I was able to meet Tim Hartshorne at the last 2 conferences he is a great man and I love how he helps the CHARGE Families learn about what our kids have to look forward to in the future. Now his song Jacob is 21 and has his own home right next door to his parents, Its amazing to read this and know Eva could do more.
His parents want Jacob Hartshorne to be a more independent person, but it doesn’t mean they don’t already miss him. “It’s a little scary letting him go,” Tim Hartshorne said of preparing to move Jacob into his own home.But the fact that he is only right next door helps, according to Tim. “I can keep an eye on him, but he can be in his own home.”
Jacob Hartshorne has CHARGE syndrome, a condition that limits his vision and hearing and makes communication very difficult. Nancy Hartshorne said because of Jacob’s condition they weren’t sure how he would handle the move because they couldn’t talk to him about the process. But she said Jacob, 21, is still developing and making progress towards his independence. Since officially moving into the house Jacob seems to be really happy in the space that is entirely his own, according to Nancy. “He was ready,” Nancy said about him moving. “I may not have been ready, but he was.” “It doesn’t hurt that he’s right next door.” With a floor plan that is almost the same as his parent’s house Jacob’s new house was easy for him to accept. Jacob is able to stay in his own house with caregivers through the Hartshorne’s use of the MI Choice waiver program through Community Mental Health for Central Michigan and the state. The program gives the family a portion of the funds that would normally be used to care for Jacob in a state-run facility and instead allow him in-home care. Nancy said they have always tried to include Jacob in all aspects of community; school, church and everywhere he goes.
“People in this community know Jacob, they care about him and he’s made an impact on the community,” Nancy said. This relationship is reciprocal, because members of the community were invited to help the Hartshornes figure out what would be the best features to add to Jacob’s house. Large sheets were hung in each room and people wrote what things they think Jacob would need or like in each room; most of the ideas were realized. Around 20 CMU students came to help paint the walls during the construction.
The construction process was coordinated by professionals but the work was done by volunteers from the community that the Hartshornes continually praise. Nick Cluley of Central Services hand built the special platform in front of Jacob’s bay window and said the house has come along quite nicely. “I’m sure it will be a good thing for them,” Cluley said of Jacob having his own home. Jacob’s house warming on August 15 brought many people to his new house to help mark what Tim said is possibly the last major event in Jacob’s life.
Past and current caregivers, friends, family and community members came to witness Jacob’s big step towards independence. The overall idea was to make a home full of things that would appeal to Jacob’s sensory needs. He doesn’t have good vision, but he can see and bright colors are throughout the house, including a large wall mural in the living room painted by his aunt.
Tactile experience is a large part of Jacob’s sensory needs and the Hartshorne’s tried to give him several options in his home, including fans, places to spin around and soft couches. Jacob likes air movement so a friend made a special wood casing to hold a fan mounted on the wall, so Jacob can feel the air, but not accidentally knock over and break the fan. Water is also something Jacob loves so he not only has a special bath tub that has air jets in the bottom but he also has a hot tub on his back porch. He also loves to spin. “He’ll do it when he’s happy, he’ll also do it when he’s upset,” Tim Hartshorne said.
They placed a shag rug in the middle of his living room and Tim says that has become Jacob’s prime spinning spot in the house. Mary Kooiker is Jacob’s one-on-one teacher at school and she said at first she was worried about the move, whether he would adapt to the change. “He seems to be doing really good,” Kooiker said. “I think it’s wonderful.” One of Jacob’s caregivers, Katie Travis of Bay City, said moving into his own house is a big step to him becoming more independent. “People have milestones,” Travis said. “This is a huge one for him.”