Kabuki Camper...Meet Kabuki Syndrome Mom & Family

The Family

Kabuki Syndrome Mom

Having a place for Nathan to go when he is aggressive has definitely been a benefit to having the camper. Nathan’s grandfather states, ‘we were hoping the camper would take some of the stress off.’ In many ways the camper has taken stress off Kabuki Syndrome Mom.

Kabuki Syndrome Mom reports that Nathan has never really slept at night and was often up doing things in the night. One thing that really surprised her was when Nathan moved into the camper she was finally able to have a good night’s sleep. ‘I didn’t realized how sleep deprived I was” says Kabuki Syndrome Mom, “it had been so many years since I had slept through the night without interruption.’

The camper did increase Kabuki Syndrome Mom’s workload, having extra shopping, extra organizing and extra cleaning, but so far she’s managing.

Nathan

Nathan has been talking about his camper for months, just saying things like ‘I like my camper’, which is how word has spread. When we went out to see Nathan’s camper and talk to his mother, Nathan invited us into his camper and was very proud to show us around. After we had been in his camper for 10 minutes or so Nathan told us we could go.

We went into the house to talk to Kabuki Syndrome Mom and learn more about how things worked. Nathan came in and sat with us during our conversation. When asked why he wanted a new house his response was, ‘Because I did.’

Community Living Services

Kabuki Syndrome Mom & Dad have always hoped that Nathan’s brothers would not have to take care of him. Recently Kabuki Syndrome Momheard about a program called ‘CLS’-Community Living Services that assists adults with disabilities in becoming more independent.

CLS has a respite program with workers that will come to Nathan’s home and work with him on independent living skills and take him on community outings. CLS will be one more support system for Nathan and another step towards independence and building a fulfilling life.

How about you?

Does anyone have any experience with moving someone with a disability into their own ‘place’? Does anyone have any stories of what works or doesn’t work to make the transition smooth? Does anyone have any thoughts to offer Kabuki Syndrome Mom & Dad? Inquiring minds want to know…