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.

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

I Had a Great Day Mom

Well, we have thought positive thoughts, had many prayers from many of you and tried not to stress over Brandon's latest lung problems.  I have to believe all of those helped.  This week Brandon had a lung scan and his lungs have cleared.  We started an aggressive medication regiment and CPT on Brandon's back and it made a big difference.  Brandon sounds great and he is very happy. 

Brandon started school this week at Westlake High School's Adult Transition Program.  It started out a little rough with several seizures.  I think the school, Brandon and me were not quite prepared on what to do if Brandon has seizures out in the community.  But by the end of the week the seizures ended.  Brandon will be working in the afternoon's, working on grooming first thing in the morning and working out at the YMCA in the mornings.  Brandon really loves this program so far and today he came bursting into the condo and said "I had a great day mom" very loudly, with a big thumbs up and a great big smile on his face.  I have to say I had a great day today as well.  After the bus picked up Brandon, I walked on the trails behind our condo in the Barton Creek Greenbelt, worked from the condo and was greeted in the afternoon with a very happy son.  You really can't have it much better than that.  I wish for many more great days in the future. 

More later
Leah

Geez Enough Already

Well it isn't very often that I say enough already, I feel sorry for me and Brandon or geez how much more.  But I am really just about there today.  Of course it does not help that the cat does not like the condo, the dog is barking and whining, Brandon keeps asking when we are going "home"and that Brandon continues to have seizures. But this is a little more than I want to deal with. 

Friday I asked Brandon's PCP to do a chest x-ray on Brandon in anticipation of Brandon's visit with his pulmonologist, Dr Fullmer.  Perhaps it was mom's intuition or mom's trying to plan ahead or listening to Brandon sounding congested for months, but we met with Dr Fullmer today and it turns out Brandon's left lower lobe of his lung has collapsed.  The weird thing is that Brandon is not sick and has not been sick for months, just a little congested.  This may indicate that Brandon is aspirating. Dr Fullmer is normally not very negative when it comes to Brandon, but today he went on and on about more tests, more medicine and more possible diagnosis.  I just have to say it.  IT IS JUST DEPRESSING.  ENOUGH ALREADY. 

Okay I said it.  I'm better.  We will get through it and it may be a margarita night. 
More later. 
Leah

"And Then?...."

It has been a busy summer for Brandon and me.  Brandon has worked at the Dripping Springs Library, started a personal shredding business, attended camp at the Texas School for the Blind and Visually Impaired, participated in the VSA Arts transition program, went to the beach for 1 week and has endured the entire summer with me trying to get our new condo liveable. 

This is our last week in Drippping Springs where Brandon has lived most of his life.  My brother (the one who lives in Italy) is moving into our house in Dripping Springs and next week we move into the condo one week before school starts.  It has been a long summer or gutting the condo and repairing it.  Last week we stayed at the condo one night.  Brandon loves loves loves baths.  There is only one bathtub at the condo.  Knowing that Brandon loves baths, I brought all his favorite bath items to the condo.  Brandon jumped into the bathtub. I started the water, put all his bubble bath stuff on him and in the water and he was very happy.  I went into the bedroom and in about 3 minutes I heard the water turn off.  I went to check on him and there was no water coming out.  I asked him why he turned off the water and then realized that he did not turn off the water, the water just stopped.  The bathrooms are really barely usable because of all the construction.  So I am hoping by the weekend almost everything will be working. 

After we left the condo this week, I told Brandon that we were not coming back to Dripping Springs to live after this week and we would be living at the condo.  Brandon's as usual insightful response was "and then?".  I had to laugh because for the first time in a long time I could not answer what will happen after we move into the condo or the "and then?" of the future.  I just know that for right now this is the best place for Brandon.  It may drive me a little crazy because I love working in my garden and being outside my house, but I will adjust with walks to Zilker. 

The whole point of this move is for Brandon to learn how to live as independently as possible, learn how to find his place in his community and to find a meaningful job where Brandon can be proud of his accomplishments and build relationships.  It is really tyring to build a good life for Brandon to be the best he can be just like all of us want a great life. So I am not really sure yet how to answer the "and then?" but hope Brandon enjoys trying to develop his own "and then?" for now and in the future. 

On another note, Brandon has been having more seizures and I have been able to see them directly, learning more about them (from the five books I am reading), and trying to determine how these will have an impact on this life, especially this next phase of his life.  I have determined that most of Brandon's seizures happen at night while he is asleep and in the morning after he is awake (around 9:00 to 9:30).  The interesting thing is that they also happened at school around the same time.  I think Brandon's seizures are worse in intensity than before.  Because of this I am trying to get Brandon into the Blue Bird Clinic at Texas Children's for a second opinion.  Brandon needs to get the seizures under control.  The more he has, the worse they can get. 

I am writing this because I want everyone to understand the issues surrounding transition, even medical transition for kids who have become adults.  I am not sure if the Blue Bird clinic will accept him because he is now 18.  He was already turned down by Scottish Rite's neurology clinic because he was not an established patient for that clinic and he is not 18.  There is really not a great plan for kids like Brandon as they transition into adulthood for medical care, especially in Austin.  He is actually very lucky because his pediatrician will continue to see him until he is out of school (22) and his gastroenterologist will see him indefinitely.  But that is because there really is no one to treat him otherwise.  So I will update everyone as will try to find some great second opinion options. 

So on to our move.  Brandon does have some exciting work opportuinites coming up so I will update as those progress.  I will also give an update on Brandon's network. 
More later
Leah

Success

Brandon went to camp for 5 days and 4 nights at the Texas School for the Blind and Visually Impaired and it was a great success.  The first day I bought him to the school and the school had the sign-in process very organized with a 10 step sign in process.  It went very smooth.  Then we went off to his dorm.  Waiting in his room was the Sgt Peppers Vinyl album opened with the picture of the 4 Beatles.  Brandon grinned with happiness.  Brandon then met one of the volunteers for the week and he was a local musician who also loves loves loves the Beatles.  I knew it would probably be okay for the rest of the 5 days.  The TSBVI has really changed since I lived close by.  It has it's own swimming facility, own therapy center, own health center and tons of staff and volunteers. 

The first night and the next day were very rough for Brandon.  He called me several times screaming and crying wanting to go home.  I became very close to picking him up.  But by Tuesday I did not hear a peep.  I was worried when I picked him up that he would be a wreck.  But just the opposite.  He was singing, happy, talkative and glad to see me, but clearly happy he was there.  One of the staff asked him if he would come back next year and he said yes.  A big thumbs up.  Pretty brave of Brandon to stay with strangers without the benefit of understanding him speak for 5 days.  I am really proud of him. 

SO BIG SUCCESS.  Looking forward to next year already.  We have some transition and job news upcoming.  More later. 
Leah

A Little Mommy Time a Little Closer to Independence

Brandon and Hannah at Camp Chit Chat

Sunday, Brandon heads to the Texas State School for the Blind for a 5 day, 4 night summer camp.  He will stay on campus and have five full days of pure fun. At least I hope he thinks it is pure fun. 

Although I travel some for my job and occasionally take a few days of fun travel, Brandon has not left our house for those type of trips.  My brother Jim or some of Brandon's aides fill in while I am gone.  Brandon's routine is not disrupted too much.  The last time Brandon attempted to go to camp and spend the night at a camp, was many years ago at Camp Camp.  Camp Camp has great camps for kids.  Each week of camp is dedicated to some specific topic or diagnosis.  Brandon went 2 years to the week long camp concentrating on kids using communication devices.  The camp was called Camp Chit Chat.  Cute! The last year he went to the camp, he left with his aide Hannah.  They drove down to camp, checked in and spent the first night.  The next day for the first time in a very long time, I took a little mommie time and went to Wimberley to walk around, shop, eat and listen to music.  I was with a friend and within the first hour of my Wimberley day the phone rang.  It had been raining on and off all week.  It was Hannah telling me that they were moving all the kids to higher ground in the cafeteria.  All the kids would sleep in the cafeteria until the water went down in the sleeping areas.  I could hear Brandon in the background screaming.  He didn't sound happy and the whole thing did not sound good.  I called the Sheriff's department in the county of Camp Camp.  The sheriff said that the camp was flooded and there was no way in or out of the camp.  However, if the weather cleared the road may recede enough for someone to get out.  Otherwise, they were expecting worse weather and the kids would not be able to get out for the rest of the week.  He told me if it was his child he would try to get him out if the weather clears enough to drive on the road.  I came home immediately.  A few hours later he called me back and said the road was clear enough to get out and that Hannah and Brandon needed to leave right then before the next round of rain.  Hannah packed up Brandon and they left.  It was a long trip back with my whole family sitting by the phone.  Hannah and Brandon made it back safe and the weather just continued to get worse.  To this day if you say Camp Camp to Brandon he starts screaming.  So we have not done another "spend the night" camp since then.

Brandon is now 18 and any opportunity for transition is good.  Brandon was selected to participate in a camp held at the Texas School for the Blind and we jumped on the opportunity.  Brandon has been many times to the School for the Blind programs and really does like them.  Therefore, he is not too stressed about staying at the facility. 

I have to admit, I have no idea what I will do with myself for 5 days and 4 night, but I am sure each day and night will be packed with things you cant really get around to doing when there is more than just you.  I will miss my little buddy, but I am looking forward to a little mommie time. 

We do have some job and move updates, but I will update this blog after Brandon finishes camp.  Brandon and I had a great time at the Texas Parent to Parent conference.  I attended the 2 day transition portion of the conference and Brandon attended the teen transition camp.  I gave an update on Brandon's network and became refreshed in my belief of a great life for Brandon in the future. 

More later.
Leah

More graduation picture.

Graduation at Last

Tonight Brandon finally graduated from High School.  Well, we are calling it a graduation.  It is actually that he walked across the stage with his peers thanks to a bill requiring schools to recognize all kids at graduation.  Brandon wont receive his certificate of completion until he completes the 19+ or adult transition program and has learned how to transition to being an independent adult.

Tonight Brandon walked across the stage and received his certificate of attendance from Board member Colleen Jones. This was very special to me because Colleen and I served on the Board of Texas Parent to Parent. So it was very touching to have her hand Brandon his certificate. After receiving his certificate, Brandon raised his hands in the air and took a bow and the whole Westlake High School class cheered. It was a special moment I know he will not forget.

Brandon has really been "in school" since birth.  When he was born he stayed in the hospital for over 1 month.  When we came home it was not long before Brandon begin receiving ECI (early childhood intervention) services at home through Easter Seals.  They came several times a week.  Brandon also had private speech therapy.  Brandon also had a nurse come by about once a week through the MAP program to check on him.  Everyone started Brandon on a program to get better.  Lot of hard work building muscle strength, sitting up, working swallowing muscles, cognitive skills, the list goes on and on. 

At 3, Brandon started public school in AISD.  He received great socialization, basic education such as reading and math, a communication device, along with OT, PT and speech therapy.  At grade 1 we moved to Dripping Springs where Brandon went to school until 4th grade.  In 4th grade after a major legal battle with Dripping Springs I removed Brandon from public school and began home schooling him at our house.  I hired a special education teacher and tons of UT students to catch Brandon up on TEKS, help him become proficient on his communication device and determine his exact level of education.  After 18 months Brandon was at the 4th grade levels for English and reading and about the 1st grade level for math.  He was typing full sentences on the communication device and was reading and writing. 

I enrolled Brandon in the Eanes school district where he started in middle school.  Brandon worked very hard all through middle school.  It was during the home school experience when I began to understand the extent of Brandon's learning challenges.  We also found out that Brandon had a visual problem called cortical visual impairment.  This is where the brain interferes with vision. 

We continued with Eanes through High School with Brandon beginning work programs this year, his senior year.  I would like to say it was all easy and time flew by, but for me it was all very hard and time went very slowly.  I think Brandon may think the same thing.  Learning is so much harder for Brandon with all of his challenges due to his health, physical and visual challenges and his cognitive abilities.  Brandon is very smart, it is just his body that holds him back.  He understands everything you and I say.  He just cant respond easily to you and I. 

So for Brandon to be at this point in his life is a major accomplishment.  For Brandon to be able to read, type full sentences on this device, take history classes, participate in film classes, play drums in the school band, sing in the choir, participate in drama, take sign classes, perfect those English classes - those are all very brave things for Brandon.  But completing all those things and making it to graduation with all the surgeries, the seizures, H1N1, the list goes on - is to me inspiring.  It is really hard for me to ever complain about not wanting to do a project or work out in the garden or to move a bunch of boxes when I see Brandon every single day work so hard just to be Brandon and yet really never complain.  He has such a great attitude in life and it is a blessing and an honor having Brandon as my son.  I am really proud of him today with this major milestone in his life - graduation from High School and walking across that stage.

Looking back Brandon has come so far and I would not have wanted to miss a thing.  Congratulations Brandon.

Dr Rummel says - You can do anything for 8 days.

Today I told Brandon that he could do anything for 8 days.  Of course to a kids 8 days seems like a lifetime.  I can understand how 8 days can seem long when you can't eat anything through the mouth and your peers still can.  Smelling all those foods and just wanting that macaroni and cheese when you cant have it is torture.  Brandon had his swallow study and upper GI Friday.  We have had a series of visits with his specialists this week to get the results.  Brandon passed the swallow study but just barely.  The speech therapist said he was at high risk of aspiration.  He also passed the upper GI but "Dr Rummel" does not believe it was read correctly by the radiologist.  The report said Brandon swallowed the barium for the GI study and in fact the barium was put in through the g-tube.  We are re-looking at the results.  "Dr Rummel" does not think he did that well on the upper GI.  The specialists believe Brandon should not eat through the mouth at school - 8 MORE DAYS.  He can eat very safe foods 100% supervised with me at home and pedisasure through the g-tube.  The specialists also are worried about a possible stroke or bells palsy.  We are going to have a MRI to check.  "Dr Rummel" is not as worried about a stroke or bells palsy, but I do think it is a good idea to recheck any brain activity given the uncontrolled seizures Brandon has had over the last year.  Brandon also had another chest x-ray today to see if the pneumonia has cleared and has another appointment with the pulmonologist tomorrow.  OKAY ENOUGH ALREADY.  How do I even work.

Anyway, bottom line - Brandon will be heavily restricted in food choices over the summer with hopes his lungs will clear and his swallowing will improve.  "Dr Rummel" has high hopes he will be back to 100% by the end of the summer if not before.  I have had a discovery of a few new devices to help with checking Brandon's lungs.  Seventeen years ago I received a pulse oximeter for Brandon that weighs about 10 pounds.  They now have a new, portable, electronic pulse oximeter that fits on the finger and provides plenty of information.  The one I bought is about $100 and well worth it.  I am loving that.

For Brandon it probably feels like a lifetime without his favorite choices for now.  As a mom who hates having to make those mom choices- for now no food at school, very limited food through the mouth with 100% supervision and lots of love and support for Brandon this summer. 

We have lots more to share in the coming weeks about Brandon's transition, but for now - just lots of hugs and kisses. 
More later
Leah

My little Foodie

Brandon at feeding therapy

When Brandon was born, he did not have all the natural reflexes that most kids have at birth.  He had no ability to suck and no ability to swallow.  He had no ability to gag when something went into his mouth.  He did not have any of these natural abilities.  But of course everyone wants their kid to eat and thrive.  So for 4 years Brandon had intensive "feeding therapy".   Leaving the hospital after birth we had a therapist come several times a week to help strengthen muscles, help develop a swallow and try to help develop some gag reflex.  But by the end of the year we were not successful.  Brandon had lost so much weight from being tube fed down his throat that we had to make the decision to have a g-tube placed in the stomach and at the same time have a surgery called a fundoplication.  The surgery does not allow food to go directly down to the stomach helping ease any reflux that kids may have.  However, the surgery is a major surgery and most kids end up in ICU to recover.  Brandon was in the hospital for several weeks trying to recover from both procedures. 

After placement of the g-tube, we went to a feeding specialist team in Houston and a team in Austin to start a feeding program to again develop his ability to eat food through the mouth.  We did this intensive therapy for 3 more years.  But again Brandon was not actually eating anything through his mouth. 

I bought some land in Dripping Springs when Brandon turned 1 with plans to build a house.  Brandon and I went to the land every weekend to work for several years getting it ready to build.  One day we were by the creek.  I brought some juice to drink and left the bottle next to Brandon.  While we were sitting by the creek Brandon grabbed the juice and tried to drink.  He would not let go.  He was clearly telling me he wanted to drink through the mouth.  I decided that 4 years had been long enough.  I asked all the therapists to meet with me and decide how we were going to get Brandon eating within the next year.  Every year I take on one big issue with Brandon and decide even though there are many issues we could address, I would 100% concentrate on trying to tackle one.  So this was the year of trying to get Brandon to eat. 

After getting all the therapists in one room, we decided if this was going to happen, Brandon needed to be admitted into the rehabilitation hospital and have intensive therapy.  The plan was to have him inpatient for at least 1 month.  So Brandon and I packed up our stuff and started the month long hospitalization.  It was gruelling.  Intensive therapy all day for Brandon, building strength, building his swallow and trying different foods.  But by the end of the month Brandon was eating about 18 ounces of food safely through his mouth.  His favorite was chocolate pudding.  He was a mess but there was not a dry eye in the place when he finally could get the taste of food in his mouth.  Brandon loved it and finally knew what he was missing.  Imagine not tasting anything through your mouth for your entire life, but smelling food and watching other people eat. 

We had to be very careful the next few years to build his strength in swallowing, build the amount he was intaking and with a goal to have Brandon eating enough food to maintain his weight and thrive.  We worked as a team with his school, his aides, his therapists, his doctors to make this transition a success.  Finally around age 6, Brandon was eating enough food to maintain his weight and loving it.  However, because we had to be careful of what types of food his could eat his diet was not meeting all his nutrition needs.  Therefore, Brandon also learned to drink Pediasure to supplement the unusual diet of peanut butter, chocolate pudding, mac and cheese and goldfish.  Brandon learned more and more food choices for the next few years. 

When Brandon was in 3rd grade.  I received and emergency call from the school that they had just called 911 and that Brandon had choked.  They were trying to perform the heimlich on Brandon and were waiting for the ambulance.  I headed to the school to meet EMS and found Brandon now breathing, but it was clear that he had aspirated on his food.  EMS and the school revived Brandon.  I took him home and he started getting worse from the aspiration and we ended up in the ER.  The next week we did a swallow study to see if there was any damage from the lifesaving treatment from EMS and the school, and if there were any changes in his ability to swallow.   Brandon flunked the swallow study.  For the next year we had to go back to 100% food intake through the g-tube again.  Brandon was very unhappy and was motivated to strengthen his swallow and get back to eatting.  After another year of intensive therapy Brandon again started eatting through the mouth safely.  But I had some frank conversations with his specialists.  The safest thing for Brandon would be for him to never eat through the mouth again.  However, there are some quality of life issues involved.  Brandon really loves food.  Brandon would be really unhappy never having anymore food through the mouth.  So I made one of those parent decisions (you know the ones that you hope are right) and decided "quality of life" over safety.  I stopped focusing on making sure Brandon has every nutrition group.  I stopped worrying whether Brandon should or should not drink Pediasure.  I just decided Brandon could eat whatever he wanted to eat either through the mouth or through the g-tube.  I would supplement for nutrition with pediasure.  This was really about what Brandon wants. 

Brandon is now 18 and after my visits this week with the pulmonologist and the pastroentolgist everyone is again concerned that Brandon is aspirating.  He does have many of the symptons.  Respiratory issues, frequent pneumonia without major temperature, having loss of air at certain times and now three times Brandon has had very low oxygen rates.  The doctors have asked me to stop feeding Brandon through the mouth until we can do some more testing.  Those will happen next week.  We are hoping Brandon's lungs can recover long enough so that he can resume eating, but at this point we really dont have many answers.  I am hoping as a mom I dont have to make that decision one more time about "quality of life" vs "safety".  you know those parent decisons that you hope are right.  I also will feel bad this week for Brandon that he cannot eat food through the mouth for another week. 

I have to give a big thanks to Holly and Marissa, Brandon's school nurses for helping us through all of this the last few months.  Without them I am not sure what I would do. 

So think good thoughts for his test next week.  We will send an update soon.

Leah

Still Driving Down that Road

Yes,still driving down that road to recovery.  Brandon had another scare at school.  This is the second scare in a few weeks and the second scare where Brandon could not breath.  It is starting to worry me and I dont get worried that often.  This week I had to go to Houston to work.  After last week's scare I sent everyone information on how to get in touch with me and all my back-ups.  However, wednesday there was not a great deal of coverage.  Sure enough, I get a call from Brandon's school that Brandon was complaining of not being able to breath.  He looked in distress. His oxygen saturation rates were 78 and his heart rate was high.  Having oxygen rates at 78 is bad.  When Brandon was young we had orders to call EMS if Brandon oxygen rates fell below 85 and this was below 85.  This is also the second time Brandon has appeared to struggle breathing. 

I called the doctors office and they wanted EMS to go to the school.  When I called back to the school and after Brandon breathing treatment was complete his rates had gone up to 88.  Most of us walk around with oxygen rates between 98-100.  So 88 is not that great either.  The nurses at the school said they were not hearing oxygen moving in the lower lobes of the lungs.  I finally got ahold of my brother and he agreed to go get Brandon and take him to the doctor who was willing to see him. 

So once again Brandon still has pneumonia even through he has completed his medicine.  We switched him to another antibiotic.  We are going on three weeks of lung problems and I hope this antibiotic clears up Brandon's lungs. 

No special olympics track tomorrow for Brandon.  Brandon really likes track the best.  However, Brandon is very excited to be able to watch the Royal Wedding tomorrow.  You know it is in "England" where the "Beatles" started their career.  Brandon may show up in my bedroom tomorrow morning at 5:00 am and turn on the TV to the royal wedding while he is going around the house turning on all the TVs. 

I just hope he clears up soon so I can stop worrying. 
More later
Leah

The Road to Recovery

Brandon and I have been a little under the weather the last two weeks.  At first I thought it was allergies with all those great tree pollens with the trees in full bloom and the wind blowing more than usual.  But by the end of last week I realized it could be some kind of illness.  I thought we had recovered by Sunday last week.  I sent Brandon to school on Monday and I went off to my usual meetings.  I was in a meeting Monday afternoon when my phone started ringing over and over.  I finally realized this and saw it was the school.  I called them back to find out Brandon was in the nurses office with 104.7 temperature.  I have no idea what happened from 8:00 am to 3:30, but is was a downhill spiral.  I rushed to the school finding Brandon fairly lifeless.  I called Brandon's PCP and they said bring Brandon directly there.  We rushed to their office.  That reminds me - I HATE AUSTIN TRAFFIC.  This all took over an hour.  By the time I made it to her office, Brandon's temp went down to 103.  I was very worried that he would have a major seizure while I was driving him around.  We got to the office and Brandon looked much better.  After several tests and xrays we determined that Brandon had pneumonia.  Man, I was so off on thinking he was fine when he went to school.  So we started aggressive breathing treatments and antibiotics.  The next day I started to feel bad and I went to the doctor and received the same medicine.  So it has been a long week with Brandon and me recovering at the house.  He is much, much better now and will probably be ready for school Monday. 

Monday, I close on the new condo where Brandon and I will be moving.  It has been a complicated closing with setbacks every few days.  We have one more hurdle to overcome before closing on Monday.  If all goes well, we will be the proud owners of a condo in the Eanes school district.  We will spend the next few months updating the condo and move in this summer.  It will be nice to not have to worry about a yard for a while, be able to walk the trails around Zilker from the condo, swim in the pool and have much less to clean, but I will miss the country.  Brandon will be fine wherever he lives as long as he has his crucial items - the Internet, the Beatles music, the TV (he kind of has a little crush on Selena Gomez), goldfish (the snack) and pediasure.  Oh - and his mom.  The only scary part of the move for me, are all the back-ups I have established where we live currently.  If I need to work early or stay late I have people lined up to help.  I won't have that support network in town and will need to establish it.  But that is part of a mom's job is the challenge of scheduling on a daily basis.  We will get through this. 

So we are on the road the recovery.  Recovery from our illness and moving to the next chapter of our life as Brandon graduates and moves into learning about life in the working world.  We are ready for the move and ready for the challenge. Wish us luck.
More later
Leah

I Feel Some Changes Coming On

When Brandon was born I never thought about school districts, community, living independently and inclusion.  I was just trying to figure how to care for Brandon and hope that he stayed healthy.  Brandon was eligible for ECI (early childhood intervention) benefits soon after we left the hospital. Those services were maintained until Brandon turned three and he was eligible for services through the school system.  At the time Brandon and I lived behind DPS in Austin.  I loved that house.  I had a sound proof room for all the music I had going on at the time, it was paid off and it was close to everything.  But what I didn't like was the school district.  Where we lived did not have school services for kids at the age of 3.  I never really thought about the school district when we bought the house many years before Brandon was born.  AISD offered services in several school districts surrounding the area.  We choose the elementary school program in northwest hills.  I knew this program would be fine for a few years but I needed to make a decision about where we should live and where Brandon should go to school before kindergarten.  I thought about living in Austin at various school districts.  I thought about the Eanes School district and then I looked at those in the suburbs surrounding Austin.  At the time several districts in the suburbs had class action suits concerning special ed students or they did not have a great reputation. 

I decided that in the long run it would be better to live in smaller community where people would think of Brandon as part of the community for his life and would be more willing to be part of his solution to living independently.  The thought is if Brandon was in the school with his peers who's parents were also part of the community people in the community would get to know him and be more comfortable supporting him in the future.  Plus, I also believe a smaller community is a safer environment.  There is always the problem with transportation but smaller communities always seem to come up with solutions.  I still believe this for Brandon's future.  But what I didn't know is that smaller community schools do not have the resources for some kids as complicated as Brandon. 

So Brandon and I sold our house in town and built a house in Dripping Springs after I did a great deal of research on school districts.  Dripping Springs really tried to educate Brandon as best they could but they just did not have the expertise for a kid with multiple challenges.  What they did do great was a sense of community.  Brandon was known by all the kids in his class by name and he participated in all the same events his peers participated in.  The school really didn't have the resources to separate kids, so some form of inclusion naturally happened.  However, it became clear that the school just did not know how to educate Brandon and did not have the resources to address his multiple challenges.  We ended up in a lawsuit with the school over the school's ability to perform a psychological evaluation on Brandon.  The school wanted to do this evalution on their own, but refused to provide me with the names of the tests the school would use to do the evaluation.  Some tests are not appropriate for kids who are non-verbal and we wanted to make sure those were not used to evaluate Brandon.  The school refused to provide the names of the tests and they filed suit against Brandon (there is now a law that requires the schools to provide the names of the tests).  We were in courts for 1 1/2 years until I finally realized I was trying to get a school to educate Brandon in the way I felt he needed to be educated but the school was never going to be able to meet his needs.  It was a very sad day when I removed him from school and began homeschooling him. 

For the next 18 months I hired a special education teacher, many UT students and other volunteers.  We tested Brandon's levels and found he was below grade 1 on some subjects and about 18 months behind on others, so we started all over in his education and the TEKS and by the end of 18 months he was reading at a 4th grade level, he was using his communication device in full sentences and he was ready to go to a new school.  What he was missing was socialization.  For a kid like Brandon who is non-verbal that is very big.  We also found out during that period of time that Brandon has vision problems which made learning so much harder. 

I looked around at surrounding school districts and my choices were Southwest Austin, Lakeway and Eanes.  I still was of the belief that a small community is where Brandon should ultimately be, but this was a temporary setback for 6 more years.  I looked at renting a place in Eanes or buying property after I compared the districts.  We found a place in Eanes with a mobile home that needed a great deal of repair but was liveable.  The elderly woman who owned the property had a child with cerebral palsy who died at age 16.  She really wanted us to have her property and we really liked her.  We closed in two weeks.  Brandon and I fixed up the property, and had it completely furnished and ready for when school began.  Brandon started school in the Eanes school district in middle school.  I cant really say enough good things about his education.  He has vision services, speech, use of his communication device, he has been in band, choir, drama, film classes and special Olympics.  It really was night and day difference between what he was receiving in Dripping Springs academically.  But I do think Brandon has lost the sense of community.  Eanes' model tends to isolate the kids in their own classes with the exception of about 1 or 2 semi-inclusion classes a semester.  We gave up the community for education for 6 years.  Brandon will graduate as a senior in May.  Over the six years we stayed less and less on the property in Eanes, but have owned it, paid the bills in it and payed taxes on it.  I have provided transportation for Brandon to and from school and we have worked to maintain the Eanes property. 

After Brandon graduates he will continue with the 19+ program.  The 19+ program is a program designed to transition young adults into the community, help them become as independent as possible and train them for jobs for adulthood.  This is the most intensive program Brandon will have access to as a young adult.  He will have three years to work through the transition and then he is on his own.  There are other adult programs but none as intensive as these last three years of school.  So I believe I need for Brandon to be in the best program possible to meet his needs. 

As Brandon moved through this year I re-approached Dripping Springs because I still believe a smaller community is a better fit for Brandon for support and job opportunities.  I found out that Brandon would be the only child in Dripping Springs 19+ program and that he would most likely get his job skills and independence training on campus at the high school because we would be the only kid and because of lack of resources for one child.  The Eanes 19+ program has over 30 kids in the program and is housed off campus.  In Eanes Brandon is already working off campus every single day.  We will be able to develop his own schedule which will include exercise, socialization, job training and independence.  However due to budget crunches Eanes has questioned our residency status for next year's eligibility.  So we need to make some tough choices.  The most powerful input I have received was from another parent who told me that Brandon only has 3 more years in which to get Brandon his most intensive training and I really need to utilize the next 3 years to give Brandon to most opportunity for the future. 

Reluctantly, I have made the decision to move into the Eanes School District for possibly the next three years.  I will still have our place in Dripping Springs, but will try to rent it out because I really love our place here.  I put a contract on a condo close to Zilker a few weeks ago.  It is within walking distance from the walking trails, has a great swimming pool, is in a secure complex and has a fabulous view of the greenbelt.  I was the best option for living in the district.  I am still working through the details of the closing, but I am fairly sure we should be able to close in early May and get the place ready to move in over the summer.  I know - I will own three places, two of which I don't really want to own.  Sometimes life takes you in strange directions.  I also know that to some of you, you may think this is very extreme for Brandon's access to education.  I really wont feel good about myself unless I can say I have done everything I possibly can do to help Brandon be a success for the future.  What will we do in three years?  I have no idea for now but I will let you know. 

So for now I am seeing some changes in the future and I am thinking they are only for the best.  I still believe in community and don't know what is next in the future.  So stayed tuned.

Leah

SSI and Power of Attorney

Well I said I would post about getting the Power of Attorney for Brandon completed and the SSI process.  I hope this will help some other parent trying to go through this.  If you are reading this, please know that this is once again probably meant for parents trying to go through the process.  It is fairly technical.  I have talked to many parents to try and get the best tips while going through the process and I have found that applying for SSI and guardianship/POA are a once in a lifetime process that parents quickly would like to forget.  So I will probably not remember much about this in 1 year from now but for the moment it is fresh on my mind. 

Power of Attorney.  I struggled with whether to do a power of attorney for Brandon or go through guardianship.  I still have many people telling me that down the road I may have to consider guardianship.  But I also have a power of attorney for my 89 year old mom with dementia and it works very well for medical and financial issues.  I discussed both options with our trust attorney who has an adult sibling with disabilities.  She helped me decide.  Brandon does understand everything you say to him within reason and can write his own signature, although nobody knows what it says.  That could be a Rummel trait.  The question is would a judge be willing to take away rights from Brandon if he can make some decisions on his own.  So I decided that Brandon was able to consent to give me power of attorney rights and we would go with the option for now.  If down the road I have to consider guardianship I will go back and consider the options, but for now Brandon has his full rights as an adult, he can vote, date, get married (scary) and make full decisions.  I can help him with those decisions when they involve medical and financial. 

Because I went with this option Brandon is now his own employer with the CLASS consumer directed program.  He had to apply for an employer identification number (Tax ID) and sign many papers.  I am his designated representative for purposes of this CDS which he did consent. 

Social Security Process -  Now for application for SSI.  I did have to think about whether I wanted to go forward with this application until Brandon is living independently.  I decided to move forward right after Brandon's 18th birthday for several reasons. First, applying between 18-22 allows for an easier rate of approval.  If you read the SSI information persons totally disabled since birth have several categories where there is almost automatic approval.  After 22, it is harder to prove that the disability has been a lifetime disability.  Second, I am starting to think that one day I may want to retire and I need to start thinking about Brandon as any child that will need to provide for himself so at retirement I can provide just for myself.  Third, if something happened to me tomorrow no one else will have to go through the process of trying to get Brandon's records together and go through all these processes.  He would transition much smoother.  Also, for purposes of benefits Brandon will be classified as SSI disabled meeting the income guidelines. So I took one class, had a private consult, talked to many parents and read alot on how to apply.  I think the best information was on the SSI website and then the information I got from other parents was great.  So here is where I started. 

Application for consideration of medical conditions - First, you now apply on line and there is a two step on-line process.  This is the link to entering general information and getting the process started.  http://www.socialsecurity.gov/applyfordisability/.  This will ask for basic information about the person with disabilities.  After you complete this step you need to go to the Adult Disability Report. https://secure.ssa.gov/apps6z/radr/radr-fe 
This is where you enter all the medical information, the names of the physicians or other providers to contact and some information about how that applies to work.  I read through all the SSI info and found several key facts.  There is a list of illnesses that with medical proof will qualify a person for benefits.  The first list is the compassionate allowances.  http://www.socialsecurity.gov/compassionateallowances/  Once a person is diagnosed with one of these illnesses a person automatically qualifies for the medical portion of the decision.  If you are working on applying, take a look at the list.  If they work for your situation then you want to focus the names of your physicians and other providers to just confirm this illness and really no other paperwork is required. 

Severe Medical Conditions - Brandon does not meet the definition of compassionate allowance.  So the next category is the listing of medical conditions that are so severe they qualify a person for approval in the medical category.  http://www.socialsecurity.gov/disability/professionals/bluebook/listing-impairments.htm  I went through all the conditions with several friends (this was though to read through for me and listing all the bad things Brandon has been diagnosed with).  My friends were very helpful working with me to go through each category and identifying Brandon's conditions.  We quickly discovered that Brandon easily qualified in four categories.  He has many others but they are not on the list and not worth spending time listing and identifying the doctors.  I concentrated the application on those four conditions.  I am not sure my process is the usual process, but I took off a day to complete the application.  I finished answering the questions on part 1 which is the general application and started on part two.  I needed to look up some providers on part two and stopped for the day to go through the many boxes of records to find a physician's name.  However, the next day someone called for Brandon and I realized it was the SSI office.  They asked if I could complete part two the next day so I finished part two a little faster than I thought I would.  In the meantime, they sent a release form for Brandon to sign and asked for any records to be sent in at the same time.  I had been told don't bother sending records, but I decided to send two records.  The school's 3 year assessment which was very thorough and a medical record identifying Brandon as having cerebral palsy at 9 months old proving that his condition was diagnosed at birth.  I returned the form and the records and the next week received a call asking me questions about how the medical conditions applied to Brandon's ability to work.  The SSI worker completed a form with these questions based on our conversation. It came in the mail a few days later and I signed and sent it back.  The form has many questions about Brandon's condition and how that would apply to his ability to work.  She called back and asked a few other basic questions and said the whole thing had gone to a medical director and I should have a decision in two weeks for the medical portion of the application.  However, she hinted that Brandon was approved for the medical portion.  Brandon was approved for the medical part of the application at that point. 

Financial Consideration - Within a few days I received another call to come in with Brandon's financial records.  Brandon and I went to the SSI office to provide the financial documents.  They asked for his bank records, information on the trust accounts and information on life insurance benefits.  The trust accounts make the determination more complicated.  The SSI worker went through Brandon's accounts, Brandon's trust accounts, asked information on my financial information and reviewed the trust documents.  Remember Brandon cannot have more than $2000 in assets.  The most time consuming process was the review of the trusts.  The SSI worker sent both Brandon's child support trust and his family trust to the main SSI office for review by their attorneys.  I guess the wording was correct, but in the approval information I was cautioned that when using any of the trust money it must be reported and possibly considered as income if not following the guidelines from Medicaid.  Here are the links they referenced.  https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120201 section 1 (letter) and https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120200 Section E1.  Hope this helps someone in the future.  So Brandon was approved for the financial portion.

My Fair Share - Lastly, I added that Brandon will be paying his fair share of household expenses and food.  I provided information on the average rental costs in our area for rental of a room or 1/2 of an apartment or house.  I also calculated costs for electricity based on information from the electric company about costs per square foot.  I also included the average costs for Brandon's food based on receipts I have kept for several months.  I calculated the total costs on a form and had Brandon sign a contract stating he will pay his fair share of costs.  The SSI worker was surprised I had these documents, but accepted the documents.  If approved for the "my fair share" Brandon will receive the full amount of benefits of $674 versus a deduction of 1/3 monetary deduction of in kind support I am providing .  This is very important.  I did not want to come back and battle the 1/3 amount.  Brandon was approved for the full benefit based on the information I provided and the signed form by Brandon.  However, the full amount will not kick in until two months after approval (June). 

Timeframe - Brandon will begin receiving benefits effective 1/1/11.  I applied on 12/10/10 for the medical and was approved for medical on 1/19/11.  Then immediately following we completed the financial portion and we just received approval on 3/8/11.  One more point.  I had to make a few calls to move it through the process with the SSI worker during the review of the trusts.  Otherwise they were bugging me to complete the paperwork.  Also, because I applied 1 day after Brandon's birthday they counted my income for the first month.  I should have waited for the following month to apply.   

So I don't think it is necessary to hire an attorney for the SSI process.  The SSI pages really walk you through what documents are needed and the process.  The key is to identify conditions and those physicians to verify.  In Brandon's case they took the information from the school report as their evidence and did not ask for any additional information.  The whole process was relatively painless.  I will have to begin keeping records of Brandon's expenses monthly so there is accountability and record keeping. 

Medicaid Eligibility - Lastly, I was told by a provider that Brandon would briefly lose Medicaid during this transition.  In fact I have received 4 letters from Medicaid indicating tht Brandon has lost Medicaid eligibility.  However, I talked to HHSC staff and Brandon lost Medicaid under the regular CLASS classification but gained coverage under SSI coverage with the CLASS program included.  The problem is that you will not receive a letter indicating that coverage was added for SSI.  I just had to take the word of the HHSCstaffer.  The are looking at this to see if there is a better process.  Also the letters are awful.  It is hard to tell what they are saying about termination of benefits, definately not in six grade level reading.  I recommend if this happens to you, call to verify coverage did not get dropped.   

Brandon and I are going through many transisiton issues right now which I will post at a later date, but it has been a little stressful for the last month.  We are working through them and hope to have some decisions soon. 

Leah