Life

Lindsay Clancy is on trial for strangling her three children, but her lawyers are putting the mental health system on trail. Clancy had three psychiatrists prescribing medicine at the same time. She had twenty prescriptions simultaneously. One of the prescribers had never had a postpartum psychosis client. Another did not know Clancy had been diagnosed with bipolar disorder. All the prescribers could have looked at Clancy’s records and they didn’t.

Mere mortals are unable to challenge the mental health system. Clancy is an experienced nurse and she kept incredible records of her own treatment — qualitative and quantitative. Her records are more thorough than the doctors’, which is why she can challenge institutional mental health providers.

Husbands, take notice. Every trial about postpartum psychosis has a spouse who was oblivious to how serious his wife’s condition was, and he left the mother alone with the kids. Andrea Yates’s husband left her alone with the five kids for an hour every morning even though her psychiatrist said to never leave her alone with them. Clancy’s ex-husband (he’s ex now that the kids are dead) said he had never heard the word psychosis before she killed the kids. But Lindsay was googling questions about psychosis long before the day of the killings. He thought the mental health issues were hers to handle. Meanwhile he was taking control of other things: he decided that if Lindsay was not going back to work, he would fire the nanny.

I noticed this right away because I had postpartum psychosis. It happened after my second kid. The first had already been diagnosed with autism, and at three years old he was in early intervention 40 hours a week. My second son was born with a major facial deformity: hemifacial microsomia. We had a team of sixteen doctors to address the problem. I was so scared I wouldn’t bond with the second son that I never let go of him. Held him all day.

I was also working. Nino was laid off, and I was supporting us by writing. I wrote a column right before I received the epidural. But months later I couldn’t write anymore, so I was submitting articles that had already been published. I knew I would get found out eventually.

Because we were already in early intervention, we had a social worker helping me and Nino parent. A week before my psychotic episode, Nino and I were sitting across from the social worker in our living room. I stood up to try to get the baby to stop crying. And while I was bouncing I said, “I want to just slam the baby’s head into the wall.”

The social worker stood up and said we need someone else to support our family.

I remember feeling abandoned. But only for a second. Because the baby was still crying.

Nino and I were together most of the time. He managed the older son in therapy, and I went there, holding the baby, not wanting to miss talking with the therapist or time to bond with the baby. We were like a parade.

At night, Nino put the older one to bed, then he sat in the kitchen, because we were in NYC in a 500-square-foot apartment and the living room became the bedroom at night. I was holding the baby and doing the dishes, slowly, with one hand. And I picked up a knife and pushed it into my head. I remember it not getting in. Like, my skull was too strong. So I pushed harder. Slamming the knife like I could make headway.

Nino took the baby from my arms. He called 911. I screamed that he couldn’t take the baby. So he told me to put the knife down and sit in the chair and he’d give me the baby. Then the ambulance came.

He stayed with the older kid. I went to the hospital. In the ER I said I wouldn’t leave the baby.

They told me it was okay to leave the baby to go to the mental ward. “The baby needs you to be safe and healthy,” they told me.

I told them I won’t bond with the baby if we separate. “Look at his face,” I said. “It’s a mess. I am scared he won’t feel loved.”

One nurse stayed with me. Then a social worker. People had conferences. I remember feeling like I hadn’t slept as well as I was sleeping in the ER, under constant surveillance and ER chatter all night long.

People told me I can’t go to the mental ward with a baby. So I said I’m not going. People tried to explain how serious it was. I tried to explain how messed up his face was.

Finally the doctors agreed to let me stay in the ER. They were not allowed to release me when I was a danger to the child, but they wouldn’t be violating the law if they let me stay in the ER. I had a bed, and a social worker, for three days. It was support I could not get when I had two kids and a husband and 40 hours of therapists all over NYC.

The hospital called Nino and told him I couldn’t be alone with either kid. I remember thinking that sounded crazy. We can’t do that.

But we did it. Nino took one kid to all his therapy, and I stayed at home with the baby and a nanny. The nanny was $75 an hour because we had to use an agency — we needed one on no notice — and we needed someone who was okay being in charge of not letting me use a knife again. Or anything else.

It took a community, and both our 401Ks, to care for two special needs kids without letting me be alone with either one of them. I used to think we were so irresponsible for cashing out the 401Ks. So irresponsible for neither of us working. Now I’ve seen what happens when a spouse continues going to work in the face of postpartum psychosis. It’s a full-time job to allow a mother to keep bonding with the baby and keep parenting the other kid while still maintaining awareness that she could be dangerous.

I want to tell you I was annoyed by the surveillance. But it was so, so scary how quickly I put the knife in my head. It was so, so scary that I could have been separated from my kids. I just wanted to feel like that wouldn’t happen again.

As years passed, foggy memories made me wonder if the psychosis really came on that fast. How could I be caring for the baby one second and putting a knife in my head the next?

Then I was in the emergency room with Z for his traumatic brain injury. His headaches were so bad he was vomiting for the second day straight. They gave him an IV of anti-nausea medicine and I sat by his bed holding his hand.

All of a sudden he told me he needs to rip out the IV. He said he needs to get out of his skin. He scratched at his body. He was yelling: “I need to get out.”

I said, “You’re okay. The medicine will work quickly. It will get better.”

He said, “Get away from me or I’ll kill you. I want to kill everyone.”

I opened the door. Said to the first nurse I saw, “My son is trying to take out his IV and he is telling me he wants to kill me.”

Ten nurses and doctors were in the room immediately. They were holding him down. He was screaming, “I need to tear off my skin. Let go. I’ll kill all of you.”

I was standing in the doorway saying things like, “He’s a good boy. He practices cello six hours a day. He never breaks rules. He’s such a nice boy.”

No one was listening to me. But five minutes later they told me and Zehavi that psychosis is a known side effect of the medicine he was taking. Akathisia. That’s the word they used.

I didn’t realize it was psychosis until I was listening to commentary on the Lindsay Clancy trial. I felt a little like her husband: I did not know Z had psychosis even though I was standing right there.

I am so lucky I had the doctors in NYC who kept me in the ER with my baby. Lindsay was upset being away from her kids. I would never have taken medication because I would have had to stop breastfeeding. But Lindsay wanted to get better so much that she took the medicine.

Pay attention. This trial affects you. You need to understand psychosis so you know it when you see it. And pay attention to who is going online to criticize Clancy. They are mental health providers who don’t want to believe they’re in a corrupt, poorly regulated industry. But they are.

Lindsay Clancy is going through hell in this trial. But she’ll save so many women from going through hell themselves.

The post The mental health system is on trial with Lindsay Clancy appeared first on Penelope Trunk Careers Blog.

Parents think an evaluation is a moment of truth: you pay an expert, the expert gives you answers. That’s not what happens. Most evaluations are designed to tell you as little as possible. Here’s how it works:

1. When a school tests your kid, that’s not really testing. Even the most high-functioning autistic kid is very, very expensive for a school district, because that kid has the right to so many extra services. Schools don’t like to spend money on one kid. So schools do the bare minimum: test for a narrow range of issues and default to “your kid is fine” unless the kid is disrupting the classroom.

2. Schools don’t have to help your kid make progress. Schools have to make a reasonable effort to help your kid make progress. So schools tell you “we love your kid” and “your kid is doing great” and anything else they can say so you don’t sue. There are about ten schools in the US that make a reasonable effort. That’s why when parents sue a school for not meeting the standard, the school loses.

3. Even private evaluators don’t want to tell you the truth. It’s too much work. A private evaluation is more thorough than a school evaluation, but evaluators still won’t tell you everything, because you’ll argue. If they tell you your kid has gait problems and you’ve never noticed, they don’t want to fight with you about how gait affects school success. If your kid has pragmatic language issues, they don’t want to spend an hour teaching you what pragmatics are and why ignoring the problem means your kid can’t get help from teachers.

4. An evaluation without parent support does nothing for your kid. Research shows interventions don’t help children unless they come with support for the parents. But most evaluators hand you a report and disappear, because writing a report is 1000 times easier and more profitable than supporting a family. So why am I telling you to get your kid an evaluation anyway? Because the evaluation was never for the school, and it’s not even really for your kid. It’s for you, the parent.

5. A private evaluation is how you manage the school. The school doesn’t work for you, so you need someone who does. You cannot see your own kid’s learning profile intuitively. A kid with dyslexia has ADHD. A kid with poor working memory has gait and vestibular issues that affect attention. It’s all interwoven, which is exactly what the school doesn’t want you to know, because the costs add up fast. Your kid has a right to those services, but you can’t advocate for a kid you don’t understand.

6. The IEP preserves your kid’s rights — and teaches your kid to use them. You might think your kid doesn’t need an IEP. Consider that 20% of kids in the Ivy League got extra time on their SATs. That’s because smart parents of smart kids advocate for their kids effectively in school, and it starts with the IEP. It’s also where your kid learns self-advocacy: kids who understand they’re autistic at an early age do better in college because they understand how to manage their environment. In grade school, you model advocacy. By high school, your kid practices on their own.

7. The stakes are too high to skip this. Autistic kids are six times more likely to attempt suicide than neurotypical kids. The best protection is using the IEP to remove structural stigma at school — and you can’t remove what you haven’t identified. That learning process starts with the evaluation.

Bottom line: you don’t get an evaluation to find out if your kid is autistic. You get an evaluation so you can get an IEP, understand your kid, and model self-advocacy in a world full of structural stigma. Also, recognize that kids today are much more accepting of autism than your generation, so your fear of labels might actually be part of the stigmatization you’re trying to shield your kid from.

But remember rules 3 and 4: an evaluation is only as good as the evaluator, and an evaluation without ongoing parent support leaves you hanging.

So I’m having a live conversation with my favorite evaluator, Megan Cawlfield. I’ve worked with families all over the US, and every time a family needs an evaluation, I bring in Megan. That picture up top is Megan mid-evaluation, teaching a parent how about their kid’s movement. Megan and I will talk about how to get an evaluation so strong that it helps everyone in your family, and how to turn that evaluation into an IEP that works.

If you’re considering an evaluation or an IEP — or the school told you your kid is fine and you don’t believe it — join us Friday at 10am Eastern. It’s free if you’re a paid subscriber. Bring your questions. This is the conversation the school will never have with you.

The post Most autism evaluations are useless. Get one for your kid anyway. appeared first on Penelope Trunk Careers Blog.