The Revolving Door: The Untold Story of Disability Support

By Christine Motokane

The Revolving Door, the Untold Story of Disability Supports is a story of a young adult woman trying to find good support people who are committed to helping her. Many leave the field because of poor pay and high stress. This is a raw honest story depicting young adults with developmental disabilities who are aging out of the system.  These adults are left alone with very little support.  Isolation is common with adults with developmental disabilities. Statistics show that in the coming years there will be a tsunami of children with autism growing up to be young adults.  Our current social welfare system is not equipped to handle this tsunami coming our way.  

The author wants to advocate for better pay and incentive for people entering the direct support professional field.  It is a MUST READ for anyone who deals with people with disabilities. 

Although the book deals with serious topics, the author imparts humor and honesty to engage with the reader.

• Language: English
• Publisher: Outskirts Press
• Release date: Feb 8, 2024
• ISBN: 9781977272294

Book preview

Chapter 1

New Town, New Anxiety

I miss San Francisco and I want to go back to California!, 24-year-old Fiona Wallace said. She was petite and had a slim build. Her calves were muscular due to all the nervous energy and jumping up and down that she liked to do when excited. Although Fiona is 24-years old, she had a more youthful appearance which made her appear younger than she really was. This was nothing new for Fiona or her parents. Diagnosed with autism at three years old, change has never been easy for her. Anxiety would take over and build up. It consumed her to the point where extreme behaviors take over and she had to let them out.

She was having a hard time adjusting to the family’s move to the small town of Oak Grove, Oregon from the hustle and bustle of San Francisco, California. Fiona’s parents, Martin and Debra wanted a slower pace of life. They felt that living in the Bay Area was getting too crazy. Martin was in the process of retiring from his high- profile job as a banker and both parents were concerned with Fiona adjusting to small town rural living. There was concern for finding support for her in their new town because resources were more limited.

What do you miss about San Francisco? Debra asked. She was a short, petite woman with brown hair and a soft, gentle appearance with kind brown eyes and a calming voice and demeanor.

Fiona, still on edge, continued her rocking back and forth.

I miss the variety of stores and my weekly trips to the mall. But mostly, I miss my job at Hal’s grocery store, she answered.

Do you miss the people you worked with because they were especially nice to you? Debra asked.

Hal’s was great because everyone there was an artist, a musician, or some sort of creative type and didn’t really fit in other places, Fiona answered. They embraced me too since I didn’t fit in either because of my autism. Working at a small family-owned market made me feel like I was part of their family.

Debra sighed. Sometimes she wished she had more children so Fiona did not feel so alone.

Mom, you know what I miss the most about San Francisco? Fiona asked. Debra smiled and shrugged.

Kelly!` Fiona continued. She was the best companion I ever had. Our weekly outings were so much fun.

It was something her mother arranged for her after a disastrous attempt at community college. Fiona struggled with the rigid schedules and work she had to do for each class and ended up having a nervous breakdown from the demands of keeping up with her coursework and not having enough support to help her. As a result, Fiona spent most of her time at home battling depression and anxiety. Debra thought having someone to take her on community outings would ease her spirits and get her out of the house. Kelly was highly recommended, and she was a good match for Fiona. They had a lot in common.

I know that you miss Kelly but you can always contact her, Debra said trying to offer her the best ‘motherly’ advice she could.

Fiona’s brain was not receptive to Debra’s advice right now. Instead it twisted the sound advice of Debra’s message into something irrational that would put Fiona into a further stage of angst.

Fiona felt her anxiety level increasing. Her heart was racing. Her breathing became rapid. She was sweating and her hands were trembling. She was close to tears.

It’s not the same and I’ll never find someone like Kelly here, she said, her voice wavered as she fought to hold back the tears. Fiona jumped topics like she sometimes does when she is anxious. In this case, the subject jumped from missing Kelly to finding another support companion in Oak Grove. This often made it hard for others to follow her conversations and, as a result, they do not know how best to respond to her.

Fiona, sweetie, Debra began, we’ll write an ad and find someone just as great as Kelly. It just might take some time to find someone.

Martin, who had been mostly quiet at this point, tried to analyze the dialogue that had been going on between Debra and Fiona. He was a tall, scrappy guy with peppered gray and black hair. He was a little bit heavier set and had a more serious appearance. He had bushy eyebrows and stubble on his chin. He attempted his best to offer some advice to help diffuse the situation.

Fiona, remember how a few years ago it was hard to find people to be your companion? Fiona did not respond. After a short pause, he continued, Well you eventually found Kelly.

Fiona did not take Martin’s comments very well and it caused her to be even more anxious. She was not thinking clearly at this point. Her rational thinking seemed to return when talking with her mom, but now was being completely overrun by her emotional anxiousness as her dad tried desperately to help.

I DON’T DESERVE TO HAVE SUPPORT! Fiona screamed, causing both her parents to look startled and confused as Fiona jumped topics again and was visibly upset.

Fiona, what does this have to do with the discussion of finding another companion? I don’t understand. Her mom said, trying to understand but Fiona obviously was not processing what her mom just said and was clearly in distress.

Unable to effectively communicate her thoughts, Fiona yelled at the top of her lungs.

YOU DON’T GET IT!

At this point Martin was unsure how to help his daughter and turned to his wife to help diffuse the situation. Martin’s approach to solving problems was to try to get Fiona to see the rational side of things which tended to not help someone like Fiona. It was apparent that she sometimes had no control over the times when her emotional side would take over and he does not take that into account. This was due to her having both autism and an anxiety disorder. When Fiona was not receptive to Martin’s attempts at trying to help, it set up a roadblock in their father-daughter relationship. In contrast, Debra always knew how to bring Fiona back into a state of calm. She held out her arms toward Fiona, palms up.

Fiona, why don’t we try to use the deep breathing techniques that Kate taught you. We can do it together, Debra said, referring to Fiona’s ex-behavioral therapist. Fiona calmed a little and nodded in agreement.¹

Okay, let’s start, Debra said calmly, smiling at Fiona. Fiona nodded again and both she and Debra took in one deep breath together. After three consecutive times of doing the deep breathing technique, Debra continued talking in a soothing tone reassuring her daughter as her gentle, motherly brown eyes tried to meet Fiona’s worried look. Don’t worry, she said, we’ll find someone that will be a good fit.

Although Fiona was still unsure, she started to feel calmer after hearing her mother’s voice. All the anxiety, spinning her worry about finding a new support person caused Fiona to feel exhausted.

"I’m going downstairs and watch Frozen," she said.

Frozen was one of Fiona’s favorite movies. It was one of her coping strategies that she resorted to when going through a hard time. When Fiona was in middle and high school, she had a huge obsession with Disney princesses. However, her therapists told her parents to discourage interests that are not considered age appropriate. This was an attempt to get Fiona to fit in better with her peers. At first, both Debra and Martin followed the advice of the professionals as they slowly tried to introduce Fiona to interests like fashion and music that most of her peers the same age would enjoy. As the years went on, both parents realized the more they pushed Fiona to be age appropriate, the more pushback they would receive. They figured it would be easier and cause less anxiety to occur, to let Fiona enjoy what made her happy. By letting Fiona choose her own interests and hobbies, they were promoting her independence. They believed this to be more important than making her appear normal.

Debra watched as Fiona headed down the stairs to the lower floor where her bedroom was located. Fiona loved the fact that her bedroom was on a separate floor from her parents. It was like having her own apartment. There was a second bedroom next to hers where guests could stay, and a small sitting room with a couch, an oversized chair, a trampoline, a medium-sized TV, and a small dorm fridge. It was her sanctuary. She stood in the middle of the room, gazing all around. It had become her place to get away from the world that seemed so loud, so misunderstood, and so unforgiving.

Upstairs, Martin sighed loudly.

I feel so defeated at not being able to talk to my own daughter. He looked sadly at Debra, You must have some secret power helping Fiona through these tough moments. She seems to respond much better to you.

Debra hesitated before responding,

Believe me, there are times when I feel defeated or unsure if I’m actually helping or just making things ten times worse. It’s just many years of practice being a stay-at-home mom that makes me more in tune to what Fiona needs.

I just feel lost sometimes at how to help her, Martin said. "It makes