Jody Guiles forges her own path to independence and recovery

When Jody Guiles walks into a room, she lights it up with her smile. She loves to socialize and be involved with people.

“I try to be involved any way I can,” she says about her volunteer work and peer support classes she is currently taking. “I started taking classes at Recovery Academy with Mike Roaleen, which I absolutely love.”

This wasn’t always the case with Jody. The young, twenty-something Grand Rapids resident – who receives supports and services for both a mental illness and a developmental disability – once lived a childhood and adolescence of introversion and solitude.

“In high school I had no friends. I didn’t learn how to drive, so I rode the school bus all the way up through graduation,” she relates. “I was quiet and shy in high school.”

Now, as a young adult leading an independent lifestyle, sometimes it is hard for Jody to imagine she was once that quiet girl who lived a life within the structure of a group home. During that time, she often felt she would be there for the rest of her life.

“I never thought my case would ever be closed. I never dreamed of that,” she says. “Now I’m just case managed through Thresholds, which has been an amazing accomplishment.”

Growing up, Jody felt slightly out of place. Social activities were often elusive. In contrast, her brothers were very outgoing and involved with sports.

“Me, I was laid back. I could sit on the couch for hours.”

Although Jody advanced academically in school (she studied senior-level U.S. Government as a high-school junior) her illness and disability lead to struggles with friends and family.

“My biological dad, he didn’t think I had a mental illness and he didn’t accept me,” she relates. “Because of that, growing up I always knew somehow I was different. In elementary school I was always in the resource room. In junior high I was always in special education classes.”

It was after she graduated from high school that Jody began her residence within group homes and at times was hospitalized.

“When I graduated high school, I had to go on disability because I had bi-polar depression. I had to be in a facility because of that.”

Jody was in several different homes in the Grand Rapids area. She was very uncomfortable in her last group home and at times felt obligated to assist in the care of the other residents. Jody also spent many days and nights alone in her room, crying by herself in solitude. Luckily, her mother called one day. She soon came and took Jody out of the home.

“My mom called me and asked, ‘Do you want to live there?’ And I said no.”

After some time, mother and daughter began to look into other homes, but by then Jody had already experienced the feeling of independence and positive social interaction.

“We looked at one of the homes. I liked it, but I had the opportunity to stay for a weekend with my mom’s friend,” Jody relates. “She was known for taking in foster kids and she was really sweet. I loved her. It was an immediate bond. She was like a second mom to me.”

Her “second mom,” Liz, took Jody under her wing. Jody credits Liz for being the one to bring her out of her shell, especially when she had to go through one particularly difficult challenge in life.

“Some months after I graduated high school, I found out that I had to have all my teeth removed. That was a huge deal for me.”

Jody had to have dentures made that were uncomfortable for her to wear. It soon became difficult for her to go to a dentist office.

“I guess moving in with Liz was what brought me out of my shell,” she explains. “She was more than just a staff person. She was there for me and took me around to different dentists and found one that finally got my dentures to fit.”

Jody continues, “I was at the point where I was scared to go to the dentist. I would walk into the dentist office and would have a panic attack and anxiety attack at the same moment. But when she took me to this one particular office, I was all smiles. The one she took me to was the greatest dentist in the world. He deals with people with disabilities.”

Jody made it through her life’s challenge with the support of Liz.

“She was there for me when I needed her,” Jody explains. “If I had a question, I would feel comfortable to ask it. If I wanted to bake, she let me bake. I volunteered for so many events at Hope Network with Liz.”

Jody’s ambitious volunteering also lead to part-time employment through Hope Network.

“Walt Geluso, the head of the living skills program, needed somebody to sort paychecks. I did that every other Thursday. I got paid to sort consumer checks. I really loved it. It was awesome.”

She also had the experience of giving back and helping others. One particular time holds special significance for Jody.

“I volunteered for Hope Network on the northwest side,” she explains. “That was fun. I actually got a consumer to say my name. At first, she could only say things like ‘book’ or ‘hook,’ but then she actually said my name. That put the biggest smile on my face.”

Jody eventually settled on a job she could excel at and also give her personal satisfaction.

“When I grew up, my mom worked in day care so I was around it all the time,” she recalls. “I started babysitting for my neighbors. They have a three-year-old and a nine-year-old. That’s my job now. I do that two days a week. It’s trying, but it’s a good trying. I like it.”

Recently, Jody has been involved in a relationship and now has an apartment of her own. These have been giant steps for her and have brought her far from the shy little girl that once spent most of her time alone.

She explains, “I am independent. I depend on me. And now, my boyfriend and I have been in a relationship for over a year. So I am cheery, bright, and open now, and am not shy and in a shell anymore.”

Jody Guiles now finds inspiration in all avenues of her life. This past fall, she volunteered to assist at the Disability Awareness Day conference (see page 6) presented by Disability Advocates of Kent County. Jody became very inspired after hearing the presentations of several individuals like herself that have taken control of their lives through independence and self-determination.

“When I heard people talk about their lives, it made me want to get up and talk about mine,” she says.

Can we expect to see Jody speaking at the podium of a great lecture hall, inspiring others with own story one day? Only time will tell. Regardless, one thing is certain; Jody is well on her way to achieving a brighter future.

“You can’t just sit around and wait for your life to change. It’s not going to change. If you don’t get up and try to make your life change, it won’t. If you want a difference in your life, you have to do it,” she proclaims.

“I don’t know where my life path will lead. But whatever I do, I know it will be huge.”

Family matters for Linda and Joel Bentzen, mother and son.

Twenty-nine year old Joel Bentzen offers a batch of cookies he just made, grinning slightly as he passes the container over the kitchen table at his Kentwood residence. Although Joel has lived with autism since he was at least three, it is obvious he cannot contain his pride. Nor can his mother, Linda Bentzen.

"We don't know how he does it, but he makes cookies from scratch," she says. "Back when he was ten or eleven, he started making brownies and then cookies. I would measure out the ingredients and he would stir it, put it on the pan and bake it. One time I got busy and didn't have the ingredients ready for him, so he made cookies without me. Even if I didn't have it set up ahead, he made cookies anyway and they always turned out!"

Joel and his mother don't take these experiences lightly and believe they offer unique opportunities for Joel to learn and grow. 

"Everything he does increases his understanding of how the world works and what is going on," she says.

Many individuals, like Joel, who has a developmental disability, benefit from some type of support. Fortunately, Joel has also received the unconditional support of his family.

"You need to change your expectations when you realize your child has special needs," says Linda. “We wanted him to do all that he was capable of doing."

Linda and her husband, Bill, kept Joel in school until he was 25, feeling that in school he would learn what he could and have a wide variety of experiences which would help develop work skills that would eventually benefit him later in life.

"When he got done with school, it was obvious he was going to need someone to keep him supervised," says Linda. "He can't really handle money. He can't make a phone call independently. There are lots of survival skills he doesn't have."

Despite these barriers, Linda hoped that Joel would do something where he was truly contributing. At first, he worked at a supervised assembly line job with other individuals that have a developmental disability. Although Joel enjoyed the work, it was not an active, social environment. It became very repetitive.

"For some people, doing the same thing day in and day out is fine. Sometimes it brings a sense of security. But for Joel, I don't think so," says Linda. "He got 'creative' in assembling the equipment and they said what he needed to do was skill building."

Eventually Linda met a speech pathologist and told her of Joel's story and the various activities he participates in at home. Joel has different chores written out on cards with visual aids to assist him. On the cards are items such as: do laundry, change bed, walk on treadmill, vacuum, dust, empty and load dishwasher. This impressed the speech pathologist. Because of her background in education, she came up with an idea that may possibly become Joel. 

"I've always appreciated special-education teachers," says Linda. "They are just excellent people. That field draws wonderful people of high-quality."

The speech pathologist happened to work at a school and thought the school's custodian could use some help. She would check on this and let Linda know.  

"A few weeks later," explains Linda, "we were meeting with the principal, the custodian, and the speech pathologist and talking about the possibility of Joel going there to work," says Linda.

The custodian was willing to take Joel on. The school was a large building and quite old. There was certainly plenty of work to be done.

Joel's supports coordinator designed an independent employment format based on self-directed employment. Although Linda admits it was a mound of paperwork, Joel would benefit from having a job coach who would work closely with the custodian. The job coach would keep track of what tasks Joel should be completing daily and the goals would be reviewed annually. It even worked out that Joel's brother was able to be the job coach. 

At the time, there were things Linda was not sure about. Although she was confident Joel could learn, she was concerned that complex tasks may be too much for him. The custodian, however, was quite confident in Joel's potential. Fortunately the custodian's intuition was correct. Joel has learned to wipe tables, sweep and mop floors, and empty trash. 

"Last summer he even painted the restrooms of the school," explains Linda. "The custodian asked, 'Do you think he would want to do some painting? He can start with the floor.' "

Joel completed his painting task and learned the satisfaction of a job well done. 

"None of this would have been available to him if the custodian and school administration had not been willing to let Joel try,” says Linda. “This work gives him the opportunity to use skills he already had and to develop new ones, like being on time and checking his work.”

When Joel arrives at the school, he has a clipboard that contains a checklist of tasks for him to complete. He uses visual instructions, hoping it will eventually phase out the need for a job coach. 

"I like it," says Joel about working at the school. "I like that school." 

At the beginning and end of Joel's workday, he signs in or out. By doing this, the school secretary always knows when he is in the building. Linda appreciates this attention. It's a safe environment for him. 

Joel has a good relationship with the school staff. He proudly wears a name tag given to him that indicates “assistant custodian.” People know he belongs there and is a part of the school. He is treated the same as any staff member. When the school had its annual staff dinner, Joel was invited to attend. Later, he shows off an expensive pen set that was given to him as a Christmas gift.

"The school principal once said the school values diversity," says Linda. "He felt that in a way, Joel represents diversity." 

Linda, although noticeably grateful that the school has given Joel work, acknowledges the challenges for families with children that have special needs and admits that at first, she wasn’t very familiar with the system of care, how it is funded, and the different providers available to individuals like Joel. It is often to the benefit of families and caregivers to become familiar with these details.

"I didn't know what network180 was, versus what Hope Network was, versus Thresholds," she admits. "I think the system is full of well-meaning people, but I do think if the support coordinator hadn't found a way for this to work, what would we have done?" she says.  

Regardless, Linda is now at a stage of contentment for her son and hopes Joel's work situation continues. 

"I'm grateful that he is as capable as he is and that he is as happy as he is," she says. “He is purposeful. He has a reason to get up, and work he is happy to do. This is what we hoped for! I am very happy. Joel could do this the rest of his life."