A Fact of Life (Death of a Loved One)

It’s been just over a year now since my father in law’s passing and two months since I lost my Mom. I’ve wanted to write about this for awhile now; I just didn’t know where to begin. After almost three weeks and no new blog I thought I would just start… Let’s see where it takes me.

As we all know kids with an ASD don’t like sudden changes in their lives or routines. And something sudden, like the death of a loved one can be, and was, terribly traumatic. So back in July 2010 when my father in law was diagnosed with Pancreatic Cancer we knew what the most likely outcome would eventually be. How do you prepare your child with autism for such a fate when you’re not prepared to deal with it yet yourself? We had little time to waste. It is such a horrible disease that works very quickly… As with many kids with an ASD Josh pays very close attention to details, no matter how small they will be. My in laws live just ten minutes away and seeing Pop so often we knew there would be no hiding this from him. I want to make it perfectly clear that I am no expert on the subject of explaining death to a child with autism. I can only tell you how we handled it, very slowly and in stages.

Stage one: Full disclosure

From the moment Pop was diagnosed the word cancer was introduced to Josh. He is a very inquisitive child and would definitely be noticing all the changes that were about to take place in Poppy’s appearance. There would be many questions and he would get very honest and REAL answers to all of them. As we learned what Pancreatic Cancer was and how it affected the body he too would learn. No soft answers, nothing but the truth! I followed the number one rule in our house, say what you mean and mean what you say! Some of the answers were very ‘technical’ but with some serious explaining he began to understand the nature of this nasty beast. I remember about a month before Pop passed away they were coming to our house to split wood. It was getting late and Josh wasn’t being too cooperative that morning. He stood there, not dressed yet, as I called his name…again! “Hurry up and get dressed” I said to him. He then replied, “I’m sorry Mommy I was imagining that I could take everything out of Poppy’s stomach and then put him back together again without the cancer.” Ahh… I didn’t expect that!

Stage two: Learning to ‘share’ Daddy

My husband John and Josh are very close. With John working all week the weekends were always their time to have ‘quality time’ together. That was about to drastically change. My in laws live on a farm with a house, two barns and LOTS of property that needed maintaining. Pop was VERY particular how he did things around there and John knew how much it would mean to him to make sure things continued to run smoothly. Explaining to Josh why daddy couldn’t do this, or why daddy couldn’t go there would prove to be the most difficult part of this ordeal. For fifteen months our family stayed close to home, no big family vacations, so John could be there when needed. We explained to Josh that daddy wouldn’t have his father for much longer and that it is very important he spend this time with him now. I wish Josh could have gone with him too but his autism and obsessions would have had him begging to go home just ten minutes after getting there! He once said, “I understand why daddy has to go to Poppy’s a lot but I’m still a little jealous of Poppy.”  I would often catch him looking out the window into the darkness just waiting for daddy to come home. He was supposed to be sleeping but…

Stage three: What happens to someone when they pass away?

Throughout this ordeal Josh had a lot of questions. “What will happen when Poppy dies?” I tried to keep it simple. We talked about the human spirit. How it lives on forever even after the human body is too tired to continue living here on earth. We talked about how even though the body stops working our souls, our unseen true selves, never die and go on to heaven to be with God and other loved ones who have passed on already. He seemed to find great comfort in knowing Poppy would get to see his mom and dad again soon. We talked more about this as we knew time was running out. One day while Josh was in his bedroom, door closed, he lined up all the stuffed animals on his bed. I heard him talking, or should I say teaching them, about death. “When you die your soul or spirit, call it what you like will live on forever in heaven. You will be missed but never forgotten by everybody who loves you.” That is what HE said!

When Poppy passed away on September 25, 2011 although prepared he took it very hard. His body went limp as he fell to the floor. I let him cry it all out and then we talked about all he had learned over this last fifteen months. He spent the next week at home consoling his dad like the little boy with the old spirit that we all know and love.

One problem… Josh had been to many wakes before. He knew the whole process and what was to be expected. However, my father in law was cremated and we forgot to explain that to him. He scared the crap out of my nephew Chris at the wake when, after wandering around a bit, he whispered “hey Chris I can’t find my Poppy.” Chris got nervous and said to “go talk to your mom”. When Josh came to me and asked where the casket was I had to explain what had happened and showed him where the ashes were. Maybe I should have been a little more delicate with my words, but I was completely honest with him. After learning about cremation, on the spot, he wasn’t too happy with the idea. He didn’t really have time to process it.

Stage four: Acceptance

This stage was easier for him than my husband, who is still working on it. Although he still misses Poppy he was well prepared by the end to fully understand what was happening. During those last days my father in law was surrounded by my mother in law and all of his four children. Even though we knew the end was near it was extremely important to John that Josh see Poppy one last time to say I love you (good bye) and give him one last kiss. I wasn’t sure about Josh seeing him in the condition he was in but John insisted he finish out this journey with us all. As Josh lay next to his Poppy in bed, Pop gave him a kiss and whispered “my special boy”.

Just two months ago I lost my mother on August 18, 2012. Although she had been suffering for years with many ailments this was sudden. Josh was sad but by this time was an unfortunate expert on the subject. At her wake he was the perfect little gentleman. Shaking hands and greeting people he had never even met before (I know wow). This time instead of consoling his dad he would console my father. He was always checking in on him, “are you okay Pop?”  And then in a very calm voice said, “at least she’s not crying for mercy anymore. Her body was just too tired to handle the pain and it was just time for her to go to heaven now.” HE said that!

I’m glad I FINALLY sat down to finish this (I started three weeks ago)! It feels good having shared this with all of you… Thanks for taking the time to read it!

Ann