Friday, November 5, 2010

Kabuki Syndrome Camper... A Place to Live??




What are the living options available for a special needs adult with Kabuki syndrome, who is medically fragile, has behavioral issues and is as capable of taking care of himself as a 5-year old?

Is adult foster care or living at home the only options for people with special needs. What happens when neither of these options is acceptable?
Kabuki Syndrome Mom and Dad were faced with these issues when their 18-year old, Nathan with Kabuki syndrome felt the need to be independent.
Suddenly, Nathan started asking strangers if he can move in with them, recounts Nathan’s Kabuki Syndrome Mom. But how and where? The traditional living option of adult foster care wasn’t appropriate for Nathan.

As Nathan continued to ask strangers if he could live with them, having tantrums screaming ‘I want to move out’, Kabuki Syndrome Mom & Dad tried to figure out options. ‘It’s difficult to recognize that your role as the center of universe ends as kids age and they demonstrate the desire or intent for independence regardless of their abilities.’
Options considered:

· Remodeling part of their existing home: this wouldn’t be Nathan’s ‘own’ space not an ideal solution.
· Building a house on the their property near their existing house- they own 2-acres seemed to be the best solution. The local zoning laws would not allow another dwelling on the property.

Kabuki Syndrome Mom & Dad continued to search for a solution, when they got a tip. The local zoning ordinances were completely silent on CAMPERS. So Kabuki Syndrome Mom & family bought a camper for their son and parked it next to their back deck.




In the beginning the camper was a temporary solution to allow Nathan his own ‘space’, a place to spend time during the day that he could call his and he could control. Kabuki Syndrome Mom & Dad brought the camper home and told Nathan it was his in March 2010. When Nathan saw his new camper, he ran into the house, grabbed the baby monitor that he always had next to his bed and put it in the camper. Nathan refused to spend the night in the house ever since, choosing instead to sleep at ‘his’ place.

Has anyone else ran into zoning issues when considering options for independent living for your loved one? Please share what you learned.
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