The things that make a life good seem universally accepted to include friendships, home and security, work or leisure that allows you to pursue your skills and interests, making a contribution, good health, choice and control over your life and more.
From birth they are usually directed into disability specific, separate and segregated settings that can last through adulthood. They are cast into negative roles of being sick, a burden on our family, dependent on others and not contributing to their community.
So we families must be intentional, good life builders. We listen deeply to our family members with a disability to understand what is important to them. We create and hold dear their vision for a good life.
We work hard to craft valued roles for our family member around what is important to them to bring them opportunities. We problem-solve and work around the many hurdles that fall in our way. We find ourselves creating plans, managing budgets, recruiting and leading teams of supports and doing things we never imagined doing.
I’m there too. I’m with you. I’ve got your back and our community has too.