I think it has to be okay to find a way to communicate our sorrow honestly, in a way that is true to how we, as parents feel, and at the same time respectful of our children's integrity and a wider community's concerns about how we talk about all things autism.
There are times when life kicks us in the gut and lands us on our ass. Applying for guardianship of a child who is reaching adulthood is absolutely one of those times. It is a raw, visceral pain, one that slices into our hearts and cuts us to our core. It's the moment where denial is once and for all washed away, dashed, and the reality of probably-wont's takes up residence in our being.
Bobby will be 23 this year--five years since we applied for guardianship. This year I will once again fill out the paperwork to extend the guardianship another year. I will write down how he spent his year, how things changed for him or did not, whether he engaged in recreational activities. I will account for the decisions made on his behalf and ask that my husband and I continue as his guardians for another year.
The first couple times of doing this were painful, a continued reminder that the disparity between Bobby and his peers simply continued to widen.
It's still not a piece of cake to do the paperwork. It's not something I'm ever going to celebrate--it's not something a parent should. But the reality that my husband and I stand by Bobby, not as his decision makers, but as his guides, as his support system to help him make good decisions about his life changes a painful process into a meaningful one, a chance to take stock, not of the disparities, but of where the year has taken Bobby, what skills he has learned, how he has grown, his increasing autonomy, his growth, his happiness.
Being my son's guardian makes me his protector, his teacher, his guide. It does not mean he exists in eternal childhood, never to reach manhood. My son is a man, a grown man with feelings and beliefs and wants, and the more I entrust him with the chances to make his own decisions, the more he grows and is capable of making those decisions.
We can, as parents, choose to remain in the raw, visceral pain that we will and do feel as our hearts ache for what we want our children. It's completely understandable that parents want for their children everything we have, that the loss of that hurts us, hurts us both for our own loss and for our children's loss, as well.
We have a right, as parents, to be angry, to be outraged, on our children's behalf for the lack of needed services our adult children need. We should be mad that there are no clear roadmaps, no easy route to follow to figure out how to make our children's adult lives as rewarding and fulfilling as possible, to find them meaningful work, safe living spaces, freedom from abuse and disrespect.
Of course we are terrified for our adult children when we think to a future where we are not there to assist; we worry about whether the world will be a kinder place because of the work we've done with our allies--other parents, autistic adults who blaze trails for our children, and concerned citizens and service providers. We worry about who will stand with our adult children and help them where they need it, look out for them, care about them.
Because our adult children need a community, need people in their lives who care about them, we must work to create that for them while also letting go enough to let them create it for themselves. We have to push ourselves not to opt for the safe route, keeping them isolated and safe and protected from the world. Instead, we must accept a lifetime of living on a tightrope, always pushing not just ourselves but our children to try harder, to accept some level of risk, to go out into the world, pushing the boundaries.
Instead of retreat into the pain that the loss of an accepted pathway to adulthood and independence makes us feel, as parents we have an obligation, a sacred trust, to our children to guide them towards as much autonomy as they can handle--and we don't know what they can handle until we let them try and risk.
I may hold guardianship for my son, but it does not mean he is a legal child, nor that he will always be, for the rest of his life. Each year, we must reapply--it means that he is not yet ready to stand alone. Not yet. It means I stand between him and those who would take advantage of him. I am his counselor, his ear, but I am not his stand-in. I am not living his life. He is, and as such, each and every decision he can possibly make about his life should be his.
We can wallow, as parents, or we can take stock and put on our big girl and big boy pants, and work to create a world where no one falls through the cracks, where abuse is not tolerated, where respect is given to all people, where accommodations are the rule not the exception.
I am confident that when I no longer walk this earth that my three children will be okay. I choose to believe that with their efforts and mine and our community's efforts, we can create an environment where they will continue their lives, getting the assistance they need without compromising their autonomy or integrity. It means being a part of the community, working in the community not just for my children's sake, but for all our children's so that a support system exists and that checks and balances exist to minimize the blind eye bureaucracies so often turn. It means having a little faith that my children (and yours) will grow and learn and build meaningful lives where interdependence is the norm and misguided notions of independence are left behind.