My elder son Sandro is in his early 20s, has autism, and lives with his girlfriend in a rather chaotic, dysfunctional and unhygienic environment. He doesn’t (can’t) work and lives on a ridiculously low level of social security ($730/month), which he combines with Valerie’s somewhat larger income. He is impulsive and not a very rational person, especially when he doesn’t take any medication–and he quit taking medication when he moved in with his girlfriend. He has a lot of anxieties, is easily manipulated and was scarred by his dad’s blatant preference for his younger brother, who does not have any disabilities.
I posted the other day that I refused to give Sandro money for something I perceived as wasteful and not in his real interest.Of course I have been thinking, again, about the philosophical and moral questions about who decides what is in the interest of a young adult with a disability. For generations, families and courts have taken the right of self-determination away from people with disabilities; sometimes they have even taken away their ability to live in the world and restricted them to asylums. This is so horrifying that I have probably always erred in the other direction and perhaps not provided enough structure and direction for Sandro. (This tendency would only be increased by my life-long struggle with boundaries.) I believe in empowering him to make his own decisions, even if I don’t like them. I believe in treating him, as much as possible, like an adult, even though his thoughts and actions are more like those of a 12-year old.
But I do want to keep him safe. He is very trusting and gullible and has been cheated out of money multiple times. Out of love and loyalty, he can be manipulated into standing up against a potentially violent bullying, but he hasn’t the least clue about how to defend himself. He can’t prioritize, so he often spends all him money early in the month and calls for help so the phone or electricity won’t be shut off. If this were my other child calling, especially if it happened repeatedly, I wouldn’t give the money, so he could experience the “natural consequences” of not managing his money. In Sandro’s case, his disability affects his judgment and his ability to learn from past experience, so that makes it extra complicated to decide what to do. I have tended to pay those overdue bills for him. I shield him from information, sometimes, that I’m sure would trigger anxieties he has no skills to manage.
My son doesn’t ease my search for the right balance between empowerment and protection. “I’m an adult!” he has told me emphatically, “I can do whatever I want. I just need you to give me money…” I might also note that I battled the bureaucracy for 18 months to get him eligible for vocational support to see if he could get a job, and then, on impulse, he decided he didn’t want to participate. They closed his file.
In terms of my decision last weekend not to pay for something I saw as pointless, I had to decide that Sandro is allowed to want what he wants and make his decisions, but I am not required to fund all those decisions. I am empowered to choose if and when I want to provide additional money to help him out. At least I think that’s where I’ve landed at the moment. This is a question I will probably be revisiting for the rest of my life. I may never get it right.
In the meantime, it’s very important to me that he knows his mom loves him, so I’m sending over some homemade brownies and a note. Whether or not that breaks his current angry silence towards me is irrelevant. The point is for him to know, underneath the anger, that he’s loved.