Saturday, January 21, 2012

Getting to Yes

Last night, T came to ask permission to go to the movies with his girlfriend tomorrow. A perfectly mundane occurrence in some households, but kind of extraordinary in ours. A constant refrain in our house is "Come with a plan, and ask for what you want in a straightforward way." He started strong, great eye contact, a nice smile, a perfectly reasonable request ("I'd like to go to the movies tomorrow"). But he lost confidence half way through and started to interrogate me so as to try to trap me into saying yes. I stopped him and said, "It's been a good week - why don't you just ask for what you want and see what I say?" To this, he blurted out "I'm afraid because you might say no!"

I imagine that we all feel that way when we make ourselves vulnerable by exposing a desire and giving another person the power to grant it or not. But the fear is really exaggerated in T, as it must be in other kids who've been severely abused from a young age. At a time when he was meant to be voicing his needs without forethought, he was in a situation where even the most basic childish desire would likely be ignored, or lead to punishment, suffering, shame and humiliation. To ask to have his needs or wants met was an extremely risky proposition.

For three years, we have been working with him on asking for what he wants with confidence. In our early days together, he couldn't ask for anything at all - he found it quite difficult to allow himself to want anything in the first place, much less ask for it. We had to start with the basics - eye contact and putting things into words. We would often structure multiple options and ask him to choose, working on identifying simple preferences, as the first step to voicing requests.

As he emerged from his shell and started to have specific desires - a new pair of jeans, a night out with friends - he was like a man who awakens to his last night on earth. The wanting ran wild. He had no sense of "normal". He was so hungry for experiences, and so accustomed to loss, he would go nuts with the exhilaration of the moment. He still does that sometimes, exacerbated by substance abuse - containing himself for days on end, then wheedling/manipulating/threatening/sneaking what he wants. Then he's struck by guilt, remorse and consequences and sequesters himself again. Finding balance will be a lifelong project.

There have been many "no"s in our house lately, as he was in a relapse. We decided to restrict a great many things in order to communicate that we would not participate in or tacitly support his relapse behavior. It's a joy to all of us that he has pulled himself out of the relapse with a great deal of hard work (he voluntarily entered an outpatient substance abuse program where he goes for four hours, three times a week). So it was a joy to give him a "yes" last night.

Getting in trouble or being denied is what he expects and confirms his belief that he's a bad kid. And by the same token, making a reasonable request and hearing "yes" is so abnormal in his experience that he doesn't even know what such a conversation might sound like. He is unaccustomed to being treated like a reasonable and deserving person, and to thinking of himself that way.

He got his "yes". He deserved it, too.

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.
 
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