Saturday, December 24, 2011

Waiting for Santa One More Year

At this time of year it always reminds me of Brandon's innocence, his ability to dream, and his sweetness.  Because at this time each year for 19 years I scramble to be Santa just one more year.  Every year I delicately question Brandon about whether he believes in Santa or if he believes Santa will arrive on Christmas eve.  We track Santa's progress and Brandon loyally goes to bed early to make sure Santa will arrive.  I think in some ways Brandon might think there is no Santa, but there is enough of a belief that Santa is still possible that he hangs in each year.  So we continue each year.  It doesn't matter where we are each Christmas, Brandon still believes Santa has arrived.  It is one of the things I love most about Brandon.  He does still believe all things are possible and he still has that innocence.  Brandon has grown up in many ways of the years.  He is definitely a teenager.  Loves his own space and loves his own time.  But today I am reminded he is still is a kid at heart. 

We started the day off a little rough.  Brandon and I woke up early and headed to our annual ritual at Central Market to pick up the Holiday dinner.  Now that my mom is 90 and my Aunt is 90, the ceremonial cooking falls on me and my two brothers.  Really, only one of us slightly cooks and that one is not me.  I don't think that gene was passed on to the next generation of Rummel's from my mother.  But the great thing is there are so many options now for us "non-cooks" that the cooking part of Christmas is not too unbearable.  We stood in a short line for our Holiday meal when Brandon started to have a fairly major seizure.  Really no one noticed but us.  With this kind of seizure Brandon normally drops to the ground.  I held on to him as he had the seizure and as he tried to recover while Central Market staff was loading up the cart.  We saw one of the managers who know both of us from Texas Parent to Parent fundraisers and she came over as Brandon was about to recover.  Needless to say we were out of there fairly quick after our conversation.  Brandon has fully recovered and now is anxiously awaiting the arrival of Santa. 

So tonight one more year I will be Santa and one more year Brandon will believe.  Maybe it is a lesson for all of us this Christmas to treasure all those around you and you are never to old to stop believing.  Merry Christmas Everyone.
Leah

Thursday, December 22, 2011

The Value of Work

Several friends I have seen in the last few months have been asking about Brandon's jobs and how work is going for Brandon.  I wanted to give the topic justice and spend a little time on the update.  But I also want to be careful with Brandon's privacy and safety. 

Working with Brandon to find that great job match for him and his employer is something that I really love doing and I know it is really important for his future.  I know for Brandon, his job will be more than just a job.  For him it will be training to learn what it means to work.  It will be learning to interact with people like he has not interacted with before.  It will challenge his communication skills with every word he wants to speak, type or sign.  I know that he may find friends through his work.  I know that he will be proud of himself when he is valued for his work.  It also is key to Brandon's dream of living independently and success for his transition.  Therefore, job training and job placement is really important for Brandon and for his success.  I don't want him to have an awful experience and then he may never want to try again.  But, I also want him to be valued for the work he is capable of doing.  Really, the main motivator for Brandon is music and even better the "Beatles".  I haven't thought of the perfect "Beatles" job yet, but I have not given up brainstorming on this.  In the meantime, Brandon has had many volunteer jobs and his one paid job with Goodwill.  He worked at a library, the AG's office, the pet store (he didn't like the smell), his own shredding business, the food bank (he really liked this), a fitness center, a tanning salon and delivering mail at school. 

Prior to graduation, Brandon's network came together several times to brainstorm about jobs.  We determined that Brandon loves music, likes working inside, loves being around people and working in groups, likes to sort and of course loves music and the Beatles.  The group focused in on some volunteer jobs that may expand those skills in hopes that Brandon may someday have a paying job that he likes.  We tried to contact a local small radio station (filing and music), a assistant living home (socialization), movie theater, book store, a church (paperwork) and a local library.  Finally success.  Brandon was selected to volunteer at a local library.  They were a little hesitant at first, but I explained that his aide would be coming with him and we would be open for input for improvement.  The job was a little challenging for Brandon because he was having major health problems last summer as a result of seizures.  When he was feeling good he shelved books.  He would work great for about 30 minutes, but tire by the time the hour was over.  However, he really liked the job, being around people and learning how to work.  Brandon thanked the Library for his volunteer job during the summer and the staff said they would love to have him back next summer.  Our goal after this job was to build stamina for Brandon and work towards him performing the job independently. 

During the summer I contacted a major hospital system in Austin that frequently works with kids with special needs to learn job skills.  The branch I chose was not currently participating in the program.  I discussed Brandon's desire to work and his skills with an executive at the hospital and she asked managers of different sections that showed interest if they had any volunteer opportunities.  We found a match in medical records.  We decided that with the start of the new Adult Transition Program, Brandon and a job coach through the new school program would work on filing medical records two times a week.  I am adding pictures here to show what Brandon is doing.  This is a volunteer job, a training opportunity with the school and great experience for Brandon.  But it is not the "Beatles".  It may lead to a good long term employer match.   
Brandon selecting the medical record

Brandon identifying the number for filing
 
Brandon finding the correlating number/letter in the file.

Brandon putting the record  in the file
Brandon also works two days a week for a small company through the Adult Transition Program.  The small company does work with the legislature.  The company has endless paperwork.  Brandon is going through old bills and sorting them into piles.  He likes the job, but he really likes the people interaction.  For his birthday we went to Waterloo Records for a CD.  I asked him after we returned if he had a choice between working at Waterloo Records or this small company, which would he chose.  Hands down he likes the small company.  Knowing that Waterloo has the "Beatles", that means he really loves working at this small company.  And we all know it is because the staff really interacts with him and really like him.  That makes all the difference in the world.  He is valued.  I think everyone wants that in a job and in life.

Brandon reading through papers

Brandon sorting papers.
Through Brandon's life, Brandon has always had to learn how to do the most basic things.  Small things you and I take for granted everyday have been major victories for Brandon after years of learning.  Swallowing, reading, talking, using his communication device, walking, the list goes on.  Brandon does not give up and there is always a major celebration when he makes progress.  So I expect learning how to work will be a work in progress just like learning to walk.  All those successes along the way will be and have been inspiring. 

I don't often insert my soap box in the blog.  But I have to on this topic.  Brandon wants to live in a home just like you and I live in a home.  One he can call his own, whether it is an apartment, whether it is with a roommate or whether it is in a house.  Brandon doesn't want to sit home alone or with an aide all day long not doing anything or even on the computer all day long.  He wants to be with people, he wants to be valued.  I have friends who have kids who also want this as their dream.  But they just need the opportunity. I met a young man last year in his 20's.  He had a job working in a garage.  He loved that job.  But the garage closed.  He was not able to find another job and his grandmother was unable to care for him as a result.  Today, he is in the state school.  He is a wonderful young man, but the system failed him.  It really breaks my heart for him and what I know he can be.  That he is valued, living independently and living his own dream.  I don't want to ever judge other people's choices, but this young man said he wants to work, he misses his job and he doesn't want to live in the State school.  So please everyone - please keep an open mind as an employer and give a person with disabilities the opportunity to be valued and the gift of a wonderful and loyal employee for yourself.  There are many more adults with disabilities who just want that choice.  I do want to add success stories to this blog in the future.  I would love to add yours. 

More later.
Leah