From September 2021
After returning from the Upper Peninsula in August, I spent a quiet September close to home. Julia went to San Francisco to visit Allie for a couple of weeks. They traveled down to the central California coast and had a great time. I stayed at home because Justin's caregiving situation at college was falling apart. We anticipated Justin moving back home.
However, Justin showed independence by unexpectedly refusing to come home from college, even when it appeared that he did not have adequate caregiver coverage. Somehow, he made it work and took it a step further by deciding to come home less often. This new development has continued to the present.
The two caregivers that Justin employs are very responsible and have been with him for awhile now. They are both much closer to his age than us and also apparently less judgey and nagging. Justin's college career is on the slow track (one course per semester), but dormitory living offers a chance to live his own adult life in a highly accessible, single dorm room with automated doors, lights and devices. He also has a great internet and cable tv package, which is important to him. Most people live in a dorm room to go to college. Justin goes to college to live in a dorm room.
It took awhile for us to come to terms with this. Financially, this can work as long as Justin gets good enough grades to stay in school. We set money aside for Allie and Justin's college tuition. Justin is going to take a lot longer to go through his. He easily qualifies for full SSI, which pays for his dorm room.
We continue to talk by phone most days, but Justin prefers that our visits be on campus.
In fact, tomorrow is Justin's 22nd birthday. With Duchenne Muscular Dystrophy, every birthday at this point is a milestone. Justin requested a Japanese steakhouse dinner, so we will jump to the present tomorrow or the next day with a photo or two from his birthday celebration.
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| Hiking last week with Justin on the campus nature trail |
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