Sunday, July 22, 2007

A Perspicacious Picnic

This weekend we have had the opportunity to meet a Los Angeles native who is in the production and film business. His "real" job involves writing for a gaming network on cable television, but his intended avocation is to film and produce documentaries. His current project involves FASD (fetal alcohol spectrum disorder), and his connection to us is having read first of all Claudia's, and then Claudia's friends' blogs. He has been in email contact with Claudia for a number of months and then arranged to be in Minnesota for a few days, meeting with professionals who deal with FASD as well as parents (professionals in another sense, I would say) who live with the diagnosis. He is a bright, engaging, articulate guy who will, I am sure, do a great job on the upcoming documentary. This morning he will be in worship at our church, join us for lunch and then interview me this afternoon.

Last night our family friend Kari (who also works with MOFAS, Minnesota Organization on Fetal Alcohol Syndrome) organized a picnic in the park with families and their children who live with FASD. Our four families enjoyed the time together, but I was acutely aware that one of the best subjects for the documentary was unable to be with us, our son Mike. If you are a regular reader, you know that Mike turned eighteen this past March and has successfully accumulated a number of legal charges against himself and now sits in our county law enforcement center awaiting trial. I couldn't help but wonder last night what the picnic might have been like five years ago, shortly after Mike received the FASD diagnosis. At thirteen we had already parented Mike for four years, unaware that his issues were deeper than the RAD (reactive attachment disorder), ODD (oppositional defiant disorder) and ADHD (attention-deficit hyperactivity disorder) that we were aware of when he came into our family. We had worked diligently during those first four years with Mike to behavior modify, consequence and "love and logic" him into compliance. Every attempt failed. We wondered why, because we knew Mike had a solid IQ. We questioned our parenting abilities and approach. We wondered if perhaps we were too strict, or too rigid or too callous (all accusations Mike lobbed against us repeatedly). It was a bit of a relief, actually, to discover Mike's issues were related to a deeper condition resulting from the organic brain trauma of pre-natal exposure to alcohol.

But with that relief came a whole new array of challenges as Mike began to run from home for days on end, involve himself with peers and families of questionable ethics and morality, and become involved in antisocial activity that we knew would lead to more significant criminal involvement. We did not give up then, though. We did our best to provide consistent boundaries, consequenced behavior as immediately as possible, and continued to show as much love and support as we could muster. It was difficult to maintain a positive attitude and kind spirit in the presence of such unbridled hostility, confusion and blame, however. And so we were not always successful in being "non-anxious presences." But we tried, we did not give up.

Even when it became necessary for Mike to have more intensive services not afforded by his insurance (services beyond weekly therapy), and when the county in which we lived deemed it necessary to bring a CHIPS ("child in need of protection or services") petition against us, we placed ourselves into the unenviable position of suspicion (typically a CHIPS petition is initiated against parents who are neglectful or abusive as a means of placing a child out of the home) in hopes that Mike might gain some benefit from residential treatment. For months, even years, we traversed the swampy quagmire of this insulting, irritating legal process. But we did it for Mike because we didn't want to look back and say we hadn't exhausted every option possible.

And today I look back. Mike is now legally an adult (although this is really a ludicrous legality), so his behavior is legally no one's fault but his own. The choices he has made have now caught up with him; he will be haunted by them all of his life. And so will we. I will wonder, although not with as much self-condemnation as in the past, what we might have done differently. I will ask God what we can do now to help Mike (I'm afraid I already know the answer though ... "not much"). I will write Mike letters addressed to whatever correctional facility in which he will find himself incarcerated. I will never forget him nor leave him behind, although his diagnosis has caused us to be left behind.

These were all the thoughts running through my mind yesterday as we gathered with others whose children have similar diagnoses. The children we saw last night (all of whom we have met before) remind me of what an uncertain future they and their parents have in the years ahead. They are younger than Mike, but one day they too will see the adult face of FASD. I have come to learn that if a child with FASD can at least trust his or her caregiver (which Mike is unable to do as a result of his RAD and ODD) s/he has a good chance. Things will not be all that rosy, necessarily, but at least the child has a better chance with an adult who can function as his/her external brain.

Even with those advantages it will be a difficult and uncertain journey. The telltale signs of the FASD challenge are very present in our children when we get together with other families so affected: the impulsivity, anger control issues, lack of boundaries, overweaning trust of strangers, mental confusion, distorted perception and understanding.

To parent a child with FASD is a lifelong adventure that does not cease at the age of legal adulthood, I was reminded yesterday. As in all of life there are no guarantees and their are not certainties. The only guarantee and the only certainty is that we parents will continue to be resilient and mutually supportive, doing our best to provide a foundation of care that on the best of days appears a bit shaky. It was, for me, a perspicacious picnic.

1 comment:

Mike said...

Bart,

As always, really well said. I had a great time meeting your family and I promised Mike I would stay in touch with him via mail as well.

Thanks again!