Me, Myself, as Mommy: Planning now for my autistic child’s inevitable adulthood
From the hours of 8 a.m. to 8:30 p.m., I can’t score a snuggle from my 10-year-old. Regardless of the number on the clock, my 11-year-old and 14-year-old will not touch me with a 10-foot pole, yet I can still get a squeeze when little Bodie is tired enough. It may be a tactic to prolong the arduous task of bedtime or to read celebrity gossip from my phone as I rock him to sleep, but it’s a price worth paying. He is the only one left that reminds me of the sweet, quiet moments I had with our babies.
It’s in those quiet moments, looking down at his shaggy hair, feeling his soft breath on my hand, warm from the mixture of his body and blanket, I worry about his future. When children deal with the day-to-day struggles of growing up in “Mad Max,” we worry. Will today be the day someone asks for a naked picture? Will they experience the eventual disappointment of rejection at the school dance? It’s dreadful growing up, and being the parent, I would contend, is far worse. Toss into the mix a disability — that worry has the force of hurricane winds. It knocks out the air and replaces it with traumatic thoughts. With grief.
It wasn’t until recently I started to think about Bodie’s life as he nears adulthood. His school assists him, makes allowances and sets Bodie up for success. His teacher somehow finds Bodie’s refusal to accomplish some tasks charming. Grown-up life doesn’t allow for this — there’s a reason the idioms dog-eat-dog and rat race exist. Those are not games set up for our adults with disabilities. The system is not kind to anyone, let alone our most vulnerable. What options are out there to keep these people, people we love and care about, from being tossed aside because they are vulnerable?
People like Jennie Dopp dedicate their time to helping mothers with these same concerns navigate an unfriendly system. Dopp works at the Utah Parent Center (UPC), an invaluable resource for families hoping their children with a disability can lead full, productive lives. “Utah Parent Center is bringing hope, opening doors and elevating inclusion. Inclusion is full, active participation in the community. We want these people to make decisions and feel empowered,” says Dopp.
A key to this empowerment is a program offered by UPC called Transition University (TU). It’s a complex program only because of the subject matter, but UPC has made it user-friendly so as not to overwhelm people constantly in high gear. Dopp explains, “Transition University gives families a lifeline, putting together all the pieces you need to know and might not have time to research.” Scrolling through TU, I find every level of adult life being addressed, which makes sense as volunteers and employees at the Utah Parent Center have firsthand knowledge of what it’s like raising a child with a disability. All are either in the early stages of parenthood or celebrating their child’s graduation from high school like Dopp. As she puts it, “We walk the walk.”
Topics include citizenship and advocacy, where the youth learn about their disability rights, how to advocate for themselves and how to vote. Daily Life, Community Living, Safety and Security, Social and Spiritual, and Healthy Living are all sections that make up Transition University. These sections address issues that make up life so families can begin planning and preparing for the future. Planning is certainly what it will take as we watch our youth grow. I’ve previously written about the statistics of children diagnosed with autism and other disabilities on an annual basis. The numbers are staggering; those numbers will grow up and be your neighbor, so putting in safety nets will keep society progressing. According to Dopp, over 4,000 people are on a waiting list for Social Security, with it taking years to be accepted. Now is the time for families to start applying and TU offers advice on those first steps.
In a promotional video for Transition University, it says, “We hope these learning modules inspire you with new ideas about how your family member with disabilities can create the life he/she dreams of.” The dreams of a person with a disability can be reached when families are given the knowledge they need to help direct their loved one toward the goal. When Bodie was initially diagnosed with autism spectrum disorder, I was given information for the Utah Parent Center. They were my first call, not only for direction, but as a step toward recognition of my and my husband’s new reality. UPC loaded me up with information, they armed me with the knowledge of Bodie’s rights and they helped me feel not alone. UPC and Transition University reminded me so many have come before, and they have done the work so Bodie can get to where he dreams to go.
Transition University is free with a group meeting the second Tuesday of every month on Zoom to discuss the topics we need to be aware of to set our kiddos up for success. TU will meet on June 13 to discuss employment, including vocational rehabilitation, developing hard and soft skills, internships and volunteer work. There’s also a section on something called an ABLE Account. I know next to nothing about them, but talking to Dopp, it’s clear I need to.
It’s so easy to jump ahead, to fast forward to the future in our minds. It’s even easier to forget the future is coming whether I ignore it or not. It’s our child who will suffer the consequences if we choose to be the grasshopper over the ant. I choose the ant, but in those moments where I’m not left to gather knowledge and hoard worry — I will snuggle my son, I will marinate in the quiet moments. It will be winter soon.
Meg Sanders worked in broadcast journalism for over a decade but has since turned her life around to stay closer to home in Ogden. Her three children keep her indentured as a taxi driver, stylist and sanitation worker. In her free time, she likes to read, write, lift weights and go to concerts with her husband of 17 years.