A heartbreaking story of personal regression and the journey to return
Something was happening to my stepdaughter, Ayla, in the fall of 2020. I had been a part of her life since she was six. Suddenly at 30, this previously confident and imaginative spirit, who was mentally operating at around age 17, could no longer complete tasks on her chore board. She could not complete sentences. Her stammering, which had been intermittent, was constant. She would ‘freeze’ in place, staring into space. When she would walk, it would be like a robot- backing up, making squares in the kitchen with her steps to move only a few feet to the sink or refrigerator. She seemed agitated, then somber. She lost interest in social media, even her phone. Showers, where she had been completely independent, she could no longer complete on her own. Once a spry and energetic swimmer, placing at Special Olympic events, she feared water touching her.
By the spring of 2021, her personality morphed into one of defiance and tantrums. She lost awareness of time. In washing her hands, she would run the sink until water spilled over, ruining cabinets below. Her hygiene worsened. Shampoo and hand soap warning labels frightened her. Incontinence and fogginess emerged. She began lying about completing her morning basics. She used to take pride in walking our greyhounds one at a time. She could no longer walk them alone. Eating meals took two times longer. When taking pills or drinking water, Ayla would make choking sounds until we looked at her. Ayla reacted the opposite of what was asked, and skills she had as a young girl were gone. Ayla was fast becoming an invalid.
Her mom Karen, her father Ray and I continually searched for reasons why this had happened, and so quickly. Ayla’s mom Karen shared her fear that had crossed our minds, “Did Ayla have early dementia?” Tests, evaluations, psychiatry, and psychology appointments were made. Ayla’s social worker, Stephanie, reassured us, no dementia. Behavioral and chemical were the next considerations. Ayla received medications for anti-depressant and anti-anxiety based on what they observed in sessions and from our feedback.
During one conversation with Ayla, I gained a little clue as to her regression. “What do you feel when you are doing these things?” I asked.
Ayla's story will make you shudder, cry, and believe. You'll be cheering her on every day. Ayla's story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
“Feath (Ayla’s endearing name for me, short for Feather), I feel like I’m in a storm and can’t get to you or Dad. I can’t turn off the storm.” Her issues persisted. Ayla spent time with Ray and me in Florida, and in Virginia with her mom and stepdad. At one of her psychiatrist sessions, she repeated the same sentence: “I’m in a storm.” As the months and year passed, we shared experiences with Ayla in each household. Ray noticed that Ayla would turn her behaviors on and off. In public, at restaurants and shops, she would wave to people, smile, say hello without stammering. We would get home, and she would robot, stammer, and act defiant.
More than anything, parents wish to see their children develop into their best possible selves. To tap into their truest desires… to be happy. Ayla had lost her independence, her ability to contribute to her family and others. Covid shut the world down. And when the world came out of hiding, the post-Covid world did not include the opportunities that previously cultivated Ayla’s confidence. Even if those opportunities would emerge, Ayla had regressed to the point she could not take part in them.
It was now 2022, and Ayla was in full regression, acting at times like a 4-year-old. We shared these observations with her social worker, Stephanie. “I’ve known Ayla since she was very young,” Stephanie began. “Ayla has ALWAYS wanted to be independent. She has enjoyed helping the family and took pride in her jobs at Books-A-Million and Domino’s. She used to stay at home on her own after high school, prior to getting her jobs. Now, her mom is not working, Ray retired, and your career ended recently. Covid suspended Ayla’s jobs, and Special Olympics ceased due to the pandemic. All Ayla’s outlets for independence are severed.”
Ray and I realized, with Stephanie’s outside perspective, that Ayla had lost what Ayla loved most – being independent and on her own. Ayla was unable to articulate her disappointment and frustration. What she could control was getting attention, and unruly behavior was getting her plenty of attention. We shared this realization with Karen and her husband.
In the months to follow, we focused on behavior modification tactics recommended by Stephanie and others. When Ayla behaved badly, we would call her out on the action. At first, it felt harsh, to correct Ayla with every move. Initially Ayla met our ‘re-training’ with continued opposite behavior. We stayed consistent. If she could not wash her face, then she could not choose her own clothes. If she could not eat properly, she lost TV privileges. This upset Ayla because her ability to choose for herself was being threatened by her behavior.
When she returned to Karen’s house, Ayla’s bad behaviors resulted in discussions and corrective actions similar to the actions Ray and I initiated. We shared tips on what worked and what did not. We would vent to each other.
Over 2 years into this journey with Ayla, we are seeing signs of the old Ayla, the pre-Covid Ayla. We share numerous details with her doctors, therapists, and Stephanie. Friends have helped us in reestablishing acceptable behavior for Ayla. They invite us all over for meals or activities where Ayla must interact with others, both familiar and unfamiliar. Karen, Ray and I continue to help Ayla improve through increased structure, clear and simple expectations, and other tools to help modify her behavior. While there is still frustration at times, we have a plan that is working to restore Ayla.
Special Olympics has resumed. Ayla is more chipper, and more active daily. She wears an activity tracker, and competes for steps with Karen, Ray, and me. As a united front, we are challenging Ayla to restore the skills and discipline needed to hold a job again.
Recently we experienced a breakthrough moment. After a particularly tough evening, where Ayla acted out enough to earn her a ‘corner sit/time out’, she apologized for her behavior. Never had she done that! We could see our old Ayla, working through that ‘storm’. Ayla recognizes what makes her Ayla, and we are all pulling for her to make the days ahead her most joyful days.
Heather, Ayla's stepmom
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The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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