Five Parents of Children With Autism Share Stories and Insights on Life in 2020
Say it with me, “2020 has been hard.” It has, and it’s good to acknowledge that truth — especially for autistic children and their parents. As the new year approaches, it’s important to not forget this historic year and tuck it in a closet like it never happened, but to take the hardships and unforeseen beautiful moments, reflect on them, and step forward into the new year with a sense of peace and readiness.
From Alabama to Essex, meet five parents of autism households from across the country and across the pond as they share their perspectives and stories from life with their kids in the last year, as well as some of the wisdom they’re taking into the new year.
- Out of Birmingham, Alabama, dedicated Stay-at-Home-mother, Jennifer Cuberson, raises her 18-month-old twins, a 4-year-old son and a 9-year-old autistic daughter, Kinley.
- In Louisville, Kentucky, award-winning screen actor, producer and father, John Scott Wells, lives with his 11-year-old daughter and 5-year-old autistic son, Tristan.
- In the “Texas Midwest,” also known as Abilene, Texas, writer and mom, Tiffany Hammond, who has autism herself, raises her two sons, Aidan and Josiah (Jojo), ages 13 and 11.
- In Philadelphia, Pennsylvania, Fred Marvel, father and owner of the podcast “The Spectrum Dad,” navigates parenthood of his newly diagnosed son, Aleks, 11, and two neurotypical sons ages 7 and 3.
- Overseas in Burnham-on-Crouch, Essex, England, award-winning blogger, James Hunt, of “Stories About Autism” raises his two incredible, autistic sons, 12-year-old Jude and 9-year-old Tommy.
If you are part of an autism household yourself, I hope you find helpful insights and a sense of camaraderie, as well as feel seen and understood. For other readers, may you apply the wisdom of Atticus Finch from Harper Lee’s “To Kill A Mockingbird” and, “climb into [their] skin and walk around in it,” knowing that understanding leads to love and gaining a different perspective is a gift.
What were your concerns for your autistic child(ren) when the pandemic initially hit and Stay-at-Home orders were issued?
Jennifer Culberson: This has been the biggest transition and change of Kinley’s life. Of course I was concerned for my other three children too, but as a special needs mother we do a lot of internal fighting for our children with different needs. A whirlwind of worries filled my headspace, from school, to social practice, to transitions in and out of grocery stores, to her everyday behavior and emotions that could inhibit her from enjoying being a kid.
Twenty-twenty has proven to me simply that we can do this. We can take it day by day, adapt, learn, grow and progress to endure and overcome together. And we can do this because we have to. If you love your child as I love mine, there’s no other option.John Scott Wells
Tiffany Hammond: My boys are big on routine and schedules. They are less anxious when they know what is coming and when. The suspension of their services was something they didn’t adjust to well at all. They were used to therapy fitting into their schedule and now we were trying to figure out what to put in its place and get them used to that new normal. Just as they were getting used to no therapy, therapy for Aidan went to a Zoom format and Jojo’s opened back up with restrictions (parents had to drop them off in the front, and masks at all times). Jojo was scarred of COVID-19 and catching it so it was difficult to get him to want to start therapy back up. We put his services on hold until we eventually withdrew him. Aidan did not do well with Zoom therapy. He works better with someone right there with him, not over a screen. We could not make their therapies work. That was our biggest concern, the disruption in their routines. Routines we worked so hard to establish. And because of the pandemic, their schedules were off and it took them (and us) a long time to recover. We are still recovering and trying to adjust to this new normal.
Fred Marvel: We were actually in the middle of the diagnosis process when the stay-at-home order was issued. Our son was diagnosed with ADHD and sensory processing disorder when he was 3 years old. As he got older, we noticed more and more issues that led us to believe he was on the spectrum. My wife and I completed our interview portion of the ADOS testing and we had our son’s portion scheduled. The stay-at-home order was issued before that could be completed. Our biggest concern was that our son needed additional support and therapy, but because of the lockdown, those services would not be provided.
What extra measures or familial-shifts had to occur to help your child(ren) on the autism spectrum adjust?
Culberson: At the time, we were meeting with her psychologist every two weeks. We changed these to virtual calls so Kinley could get used to communicating with others in this way. The psychologist was a lifesaver in guiding us as parents to prepare Kinley for “life through a pandemic.” She sent social [media] stories for Kinley about the virus itself and what to expect socially. She helped set up new reward systems to motivate Kinley to learn new skills for staying calm and using her words when her emotions heightened. She even offered a special scholarship for a virtual social group with other kids on the spectrum to keep them engaged and learning important tools to navigate feelings. Secondly, we withdrew Kinley from public school in the summer and began homeschooling. We knew virtual learning wasn’t easy for her. She is exceeding my expectations academically and reading well beyond first grade!
Hammond: We had to take a lot of breaks. We usually added breaks to our days and into our schedules to help us deal with burnout and to gather ourselves. When our entire schedule went south because of the pandemic we had a lot of meltdowns, all three of us. We added more breaks and more time to spend with ourselves. This took away from other activities and schooling we had planned throughout the day but they were necessary. In the beginning of the stay-at-home orders, I had to “pretend” we were keeping our schedule in some way. If there was something that involved us leaving the house that we could no longer do, I would still leave the house at that time but we would just drive around or go to a park for that designated period of time. This helped to keep the boys on track some.
...our families, who can already feel quite isolated from society, have felt even more so this year. That isolation that you experienced, not being able to see your friends and family, not being able to go to the cinema, restaurants, or parties, is something that many families like ours live with every day.James Hunt
John Scott Wells: We had to adjust most every facet of our lives. Our jobs are all considered essential, and with Tristan now being home all day, every day, the need for child care became a huge strain. I think a lot of people don’t realize how difficult it is to find affordable child care for kids with special needs. You can’t just call any baby sitter. They’re not equipped to understand or deal with his needs, behavior, or his unusual communication methods. We’ve had to rely heavily on a lot of help from close family, which has been exhausting for all of us. That all also comes with the extra stress and worry of bringing home or spreading the virus to grandparents, so we’ve had to be extremely cautious.
What was unexpected regarding what you saw and experienced with your child on the autism spectrum during the ongoing pandemic?
Culberson: I’d say that the hardest yet most rewarding thing we experienced during the pandemic was the ability to manage her anti-anxiety medication dosage closely. When Kinley had a severe adverse reaction on a slight dosage increase, we picked up on it almost immediately in our home. I do not believe we would have caught this as quickly if she were in school. She experienced hallucinations and homicidal thoughts. I am so thankful we were able to watch her closely and take the immediate measures with the psychiatrist to come off of that medication safely and effectively. The rewarding part is so pleasantly surprising! Kinley was able to come off of this medication and has been medication-free for the first time in one-and-a-half years! We have seen her anxiety almost completely disappear being at home full time.
Hammond: I didn’t expect the pandemic to touch my family as hard as it did because I assumed because we were already homebound most days it wouldn’t affect us too much. I was shocked at how impacted our family was by this. We homeschool. One of our children does therapy at home. We spend most of our time at home — how was it that we weren’t doing well with stay-at-home orders and the pandemic in general? My stress levels were high. I had more panic attacks every single time I went to the store. I worried that my husband, who is a warden in a prison, would bring COVID-19 home. My youngest worried about COVID-19 all the time, to the point that it was an obsession. He was scarred all the time. But he was also so very tired of being in the house so much. We homeschooled [before], but the world was our classroom and we went out into the community, and to parks, and museums, etc. Now, we go nowhere, and that is taking its toll on the boys. Aidan is so tired of being at home as well. He is always wanting to leave. He wants to leave far more than he has wanted to ever. He waits by the door several times a day. He will bring me my keys and purse to let me know we should leave the house.
Marvel: The most unexpected thing that we noticed was how much more sensitive our son was because of everything around him. Our son is noise sensitive and he gets overwhelmed by crowds. The lockdown forced us to spend a lot of time indoors. That means he was not in school, on the school bus or with his Boy Scouts group. That also means he was not exposed to the noises, sounds and smells that go along with those daily experiences. This came to a head when we went on vacation to the beach in August. Our son spent most of his time in the hammock swing on the porch. The beach was too much to handle. New sights and sounds and smells were too much to handle. It took most of the week before he could tolerate things like going to the arcade or miniature golf. Thankfully we found a small water park that he really enjoyed.
What would you like parents of children who are neurotypical to know about autism and the pandemic, if anything?
James Hunt: Just that our families, who can already feel quite isolated from society, have felt even more so this year. That isolation that you experienced, not being able to see your friends and family, not being able to go to the cinema, restaurants, or parties, is something that many families like ours live with every day.
Wells: I think most of us don’t talk about it with other parents, maybe because we don’t want to sound like we’re complaining, or maybe it’s just something that’s difficult for others to relate to, but we’re struggling. Every single day we’re struggling with and for our little ones. My son is a good boy, and so very sweet, but he’s wired differently than a neurotypical child. All of this, the craziness of the world around us this year, it affects him differently. He processes it differently, and it takes a very different kind of toll on him. We’re struggling to understand, communicate with, and cope with our children every single day.
I cannot go into the new year, or any day really, with a bad attitude. A change in perspective can change so much.Tiffany Hammond
Please talk about the positive things you found during the pandemic, if anything:
Hammond: I was able to connect more with my children. We had to find unique ways to make life with this pandemic work. This meant that we had to get creative with incorporating new schedules and routines and this meant that we had to “study” our boys more to learn the ways doing this would work and what wouldn’t. In the process, we learned so many things about the boys. We grew closer to them because we were more tuned into them. This pandemic has taught my husband and I that life is so precious and short. We have to make the most of the time we have with everyone that we love. And that meant that we couldn’t spend so much time “working” our boys to the ground with school and therapy. These are things they need for the life ahead but they also need play, time with mom and dad, time to themselves, etc. Those things matter too.
Hunt: Even though there were periods that were very challenging, the amount of extra time I got to spend with my boys has brought us closer than ever before. I feel like our connection is deeper and we understand each other much more.
Marvel: The best part of the pandemic was seeing our son’s relationship with his younger brother improve. We have three boys (ages 11, 7 and 3). Our oldest is on the spectrum and he always had a hard time relating with our middle son. Now that our middle guy is getting older, he has his own personality, likes and dislikes. They don’t usually match up with our oldest son’s limited set of interests. But after being together practically 24/7 for the last eight months, our sons noticed they had a lot more in common than they realized before.
What will you take with you as an autism parent into 2021? What would you like other autism parents to know?
Hammond: I am taking a whole lot of patience with me into the new year. And because of my patience, I have grown so much as a parent and advocate. This year has been hard, but I have done my best to stay positive. I cannot go into the new year, or any day really, with a bad attitude. A change in perspective can change so much.
Hunt: I’ll take with me the knowledge that we’re more resilient than we give ourselves credit for. We’ve coped with extremely challenging circumstances and found a way to get through it. And if you’re ever feeling isolated and alone, reach out online. Community has never been more important, and thanks to social media and video calls, there’s so many ways that we can speak with other families who just get what life can be like. We don’t have to be alone.
Wells: Every step of being an autism parent is unpredictable. And we’re treading into a year of its own unpredictability. Twenty-twenty has proven to me simply that we can do this. We can take it day by day, adapt, learn, grow and progress to endure and overcome together. And we can do this because we have to. If you love your child as I love mine, there’s no other option.
