Navigating along the journey of grief is full of bumps, emptiness and fond memories but definitely more challenging when experiencing it with a child by your side. More complex when that child also has autism and the loved one was more then “Grandpa” (Wampa) but a caregiver, friend, buddy, helper, caregiver, hair ruffler, hand holder, and twinkle/wink teacher.
The one question that keeps coming up is “does he understand?” Yes he does. Johnny is learning to find his voice but that doesn’t mean he doesn’t process the loss of his Grandpa like any other 4 year old. Does he know what death is? No. Does he know about heaven? Yes, but not exactly where it is. Does he understand that Grandpa is gone forever? Yes. What is harder for Johnny is that he doesn’t have all the words to ask us about what has happened clearly or to express his feelings in a full way. He is a “cause and effect” boy who has lots of questions and looks for answers all the time so we knew this was going to be a process.
This is how we know he understands:
– When Johnny came home from school on the day his Grandpa passed away he sought me out and gave me a quick hug and then held my face in his hands and really examined my face and eyes looking for answers and seeing if I was okay. I told him I was okay and we’ll be okay.
– At bedtime Johnny turned on the light to Grandpa’s room and pointed and made a sound and then pointed at the hospital bed. His Daddy reminded him about Grandpa and Johnny got very sad and was troubled through story time. Grandpa was not going to be there to say goodnight to.
– In the morning Johnny heard me telling his Daddy that I had a headache and he ran over and rubbed my tummy and said “Momma” with pleading eyes and then looked at his Daddy and did the same. We realized that he was worried we were getting sick and would go away too and that was when we realized we needed to talk more about the cancer and reassure him about all of us. He seemed much less anxious afterwards.
– The next night the hospital bed was no longer there and Johnny pointed and said “bed.” I told him we don’t need the hospital bed any more. Do you know why Johnny? He looked sad and said “yes.”
– On this night when we tucked him to bed Johnny didn’t want me to leave and looked sad and troubled. I talked to him about feeling sad and he “Shhh!” me and I said it was okay to feel this way about Grandpa. Its okay to feel sad and even mad that Grandpa left us forever. His face just crumbled and he grabbed me and had a little cry. I stayed and comforted him for a little while and talked about happy memories with “Wampa” and then had Daddy come and give him the security he was craving.
Twice that night we woke up to him being in our room, our bedroom door wide open and all the upstairs lights on. He went back to sleep easily but we know from the past that if he’s VERY anxious he turns on lights. He sleeps with Christmas lights on in his room not because he is afraid of the dark but because the light soothes him in a therapeutic way.
Shhh! Momma!” I’ve been hearing that a lot now and “Don’t!” This is significant not just because of the grief Johnny is feeling but up until my father passed away, Johnny never made the “shh” sound or said the word “don’t”. Very bittersweet.
I think Johnny is trying hard to hold his emotions together in the daytime but little things can upset him easily. If he spills his drink, hears that we are out of orange juice or if he hears a sad song or sees a sad moment in a cartoon he gets upset. We stay calm and tell him that its okay or we’ll fix it and remember he’s grieving too.
I think what I’ll take from away from this is seeing Johnny try to take care of us. He checks my eyes for tears and hugs me a lot. But its when he bends down and kisses his baby sister on the cheeks very tenderly that brings tears to my eyes.
Yes he understands…