Best Special Olympics Ever

Brandon had Special Olympics basketball today in San Marcos.  Brandon has been participating in Special Olympics since he was in middle school.  He loves it because he always wins.  So do all the kids.  It is not often that Brandon has people cheering for him, paying attention to him and doing something athletic.  So whatever the sport is, Brandon will participate.  He loves it. 

I love Special Olympics because Brandon loves Special Olympics.  But I also love that Brandon gets exercise and socialization, two things he does not get enough of.  Today was another Special Olympics event.  Special Olympics is run mainly by volunteers.  For the parents it can be a little frustrating because often the events run very far behind, the weather can be unpredictable, and sometimes they are very unorganized.  As a former manager that drives me crazy.  Last year Brandon's track meet lasted for 6 hours and he only had two events.  But like most parents, I cant complain because again - Brandon loves this. 

I have to give credit today to HEB, Special Olympics staff and the coaches.  Brandon was told to be at the event at 10:45.  There was a wreck on the way to the event and we were a little late.  To my surprise they were running ahead.  So we walked into the event.  Within 5 minutes Brandon was doing his three events and we were out of the gym within 30 minutes.  Plenty of time for the outlet mall. 

Brandon earned a gold medal (he was the only one in his category but don't tell him).  I was real happy that it was a short 30 minutes, very organized, and the HEB volunteers made all the athlete's feel great.  And the best - Brandon was very happy.  You know he loves Special Olympics.  So really a great day. 

On to track.

Later Leah

Single Mom and Small Family

I have to say sometimes it really sucks to be a single mom from a small family.  Today and many other days like today can be challenging.  Last night Brandon started having some sniffles and a little chest congestion.  I tried to think it was just allergies, but I finally relented and took Brandon's temperature and sure enough it is a full blown cold.  Not a horrible one, just bad enough that he should not go to school and he needs someone pumping medicine down him to make sure he does not get worse.  For 18 years I have been juggling those times when Brandon is sick, trying to find someone to care for him while I still work, and making sure that person knows how to care for Brandon.  It is really a challenge.  Most kids at 18 can stay home by themselves but when Brandon is sick it is even more important to have someone stay with him. 

This week at work is the worst with the legislative session active, executives coming into town and lots of meetings I set up.  So there is no way for me to take off work.  I started calling everyone that could possibly take care of him at least for some part of the day or 1 day.  My brother had to go to work, some people could do some of the day, but there were gaps.  I was starting to panic. 

This brought back memories of a day a many years ago when I had a "gig" on a Saturday night at a place by the lake.  Yes, I was originally a musician who for a while tried to live off musician wages.  Brandon was little - around 4.  I didn't have anyone to stay with him that day and I called everyone I could think of.  In the end, I brought Brandon to the gig and he sat on my foot pedal for most of the gig until someone in the audience I knew convinced him to sit with him.  It was a very stressful night. 

So back to today - I called a friend of mine that lives near here and she came up with a retired teacher that lives nearby.  However, we could not find her number.  She drove over to her house and now I have her coming over tomorrow to stay with Brandon.  I really owe one to my friend for going the extra mile. 

I know it is still challenging with a husband and siblings, nieces and nephews, but it is times like these that I wished I was from a large family.  I am not ever sure if Brandon can be left alone for long periods of time, so as Brandon finishes school and has more time at home this will become even a larger issue. 

I am probably feeling even more stressed than usual because at the same time I am trying to find care for my son, my 89 yr old mom moved into the Alzheimer's unit in assistant living.  My brother and I have been spending alot of time hoping this transition will work.  Her memory has really diminished and it was a tough decision to move her.  Jim and I are a little worn out right now.  She became sick about 2 months ago, went to the hospital from her assistant living facility, then to skilled nursing.  At that point she did not remember the assistant living apartment and our options were not great. 

I am blessed to have a large network of friends that support Brandon and me.  Thanks to all of you who worked through this with me today.  Now, just hope Brandon is well by Tuesday. 
Leah

A little step towards independence



My clean guest bedroom downstairs

This Christmas holiday Brandon and I agreed that he was going to begin becoming more independent.  We agreed that Brandon would move into the bedroom upstairs and I would turn the bedroom downstairs into a guest bedroom. 

I built this house over 13 years ago when Brandon was very ill and still had night nursing and was connected to many machines every night.  I purposely built the downstairs so Brandon and I could live downstairs with some privacy and built the upstairs so someone could live upstairs and help with Brandon's care, but both would have their private areas.  The upstairs has a bedroom, bathroom, small office and a workroom/playroom.  I think it a little over 700 Sq feet.  I also had insulation placed around the entire upstairs area so it would be more quiet.  At the time I wasn't sure if I would need someone to live with me to help with Brandon's care.  The space has actually been a lifesaver. 

While I was building the house, Brandon and I lived with my brother at his big house.  It worked out well for both of us because we didn't drive each other crazy and Brandon really loves my brother.  So when I moved in this house, my brother moved in soon after.  He helped with Brandon and was a great Uncle influence for about 7 years.  He also had his art studio in my garage which soon was completely filled with all of his supplies where I kept a small area for Brandon's durable medical equipment.  Eventually my mother and Jim both built houses next door, along with his studio.  http://www.rummel.1hwy.com/  His studio is shown on the "link" page.  Yes one big happy family on 4 acres.

Somewhere in the middle of this, I decided to home school Brandon and turned the workshop upstairs into Brandon's home school.  We had several teachers and many UT students coming in and out all day long.  There were two computers upstairs - a Mac and a Dell computer.  Lots of devices being tested to determine what was the best way Brandon learns.  Once Brandon started school again we kept the upstairs as Brandon's computer center and learning area. 

Before Christmas, Brandon and I decided that the upstairs is actually similar to an apartment and Brandon could live more independently upstairs.  The goal is for Brandon to sleep in his bed all night, wake up to his own alarm, pick out his clothes independently, deal with his own laundry and have his own "guy" space. 

I didn't realize what a project this would be for the Christmas holidays.  First we had to go through everything in Brandon's room.  We cleared out 5 bags of clothes, toys that are too young, books and even furniture.  We moved all of Brandon's furniture out and the room was a teenager mess.  Brandon's aide Ross and I cleaned the room, painted, moved furniture all Christmas holiday to assure Brandon's room was usable and the guest room was clean and ready for guests.  Brandon's room was previously painted like the Yellow Submarine on the walls (yellow) and Lucy in the Sky with Diamonds on the ceiling (navy blue with stars and the moon).  We painted it a dark tan with a cream ceiling.  Drastic difference (see above).

I really was looking forward to the move to have a little "Leah" time, but I have quickly found out that this is as much for me working through this transition as it is with Brandon.  It became clear very quickly how much I do for Brandon that really he can do for himself.  I always tell the aides that work with him "everything you do for Brandon is one less thing he can do for himself".  But now I have to face that I may be the worst offender.  I pick out Brandon's clothes, wake him up, get his medicine, wash his clothes and fix his food.  Brandon probably can do most of this with some nudging. 

I am also "in tune" to Brandon's sounds and watch for Brandon's seizures.  I wont be able to monitor as well as I do now.  So I have searched the web for a few things to help me with the transition and to still assure some safety.  First the upstairs is deeply carpeted on purpose to help in the event Brandon falls.  I did that a while back.  But Brandon is a little messy and I did not want to ruin the carpet too quickly, so for his new room I ordered a rug and water proof padding to protect the carpet below.  I also found a great monitor that has a two way radio (like when Brandon turns on the TV at 4 am).  ( http://www.amazon.com/gp/product/B002UDGVZS/ref=oss_product) It is also a video monitor and sound monitor so at night I can listen for any strange sounds.  I also found a simple reminder system that allows us to program up to six reminders. (http://www.amazon.com/gp/product/B001DTYJ04/ref=oss_product) If this works I can get something more complex, but I want to program in this device times to wake up, time to go to bed, time for medicine, time for a bath, time to pick out your clothes for the next day.  That's a great start. 

So we will see how we both transition through the next nine months as Brandon prepares for his 19+ program that will help Brandon learn the skills and work with him to find a job.  All baby steps for now, but important steps for the future.  I have a feeling Brandon may transition better than me. 

More later.
Leah

Brandon's new room. Its all about the Beatles and Elvis.

Brandon's 18th Birthday

Happy Birthday Brandon.  Today Brandon turns 18.  We are celebrating until Christmas.  Brandon's network of friends will get together next week for a big birthday bash and we are having a family get together.  Of course Brandon wants all things Beatles and has been trying every sneeky method to find out what he is getting, including asking his aide to find out.  But I am on to all those tricks. 

It is hard to believe that 18 years ago today Brandon was born.  Brandon was my 5th pregnancy.  Four others ended in miscarriage.  I could hardly believe that this time I was acutally having a baby.  We went to the hospital on Dec. 2, 1992 to deliver Brandon 1 week prior to his due date.  The ob/gyn induced labor and I stayed all day long in the hopsital but nothing happened.  By the end of the day we decided to wait one more week and deliver on Brandon's due date of Dec. 9th.  Brandon had been monitored throughout my pregnancy because it was considered a high risk pregnancy.  For the last three months I went in weekly for fetus monitoring and almost delivered a month early.  On Dec 9th 1992, my ob/gyn tried to induce again and finally broke my water.  The delivery was quick.  Brandon came out after two pushes.  His apgar was 8.8 (which is very good).  Everyone went home for the night leaving me and Brandon alone in the room.  I was sick with a cold and asked the nurse to take Brandon back to the nursery.  I was so tired. 

The next morning, the nurse who worked for the ob/gyn came in my room early to check on me.  We had become friends after my miscarriages.  She told me that they were hooking Brandon up to some IV's and the pediatrician would be in soon to talk to me.  My ob/gyn came in a little later and I told her I was waiting on the pediatrician to come and talk to me.  She went to check on Brandon and never came back to my room.  I later found out she closed her practice for the day because she was so upset.  I was also hooked up to IVs  due to my cold so I could not leave the room.  My husband came in and said the nursery door was locked and the blinds were drawn.  He could not see in to check on Brandon.  We waited for hours not knowing what was going on with Brandon. 

Six hours later the pediatrician came in.  I specifically selected her because she was a mom with four kids,  had a good reputation and seemed to "get me".  But I was really wrong.  The first words to come out of her mouth was "We were not sure your son had a brain, but we checked and he does- we just dont know how much of a brain he has".  She went on probably describing why she thought this and what her plans were, but I didn't hear anything past her first sentence.  I could not imagine how my son had an apgar of 8.8 the night before and when I woke up the next day he "may not have a brain".  Actually the next month in ICU was many one sentences that I heard and nothing else.  I was really in shock.  They called in Dr Ghodsi (neurologist) within hours on the first day.  Brandon stopped breathing over 100 times a day, was having seizures, had no swallow or suck and had very low muscle tone.  No one knew exactly why, but everyone was working hard to treat Brandon.  Over the next month, I was called several times to the hospital with several close calls.  Brandon was a fighter.  After about 1 month in the hospital the doctors felt Brandon was stable enough to come home.  There was nothing I wanted more than to finally be able to hold Brandon, care for him and have him home.  We had to check back into the hospital before his release to learn how to handle all the machines also going home with us and how to take care of Brandon. 

We had to feed Brandon through a tube down his throat.  He was on an apnea monitor because he still stopped breathing.  We had to suction his secretions about every 2-5 minutes or he would choke.  His medicines also went through the throat tubes and he had oxygen.  I had no idea what we were getting into bringing him home with no help except our family.  By the time Brandon came home I had started back to work.  I am not sure how we made it through the first year because there was very little sleep, not so great care by us and there were a few professionals coming in and out weekly.  But somehow through this very rough time Brandon survived. 

At a little over one, Brandon became eligible for the Medically Dependent Childrens Program, a Medicaid waiver program.  At the time, I had filed for divorce, my mother was helping with the care of Brandon and we were paying someone over $1600 per month to help.  The child care, the copays and noncovered benefits amounts were more than I was taking home in my state pay and I was trying to take care of Brandon by myself.  The program was a lifesaver.  I found out that Brandon was much more involved than I realized and he quickly began receiving 24 hour care, much better care than I was capable of.  Not everyday, but enough hours I could still work and I could get just enough sleep. 

Over the years Brandon has had 100's of professionals work with him, either nurses, aides, doctors, teachers, therapists, hospital staff, and volunteers.  I have had some of them tell me that Brandon could never walk, never talk, need to be institutionalized, not live until 18, the list goes on.  But we also have had really great people through Brandon's 18 years who have really believed in Brandon.  And that is why Brandon is doing so well today. 

Brandon did learn to walk, did learn to talk, did learn how to use a communication device, did develop a sense of humor, did learn to swallow and eat food through the mouth and did learn to read .  Brandon has never done any of these things naturally.  He had to learn how to do all of these.  He learned all of this with alot of help from the "village".  It really does take a village to raise a child and I believe that is really true in Brandon's case. 

Now that Brandon is turning 18, I can really say because of all that hard work brandon is happy, smart, funny, loving, sensitive, ready for that big world, and loving that he can vote.

So to come from a child that "may not have a brain" to the great kid he is today I truly can say "Happy Birthday Brandon.  Today is just the beginning of that great life you have prepared for.  Believe in yourself and surround yourself with those who love you and support you and you will grow and continue to be happy." I also want to thank the "village" for all your help and support.  You all know who you are.  Brandon would not be who he is today if it had not have been for you. 

I love you
Mom.



Brandon signing Mama



In Las Vegas going to Beatles "Love"

Brandon Update

Well it has been one medical thang after another the past few months and the kind I really hate.  The wait and see kind.  I think I wrote earlier that Brandon had a nodule in his lungs.  For a month Brandon has had 3 nebulizer treatments a day followed by CPT (chest physiotherapy).  The specialist believed it was a mucus plug.  So I told Brandon we needed to get aggressive to "unplug" the nodule.  After another xray, we received confirmation that Brandon's chest had cleared.  He still does not sound great at night and we are still using the nebulizer for night treatments but he is great during the day. 

While in the middle of trying to clear Brandon's lung, Brandon flunked his quarterly EKG.  I tried to ignore it for a few weeks but it came back in full force with some urgency to see a heart specialist.  In the meantime, a heart specialist reviewed the EKG and stated that Brandon may have right ventricular hypertrophy.  I looked this up and it doesn't sound good and can be related to his lungs.  So we were still nebulizing while I called around about the heart thang which could be related to the lung thang.  I haven't mentioned this but Brandon had an impacted bowel this summer and he has not 100% recovered from the damage.  So we are also dealing with this and I wont go into details.  But I may need to have a plumber on retainer.  So while dealing with the heart thang, the lung thang and the bowel thang Brandon starts having seizures.  They have been going on for several months on and off, but I have not noticed it much in comparison to everything else until the last two weeks when he collapsed at school and then could not walk.  They have started to happen everyday.  At first I wasn't sure if Brandon was trying to get out of class but I cant deny the symptoms which are hard to make up and Brandon swears on his Beatle Bible that he is telling the truth. 

So the good news, Brandon's cardiologist reviewed the EKG against our last visit and believes we are fine.  Yea.  The lung nodule is gone - yea.  The bowel thang continues but is manageable.  But the seizures seem to be indicating that Brandon's current medication of tegretol is not fully working now that he is a teenager and I am discussing new medications with Brandon's neurologist for Brandon to add.  Scary.  We have been so blessed for almost 17 years with very few seizures.  They have been mostly controlled except when Brandon grows quickly or he is very sick and there is a breakthrough seizure.  When Brandon was 2 he was on phenobarbital.  It stopped working and we tried to ween him off that medicine onto tegretol.  It did not go well and we ended up in the hospital to make the change of medication.  I am hoping this will be smoother.  I really feel bad for Brandon having to go through these bad seizures while we try to find the right formula.  He is a real trooper.  So we are really hoping for all of this to get cleared up and no more new things to deal with each day.  Brandon of course is just looking forward to his birthday and Christmas and asking Santa for all things Beatles. 

In the meantime I am in full force learning SSI and power of attorney getting ready to apply and complete on Brandon 18th birthday in December.  More on this coming up. 
Leah

Brandon in the news

Brandon was interviewed at News 8 Austin about his films and the upcoming film festival.  http://www.news8austin.com/content/entertainment/movies_and_film/274642/film-festival-spotlights-disability-in-cinema

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