Parents know that they need to be hyper-vigilant with their young children. It only takes a second for a child to get into trouble. Kim and Pete Schwab understand more about hypervigilance than most parents.
Kim and Pete have two children. Their oldest, Katie, is a social worker who is married with a daughter. Their youngest is Hannah, who is 27 years old. Hannah has been living in an HCO home with three housemates since August of 2018. She is generally happy, willing to go anywhere, has an infectious laugh, and is very loving. Her ability to be affectionate with people she is familiar with developed when she was about 11 years old, when she unexpectedly began to recognize certain people as ones she loves.
Hannah has been diagnosed with chronic encephalopathy. She was declared healthy at birth, but her mother noticed early on that Hannah couldn’t hold her head up by herself. Feeding her was difficult and time-consuming since she had limited sucking reflex. At three months old, Hannah was referred to Gundersen Clinic for further observation and testing. Her feet and legs were not growing normally, so she began years of physical therapy. Many medical professionals predicted that Hannah would always be on a feeding tube and would never walk.
When she was around six years old, Hannah’s parents hired caretakers for Hannah to come into their home. For many years, she had the same caretaker, Susan Sagan, who was a godsend, Kim says. After that, the Schwab’s found wonderful help from nursing students at Winona State University, and from Viterbo in Brownsville. Nursing students loved working with Hannah’s easy-going personality.
Hannah, although in her late twenties, has the comprehension of a 1 ½- to 2-year-old girl. It is largely due to the Schwabs’ determination that Hannah is not on a feeding tube and can walk with a little help. One doctor, Dr. Wintersteen, believed what Kim and Pete believed, that Hannah would learn to walk. She helped them work towards that goal, and she did learn to walk at age 11.
When Kim and Pete moved the family to Brownsville, Hannah worked with ABLE (A Brighter Living Environment) and moved into an ABLE home in Caledonia at the age of 21. They, too, were determined to see Hannah’s abilities grow.
Hannah has had six orthopedic surgeries, requiring casts on both legs and feet that had to be kept on for 6-8 weeks. She has received extensive occupational therapy, as well as therapy for feeding issues and helping her to use her hands. She also received equine-assisted therapy at Winona’s Big Valley Ranch. A horse’s gait moves the rider’s hips and pelvis in the same way humans move to walk, promoting strength, balance, and flexibility in the rider, as well as a sense of how to move oneself forward.
Kim and Pete have always kept Hannah active, pulling her in a cart behind their bikes or putting her in a backpack on hikes. She loves the outdoors and especially loves going out on the river. She revels in the noise, speed, and wind of the moving boat, which she likes to be driven fast! The family also goes on short and long vacations. They have been to Florida many times, as well as San Antonio and Albuquerque, and are planning a trip to New Orleans.
The only restrictions to Hannah’s activities have to do with weather. Cold weather is off limits, as Hannah refuses to wear a hat or mittens. She likes to have her hands free. In hot weather, she can become overheated and ill.
These days, Hannah can walk for thirty minutes by herself at her own pace. She likes to ride her bike, play catch, and swing on swings. She needs someone with her at all times, however, due to poor balance on uneven surfaces, such as changes to and from carpeting, thresholds, and turns. Hannah has cortical blindness that renders her almost totally blind at times and gives her limited vision at others. She has to be helped up and down curbs and steps. Sometimes she walks with a walker or pushes her wheelchair or a shopping cart. She does not have a developed sense to catch herself when she falls, so caretakers must be vigilant.
Now the Schwab’s are moving back to Winona, and Hannah is living in an HCO home. She is learning to eat more things. Continued problems with chewing and swallowing, plus reflux, as well as having no pincher grasp means that she has to be spoon-fed. She likes salty things, especially chips, which is something she can feed herself if they are bite size. She can pick up food using her whole palm of her hand. Her reflux is under control, but she needs to be encouraged to be hydrated and will only eat and drink if seated at a table. Up until the age of 15, she didn’t seem to register either hunger or thirst.
Hannah’s sense of hearing is sharp. She enjoys listening to television and playing with toys that make noise. She also likes her radio, which she can operate by herself by pressing a switch in her room, giving her independence and choice. Her favorite music is country, which Kim says was introduced to Hannah by a caregiver. Kim says she and Pete weren’t country music lovers before, “but we sure are now!” Hannah’s favorite country artist is Shania Twain.
She still attends a day program in La Crescent at ABC Works. In April of 2018, she fell and broke her leg and ankle, which required a full cast on her right leg for 6-8 weeks, followed by a boot for 3-4 weeks. She then somehow broke the plate in her leg and had to go back to a full cast for two months. She has just recently begun walking again.
It can be difficult for parents to make the transition to a less hands-on life that have been on a journey like the one the Schwab’s have been on with Hannah. Hannah has adjusted well to her HCO home, while still spending time with her family each week and on vacations. In order to plan for all possible situations, Kim and Pete developed “Hannah’s Life Plan” – a three-ring binder that contains all the information, down to the smallest detail, that a new caretaker would need to keep Hannah happy and safe.
In a section entitled, “Hopes and wishes for Hannah,” they wrote:
“Even though Hannah is in an adult body, she will always be a young child. As Hannah’s parents, we have learned to accept this fact. However, Hannah is still a special person. It is sometimes said that the simplest things in life are what are most important. In Hannah’s case, the simple things in life are all that matter to her and this isn’t a bad thing. Hannah is always happy and willing to go along with pretty much anything. She has an easy-going personality and doesn’t have a mean bone in her body. Hannah never cares what she looks like, and she never worries about money. She leaves most of life’s problems up to others, and she starts every day with the idea that it will be a good day.”
The Schwabs, generous contributors to HCO in the past, recently donated an accessible swing set and concrete walking path to Hannah’s house, which Hannah and her housemates are now enjoying.