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