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Parents of adult autistic children face hard questions about their futures

Commonwealth Journal - 1/9/2022

Jan. 7—As the parent of an adult child with autism, there are certain hard questions you have to ask yourself. How do care for them? How do I keep them engaged and give them a meaningful life? And, perhaps, the hardest one of all, what happens to them after I pass away?

These are questions facing two women who also happen to be sisters: Donna Littrell and Melissa Keeney.

Donna is the mother of twins who are 30 years old, Nicholas and Lucas Littrell. Melissa is the mother of 20-year-old Seth Keeney. And both mothers, when interviewed independently, echoed many of the same concerns. There aren't any programs in this area that help keep adults with more severe autism engaged with the community, and there are precious few job opportunities out there for them.

"Most people, their kids graduate and they go to college. And then, you're like, 'This is the rest of my life, being a caregiver,'" Littrell said.

"Autism doesn't end when they age out of school," she continued. "It's been compared to falling off a cliff. What do we do now that they're adults? There wasn't anything, and there still isn't. If they live at home with parents, there's just nothing for them. It's all on our shoulders to give them a meaningful life, and we're trying to do that through employment and continuing education."

The good news is that Donna and Melissa have each others' backs, as does the rest of the family. Both are single mothers, which makes the situation more difficult, but they compensate by joining together, going on group trips and taking care of one another.

The family's adventure with autism began in the early 90s as Donna became the proud mother of her twin boys. They were born premature in 1991 and had to spend several weeks in the NICU at the University of Kentucky.

"I started noticing differences around 7 or 8 months [old], only because I had another son," Donna said, referring to son Gage, who was 11 months old when the twins were born (Donna points out that for six weeks each year, she has "triplets" since all three boys are the same age).

"I had [Gage], and I noticed they didn't seem to act like he did. ... I noticed I was trying to take a picture of Lucas one day. I called to him to look at me, and he wouldn't look at me. It was like he was deaf."

Before that, the twins would look up or hold their hands up to her, and they had normal speech, saying words like "mamma," "dada," and "bye-bye."

"But that all went away. It's like Lucas was looking through me or past me. He would not connect with me."

There were even questions about whether the twins were actually deaf, but Donna said she knew they couldn't be, because they could be in the back bedroom and would come running if they heard the music from "Land Before Time" come on the television.

She would go to UK for checkups with them, and she said she would tell the doctors that something was wrong, but they would tell her it was just because they were boys and they were twins.

But somehow, she knew it was something closer to autism.

"I don't know why I knew [it was] autism, but I had watched the movie "Rain Man," and something about that movie just kept sticking in my head when I would watch them. Then, I might have had a paragraph in one of my psych classes in college about autism. Maybe that's how I sort of kept thinking about autism. Back then, we didn't have the internet. We didn't have anything."

Finally, at the twins' 18-month checkup, doctors told Donna there was something different about the boys.

"They didn't want to say autism. They said PDDNOS, which stands for Persuasive Developmental Disorder, Not Otherwise Specified. The reason they didn't say autism was because they were so young, and they had never seen affection in an autistic child before. It was so rare back then."

In fact, Nicholas and Lucas were the first twins in the state of Kentucky diagnosed with autism. Donna recalls their doctor, Dr. Otto Kaak, being fascinated with them.

"He even came to our house and brought a team down here with him to Somerset to observe them, because it was so rare. They'd never seen twins with autism."

In that sense, Donna was a bit of a pioneer in learning what to do in this situation. And the road was often bumpy. There wasn't a wealth of information on the subject, with Donna saying she went to the local library and found nothing about it there. The internet wasn't widespread in the early 1990s, and there were no programs in the schools dedicated towards teaching children with that disability.

"I asked the doctor, 'What am I supposed to do now? How can I help them?' And he said, 'Just take them home and love them, and they'll probably have to be placed out of the home in about 10 years.' That was devastating to tell a mother," she said.

She was determined to help them as much as she could. She found some help and information by going to a national conference on Autism in 1994, and connected with a woman in Connecticut who helped the family build an Applied Behavioral Analysis (ABA) program for them. She moved to New Jersey, where a public school up there had a special program that catered to children like Nicholas and Lucas.

Donna said her sons learned to read and write, even before they began speaking — a skill that came when they were around 7 or 8 years old.

But, circumstances forced Donna, now a single mother, to have to move back to Somerset, and Donna said she brought a wealth of information back with her.

As such, Nick and Luke were enrolled at Oak Hill Elementary, and they got to help train the teachers there on how to help them, Donna said.

"We educated them. Everybody says Nick and Luke were their teachers," she said.

Somewhere along the line — when her sons were about 10 — her sister Melissa had her first child. Donna said she began noticing warning signs that something similar was happening to him to what happened with her twins.

"I don't know if I've ever even told her this, but I saw the symptoms in Seth before she did. ...I was worried. I had a sinking fear because I watched how he watched ceiling fans. He'd get excited over certain videos. I knew, and I was just there to support when she came to the conclusion," Donna said.

For her part, Melissa said she knew something wasn't the same about her son compared to other children.

Every child with autism is different, she points out, and autism truly is a spectrum. But Melissa said she began recognizing some of the symptoms, and she knew she had to have Seth checked out.

She said she was able to get him into First Steps, a program that helps children with developmental delays up to age 3. Seth was able to go to preschool, learned to say some words and was a loving child, making eye contact with others.

He just didn't have peer-level speech, she said.

Seth was diagnosed with autism when he was in third grade, but Melissa said she knew what that diagnosis would be before it was given to her.

At that time, there weren't many clinics or programs around Somerset for children like him, so Melissa found herself driving to Eastern Kentucky University in Richmond to get Seth speech therapy and driving to Lexington to get him occupational therapy.

"So, I was glad to see all of these clinics pop up in the last so many years for these parents that have younger children," Melissa said.

"But where we are still lacking is with our young adults with autism," she added.

Seth graduated Southwestern High School in 2019 — he was a member of the National Honor Society — and is currently taking classes part time at Somerset Community College. Seth said his current classes include Psychology, Communications and a Walking Fitness class.

His favorite subjects are art classes.

"I still like that," he said. "I just like drawing different stuff. Still life and step-by-step and everything."

Melissa said he is working on his associates in art degree at the college, but he is also very good with computers and typing, and they may look at getting Seth a data entry job.

Seth's post-graduation plans are easy to explain. "I want to work from home," he said.

Outside of school, Seth said he enjoys exercise and traveling, going on day trips with his cousins to places like Nashville, Lexington and Louisville.

While there, he said he enjoys thrift shopping.

Melissa added that he enjoys reading, so they often look for books and maps while they are out.

Three days a week, Seth is assisted by a support worker, Peyton Phelps, who not only gets him to and from class, but also takes him to lunch, where Seth can work on his communication and money skills out in public.

Phelps is also an assistant coach with the Southwestern Football team, so some days Seth goes with him to practice and will walk around the track for exercise.

Seth also enjoys talking with his cousin Nick about places they want to travel to or restaurants that are no longer in business.

Nick and Luke also have support workers — Luke's has been with him for 10 years while Nick's has been with him for five.

"I do try to keep them separated as much as possible, because they are sort of sick of each other, I think. Most twins go their own way in adulthood," Donna points out.

They are both trying to look for jobs, but are having trouble finding one, she said.

"Having a job, that's sort of your identity as an adult, if you think about it. It gives you pride. So that's my goal for them, for them, and they want that, also."

Donna and Melissa have even thought about what the three men might be able to do together, as a possible self-business, Melissa said.

Because of Seth's artistic skill, Melissa said she thinks he would be good at design.

"We could eventually maybe get a business for him. He could design the shirts, and Nick and Luke could work on printing them. That's something we've thought of."

But both she and Donna say it is a struggle to keep the grown men engaged and learning, because there are very few opportunities or programs to help adults with autism in this area.

"It's not like it's going to be cured," Donna said of Seth's autism, "and I will work till the day I die to provide a quality life for him because if I don't, nobody else will."

And that brings up the next difficult question that these women have to consider: What happens to their sons when their mothers die?

Melissa admits it's a fear, and she knows very well she could pass away before Seth does.

"My sister turned 60, and I'll be 53 this year, and you start thinking about that — probably sooner than most parents would — because you have this child that depends on you. What's going to happen? Who's going to take care of them when I pass?" Melissa said.

Seth has a younger sister, Sarah, who is currently 17. Melissa said, "I'm pretty fortunate, because I really feel like she will take him in and have him in her home,"

Still, she fears that Seth may have to go into some kind of residential program or placed in an unfamiliar home. "I would always want him to stay in his home, even if I had to turn it into a having a roommate. ... [My children] will always have a home, I will make sure of that, but that is something that you really don't want to think about it. I hope I live a long time, but that's just a thought always in the back of your head."

Donna also worries, because autism has affected her sons more harshly, and some people have a hard time understanding them when they talk.

Or, sometimes, they may not understand the danger they are in, or the way they could be taken advantage of by strangers, she said.

She has a special needs trust fund drawn up for them, because if they got money from her life insurance policy they would lose their benefits. She's identified people she trusts to take care of situations after she's gone, and has written up notebooks that describe how to take care of them.

She has Luke's and Nick's favorite foods, what their favorite shows are, how to help one of them calm down — all of it written in notebooks.

It's a system she suggests other parents adopt.

She too feels fortunate to have another child, her son Gage, and along with his wife Danielle, she feels like Nick and Luke have someone to watch over them when she's no longer able to.

"We just have to have faith, be smart about it and make preparations. Try to figure out if something happened to me tomorrow, what's going to happen to my children? Where are they going to be? I have tried to be proactive about all that."

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(c)2022 the Commonwealth Journal (Somerset, Ky.)

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