Growing up with disability: a sibling’s view

Laura and Leo tell their story

It was 1988 and after 2 weeks in the NICU, Laura was sent home with her parents, Jane and Randy who were completely unprepared on how to help their daughter. Laura was born with cerebral palsy and visual impairment. When Laura was 5 months old, a friend told them they needed to call Rainbows.

The family began receiving in home services through Rainbows’ Infant/Toddler Services program. When Laura was born, Jane was working in the Arts. “Because Rainbows was sending out therapists with Master’s degrees who could communicate in a meaningful way with Randy and me, I was intrigued,” said Jane. “When I had an opportunity to change careers, I looked in social services. I had a boss who encouraged me to go back to college. I eventually earned my master’s degree and Ph.D. in Community Psychology.”

Laura was not quite 2 years old when she started in the Early Child and Education program at the Wellesley location. When Laura started attending, she wasn’t talking much, and at first, she didn’t talk around staff or other children. Staff were surprised to learn she could talk!

“Laura was such a joy to be around,” said Lutfe Begum, Family Case Manager. “During nap time, I noticed her repeatedly moving her legs. When I asked her why she was moving her legs instead of napping, with the brightest smile on her face, she told me she was dancing with her imaginary friend. After that, I decided it was best to work on her range of motion during nap time since she was more relaxed at that time than she was at other times. It was a win-win situation to get some good range of motion exercises in as she smiled beautifully every day and danced nap time away with her imaginary friend.”

“Laura really made me realize that despite any physical limitation we may face in our lives, we can still go on living in a meaningful and fulfilling way as long as we hone in on our creativity and joy,” said Lutfe.

When Laura graduated from Pre-Kindergarten, she had developed a love for learning and was in her first wheelchair. She also had a baby brother, Leo.

“I was in the home, too, when Laura’s care workers were there,” said Leo. “I learned if the Direct Support Professional (DSP) was a good one or if someone wasn’t totally dedicated. I was part of the care giver’s engagement with the whole family. I knew what the definition of a good care worker was because I had seen it, and I understood it because I grew up with it. Unless you’ve seen it and unless you’ve lived it, it’s hard to explain.”

“Rainbows provides care not only for the person, but for the whole family,” said Leo. “Without Rainbows, my parents would have been a lot more stressed. I was able to go do all my sports and activities because my parents were able to take off with someone at home with Laura.”

Laura attended the first Camp Woodchuck at Levy Special Education Center in 1997. She spent her summers at Camp Woodchuck until she turned 18. Laura and her friends loved to sing what they called “gross songs” for the shock value and especially enjoyed when the Journey of Hope TransAmerica bicycle team would drop in for a day of activities. However, it was the staff at Rainbows who were Laura’s favorite people at Camp. Laura picked out the Direct Support Professionals she wanted for her home services. “I’m not outgoing,” said Laura. “Most of the time I lean toward the introvert, so it’s nice to have someone who is the opposite of me. I like the ones who have the most fun.”

Leo worked for Rainbows as a DSP from 2011-2016. He went to graduate school in 2015 but came back for the summer and worked at Camp as a lead. As a care giver, Leo went with his kids to youth group, sporting events and activities. He even attended their high school graduations.

“I still keep in touch with one of the kids,” said Leo. “We do video calls every month and I visit whenever I’m back in Kansas. I see the impact on the child and parents when there is someone who cares and is understanding.”

Middle School changed many things in Laura’s life. Laura began to sit in on classes outside of the Special Education program to broaden her education and experience. By the time she was in high school she was ready for Algebra and the Arts. Laura graduated from West High School and served on the committee who held their 10 Year Reunion.

Algebra remained her favorite subject in school even though it required extra work. “I would have to read and study using a 4’x6’ whiteboard and dry erase marker,” said Laura. “We would write it big and then I could work out the problems and logarithms.” She earned her Associate of Arts degree from Wichita State University in 2013.

Since January of this year, Laura attends a day program for adults with disabilities. She looks forward to going and is happy there. Her residential services provide transportation. After Adult Day Services she goes back to her independent living apartment and spends her evenings playing cards or dice games with staff and residents or watching TV. On the weekends, Laura visits her parents.

Laura qualified for a program that pays for Internet services at her apartment. She has a voice-activated Portal through Facebook and enjoys being able to video chat with her family and friends because she can do that independently. She has a tablet for games and email. Her favorite thing to do right now is Redecor, a Home Design game on the Internet. She has been playing for a year and has completed over 2,000 designs. She plays other games including bowling on her tablet. This football season she won first in her fantasy football league on one of her two teams.

Laura loves to travel and is looking forward to her first trip to New York this summer for her brother’s wedding.

Today, Leo manages and teaches an engineering program in Buffalo for kids ages 5-14 years in an afterschool and extracurricular setting. He teaches everything from making catapults, vehicles, towers, bridges, electromagnets, and robots using hands-on building, to coding and promoting critical thinking and problem solving through teamwork and solo exploration.

“I add rigor and challenges to my curriculum, teaching kids that failure is just another step in the right direction and to not fear messing up since you can learn from it,” said Leo. “Much of what I learned at Rainbows with how to de-escalate and spot stress in children before it becomes a problem has helped me teach kids in a productive way as to never get them stressed out but keep them challenged. By doing this, I keep them engaged and they get the most out of learning.”

Leo also schedules schools that want their programming, and they go to Saturday academies, community centers, daycares, charter schools, public schools, and homeschooling groups to teach, so he has his hands full getting his staff and supplies to the right places. “The impact that is made on our students is what has me going strong,” he said.

Originally planned for the summer of 2020, Leo’s wedding will now take place this summer. Leo and his fiancé, Felicia Fortunato, have taken special care to make sure Laura is a part of all the festivities. Laura will be a bridesmaid, even though she had the opportunity to walk as one of Leo’s groomsmen. “I’m excited about having both sides of our family together for the first time,” she said. Leo and Felicia have also carefully arranged the seating for the reception, putting Laura in the middle of the room and surrounding her with cousins from Mom’s and Dad’s sides.

Leo is almost 3 years younger than his sister, but she calls him her little big brother. At 6’4” he is definitely taller than Laura, but he gets his title because he has experienced more things than she has. “He can help me get through things,” said Laura. “He looks out for me.”

Laura and Leo talk at least once a week, usually through Facebook messenger and video calls. If Leo has a long drive home, they talk on the phone but try to video call with each other as much as possible.

Leo’s dream for Laura is for her to be in a position to be her own Self-Advocate. “I would like for Laura to find a group of people who are able to provide what she needs while at the same time listening to what she wants and needs,” he said.