A little step towards independence



My clean guest bedroom downstairs

This Christmas holiday Brandon and I agreed that he was going to begin becoming more independent.  We agreed that Brandon would move into the bedroom upstairs and I would turn the bedroom downstairs into a guest bedroom. 

I built this house over 13 years ago when Brandon was very ill and still had night nursing and was connected to many machines every night.  I purposely built the downstairs so Brandon and I could live downstairs with some privacy and built the upstairs so someone could live upstairs and help with Brandon's care, but both would have their private areas.  The upstairs has a bedroom, bathroom, small office and a workroom/playroom.  I think it a little over 700 Sq feet.  I also had insulation placed around the entire upstairs area so it would be more quiet.  At the time I wasn't sure if I would need someone to live with me to help with Brandon's care.  The space has actually been a lifesaver. 

While I was building the house, Brandon and I lived with my brother at his big house.  It worked out well for both of us because we didn't drive each other crazy and Brandon really loves my brother.  So when I moved in this house, my brother moved in soon after.  He helped with Brandon and was a great Uncle influence for about 7 years.  He also had his art studio in my garage which soon was completely filled with all of his supplies where I kept a small area for Brandon's durable medical equipment.  Eventually my mother and Jim both built houses next door, along with his studio.  http://www.rummel.1hwy.com/  His studio is shown on the "link" page.  Yes one big happy family on 4 acres.

Somewhere in the middle of this, I decided to home school Brandon and turned the workshop upstairs into Brandon's home school.  We had several teachers and many UT students coming in and out all day long.  There were two computers upstairs - a Mac and a Dell computer.  Lots of devices being tested to determine what was the best way Brandon learns.  Once Brandon started school again we kept the upstairs as Brandon's computer center and learning area. 

Before Christmas, Brandon and I decided that the upstairs is actually similar to an apartment and Brandon could live more independently upstairs.  The goal is for Brandon to sleep in his bed all night, wake up to his own alarm, pick out his clothes independently, deal with his own laundry and have his own "guy" space. 

I didn't realize what a project this would be for the Christmas holidays.  First we had to go through everything in Brandon's room.  We cleared out 5 bags of clothes, toys that are too young, books and even furniture.  We moved all of Brandon's furniture out and the room was a teenager mess.  Brandon's aide Ross and I cleaned the room, painted, moved furniture all Christmas holiday to assure Brandon's room was usable and the guest room was clean and ready for guests.  Brandon's room was previously painted like the Yellow Submarine on the walls (yellow) and Lucy in the Sky with Diamonds on the ceiling (navy blue with stars and the moon).  We painted it a dark tan with a cream ceiling.  Drastic difference (see above).

I really was looking forward to the move to have a little "Leah" time, but I have quickly found out that this is as much for me working through this transition as it is with Brandon.  It became clear very quickly how much I do for Brandon that really he can do for himself.  I always tell the aides that work with him "everything you do for Brandon is one less thing he can do for himself".  But now I have to face that I may be the worst offender.  I pick out Brandon's clothes, wake him up, get his medicine, wash his clothes and fix his food.  Brandon probably can do most of this with some nudging. 

I am also "in tune" to Brandon's sounds and watch for Brandon's seizures.  I wont be able to monitor as well as I do now.  So I have searched the web for a few things to help me with the transition and to still assure some safety.  First the upstairs is deeply carpeted on purpose to help in the event Brandon falls.  I did that a while back.  But Brandon is a little messy and I did not want to ruin the carpet too quickly, so for his new room I ordered a rug and water proof padding to protect the carpet below.  I also found a great monitor that has a two way radio (like when Brandon turns on the TV at 4 am).  ( http://www.amazon.com/gp/product/B002UDGVZS/ref=oss_product) It is also a video monitor and sound monitor so at night I can listen for any strange sounds.  I also found a simple reminder system that allows us to program up to six reminders. (http://www.amazon.com/gp/product/B001DTYJ04/ref=oss_product) If this works I can get something more complex, but I want to program in this device times to wake up, time to go to bed, time for medicine, time for a bath, time to pick out your clothes for the next day.  That's a great start. 

So we will see how we both transition through the next nine months as Brandon prepares for his 19+ program that will help Brandon learn the skills and work with him to find a job.  All baby steps for now, but important steps for the future.  I have a feeling Brandon may transition better than me. 

More later.
Leah

Brandon's new room. Its all about the Beatles and Elvis.