Monday, August 20, 2007

Additional Evidence That He Doesn't Really Get It

One of the most frustrating parts of having a son with a mental health diagnosis is that those looking in do not understand its reality. Most of our kids have the ability to maintain themselves well enough in public that those who see them only in these venues must think that we overexaggerate when we describe what it's really like to live with children who have challenges.

When, for example, our reactive, defiant, oppositional son Tony visits his grandmother's (my mother's) house, he holds it together very well. Perhaps it is because he is the only child and his needs for complete attention are readily met, or perhaps he feels the need to be especially good when he's with her or perhaps it's not even that intentional on his part. While it is good to hear that his behavior has been great when he is there, often the news is delivered with a bit of questioning as if to say, "so there must really be something wrong with your parenting or his home life because I've never seen him act like that."

Our fourteen-year-old daughter, even at her snippiest, has the ability like a chameleon to treat her friends, their parents and other adults with appropriate respect. She displays more-than-acceptable public behavior, so when we might allude to her rebellion or to her opposionality, we sometimes get looks that say, "it must be really awful in your home for her, then, because that's not what I have experienced."

The best example of what I'm talking about, however, is our son Mike. His FASD diagnosis is lost on many onlookers, because he presents very well. He is personable, able to carry on a relatively intelligent conversation. He has learned to be fairly charming and likeable. But when it comes to the more sophisticated levels of brain functioning he is not able to compete with others his chronological age, nor is it likely that he will ever be able to. I was reminded of that again last night when I talked with his landlord. In the midst of our conversation, in which she expressed frustration that after three warnings Mike still did not seem to understand what it means to have no one in his apartment, she said, "Mike told me what he expects a landlord to do." "Oh, really?" I asked. "Yes. He told me that a landlord installs cable television, internet access and telephone service." I smiled knowingly and said, "I'm sorry, he just really doesn't understand much about life, does he?" "And he's not interested in getting a job, has no food in his refrigerator and is not going to be able to pay his utilities," she said pensively. "That's what Claudia and I find so frustrating, too," I said, "that he doesn't really understand what this is all about, but he is unwilling to listen to anyone, and he believes that he is absolutely right."

It is hard for me to blame someone who has a brain like Mike's. I am not excusing his behavior or his socially unaware expectations; I simply try to explain so others understand that his thinking process is not like everyone else's, and regretably, he is so impaired that he doesn't even recognize it.

That's why I've said many times that Mike's biggest liability is his IQ. He scores quite high on intelligence testing, because that part of his brain is unhindered from its ability; but it's not the injured part of his brain that is tested, so on paper it appears that he should function much more normally than he does. Unfortunately society has little time for individuals with invisible disabilities. Society assumes that the individual in question is a liar, or a manipulator or a malingerer. It has been only in recent decades that larger society has understood much about disabilities like what was formerly called mental retardation, so I guess I'm simply asking too much for society as a whole to understand something less tangible, like FASD.

The only way society has been able to deal with this impairment with any sense of effectiveness is through the criminal justice system. And that's the real crime, because people with brain malfunctions shouldn't be consigned to a life (or portions thereof) of imprisonment for something they really did not cause, nor for consequences they cannot seem to understand.


debbie said...

you are really right on with your comprehension of mike's thought process. what your other kids experience with others is what we call in our group "honeymooning". nothing is really expected of them and surface behavior comes easy as there is not much thought behind it. i recently had a relative tell me they had their stepnephew who is 13 and diagnosed with FAS visit with them for 2 weeks and they had no problems at all! must be the parenting. i calmly said, well then, why don't you go the institution where he is living and tell them that you want to make a committment to him, they will be thrilled! they ummed and ahhed and mumbled something. oh, i said, then it doesn't really matter what you think, does it? he needs a commitment. the bigger question is, what do we do with these children, who remain children even in adult life?

Bart said...

Your final question, Debbie, is so important. Because at 18 our son is legally an adult, and because there is no legal reason for us to pursue any type of adult guardianship on his behalf, coupled with the reality that he would not be responsive to our "intrustion" anyway, there is so little we can do. As a society we really need to make some progress with this issue on behalf of people with FASD!

Mike said...

That question is a really good one Debbie. I'm working on a documentary about FASD right now and what am finding is that there are a lot of kids who are too high-functioning to be considered "disabled" and yet they clearly can't really take care of themselves.

The answer, right now anyway, is that most of these kids wind up in jail or homeless, even if they have loving families. We need to establish residences for people who fall into Mike's category of disability.