Beatles Beatles Beatles LONDON !!!!!!

Yesterday we arrived back in Austin, Tx from a 12 day vacation to London and Liverpool. It was jam packed with everything Beatles, London and Liverpool.  I tried to update on this page but found the internet connection was to difficult to maneuver.  So this is the summary of the trip and this post focuses on London.  I will post another post on Liverpool.  I will post more detail when we gather all the photos.

I would like to point out a couple of really significant points between the US and Britain.  We started off at the airport when I had to check in liquids for Brandon to travel on the plane.  I anticipated we were going to have issues at security and I obtained a letter from Brandon's doctor outlining why he needed to travel with liquids (medications, nebulizer tubes and 6 cans of Boost).  All the medications had their prescription on them.  When I told security about the liquids they pulled me aside, left Brandon, scanned the liquids and rudely told me that if any of the liquids did not meet the scan they would have to do a body search on me.  This didn't really make sense.  TSA could not have been more rude.  I stood waiting for the scan which took awhile.  TSA can back and the bottles passed but they have moved everything in the bag with all the medicines so I had to repack around everyone trying to unload.  I show this in comparison to England where they had a special line for persons with disabilities to accommodate through the check in process and everything was handled without use of the scans.  It was so easy and such a sigh of relief.  In fact, we found everyone in London and Liverpool so helpful, with immediate accommodations for Brandon to access everything we wanted to see.  The only exception to this was the "tube" where we Brandon did have to walk and where we took the empty wheelchair up and down the escalators.   People helped us with directions, how to access the "lifts (elevators), food options, it was really nice.

We started off at the Austin airport - can you tell the trip was all about the Beatles.  Along for the journey was me, Brandon, Kurt, Mary and Karen.  I could not have done this trip without them and it took everyone to make the trip work.  We took individual time for everyone and each person filled in when someone else wanted some alone time or individual touring time.

I would like to thank Mary for her total support of Brandon throughout the trip, helping when he wasn't feeling well, and her calmness. Brandon loves Mary and it was a natural fit for Mary to be on this trip.  I would like to thank Kurt for the heavy load, pushing Brandon around and making it fun for him, his inventive ways to get Brandon to all the things he wanted to see and having a guy around for that guy bonding.  Brandon and Kurt were really close on the trip.  I want to thank Karen for her patience with Brandon, "calling the airline" over and over when he wanted to come home, helping Brandon work through his first few days where he didn't feel great and supporting his needs throughout the entire trip.  Brandon trusts Karen and this was really needed on this trip. We could not have done this trip without any of you.  

And then there were the pods.  We got a little spoiled.  Thank you British Airways.  

We arrived

Off to the British Library to see the original manuscripts to some of the Beatles songs. 

Brandon started having a reaction to his seizure medication increase and we decided that he needed a day to recover.  He really felt miserable (understandably) and wanted to go home to see his doctor.  I adjusted the medication and after a day of rest he was better to go out for all things Beatles but a little tired.  Lots of time to watch his Beatles movies quietly.  

During Brandon's down day Kurt, Mary and Karen went on a mini London tour and saw the Palace.  In the evening we took shifts and I did a quick bus tour of London tour with Kurt and Karen.  

The next morning we were off with our guide for the day Bob (see below) who knew all things Beatles and music in London.  Along with us was Tony Maddalone who arranged for the entire 12 days.  First stop a studio where Paul McCartney recorded. 

Tony Maddalone and Brandon.  Brandon loved loved loved him.  Brandon asked him 1000 Beatles questions.  

Bob the tour guide for London

On to one of the sites where the Beatles recorded a Hard Days Night and a theater where they often played.

Off to the Chiswick House and Gardens where the Beatles filmed. 

 Doing the Ringo face where Ringo played the drums in 

Where the Beatles stood in one of their film Nowhere Man.

HELP

 Olympic Studios - where many famous musicians recorded

Site where Marc Bolan died.  

 Turks Head for lunch - another movie site

George Harrison's home - Friar Park

Abbey Road Crossing

Paul McCartneys house

 At the train station where Beatles filmed Hard Days Night. 

Building Brandon's Home

A few weeks ago I spoke at the Texas Parent to Parent Conference concerning how I set up housing and services for Brandon.  I decided I needed to post of this because there was a great deal of interest and plenty of great questions.  So this is for all parents trying to make decisions. 

After Brandon finished high school at age 18, we made the decision to move closer to his school for him to participate in the “Adult Transition Program” which works with him to age 21.  I looked at several living options, including rentals in the area (apartments and houses), and buying property in the area.  Because rental was so expensive, I opted to buy a condo 5 minutes from the school with a 30 year loan period.  I knew once we left the school in four years I would be able to recoup most of the money spent on the expenses to live in the condo due to increases in housing prices in Austin.  I put the house in my name and Brandon paid his fair share as required by SSI (see my SSI post).

For Brandon I needed a few key features to the property such as:

• As few attached walls as possible.  Brandon loves music and can sometimes have the TV and the computer blasting with music.  I wanted to make sure we didn’t have a noise issue.
• Brandon likes baths.  So I needed to have a bath-tub available for him. 
• I wanted an accessible unit if possible but would consider others. 
• I wanted to have parking close to the unit. 

The condo we purchased had all the above except it was not accessible, but close to meeting Brandon’s accessibility needs.    

Brandon and I moved into the condo for the first year.  I shortly realized that Brandon (now 19), did not need me for most of time during the week, but he did on the weekends.  I decided to take baby steps and started using respite hours through Brandon’s Medicaid CLASS program at least one weekend a month, so Brandon would get used to having someone with him for 24 hours several days at a time.  The first few attempts were difficult for both Brandon and I because we had both been with each other for every weekend for 19 years.  It was particularly hard for me because I had no idea what to do with my time.  This didn’t last long, and I was able to fill the weekends very quickly.  Brandon began to like respite weekends because he was able to choose what he wanted to do and they were always fun. 

After 1 year in school, Brandon, his personal network and I decided to look for the perfect person to live with Brandon in the condo.  I still had my house in Dripping Springs and Brandon’s condo in Austin.  We spread a wide net to look for the right person.  I put ads in Craigslist, Care.com and everyone on Brandon’s network sent out the job description.   We had 45 applicants.  However, one of the network members found a person working part time at the School for the Blind and Visually impaired.  I call this person Brandon’s “companion”.  I found that when I named this a co-parent I had less interest.  I hired this person (a guy) and Brandon and his companion moved into the condo.  In the beginning I was at the condo many times each week.  I worked to train the companion and helped assure Brandon everything was fine.  Brandon loves music and so did his companion, so they did a lot of playing and listening to music.  Transitions between the house and the condo were hard for the first 6 months, but after 6 months Brandon seemed at ease.   

Our arrangement:

•  Brandon came home each weekend and stayed at his condo during the week while in school.  On occasion the companion would do a respite weekend. 
• In the summer Brandon would stay at my house for 1 month, but otherwise live at the condo (except weekends). 
• The companion was paid for “awake hours” Sunday evening from 7:00 to 10:00 pm.  Monday, Tuesday, Wednesday, Thursday and Friday mornings from 6:00 to 8:00 am and the evenings from 7:00 to 10:00 pm (except Friday evenings).  A total of 25 hours paid through Brandon’s CLASS Program as habilitation hours. 
• In the evening hours the companion stayed at the condo with no traditional pay except free rent, electricity, gas, trash, cable/internet and home phone.
• I provided a car for Brandon transportation. 
• Brandon’s SSI payment paid the mortgage payment.
• Brandon has a credit card for use of other items such as food, but I never keep a large amount on the card.  The card does get lost. 
• Brandon has a reminder system for basic items such as time to get up, brush my teeth, get clothes ready for next day and take a bath.  We started using this simple reminder system you can buy on amazon.  The device is called MedCenter Your Minder Interactive 6 Personalized 10 sec Reminder Clock with AC Adapter.  Within two weeks Brandon was on a schedule and doing all the reminder items automatically.  I couldn’t believe it.  Within 6 months he was doing them before the alarm would go off.
• Brandon was participating in a program through the University of Texas and was able to find some great apps to assist with tasks.  The one I like the best is Autismate.  You can take video of steps for a task such as doing laundry or shaving. Brandon would work through each step programmed in his IPAD.  Repetition is good.   He has graduated from some tasks. 

This worked great for 2 school years.  Brandon became so much more independent learning to make some of his own food, doing the laundry, being independent in all things in the bathroom, and cleaning up his room.  The last school year we had changes in aides and eventually issues resulting in changes to the plan.  I took the opportunity to move Brandon and his companion to my mother’s house next door to mine.  I had been modifying the house to meet Brandon’s needs.   I wanted to have better oversight of Brandon’s care.  

Some features of the new house.

• The new house has video surveillance in all rooms downstairs but not in the companion room.
• The video surveillance has two way communications. I can talk to Brandon and he can talk to me.  We can do this through the IPAD.  We used an app from Lowes called ismartsee-A. 
• Brandon has an app he can use to call me or my brother.
• He has access to FaceTime which he uses very well.
• The house has digital entrance.
• The bathroom has a drain. Brandon sometimes gets a little carried away with the water in the bathroom and has flooded the floors.
• Brandon has his own large bathroom and the bathroom can convert for wheelchair use.  The cabinet can be converted for wheelchair use.
•  The companion area has privacy and a place to get away for some alone time. 
• I designed the house so Brandon could have another friend live with him if we were to find that perfect match.
• We have dry eraser boards in the house letting Brandon know the schedule for the week and the month. 
• We are trying to have jobs close to his house.
• We will be looking for a expanded reminder system.  When I find the right one I will update here. 

Lesson’s learned -

• Brandon’s new house will be his house to come and go 7 days a week just like any roommate arrangement.
• Having closer proximity to Brandon’s house works better.
• Male companions are preferred, but will consider a female.
• Use of my car is not preferable.  Attendants having their own car works better. 
• More people coming in and out of the house are also preferable. 
• Continue to work on independence with the goal to get Brandon as independent as possible in his own home. 
• Most important - I need to listen to Brandon.  Brandon is very smart on who is best to live with him.    
• For all parents looking at this, start working on independence as soon as you can.  For Brandon it is un-doing his dependence on everyone helping him his entire life.  Looking back now, I wished I had worked with him to be more independent in everyday tasks. 

 At the end of the school year and the end of Brandon’s Adult Transition Program Brandon’s companion moved out.  Brandon is currently living in my home in the evenings, but comes and goes from his own home next door.  Brandon and I have decided to spend the summer working on what the new living arrangement will look like.  We both are considering a roommate type arrangement.  It will require Brandon to become more independent.  We have started to document all tasks where Brandon needs assistance and starting to figure out solutions to helping him become more independent.  Most importantly, I want Brandon to feel like the house is his home.  I think that needs to look like the home that most young men build for themselves after they leave their parents. This includes roommates paying for some of the costs of the house.   That is our goal and we are working on finding those perfect matches.  

A Week to Celebrate

Let's Celebrate.  Brandon has worked so hard for 22 years.  Right after birth Brandon received services from Easter Seals.  He worked so hard trying to learn how to swallow, sit up, move his arms, hands and legs and finally taking those few first few steps.  He was so determined.  He then started school at 3 and worked on reading, math, spelling, all the things kids learn at an early age.  Each success was celebrated even if they took years.  Brandon began spelling words, telling time, starting to eat food through his mouth and many other skills that so many people take for granted.  All had to be learned in Brandon own time.  I have been so amazed over the years how hard Brandon works and his success from all the hard work.  We went through grade school, middle school, high school. There were 100's of people who have impacted his life through their efforts to help Brandon succeed.  I AM SO PROUD OF MY SON.

Brandon has two more days of school and then he will start his life without school supports next week. We both have senioritis and we both are sad and happy.  For Brandon he is going to miss the people at school, the instant socialization with many peers and all the great support he has received through the program.  I really dont know how they do it.  Brandon's Adult Transition Program has 45 young adults going to jobs, going to classes off campus, doing social activities, with support, without support, you name it.  It is all individual.  I don't know how they keep up and I am amazed at what a great staff the school has working with these young adults.  So he will miss this.  But he also is ready to see what life will be after school just like many of his high school friends.  And he is counting the days he will be done.

I will miss the great support, the routine of the day, having other young adults around everyday and everything Brandon has learned through the program.  But I am really ready to let Brandon live his own life without the structure of school, the paperwork, the rules that sometimes dont bend when needed and those pesky ARD meetings.  These are planning meetings to develop Brandon's educational plan for the year.  I may have senoritis worse than Brandon.

Last week, the parents, the graduates and the school decided to celebrate with a graduation lunch. Brandon has already walked across the stage and received his acknowledgment on completion of high school.  This is about completion of all the hard work of 22 years to prepare Brandon in the best way possible to be a success.  I cant thank all the people enough who have worked with him over the years.  You have made a difference.

The other great news - The University of Texas liked Brandon's work so much through this program and he has become such a part of their team, they are hiring and paying Brandon to continue his work he has learned.  He begins in June.  SUCCESS.

This weekend Brandon's network will start work on what the new schedule will look like, including his new job.  Great news all around.
 Here are a few pictures.

Brandon's graduation trophy (he deserved it)

 One of Brandon's first lead teacher's. A big influence in his life

 Brandon's current job coach

 Brandon's occupational therapist and big Beatles supporter

 One of Brandon's job coaches

 Brandon bus driver for the entire time he has been at ATS.

Love, Loss and Mother's Day

A few weeks ago, I attended a memorial for a friend's daughter.  I have known this family since Brandon started school in Dripping Springs in Kindergarten.  They live close by. Although our kids have different diagnosis, in some ways they are similar.  Both have been challenged with health issues early in life and have continued health challenges as they grew.  So I bonded with this family. 
Their daughter was two months older than Brandon, was so sweet and a joy to be around everyday she lived.  As our kids grew, our families would rely on each other for friendship, social gathers, questions on symptoms, doctors, medical equipment, school, social services and support. They have been present at every hospital stay I have had with Brandon since I have know them.  They feel my pain and I feel theirs.  That is why the memorial was so significant for both me and Brandon.

It also brings love and loss so close to home.  Brandon has been a fighter over the years and I am thankful for everyday he is here.  When my friends lose their children I cant help but grieve as well.  So I am trying to have a great mothers day this year.  I think a great mothers day for me will include a little rest, a lot of hugs and a little mommie time.

This mom's day we have a lot of changes now and in the near future.  It has been two years since I lost my mom.  I really miss her around this time of the year.  Brandon has 9 more days of school left.  He will leave school and will be in the adult world by the end of May.  Brandon has moved back in with me until he graduates.    Brandon's longtime companion is leaving at the end of May and will be working on new exciting other projects.  He has helped Brandon so much develop independent living skills and prepare him for this adult world.  Brandon will be mainly in Dripping Springs after May with the exception of the Beatles Radio show and his job at UT.  We have a whole new group of aides working with him starting this summer.  I have Brandon's condo on the market.  My oldest brother is leaving in May to go back to Italy after spending 6 months in the US.  Major changes for everyone.

Good news.  We are almost completely booked for the trip to London and Liverpool.  Plane tickets are booked and paid for, festival tickets paid, and tour of the "all things Beatles" is almost finalized.  Brandon is really excited about the upcoming trip. 

I did ask Brandon what he was going to do for Mothers Day.  He said "whatever you want to do I will do".  I can't ask for anything more.  I am one lucky mommy.  Happy mother's day everyone. 

More Later
Leah

Brandon says a big Beatles THANK YOU

At the end of this month Brandon's fundraiser efforts will end.  Brandon's goal was to raise $5,000.00 for this trip to Liverpool and London this summer.  He plans to go to the International Beatles Festival.  I am really humbled and inspired by all the support for his dream.  He have raised over $8,000.00 for this trip.  For him, it will be a trip of a lifetime.  For me, I am thankful I will have support for Brandon on the trip.

I want to thank Meredith Delk for holding the fundraiser, saving the day when it all fell apart and being there for Brandon and me.  I was stressed beyond words and you made it so much easier.  I want to thank Lara Keel, Pati McCandless, Kurt Ruzicka and Nora Belcher for co-hosting, being part of team Brandon and connecting with all our friends.  You guys rock.

I want thank Patrick, Caitlyn, Peggy and Larry for coming to Austin and helping me and Brandon over the weekend.  Could not have done it without you.

I want to thank Tony Airoldi for all of his support and love; and Tony and Lucky 7 for playing for the event.

I want to thank Chris Sowa for being Brandon's music support.  You are so gentle with Brandon and you have made a difference in his life.

I want to thank Bobby Whitlock and Coco Carmel for their support of Brandon and playing at the fundraiser.  It was really a special evening and you were a big part of it.

More important.  Brandon has a big thank you to everyone involved and to everyone who contributed to his fundraiser.  Please click on the link below for a message from Brandon.

BRANDON'S BEATLES THANK YOU TO YOU ALL.

https://www.youtube.com/watch?v=Hzg-QT_Gjx4

We are booking and planning the trip as we speak.  I cant believe we are going to Liverpool!!!!!!!

More later

Time for some reflection and healing, a post for all parents.

Five years ago Brandon and I decided that we needed to plan for the future.  Brandon was ready for those baby steps to take more control of his life and the direction it takes.  I needed to allow Brandon to make decisions, have more of a role choosing those people in his life, provide direction on preferred jobs and choose the place and setting where he wants to live.  Brandon has grown so much in the last 5 years.  I am so proud of him.  Part of this is letting go and hope the benefits outweigh the risks.   This includes advocating his needs and helping those adults around him when things are not right in his life.  

Two weeks ago Brandon spoke up for himself and told me things are not right in his life and there needed to be a change.  The last few weeks have forced me to reflect on the last few months trying to understand Brandon’s health symptoms and appearance of anxiety and possibly depression.  Based on that reflection and our conversation I am beginning to understand that Brandon is very vulnerable, easily manipulated and may have had things happen in his life that result in emotional health challenges.  I am just now learning how to recognize those signs and how to encourage Brandon to talk to me in a manner where he can express those needs and fears without him worrying about the consequences.  This is a lesson no parent wants to learn, but I hope we are both growing from this experience and how to better identify both those feelings and need for help much sooner.  We are working with professionals on this now.  

It breaks my heart for my son, but I must keep continue to move forward to support him, protect him, and still allow him to live his life.  There is always a fine line between empowering your young adult with disabilities to live their life to the fullest, seek out their dreams and then find a way to make those dream happen, while at the same time, remain safe.   Sometimes, not everyone who comes into contact with Brandon has his best interest in mind. 

The good news is that Brandon is has been happy this week, back at work and school and surrounded by an amazing group of supportive teachers, aides, employers, friends and family. We are all here to support Brandon and to assure all the hard work of the last 5 years continues to progress.   We are still on track for our trip to Liverpool and Brandon can’t be more excited.   

We are making changes to our fundraising efforts.  We have cancelled the fundraiser scheduled for April 26th at Scholtz’s, but will still hold a private fundraiser in February.   I want to thank all of my friends, old and new, who kicked it in gear and provided Brandon with the support he and I needed.   Brandon's school and his other aides who jumped in and volunteered additional hours have been a godsend!  Brandon is so happy to be surrounded by people he loves and trusts.  It makes a big difference for him and me too.   

I post this so you understand that this population is so vulnerable, but they also have wants, needs and dreams.  They are also at high risk for abuse, neglect and isolation.  Let’s all do our part to watch a little closer, become a trusted friend and to provide support in a time of need. 

Love you all

Leah

I cant believe I am going to Liverpool

Yesterday, I had to take Brandon to the doctor.  I always take something for Brandon to read of interest to him while we are waiting.  The Beatles International Festival brochure was just posted so I printed and brought it with us.  We went over what will be happening everyday of the festival and decided we will stay and extra day to see the "Quarrymen" and a few of the other acts.  When we came home he said "Mom I cant believe I am going to Liverpool" and I said I am happy for you Brandon.  If you haven't had a chance to understand Brandon's love of the Beatles read my post of Jan. 28th, 2014 on this blog.  I tried to explain the Beatles music and the impact it has on Brandon's life.

To get to Liverpool from Austin, to travel 1 week and the amount of walking on this trip will be a first for Brandon.  In previous trips shorter trips I have always brought someone to help.  The Festival starts early afternoon each day and goes into the morning of the next day.  Brandon will try to see as much as possible.  So Brandon's aides and some volunteers have all agreed to help on this trip.  I think that will make this trip even better to be surrounded by friends and those closest to Brandon. Brandon's aides and friends decided to hold a series of fundraisers to raise money so Brandon can have the help he needs while on the trip.  As a mom, this is part of taking a back seat to my adult son and allowing him to have his own life.  So we have decided to do a few fundraisers to raise the money for the trip.

The first part of the fundraiser is starting a GiveFoward Campaign.  We have set up a link for people who are interested to help Brandon live his dream and go to the International Beatles Festival.  I hope you will consider.  Here is a link.

https://www.giveforward.com/fundraiser/kt37/brandon-s-international-beatles-dream?utm_source=giveforward&utm_medium=email&utm_campaign=donation_notify_oganizer&email=lrummel@austin.rr.com

We have set up two fundraising events.

The first event is a private house party/concert hosted by our friend Meredith Delk.  It will be catered, have three acoustic acts and I am sure we will hear Beatles songs throughout the night. Brandon will use his device to give everyone his own speech about his trip to Liverpool and will sing a few tunes with his aide Chris and maybe a few special guests.  Look for an invite.  I would like to thank Meredith Delk for her hospitality and support. Lara Laneri Keel, Heather Paffe, Nora Cox and Pati McCandless for co-hosting the event.  You guys rock and we could not do this trip without you. Also, special thanks to the musicians and Jake (Brandon's aide) providing the entertainment for the evening.  

The second event is open to the public.  Mark your calendars as this should be a night to remember with some very special bands performing at:

Scholz's Beir Garten
April 26th, 2015
1607 San Jacinto Blvd
Austin TX 78701
Music to start at 2:30 and end around 9:00.  

We will have music throughout the day and it will be a great celebration of Brandon graduating from his Adult Transition Program, raising a few dollars for the trip to Liverpool and London and will include a few Beatles tunes throughout the evening and plenty of surprises.  It will be a great time to spend time with friends and family and meet a few new friends.  I look forward to seeing many of you there and know this will be a special night.  We will have more information next month on the event.

The other part of the fundraiser was to auction off my 1966 Epiphone Casino guitar I had sitting in my closet since 1975.  This is a guitar I bought from my brother when he needed a little extra cash. Being a musician in 1975, I had several guitars and keyboards, so I added this special girl to the collection.  I played it a few gigs, but when I usually played it was either keyboards or my acoustic guitar.  I decided to finally auction it off through a friend who owns a guitar shop.  Before I could get a post online, I had an offer I couldn't refuse.  The funny thing about this guitar that I didn't know, is this guitar was designed after a guitar John Lennon played and all the Beatles had one of these. George Harrison had one almost exactly the same as this one with a Bigsby tailpiece.  So it seemed perfect for this occasion to sell it as part of this fundraiser. Here is a little history on the guitar.

http://www.vintageguitar.com/5485/the-beatles%E2%80%99-casinos/

I will miss the my old guitar but I hope someone loves it as much as I did.

I will leave this post with a link to Brandon's video he made about the Beatles and his love of the Beatles.  

Brandon's video https://www.youtube.com/watch?v=9qxub4B6R4E  

Thank you everyone for all your support and love of Brandon.  It makes my heart melt.  

Love Leah.