CTD Film Festival - Cinema Touching Disability

2007 Cinema Touching Disability Film Festival

I've been a little busy the last two weeks and have not updated everyone on Brandon's exciting week.  The Coalition of Texans with Disabilities is having their film festival this week.  This is their third festival.  It is really a great event and I hope everyone comes out to support.  Here is a link to their website.  http://www.ctdfilmfest.org/schedule.html.  This really of an example of "it takes a community".  In 2008, Brandon submitted a film he made during a summer camp he attended.  It was the year of just calling any camp that may interest Brandon and see if they would accommodate his special needs.  To my surprise the "Stunt Ranch" Camp said their would accept Brandon in their summer camp that teaches kids to make movies and to do stunts.  Well Brandon was not interested in the stunts, but he is great at computers, loves music, loves movies and was motivated.  The staff was really great and along with Brandon's aide Kristin Brandon made a great sensitive film about the Beatles.  He typed the words on this device, picked out the music and their even had him carry around the camera.  The group edited it and it was a big hit on the last day of camp.  You can see a link to it on this site. The video is titled "Beatlerama".  One of the camp's counselors suggested that we enter it in the Cinema Touching Disability Film Festival.  I had no idea how to do this, but followed the instructions, Brandon and I had the video copied and we submitted it.  It was not too much longer that Brandon was told he was one of the winners in the young adult competition.  We went to the film festival and he won second place, received an award, got up in front of the audience and accepted it.  It was really a great evening.  I was so proud of Brandon. 

Well move to 2010 and Brandon worked for CTD this summer in his internship program through goodwill and he made another video about the 20th anniversary of the ADA.  He had a great time working at the office and making the video. 

So here comes "the Community".  CTD asked to play Brandon's Beatlerama video on their opening night at Goodwill and also play the 20th Anniversary of the ADA video.  Brandon is thrilled and will be there as one proud film maker.  Tomorrow he will interview with Channel 8 news and may possibly be in the news. 

So this is a big week for Brandon.  He is sooo excited and I am sooo proud.  It really does take a community ........

Leah

Patrick off to Afghanistan

On Wednesday, Brandon's brother Patrick is leaving for his first tour in Afghanistan.  A little scary for Brandon, for me and his mom.  We are so proud of Patrick for all that he does.  He is a great dad, a great son, a great brother, a great friend and a proud soldier who loves his job and protecting his country. 

Patrick was 12 when Brandon was born and was sooo excited to have a younger brother.  He could not wait until the news of Brandon's birth.  He rushed to the hospital about 30 minutes after I delivered and wanted to see for himself.  At the time we were not aware there were any issues with Brandon's health.  He was very concerned as we all waited for over a month as Brandon stayed in the ICU.  When Brandon came home Patrick was not concerned with all the machines, medicines, and how fragile he was.  He was just so glad to have his brother home.  For the next year Patrick lived with us and was a key reason Brandon survived his first year.  He was there for every major event, holding Brandon, playing with Brandon and taking care of him. 

After my divorce from Patrick's dad, Patrick still wanted to be very involved with Brandon.  Patrick's mom and I worked together to make sure that Patrick and Brandon were able to spend quality time together.  Patrick would come at summers, holidays, occasional weekends until he was done with High School.  Shortly after High School and some college, Patrick decided he wanted to join the Air Force.  This was before 9/11.  The Air Force and Patrick were a great match and he has continued ever since.  We still continue to see and talk to Patrick on a regular basis.

Patrick and Brandon have a very special bond.  Really he is one of the few people who really "get" Brandon and Brandon knows it.  He can make Brandon laugh.  He can carry a conversation with him and Brandon still wants to cuddle with Patrick even at 17.  Brandon loves his brother.  When Brandon was 4 years old he had not started walking.  Patrick was coming to spend some of the summer with me and Brandon and I was dreading telling Patrick that I had ordered a wheelchair for Brandon.  When I did, Patrick cried and said that by the time he left for the summer he was going to make sure Brandon walked.  He did not want Brandon to permanently need the wheelchair.  I told him to go for it, not knowing how that would end, but totally supporting his efforts.  At the time we had a long hall in the house with carpet all the way down the hall.  Patrick walked with Brandon all day and into the night every day for the entire summer.  About halfway through the summer Brandon began taking steps.  That was a real motivator and Patrick continued.  By the end of the summer Patrick had Brandon in the front yard walking about 50 steps at a time.  SUCCESS.  Everyone was so proud of Patrick and to this day we have barely used that wheelchair.  It now has a new owner. 

Brandon was there at the hospital when Brandon had his two surgeries and at Dell when Brandon had H1N1.  He just wanted to see for himself that Brandon would be alright.  I could go on and on about other stories of Patrick and Brandon because there are some many other times Patrick has made a difference in Brandon's life.  But I will spare everyone. 

Patrick now has a son of his own and a nephew for Brandon.  His name is Landon.  Patrick is as dedicated to Landon as he is (and more) to Brandon.  We all love Patrick and Landon at this house. 

So Patrick you will be very missed by Brandon and me.  You are key member of our family.  Please take care of yourself, come home to all those who love you and know we are proud of you. 

Love leah and Brandon
(picutres in blog)

One year since H1N1 but always waiting.

It has been one year since Brandon was released from Dell Children's Hospital from his H1N1 illness.  This weekend we celebrated his one year anniversary with other parents and kids also in ICU during this time at Dell Children's.  I am not sure if Brandon remember much while he was there since he was sleeping most of the time, but Brandon really wanted to go.  They had lots of games and the ACC Jazz Band which was really good.  Brandon loved the band and seemed very happy to be back with everyone.  It is hard to believe it has been a year, but I am glad we have not been back.  For me it was a unpleasant reminder of 10 long days of "camping" in ICU.  It also was a reminder of all the great and dedicated staff that was not going to give up on Brandon.   Many of them were at the event. 

For 17 years there has been many times that we are waiting on the result of some test, waiting to confirm or not confirm a new diagnosis and waiting to go forward with the next test.  As Brandon has gotten older I was hoping this would become less.  Really the waiting is the worst part.  When we started going to Scottish Rite the doctors there were convinced that Brandon had one of several conditions they wanted to go forward with testing.  One was a tumor in the brain, one was a neuromuscular condition, one was a genetic condition.  All of those required months of testing and results.  Even when he was in Dell for H1N1 they wanted to test for kidney failure, internal injuries and infection under his leg cast.  There has been a great deal of waiting over the years.  I have to admit Brandon is great at waiting and I am not good at waiting.  It is really me that spends way too much time thinking about the what if's, looking up what I need to know to ask the right questions with the doctors and worrying about the results.  Many times it turns out to be nothing and sometimes it turns out to be something.  If it is something, I go through the same processes every time with a grieving period, a little sadness and depression, a research mode, coming to terms and learning to be okay with the diagnosis.  Years ago I tired to learn not to dwell on the waiting because really I have no control.  It is better to let go of all the stress and wait until you get the call. If it is nothing you spare yourself all the what if's.  I have gotten a little better on the wait, but I have not been able to not think about it at all. 

Brandon has had a series of little illnesses for the last few months.  The latest being what I thought was a cold.  However, Brandon appeared to be breathing faster than usual and breathing harder.  That sometimes indicates the illness is turning into pneumonia.  I have been all over pneumonia for 17 years and I try to get very aggressive on treatment before it gets bad.  I took Brandon to his PCP last Monday.  She took an x-ray and read it but did not see anything.  We left thinking so far so good.  The next day Brandon's PCP called and said that the radiologist compared the last x-ray shortly after H1N1 and this x-ray and found a nodule on his x-ray.  She said it probably was not cancerous but wanted to call Brandon's specialist to discuss.  That is never a great way to start a conversation and began another waiting game for me.  I looked up lung nodule on the information highway.  A good site. http://www.emedicinehealth.com/solitary_pulmonary_nodule/article_em.htm
Probably the nodule is nothing, but I know that this will be a process of checking the nodule over a period of time to determine what it is.  It probably is not cancerous, but it needs to be checked.  It still is hard not to worry.  Just part of being a mom, but the part I wish I could skip.  Next appointment this Friday. 
Trying not to be a worried mom.
Leah

Looking into the Future

I have really been dreading writing about this topic. But for you other single parents out there that have kids with special needs and a child support order this may help you in the future.  Also, forgive me because I had to get a little technical. 

In my last year of Brandon's transition I have really had to deal with a nagging issue that I have not wanted to tackle now or ever.  Will Brandon need lifelong supports and can Brandon live independently and off of his own income.  Although, I am not sure any parent can answer that question at Brandon's age.  I see friends with adult kids living at home and know they are probably asking the same question.  But in Brandon's case this is more of a lifetime question.  Once you come to terms with the answers, then comes the question of what will happen if I am no longer here to help care for him whether he is living with me or living independently.  Therefore, I have been thinking about all possible funding sources for Brandon in the future to assure Brandon can live as independently as possible and achieve his "good life".  When Brandon turns 18 he will apply for SSI disability benefits.  This will generate $674.00 per month for him to live on.   In addition, Brandon's goal is to work and earn money and as long as he is working SSI gets adjusted accordingly.  SSI is extremely complicated, especially if you have a job.  By the time Brandon begins receiving SSI, I will be an expert - but don't tell anyone.  I will blog on SSI because that is the next thing I will be working on until Brandon's 18th birthday.  I finally decided to hire a little help with the process and it will be well worth it.

Brandon also receives $450 per month in child support.  When Brandon turns 18, the $450 is deducted from the $674.00 in SSI payments and Brandon will therefore still only receive $674.00 - $225.00 in SSI payments and $450 in child support. 

After talking to our Trust lawyer, she suggested to maximize payments and have Brandon's child support paid to a new trust specific for just child support payments.  These payments are made directly for the care of Brandon and are subject to state estate recovery law in the event of Brandon's death.  Any funds not used in the trust for the care of Brandon will be repaid back to the state.  This is a special needs trust which allows Brandon to receive the funds in addition to any SSI.  It also has very strict requirements on what the funds can be used to pay for such as welfare, safety, education and comfort, but cannot pay for anything that would otherwise be paid by a government source or insurance coverage, like medical care.  So with the new trust Brandon would receive $674 plus the child support amount currently $450.  As the trust begins receiving money, any withdrawals will require the trustee to account for the funds and assure that the funds meet the trust requirements. 

There is one catch - the child support order must be modified to pay the trust and not me.  I was told this would be very easy and I could just request the change from the AG's office.  I am always concerned when someone tells me something is really easy and in this case it has been anything but easy.  However, I dedicated this year to getting everything set up for Brandon to transition and to allow him to be independent.  This is just one of those on the list.  Remember, first I had to have an attorney set up the trust.  Then I had to get a federal Tax ID for the trust.  Then we had to fund and set up the trust at the bank.  I started this in March of 2010. 

I contacted the AG's office and inquired on how to change the payee from me to the trust.  The person at the local AG's office said just to fill out a change of bank account for direct deposit and that would be all I needed.  That didn't sound right.  I went back to the trust attorney who said that the order had to be modified specifying the name change.  The local AG's office really was not any help so a lawyer friend called the AG's office to try to help us.  The AG's office she contacted knew exactly what was needed, drafted an order, sent the paperwork to me for review, asked for the bank records and I thought that was all we would need.  However, in the process they found out that my ex owed back child support and they insisted that we go before a judge to address both issues.  I shortly received a subpoena.  UGHH.  I showed up for court in August thinking this should be easy.  After 6 hours of waiting (jail cases first, paternity DNA cases second, one spouse didn't show up third) the AG's attorney called us.  He immediately started going over the usual things you discuss in these matters.  Because my ex is currently not employed he lowered the child support to $250.  The AG attorney did not know that Brandon was disabled and I was there to change the payee.  He became extremely distraught when I told him the only reason we were there was to change the payee.  He did not have any of the records from our previous AG discussions, no copy of the order and no trust information.  He refused to make the change without the other party there, i.e. the trust.  I explained to him that I am the the other party because I am the trustee of the trust. The guy was so flustered that he wrote a bunch of information trying to address the payee into the order but refused to change the payee to the trust.  I told him I needed to run what he had thought up and written in the order past the trust attorney.  Therefore, we left with a temporary order and a new court date.  I checked with the trust attorney who said the changes would probably work.  So today we went back to court for another 6 hours to make the temporary order final.  After the agreement becomes permanent then I will need to file a new change in bank account.  I know in the long run I will be happy I devoted about 1 week of this year to this issue but right now it is just one more thing on the list of many things and really it was exhausting.  I hope none of you mom's have to go through the same thing, but I wanted to do this without hiring another attorney for the year and it seemed fairly simple. 

On to SSI and power of attorney and lots of margaritas. 

More later.
Leah

Brandon's video from Internship with the Coalition of Texans with Disabilities

The Coalition of Texans with Disabilities sent out a newsletter today stating "Anywhere, any day:
Rock out with CTD! To commemorate the 20th anniversary of the ADA, CTD's summer intern, Brandon Rummel, created this rock video! Set to Bob Seger's "Feel Like a Number" and the Beatles' "Birthday," the video pans through 20 years of CTD photos. Click here to check out Brandon's fine work!" 

During Brandon's internship at CTD Brandon worked on a video celebrating the 20th anniversary of the ADA for CTD.  The link will take you to Brandon's rockin' video.  Great job Brandon and CTD.  I love the video.  http://www.youtube.com/watch?v=3QkomtfW7lE
Leah

Texas Children's Hopsital Rocks Once Again

Over the years I have taken Brandon to Texas Children's Hospital for various treatments, mainly because the services have not been available in Austin or the expertise is so much more in Houston.  Brandon saw his first pulmonologist in Houston when there was no pulmonologist in Austin.  I truly believe the pulmonologist in Houston saved Brandon's life after a series of life threatening pneumonia's and long hospital stays when he was very young.  The Houston pulmonologist simply developed a plan for Brandon to begin to clear his scarred lungs and to begin to recover from several years of infections.  The treatment and medication was simple once implemented and Brandon has not been hospitalized from pneumonia (except the H1N1) since around 5.  I also took Brandon to Texas Children's to have them develop a plan to help Brandon eat foods through the mouth safely and to improve his swallow.  I video taped the sessions, brought them back for the school, the therapists and the doctors that treat him here.  At age 4-5 Brandon did not eat anything through his mouth and today Brandon takes 100% of food and medication though the mouth, except when he is ill.  I also discussed having a surgery to reduce the amount of saliva, but ultimately decided the risks were too great.  The surgeon in Houston does 100's a year and the surgeon in Austin did about 2 a year.  It really makes a difference. 

I have not been back with Brandon in a while to Texas Children's mainly because of all the visits to Scottish Rite.  Originally, I had planned on having Brandon's surgery for his foot at Texas Children's but the doctor we were scheduled to see ended up taking a temporary position out of the country for 6 months and we decided to go with Scottish Rite. 

Today I remembered why I love going there so much.  Brandon went to the Genetic Clinic within their specialty care center.  The physicians there are associated with the Baylor College of Medicine.  I wanted to specifically see Dr. Bacino (http://www.bcm.edu/genetics/index.cfm?pmid=10580).  Brandon had some tests done previously and they had all the tests from other clinics already at the office.  The visit was to go over all the previous tests, discuss Brandon's condition and determine if we missed anything, needed to repeat anything and if there is nothing else at this time.  Dr. Bacino agreed that Brandon's condition really does not appear to be cerebral palsy and that we have probably not found his diagnosis. 


We decided to go to the next round of tests.  He also videotapes each patient for physician discussions they have each day.  All the physicians will review the tests, Brandon on video to see if they have any other tests they believe should be performed.  He also told us to not give up on him (Dr Bacino) that this was the first series and he wants to run a few others.  Really nice guy and great team with him.  I really believe when we get done with all of the tests we will either find a diagnosis or I can at least feel like I tried my best. 


Only one bad moment for the day.  They wanted a urine sample and Brandon has never been able to give one at a facility.  What I feared was, we would be there all day waiting.  Sure enough we were.  I finally asked if we could get the orders for the urine tests and take them back to Austin.  They agreed.  The appointment was at 9:30 and we left at 3:00.  But I was so relieved that someone is really trying to help that I didn't care.  Brandon was soo relieved we were not going to stay there any longer. 


I really wanted to try to do this analysis before Brandon turns 18, because after 18 Brandon is considered an adult.  The adult physician world is not as great as the pediatric world.  I am not even sure who will be his primary physician and I will probably be traveling out of town more often because very few specialists in Austin take kids transitioning with special needs.  A few of Brandon's physicians have agreed to continue to treat Brandon, but most will not longer treat him after 18.  Even Dell Children's has an age limit of 16.  However, if you show up at the ER they will not turn you away.  Anyway, I just wanted to let everyone know how it went but to support physicians doing it the right way for kids.  Tests should be back in a few weeks and then we go back to review and determine if more are needed.  More later.


Leah

Success on the Job

Brandon, Ross (Brandon's aide) and staff at The Coalition of Texans with Disabilities

Brandon's has completed his 5 weeks working through the Goodwill Training Program and his assignment to the Coalition of Texans with Disabilities.  If you read previous posts the first day was a little rough.  Brandon had to understand the concept of work and how important it will be in the future.  Brandon could not have a better assignment for his first job.  He had very supportive staff who understand his special needs, the difficulty of a first job and the needed encouragement to show Brandon he really can succeed.  Brandon's main project while he was working was to produce a video about the 20th anniversary of the ADA.  A great learning topic for Brandon.  Brandon had to learn to scan pictures, find music for the video (that was easy), type information into his communication device, type e-mails, present his progress at staff meetings, type interview questions for people he interviewed into his device, interview people and produce the video.  The great thing he learned is that people have a hard time understanding him when he talks and it is really important to use his device even though he doesn't like using it.  That will be very important for the future. 

Brandon worked 5 weeks.  For him that was a lifetime, but he really began to enjoy going to work.  He earned $7.25 per hour and a bonus for working on some career projects for Goodwill.  We received information two days before the program ended that Brandon could continue through September with Goodwill, but he already had plans for the rest of the summer and I decided 5 weeks was a good start of a working future for him.  I asked Brandon what was the reason for success in this job and he said work hard.  Brandon also learned a great deal of independence in this job that hopefully will continue in his next experiences.  We will definitely do the Goodwill training next year after he graduates from High School and moves into the 19+ program.  Just a little baby step to independence. 

More medical updates -
During the process of determining treatment for Brandon's cavernous foot at Scottish Rite, the physicians at the hospital believed that Brandon's medical diagnosis of cerebral palsy was not correct.  We had many, many tests for almost two years trying to determine a cause of the condition.  At the end of the tests performed at Scottish Rite they referred us for genetic testing at Baylor in Dallas.  We began testing in Dallas and continued testing in Austin with genetic testing and biochemical genetic testing.  Some of the tests came back positive or inconclusive.  A diagnosis of cerebral palsy indicates a "static condition" that does not get worse.  Once the onset of cerebral after the event causing cerebral palsy the condition does not get worse.  But the physician's at Scottish Rite believe the foot condition is related to a progressive condition and will get worse, including multiple surgeries on both feet to allow Brandon to walk.  I stopped pursuing a diagnosis after Brandon's second surgery and his bout with H1N1.  We just did not have the time to devote to the testing and the research involved in many of these conditions.  Most conditions that have been indicated are very rare and have resulted in many hours of research and e-mails and list serves.  It can be exhausting.  One of Brandon's abnormalities is a genetic deletion of a series of genes called 7q.36.3.  Believe me, I never knew there was so much information on such a rare defect.  There is actually a researcher in Canada that does nothing but research 7q genes.  Each unique condition usually has some kind of research in some area of the world.  If you are into this kind of thing it is pretty fascinating.  Anyway, I finally decided that before Brandon turns 18 I wanted to complete the testing on Brandon to determine if there is a known diagnosis at this point.  I am very aware that there may not be a diagnosis and his condition may remain unknown and still titled "cerebral palsy", but I have to say that I tried.  So next week we travel to Houston to the Genetic Clinic at Texas Children's to have them review all the records, run any additional tests and try to finalize everything that is known at this time.  The clinic is very advanced and is known for their latest research. 

More news -
Brandon has a new puppy "Dizzy Ms Lizzy".  She is a chocolate lab, very sweet, a people person and is 7 weeks old.  In fact he is lying right on top of my feet as I tyoe this post.  I will post a picture of them soon.  Brandon has some medical issues (nothing too serious) right now so he is laying low this weekend to recover before he begins his camp next week.  Lizzy slept on Brandon's lap on the way home from Waco where we picked him up from Peggy (Patrick's mom).  Thanks Peggy for making this happen. 

Also, on the last note of concern - Patrick, Brandon's brother just heard he will be deployed to Afghanistan early Sept.  Brandon is of course very concerned.  However, we are all very proud of Patrick and his service to this country.  He can look forward to many care packages from us in the future.  I found out how to send and already have some volunteers to help gather items.

More later.
Leah