Today I took the scary step a parent of a child with special needs dreads.  Letting go.  Today I posted an ad for a live-in companion for my son Brandon.  It really is a leap of faith, but I do have faith that Brandon, me and his network will find that right companion to live with him next school year.  We all have worked through developing a creative way to start Brandon's next step in transition.  The step is to live separately from his mom.  Brandon will turn 20 next year and is very much a young man ready for independence.  But he still needs supervised care.  I don't have any other living options available for Brandon right now expect to creatively develop our own.  I realized that this condo where we currently live is the perfect setup for this transition and that I would be missing an opportunity to help Brandon with his next step to his good life if I didn't utilize an unique arrangement.

Brandon will go to school Monday through Friday and stay at the condo during that time.  On the weekends he will stay with me in at our house.  During the school week he will have his current aide Ross pick him up from school, take him to any planned activities or take him home and do the daily living activities until 7:00 pm.  Companion care will begin during the awake hours after Ross leaves and the morning awake hours until Brandon gets on the bus for school.  That frees the companion to go to work or go to school during the day.  Each night the companion will stay for free in the condo in exchange for watching after Brandon during the sleep hours.  The sleep hours require no care to little care.  I know it sounds easy, but the whole thing is a little complicated with a contract for services with the companion, mixing of CLASS waiver funds, SSI funds and private funding, keeping a running car available for the aides and preparing for emergencies.  In addition, I have started Brandon with electronic reminders and a monitoring system in the hours already.  Brandon responds well to the reminders but those will both need to be developed further.  I am also looking at other electronic methods to make the transition smoother for everyone. If you are a parent searching for more information on these type of electronic supports, I highly recommend this site.  http://login.npwebsiteservices.com/leap/IILP.asp.  I cant stop looking over the information for ideas for this condo to help Brandon be as independent as possible.  What a great group of parents.

So this is all very scary for me, but just like any parent - I know it is the right choice for Brandon.

More news - Brandon won a silver medal this weekend in special Olympics for his track meet.  He dedicated his win to the memory of Dick Clark.  He was a little irritated with the announcer handing out the medals that he could not understand his memorial.  But we all knew what he was trying to say.  I pulled Brandon from his softball throw.  He had a 2 hour wait in the heat and I didn't want to chance any additional seizures.

About those seizures - Good news.  Brandon has been excepted in the Epilepsy Clinic at Dell Children's Hospital for a 3 to 5 day stay to review Brandon's seizure activity, his seizure disorder and determine the appropriate treatment.  Because of this, Brandon will end his school year 1 week early.  I am very relieved to  have a thorough review and recommendation.  This will only help his next step to independence be that much easier.

So on to finding that special companion for Brandon.  Wish us luck.
More later.
Leah