Saturday, December 31, 2016

2016 a Reflection on the Year and 2017 More to Come.

I realized today that it has been over 1 year since I have posted on the blog.  There have been so many changes and in some ways still the same.  So here is our 2016 year of Brandon and Leah and  an update on our quest for the "good life" for Brandon.  Sorry if I have been too darn busy this year to get with friends, work on more projects and get out for some entertainment.  I plan on 2017 being a better year, a more well rounded year for us all at the Rummel compound. 

A little reflection on the last year made me realize that Brandon's plan for a "Good Life" is always a work in progress with changes every week.  I wasn't certain what life would be like after Brandon left school.  I can honestly say life is about Brandon's choices now - his guitar lessons, singing in "We are the Chorus", participating in Exceptional Saturdays, hanging with Rush on "Off the Beatle Path" Radio show each Monday, RedArena, hanging with his friends, staying home with his roommate and calling his mom whenever he wants on FaceTime.  It is an exciting time and fun for me to see Brandon grow so much. But there are also 5 people helping Brandon, a roommate with a full time job, sicknesses, medications and DME supplies, reporting to SSI, meeting with case managers, scheduling, changes in the weekly events, bank accounts, keeping up with all things Brandon.  This part really requires me to be on my toes at all times.  As long as I am 100%, in the same city, and paying attention to all things Brandon it works fine.  So this next year (2017), trying to make this smoother  is something Brandon's personal network "The Cavern Club" will be working on. 

Brandon's arrangement to live in the house next door with a roommate is really working very well.  Brandon likes this arrangement much more than having a caretaker.  We will continue with this arrangement for the future.  Brandon's jobs are going great. He still works at UT and a DME company each afternoon except Fridays.   Here are the more significant events of 2016. 
Brandon and his roommate Nathan

The Fire - On Nov.30th, 2015, Brandon had been sick.  I was very pre-occupied with working and trying to care for him.  I knew he had become worse and we needed to see the doctor.  I finished up my last conference call, made an appointment for the urgent care center, grabbed Brandon and headed over to urgent care clinic.  Normally in the early evening (6:00), I would check on the chickens and the goats and lock them in the barn for the night.  But I didn't have time this evening.  I was almost to the urgent care clinic about 30 minutes from the house when Tony called me.  He sounded panicked.  He had just pulled up to the house.  As he was getting out of the car he saw an orange glow.  He turned towards it and realized the barn was on fire.  He ran to check on the animals and heard them down the hill. He called 911 and then he called me.  Of course he wanted me to come home.  So a little secret here - all you special need moms will understand.  I thought - the fire trucks are on their way, Tony is there, it will take me 30 minutes to get home and there is nothing I can do about the fire at this point.  But I knew Brandon was very ill.  I went ahead to the clinic.  Luckily, our physician got us in and out with a diagnosis of pneumonia.  I drove pretty fast back to the house.  The street was blocked off and there were a ton of fire trucks, a pool for water and more firemen than I have ever seen.  It turns out that there was a volunteer fire department training around the corner with 40 volunteer fire fighters who just came to our house instead.  The electricity was out and there had been some movement of the fire in the trees very close to the house.  The barn was the size of a small house.  In the barn was a workshop, storage, a large chicken coop, an area I built for the goats, a green house and the starting of a little guest space.  Everything was gone.  The smell from the fire was almost unbearable and toxic.  I am telling you this because this has been taking a great deal of my free time for the last year. Receipts from tools, upgrade to the structure, filing claims for replacement; and clean up and replacement all has been long and slow and we are not really done yet. Insurance covered about 1/3 of the costs of the structure. All of the animals survived.  I even found a chicken buried under the wet dirt.  AND the fire fighters saved the house.  If they had been 10 minutes longer it would have been much worse. But the area now is clear and replaced.  Still more work for be done, but this property always has more work that needs to be done and really is why I like it so much. 

Medication and Recovery- At the beginning of 2016, Brandon started having seizure related health issues.  This started after the pharmacy informed us that Brandon's generic medication for his seizures was on "back order". We started using a different manufacturer and within a few days Brandon started having symptoms ranging from his eyelid "flopping", to an aura, then a full blown seizure.  We changed to a new generic after some study on his generic options.  There were over 25 different manufacturers for this drug.  Really there is no way to determine how closely one drug is compared to the name brand.  On the third generic drug, Brandon started having more subtle reactions such as not wanting to leave the house, objecting to going with aides out in the community, having what I would call panic attacks, telling others he doesn't feel good and doesn't want to work.  If you look up the side effects for this drug these can be some of the more complex side effects.  It took a while to put the symptoms with the drug.  Brandon is also still recovering from his trauma he incurred in 2015, so we worked closely with a psychologist, a nurse, a pharmacist and his neurologist.  After another try on a 4th generic and having conversations with the original generic company who said the drug would no longer be manufactured, we all decided that Brandon needed to be on the name brand medication for now. This would rule out that his issues are seizure related or not seizure related. Brandon takes a liquid form of the medication and the doses and ingredients differ from the pill form.   Within 1 week of changing back to the name brand, Brandon was back to his funny, goofy, music loving self.  I think he will always have some ups and downs on this drug, especially if he doesn't get enough sleep or is sick, but this drug (Keppra) allows Brandon to be almost seizure free and maintain his own personality without the severe sleepy side effects.  I have posted for many, many, months on my fight for coverage of this drug with the insurance companies/Medicare Part D/Medicaid.  It is finally resolved after hour and hours of work at least for one year. 

Socialization - Last year while working with Brandon's network we decided to try setting up Friday get togethers with other young adults with special needs, some aides and volunteers with the goal of socialization within the community.  I started a group called the Dripping Springs Friendship Club and set up a Facebook page for people to join.  We now have 75 members and are very active with outings including bowling, yoga, art, movies, music, swimming, a farm, the zoo, RedArena, a recording studio, evening parties, making arts and crafts for a sale.  The group is all volunteer and our events are voted on by the group.  I help post the logistics of each Friday along with Brandon's job coach Mary.  For Brandon who really needed more socialization, he no longer objects to going and has started interacting with the group.  For the group, I have seen such growth and confidence.  I am so proud of each of them for getting out in the community and developing friends and confidence in their own value.  For me, when I am lucky enough to hang out with the group, it is so refreshing to be part of such an honest, innocent, sincere group of young adults.  I leave with a whole new recharge on life.  Anyone who would like to volunteer or join please feel free to contact me.   

Brandon and the Beatles - This was another big year for Brandon and his love of the Beatles.  Brandon has been going to the KOOP Radio show Off the Beatles Path for at least the last 4 years, side by side with Rush Evans (the most amazing guy with a heart of gold) and Mary (Brandon's job coach and music lover).  This year Rush has been talking to Brandon about using his IPAD communication device to speak on the show.  At first we were working with Brandon and his speech therapist for a few Beatles facts he could present on the show.  Then Rush and Brandon expanded it to a few more Beatles facts, then Rush encouraged Brandon to guest host the whole show.  For Brandon, guest hosting the whole show was a little overwhelming.  Rush wanted Brandon to explain his love of the Beatles and what the Beatles music means to him.  Working with his speech therapist for around 6 months he finally had enough programmed on his device to guest host. We worked with Brandon doing the show live, but when pressing the keys it is really too easy to miss a key or accidentally repeat a key.  We decided to lesson the stress and downloaded Brandon's verbal portion of the show.  Thanks to Mike Morgan at "The Zone" for helping us download off Brandon's device.  Rush found the right versions of the songs Brandon wanted to present and added them to Brandon's information.  On the day of the show, Rush and Brandon picked out music live during Brandon's speaking part.  I think the segment came out great and I was lucky enough to sit in the studio while the show was broadcasting.  Here is a link to KOOPs article KOOP Radio Article on Brandon .  Here is the link on the article from the company that developed the software. Article from Tobyiidynavox on Brandon .  Brandon is now working on a new guest host show to be played in the future.  He would like to interview several key people about what the Beatles music has meant in their lives.  It should be a fun show as well.  Coming in 2017.

Brandon the Advocate -  Over the years I have encouraged Brandon to speak his voice on issues that he cares about.  His first hearing was when he was on the Medically Dependent Children's Program here in Texas.  The state was planning to make changes impacting Brandon.  He went with me to testify. He testified at changes with the Medicaid consumer directed program, at the Capitol on education issues, participated in a Capitol briefing from the Children's Policy Council, educated United Healthcare on how to talk to a person with intellectual disabilities using a communication device, develop a short film on the ADA, and went with the Coalition on Texans with Disabilities during their legislative meetings. Brandon has no option not to advocate because I am so involved in disability issues from many sides.  This year United Healthcare asked Brandon and me to present at a National NACDD conference in Washington. They wanted to hear about quality indicators for persons with intellectual disabilities.  Brandon was asked to present on his person centered plan and his personal network.  I have to say Brandon did better than me because I was a little pre-occupied with him - ha. We programmed his device and he spoke about his person centered plan. He was a little sleepy at the beginning of the panel and told me he was going to sleep until they got to him AND HE DID.  But he pulled it off and did a great job. Here is a link to his presentation. 


Part of being an advocate is selecting and voting for those who represent you.  This year was Brandon's second national election.  He has really looked forward to exercising his right to vote, because some of friends have not been able to exercise their rights due to their disabilities.  I have explained to Brandon he is representing more than himself when he advocates.  So this year Brandon watched every debate both democratic and republican. He watched the general election debates.  He watched how the candidates treated people with disabilities and promoted policies concerning people with disabilities.  He probably knew more facts on each candidate than me. Before the election we sat down and went over the list of choices for all offices.  I asked him to think about what is important to him in a candidate, who supported policies for people with disabilities, who treated people with disabilities with respect and understanding. I am proud of him.  He made his choices.  The night of the election we had a few people over to his house to watch the election results.  Brandon was very excited with anticipation.  Around 9:00pm, I could tell which direction the election was headed and knew this was going to be a long night.  I told Brandon he really should go to bed and we would have the results in the morning.  We all left Brandon and his roommate.  At 2:00 am my FaceTime rang.  I immediately answered because it was Brandon.  He said "Momma I have some bad news".  I said Brandon did your candidate lose.  He said yes.  I said I would be over in the morning to talk to him about it.  The next morning I went to his house.  He said to me - "Momma everything we be alright".  I said to him.  Brandon we are just going to have to work harder to advocate for people with disabilities.  He said yes we will.  Wow is all I can say. Really proud of him.

Momma's health - I don't post about this too much.  But as you heard above, things go well as long as I am 100%.  In October I caught an awful bug, which turned into pneumonia.  Two things that worried me is that Brandon might catch my bug and his version of the bug could have been very serious.  And if I even had the energy to take care of him on the weekends.  I kept thinking this bug was going to go away in a couple of weeks, but it ended up 2 1/2 months of a pretty significant illness.  Thanks to all of Brandon's aides, Tony and my brother for helping me during the 2 1/2 months.  It has really opened my eyes to paying attention to my health - a goal for 2017.  Perhaps I should start with a check up for the first time in 10 years.   

So on to 2017.  What is clear Brandon and I will be working harder this year advocating for people with disabilities. I am proud of Brandon and it is so great to see his growth.  I really can say he is living a Good Life and as Brandon will say - there is still more. 

So I heard this from a friend today struggling with cancer and we would like to share with you.
  • Realize your every BLESSING
  • Go a little slower
  • Kiss a little longer
  • Hug a little tighter,
  • PRAISE a little harder,
  • BE safe, be careful and know that GOD LOVES YOU and SO DO Brandon and I. 
On to 2017

Thursday, November 5, 2015

A Parent's Dream

Last year as I was listening to a very long legislative hearing for work. I heard a parent of a young man with disabilities testify to the legislature that he worked hard for his son to have a good life, living in a house with other young men and he cried as he said that he was never so happy when his son told him he was ready to go home on a weekend visit.  For parents of adults with disabilities our dream is for our children to live in a place they can call their home and that place is not their parents home.  His fear was that what he had worked with his son for so long to live in a place where he calls home may change. That parent wanted to make sure the place where his son calls home would remain the same after changes in Medicaid.  I was thinking as he was testifying, that his dream for his son is like my dream for Brandon.  I want Brandon to have a home he can live in for the rest of his life and feel like his house is his home. For the last few years I have referred to my house as "the house in Dripping Springs" and his condo as "his home", so he can start thinking about his own home and what he wants from his own home.  But Brandon still wanted to come "home" to Dripping Springs even with my not so subtle hints.

About 2 months ago Brandon started living with his new roommate.  His name is Nathan.  Nathan attended A&M and has learned to work with people with disabilities.  His dream is to one day run a group home.  His personality is as sweet as Brandon, he is so eager to help and in 2 months he really has become part of the family.  The first day Brandon was going to stay with Nathan all night, he called me about every 30 minutes using Facetime asking me to come get him.  I came and had dinner with the guys and Nathan in his sweet manner starting talking to Brandon and asking him about the Beatles.  The next day only a few calls and the third day no calls.  This week (2 months later) I went over for dinner.  I needed to go to the grocery store.  We made a list of items needed at the guys house, and I asked Brandon if he wanted to come.  He said no.  I asked him if he wanted me to check on him on the video camera when he was about to go to sleep and he said no.  This was while Brandon and Nathan were sitting around their dinner table eating Pizza they had fixed.  They both looked very happy and comfortable with one another.  I still have my dream, like the father who testified above.  But, for now a little rejection feels pretty good.

Nathan and Brandon
I also have been thinking about what all young adults want when they move out from their parents, start jobs, begin to build their own lives.  What really makes a full life is having friends.  But this can be a major challenge for adults with disabilities.  Sometimes they become isolated and frustrated as a result.  So I decided to start the Dripping Springs Friendship Club.  I started a Facebook Page and invited anyone in the community to join.  The group is just starting to catch on.  We have had some great events, the highlight was Art day.  The group gets together each Friday for some activity, lunch and friendship.  So far it has been great.  Many more ideas to build on, but for now we are just getting the group out to the community, setting events each week and communicating to those participating. I have been so lucky to have people volunteer time, their services and space.  I am not sure where this will go from here but having friends is worth the effort.  More to come.
 Dripping Springs Friendship Club out for lunch
Art Day
All for now and all is good.  

Sunday, September 6, 2015

Beatles Beatles Beatles LIVERPOOL

After a few days in London we headed to Liverpool.  Brandon had recovered from jetlag and the medication adjustment and feeling really good.  Tony Maddalone did a great job getting us from the hotel to the train, then from the train to the hotel in Liverpool.  We stayed at the Hard Nights Hotel. Nice hotel right around the corner from the Cavern Club.  The hotel has Beatles music playing all the time which Brandon loved and each room has Beatles themes.  The drinks were even named after Beatles songs.  Brandon loved the hotel.  I forgot to mention that Brandon has developed a liking to "bangers" each morning in both hotels.  Once again I want to say that London and Liverpool train stations really made the trip so much easier.  They both have accessible stations and will help people get on the train.
Brandon, Mary and me being shuttled to the train with out bags.

We started our evening after arriving in Liverpool walking around the Cavern Club area with our tour guide Jackie Spencer.  

On to the Philharmonic Pub where the Beatles often hung out by the Art school.
Art in front of the Art school you will see Beatles names on some of the pieces. 
Houdlings Pub another frequent of the Beatles and Art students.  
The Dissenters etched in the bar mirror in the pub listing John Lennon and Stu Sutcliffe as one of the 4.  Lots of Beatles history here and where we met with Freda Kelly. 
 Brandon and Freda (Beatles Fan Club).  If you havent seen her documentary you should it is really great.  Good Ol Freda
Freda Kelly with the gang (Brandon, me, Kurt, Mary and Karen).Great evening talking to her about her experiences with the Beatles.  A highlight of the trip.  

The Jacaranda Club was owned by Allan Williams, who became the Beatles' first manager. The Beatles often played, rehearsed and hung out at the Jac, where Stu Sutcliffe's murals can still be seen on the basement walls. The Blue Angel was another club run by Allan Williams and was the scene of the Beatles' 1960 audition for impresario Larry Parnes which landed them their first tour outside of Liverpool, backing singer Johnny Gentle on a tour of Scotland. 
Back to the Cavern Club where we met the "Fab Forever" and they took a picture with Brandon.  
Back out with Jackie the next morning and started where John Lennon was born. 

Then where Paul (and Jackie) were born. 

Off to the Casbah Club where the Beatles had their start and played with the owner's son Pete Best.  

 These are in the garden area.

Our guide Roag Best (Pete's brother). Brandon was soooo excited in this part of the tour. A tour highlight.  Owned by Mona Best in 1959 in the cellar of the family home. The Casbah, as it became widely known, was planned as a members-only club for Best's sons Pete, his younger brother, Rory, and their friends. Mona came up with the idea of the club after watching a TV report about The 2i's Coffee Bar in London's Soho where several singers had been discovered. She decided to open the club, which was located in her cellar, on 29 August 1959, for her sons, their friends and young people to meet and listen to the popular music of the day.
The QuarrymenJohn Lennon, Paul McCartney, George Harrison, and Ken Brown—went to the club to arrange their first booking, to which Mona agreed, but said she needed to finish painting the club first. All four took up brushes and helped Mona to finish painting the walls with spiders, dragons, rainbows and stars. The group often played at The Casbah.
Another highlight of our time in Liverpool.
Penny Lane 
At the Hall where the Beatles first met - we were able to meet some locals, buy some books and pictures and saw the Brian Epstein dedication.  
On to Strawberry Fields
Brandon was particularly moved by Strawberry Fields where there once was a children's orphanage.  The new plans are for this location is to be a place where young adults with learning challenges have work opportunities.  Something Brandon is very interested in.  So it was really great to visit and learn.  Brandon wants to write Ringo and Paul and ask for support. 

"The Salvation Army have announced plans for a new training centre and cafe at Strawberry Field, the former children’s home run by The Salvation Army since 1936 and which closed in 2005, and the focus of the now legendary Beatles song, ‘Strawberry Fields Forever’.  The Church and Charity seeks to develop a training centre for work skills at the site, including opportunities for young people with learning disabilities to develop valuable skills which can enable them to gain entry to the workforce.
Alongside the training programme, Strawberry Field will also for the first time play host to visitors – with areas of the grounds and a café open to the public. Alongside the café will be a heritage exhibit which will explore the history of both The Salvation Army’s provision of child services and Strawberry Field.

There were many other sites we saw on this day such as homes where John, Paul, George and Ringo lived.  That evening we started the Beatles Festival (Beatles week) listening to Donovan.  
We started the next day with a tour of the Beatles Story.  These next pictures are from this exhibit. 

On to Alma de Cuba Beatles Festival (lunch and music).
Where we met
Yea they look real but they are not.
But Mark Hudson is at the Beatles Fest
May Pang
Peter Asher
Around the cavern club 
We also went to the homes of John Lennon and Paul McCartney now in the National Trust then back to the festival for the Quarrymen and a tribute to John Lennon.  
On the ride back to the train station we met another relative from the Sliver Beatles.  They are everywhere
Brandon feeling good after a great time in Liverpool.  
We can't thank Tony Maddalone enough for such a great trip.  You can reach him at the Beatles Pilgrimage  Tour  Brandon loved loved loved Tony.  He was so sweet with him and talked the Beatles talk.  
Loaded up and ready to go back to Austin.  What a fabulous 12 days.  Thanks to everyone who supported Brandon in his dream.