Employment is for all

This is the post I was working on this week, but was diverted by the news about Brandon's back.  Brandon is about to enter his last year in his school's adult transition program.  In Texas you can stay in this program as long as there is a need to the end of the year you are 21.  Brandon is still 21 and will turn 22 in December. So he will be able to stay in the program through May 2015.  As a wise friend told me 3 years ago, you have 4 good school years left, so make the most use of your school while you have the great supports.  I have taken that to heart and decided the plan would be for Brandon to leave school with a full week of work, activities, exercise and socialization which would seamlessly continue without the school supports.  The most important part of these 4 years is learning about working for an employer, learning the value of employment, learning job skills and finding the right job from those job trials, trying to become as independent as possible and stretching the number of hours Brandon is about to work.  For most kids leaving high school this may seem relatively easy, but for Brandon this has been a major hurdle and a great deal of hard work for him.  He has received fabulous support from the school, the employers especially UT, Brandon's transition program through UT and Brandon's aides who have continued this work through the summers.  When Brandon starting his volunteer job at UT he really didn't know much about how to work, how to do his job tasks independently, coming up with creative accommodations and learning how to develop relationships with his work peers.  Brandon and his network looked at all the job trials he has had and identified that he does best in a job with interaction with his peers, sorting and delivering items such as the mail and one that is repetitive.  We worked with UT with this criteria and found the perfect job for him to learn, which is sorting mail for a department and delivering the mail.  For UT, this was also a good match because no one wanted to go to the 1st floor, get the mail and deliver the mail.

The school worked on job tasks, provided a job coach, visual assistance, OT/PT assistance and slowly and patiently worked with Brandon for the last 1 1/2.  No one really knew what Brandon was really capable of doing in this job, but no one was willing to give up. In the beginning Brandon needed many prompts, assistance sorting, someone with him all the time, and prompts to initiative conversation with peers.  Here is a video a five months after Brandon started this job.  Lots of support and everyone wanting Brandon to be successful

 Brandon working at UT at 5 months

The aides that work with Brandon in the summer have not seen Brandon in his job since last summer.  But we were about to transition the summer jobs to Brandon's summer aides so Ross was the first one to see the progress Brandon has made in his job at UT.  He went with the school to UT to observe so he would know what Brandon was doing for the summer.  Ross contacted me and said he had tears in his eyes when he saw everything Brandon could do and how independent and happy he was.  That made me feel so good about pushing everyone hoping this would be a success.  Two weeks ago Kassie, Brandon's aide in school/last summer, took Brandon to UT.  This was the first time she was with him for over a year.  Brandon and Kassie are tight and Brandon was really proud to show Kassie his progress.  Brandon did all of his tasks independently, had conversations with everyone along the way, sang and was really happy and confident and went up flight after flight without assistance.  Kassie started to cry.  Brandon asked Kassie "are those sad or happy tears?"  She said "Brandon they are happy tears because I am so proud of you?"  Brandon said "Kassie dont cry happy tears, cry sad tears because you are not going to see Ringo Starr with me" and he patted her on the back letting her know it was okay.  She texted me this and I started to cry.  But I was also crying happy tears.  It is a long road and a great deal of work.  But it is worth it.  Brandon knows he has a place in this world, he is valued and he is confident.  I am soooo proud of him.  Kassie took a video of Brandon working in his job and I have posted it.  Just know that in reality, the school and Kassie/Ross are dropping Brandon off at the building and he is doing this job by himself.  But for the video Kassie followed him around.  You will also see a little Brandon Beatles humor.

Brandon working at UT after 1 1/2 years

One proud mommy
Leah

I am in shock - again!!!!!

Last night I was working on a fabulous post and movie about Brandon and how proud I am of him and his work.  But I will have to save that for another night.  Today I am back in shock, like I have been so many times in the last 21 years.  A new diagnosis, a new procedure, a new direction, all start with shock, depression, learning about what it means, acceptance and moving forward.  I hate the shock part.  And I really hate it when I am not prepared to be shocked.

Today I took Brandon to his new adult scoliosis specialist here in Austin.  He came highly recommended from many sources.  So I was feeling confident about our appointment today.  Just a check on Brandon's scoliosis. In fact I was feeling a little guilty for going in at all and wasting everyone's time.  In 2011, Brandon had his last check at Scottish Rite and the curvature was at 44%.  Below the dreaded 50% which is when the doctors start talking surgery.  At Scottish Rite we decided that Brandon was fine without surgery, he was doing well and he was past his growth period.  He has not gown an inch since 2011.  We all felt confident that Brandon would stay at 44%.  Again 44% is not perfect, but it is manageable.

Brandon had an x-ray at the office and we pulled it up in the exam room.  Brandon has gone from 44% to 52% since 2011 and he has not grown an inch and has the same weight.  This really puzzled me. Apparently there have been new studies that indicate Brandon's type of scoliosis can continue to progress,  The options for treatment is to do nothing, but risk extreme pain for Brandon in the future and possible progression of the curvature leading to a very extensive, complicated and painful surgery in the future.  The alternative is do move forward with the surgery to correct soon which has a high rate of success, less extensive and will repair Brandon's spine.  It's a crap shoot.  One that I don't take lightly.

Brandon would be in the hospital 5 to 7 days (that means 7) and could not go to school or work for 6-8 weeks.  Brandon is headed into his last year of school in the adult transition program and this would be a major consideration of when to have the surgery if we decide to go this direction.  We are planning on going to England next summer so I would want Brandon to be completely healed prior to us leaving.

Brandon immediately said he wanted to have the surgery.  But I reminded him of the pain from the past foot surgery and related that pain to what this surgery would be like.  He brushed off the topic and started talking about the Beach Boys.  I wish I could do that.

This also is not great timing for Brandon related to work.  We are making such great progress on Brandon learning how to work independently at a job and I think we are ready to start looking for competitive employment.  We don't want to lose the progress we have made for the last 3 years.

So I have decided we need to get a second opinion (now I am in research mode), reach out to Scottish Rite for their advise and the great "mom network" for their wisdom.  I am trying to move past the shock and get all the information I need to help Brandon and I make a decision.  But geez, I am feeling a little sorry for Brandon.  There is not good answer.

More later
Leah