Back to Square One

I haven't posted for awhile for a couple of reasons. One is that things for Liam at school have gotten really bad and I don't like to be negative. His behaviors have gotten progressively worse to the point where they're as bad as they were a year and a half ago when we were at rock bottom. He's lost another year academically. I've had to get very confrontational with the school district and have to be careful what I say about that situation.


On another note, last week I attended a legislative breakfast with a friend. It was interesting, but not what I expected. It's a chance for special interest groups to get together with state legislators and discuss their issues and agendas. I would imagine that these types of gatherings are taking place all over the state at this point. I expected to be seated at a table with at least a couple of policymakers. This was not the case.



The big name for this breakfast was Tony Gwynn. He and his wife have a foundation which raises money to fund programs for underprivileged youth. Tony's wife, Dr. Alicia Gwynn, really impressed us with her presentation. She spoke in very specific terms about the challenges facing people with developmental disabilities in California and what should be done to meet those challenges. No other speaker at this event made such a strong impact. At the end of the breakfast, I rushed to shake her hand, introduce myself and thank her for her commitment.



Another speaker (staff member to a state senator and parent of two children on the autism spectrum) used her time to recount the pain, confusion and isolation she experienced when her daughter was diagnosed and how she fought her way through it. She spoke of autism in very negative terms in front of her daughter, who looked to be about 11 or 12. My friend and I had trouble sitting quietly through this presentation. My dilemma with a speaker like this is that I don't want to judge or criticize another parent of an autistic child. We get enough judgement and criticism from outsiders. I just don't know how much is achieved for our children, however, when we make the issue about what we've gone through and how hard it's been on us as parents. It is more helpful to present possible solutions to the challenges our family members face.


Linda Thompson, from People First, presented a positive, inspiring viewpoint. As a woman who has cerebral palsy, Linda advocated for policies and programs that empower people people with disabilities to live independent, fulfilling lives.



One speaker towards the end (a lobbyist and parent of a child with special needs) did something really ballsy. He referenced all of the legislators who had been named at the beginning of the breakfast and asked how many were still there! Most of them had left--a sobering reminder that a lot of what we have to say will not be heard by those who are in a position to take action for our family members. I still left full of hope after witnessing so many people attending and participating in an event to support people with developmental disabilities in California.