Friday, January 6, 2012

Patient

This year, I had (technically, still have) thyroid cancer, which is my first significant medical event, pretty much ever. Through that experience, I learned firsthand what it means to be a patient manifesting a disease that is still somewhat mysterious to the medical field. Navigating treatment means consulting with a team of doctors who have different components of knowledge, approaches to treatment, and theories of the disease. In the course of such treatment, I was surprised to learn, it is the patient's job to make the call - to decide to pursue this treatment or that one, to go with this doctor or that one, and to rest content with this test result, or press for another. It was more than I could assimilate on my own, and I needed my partner to help me evaluate information and exercise my judgment about treatment.

That is very much what it's like to seek help for a kid like T. Just as thyroid cancer is fairly rare, a childhood marked by the type of developmental adversity that he faced is unusual. Even within the world of older child foster/adoption, he is unusual - his adoption social worker told me that she found his case shocking. Treatment providers too have rarely seen such a combination of prenatal drug exposure, early infant adversity, long-term abuse, attachment disruptions, and physical/brain trauma - and all this combined with native intelligence, charisma, and sophisticated survival strategies. Of course, they also rarely see an adolescent who voluntarily sought adoption and is attaching to new parents in the midst of all this, a fact that introduces a host of adjustment issues of its own.

For all of these reasons, getting what he needs in terms of mental health care is a complex enterprise involving an evolving small team of providers (two to three at a time). They typically have different methodologies and perspectives, and arriving at a plan requires a fair amount of guess work and a lot of decision-making.

Being his parent therefore means being his medical advocate, among other things. I'm sure that's true of all adoptive parents of distressed, traumatized kids. As we seek to be effective in that role, it has come to me that the recipe for effective parenting looks something like this:

- a huge amount of patience
- acceptance that progress may be partial and temporary
- balance between holding him accountable and recognizing that he has limitations beyond his control
- a flexible and relative set of expectations, particularly around what constitutes a good life
- a willingness to defer to experts with superior knowledge, combined with reasonable skepticism about any one approach
- a thick skin while interacting with professionals who may question one's parenting or assert an approach that you know just isn't going to be effective at home
- love and a depth of understanding the full personality of the child so as to avoid ever reducing him or her to the sum of their disabilities and struggles
- a gut sense of when to "turn it off" and take him shopping for shoes or let him go to a friend's house to give him a break and let him just be a kid

Adolescence is tough for any kid, but it's pretty obvious that it's a whole other level of challenge for kids like mine. I used to tip toe around discussing these disorders with or in front of T, for fear of hurting him. I've learned that I needn't do that - he knows he's hurt and he wants help. He may put up a defensive attitude, but he shows up for every appointment, he lets me speak frankly about the patterns we see at home, he takes his medicine, and he is not reluctant to acknowledge that he's different.

In turn, I make a point of casting things in a positive light by letting him know that we speak frankly about his behavior not to shame him but to help him; we are looking for patterns so that he has information he can share with his doctors as he moves forward into adulthood, and so he can understand himself as much as possible.

At home, our growing awareness of his challenges have informed our approach to discipline for sure. He's nearly 18 now and we've been with him since he was 15. Over time, we've realized that he benefits from restrictions on his privileges and independence in ways that may seem unusual given his age and intelligence. We restrict things these days - driving, cell phones - because his compromised ability to control his impulses and exercise forethought and judgment mean that such things can be like giving adult scissors to a toddler.

Earlier in our parenting adventure, we tried using such privileges as incentives. Frankly, that doesn't work for us at all. Incentives don't work if the child is not capable yet of doing what you're asking him to. We can say to him "It's not safe or smart for us to give you a cell phone right now. Let's focus on the goals we've set, and we'll talk about the cell phone later." The other response that works is "Let's focus on your goal of finding and succeeding in a job, and then you'll be able to buy yourself a cell phone." What doesn't work is "When you do (x), then we'll give you a phone."

I am struck over and over in parenting him how much we (parents, teachers, administrators, employers) are all steeped in the expectation that behavior is the result of appropriate discipline made up of incentives and rewards. That presumes a fairly linear and deliberate mental path, and kids like T take weird unconscious detours all the time. There are unusual factors involving organic brain development, neurological pathways, biochemical mood regulators, and all sorts of other things that confound simple disciplinary techniques. He deserves to feel loved and encouraged to be successful within his realm of possibility, not just disciplined and corrected. And defining his realm of possibility is an ever evolving, expanding work in progress that benefits from feedback from his mental health providers, but also from the support of a parent advocate.

I'm not a perfect parent advocate, and some days I'm not even particularly good. But I do feel strongly that all kids like T need someone in that role, and that we should prepare such parents to exercise a different approach than conventional parenting.

4 comments:

Lindsay said...

i just found your blog and think you write wonderfully. And, that you are one heck of a mom. Thanks so much for sharing:-)

Deb said...

This description of supports and stages reminds me of something I was just reading about Roca, a youth outreach organization in a community near where I work. Their target population is high risk teens (many of whom are on the streets, gang-involved, etc) and they have had really remarkable results with a model they call transformational relationships -- youth workers who connect with each teen and keep meeting with them where they are and gradually draw them into programming. They have a transitional employment program and their description of the behavioral challenges these teens have that impair their ability to work...they say on average it takes about 1.5-2 years in the transitional program but most of the kids do develop the reliability they need to move into regular employment. http://rocainc.org/services_programs.php It is always interesting to me to see how a problem or population that some people would say is just too difficult or a lost cause, other people can figure out what's needed and where to start. Even if it takes a long time to get all the threads untangled and tell that you're making any progress.

Haven't commented before but have really learned a lot from reading your blog.

Deb

semiferalmama said...

Sounds like you might be through the holiday storm and moving forward again (even if your post was a bit about how linear movement isn't neccessarily the goal - I did get that point, really I did.)
I've been thinking about you guys and am happy to read an update.

semiferalmama said...

liSounds like you might be through the holiday storm and moving forward again (even if your post was a bit about how linear movement isn't neccessarily the goal - I did get that point, really I did.)
I've been thinking about you guys and am happy to read an update.

 
Site Meter