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…

Living with Down's...real life story

Deb heard about this blog and what we were trying to do to connect, inform, and encourage parents in the area of options available to people with multiple/severe disabilities.  Deb sat down with me to share what many would call a “success story” about the life of her 36-year-old daughter, Jenny, who has grown up with down’s syndrome.

Deb advocated, “There is so much more available now for these kinds of kids than there was 36 years ago.  As a parent, it’s up to you to find those things out.  What kind of life do you want for your child?” Deb shared about what it was like to have your first child be diagnosed with Down’s Syndrome; the anxiety, disappointment, joys, fears, and determination one must have to overcome each obstacle.  She and a group of mom’s with children that had special needs got together and began writing letters to the state asking for them to begin programs, schools, and services for their kids. 

For this family, it took them a while to learn that “Jenny wants to do the same things we want to do”.  Jenny attends camps in the summer where she horseback rides, swims, and meets new people (all favorite hobbies for Jenny).  It may be time to change our definition of “independence”.  So, what does that look like at home?

Growing Up

When Jenny reached her 30’s and attended her brother’s wedding, something inside of her changed.  All of the sudden the woman inside her bubbled up, and the desire to “grow up” emerged.  Now, Jenny hopes to be married someday.  To prepare her for her future, her parents have transformed their walk out basement to a master suite.  It has Jenny’s very own bedroom and bathroom, living room, TV and movies, laundry, but no kitchen.  Every afternoon when Jenny comes home from working at Gateway (an employment agency for people with special needs), she vacuums and cleans her apartment, watches some TV, and when her mom gets home from work she will come upstairs to have a cup of tea and visit before dinner.  When Dad comes home, all three get to work in the kitchen for a collaborated effort in making a meal!  The only problem with this set up, is when Mom and Dad are ready to go out on a date.  They will order Jenny dinner and a movie… but she will sneak upstairs and eat food out of the refrigerator!