Brandon's transition update

I haven't posted for awhile.  My darn computer had a bad virus and it deleted some about to be posted posts.  But all clear again.  This is been a very busy start of the school year.  I hired a new aide to work with Brandon which always takes time for training and understanding.  That is now going very well.  Brandon is in his last year of school in the Adult Transition Program and our only goal is for a smooth transition to life after school.  We have a little more than 6 months.  I know that these last few months will go very fast.  I am anxious for them to be over and for Brandon to move on with his life but at the same time I am not ready to loose the love, support, and dedication the school has given to Brandon these last 3 1/2 years.  So I have mixed emotions as we move through this school year. To think outside the box this year I have made some major changes in Brandon's transition plan.  I hope these may be of some use to other parents as they search for that right answer for their own child's transition.  So far these changes have been great but they have all required effort from me, Brandon's network, Brandon's attendants and Brandon.

First, the school just could not find the right job for Brandon for his second job.  In addition, Brandon will move back out to Dripping Springs to my mother's house next door and I wanted the job to be closer to this house.  After struggling with the fact that the school should be finding this perfect job, I realized that this is a major transition year and I needed to take this on without the support of the school.  So on Monday's and Wednesday's I pull Brandon out of all or some of the school day to go to his new job in Dripping Springs with a major durable medical equipment company.  At the company he sorts and delivers mail.  I knew that without the support of a job coach and an attendant this would be difficult.  The ultimate goal is for Brandon to be dropped off at a paid job and perform job duties for a period of time each day.  Brandon would be so proud of himself, have a sense of accomplishment and be surrounded by peers at his work encouraging him each day.  But before we get to this point Brandon needs to learn as many job skills as possible.  His new job is a perfect setting for him.  Without much luck at DARS and finally working through the "sort of okay" of DADS, I have moved forward with a job coach for Brandon at this job in Dripping Springs supporting Brandon and his aide  So far this has really been successful and I was lucky enough to find a retired special ed teacher ready to take on this challenge along with his new aide.  As Brandon completes school we will readjust to what works best for him. He is adding new skills as he progresses in this job.

Secondly, I hired a facilitator to facilitate Brandon's personal network.  I am a very "type A" personality and I decided it was time to take a back seat and let someone run the personal network for Brandon and allow Brandon to take more of an advocate role for himself.  Brandon has really become his own man and is learning day by day how to advocate and speak for himself.  It is really exciting to see. The network is working on obtaining and maintaining jobs for Brandon, housing for the future and Brandon's most important topic after graduation- his trip to London and Liverpool for the International Beatles Festival.  We have work groups from the network working on all three of these topics.

Third is housing for the future.  Brandon is in his third year living with Chris his companion in a condo close to his school in Austin.  In June, Brandon will move back out to Dripping Springs to my mother's house next door.  Modifications were needed for this to happen.  I have been working since May to make changes to the house to accommodate Brandon and leave the most flexible options possible for his move.  The house will allow for another person with disabilities to live with Brandon and will also allow for a companion as well.  The house has monitoring in all major rooms so in the event Brandon is alone my brother or I can monitor on our iPhone if needed.  It also will allow Brandon to call both of us in the event he needs something and will allow for three way conversations.  I also modified the house with a drain in the bathroom in the event the bathtub overflows, smoke alarms in all areas of the house, a therapy tub for Brandon, key-less entry, touch toilet and sinks and a more private area for the companion.  All doors have been modified in the event Brandon must use a wheelchair as he sometimes does during illness.  We will also build in notifications for Brandon's daily reminders like we have today such as getting clothes ready for the next day, brushing teeth, shaving, etc.  I have no idea how independent Brandon can be, but I wanted him to have as many tools as possible for his success. 

I have worked with Brandon's attendants, his job coach and Brandon on a list of areas of focus for the rest of the year.  The plan is to focus on a list of living skills Brandon should work on to help him become more independent.  We also have listed job skills, socialization and health and fitness goals.  It is comprehensive and focused on those things that can help Brandon in the future.  Brandon still goes to UT speech and hearing and they are focused on Brandon's communication in the community and with his work peers.  Brandon also went to a great UT course about the History of Rock and Roll.  He loved it.  He is still singing in We are the Chorus.

Right now life is good and it is going to get even better. Brandon also went to his brother's wedding in August in Denver.  I was really proud of him because he wanted to do a short speech to Patrick and his fiance Caitlin.  He asked me to help him program what he wanted to say into "SonoFlex".  We programmed it on the airplane on the way to Denver.  Brandon said:

"Congratulations Patrick and Caitlin on getting married.  I am happy to have a sister. Mommy is happy because she has a daughter. I hope we can all do fun things in the future. Caitlin I hope you love the Beatles.  If not I will teach you.  Patrick I hope you are happy.  I love you and miss you."

Brandon pressed the buttons and presented his speech to everyone at the rehearsal dinner.  There wasn't a dry eye in the house.  He meant every word and was so proud of himself.  I was really proud of him for taking the effort and saying what he wanted to say.  That is not easy for Brandon and he showed great courage. 

A few Brandon highlights since the last post.

 Brandon at Ringo Starr Concert.  I swear he was looking right at Brandon many times during the night. 

 Before the wedding with Patrick, Landon and Brandon

 Patrick got Brandon a Beatles cuff link

 Brandon was dancing with all the girls

 Patrick and Caitlin - sweet

 Patrick and his mom Peggy dancing.  Peggy you rocked.  I could not have done that.  Fun

 Peggy and Brandon dancing after the wedding. 

 Brandon anxiously waiting Patrick throwing the garter belt.

 Brandon showing his nephew Landon how he uses his communication app on IPAD

Brandon and me at the rehearsal dinner. 

People in Brandon's Life have a Lifelong Impact

Today's blog is about changes.  Once again in Brandon's life, he is experiencing big changes and big changes for the whole family.  It is always with sadness and with happiness when people who work with Brandon move on to that next adventure in their life.  I have found in my years of hiring people to work with Brandon, that people who work with him form a incredible bond that is unique, strong, binding and with deep respect for one another.  Usually when an aide starts with Brandon they have no idea what to expect.  In Brandon's own unique way he will test each one of them until they pass the test.  This can take months.  It is not obvious to most people.  But it is to me.  He will pretend like he cant do anything.  See how much he can get someone to do for him and he will completely ignore until he thinks the aide is worthy of his effort to engage.  For Brandon, that effort is a great deal of work trying to train the person how to communicate with him, how to have fun with him, find out what kinds of music he loves and how to care for him.  I hired Ross Dubois about 5 years ago to work with Brandon. Up to that point in Brandon's life I usually hired women.  But Brandon was now 16, well into the changes in his life and I felt like it was time to focus on some male influences in his daily life.  I had hired two musicians previously who worked with Brandon and knowing that Brandon loves music I wanted to hire another male musician to be part of his life.  At the time, Brandon was recovering from H1N1, had lost 20 pounds, was very weak and sick and was recovering from foot surgery.  Not a great way to start with a new aide.  I found the perfect fit in Ross.  He really didn't have any experience working with kids with special needs, but he was willing to try.  He came highly recommended.  Ross had decided to go back to school and this was a good match for us.  He needed a job that could let him work part-time and with his schedule and we needed someone after school and flexible for those job trips I often have during the year.  Of course Brandon tested Ross, played a few tricks on him in the beginning, but they developed a deep bond.  Ross was the guy in Brandon's life that treated him like another guy.  Ross was also more like a big brother showing Brandon what is expected from him as he has grown older.  Ross has worked with Brandon on independence, being more responsible for himself, encouraging him to talk to his peers, coworkers and friends.  Ross was there for Brandon's first job experience at the Coalition for Texans with Disabilities.  Brandon had no idea what to do or what was a job.  It started out really rough.  But with the persistence of Ross and the group at the Coalition of Texans with Disabilities Brandon made it through 2 months in the job, developed job skills and made a video about the ADA.  Ross worked tirelessly in Brandon's jobs in the summer with the goal of independence and self advocacy.  Each summer Brandon was even stronger than the last.  Ross had also worked with Chris at the condo (the bachelor pad) to help Brandon develop good skills as a roommate and to achieve more independence.

Over the years Ross graduated from College with a degree in Journalism, played music as a solo artist and with various bands, traveled to other counties and toured with bands.  But we have always managed to work around the schedule for the time he was away.  I knew the day would come and last week was the week we decided would be his last working with Brandon.  I am so proud of Ross for pursing his dreams with his band "Not in the Face".  I have also reminded him to remember the little people when he becomes a rock star.  His loss was hard for all of us.  Ross for me was like having another family member hanging around the house.  I told him the last day he was here that I never worried about Brandon one day when Ross was with him and that meant the world to me.  He told me he was so proud of all the progress Brandon has made while he had been with him and grateful to be treated like part of our family.  Even my brother was so touched by Ross and he will miss him.  I was not here for Ross's last day, but my brother said Brandon hugged him tight and said he was going to miss him.  Thank you Ross for all the years of loving Brandon. You have made a difference and you should be proud of your impact.

                                           Ross with Brandon at a summer program.

Ross with Brandon at first job with COTWD

Ross with Brandon at SXSW and Yoko Ono Session

Ross at Brandon's graduation

Ross with us in Port Aransas

Ross and Brandon in "We are the Chorus"

Brandon;s birthday party

Okay enough already.  Below are some Ross pictures with "Not in the Face" and playing on his own.  So proud of the band and their success.  Go see them when they are in town or in your town.

http://www.notinthefacerocks.com/  

Employment is for all

This is the post I was working on this week, but was diverted by the news about Brandon's back.  Brandon is about to enter his last year in his school's adult transition program.  In Texas you can stay in this program as long as there is a need to the end of the year you are 21.  Brandon is still 21 and will turn 22 in December. So he will be able to stay in the program through May 2015.  As a wise friend told me 3 years ago, you have 4 good school years left, so make the most use of your school while you have the great supports.  I have taken that to heart and decided the plan would be for Brandon to leave school with a full week of work, activities, exercise and socialization which would seamlessly continue without the school supports.  The most important part of these 4 years is learning about working for an employer, learning the value of employment, learning job skills and finding the right job from those job trials, trying to become as independent as possible and stretching the number of hours Brandon is about to work.  For most kids leaving high school this may seem relatively easy, but for Brandon this has been a major hurdle and a great deal of hard work for him.  He has received fabulous support from the school, the employers especially UT, Brandon's transition program through UT and Brandon's aides who have continued this work through the summers.  When Brandon starting his volunteer job at UT he really didn't know much about how to work, how to do his job tasks independently, coming up with creative accommodations and learning how to develop relationships with his work peers.  Brandon and his network looked at all the job trials he has had and identified that he does best in a job with interaction with his peers, sorting and delivering items such as the mail and one that is repetitive.  We worked with UT with this criteria and found the perfect job for him to learn, which is sorting mail for a department and delivering the mail.  For UT, this was also a good match because no one wanted to go to the 1st floor, get the mail and deliver the mail.

The school worked on job tasks, provided a job coach, visual assistance, OT/PT assistance and slowly and patiently worked with Brandon for the last 1 1/2.  No one really knew what Brandon was really capable of doing in this job, but no one was willing to give up. In the beginning Brandon needed many prompts, assistance sorting, someone with him all the time, and prompts to initiative conversation with peers.  Here is a video a five months after Brandon started this job.  Lots of support and everyone wanting Brandon to be successful

 Brandon working at UT at 5 months

The aides that work with Brandon in the summer have not seen Brandon in his job since last summer.  But we were about to transition the summer jobs to Brandon's summer aides so Ross was the first one to see the progress Brandon has made in his job at UT.  He went with the school to UT to observe so he would know what Brandon was doing for the summer.  Ross contacted me and said he had tears in his eyes when he saw everything Brandon could do and how independent and happy he was.  That made me feel so good about pushing everyone hoping this would be a success.  Two weeks ago Kassie, Brandon's aide in school/last summer, took Brandon to UT.  This was the first time she was with him for over a year.  Brandon and Kassie are tight and Brandon was really proud to show Kassie his progress.  Brandon did all of his tasks independently, had conversations with everyone along the way, sang and was really happy and confident and went up flight after flight without assistance.  Kassie started to cry.  Brandon asked Kassie "are those sad or happy tears?"  She said "Brandon they are happy tears because I am so proud of you?"  Brandon said "Kassie dont cry happy tears, cry sad tears because you are not going to see Ringo Starr with me" and he patted her on the back letting her know it was okay.  She texted me this and I started to cry.  But I was also crying happy tears.  It is a long road and a great deal of work.  But it is worth it.  Brandon knows he has a place in this world, he is valued and he is confident.  I am soooo proud of him.  Kassie took a video of Brandon working in his job and I have posted it.  Just know that in reality, the school and Kassie/Ross are dropping Brandon off at the building and he is doing this job by himself.  But for the video Kassie followed him around.  You will also see a little Brandon Beatles humor.

Brandon working at UT after 1 1/2 years

One proud mommy
Leah

I am in shock - again!!!!!

Last night I was working on a fabulous post and movie about Brandon and how proud I am of him and his work.  But I will have to save that for another night.  Today I am back in shock, like I have been so many times in the last 21 years.  A new diagnosis, a new procedure, a new direction, all start with shock, depression, learning about what it means, acceptance and moving forward.  I hate the shock part.  And I really hate it when I am not prepared to be shocked.

Today I took Brandon to his new adult scoliosis specialist here in Austin.  He came highly recommended from many sources.  So I was feeling confident about our appointment today.  Just a check on Brandon's scoliosis. In fact I was feeling a little guilty for going in at all and wasting everyone's time.  In 2011, Brandon had his last check at Scottish Rite and the curvature was at 44%.  Below the dreaded 50% which is when the doctors start talking surgery.  At Scottish Rite we decided that Brandon was fine without surgery, he was doing well and he was past his growth period.  He has not gown an inch since 2011.  We all felt confident that Brandon would stay at 44%.  Again 44% is not perfect, but it is manageable.

Brandon had an x-ray at the office and we pulled it up in the exam room.  Brandon has gone from 44% to 52% since 2011 and he has not grown an inch and has the same weight.  This really puzzled me. Apparently there have been new studies that indicate Brandon's type of scoliosis can continue to progress,  The options for treatment is to do nothing, but risk extreme pain for Brandon in the future and possible progression of the curvature leading to a very extensive, complicated and painful surgery in the future.  The alternative is do move forward with the surgery to correct soon which has a high rate of success, less extensive and will repair Brandon's spine.  It's a crap shoot.  One that I don't take lightly.

Brandon would be in the hospital 5 to 7 days (that means 7) and could not go to school or work for 6-8 weeks.  Brandon is headed into his last year of school in the adult transition program and this would be a major consideration of when to have the surgery if we decide to go this direction.  We are planning on going to England next summer so I would want Brandon to be completely healed prior to us leaving.

Brandon immediately said he wanted to have the surgery.  But I reminded him of the pain from the past foot surgery and related that pain to what this surgery would be like.  He brushed off the topic and started talking about the Beach Boys.  I wish I could do that.

This also is not great timing for Brandon related to work.  We are making such great progress on Brandon learning how to work independently at a job and I think we are ready to start looking for competitive employment.  We don't want to lose the progress we have made for the last 3 years.

So I have decided we need to get a second opinion (now I am in research mode), reach out to Scottish Rite for their advise and the great "mom network" for their wisdom.  I am trying to move past the shock and get all the information I need to help Brandon and I make a decision.  But geez, I am feeling a little sorry for Brandon.  There is not good answer.

More later
Leah

Importance of Mother

For the last month I have been doing the dreaded task of cleaning up old files that I have stored in the attic.  I have kept 21 years of records on Brandon.  Every school assignment, paper, homework, IEP goals and objectives, medical records, nursing homes, Medicaid information, you name it I kept it.  When I have to deal with the records it is almost an unbearable task.  This is because there are boxes and boxes of records. But also because it is very emotional.  Finally two weeks ago I went through all of the boxes and shredded hundreds of pages of records.  I went from around 30 big boxes to around 4.  Why did I keep all this stuff? I was afraid I may have an issue with Brandon's school, insurance, Medicaid, SSI and would need these records to verify Brandon's abilities and conditions.  I still have all of Brandon's important medical records, but threw away school records that are not important at this point.  There are also some very sweet and amazing papers included in the boxes.  I found this one and decided to post today for all you mom's. Included in the page is a note from Brandon's aide stating that Brandon had the aide write this for an assignment.  They typed it up and laminated it for me.

Importance of Mother

My Mom is important to me.  I need food, shelter, and air but my Mother is the most important person that I need.  I need her love.  

My Mother gives me support.  She helps me with my homework.  She helps me feel better when I am sick.  Also, she helps me with my chores.  She comforts me when I am upset.  

Another important thing that my Mother does is to love me.  She hugs me.  I can count on her always.  She is very responsible about taking care of me.  My Mother knows me more than anybody.  

I watch movies during the holidays with my Mother.  I like spending time with her.  My Mom makes me my favorite meal Marconi and cheese.  My mom accepts me for who I am.  Spending time with my Mom makes me happy.  

I love the way my Mom supports me even when I don't want to do something.  I may say, "Why me?" but I know it is because my Mom loves me.  Sometimes I don't want to clean up my room. My Mom encourages me to do things even when I don't want to because she knows me better than anyone and she knows when to push me.  Most of all, I love her hugs. Those I can always count on.   

By Brandon Rummel

I always tell Brandon that I am the luckiest Mom in the whole world because I can have hugs and kisses whenever I want.  Happy Mothers Day everyone.

More later
Leah

BEATLES WEEKEND AT THE BEATLES FEST IN NYC

BEATLES WEEKEND AT THE BEATLES FEST IN NYC

 Brandon and Leah at the JFK Dedication of the Beatles landing 50 years ago

 Brandon and Leah with the Stewardess's on the flight with the Beatles 50 years ago 

 JFK Plaque

 Brandon with some "Beatles" from Liverpool

 The Liverpool Delegation

 He is Happy

 Brandon with Freda Kelly - She ran the Beatles fan club.  She has a new movie.  

Get it if you can.  It is on Amazon.  

 Brandon with Billy J Kramer

 Brandon with Mark Hudson (Hudson Brothers/Ringo)

 Brandon with Mark Rivera (sax with Ringo and Billy Joel) Great Guy.  Brandon really wanted to meet him. We saw him when he played with Ringo. 

 Brandon with Julia Baird (John Lennon's sister)

 Mark Hudson and Mark Rivera playing with Liverpool.  Great set

 Donovan

 Chad and Jeremy

The Smitereens

Lots of Beatles music 24 hours a day.  My favorite was Peter Asher.  What an amazing story.  Such a music career and he did a great job of his story and his story with the Beatles.  Also there was Prudence Farrow with sessions on Ashram.  Too many musicians, too little time.  Brandon loved every second.  He was with his Beatles peoples and loved it.  A lasting memory for all of us.  

FABULOUS NEW YORK CITY WEEKEND

FABULOUS NEW YORK CITY WEEKEND

Some pictures to remember or our New York City Trip

 Top of the Rock Observation Deck 

 Empire State Building View from Top of the Rock

 Kate, Brandon and Leah - Top of the Rock

 Strawberry Fields - Central Park

 Imagine - Central Park

 The Dakota - With Kate, Brandon and Cliff (our guide)

 Leah and Brandon at Imagine 

Below the Dakota

 Times Square

 Rockefeller Center 

 Kate - Times Square

 Radio City Music Hall

 Brandon in awe in Times Square

 The Apollo Theater

Ed Sullivan Theater