A reason to smile
Horizons helps Jon Allee, who has cerebral palsy, be more self-sufficient
March 27, 2004
Jon Allee sat in his wheelchair at the edge of the bowling lane and watched as falling pins turned into his first strike of the day.
As others shared high fives, Jon watched silently and then a slow, dimpled smile spread across his face.
The 21-year-old Steamboat man with cerebral palsy has a smile that catches the eye.
“It is his smile; it looks approachable. He is approachable,” said his father, Mike Allee.
“Others may be afraid to make contact, worried because he is a little different. But with Jon, you look at him, and he draws you in.”
Jon, who attends the Stepping Stones program and needs constant care, has more than strikes to smile about these days.
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Jon was nearing the end of his time with the public school system, and there was no spot for him in the Horizons Specialized Services program.
His family was making plans to customize a van so he could travel with his dad, a homebuilder and concrete layer, to job sites each day. Horizons looked at the Doak Walker Care Center, a less-than-attractive choice for a vibrant 21-year-old.
Then, Horizons made a phone call to a state official and tapped into hard-to-find funding to place Jon in Horizons’ housing and program.
It was divine providence, his father said.
“The thought of Jon having a solid, awesome place to live is just a dream come true,” the elder Allee said. “It is just an answered prayer.”
Horizons is seeking community donations to help the nonprofit agency with the $40,000 cost of equipping Jon’s new house with an elevator, remodeling his bedroom and building a wheelchair accessible bathroom.
Like any 21-year-old, Jon is ready to leave the house, his father said, and like most fathers, Mike is a little apprehensive.
“I expected to raise Jon to the day I keel over,” he said. “The thought of letting go at first was kind of tough, but I’ve warmed up to it.”
‘Better than expected’
Jon’s smile is familiar around town. He helps out at Johnny B. Good’s Diner making daily fliers on meal specials in return for milkshakes. Until recently, he spent six years at the high school, and Mike guesses he knows just about every teenager in town.
He also is a favorite among the Steamboat Springs Transit bus drivers and knows every pastor at Euzoa Bible Church.
Jon loves to bowl, plays video games and has what some would call a sarcastic sense of humor, said his severe needs teacher, Paula Lotz.
“He is intelligent with an incredible sense of humor; it is just that his body doesn’t work,” Lotz said.
During his birth, Jon went about 15 minutes without oxygen. That time created the lifelong effects of cerebral palsy, Mike said.
Cerebral palsy is caused by brain damage before or at birth or within the first few years of a child’s life. Its symptoms are tightness in muscles, involuntary movements and impaired speech. Other medical problems could be seizures and mental impairments.
Mike knew Jon could face difficulties from the time he was born but didn’t know how severe.
“The doctors didn’t paint a pretty picture for us from the beginning,” Mike said. “In my mind, it turned out better than expected.”
Jon was born in San Antonio, Texas, but he moved to Steamboat Springs with his father and two brothers in 1995.
Jon’s mother died in 1992, and Mike said a midlife crisis prompted him to relocate to the Rocky Mountains. With camper in tow, Mike and his three sons went to Durango, passed through Aspen and arrived in Steamboat.
After a four-day visit, the four traveled back to Texas, sold the house, packed their belongings and moved to Steamboat.
Steamboat was not quite ready for Jon when he arrived, Mike said.
Few sidewalks were handicap accessible, the buses did not have wheelchair lifts, and the schools weren’t prepared for a severe needs student, Mike said. Adjustments were made.
“Everywhere Jon has been, people have bent over backward to help,” Mike said.
Though bound by wheelchair and in need of round-the-clock assistance, Jon strives for independence.
Opening doors and planning his own lunch are ways Jon finds self-sufficiency.
“Jon wants to accomplish something himself,” Lotz said.
For four years, special needs teacher Brad Weber worked with Jon at the high school. In the middle of the high school’s remodel, Jon had to learn how to open a heavy door with a lever handle. Although at his quickest it could take Jon 40 seconds to get through the doorway, he would turn down help when offered.
“If you allow him and expect him to meet challenges, he will,” Weber said.
That quality had Weber nominate Jon for high school Student of the Month, an honor that came with recognition at a teacher’s breakfast.
“He taught me more than any college professor,” Weber said. “You have to rethink what you are doing when you are working with someone like Jon.”
During his high school years, Jon’s verbalization skills improved as he started asking for help rather than expecting it. Once, he even managed to communicate a complex 40-minute story about a fire near his house the night before.
It was those verbal skills that Lotz was afraid would have been lost if Jon was taken to the nursing home or would have had to stay in his dad’s van each day.
“He is a lot more assertive in verbalizing his wishes,” she said. “We don’t assume anything; he has to tell us.”
Learning life skills
Jon graduated from high school last year, and this year he was in Stepping Stones, a transitional program that works on life skills, job skills and social skills.
Jon’s future placement came into question when Mike learned his funding ran out this summer. Special needs students are funded through the public education system until age 21.
From there, students typically go into state-funded, assisted-living programs such as Horizons, but state budget cuts have hit those programs hard. Although Jon had his name on the waiting list for years, Lotz said, a place was not expected to open up until 2006.
“Unless a client dies or leaves the state of Colorado, there are no additional funds,” Lotz said.
But Horizons was able to tap into federal funds intended to keep young people out of nursing homes. Jon will receive $45,000 a year to be in the Horizons program and receive full-time care.
“I think we just truly got really lucky that the funding was available right when we needed it,” Horizons Executive Director Susan Mizen said.
The funding goes into effect June 1. Because the house will not be equipped for Jon at that time, Lotz will have him stay with her family. If Jon stayed with his father after June 1, he could lose the funding.
Horizons must convert Jon’s new living space into one easily accessible by wheelchair.
The needs include installing an elevator, about $20,000, and remodeling the house, which will cost another $20,000. The agency also hopes to buy a van that has a wheelchair lift, which is another $40,000. Once the upgrades are made, other clients can use them.
Horizons is applying for grants to help with the costs but is seeking community contributions to help. Although the nonprofit received annual funding for Jon, no money came for the start-up costs.
“We want to make this a success story, Mizen said. “But to make this a part of the success, we need lots of money.”
Mike is appreciative of the community’s assistance. He knows that with Horizons’ help, Jon has a bright future, and his family has the help it needs caring for Jon.
“It is a challenge, but it’s your lot in life,” Mike said. “It is actually a gift. It has really changed me and the children to the point of being more accepting of others, more open to other people and really it takes the focus off your self.”