Friday, November 5, 2010

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.









Factors that made the transition to sleeping in the camper easier

According to Kabuki Syndrome Mom there were two reasons the transition to sleeping in the camper worked for Nathan. One was maintaining Nathan’s bedtime routine with his dad. Every night since Nathan was little, he and his dad say to one another, ‘Good night little mister.’ ‘Good night big mister.’ Maintaining Nathan’s bedtime routine has always helped Nathan to sleep even if he’s in a hospital somewhere and his dad is only on the phone, according to Laura.

Nathan’s brothers were the other factor that assisted with Nathan’s smooth transition. Nathan is the oldest of 5 boys, Nathan’s brothers took turns ‘spending the night’ in the camper. After a few weeks Nathan decided he didn’t want anyone to spend the night anymore and he had been seizure free so Nathan was now independent at night. Although bothKabuki Syndrome Mom & Dad admit to peeking in the windows to check on him from time to time.:-)
The nighttime transition to the camper went smoothly but as always with anyone with special needs there was MUCH more, medications, meals, snacks, cleaning, grooming and all the other aspects of daily living.

Medications

Nathan is on many medications, Kabuki Syndrome Mom set up a medication station for Nathan. Every medication box is clearly labeled with the day of the week Laura fills the medication boxes. Nathan is responsible for bringing his medication box to Laura each day so she can give him his medication. Nathan is not allowed to open any of his medications, and he doesn’t. Now 7 months later, Nathan continues to need some reminders to bring his medication boxes to Laura, but he’s getting better.

Meals
Nathan is not safe to use a stove so Kabuki Syndrome Mom & Dad removed the stove from Nathan’s camper but left the microwave. Nathan is always welcome to eat his meals with the family but also has microwave meals he can prepare for himself.


Budgeting

Every Sunday Kabuki Syndrome Mom and Nathan go to the store to shop for snacks for the week.
Laura has been working on budgeting with Nathan and thought that shopping would be a good way to develop some money skills. Kabuki Syndrome Mom reports at this point Nathan is unable to understand the relationship between money and groceries but he does understand if something is on sale he gets more.


Snacks
Nathan has his favorite snacks and knows where they are in the store so when they arrive at the store Nathan walks around and looks for sales. Not budgeting, but it’s a start.



From September until June Nathan attends a center-based school. Nathan is always hungry when he gets home to school. Nathan has snacks and pop in his camper he can prepare for himself when he arrives home.

Nathan has no self-discipline when it comes to his snacks and soda pop. Every Sunday after shopping Mom sets up Nathan’s snacks for the week. Kabuki Syndrome Mom has 7 sacs each labeled with a day of the week. She puts a snack and a soda pop for each day in each sack. Nathan will usually only eat out of the appropriate sack.

Sometimes Nathan will eat a snack a day or so ahead of time, but not often. On the few occasions that Nathan has eaten snacks reserved for other days, Kabuki Syndrome Mom has not replaced those snacks so Nathan has to go without for that day. She reports this upsets Nathan but he seems to understand that it was his mistake and gets over it quickly.

Cleaning

Kabuki Syndrome Mom has been working with Nathan on picking up his clothes, videos, and toys and putting them away. She reports that Nathan is getting much better at taking care of his things but he continues to need help.

Kabuki Syndrome Mom takes care of cleaning the bathrooms, kitchen and vacuuming. She says she isn’t working on that with Nathan because he would probably clean the toilet then lick his hands.

Behaviors

Over the past year Nathan has had many medication issues, which have led to severe aggressive behaviors. Nathan having his own space has been very beneficial in dealing with Nathan’s behaviors. The camper has allowed Kabuki Syndrome Mom & Dad to draw definitive boundaries with Nathan.

Nathan is constantly moving between the main house and his camper. The rule is, when Nathan is aggressive he is not allowed in the house. Kabuki Syndrome Mom & Dad are very strict about this rule and having the camper makes dealing with Nathan’s behavior much easier.
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