By L. Kathleen Sheriff, Parent and Texas A&M University Educational Psychology Graduate Student, Willis, TX
Abstract: Transition from high school to college can be a challenge for students with disabilities, particularly for students with multiple sensory disabilities. A mother shares the journey of her son with CHARGE syndrome excelling at the challenge of meshing medical fragility with his sensory disabilities to achieve academic success and independent living at Sam Houston State University.
Keywords: Family Wisdom, deafblind, transition, independent living, college, CHARGE Syndrome
I never dreamed I would see the day Chris would enroll in college, but I always planned his education as if he would attend post-secondary schooling. Early on in Chris’ life I noticed he had intelligence, but he was years behind his peers socially and academically due to his multiple congenital disabilities. He was born with CHARGE Syndrome even though we did not know that in 1982. We only knew he had multiple congenital anomalies presenting him with major health challenges. Education was always secondary to his health-related concerns. It has been a delight to watch him grow developmentally, academically, and socially since entering college several years ago. He is now a junior at Sam Houston State University, majoring in Technical Theatre. This is the story of Chris’ courageous series of transitions from high school to his current independence as a student at SHSU in Huntsville, Texas.
Chris graduated from Klein Forest High School in Houston, Texas in 2002. What a celebration we had! Seventy-five people graced our doorstep to say congratulations to him and place money on his money tree (a silk decorator tree) in our den. Chris placed a sign on the tree that stated, “Dad, you said I’d graduate when money grew on trees! Hang your money here.” Everyone who saw the sign laughed and then as Chris expected, hung bills and checks on the tree. When asked at that time what he wanted to do, he stated he wanted to attend community college at Tomball College taking classes leading to a paraprofessional certificate. His goal was to assist in the local deaf education coop. Advocating and charged with excitement, he enrolled in a certificate program at Tomball College.
During his first year post-high school, Chris volunteered in a public special education preschool class several days a week while he attended classes at Tomball College. He lived at home, and my husband Steve drove him to his college classes and to volunteer at the elementary School, since Chris can not drive due to his vision and hearing disabilities. Chris attended this same school as a preschooler. Though he could speak orally as a young adult, he was able to use his first language, sign language, with the students. The special education teachers Chris volunteered with befriended him and welcomed him into their classrooms. They were very supportive and trained him in workplace social skills while on their campus.
Recognizing a need for a college study group, Chris and several classmates met to help each other with class assignments. I read his texts with him and listened as he read to me. I shared scenarios from my classroom and sometimes allowed Chris to volunteer there. He connected the material he was learning in college with the programming he was a part of in his volunteer preschool class. The next thing I knew he was volunteering to teach typical preschool children at our church on Sunday mornings. He was definitely charging forward toward his goal of working with children in our local community. Chris completed his certificate program, but was not offered a position to work for the district where he volunteered. I was disappointed for him because I knew he had worked very hard and wanted to be a paraprofessional in a preschool classroom.
Chris’ best friend Jay came by to visit during his Fall 2003 holiday break from Texas State Technical College in Waco, Texas. Jay convinced Chris he could be successful at TSTC. He also told him about a staff member at TSTC who helped students with accommodations. I arranged for a campus visit, even though my main concern was the three hour distance Chris would be from us if he enrolled there. Chris did enroll at TSTC where Jay was, moved into the dorm next to the office area, bought books, and began classes in January of 2004.
His first schedule consisted of technology courses combined with developmental courses in reading, writing, and math. Steve and I drove to Waco every 10 days to check on Chris, bring medication, shop, and pick him up for medical visits in Houston, though we located an excellent cardiologist in Waco to monitor his aortic valve replacement. His counselor handled modifications for classes, and the dorm staff looked after him. The campus nurse had him come to clinic regularly for blood pressure checkups, and to just chat with him about his health and diet. He ate in the dorm and kept food in a small refrigerator in his room. He had the internet and a cell phone for contact with us. The laundry was across the hall from his room. Maintenance staff put a light switch door bell in his room, so a light flashed to tell him someone was at his door in case he could not hear the bell. He rode a church van to a local church on Sundays and became active in a college ministry. These friends began to pick Chris up for Bible studies and parties. Chris introduced them to us, and we attended several church services with him so we knew who to contact if he had a need before we could get to him in Waco.
The third semester Chris attended TSTC, he and a friend rented a small house. The friend agreed to cook meals and drive Chris as needed in exchange for free rent. One evening, Chris cooked a frozen pizza himself and left the gas oven on. Symptoms of CHARGE syndrome for Chris include a lack of the senses of smell and taste. When his roommate arrived home, Chris was very ill due to gas in the house. We drove to Waco, where his roommate had helped him survive the evening by taking him for medical care. He recognized he needed to be closer to home, and we absolutely did. Chris loved TSTC, but the drive was exhausting for us, and after three successful semesters there he felt ready to transition and charge forward to a four year school.
Chris had good grades at TSTC and applied to Sam Houston State in 2006. He was accepted, and moved into an apartment with his sister Amy who was a student at SHSU. The counseling center helped with class modifications, and the medical center monitored his medical needs and contacted his Houston cardiologist for him. Amy cooked meals and drove Chris wherever he needed to go. Slowly, he began to learn to cook. Yes, the stove was electric this time. He joined a local church behind his apartment complex and walked there for college ministry activities. Amy eventually left SHSU, and Chris moved into his own efficiency apartment alone in Huntsville in 2007. He walked to classes and church friends or theatre classmates drove him places when weather warranted. Steve and I attended church with him on Sunday mornings and met his friends and the staff there. Once again, he had made friends with adults who respect and admire his drive toward independence, and were willing to participate in helping him achieve it.
After Chris suffered a stroke in Huntsville, Steve and I moved from Houston to near Huntsville in order to be near him. In Spring, 2008, Chris had a serious surgery and returned home for six months to recuperate. He returned to his own apartment just a few months ago to charge forward once again, living independently. His apartment amenities include a van for transportation, a washer/dryer in each apartment, a large flat screen television, and free internet service. What more could a guy need, right?
Steve returned to college and now attends classes at SHSU. He and Chris have lunch together several times a week, we attend his church several times a month with him, and I clean his apartment with him twice a month. He is learning to cook simple meals and finds he enjoys using a crock pot to make dishes that last for several days. He does his own laundry in his apartment. I still tutor Chris regularly, and he knows to give me advance notice when he needs help with assignments. Quite often the only help he needs is with inferential writing and new vocabulary. Steve and I still help manage his finances since he lives on his disability money, college grants, and college loans. He is learning to manage credit cards and balance a checkbook.
Chris recently openly shared that he is aware he will always need to live close to family. His current plan is to graduate from SHSU and work for his older brother Nate, who is an assistant producer for a theatre in London, England. Nate says he welcomes that day. His younger brother Patrick lives in New York City, and has also offered for Chris to live and work for a theatre there near him. We are proud of Chris’ tenacity and honored to be related to him. Our family is charged and charging forward to help Chris transition into the independent man he desires to be with his own opportunity for living life to the fullest.