Tuesday, March 30, 2010

No Small Victory

Often my life feels like a series of small victories. Mothering three young children requires a lot of negotiations. And while I hope for win/win scenarios where the kids and I feel equally satisfied with the various outcomes of these negotiations, in the end, I’m still looking for victories. One of the nicest benefits of 12 years of Mom-experience is that I’ve learned which battles to pick, and what’s truly important.

As soon as the alarm sounds (usually in the form of four-year-old Truman climbing in bed next to me, laying his hand on my cheek and whispering, “Mommy, are you awake?”), the quest for victory begins. We start with the three kids to get out the door to three different schools at three different times. I cross my fingers that picking out their clothes will be smooth. It seems that Truman only wants to wear STRIPES, and of course no stripped clothes are clean! “Maybe just for today, you can wear a dump truck shirt,” I offer. Geneva, who is 12 years old, has an aversion to most socks; they never feel good on her feet. So, I hope that each morning her socks will go on her feet without my hearing about it. And as a family, we negotiate with and overcome these sorts of obstacles all day long. What? Truman thought that it was HIS turn to close the garage door? More negotiations ensue. Next time, Little Man. What? You don’t have to go to the bathroom? Well, we’re going on a three-hour car trip, so how about you get in there and use the potty anyway.

Of course, I’ve learned the fine art of giving the kids the illusion of choice. When they’re young, it’s, “do you want to drink from a blue cup or a red cup?” Either way, they’re drinking what I’ve chosen. With the oldest, it’s, “would you like a sleepover Friday or Saturday night?” The goal was one sleepover night, not two, as would otherwise have been requested.

And with my sweet, special Jukie, victories are non-stop. Much of my time with Jukie involves my simply trying to control the chaos while allowing him as much freedom as possible. We’ve put a lot of thought and energy into exploring how we as a family can coexist happily, with as many win/win outcomes as possible. And when I’m on Jukie-duty, the negotiations are active and constant. As a result, I rarely sit down at home. Who needs a gym?

Perhaps these constant tiny battles prepare me well for the big ones. A few weeks ago, I went to war against Jukie’s county regional center (Alta California Regional Center). As you may know, in California budgets everywhere are depleted, so perhaps we should not have been surprised when Alta informed us that they would no longer be funding Jukie’s Care Trak monitoring system. This system involves an ankle bracelet which emits a radio signal so that Jukie could be tracked by the local police department everywhere he goes should he escape again. Because Jukie has a history of running away, this anklet is vitally important to his well-being. After telling us that they were planning to cancel support for the program (which a local activist and Mom raised the money to initiate), Alta offered a series of silly compensatory suggestions: that we install an elevated lock on the front door, that we try “behavior modification,” and that we employ “direct supervision.” Gee, why didn’t WE think of any of these helpful hints?! I hope my sarcasm is evident. Anyone who has ever met Jukie for five minutes would have been able to assess Jukie’s skill at climbing and at defeating that front door lock tactic (as he began to do in preschool). And behavior modification? We’ve been modifying Jukie’s behavior with the help of every professional we can get our hands on for nine years now. Alta’s suggestion that “there is no substitute for direct supervision” felt like an especially cruel joke. My response to them was, “we are HUMAN. We do require sleep each night!” Of course, we directly supervise our boy every minute of the day! He even sleeps with a night-vision video monitor on his bed. With all of our vigilance, Jukie has still escaped – twice!

Round one: my husband Andy and I met with Alta representatives for an “informal meeting” to try to come to a resolution without involving the courts. Because we believed that Alta would listen to our reasonable argument, that the agency should continue to fund the monthly cost of replacing the batteries and straps on his ankle bracelet, we agreed to this meeting. That’s not a mistake I’d make twice. Alta’s legal consultant sat in and acted as judge, an “impartial arbiter” I think she called herself. Huh. This didn’t bode well, but the woman seemed friendly enough. We brought with us the coordinator of the Care Trak Program, a wonderful police officer named Michele. Along with us, she spoke of the necessity of Care Trak, and demonstrated the pings coming from her monitoring device, which belong solely to Jukie. Did I mention that we brought Jukie? If the Alta folks were to understand our argument, they’d need to see and meet Jukie. Surely, they’d conclude that he needed to continue to be monitored through the Care Trak. The meeting took about an hour, during which time Jukie ran around in circles, tried to climb the blinds, untied everyone’s shoelaces, tried to escape the room, and ate from the trashcan. You GO, Jukie! Show them what'cha got! And let them see what a precious little boy you are, so worthy of tracking.

As we left the building that day, I said to Andy and to our trusty police officer, “I’d be shocked if they didn’t rule in our favor.” One week later, we heard Alta’s decision. They did not rule in our favor. Did we still want to pursue this, they asked? I imagine that at this point many parents would quite understandably give up. These sorts of battles require large amounts of time, energy and perseverance. Taking the matter to court before a judge can feel incredibly intimidating. Did I want to pursue the matter? Absolutely! Pursue!

Round two: once again, Andy, Jukie, our police officer and I reconvened, this time, sworn in, speaking into microphones, and before a judge. To our surprise, our Alta opposition this time was lead by that former “friendly” and “impartial” legal consultant. Now she is acting as prosecutor, using against us every argument we made at our “informal” meeting. Andy and I have no law background (unless you count watching an occasional trial – hello OJ – on TV). We had thought we’d just be explaining ourselves directly to a judge. Instead, we found that our hearing would be conducted like a real court case, which, I guess it was. Opening statements! Called witnesses! Cross examinations! Objections! Quickly realizing that Andy and I were out of our comfort zone (not to mention our league), we decided to step up and act the part. “How about I play lawyer, and you play witness,” Andy whispered. Fortunately, Andy is a seasoned public speaker, quite used to running meetings. And of course I knew the ins and outs of our case. We could do it. While Alta was presenting their case against us, I feverishly wrote down a long list of questions for my husband/lawyer to ask me.

Alta began making the case that because Jukie wears a MedicAlert bracelet, funding the Care Trak monitoring system would be a duplication of services. Again, we heard about the importance of direct supervision. Our “friendly” prosecutor pointed out that I had turned down a referral for behavior modification, which she somehow made sound terribly irresponsible of me. We couldn’t wait for our turn to speak! Soon enough, Andy was cross-examining Alta with fabulous questions, such as, “is Jukie wearing a MedicAlert bracelet right now?” They couldn’t say, for as the woman from Alta was forced to admit, she could not see the bracelet under Jukie’s sleeve. “If you saw Jukie sitting quietly, playing alone in the sand at a park, would you know immediately that he needed intervention?” he asked. “No,” she admitted, she would not. Sitting alone, playing quietly in the sand is exactly what Jukie was doing when he was found after he climbed our fence and ran a mile away to a favorite park.

When it was our turn to testify, I pointed out that the MedicAlert bracelet kicks in when Jukie is found. The Care Trak anklet is activated the moment he is lost. Jukie doesn’t speak. He doesn’t fear traffic or people or most any other danger he should. I told the judge that Jukie had proven his own case. He had already demonstrated the importance of tracking him. There was much more to our argument that I won’t go into here. His police officer testified again. The whole case went on for over two hours.

A funny thing happened when we left the court that day. I felt exuberant. Whatever happened, we felt as if we had already won. Andy and I came together over yet another (unexpected) bonding experience. We ultimately enjoyed “playing lawyer” by reading each other’s minds to make up for the absence of preparation (22 years together helps), and using each other’s strengths. We stood up for (and WITH) Jukie and for all of the children in the county who use the Care Trak system.

As I walked into the post office the other day, I knew that the certified letter waiting there must be from the court. Letter in hand, I ran back to my bike and decided to wait to open it until I arrived home. But, I didn’t make it home; I couldn’t wait. Instead, I stopped at a bench on the greenbelt and ripped open the envelope. The first words I saw were, “claimant’s appeal is GRANTED.” We won. Jukie won. Yes, precious boy, you won. You are so worthy of tracking. I will follow you everywhere.