funeral. I was not sure if he understood what I said, and he returned to his tablet drawings. We wanted him to have as much of his routine as possible since the week would be chaotic.

It was hard at first to figure out how he was processing things. As my wife and I grieved, life was seemingly the same for him. Eventually, though, he responded in the ways he typically does when he is overwhelmed: easily excitable, on edge, loud, and, yes, at times aggressive outbursts. He was upset because someone he loved had died. He did not know how to process this change. Now our attention is focused on helping him to self-regulate and process what he was dealing with while also dealing with our stress and grief. (This is a time when it did not help that I was not only planning the funeral but also the one officiating as the pastor.)

Because of the stress he was already feeling, my wife and I spent most of the early part of the week not talking about our grief but about what we do about the funeral. We were both stressed about the funeral. Not because a funeral can be stressful for anyone, but because of the challenges in how best to care for our son’s needs during the service. My grandmother’s funeral was to take place about two hours from our home, and I needed to be there early with the family and take care of the final details. Do I go by myself? Do I go the night before and everyone else comes later? Do we all go together, in separate cars, and go to the funeral at different times? 

The latter option was what we decided upon. At the time, we thought it was the best decision. We were wrong.

We thought it through and looked at the pros and cons of each possibility. We prepared our son for what would happen through a visual schedule, which we have used in the past for him. We did not, however, account for our stress and grief in the situation. 

When I got ready to leave, approximately three hours before the funeral, he could not understand why he was not going with me. He wanted to go where I was going. I wanted to take him with me, but my wife and I felt it would be too much and too long for him to be there while I was also caring for the family and preparing for the funeral. His frustrations came out. It was clear there was no way he could handle the funeral. As a result, we were all stressed and tired.

What do you do? Do you force him to go to the funeral simply because it is what you do when someone dies in your family? Or do you care for his needs and let that be the guiding decision point? He needed to go home. He did not need to be at the funeral. So, what do you do? 

We decided that my wife and children would go home while I stayed at the funeral. I would leave after I finished my pastoral duties, and would not linger with the family afterward. 

It was a hard decision for all of us. We needed to be together as a family in a time of grief, yet we were apart because of the things we deal with in our family. I needed my family with me. There have been plenty of times when I have gone to church to lead worship as a pastor, only for the rest of the family to worship online at home because that is what was needed to care for our oldest child. I never felt alone in those moments. I felt entirely alone during the funeral and the graveside. I had no one to support me in my grief. I was a ghost. As a result, I had divided emotions and attention throughout the day. I needed to be with my family to lead the funeral, but I wanted to be home to care for my child and his needs.

Regardless of my loneliness, I would rather my son be safe than force him to do something that could only make things worse for him. He needed to go home, even as I struggled with being alone.

Once I got home that evening, everything returned to a relative sense of calm and normality. Our oldest son started to breathe a sigh of relief. We were grieving, but we were together.  

In the aftermath, my wife and I kept thinking about how in this situation we did everything that had worked previously to help him through stressful situations. We talked with him. We gave him space to process. We gave him what he needed to comprehend the schedule and to know what was coming. What we did not account for, and it is a lesson learned, was how he would react to our stress, exhaustion, and grief during the week. Perhaps more than anything else, it was our stress and grief that may have been too much for him. 

Then again, it is hard to know for certain. Every day is a day to learn and adjust as a special needs parent, even while going through the process of grief at the death of a close family member.