This is long. Please read it. This is a story of The System and how it fails kids. More than that, it’s a story of how people within The System are complicit in this failure. All year I’ve been saying it feels like I’m living a British sitcom because this stuff is just too crazy to all happen to one person at one time. Everything I’ve written is true. I have permission from my daughter to share it, but I want to do so anonymously. Please share this far and wide. I want the world to know how stupidly difficult it is to simply live when your brain is trying to kill you.
My daughter is 15 and has been struggling with severe depression and anxiety for the past year – well, for longer than that, but with suicide attempts and hospitalizations in this year.
None of this is or has been secret, but it’s hard to talk about, to make oneself vulnerable. Mental illness is difficult enough to talk about without also feeling like a failure as a mother (regardless of whether that is logical or not). I have learned this year, though, that all of this is a lot more common than I ever thought.
I think the worst thing a parent can face is the idea that the child they created doesn’t wish to have been created at all. The scariest thing I live with is the idea that I might wake up one morning to find her body.
I first learned of the suicidal ideation (SI) last November. Immediately I went to her school for help because not long before we had had a meeting to support her anxieties and I was told they could help in these cases. They did nothing for a full month, despite me calling weekly to check in.
She eventually began receiving therapy at a place called Nueva Vista (NV), but not until the end of January. Her first psychiatrist appointment was not until nearly a month later and she wound up not making it because of her first hospitalization. The doctors in the hospital started her on meds, though. I could not get another appointment with the NV psychiatrist for almost another month and she wound up missing that one, too, for the same reason. At this point I demanded that they see her sooner and they made it happen.
Before, I never really understood the need to pull a child out of school for a doctor’s appointment, but now she’s been pulled out on a regular basis. Sigh.
She was hospitalized once more in April, this time due to a reaction to a new medication they had tried.
A few weeks later we were told that NV provides services in sets of 13 weeks. She was at the end of her first one, and they were applying for a second, but that she would likely not receive a third. I was a little upset because we hadn’t been made aware of any of this at the beginning of our time there. But they promised us a number of things:
1. That they would prepare her for the end of services.
2. That they would help us find services to transfer into.
3. Worst case scenario, they could end services, we could wait three weeks and reapply.
In May we had an IEP finalized for her to help her with this at school. For those who don’t know (lucky), an IEP is a legal document for special education written to provide services, support, and accommodations for a disability. Her IEP stated, among other things, that she would get a therapist at school. The school wanted to write in 730 minutes per year, but my advocate (a very close friend who is a special ed teacher) would not settle for that, knowing that it wasn’t specific enough. Schools are notorious for not writing IEP’s properly and not following them when they do. There is a whole branch of law devoted to suing schools who do not provide accommodations to their students. Anyhow, my friend insisted that my daughter’s IEP state the therapy be provided at least every other week. This turns out to have been a necessary thing, because they did not actually hook her up with a therapist for 3 months.
And then that first therapist? She told my daughter, “If you cry all the time, how do you expect to have friends?”
Other fun things her teachers, school staff, or even her IEP case carrier have said to her, KNOWING her IEP is for depression/anxiety:
-You look too sad all the time. Why don’t you look happier?
-You made me feel like I did something wrong.
-Well, if you don’t talk to me, how do you expect me to help you? (This one in the middle of a panic attack.)
To jump ahead for a moment, because it will just be easier to get all the IEP stuff out of the way, I requested an IEP meeting at the end of August to revise the IEP and, while they held the initial IEP (and I refused to sign it because it wasn’t complete yet), they have STILL not finished it.
During May and June I was dealing with my son’s (12 yo) extreme anxiety. He had entirely lost the ability to participate in school, partly due to a new curriculum, but, I think, largely out of the anxiety he felt over his sister’s health. In trying to find him therapy of his own, he was given an eval at a place called Motiva, but they felt he was too severe for their services and they referred him to NV. THAT was a whole damn mess. They didn’t want him and they gave me a whole host of excuses:
1. He can’t be seen there until autism isn’t his first diagnosis (yeah, that will never happen).
2. He can’t be seen there without a diagnosis (first of all, the referral from Motiva listed a diagnosis, secondly, my daughter didn’t have a diagnosis until they gave her one AFTER she was being seen there).
3. Why couldn’t Motiva just see him, anyway? (Because they don’t do family/group therapy or have access to a psychiatrist)
Eventually, Motiva convinced them to take him, but I don’t feel like their heart is in it. I really don’t. He hasn’t been referred to the psych, and they are already talking about ending his services at the 13 week mark despite the fact that it took them 8 weeks just to get him to talk to them at all.
NV is considered a medium-high severity mental health clinic. I don’t see how a child being hospitalized three times in three months isn’t considered severe. I don’t see how a child being unwilling to consider talking to a therapist at all for 8 weeks isn’t considered severe.
And yet, one day towards the end of summer, my daughter’s therapist told her she had one visit left. I had assumed that they would TRY to get her the third set of sessions, but they didn’t even TRY. They also had not:
1. Prepared her for the end of services.
2. Helped us to find care to transition into.
I demanded to speak with the director of the place. This was a terrible idea. The director, Bill Simpson, is a terrible human being. You would think that a director of a mental health clinic would understand how to speak to people, particularly those in crisis. You would be wrong.
During this conversation, he told me that the reason they could not apply for a third set of sessions is because the county would never approve such a thing unless the child had been hospitalized in the previous two weeks. I mean. That sounds like a thing that might be true, but it also sounds like a thing that a doctor could potentially make a case for more care for a child in a particularly special place (i.e. one who had been hospitalized three times in the past year, and who was not stable on her meds even after more than six months of trying to figure out the right meds for her). And yet he told me (and he repeated it several times), “absolutely I would refuse to help your child.” He claimed that if he even submitted one request for a third set of weeks without the right criteria, the county would refuse to approve any requests ever. That? I have a hard time believing. And even if it were 100% true, I am certain he could have found a kinder way to convey that information.
When I tried to convey the promises I had been made by the staff 13 weeks ago, he brushed me off, saying that he couldn’t believe everything everyone says they are told. It felt a little gaslighty.
He also told me there is no such thing as long-term therapy. Did I already mention gaslighting? Cause that statement right there is the king of crazy.
I am not even kidding you when, at a later date, I asked how to complain about the way he treated me and I was directed to their in-house comment cards instead of the proper county forms that the office doesn’t have access to. I’d love to believe that was a simple mistake.
Every time I try to discuss these things with the staff in the office, they nod at me and say, “I’m sorry you felt that way.” But it is so clearly empty. They don’t actually care, or perhaps they do, but cannot act in any way helpful because of the way the director runs the place. I don’t know. In the end it’s irrelevant because it is simply not helpful. I don’t feel heard and when I try to explain that they are able to say, “Well, I apologized. What more do you want?” It is a very crafty way to dismiss a person.
I am getting quite good at spotting this sort of manipulation, though, and I refuse to play along. My tactics tend to be reminding them what they said two minutes ago, comparing that with the opposite thing they are telling me now, listing all the conflicting things they have told me during the conversation, and listing all the evidence I have from previous experiences. I am never loud, I am never rude, I never curse or insult. I simply state truths. I am always treated as hostile.
We tried to find a new therapist for her. We spoke with a place called YES through San Ysidro Health Center and the woman who did the intake was so kind. She told us that they had plenty of kids who’d been patients there for years and that I should come in and talk with her and she’d take care of my daughter. It felt so good to be heard, and to hear the promise that someone would help us.
They did not help us. They contacted NV who told them that my daughter had “met all her goals” and so they were not able to serve her at YES either. They said they could refer to the general San Ysidro Health Center, but I know (because that is the clinic where my doctor is) that their therapy is not traditional therapy. They only offer 30 minute sessions and most of the work is done at home, alone. That is not nearly the kind of care my kid needs right now.
So around this time, my daughter’s psychiatrist was still adjusting her meds so they could not fully close out her case at NV. She continued meeting with her therapist, but just for 20 minute check-ins instead of the full appointment. She had been on Lexapro since April and it was working well, but not well enough. So we tried Wellbutrin in August. It was a kind of a gamble, as anyone experienced with Wellbutrin knows, but it seemed to be a miracle drug for my kid. She was almost normal for the first time in more than a year! But that only lasted two months. The psych had tried raising it, and then raising it once more.
We saw the doctor one last time the week after they raised it a second time. Here is where things get really upsetting. My daughter had never been stable on meds. She is proving extremely difficult to treat. The longest period of stability were those first two months on Wellbutrin. The doctor’s nurse had found us a new psychiatrist, but the waiting list to see them was three months long. I kept trying to explain how the math doesn’t add up: three months without psychiatry for a kid who’s never been stable more than two months is not good math. Further, we kept telling the doctor, the case manager, the nurse, and the therapist that her SI was increasing and that she was feeling worse and worse. The therapist kept responding by saying, “Yes, but you have coping skills now!” They would not listen when my daughter would try to explain that coping skills can only do so much when your brain is trying to kill you.
The very day she had her last appointment with the psychiatrist, I had to take her in to the ESU. The Emergency Screening Unit is a pace you can take a kid in crisis and have them screened 24 hours a day by a nurse. This is one way to be admitted to a mental health hospital unit, and my daughter had been in the ESU twice already so we were familiar with the process. They kept her overnight, but then they released her, stating that she should continue the services she already had. When I tried to explain that she didn’t really have services, she only had one exit session left, they looked at me blankly and either told me that NV would help her find services (they wouldn’t and didn’t – not for therapy, anyway) or they just repeated the last thing they said before I confused them with things that are happening to us. I mean, believe me, I am also confused. But not helping is, it turns out, not helping.
Luckily (?) because my kid had been officially suicidal again (it’s not real unless a doctor outside of NV had been told?) they were able to extend her therapy for the third set of 13 weeks.
But not the psychiatry. Honestly, I don’t know why.
JUST before we found this out, though, my daughter flipped out one day and had to be taken in again.
It was a good day. She’d had a good day, and a good evening, and she seemed fine in the night, too. I was tired and trying to talk her into going to bed. She cheerfully, and entirely unsleepily told me she would. And then I heard music. And then she was getting up and going into the bathroom. I knew she wasn’t going to bed, but I had no idea she was in her room self-harming and trying to commit suicide. (For the record, all the medication and sharp things are locked up.) I was trying to just let her be a kid, but finally something in me took over and forced her to answer me as to what she was doing. And she fell apart and started crying. So I knew I had to take her in, but she told me, “What if my brain makes me run away from you outside?” and I knew that she was telling me she didn’t feel safe enough for me to drive her myself.
Do you know what happens if you cannot drive your own kid to the ESU? You call the police and they take her away in handcuffs. It’s traumatizing for everyone involved. Luckily, we DID know that is what would happen so we weren’t blindsided by it. But it was still awful.
I followed them to the ESU and it turned out to be a very, very late night. I wound up falling asleep on a couch there and they woke me at 3am to talk with the doctor about admitting her. I believed she would be hospitalized. I didn’t expect what actually did happen, though.
There is a place at the same facility that ESU is at. It’s called Intensive Respite Program (IPR) and it’s not quite a hospital in that the kids there have more freedom. They can have some belongings, they can have visitors at any time, they can even leave for awhile. We got to have her home with us for Thanksgiving, which was wonderful. It is very small – three kids max and each get their own room. They spend all day doing work from therapy to DBT to sensory experiences (they have a whole room devoted to sensory stuff). It’s really a beautiful program.
But my favorite part is the people. The director, Hillary, is amazing. The therapist there is, too. They have reacted appropriately to our story. That is to say that they are appalled. They have made the decision to keep my daughter there until her services on the outside are in place (about another week). They have given me the number to a special ed lawyer to help me prepare to talk to the school. They are coming with us to the school. They have already met with us and our wrap team (a program called Families Forward). I am so grateful to them.
I don’t know where this will lead. Maybe we will get dumped again. I mean, why not?
But I don’t think so. They’ve already shown us they are with us.
But here’s the thing. Repeatedly I have had to check on people, to make sure they are doing their jobs, to ask them to do their jobs. It’s ridiculous. I’m a single mom. I’m quite poor right now. I’m a full time student. I have TWO kids with special needs. I have no family support. I have enough to do without doing the work other people are paid to do.
I have been praised multiple times by various sources (some genuine and some probably less so) for my advocacy for my children. But that only goes so far. When you face one brick wall after another there’s not a lot you can do.
I don’t know if this happened (is happening) to us because we are poor, or because this is mental illness we are dealing with (would a physical illness get the same treatment? to the same degree?), or if it’s just the way things are for everyone, but it’s not acceptable. We MUST stand up for healthcare, for mental health, for children. This is just not okay. It nearly broke me, and may still do so. Please. Someone. Fix the system.