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3594 Memoirs to Mom and Dad
Saturday, July 12, 2008: 1:00 PM-2:15 PM
Sun Ballroom 2 (Gaylord Palms Resort & Convention Center)
Parentally, I worry who will cut my son's toe nails? Did Stephen's dad ponder if he would be able to make friends? Dena wonders if her mom ever believed she could take care of myself? Will Dena's estranged daughter forgive her for living in the “not knowing” world where flexibility and temperance were inaccessible for her. Both of us have lost a parent. Can we really forgive their foibles? How can we appreciate the gifts as we live today?
Dena: "Standing in the bedroom, I looked down to button my white linen pants. I had chosen them because I knew the flight home (coupled with the tension of the journey) would demand the comfort of their light-weight, silky feel. Transitions; particularly permanent ones, always put my sensory system ‘on high’ for a week or two. My husband called to tell me, “Mom doesn’t look good. I think you need to come home now.” I was coming home right now.
Stephen: I need to get home. Like Dena, I travel extensively to present at conferences -- sometimes to the other side of the world. This conference was only in Alabama or 900 miles from home.
Dena: The pants are drawstring with a single button. The button was missing. My brave front began to dissolve. Enormous waves of grief threatened to breach my emotional hull.
When raising kids with autism, all parents worry about our kid’s “thing”. When I am gone, who will cut his nails? When I am gone, who will tell the nurses ‘no needles’? I wonder if my mother worried about my “thing”. When I am gone, who will sew Dena’s buttons?
I have never sewed a button. Mom is my seamstress. For 48 years, with nothing but the most meticulous attention to she sewed my hems, buttons, clothes, costumes and my wedding veil. Within days, my seamstress would no longer be available for service.
I tried subduing the waves with an Ativan. My son who lives so well with autism and understands logically that death is part of the “circle of life” was in the next room watching TV. He knew I could not maintain with too many questions. Mock composure was the glue that would hold us both together for the next hours of packing and planning; mock composure and better living through drugs.
I was slow moving. This is unusual for me. Travel usually pumps up my adrenaline which helps me focus. But this was not the excited positive stress I thrive on; this was different. Under this stress, my central sensory system (vision) had already shut down.
When vision shuts down, the others become more intense. Patrick’s TV noise was nearly unbearable. I had to actively talk out loud to myself to block out the mowers outside. I was foggy in my head. I could not concentrate; I could not identify items in the foreground from the background.
Then there was a shift. Once all my systems peaked, I ‘checked out’ and everything just became a rhythmic hum. My packing became more automated and rote status. If not, we would have likely had only underwear or no underwear whatsoever, had those entrenched habits of compartmentalizing and banal packing not kicked in.
Perhaps angels were surrounding us or maybe company does take care of its own when it can. Not only did we get on the plane; we were seated in the bulkhead seats. Gratitude filled me. These are little planes and I could not have managed Patrick’s customary complaining about small planes. The bulkhead seats make even a small plane feel larger.
Stephen: Can’t the pilot fly this plane any faster? They are rated for almost 600 MPH but it pokes along in the low 400’s. My sister called before I left to tell me that my dad is losing his fight with Parkinson’s combined with a stroke. I think about the meaningful times I had with my father.
Dena: Always creatures of habit, Patrick and I automatically did what we do on planes. Patrick pulled out his chocolate milk and Nintendo DS. I got out this week’s book and pen (I am always reading and I underline everything). How ironic; the book of the week was Bettleheim; as if his stuff is not hard enough, I was in the middle of reading Bettleheim. The ultimate Mother-Daughter story... I guess other people would have picked a nice fluffy magazine, but I can’t change books until one is finished. I was stuck reading Bettleheim on a plane to Kentucky to watch my mother die.
Stephen: And I was stuck on this pokey plane alternating between listening to Cat Steven’s “Cat’s in the Cradle” and Franz Schubert’s song “Der Erlkönig” (The Earl King). The first song is about a son who doesn't have time to visit with his father whereas the second narrates the desperate ride of a father on horseback to reach home before the sick son in his arms passes away.
"This session will discuss the emotions and grief when an Aspie loses their parent.
Dena: As a mom, I wonder who will cut my son's toenails for him. I wonder who will help him shave, or make sure he REALLY brushes well. As a daughter, I am both grateful and angry that my mother is gone. She inspired me, loved me and made me feel inadequate; sometimes all with the same phrase or comment.
Stephen: As a son I too have double feelings (mixed emotions in non-spectrum speak) about my father. Many things about him bewildered and frustrated me. On the other hand there are many things I have to be grateful for that I can carry on with me.
Dena: As a mom, I wonder if my estranged daughter will ever really "come home" to understand how living in the world of "not knowing" caused me to be so critical and inflexible. And most importantly, that when she went away to college, I went to a place of self-awareness, self-monitoring and less critical thinking. I wonder if she will forgive me.
Stephen: My father’s physical body no longer works and is under the ground. However, his spirit lives on in the work I do in helping children and adults on the autism spectrum lead fulfilling and productive lives to their greatest potential.
DENA’S PORTION OF THIS PRESENTATION IS INSPIRED BY HER UPCOMING BOOK, "A MEMOIR FOR MOM; AN ASPIE WOMAN SAY'S GOODBYE TO HER MOM"
Stephen: I need to get home. Like Dena, I travel extensively to present at conferences -- sometimes to the other side of the world. This conference was only in Alabama or 900 miles from home.
Dena: The pants are drawstring with a single button. The button was missing. My brave front began to dissolve. Enormous waves of grief threatened to breach my emotional hull.
When raising kids with autism, all parents worry about our kid’s “thing”. When I am gone, who will cut his nails? When I am gone, who will tell the nurses ‘no needles’? I wonder if my mother worried about my “thing”. When I am gone, who will sew Dena’s buttons?
I have never sewed a button. Mom is my seamstress. For 48 years, with nothing but the most meticulous attention to she sewed my hems, buttons, clothes, costumes and my wedding veil. Within days, my seamstress would no longer be available for service.
I tried subduing the waves with an Ativan. My son who lives so well with autism and understands logically that death is part of the “circle of life” was in the next room watching TV. He knew I could not maintain with too many questions. Mock composure was the glue that would hold us both together for the next hours of packing and planning; mock composure and better living through drugs.
I was slow moving. This is unusual for me. Travel usually pumps up my adrenaline which helps me focus. But this was not the excited positive stress I thrive on; this was different. Under this stress, my central sensory system (vision) had already shut down.
When vision shuts down, the others become more intense. Patrick’s TV noise was nearly unbearable. I had to actively talk out loud to myself to block out the mowers outside. I was foggy in my head. I could not concentrate; I could not identify items in the foreground from the background.
Then there was a shift. Once all my systems peaked, I ‘checked out’ and everything just became a rhythmic hum. My packing became more automated and rote status. If not, we would have likely had only underwear or no underwear whatsoever, had those entrenched habits of compartmentalizing and banal packing not kicked in.
Perhaps angels were surrounding us or maybe company does take care of its own when it can. Not only did we get on the plane; we were seated in the bulkhead seats. Gratitude filled me. These are little planes and I could not have managed Patrick’s customary complaining about small planes. The bulkhead seats make even a small plane feel larger.
Stephen: Can’t the pilot fly this plane any faster? They are rated for almost 600 MPH but it pokes along in the low 400’s. My sister called before I left to tell me that my dad is losing his fight with Parkinson’s combined with a stroke. I think about the meaningful times I had with my father.
Dena: Always creatures of habit, Patrick and I automatically did what we do on planes. Patrick pulled out his chocolate milk and Nintendo DS. I got out this week’s book and pen (I am always reading and I underline everything). How ironic; the book of the week was Bettleheim; as if his stuff is not hard enough, I was in the middle of reading Bettleheim. The ultimate Mother-Daughter story... I guess other people would have picked a nice fluffy magazine, but I can’t change books until one is finished. I was stuck reading Bettleheim on a plane to Kentucky to watch my mother die.
Stephen: And I was stuck on this pokey plane alternating between listening to Cat Steven’s “Cat’s in the Cradle” and Franz Schubert’s song “Der Erlkönig” (The Earl King). The first song is about a son who doesn't have time to visit with his father whereas the second narrates the desperate ride of a father on horseback to reach home before the sick son in his arms passes away.
"This session will discuss the emotions and grief when an Aspie loses their parent.
Dena: As a mom, I wonder who will cut my son's toenails for him. I wonder who will help him shave, or make sure he REALLY brushes well. As a daughter, I am both grateful and angry that my mother is gone. She inspired me, loved me and made me feel inadequate; sometimes all with the same phrase or comment.
Stephen: As a son I too have double feelings (mixed emotions in non-spectrum speak) about my father. Many things about him bewildered and frustrated me. On the other hand there are many things I have to be grateful for that I can carry on with me.
Dena: As a mom, I wonder if my estranged daughter will ever really "come home" to understand how living in the world of "not knowing" caused me to be so critical and inflexible. And most importantly, that when she went away to college, I went to a place of self-awareness, self-monitoring and less critical thinking. I wonder if she will forgive me.
Stephen: My father’s physical body no longer works and is under the ground. However, his spirit lives on in the work I do in helping children and adults on the autism spectrum lead fulfilling and productive lives to their greatest potential.
DENA’S PORTION OF THIS PRESENTATION IS INSPIRED BY HER UPCOMING BOOK, "A MEMOIR FOR MOM; AN ASPIE WOMAN SAY'S GOODBYE TO HER MOM"
Learning Objectives:
- Participants will learn how adults with ASDs say "goodbye" to their parents.
- Participants will learn how grief is altered.
- Participants will learn about love and forgiveness as a person learns about their own ASD and sometimes, in light of their parent's own autistic tendencies.
- Participants will learn about how this can go from generation to generation.
- Participants will learn how we can appreciate the gifts our parents have given us.
Content Area: Family and Sibling Support
Presenters:
Dena Gassner, LMSW
Director
Center for Understanding
Dena is a nationally recognized service provider to teens and adults with AS. A co-author of Scholars with Autism Achieving Dreams, she assisted the Tennessee Department of Intellectual and Developmental Disabilities in rewriting their state handbook. She is a member of the Autism Summit Team and the Governor’s Speaker’s Bureau.
Stephen M. Shore, Ed.D.
Professor at Adelphi University
Adelphi University
Diagnosed with "Atypical Development and strong autistic tendencies" & "too sick" for outpatient treatment Shore was recommended for institutionalization. Non-verbal until four, with support from parents, teachers and his wife, Stephen is now a professor at Adelphi University where research focuses on matching best practice to needs of autistic individuals.
