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
