A Little Girl in Danger: This Is America’s Health Care Crisis

My dear friend Kirsten has a little girl called Pickles, and Pickles is very sick. Her diagnoses include schizoaffective disorder, generalized anxiety disorder, oppositional/defiant disorder, and attention deficit/hyperactivity disorder. She has spent the better part of the past two years in two residential treatment centers, one in Denver and one here in Albuquerque, plus six in pediatric psychiatric hospitals. There has been a frustrating cycle of days or weeks of improvement followed by a crash and increased psychosis.

Pickles is not safe outside of a secure facility. During her time at the RTC in Denver, Pickles disappeared at about midnight and was missing until the police found her about 4 hours later on a freeway overpass. She explained to Kirsten that E (one of her hallucinations) had said they needed to go for a walk because he had something to show her.

Pickles was, at that time, seven years old. She is now 8 and is psychotic most of the time, in spite of large doses of anti-psychotic medicines, mood stabilizers, and anti-anxiety drugs. In recent weeks, she has tried to stab herself with a fork, gouged her face with a ballpoint pen, and required emergency restraint multiple times. She is not able to go on outings with her group and she has not had an overnight pass with her mom, all because she is at risk of hurting herself or someone else.

She is also funny, charming, kind, and the very prettiest little girl in the world. When we visit her at her RTC, her favorite thing to do is put tiny ponytails in my husband’s hair and put makeup on him. She loves to sing and she loves presents: getting them, giving them, and making them. When her psychosis is quiet enough to allow her to be present, she has a sharp sense of humor and a stunning awareness of herself. She is, ever so slowly, learning to live with and manage her illness.

But she’s not safe yet, and in fact, she remains a danger to herself and others. Aetna Value Options has informed Kirsten that Pickles must be discharged Thursday, December 27, 2012, because she has reached her baseline and she will never get any better. The RTC has told Kirsten that she has no option except to take Pickles home and register her in the neighborhood school.

There are no aftercare provisions in place.

No psychiatrist.

No psychologist.

No respite care.

The education specialist at the RTC told Kirsten that Pickles won’t get a specialized classroom placement until she “fails” in a regular classroom setting.

Does it not occur to the people who make these rules that repeated requirements for “failure” are devastating to Pickles’s sense of herself as a growing girl who is working and striving towards something? That every calculated “failure” strips a little more of her spirit and her confidence?

Kirsten, who knows Pickles and understands her illness the way only a mother can (and more, since she holds a PhD in neurophilosophy), knows that this abrupt discharge is doomed. Her experience tells her that Pickles will be back in acute psychiatric care within weeks, if not days, either when she becomes unsafe at home, or when she has one of the seizure-like rages that happen often when Pickles is overwhelmed, probably while she’s at school, and likely resulting in a call to the police who will deliver her to the hospital, an episode that will be profoundly traumatic not only for Pickles but for all the students and staff who witness it.

After dreadful things happen (a child is hurt, or hurts others), one of the first questions that people ask is: how could her parents have let this happen? Why didn’t they get her some help? What we don’t see is what is happening here, namely, her mother is totally dedicated to getting Pickles all the help she needs, but she is being prevented from protecting her daughter. She is also being prevented from protecting the children at her neighborhood elementary school, her own safety, her neighbors’ safety, and the resources of local emergency responders who will be called on when Pickles hurts herself or someone else.

If Pickles bolts (which she has done often), what if she is hurt before her mom, school staff, or the police can find her? If she rages, what if she hurts someone before she can be restrained? At her RTC, she requires “C-teams” (which is a technique involving two staff members who help her calm down while standing ready to restrain her), restraint, and emergency sedation on a regular basis. None of those techniques is even remotely available in a regular public school classroom or her mom’s home. What if her hallucinations tell her to hurt someone? What if she becomes so overcome with frustration at the constant battle inside her own head that she tries to take her life?

What if she succeeds?

Everyone who knows Pickles agrees: she’s not ready for discharge. Her psychiatrist, her psychologist, her mom, and Pickles herself all know that this is a terrible idea. She cannot be kept safe in a home environment. People at the insurance company (who have never met Pickles) made this decision.

Pickles is in danger. Make no mistake: this is a life-or-death situation, and this is mental health care in the US today.

I am working furiously with Kirsten to prevent Pickles’s discharge until she is ready and all appropriate aftercare accommodations are in place. She needs a slow, gradual transition with lots of opportunities to feel successful as she meets small goals along the way. And, of course, she needs to be safe, and she needs the people around her to be safe. You can help by sharing Pickles’s story. No parent whose child had acute liver or heart disease would be expected to be the sole caregiver for that child’s medical needs. Why should it be different when a child’s illness exists in her brain?

UPDATE: And it’s all good!

The office of NM Governor Susana Martinez was very responsive to Kirsten’s calls for assistance. At this point, it looks like Medicaid will be picking up where the private insurance left off, and the Children, Youth, and Families Department will be requiring their own approval when the time comes for discharge and aftercare plans. No one is relaxing entirely yet since the RTC has just submitted a new claim to Medicaid and it hasn’t been approved yet, but as soon as all the Ts are crossed and Is dotted, Pickles will again be secure at RTC until any changes, including discharge, are appropriate and safe.

Thank you thank you thank you (and dozens more thank yous) to all who offered support and love. Thank you to those who shared contact information and worked to share this story as widely as possible. Thank you to Governor Martinez, her staff, the staff of Pickles’s RTC, and NM CYFD for putting the safety and well-being of a little girl above dollars. Please continue to share this story. Kirsten and I were just discussing yesterday how differently this could have worked out, had Kirsten not known how to work the system the way she did (and I do hope I was helpful in that part) and had online friends with broad experience with advocacy not offered their advice (We didn’t end up using all the contact info we got, but wow, do I have an impressive list to call upon if and when any of my local friends should need it!). There are other parents out there, parents who don’t have much education, or don’t have much money, or have cultural or language barriers, and so many other issues that prevent them from advocating for their children in the way Kirsten does for Pickles. Kirsten is not cowed by the authority of people who say no they way many people are, and that is not a failing, just a fact of temperament. This could have gone so differently, and Pickles could have been the lead story on the local news, and the first thing a thousand people would have said from in front of their televisions is, “How could her parents have let that happen? What kind of parents are they?”

The next time you hear a story like that, and you hear people judge the parents, please remember Pickles. There are bad parents out there, sure, but there is also illness that parents alone are not equipped to manage on their own, even the best among us. Remember what might have happened here; what very likely would have happened if Kirsten was not a fierce mother with fierce and loving support behind her. Mental health care in the US must change. Pickles and Carter and all the children and adults who need care deserve sensitivity, kindness, and treatment. It doesn’t have to be this hard.

Pediatric Mental Illness on Parade

My friend Olive and her little girl came to visit us. (Her name is not really Olive, but her anonymous-for-the-web name for her daughter is Pickles, so I’m going with a whole relish-tray theme.)

This was kind of a big deal for me because I’ve always sworn I would never meet any of my online friends in real life. No way. I enjoy my online life and I was afraid that, if I met my virtual friends, we might hate each other. It seemed too risky.

But I’m also kind of a sucker, and Olive pretty much twisted my arm (not really), so here she came, Pickles in tow.

Pickles is a little younger than Carter, but they have a great deal in common. They both love dogs and they both have psychosis, for instance. They both enjoy cartoons and both can go from happy to raging (or terrified, or despondent) without warning.

Just two little kids but more, which is why Olive and I met each other online in the first place. In spite of what the media says, the community of parents whose children have serious mental illness is really quite small.

But the kids did great, for the most part. Carter was fascinated by Pickles’s medicine and eager to compare it to his own. It was all so new to him, this opportunity to be around another child whose experience of the world was similar to his. Every time he was alone with me, he talked as fast as he could, dissecting Pickles, telling me all the ways they are similar and all the ways they are different. He’s a surprisingly introspective person when he’s not screaming at people to stop looking at him.

The third day Olive and Pickles were here, I had to pick up Brian from work and everyone wanted to come along with me, so Carter and Pickles piled into the back seat and Spencer rode shotgun. Halfway to our destination, I heard Pickles say, “I don’t want to talk about that!” She was looking out the side window, away from Carter.

Carter launched into a long, impassioned explanation about how he didn’t mean to upset her, but if she would just listen he could make her understand because what he’s saying is very important and if she would just uncover her ears and listen to him he could make it all OK!

As he does. You know how some people see a problem and immediately start throwing money at it? Carter thinks that there is no problem too large to be solved if you just drown it in words.

Pickles refused to uncover her ears or turn and look at Carter, so he redoubled his efforts, increased his volume, and tried to pull one of Pickles’s hands away from her ear. “But I was just trying to tell you…”

She clamped her hands back over her ears, turned to face Carter with her face screwed up tight with fury and said, “I have to take some space and this is my only way to take some space. You have to let me take some space!”

Carter, his own face now growing stormy, responded, “I am not in your bubble!”

And they went, lobbing therapy-speak back and forth across the back seat at each other, trying to find the magic words learned from some doctor or counselor or behavior management specialist that would solve the problem. “You should use your skills to calm down!” “I already used my skills! You use your skills!” “I can’t because you won’t let me take some space!” “I would let you take some space if you would use your skills!”

Finally, Pickles turned back to the window, hands clamped tight over her ears, humming loudly. I could see Carter in the rearview mirror and I could see that he was approaching nuclear meltdown. Face bright red, jaw clenched, he hissed “I am so angry right now!”

Meanwhile, I was in the front seat doing my best drone imitation, speaking in a near monotone, “Everyone is OK. Let’s all take a deep breath. Carter, you look out your window. Pickles, you look the other way, out your own window.”

They weren’t listening to me, which is not surprising since neither of them was listening to anything except the pounding of their own anger.

Finally, we arrived at Brian’s office, and Spencer got in the backseat between Pickles and Carter. “You look out that window,” he said to Pickles, “and you look out that one,” he said to Carter.

And they did.

And all was quiet on the way home.

If you hear me refer to that dark-haired 14-year-old boy who lives in my house as Saint Spencer, you’ll never wonder why.