Coping with Death
By Becky Grant Widen
I recently dealt with the first death of someone close to me. At 39 I should be thankful that I was so old for this “first” in my life. My Grampy Jim was a big part of my life growing up, and as an adult I would go visit him and Nanny for a night or two; often bringing one of my 3 boys along for the trip. Noah, my 11 year old with ASD particularly enjoys these visits.
When I got the call from my mom that Grampy wasn’t doing very well and that I’d need to come soon if I wanted to see him; I had an internal struggle trying to figure out the logistics of how I could bring Noah on this visit, when in all likelihood Grampy would die while we were there. Yet this was exactly the reason I wanted to bring him; I couldn’t imagine the devastation Noah would experience finding out that his great-Grampy Jim died, never to see him again. Even though I knew it would be hard, I had no doubts about Noah’s ability to cope with being there, and that it would be far worse for him to NOT be there.
I made arrangements with my husband Kurt that he would stay home with the younger boys, and Noah would go with me to see Grampy in his last hours. I explained to Noah that Grampy Jim was dying from the cancer we knew he had, this will probably be the last time we ever see him, and that it could be scary and sad. “Do you want to go to see him one last time, Noah? He will probably die while we are there.” I gently asked, but I knew what the answer would be. “I want to see him, I’ll miss him even though he calls me ‘Little Kurt’ ” Noah said. That gave me a much needed grin.
We made the 2 hour drive to northern Maine, and walked into the eerily quiet house where my wonderful aunt, a nurse, and her three daughters tended to Grampy’s care and tried to put my 84 year old grandmother at ease. Grampy Jim was in pain and very uncomfortable; my Aunt was getting him started on hospice-care pain meds. Once the meds kicked in to the level he’d need, we knew we wouldn’t have much longer that we could communicate with him. Grampy wasn’t up for visitors, so we visited with my cousins a bit before Noah settled into his usual routine when we visit: go into Nanny’s bedroom and watch the tube, with a snack or two from the cupboard.
We went into Grampy’s room about 2 hours later when he was feeling better. He was a bit confused, but knew who we were, and greeted us with his typical ‘WELL, WHOOOOOOO’S THIS???” in as robust of a voice as he could muster, “It’s Noah…. Little Kurt!” he exclaimed, and gave Noah a big grin while hugs were shared between them. My mom, who’d just arrived, and I, immediately welled up with tears. Watching Noah give reassuring pats to my dying grandfather was just too much to bear. Unlike some children and adults even, there was little fear coming from Noah. He was sad, but mostly, he was compassionate; patting Grampy’s once strong hands, kissing his long since bald head, and looking at him with the kindest, most caring eyes.
I left the room shortly after, and Noah didn’t visit him again until the next day, at this point Grampy was unable to talk other then respond with a nod, a moan, or perhaps a yes or no. While I spent a large part of the day and evening in with Grampy, Noah stayed in Nanny’s bedroom watching TV and taking full advantage of my distraction by loading up on pure crap food that he rarely gets at home: 4 cokes, ice cream, chips; you name it, I found the remains of this feast when I checked in on him at 10pm. The rest of my family found it a riot, counting how many trips he made back and forth from the kitchen to the bedroom with a new load of treats. No one bothered to tell me, they called it comic relief. I can’t say I would have done a damn thing about it if they’d told me what he was doing. I didn’t care. I was too consumed with Grampy. After 5 years of intense biomed, the days of gluten fog and sugar craziness were long gone, all that resulted now from this sort of feast would be a belly ache. Noah would have to suffer the consequences and hopefully learn from his mistakes.
We didn’t expect Grampy to make it through the night so Noah and I, rather than stay at my Aunt’s like the night before, stayed the long night with my cousins and our mothers, waiting and praying for grampy to be at peace. My mom and Aunt were exhausted from the night before and slept as best they could while my cousins and I sat around the kitchen table all night, occasionally checking in on Grampy and Nanny, who slept holding her childhood sweetheart’s hand for one last night.
Noah slept in Grampy’s reclining chair from about midnight until 4:30 am, when he awoke just as I was hoping to take a short catnap. Noah suffers from sleep issues typical with ASD’s, and could not go back to sleep as tired as he was. His fan that he needs to sleep was actually put in Grampy’s room the night before to drown any noise from the rest of his house. I tried to encourage Noah to try to listen to his fan in the other room, but all we could hear was Grampy’s heavy breathing, staggered by rhythmic, short cycles of shallow, almost non-existent breathes. This was the one moment, in those deafeningly quiet hours, where I second guessed my decision to have Noah here with me.
What if I fell asleep and Noah was the only one awake to hear Grampy’s breathing stop? That fear gripped me, so I coaxed my 90 lb boy onto my lap in a chair and together the two of us fell asleep despite the sounds of Grampy’s breathing. I woke at about 6:30am to the silence of what I thought was the end. Everyone in the house jumped up and ran to Grampy’s bedside, startling Nanny awake yet finding Grampy still alive, with a changed breathing pattern of only the slow shallow breathes. Noah went into Nanny’s bedroom to go back to sleep. We all sat with Grampy for another hour or so, when I went to lay down for a short nap on the couch. Within a few minutes my family was calling me that grampy had died and I bolted into the room, exhausted and relieved that he could now be at peace, but devastated that I had lost my dear Grampy Jim.
Within a few minutes Noah woke up and came into Grampy’s room where we all sat around him on the bed. I told him that Grampy had died and he instinctively reached out and patted Grampy’s hand, just like he did on his other visits. He later stood in the doorway of Grampy’s room, put his hands together, bowed his head into them, and prayed like I’ve never seen. His eyes were squeezed so tight, trying to make whatever he prayed for come true. You have to understand that I have not attended church in 20 years; the only exposure he has ever gotten to prayer is the dozen or so times a year we meet with a Christian homeschool co-op that we are active in.
Perhaps he knows something I don’t. Sharing this sad experience with him is something I will hold onto forever. I am consistently amazed by how our children, no matter how impaired or able, can feel and grieve, empathize and relate….. sometimes in ways that seem so deeply spiritual, and other times in ways seemingly uncaring. We should never underestimate the beautiful hearts and souls of our children.
Photo credit Caitlin Abrams Photography.
Becky Grant Widen is an NAA board member with 13 years experience in public health non-profits, with a history in tobacco control and community health program development. She currently works a public health consultant, focused on grantwriting for local and national autism organizations. As the parent of two boys, one of whom is on the autism spectrum, Becky is committed to using her experience to benefit children with autism. In her home state of Maine, Becky has organized local autism events, testified before the state legislature to eliminate the use of mercury in vaccines, and helps guide parents just starting out on the autism journey.
Thank you for the positive responses and for sharing your own stories. It was very therapeutic to write, I'm glad I put it down on paper. My aunt, cousins and grandmother all loved reading this piece and your comments.
Posted by: Becky | January 18, 2011 at 07:24 PM
We lost my father when my ASD son was almost 4. It was hard because I didn't know how to explain it in terms he would understand. We just lost my husband's aunt that we would visit at the beach every summer on January 3rd. I am not sure how things will be this summer when we go on vacation not at her house. Although my son is older now it is still hard to explain death to him. Thank you for sharing your story.
Posted by: Jennifer | January 16, 2011 at 08:01 PM
Sorry you lost your Grampy, Becky. You are wise to allow Noah to be there to experience and process this with you and your family.
Posted by: Shannon Johnson | January 16, 2011 at 06:54 PM
From "across the pond":-
Maybe twelve years ago my 8 year old ASD child's dearly loved 80 year old "Grandpa" died after years of indifferent health. He always had time for all his grandchildren but had a very special bond with this one. Later that year my ASD child had their birthday and said, "If I take a slice of my birthday cake to Grandpa's grave, will he come up to see me?". All of us adults who heard those words had difficulty controlling our emotions while I tried, yet again, to explain gently about the permanence of his death. Anyone who believes verbal ASD children to be lacking in emotion and the concept of emotional loss should have been there .....
Posted by: ElizaCassandra | January 16, 2011 at 11:27 AM
Thank you for sharing Becky. I too am 38 and just lost my 17 year old nephew a week before Thanksgiving. It was my first close death and my gramps is not doing well. My 11 year old Daniel is always a concern since he is non-verbal, I don't know how he will cope with my grandfather. We are military and have only just moved 4 hrs away for the first time in 16 years, we try to go in frequently but I struggle to know how connected he is to my large family.
Thank you for sharing your beautiful story. My pain is still really raw and I needed that.
Posted by: Bre | January 16, 2011 at 03:38 AM
VACCINES CAUSE AUTISM
Great story, I have taught my 6 year old autistic daughter about Jesus Christ and when I pray to God at night I teach her to pray as well. Teach your children about God and he will help them understand about him and bless you and your family. My child has come a long way and I do believe in my heart of hearts that he does hear EACH AND EVERYONE OF OUR PRAYERS so you should continue to pray asmuch as you can.
Autism Grandma I would just like to tell you how much I personally appreciate your spiritual comments thank you.
VACCINES CAUSE AUTISM
Posted by: WILLIE | January 16, 2011 at 03:29 AM
Your story has touched me so, tonight. Thank you for sharing it. I miss my grandfathers and my grandmother, too.
Posted by: Penny | January 15, 2011 at 08:00 PM
Becky, your story is heartwarming although so sad. We should not underestimate the ability of our ASD children to understand compassion and thier own ability to conceive of the spiritual:
I pray that my grandson has an understanding of the Ressurection from God's word before he loses anyone in our family, and I pray that these scriptures comfort you and give you hope:
“O Death, where is thy sting?
O Grave, where is thy victory?
Thanks be to God who gives us the victory
through our Lord, Jesus Christ.”
~1 Corinthians 15:55,57~
“The trumpet shall sound,
and the dead shall be raised incorruptible,
and we shall be changed.”
~1 Corinthians 15:52~
“Look! The tent of God is with mankind….
And He will wipe out every tear from their eyes, And Death will be no more, neither will mourning nor outcry nor pain be anymore.”
“He will actually swallow up Death forever and the Lord Jehovah will certainly wipe the tears from all faces.”
Do not marvel at this, because the hour is coming in which all those in the memorial tombs will hear His voice and come out.”
“And there will be many of those asleep in the ground of dust who will wake up…”
Posted by: AutismGrandma | January 15, 2011 at 06:27 PM
Thank you for sharing your story. I know it will help our family as we face the same loss.
Posted by: Amanda Blinn | January 15, 2011 at 05:50 PM
Becky, my condolences and a big thank you for sharing with us this beautiful, touching story. I am so sorry for your loss.
Posted by: Kim Mack Rosenberg | January 15, 2011 at 05:35 PM
These generational links are so crucial to our children, especially our children on the spectrum. The unconditional love of a grandparent or great-grandparent is pure and deep. It will forever be embossed on your Noah's heart. What an incredible gift for your family and for Noah!
Posted by: Judy Converse MPH RD LD | January 15, 2011 at 02:37 PM
I am very sorry for your loss.
Posted by: Carolyn M | January 15, 2011 at 02:13 PM
Condolences for your loss. I think it is really important to hear stories like this; hard as it is it is something we must all come to terms with. You reminded me that when my son's great Grampa died, it was he that suggested, " mat be we should say a little prayer." it was very touching.
Posted by: Jen | January 15, 2011 at 01:59 PM
Beautiful, Becky. I'm so sorry about your Grampy.
Posted by: kim spencer | January 15, 2011 at 01:52 PM
Thank you so much for posting this story. It will help me know what to do if/when we are in a similar situation, as death is a part of life. You handled it very well. I had tears in my eyes throughout the reading.
Posted by: luckymom2D | January 15, 2011 at 01:29 PM
Thanks for sharing this beautiful story. I felt like I was reading our family's experience of my dad's passing a few years ago, and the effect it had on my own son with autism. God bless our wonderful sons and "Grampys!"
Posted by: Gayle | January 15, 2011 at 12:22 PM
A beautiful story Becky and thank you for sharing this. We experienced something very similair when my father passed in 2001. Our son with ASD and he had a very special relationship, much like you've described between Noah and Grampy Jim, with him since he was small. The only person who he would go to,crawl up and sit on his lap perfectly still, while he told him stories. Amazing to see.
The struggle of how to support our children in these times is difficult, not knowing how they will react or be affected. This story will reassure many parents and provide a path to show that grieving with others is a good thing in processing what transpires for some. It's difficult to gauge, but this may ease some parents decision making process.
Posted by: Carolyn Gammicchia | January 15, 2011 at 11:15 AM
What a beautiful story. Thank you for sharing your experience. I am reading with tears streaming down my cheeks.
Posted by: ASusan | January 15, 2011 at 07:36 AM
Amazing story - thank you for sharing it. Words cannot express how much it touched my heart. God bless this sweet child and his family. I am so sorry for the loss of your dear Grampy.
Posted by: Parent | January 15, 2011 at 06:34 AM