In November, we were introduced to the idea of recognizing and protecting autistic joy in our Fathers Support Group at the AJ Drexel Autism Institute. In December, we focused on our duties and responsibilities as fathers, especially protecting the joy in our children whether they are non-speaking, minimally verbal, or even verbally fluent. Fathers, like mothers, always worry about what will happen when they are gone. In January, we focused in depth on the fear, that was there all along, of what would happen when we are gone.
A father new to our group shared his difficulty balancing acceptance versus his expectations of his autistic son. Because he is also a professor of clinical psychology, he wondered why he wasn't better at this and why he is struggling with acceptance. Should he push his son who didn't want to go out and play in the snow or accept that he didn't want to even though his siblings were having fun outside?
From Seattle, a father with a 17-year-old son in a residential facility in New York shared the “wake up call” that he and his partner had in realizing that their son will always need what he called significant help throughout his life. The transition to adulthood is scaring them as they wonder where their son will go a year from now.
As usual, the group held mixed feelings as well. New joys emerged as the conversation of the 20 or so fathers attending evolved. For example, a 36-year-old daughter is transitioning out of the house she had lived in her whole life. She also has a job with an employer who understands autism. Who thought all of this could happen at 36?
There was also humor in the Zoom room as the father of a 14-year-old reported that they had lost access to their son's records because he had reached the age of emancipation even though he was diagnosed with autism and intellectual disability at the facility which was denying access to his records. This situation was quickly resolved by his partner's advocacy.
The father of a 19-year-old, who is doing well in college and who can take care of most basic needs, feels scared. “Who's gonna take care of him when I'm gone?” He's not going to balance meals on his own, except for waffles, French toast, and peanut butter crackers.This brother wonders if he doesn't have enough faith that his son can make it on his own. He doesn't his son overlooked just because he is not a behavioral problem or because he happens to be in college. He still needs help to have a full and rewarding life.
A 19-year-old daughter starting college is transitioning from having an Individualized Educational Program (IEP) to accommodations under the Americans with Disabilities Act (ADA). Her father as a single dad is feeling overwhelmed at times dealing with the changes but grateful that she has made it this far. What will happen when he has transitioned from this life?
The father of an adult who has been in residential care since 9 years old described his journey to acceptance. It was impossible to keep his son safe either at school or in the home because he wandered and escaped wherever he was. Because his son required around the clock care, it was a clear but agonizing necessity. He shared that parents of children with lesser support needs often express feeling sorry for him or pity him. He explained accepting his son’s need for safety and security in a residential facility has been a clearer path than most others face. This has given him the clarity and emotional space to advocate for others.
If your child needs around the clock care, it is possible to get it usually with a struggle. But if your child has lesser support needs accessing that care may be even harder. As a community, we have a long struggle to see that all needs are met. In the meantime, families have to live with the uncertainty of not knowing what will happen when they are gone.
Another father saw glimmers of hope because his eight-year-old, non-speaking son has learned to throw the trash away. This allows his father to visualize him possibly being able to work. On the theme of autistic joy, his son’s first birthday party at age 8 was a success. Family and friends came out in support. Could this support net last beyond the father’s life?
At 11 years of age residential care was recommended to another family. They refused that recommendation, and their son is now a senior in college studying animation. So, there are widely disparate possibilities throughout the breadth and depth of the autism spectrum. Stephen Shore’s parents were advised to institutionalize him when he was nonspeaking at four years old. He is working ata university now, where he is a professor of special education preparing teachers to serve students and their families in ways they need and deserve.
A brother who is the father of seven-year-old autistic twin girls expressed his heartfelt joy that they are now learning to read. Most people who know his family think his children are normal, but there are so many challenges.
15-year-old autistic twins have an autistic father who is a regular contributor to our group. He explained the need to seek different types of support and prepare his mentally gifted boy and girl to speak for themselves. Maximizing their autistic joy is the tool. It was his observation that if you're not maximizing the joy, you must be tamping it down. Because of the advances in technology that allow communication, he called this “a golden age for autistic people.” He explained there are many opportunities for socializing through online games such as Dungeons and Dragons, which his daughter is taking advantage of
Brother after brother talked about the fear that they face. As one father put it “we're all in this together no matter what the issue is, but putting my daughter in a home scares the hell out of me.”
“As fixers we look down the line,” explained another father “but look at every moment; enjoy it while it is. We can all make a difference. We need to take care of ourselves so that our temperament is in the right place to care for our family.”
As our time together wound down to a close, we summarized what we were taking away:
The future is always in the back of our minds, but we said it out loud today.
It is reassuring to know that I am not the only one with these worries.
As guys we deny stuff, and we mess up, but there's always a chance to do better every day.
I need faith even though I can't see it. I'm always worrying and asking what if? I have learned that being present in the moment and doing what we can really pay off.
It is oddly reassuring to know that we are not alone. The theme of protecting autistic joy can really keep us going and help our child connect with others even after we are gone.
“Presume competence and hidden skills,” was shared by another father, “that our youngest does computer animation is a success that was worth every disappointment along the way. It was magical.”
As we faced the elephant in the room, acceptance was reaffirmed. We don't have to rewire our kids. We need to accept them as they are.
We were left reassured that we are not alone with our fears and mixed feelings that we live with together in community. Perhaps we can have faith that answers will emerge if we keep facing the elephant.
Wishing you peace, joy, and serenity,
Robert Naseef and Michael Hannon
Fathers and father figures, we hope that you can join us this Saturday, February 17 at 11AM EST for the next Fathers Autism Support Group Meeting. We’re looking forward to seeing you! For a Zoom link to join Email autisminstitute@drexel.edu.
The featured image for this post is the book cover of The Elephant in the Room: Silence and Denial in Everyday Life by Eviatar Zerubavel. https://www.amazon.com/s?k=the+elephant+in+the+ro
2 responses to “The Elephant in the Room: Who takes care of our kids when we are gone?”
Such an important topic. This month I am publishing a piece in the Carlat Child Psychiatry Report on supporting decision making for our adult kids with disabilities. I hope to do a podcast on it too very soon. Josh Feder, MD
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