I met with Kathy Schumacher in her lakeside home in beautiful Lake Winona, Indiana to talk to her about her daughter, Sarah. Kathy borrowed assistive technology equipment from The INDATA Project’s Equipment Loan Library and I visited with her to learn more about her daughter and her experience using the loan library.
The INDATA Project has an assistive technology equipment loan program. This program allows anyone in the state of Indiana to check out assistive technology for free for 30 days. These short-term loans assist our clients in making informed decisions about the assistive technology they might use at work, school, or home. Equipment includes devices for persons with visual, cognitive, hearing, mobility, learning, and other impairments. This program can help someone decide what equipment is best for them or can be used while someone’s device is being repaired. The library has over 2000 assistive devices that can be borrowed.
When talking with Kathy, I learned that Sara is 17-years-old. She has Macrocephaly Cutis Marmorata Telangiectatica Congentia (MCMTC). MCMTC is a rare congenital syndrome. With this syndrome, most patients exhibit facial and limb asymmetry, developmental delay, neurologic abnormalities, and joint laxity. Sarah was diagnosed with MCMTC when she was 11 months old.
Kathy told me that Sarah was born breech and 3 weeks early. When she was born her Apgar scores came back low. Apgar is a measure of a newborn’s physical condition. They also saw some unusual physical signs such as one of Sarah’s ears being larger than the other.
Sarah is non-verbal, but she is facially expressive. Kathy told me that she has the cognitive ability of about a 1-year-old. Sarah loves to be socially interactive and laughs a lot. Sarah can use her voice to make sounds and will do so if she needs to wake her mom up.
Kathy told me that Sarah’s orthopedic issues were one of their biggest challenges. Sarah had been using a walker and then she had surgery for scoliosis and multiple hip surgeries to get her hips correctly into her hip sockets. Sarah now uses a manual wheelchair. She also has a stander that she uses when at home. Sarah also has a hearing loss. When she was younger she wore hearing aids, but stopped using them when she had a surgery that required a neck brace. They will eventually be looking into getting her new ones. Sarah also suffered from seizures. Kathy told me these are now fairly controlled with medication.
Kathy and Sarah lived in rural Georgia when Sarah was little. When Sarah was 3, they moved to Winona Lake. Sarah was in the Warsaw school system until 2014. Kathy felt that Sarah’s needs would be better met in a small school system and moved her to Tippy Valley High School in Akron, Indiana.
Sarah is in a self-contained classroom with seven other students with severe/profound disabilities. In school, they work on activities of daily living such as feeding, stretching during physical therapy, and choir. Sara loves music and choir is her favorite part of the school day.
Kathy has had a difficult time being able to work full time while raising Sarah. She has had a hard time finding caregivers she can rely on enough to keep a full time position. Kathy is now working part-time and plans to move Sarah to a group home once she graduates high school.
Kathy told me that she has decided that it is the right time for Sarah to go to a group home because Sarah is very social and thrives in group settings. Kathy needs to return to work full time and is also concerned that she won’t always be able to physically care for Sarah on her own.
Sarah goes to a week long overnight camp called Springhill Camp in Everett, Michigan. Campers with special needs are integrated with all the campers at Springhill Camp. The campers with special needs have a one-on-one counselor at no additional cost. These counselors are trained to meet physical, behavior, dietary, or medical needs of the children so they can participate with all the other campers. The cabins are completely accessible.
Sarah loves going to this camp and mom loves reading the daily journal the counselors write describing all the activities they have done during the week. This will be Sarah’s last year that she can attend camp due to her age. Kathy says camp has been great for Sarah and helped her determine how much she will enjoy living in a social situation. This has made her decision to move Sarah to a group home much easier to decide.
Kathy took Sarah to Riley Children’s hospital who suggested that Sarah might benefit from an augmentative communication device and recommended a communication device with Unity. An augmentative communication device is a speech generating computer using pictures, words, or phrases. Unity uses easy to recognize pictures that will combine to make phrases and sentences when the button is pressed. When a user presses those pictures the communication device will speak for the user to express a word, phrase, or sentence.
Sarah started working with a speech therapist at Turnstone who also encouraged Kathy to look into getting Sarah a communication device. Her therapist then told her about The INDATA Project’s equipment loan library. Kathy was excited to be able to try the equipment before it was purchased. She told me that even though Medicaid had approved the equipment and would cover the expense, she wanted to make sure they were getting the right device.
When Kathy received the loaner equipment, she started teaching Sarah using modeling techniques. Kathy would use the communication device and encourage Sarah to mimic her actions. Kathy determined the best time for them to work on using the device was at the table during meals. Kathy was able to keep the equipment for two months since there had been no one else who had requested the device. Kathy told me that Sarah is getting used to hitting the buttons. Once they determined that the device was something Sarah will be able to use, they had one purchased for her.
Kathy said they have been trying to make it part of their routine when they eat. She tries to make it fun for Sarah and make a game out of it. Kathy told me that she knows it is a process and she is encouraged by Sarah’s speech therapist and having had the opportunity to try out the equipment. Kathy plans to get the device mounted to Sarah’s wheelchair to make it easier for her to use. Sarah has started to take the device to school and they are starting to use it with her at school.
I asked Kathy if she had any advice for parents who may be find themselves in the same situation. She told me, “You have to find the right speech therapist. Don’t be afraid to try someone else. Ask other parents and get on a waiting list for an augmentative communication evaluation as soon as possible as there are not many augmentative communication therapists out there.” She said, “Search to see if there is any type of equipment that could give you hope. Remember it’s a process and just try it. Try to find time to learn to use a device in your routine. I would advise starting small and trying to make it fun.”
It was such a pleasure to visit with Kathy and learn about her and Sarah’s journey. The INDATA Project wishes them all the best in learning the new communication device and for Sarah’s transition out of high school!