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

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

Transition Update

I have been working with Brandon's network on a plan for Brandon to transition to a more independent living situation next school year.  Essentially, Brandon would live here at the condo in Austin with someone he knows and trusts during the school days and on the weekends he will live with me in Dripping Springs.  We have worked up a plan on how to take baby steps so that the transition is not so foreign to Brandon.  Through Brandon's plan of care, I have worked in respite weekends throughout this school year where I am not in the condo and Brandon stays in the condo with one of his aides.  The aides take Brandon to social activities, work with him on independence activities and let Brandon have some Brandon time as well.  We are all hoping that this will help Brandon prepare for longer periods without me being at the condo. 

We just completed the third respite weekend and in two weeks will be the 4th.  This last respite weekend also came after four days of work travel for me.  Amazingly, this is the first work travel that Brandon did not have a medical emergency. Last month I went to Houston for a a two day work meeting and at the end of the second day I received a call that Brandon had a seizure and was complaining that he could not breath.  I ended up talking to EMS as they assessed Brandon and I had to convince them not to transport Brandon to the hospital.  Pretty frustrating when you are not in the same city.  It all worked out well and I ended up leaving early to come back to Austin.  I usually try to drive just for this reason.  So after four days of work travel and a respite weekend there was a little light at the end of the tunnel.  When I returned back to the condo, Brandon gave me a hug but then closed his door to be back in his teenager mode.  Not too impacted by a week away from mom.  Brandon later told me that he missed me a little, but loved hanging with the guys and I am okay with that.  This transition plan is working very well for Brandon, but I have found it is a major adjustment for me.  I believe we are both transitioning.   I still find it hard to not be in Brandon mode and to have a little bit of independence to do anything I want to do without him.  I don't really know what to do with myself.  And - I will always be glued to the cell phone just in case of that real emergency. 

In the meantime, Brandon is in full Christmas mode.  I hate to admit it, but he has been listening to Christmas music since July.  He has all his favorite Christmas music on his IPOD.  I am too lazy to remove them after each Christmas, so I run the risk of Christmas music when is it 107 outside.  Sometime around October he really starts listening to it, especially Bing Crosby.  His favorite - "White Christmas".  He is truly in heaven when the radio station at 95.5 begins their non-stop Christmas music.  Brandon loves Christmas. 

Brandon is also preparing for his birthday.  He thinks he is sneaky and will ask me what he is getting for his birthday.  I haven't given away the surprise yet.  He will be 19 on Dec. 9th.  I can't believe it, but glad it is almost here. 

On to respite weekend 4 with pottery classes and parties. Need to plan things to do on those respite weekends.  More later. 
Leah

This says it all

Brandon and Ross singing in "We are the Chorus"

 This says it all. Brandon is really Happy. Can't wait until "We are the Chorus" starts singing Christmas Music. Brandon loves Bing. Great Day. 

A Musical Weekend

Brandon and I are having a musical weekend.  Tomorrow we are headed to Houston to see the Music of Paul McCartney with Tony Kishman and the Houston Symphony.  Another fun Beatle night http://www.houstonsymphony.org/calendar/view.aspx?id=3731. 

Sunday, Brandon will have his first performance in "We are the Chorus".  I have been watching this group over the years and have loved their spirit and fun performances.  Joining "We are the Chorus" is part of Brandon's transition plan.  This will provide socialization doing something Brandon loves, which is music.  Brandon joined this year with his singing pal Ross.  Their first performance is Sunday at 3:00 pm.  It should be a fun show.  Come join us for the event. 

http://wearethechorus.org/

 

WE ARE THE CHORUS

Invites you to our Fall 2011 Program

Silly Songs

Remember those songs you learned as a kid and

sing along with along with us!

Three Little Fishies, Frog Went a Courtin’,

Bibbidi Bobbidi Boo,

and a version of She’ll Be Comin’ ‘Round the Mountain

that you may have never heard before.

You’re guaranteed to laugh and have fun!

Sunday, November 6, 2011

3:00 p.m.

Austin Lyric Opera Armstrong Community School of Music

901 Barton Springs Road

Admission is free

Brandon's Special Family

Hannah and Brian

This past weekend one of Brandon's favorite aides got married to her true love.  Hannah and Brian married in Buda in front of their many friends and family.  As we watched the celebration this past weekend it did make me think of all the great people that have helped Brandon in his life.  He really has been truly blessed with caring, gifted people in his life.  But I was also reminded this weekend that Brandon has had a big impact on those same caring people in their own lives and I have really enjoyed seeing them all grow into the fabulous adults they have become.  Hannah is a speech therapist working with kids like Brandon in Houston.  She really worked with Brandon as a student at UT on his communication device and his speech as she learned all about speech pathology at UT.  But she also was unafraid of Brandon, treated him like a little brother, shared with him many adventures that he loved and of course supported his love of the Beatles.  Hannah and Brandon made a Christmas video which one day I will post.  It will show you how they were so close and how much he loves her.  Brandon was a little jealous of Brian but you cant not love Brian because you can tell he really loves Hannah.  By the time we left their wedding, Brandon has very happy for both of them.  Hannah's whole family was there.  So was Ashley, Re'Lynn and Laura.  All of them at one point also cared for Brandon during their time as students at UT.  They became our family and sometimes I felt like their mom while they were away from their own families.  Re'Lynn is now a teacher and I always knew she would be a great teacher.  She is fun, sweet, caring, patient and loves kids.  She now has two kids of her own.  Ashley works in business and now has a baby named "Hannah".  She was a frequent visitor while Brandon was at Scottish Rite and her husband Jeff has been added to the the extended Brandon family.  Ashley also treated Brandon like part of the family and took him everywhere.  Laura who was going to be a nurse told me after the wedding that because of Brandon she decided to become a physical therapist.  Of course Brandon loved seeing all of them in his own way, but it was also really great to see all these great people who have been such a big influence on Brandon's life grow up into the great adults I knew they would be. 

When Brandon started having nurses and aides help care for him I had no idea what to expect.  Brandon was a little over 1.  After an evaluation with his case manager we began to have nurses come to the house to care for him.  I had no idea how ill Brandon really was until I realized that he was receiving 24 hour care several days a week.  At the most critical time in Brandon's life we had 12 nurses coming and going each week.  It was very hard to have no privacy, to receive all that great advice from each person coming in the house and to sleep knowing that someone is up all night watching your child in your house. But after a few years I finally adjusted to the routine.  The great thing about having the great care Brandon had, is that the nurses watching him early on were on top of his illnesses, told me when to call the doctor or when we needed to call 911 and probably he is alive today because they were there.  Before Brandon had nurses one night he had a 20 minutes seizure before I realized it was a seizure, Brandon apparently stopped breathing on a regular basis at night and I was not aware of all of his medical conditions until we had night nursing.  It really is amazing that he made it through the care I gave him prior to the care he received with the nurses. 

But the bad news about having such great care is that Brandon expected someone to tend to his every need all night long and it was very difficult transitioning from nursing hours to attendant hours.  When Brandon was 7 we moved from the MDCP program for kids who are medically fragile to the CLASS program.  The CLASS program works more on attendant hours rather than nursing hours.  At 7 Brandon had finally stopped relying on machines for most of his care and the nursing services were manageable.  I decided that it was time to try attendants.  It was very hard because I had to do the evening hours myself.  This meant I had very little sleep each night.  Brandon was so trained for 7 years that someone would care for all of his needs at night that it took several years to retrain his night habits and to not be scared without the care.  I slept on Brandon's floor in his room for almost 1 year trying to get him to sleep in his own room.  Still today Brandon will still sneak into my bed in the middle of the night, usually after he has a seizure or he has choked. 

Brandon and I loved all the nurses that cared for him and we see many of them when we have many medical appointments and hospital stays throughout the years.  But Brandon and I have also loved the many attendants that have been part of his life.  Our first attendant Clarissa worked endless hours with Brandon on saying each syllable and sound, pretended that Brandon was the weatherman when Brandon was interested in the weather and worked with him on his communication device.  She also worked with Brandon to help him learn to eat.  She now works as a speech therapist for a school district. Ashley G worked with Brandon on his school work and eating.  She is now a social worker and has a son.  She also became a part of the family.  Will listened endlessly with Brandon to music and never tired on Brandon's music obsession.  Brandon had many UT students work with him while he was home schooled and tirelessly worked on his communication device, math, reading, and science.  Kristin worked with Brandon on homework when he started back to school and started him in special Olympics.  She helped Brandon during both foot surgeries and recovery and came with us to Dallas during his hospital stay.  Brandon became part of her family on many occasions.  Ross has been Brandon's aide for the last few years and they share his love of music.  Ross has been working with Brandon while Brandon worked at jobs in the summers and all those guy things I cant do with Brandon.  Brandon loves Ross speaking Spanish to him and Ross loves practicing Spanish on Brandon for one of his classes.  Jeff also works with Brandon and has also been his aide at school.  He knows Brandon well and challenges him to show everyone how smart Brandon really is.  I could go on and on but I cant cover everyone and everything here. 

Almost all of the aides tell me that Brandon and him/her have a special bond.  I always see that but I think the special bond is really Brandon letting them into his world.  Because Brandon really won't give you any attention until he knows that you deserve that attention in his book.  Once you meet his tests, then that special bond happens.  Not everyone meets the test, but if you are lucky enough to meet that test, then I do believe Brandon will have a lifetime impact on those who have.   Everyone who has worked with him learns the very special gift that many people never learn in their lifetime about what is really important in life.   It is in his favorite Beatles song.  "All you need is love" and love and family is what Brandon is all about, with some Beatles along the way.  So thanks to all you special people who have helped Brandon over the years.  You know who you are. 

 Hannah and Brandon

 Ashley, Jeff and Brandon

 Laura and Brandon

Re'Lynn and Brandon

 Ross, Brandon and Uncle Jim

Brandon and Kristin at Scottish Rite

Love it- From other other wonderful parents with inspirational reminders.