Advocacy is a complicated process, and hard for da Mama. I like working collaboratively and creatively to solve problems and have noticed through the years that others, especially those in public service, often for whatever reason do not prefer this method. Those in command seem to want to dictate terms that are the most convenient for them and their system, and depending on their level of authority, impose those terms upon all comers without regard for circumstances or individual situations. Those who object strongly to the terms are then labeled in the most condescending and humiliating ways deemed necessary to silence any future brave souls who might raise their hands and criticize the criteria people are using to make decisions.
It's all okay if YOU provide, fund, and manage your solutions. However, solutions to complex problems like autism are hard at best, and I have all I can do to manage my own. Arm-chair management of a bureaucracy at range without authority and the constant need to put in requests for accommodations to be made for one child (whether or not that child has a WHOLE HUGE peer group arriving on the scene in the not so distant future), is not really practical for this housewife. So, I needed help from someone who speaks their language: the language of law and procedure and actual entitlement vs. perceived entitlement.
As I've talked about this some with friends, it does, however, give me great joy to hear stories of how the original legislative protections for the disabled were created. Someone I know from plurk who has an excellent blog of her own about her journey and life working with the giant machine that is society, was telling stories of the housewives and law students and disabled vietnam vets who gathered in small suburban kitchens in the evenings after the war, who drafted proposed changes to laws and fought to have better schools, better access, and in the end won better hospitality for the disabled from society at large...who fought to NOT have to sit in isolation and watch the world LIVE while you die quietly and out of sight for the convenience of others.
I will go back now to posting our day to day adventures, but will out of necessity no longer post the things which must be advocated rather than vented. Hopefully, with the new help, I won't be so sad and mad and outraged all the time and you'll see posts about the new fire pit in the back yard and smushed marshmallows and "mommy, can I have a bank account NOW please"...you know, the meat and substance of life with da Creature! :)
