The Leah and Brandon Blog: November 2014

I haven't posted for awhile. My darn computer had a bad virus and it deleted some about to be posted posts. But all clear again. This is been a very busy start of the school year. I hired a new aide to work with Brandon which always takes time for training and understanding. That is now going very well. Brandon is in his last year of school in the Adult Transition Program and our only goal is for a smooth transition to life after school. We have a little more than 6 months. I know that these last few months will go very fast. I am anxious for them to be over and for Brandon to move on with his life but at the same time I am not ready to loose the love, support, and dedication the school has given to Brandon these last 3 1/2 years. So I have mixed emotions as we move through this school year. To think outside the box this year I have made some major changes in Brandon's transition plan. I hope these may be of some use to other parents as they search for that right answer for their own child's transition. So far these changes have been great but they have all required effort from me, Brandon's network, Brandon's attendants and Brandon.

First, the school just could not find the right job for Brandon for his second job. In addition, Brandon will move back out to Dripping Springs to my mother's house next door and I wanted the job to be closer to this house. After struggling with the fact that the school should be finding this perfect job, I realized that this is a major transition year and I needed to take this on without the support of the school. So on Monday's and Wednesday's I pull Brandon out of all or some of the school day to go to his new job in Dripping Springs with a major durable medical equipment company. At the company he sorts and delivers mail. I knew that without the support of a job coach and an attendant this would be difficult. The ultimate goal is for Brandon to be dropped off at a paid job and perform job duties for a period of time each day. Brandon would be so proud of himself, have a sense of accomplishment and be surrounded by peers at his work encouraging him each day. But before we get to this point Brandon needs to learn as many job skills as possible. His new job is a perfect setting for him. Without much luck at DARS and finally working through the "sort of okay" of DADS, I have moved forward with a job coach for Brandon at this job in Dripping Springs supporting Brandon and his aide So far this has really been successful and I was lucky enough to find a retired special ed teacher ready to take on this challenge along with his new aide. As Brandon completes school we will readjust to what works best for him. He is adding new skills as he progresses in this job.

Secondly, I hired a facilitator to facilitate Brandon's personal network. I am a very "type A" personality and I decided it was time to take a back seat and let someone run the personal network for Brandon and allow Brandon to take more of an advocate role for himself. Brandon has really become his own man and is learning day by day how to advocate and speak for himself. It is really exciting to see. The network is working on obtaining and maintaining jobs for Brandon, housing for the future and Brandon's most important topic after graduation- his trip to London and Liverpool for the International Beatles Festival. We have work groups from the network working on all three of these topics.

Third is housing for the future. Brandon is in his third year living with Chris his companion in a condo close to his school in Austin. In June, Brandon will move back out to Dripping Springs to my mother's house next door. Modifications were needed for this to happen. I have been working since May to make changes to the house to accommodate Brandon and leave the most flexible options possible for his move. The house will allow for another person with disabilities to live with Brandon and will also allow for a companion as well. The house has monitoring in all major rooms so in the event Brandon is alone my brother or I can monitor on our iPhone if needed. It also will allow Brandon to call both of us in the event he needs something and will allow for three way conversations. I also modified the house with a drain in the bathroom in the event the bathtub overflows, smoke alarms in all areas of the house, a therapy tub for Brandon, key-less entry, touch toilet and sinks and a more private area for the companion. All doors have been modified in the event Brandon must use a wheelchair as he sometimes does during illness. We will also build in notifications for Brandon's daily reminders like we have today such as getting clothes ready for the next day, brushing teeth, shaving, etc. I have no idea how independent Brandon can be, but I wanted him to have as many tools as possible for his success.

I have worked with Brandon's attendants, his job coach and Brandon on a list of areas of focus for the rest of the year. The plan is to focus on a list of living skills Brandon should work on to help him become more independent. We also have listed job skills, socialization and health and fitness goals. It is comprehensive and focused on those things that can help Brandon in the future. Brandon still goes to UT speech and hearing and they are focused on Brandon's communication in the community and with his work peers. Brandon also went to a great UT course about the History of Rock and Roll. He loved it. He is still singing in We are the Chorus.

Right now life is good and it is going to get even better. Brandon also went to his brother's wedding in August in Denver. I was really proud of him because he wanted to do a short speech to Patrick and his fiance Caitlin. He asked me to help him program what he wanted to say into "SonoFlex". We programmed it on the airplane on the way to Denver. Brandon said:

"Congratulations Patrick and Caitlin on getting married. I am happy to have a sister. Mommy is happy because she has a daughter. I hope we can all do fun things in the future. Caitlin I hope you love the Beatles. If not I will teach you. Patrick I hope you are happy. I love you and miss you."

Brandon pressed the buttons and presented his speech to everyone at the rehearsal dinner. There wasn't a dry eye in the house. He meant every word and was so proud of himself. I was really proud of him for taking the effort and saying what he wanted to say. That is not easy for Brandon and he showed great courage.

A few Brandon highlights since the last post.