My son Justin is a loving, happy and sometimes hilariously mischievous soon-to-be 18 year old young man. He also happens to have moderate to severe autism and is mostly non-verbal. Over the past months as he approaches his 18th birthday, I have become acutely aware of how soon his 22nd birthday will be here, as will his subsequent aging out of the educational system.
Over the past years I have given thought to what I want for my son in his adulthood, as well as how his disability will impact his older brother Scott’s future. My dream for Justin is for him to live in a wonderful community where he can thrive, and to have his affairs set up in such a way where he and Scott will be able to enjoy each other without Scott being financially burdened. I have spent the past three years getting my MBA in an effort to arm myself with basic knowledge to make this dream become reality. Now that I have begun my research in earnest and to truly sink my teeth into this project I am faced with the realization that the business aspect of it will be the easy part, and find myself seeing the immense need to make big changes at the community, state and federal levels in order for this project to become a reality.
I intend to start a community for my son and other adults like him that includes housing, work and social activities that focus on integration with the community at large. My first real plunge into researching how to do this was at the A Place for Us conference in October. The experience was eye-opening, fascinating, more than a little bit scary, but most of all, inspiring. I was in awe of the achievements of the speakers who were also parents, as well as those who were not, and felt intimidated by all the hurdles I came to realize need to be overcome.
The people I spoke with at the conference were all extremely supportive and full of ideas, and helped boost my confidence that it is indeed possible to accomplish my task. At this juncture, I realize I know next-to-nothing, and my main action item is to soak up as much information as I can so I ultimately can distil it into a usable framework of concrete tasks. I learn best by doing, so I have become involved in a housing networking group and am volunteering for the San Francisco Autism Society. I will learn by becoming an advocate for the autism community as well as continuing to be an advocate for my son, and by doing what I can to make changes to a system that has much catching up to do in order to serve this currently extremely underserved and exponentially-growing community.
I am sure that my ideas and plans will change and evolve as I learn my way around the system’s requirements, idiosyncrasies and challenges. I know this journey will be a difficult one and my strategy to cope with the ups and downs is to embrace the uncertainty and chaos. When I become overwhelmed, I will remind myself why I am doing this by catching the impish gleam in my son’s eyes and knowing how beautifully he will flourish in an environment that meets all of his needs as well as allowing him the level of independence that is right for him.
The author lives in Union City with her son Justin, and his dog Flash