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.

Respite Weekends

This summer I participated in the Texas Parent to Parent conference in San Marcos.  I decided to spend the two days in the "Transition Summit" oprtion of the conference which included many topics on transition facilitated by Rosemary Alexander (former AISD).  Rosemary and I have known each other since Brandon was 1.  She worked at the parent organization associated with the ARC of the Capitol Area which then formed into the Texas Parent to Parent.  As many of you know, I was on the Board of Texas Parent to Parent for several years.  After serving on many boards over the years I decided to only give my time to those I really believe have a direct impact on the population they serve.  I really believe Texas Parent to Parent serves their population, including this parent. 

I presented a couple of topics at the "Transition Summit" on networks and SSI.  But I also did a great deal of listening and thinking of ideas on how to move forward with Brandon's transition and to try my best for Brandon to have a good life.  In Brandon's plan for the future, he said that he would like to live independently with a room mate or his wife (scary).  This is his goal in five years from when we developed the plan.  After talking to Rosemary and the group, I realized that I needed to start letting go.  I needed to allow Brandon to have some independence away from me.  I have worked into Brandon's plan of care 1 weekend a month of respite.  Brandon stays at the condo one weekend a month with a choice of two aides who have worked extensively with Brandon.  I will be away from the condo for the weekend. 

Last weekend was our first respite weekend.  I have to admit that I do travel for work on occasions for short periods of time and occasionally I take a vacation trip about every other year.  These are all where I am away and Brandon is in school of has other activities.  Very rarely do I have anyone care for him on the weekends.  Worse than that, this is the first time in 18 years I have taken a whole weekend where I am staying at home.  However, this is what Brandon wants for the future and having baby steps to land there seems like the best way to begin the transition. 

For this last weekend I stayed at the condo and Brandon stayed in Dripping Springs with Ross, one of his aide's.  They went to the movies, had pizza, stayed up late and watched videos.  I didn't know what to do with myself.  I kept thinking that Brandon was here in the condo and for Friday night and Saturday I didn't leave the condo.  Finally, I flung myself out the door convinced that it was okay to at least get some groceries.  Luckily, Saturday night some friends had a dinner party and then I went out to listen to some music with another friend.  It all seemed so foreign to me not having to rush home to relieve someone.  I realized this transition even on the weekends may take me a while to make the adjustment, maybe more than for Brandon. 

The weekend was cut a little short because I have friends from Bastrop moving into the Dripping Springs house after they lost everything in the fire.  They have 6 dogs and a cat and were staying in a hotel.  Two of the animals have burns and they just wanted everyone back together while the figure out what they want to do next.  So my friend Kate, Ross, Brandon and I madly tried to clean up the house enough for the entire family (including dogs and cat) to move in on Monday.  Believe me, I was ready for the weekend to end on Sunday. 

I am already planning the next respite weekend and I am tyring to come up with something where I am already out doing something I cant when I am with Brandon.  Baby steps for us both. 

I also signed Brandon up for "We are the Chorus".  I have been watching "We are the Chorus" for some time and love the spirit of the group. http://wearethechorus.org/  Brandon went to their first rehersal and loved it. I really wanted Brandon to start doing some social activites to hopefully develop friends.  "We are the Chorus" is right down the road from us so it seemed like a natural fit. 

Brandon has been seizure free for two weeks, his lungs have cleared and he really likes school.  Right now - life is good.
More later.
Leah  

Release from Scottish Rite



Dr Birch and Brandon 2007



Today we went to Scottish Rite in Dallas for a re-check of Brandon's feet after surgery and a check on Brandon's back.  We stayed last night in our favorite hotel "The Warwick" and as usual they catered to our every need.  Great room, great service and great price thanks to Expedia. 

It has been a long road of going back and forth to Dallas as we tried to determine why Brandon's feet had become worse and to track the progression of Brandon's scoliosis.  I started this blog to keep track of our trips and Brandon's progress.  I originally thought we would go to Dallas, be told that Brandon would need surgery on his foot, have the surgery, return home and it would be over.  But that is not how going to Scottish Rite works.  I want to remind everyone that Scottish Rite is free to all those kids who qualify for services, and qualification is about the medical condition and the referral from another physician.  Really it is not like any other hospital I have been to or Brandon has been in.  The minute you walk in, it just feels different.  No one asks for your insurance info, money, co-pays and referral like you usually are asked at any visit.  It is all about the care of the kids without the pressure of the finance.  Having worked in health care I am always curious about how this actually works, but I can see there is a very strong community base that supports the hospital.  There is almost as many volunteers as there are paid staff. 

During first year the doctors knew Brandon needed surgery on his foot and told us that the surgery would be a major surgery that would rebuild the foot.  I really didn't understand what that meant but I knew it was going to be intense and complicated.  Unlike the other physicians I had consulted on Brandon's foot, the physicians at Scottish Rite wanted to know the cause of the condition (cavernous foot).  The condition often is associated with more serious medical issues.  They wanted to determine if Brandon had any of these conditions before they repaired the foot surgically.  We spent an entire year in search of a diagnosis.  This is also when we all agreed that Brandon probably does not have cerebral palsy but is perhaps undiagnosed.  We never were able to find a label for the foot condition but it was not for lack of trying.  Finally before surgery, Brandon had a test that measured the impact of the condition on the rest of the body.  This is all electronic and run through the computer.  It is very high tech probably similar to those type tests used on athletes.  The results showed that there was already impact on other parts of the body having to accommodate for Brandon's foot and it was decided to perform the surgery.  Brandon had two very complicated and painful surgeries with very long recovery time. 

But it was all worth it.  Without the surgery Brandon may not be walking today.  With the surgery, Brandon is walking better than he has in many years and for longer periods of time.  The blue team and Dr Birch just did a great job as he says every time we visit.  We all marvel at how bad the foot was and how great the foot is now as a result of this surgery. 

In addition, Brandon has gone from a 30% curvature in his spine (Scoliosis) to 44%.  But the 44% has remained consistent for 2 years.  That is good news.  Will Brandon need surgery on his back in the future?  No one really knows, but for now he is doing great.  So there was a celebration at the hospital today when Dr Birch said "Brandon you are released from Scottish Rite".  Brandon immediately said Dr Birch give me a hug and he ran over to him and gave him a big hug, then he went to our favorite nurse "Emily" and kissed her hand.  I have to say there was not a dry eye in the room.  That is how great they really are because they all do care. 

For me this is great news that we don't have to drive up to Dallas again for another visit, but also scary because Brandon has now aged out of Scottish Rite.  If he does have any problems in the future they will help find an adult specialist for him to see, but I don't think it will ever be as loving and caring as what we received there.  This is also Scottish Rite's 90th birthday.  I know why they have been around as long as they have and we will miss them.  So leaving was a little bittersweet. 
More later
Leah