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

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

Brandon's first paycheck

He's Growing Up

The last few weeks have been full of a glimpse into the future for both me and Brandon.  I am not sure who has been more surprised.  Me at seeing Brandon grow just a little more into an adult and in some ways loving it, but in other ways wanting to protect him from the world; or Brandon learning a little about life in the future.  Brandon started his job with Goodwill this week.  Last week was spent preparing paperwork, meeting with Goodwill and preparing Brandon for work.  I have learned over the years that Brandon's perception of events are often not what he has expected even if I try to explain prior to the event.  This was no exception.  Brandon went to Goodwill on Monday for training.  This is really a fabulous program focused on transition from high school to work for kids with special needs and kids at risk.  They help develop job skills for the future.  This year Goodwill received funding for this summer training program. I really cant say enough good things about the program and it is a fabulous opportunity for Brandon.  Brandon did well at training but may been a little overwhelmed at all the other kids in the program.  Ross his aide went with him.  For any of you parents reading this you may want to consider this program in the future. 

Brandon was assigned to The Coalition of Texans with Disabilities.  Complete coincidence where he was assigned and a surprise to my friend Dennis, ED of the Coalition and me.  However, Brandon could not have been assigned to a better place.  The first day was really rough.  Brandon had figured out that if he refused to work he would get fired and then he could just stay home and be on the computer all day.  Brandon just refused to work.  It was a tough day for everyone.  That night I decided to talk to Brandon about jobs and the future.  Of course I thought I had already covered most of this, but it is all how you explain things with Brandon.  Brandon and I talked about the future and that either you work or you are in school.  Those are really the two options.  I think Brandon was shocked that he will work for a very long time and no one had really told him that.  The other thing we talked about was the simple thought about work.  "Work hard" and "everyone is happy".  For some reason that stuck with Brandon and the rest of the week went much better.  Brandon has been walking around the house saying "Work hard, be happy".  Whatever works.  This week I also completed Brandon's new trust accounts and had to work with the bank to set them up.  So while I spent time at the bank I brought Brandon with me to set up his first bank account.  This was a little scary for both of us, but Brandon was very excited to see his name on a bank card and to learn that he will make almost $600 which he will put into his bank account and be able to spend some of it on DVDs.  As part of his job this week he went to the Capitol to learn a little about advocating for people with disabilities.  He couldn't stop talking about the Capitol.  A possible future lobbyist.  So a good week for Brandon's first job experience.  More later.  Leah

We've been busy

It has been a busy few months for Brandon and me.  At the first of the year Brandon started his personal network of friends.  I think I have blogged about this previously.  But the main reason for developing a personal network for Brandon is to have more than me having the knowledge about everything Brandon, having a great group of people help brainstorm ideas to support Brandon's great life and a support network to find resources for the future.  I have probably stated why we wanted to start a network for Brandon better in previous blogs.  Since our January meeting a smaller group has formed.  We have met twice and will meet again in June. Our main focus is on the good life plan Brandon developed in Jan. with the larger group.  The group worked with Brandon's main goal of wanting to be the King of Rock n Roll.  Not an easy task, but one we are all taking very seriously.  Since Jan., the group has helped Brandon discover the Goodwill summer job training program, found Brandon a Rock n Roll camp, helped re craft his special needs trust, helped with a modified child support order and a new trust, found a set of drums, sent exercises to help with Brandon's fine and gross motor issues, helped work through choosing guardianship or power of attorney after Brandon turns 18 and started the application for SSI for when Brandon turns 18.  I also have found through the group some great transition trainings, webinars and connections in the community.  Brandon is also starting to socialize with a friend network.  Brandon has developed his own Beatles Blog, emailing some friends and starting to deal with his own laundry and his room.  We are also planning a plane trip to see Brandon's brother Patrick in August.  The network has really been helpful already and having the plan developed has made it much easier. 

I few updates.  Brandon was selected for the Goodwill Summer Work Program and will be working with Dennis Borel at the Coalition of Texans with Disabilities.  Dennis and I are friends, but this placement was completely random.  This will be Brandon's first job and he and I are very excited.  I am excited because I think this will be a great positive first job for him.  He is excited because he will earn $7.25 per hour and can buy lots of CDs and DVDs. 

Also I found through the network the VSA Teen Apprenticeships in Arts and Drama Summer Program.  Brandon has done this program before and it is really great.  It is through VSA Arts of Texas (http://www.vsatx.org/ ) and he really loved it. 

Normally I would not put this detailed of personal information on the web but I wanted to share with other families trying to find resources for their kids. 

Lastly some medical news.  Brandon and I went to Dallas to Scottish Rite this week to check his foot.  Everyone believes the foot operated on is doing great and the other foot does not need surgery at this time.  Great news for us.  Scottish Rite does want to follow Brandon's scoliosis further and took several x-rays before we left.  We will not need to return for at least 6 more months.  Great news. 

Next week Brandon will go to the University of Houston for a final vision assessment for the DARS vision services.  This will determine if Brandon will meet the Texas definition of blind and receive transition services through the vision section at DARS.  Think good thoughts.  The program is really good. 

Lastly some bad news, after my last blog Brandon had a seizure and became disoriented at school.  He also had an extreme headache and was off balance.  It continued most of the day and out of precaution we decided to have Brandon checked at Dell Children's Hospital.  For those of you who are fortunate enough to never had to go to the Children's ER, this means at least 6 hours in the hospital (minimum).  It took 1 1/2 hours to get there and it was almost 6 hours before we left.  Brandon appeared to have developed a bad migraine.  He was given several medication to get rid of the migraine.  Once the migraine was gone Brandon's balance came back.  It was a little scary because it looked similar to a stroke.  All is well now and we are back to non-stop Beatles.  I knew Brandon was really sick because he didn't listen to any music or talk the whole day.  Unusual for him.

More later
Leah

Happy Mom's Day

Brandon and I had a great mom's weekend.  We took my mom out to lunch Saturday at the Mandola Vineyards in Driftwood with my brother.  Brandon gave me my mom's day wish of sleeping late today and we had a nice lunch with my friend Kate and Brandon in Dripping Springs.  Basically a great mom's day weekend.  Brandon came in this morning and said "Happy mommies' day mom" and there have been many hugs and kisses all weekend.  I have always told Brandon that the great thing about being a mom is that mom's get hugs and kisses whenever they want.  He loves that and so do I.  That is the great thing about Brandon he never gets too old or too tired of hugs and kisses. 

I look back over the years at all those mom moments I wish I could change.  The time I gave Brandon as an infant an adult dose of my cough syrup thinking it was his seizure medication and had to stay awake all night to watch him; the time he broke his foot and I thought it was just a sprain after a visit to the doctor only to find out a week later he had really broken it and in the meantime I made him walk on it at Patrick's boot camp graduation.  I couldn't understand why he was so whinny and then feeling really bad when I found out it was really broken.  The time we were at our property clearing brush by the "swimming hole" when Brandon slipped in and I found him at the bottom of the swimming hole (not more than a few seconds but scary), and you know all those times I forgot lunch for school, didn't quite get the schedule right for the day or two sitters show up at the same time.

Then I look back on all those great moments like the first steps Brandon took at 4 after I just received his new wheelchair; the first time Brandon ate food through his mouth at 5 following1 month of rehabilitation in the hospital.  Brandon's first Christmas in ICU after his birth with all the great nurses caring for him; the first time I heard Brandon say "mama" and I could understand him; those great Beatles duets we sing in the car; the day the doctor's said Brandon is taking more food by mouth than through his g-tube; the day I finally was able to have all machines unhooked to Brandon at night; the time when Brandon did not need any more night nursing at age 7; the 18 months of home school when I learned how smart Brandon really was; the first sentence Brandon formed on his communication device; the first time Brandon voluntarily spoke after the class I took helping me to learn how to communicate with Brandon; the time Brandon accepted his award for the Beatles movie he made that won second place at a local film festival and all those good comments from people who have been touched by Brandon's sweetness.  But the best thing I can say as a mom is that Brandon is happy and for me that is a great success.   

With the exception of the few scary illnesses in Brandon's life I would not change a thing from the last 17 years.  Brandon has really taught me what is really important in life and how to appreciate those things, a lesson some people never get to experience. 

So for all you mom's out there, especially you single mom's - we hope you had a "Happy Mommies Day".  You deserve it. 
Leah

In Motion

Brandon's Softball Toss

Brandon at Special Olympics

What's in a label

Well it has been a while since my last post.  Brandon and I are sharing an aircard for internet access.  I have it during the day for work and Brandon uses it at night and the weekends.  I had to barter for this little time tonight.  But that is all for another blog post about kids in the age of he internet.  I think of this as the "Beatles" period of our lives where we pretend like it is 1964 and when the Beatles did not have the internet.  That seems to be working.   In the next two months we will be connected to Roadrunner and we will all be happy. 

But back to the topic of the night.  Brandon, his network of friends and I have been working on Brandon's transition from high school to an adult.  I will give you all an update on our first network meeting we held last month on a new post.  But one of Brandon's network members suggested that I have Brandon assessed through DARS vision department for services.  I looked up the services online and found that there is a great transition program.  So I made an appointment for Brandon, brought him and all of his paperwork on his vision issues and met with DARS last week.  The case worker was very nice but it quickly became apparent that once again Brandon's diagnosis of cortical visual impairment does not fall easily under the standard definition of "blind".  Brandon must meet several of he requirements to be considered "blind enough" to be considered for services. 

This is been a little bit of a sensitive subject with me and for Brandon for 17 years.  From birth I have been having all kinds of professionals working with Brandon tell me that Brandon appears to have a visual impairment.  I always listen, ask where should I take him to get assessed and they usually suggested an opthamologist.  Brandon has been to a least 5 opthamologists al over the state in his 17 years.  They all say he has strambismus, good acuity (can read liner notes on all those CDS and DVDs) and that structurally there is nothing wrong with his eyes.  So for 12 years I really believed that Brandon had no vision issues and that all those professionals were wrong. 

Just a little history, when Brandon was younger were went back and forth to the Texas Children's hospital to visit their feeding program.  I always felt sorry for dragging him on such a long trip and thought it would be fun to go to the zoo before each visit.  I would take him to the zoo and show him all the animals and Brandon would stare at the sky.  He was happy but by the time we left each time I was frustrated that he refused to acknowledge the animals.  Of course I thought I was taking him because he wanted to go. 

A little more history.  Brandon has broken his foot 5 times and his wrist twice.  They all happened when he did small things.  The first one was at a friend's house.  Brandon and I were on his deck which was about 2 inches off the ground.  Brandon slid off the edge of the deck and started screaming.  I had no idea he had just broken his foot and I could not believe he did not see the edge of the deck.  The other incidents were very similar.  Then there was the time at a friend's party when Brandon walked right into his swimming pool with his clothes on.  He did not see the pool.  At the time I was frustrated that he just walked into the pool with his clothes on, but later it all made sense. 

After ending the lawsuit concerning placement with Brandon's school district years ago, I decided that I would homeschool Brandon for a few years.  I hired a psychologist to do a complete assessment on Brandon to tell me his strengths, weakenesses, where he was in level for reading, math etc.  The psychologist was highly recommended from the disability community.  I took Brandon to see her for over 3 months.  At the end of 3 months she called me and asked to meet.  We went over all the tests she performed.  She had determined that when information was presented to Brandon that was not visually challenging or when presented when Brandon was physically well Brandon did very well on the assessments.  We went over her examples.  But when information is presented in a visually challenging manner or when Brandon was tired or ill Brandon completely flunked the test.  The assessments did not make sense unless Brandon was dealing with a significant visual impairment.  So once again I had another professional refer me back for a vision assessment.  But this time I went back to where I should have gone initally - to Texas Parent to Parent to talk to another parent having the same issues.  Texas Parent to Parent referred me to a mom who also worked at the Blind School.  I was blown away by what she recommended.  She said Brandon needed to be assessed for low vision.  She referred me to the best assessment team in Texas at the University of Houston.  It took several months but Brandon was assessed and it turns out that he does have significant visual issues.  Brandon cant see down (hence the broken feet).  Brandon cannot see visually complex fields - like the animals at the zoo against all the other visual fields with the animals.  Brandon is red/green colorblind.  Brandon had significant strambismus and overall Brandon has cortical visual impairment.  I added a link on cortical visual impairment.  Brandon has these issues due to neurological impairements, not because of anything structurally wrong his his eyes (except strambismus). 

The parent also referred me to a women who performs functional visual assessments to determine how CVI affects Brandon in daily life such as school and home.  She came to our house.  She placed colored balls in the kitchen for Brandon to find.  Brandon was very excited because you could tell for the first time someone got him.  So he was anxious to please.  She asked Brandon to find the balls on the kitchen counter.  There were several items on the counter with the balls but clearly in plain site for you and me.  Brandon never found the balls.  The visual field was too cluttered.  We removed a few of the items on the counter and placed the balls again.  Brandon looked for over 5 minutes and finally found the balls.  The last test was placing the balls on the counter with nothing around them.  Brandon found them quickly.  That really explained the zoo. 

For years I have been trying to get Brandon to use the cumputer as a means for communcation.  But after this assessment I understood his frustration and mine.  Brandon cannot look down at the keyboard and then back at the screen.  That visual transition does not work for him.  Number 1, he cannot see down and number 2, he lost his placement on the computer screen.  It al made so much sense to me after both assessments.  From that date forward we have adjusted his school work, I make sure there is nothing on the ground that Brandon may fall over and I work with Brandon with his careful, slow, methodical, safe daily movement through life.  Brandon knows his limitations visually and is very cautious in his every movement. 

After the diagnosis, I quickly became aware that CVI does not neatly fall within the established definition of "blindness" in Texas.  I applied for services to work with him independently and was denied previously.  The schools accept the diagnosis and work with him, but receiving other services has been difficult. 

So here we are again trying to force a label into a set of significant visual issues.  I have done it for 17 years, but it gets frustrating.  I am sure for Brandon it is even more frustrating.  I do know that Brandon can greatly benefit from the DARS vision transition services offered, but I am not sure I can convince DARS Brandon is "blind enough".  Brandon and I are meeting with his opthmologist next week to once again utilize my lobbying skills to convince her Brandon is "blind enough" for services.  UGHH.  It is all about the label and not the kids. 


More later.
Leah

Its Hard Letting Go

Today was the beginning for Brandon starting his own life - a good life - becoming independent, working and making his own decisions.  But as a mom it is hard to let go.  However, I know it will lead to Brandon's good life.  Brandon signed up for a job training program through the City of Austin and Goodwill to help kids, including kids with special needs, obtain job training and get paid for a part time job for 5 weeks in the summer.  Brandon is so excited because he knows that he can buy a bunch of DVD's earning $7.25 an hour, 20 hours a week, for five weeks. 

So this morning we went to Brandon's job training/job interview day with a large group of other kids also wanting job experience and training.  Goodwill received a grant to help kids receive job training and they have partnered with many major employers in the Austin area.  It is really a great program and a great opportuinity for Brandon. 

Brandon and I had to separate when we got there and you could tell he was very nervous.  Ms Rector, Brandon's teacher came and helped Brandon which was great.  It put Brandon at ease, but also helped people understand him.  Brandon's speech sometimes can be difficult to understand.  I left Brandon there for 7 hours.  I told Brandon this evening that he was very brave to stay all day, train, and be willing to try.  He is proud of himself.

It would be easy for me to have Brandon stay at home with me for the rest of his life.  But many years ago I met someone at work who had a sister with down's syndrome.  His parents had her at home with them until they died.  He said she was really unhappy, not prepared for life and was in shock when they died.  He worked with his sister.  Helped her find a job and helped her transition to living independently.  He said he had never seen her so happy.  To this day she has a very full life.  He said to please remember this as Brandon got older because really his sister would have been happier transitioning when she was younger. 
I have had other friends who are older, became sick, did not transition their kids and their kids were not prepared when they had to transition.  It is tough for everyone. 

I really had to think about this when we started preparing for development of Brandon's good life and his PATH to the future.  Although it is really hard for me to let Brandon out in the world where not everyone is as sweet as Brandon, as nice as Brandon and as special (to me) as Brandon, it really is the only way to Brandon's good life.  When we developed Brandon's PATH to his good life, Brandon said that he wants to live independently, marry someone named Yoko, and have a child.  In order to meet his dream he will need to become independent just like Patrick became indepentent when he joined the Air Force.  Brandon really looks up to his brother Patrick and wants to live like he does.

So in June Brandon will have his first job.  I remember my first job at Burger Chef.  It was pretty rough.  I think they are still talking about the time I had the biggest over-riing in the history of Burger Chef and the time I flooded the entire place when it was my night to close down and clean up.  The water turnoff was in the locked area of the place.  The water spout broke and there was no way to turn off the water.  Therefore, the whole place flooded.  They are probably still talking about that as well. 

I hope Brandon's experience is much better.  This whole experience may be harder on me than him, but I am hanging in there knowing that one day Brandon will have his good life. 

More updates later.
Leah

Brandon's Good Life Party Overview

Brandon held his "Good Life" party this weekend to plan for his future.  Everyone really enjoyed the party and the process we used to develop Brandon "Good Life Path".  Jennifer and Trish did a great job of facilitating and turning Brandon's dream of being the King of Rock n Roll and his love of the Beatles into a plan for the future.  It was a lively, large group helping and coming up with great ideas to explore.  We already have a possible Rock n Roll camp for Brandon to attend this summer, added e-mail addresses and phone numbers to Brandon's communcation device to call and e-mail friends and added skype for Brandon to communicate.  Brandon independently cleaned up his room and took his dirty clothes to the laundry basket this weekend and Bill is ready for drum lessons for Brandon.  A great start already. 

I have written out Brandon's Good Life Path and sent to everyone at the meeting and who was interested in participating.  Next steps is to form a smaller group to work through more of the Path and support Brandon for longer term. 

I am also in the process of researching topics concerning guardianship, SSI and child support orders and looking for the right attorney to help with this for a reasonable fee.  I am really behind on the guardianship topic and need to do a great deal of research. 

Thanks so much for everyone's support and I will keep you posted as we work through Brandon's Good Life PATH. 
Leah

Brandon's Good Life Party

The gang at Brandon's Good Life Party

Leah (mom), Jim, Cathy and Steve

Jennifer and Trish (facilitators)

Working with Brandon's love of the Beatles and his desire to be the King of Rock n Roll

Brandon's communication device

Brandon's Good Life

This weekend 26 of my and Brandon's closests friends and family will gather at his grandmother's house and brainstorm on developing a plan for Brandon's path to a good life from now and in the future. Brandon and I have discussed his plans for the future many times, but now we are close to reality because within the next year he will turn 18. For several years I have been very aware that I am the sole person knowing almost everything about Brandon. I know his likes and dislikes, his great sense of humor, his sweetness, his love of music especially the Beatles, his medical conditions, prior surgeries, dental issues, his communication challenges, funding programs that support and have supported Brandon, the many aides and nurses who have supported Brandon is the past and present and his individual needs for daily living, what he is doing in school, what classes he is taking and why, what supports are needed in school, what are his thoughts for the future, and much more. I have to say with all our supports and hard work Brandon is a great kid and has gone so far in 17 years.

I have concerns about being the only person with the knowledge of what it takes for Brandon to be the best he can be and to be happy. So during this transition to an adult, I have decided it is time to develop a plan for Brandon’s future and to have more people involved in those decisions and aware of Brandon’s plans for himself. I have been reading a book titled “A Good Life” by Al Etmanski. It is written by parents of kids/adults with special needs from Canada and it takes the years of experience from families who have developed plans for the future with their kids with special needs and those who formed a smaller support group to support those dreams throughout that child’s life.

The book identifies key areas for families to consider when developing a plan for the future. This is true for all parents.
· Having loving and caring relationships and friendships

· Having a place of one’s own or a home

· Making a contribution or having meaning in one’s life

· Directing your own life or having choices

· Having basic financial security.

These are all things to consider when developing a plan for the future which allows for a good life.

The ARC of Texas has a very similar process where they call the plan for the future a PATH or Planning Alternative Tomorrows with Hope. Once a PATH is developed a smaller group of individuals form together and help make that good life happen. This can lead to this group forming a non-profit microboard to support the PATH.

I have been working with the ARC of Texas to help facilitate a meeting to help develop Brandon’s Path or a plan for Brandon’s good life for now and the future. The goal is to brainstorm all the possiblities with a large group of friends and family and form a smaller group, meet on a regular basis and take those great ideaz and refine them into a working plan. The plan is fluid as Brandon grows and matures. But the idea is for the whole group to be involved and knowing Brandon's plan for the future. It is a great relief for family to have help and hopefully a joy for the people who volunteer their time. Everyone coming to the meeting all know Brandon, but all know him differently and each are key to brainstorming all the possibilities. We are honored to have such great friends and family help us through this process.

On my list for learning in the next few months include guardianship, Medicare and SSI application and implementation. I also need to update Brandon's trust. Lots to do and I know this all will pass by quickly.

What I learn, I will try to post for any parents starting this process. I really feel like I am starting late, but I also know that anytime you start to build the future with your child is a good time to start. Looking forward to seeing everyone on Saturday.
More later
Leah