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.

Kabuki Syndrome Camper...TRANSITIONS

Transitions.

For Nathan the transition from his family home to ‘his own place’ was easy, nothing to it. Nathan needed two things, his baby monitor and a dog. First he grabbed his baby monitor and put it next to the bed then told his mother that ‘every home needs a dog.’ Kabuki Syndrome Mom put a basket of stuffed dogs in the camper and the dog requirement was fulfilled, home sweet home to Nathan. What more could he need?

The transition to the camper was a bit more difficult for Kabuki Syndrome Mom. Nathan was unable to manage his medications, grooming, or schedule and what about at night, how would that go? Nathan had never slept more than a few hours a night, the rest of the night he was always up and about.

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!