When Death & Autism Collide
Although death is part of life, it is not a topic that is discussed often. The loss of a loved one is difficult at any time but the loss of the young is almost incomprehensible, and when the loss is unexpected it can be shock to our very existence and one many of us believe we will not survive…. When we encounter death as adults we often experience a variety of emotions; from extreme sadness and grief to overwhelming guilt or fear. Because as individuals, we don’t all share the same religious beliefs or thoughts about the afterlife, the same traditions, or ethnic backgrounds, final goodbyes can be handled differently….
Some may host funerals while others have memorial services, or wakes. So with all the variations how do we ever explain death to our children with autism, developmental delays, or special needs?
This is the very question I found myself asking a few weeks ago. My paternal grandmother, “Memaw” passed away on Christmas Day. Although she suffered from dementia and had not been herself in sometime, her death left a huge hole in my heart. But despite my personal loss as that of a grandchild, I found my concern to be also focused on my children, my son with autism particularly. I wasnt sure how we were going to address it but I was certain it must be done.
As with many things in life, this journey called autism doesnt come with a “how to manual“….. Its more of trial and error, learn from your mistakes, day by day, hour by hour and most often, minute by minute journey….
Several years ago my maternal grandmother passed away, she too had been sick for sometime. And although neither of their deaths came as a surprise, I was not prepared at that time to address death with Will. I guess part of me didnt feel like he would understood, but another part of me selfishly thought if I didnt have to talk about or explain it- it wasnt real…..
But unfortunately that didnt make it so…. It was real, it was painful, and avoiding it didnt do anyone any justice…. Especially my son Will. Even now he will bring me her picture and want to see her…. I know understand from his point of you that she was hear one day and gone the next…. No explanation, no see ya on the other side, no goodbyes…. Because my lack of preparation and fear my child lacks the understanding of why his memaw prissy just disappeared… I was determined this go around to not repeat the same mistakes…..
So I had a plan……
I didn’t NOT talk about it. I had learned the hard way that avoiding it made it worse- that my child’s misinterpretation of his memaw just disappearing from his life was far worse than reality of her death. So this time, I provided an explanation on his level; relating it to something he could understand. I assured him that his Memaw loved him and always would… I did this on many occasions as her condition worsened. I wanted him to have as many opportunities as possible to accept the news and prepare himself…. (Although I don’t believe your heart can ever be truly prepared enough to lose someone). In doing this- I believe it helps avoid any personal responsibility the child might otherwise feel when their “loved one” just disappears from their life….
Please keep in mind with what I am going to say in the next few sentences. I do not want to offend anyone or cause a fuss. I realize people are far more important than what others deem as “animals”… In our home however, we have had inside pets my children’s entire lives. They are a part of our family and are treated as such. Therefore, when one of them passes it is just like the passing of a family member… It doesn’t matter to us that they have four legs and fur…. Over the years, We have dealt with the passing of pets on several occasions… and unfortunately a week after the death of my Memaw, we had two pets pass away four days apart…. so death has been like a heavy cloud over our house since 2015 begin. When our pets die, we have always had a funeral for them. I believe it helps our kids in the mourning process and gives them a chance to emotionally and physically say goodbye. This has been especially helpful for Will. Because of his autism, he is a very literal young man. Having the chance to physically see the pet put in the ground and tell it bye bye although tragic has enabled him to have an understanding that the pet is no longer with us…… I must admit however, that it hasn’t always been easy to do this….. (For other stories related to the burial of a pet read Will vs. Willie here…. and the story continues here in part 2)
Now because a burial for a pet is much different in our society than that of our human loved ones, we could not treat it the same…. But here is what we did do. Please keep in mind that your child’s age, disability, and developmental age should be considered….. Not all the suggestions that worked for us will necessarily work for you.
We are big at our house on using a calendar with real pictures and social story books with real pictures… My Memaw was unable to attend our family Christmas on Christmas eve. So when we (Will and I) did his calendar for the week, we didn’t include her picture in those that would be in attendance. After her death, we used a social story I created to address her going to live with Jesus…. I used pictures of the specific funeral home, the graveside, and a casket…. As we would go through the social story, I shared with him how there would be pretty flowers in the room around her because she loved flowers and it was like her own little flower garden…. We talked about how sad we would be without her, but how she would be with Jesus and we would see her again. But for now we would have to say bye bye……
When my grandmother was ready for viewing, we made arrangements with the funeral home to see her. On the drive there, I continually reminded Will of where we were going, and the other things that I had discussed with him throughout the reading of the social story. Upon arrival, he showed some hesitancy. He had become agitated as we had gone by the road to the assisted living facility where my Memaw had lived for the past several years. He believed she should still be there just as I wanted to believe….. With a little coaxing, I got him out of the car. We entered what seemed like a large facility when it is empty…… We were greeted by an employee who led us to the room. It was well lit, and we were alone just as we had requested, I didn’t want Will to be afraid or for him to feel it was something scary, nor did I want him to think she was just asleep. The casket was open and the flowers were all in place. As I took a deep breath, praying that God would help me keep it together, I led my son to the casket to tell his great grandmother good bye…..
Just as we had practiced, Will gingerly looked at his great grandma, stared for what seemed like an eternity as I stifled my tears. He then slowly and nonchalantly waved, looking at me for reassurance saying “Jesus”. I assured him she was with Jesus and he smiled and walked out….. Not sure as to where he was going, I followed after him and we left….. As tears of relief, extreme sadness and a hint of satisfaction rolled down my checks……
We (Kris and I) chose for Will not to go to the public visitation or funeral. It wasn’t because I thought he wasn’t old enough, or wouldn’t understand. It was solely based on these two conditions. 1. Will feeds off of me…. When I am upset, he is upset; when all is okay in my world it is in his…. I couldn’t stifle my feelings through the remainder of the grieving process. I too needed to accept my grandmother’s passing and needed to do it unbridled. 2. Will most often goes with us where ever we go. We try not to limit his experiences because of his autism. However, we do not like to take chances at others expense either. Therefore, Will has not attended a wedding, or a funeral. These are ceremonies that would be difficult to remove Will from without causing a huge distraction. You however, may choose to allow your child to attend and that is your choice.
As far now, Will has not mentioned anything about my Memaw his focus seems to be more on missing our pets but he hasn’t been to our home town either where my grandmother lived. Below are some good basic recommendations that can prove to be useful when having to address death with your child with autism or with special needs. Although I can suggest things, it is not an end all be all list. YOU, know your child the best, YOU know what will work, and YOU know what won’t. I only encourage YOU to do what YOU feel comfortable with and that is best for the situation and YOUR family….
For children on the autism spectrum, the many facets of grief can be potentially more confusing and distressing than for a neurotypical individual. Parents may notice behavioral changes–subtle or overt–as well as differences in sensory perception. It is very important to be aware of these changes.
Avoid euphemisms, slang, or terminology not understand by the child. In addressing situations such as that of death, we often find ourselves using terms such as passed away, gained their angels wings, passed to the otherside and RIP. Although as adults we understand this terminology and feel it is a kinder and more gently way of describing ones demise as compared to the ugly word “death”. However, most of the afore mentioned words are very abstract and can be very confusing for those who interpret language in the most literal way. One of the most common miscommunications that occur when we discuss death with small children, those on the spectrum, or those with disabilities is we find ourselves using abstract thoughts to describe a very concrete and final circumstance. For instance, If you believe in Heaven, like I do, you want to ensure your child that the lost loved one is in Heaven with Jesus. But sometimes such in my case with Will, we walked in the funeral home and he looked around as if surprised that “heaven” had couches and chairs….. You do not want your child to think that their loved one moved to a different place and just isn’t coming to see them any longer. Death in itself is a very complicated concept to grasp for many, but especially for those who have difficulties with understanding abstract ideas or concepts. Being straight forward with your child in the finality of death can sometimes be described as meaning the loved one can not breathe anymore, walk, talk eat, play etc.
Grief is expressed differently. Sometimes as adults we have a difficult time remembering that people experience grief in many different forms and thus react in a variety of ways. It is important to remember that children too can experience grief in different ways from their peers and most definitely adults. Some people will cry softly while others almost yelp, others may remain silent while others may talk continually or laugh nervously. Remember that even if your child cannot speak, it doesn’t mean that he or she does not have anything to say. Parent’s should ALWAYS act as though your child is aware, and is treated in this manner. Losing someone close to us is difficult for everyone, even those who may believe doesn’t understand. Reassure your child throughout the process they are allowed to grieve in whatever manner they choose. Just because they don’t grieve in a way you expected or the way you does not mean they didn’t understand or don’t care.
Expect unusual behaviors. Grief is often displayed through behaviors for children with special needs this maybe the most visual sign of their grief. Many factors can contribute to their behavior from a change in schedule, high emotional state of parents and family members or a lack of understanding by the child or intense fear of what may happen next. For children on the autism spectrum, grief can be potentially more confusing and distressing than for a neurotypical individual. Many children also suffer differences in their sensory perception due to the heighten emotional state in their circle of comfort. It is very important to be aware of all changes. Sometimes as parents, we may have to over assure your child that everything is okay, overlook some behaviors, and intervene for others.
Keep the Memory Alive. If your child is verbal and wishes to talk about the loved one, give them opportunities to do so…… although our loved ones are not available any longer to visit or speak to doesn’t mean our desire to be with them or speak of them goes away…. Share stories, look at pictures and make a point of doing things that were important to your loved one. however, keep in mind that everyone grieves in the same manner or in the same amount of time, it might be weeks or months before the subject come up. Do not pressure your child by asking multiple questions or putting demands on them regarding the expression of their feelings.
I hope our experience when death and autism collided will be beneficial to you and helped prepare you for the loss of a loved one….. It isn’t something we ever want to think about but as with everything else in our lives when a child with special needs is involved it seems to go better when we are prepared…… hopefully I have made it easier for you!
Blessings Your Way…..