WAITING STILL

Yes, we followed up like you said with the mental health agency, and I have to say, we were treated poorly. Yes. They gave us an appointment, and then they canceled it after we were already there. Yes, in person! They gave us another one, and then when we got there and checked in, they canceled it again. They made yet a third appointment, and then they called the day before and said, hey sorry, the person you were assigned to just quit and we don’t have anybody who can take your daughter’s case so you have to go back to the waiting list.

Psychotic breaks? I don’t know. That’s the problem! She’s always talked to herself, so it’s hard to know if she thinks she’s talking to someone or just talking to herself. We’ll be sitting around the table and she will all of a sudden start talking or mumbling to herself and put a hand up to hide her face or just wave a hand around. One doctor says it could be a tic, like from her autism. I don’t know. How can I know? She is secretive. That’s one of the things the counseling was supposed to be for, so she could open up. Right?

The autism center you told us to go to also has a waitlist for therapists, and we have never gotten to the top of it. The children’s hospital has a waitlist, and we got in for medical care but not for the counseling or therapies. Her case manager from the Developmental Disabilities Administration was supposed to help us get a counselor gosh six months ago at least. They said to wait three or four months before calling, because they’re so busy, so I did. And then I called for the last couple months, begging even, and the guy whose number they gave us never answered a single time. No one did. Finally last week some lady called and said she’s our new case manager. She says that guy left three months ago but no one ever told us or sent a letter or anything and here I was writing and calling for nothing. And she’s new to the case as she says and so we’ll have to wait for her to figure it out. Everyone tells us they are underfunded, but what can I do about it? Besides never get care for my daughter, so they have one less thing on their plate. I guess that’s my contribution.

The doctor, her regular doctor, also agreed that she should get therapy, and individual counseling, urgently, and he told us to call your hospital, but I don’t know if he meant you or someone else. Did he mean you? I am telling you all this in hopes you can help us. Oh, you only do the medical management? Okay. And the ones in the other clinic, they have a years-long waitlist? Yeah, sounds familiar. Okay. Well, what can we do?

Yes, I did hear about the other mental health place in the county, but they said we have to wait there, too. Everyone is wanting counseling during COVID, they told me. But it seems like they don’t decide who needs it most. I don’t know how people get in. I really don’t. It can’t be first come-first served or we would not be waiting anymore, though, right? All I hear is, you’ll have to wait. Wait for a call. Leave another message. Wait for a call back. Fill out these papers. Then wait for a call. Then someone looked at them but then quit, or lost them, or never got them. We’ll send you more paperwork, they tell me, and you send it to your insurance, and then: You’ll have to wait. Wait. Wait.

You want to give me a number to call and complain? Well, that’s nice but I doubt they would do anything but put me on hold. Then I wait for an hour, then they say they are underfunded. So what can I do but wait? If a bunch of people need help and they don’t have a bunch of people to give help, we get this situation. It’s only logical. There isn’t enough to reach us, so we wait. We wait even for years without the services everyone keeps telling us she needs.

Did you know, did I ever tell you, they told me that the very best thing for my daughter would be this ABA thing? Wait – it’s here is my notes. Yes, Applied Behavior Analysis for kids with autism. Yeah. Two years ago. No, that was three years ago now. We were so happy and excited. Finally, something to help her! But you know what, we’ve been waiting so long now, that the new case worker told us our daughter might “age out” and be be too old to get it. They want to focus on the younger kids who can get more socialized, or have a better chance, it’s some kind of outcome-based or evidence-based – I don’t know what. I can’t really follow my notes – they all blend together into a big pile of closed doors. Like trying to win the lottery and someone tell you there is a system, but there’s not. It’s random.

Yeah, I can write the ombudsman guy’s number down if you want me to, but I really don’t know if I will feel up to calling, to tell you the truth. You get pregnant, and it’s the happiest moment of your life. And it’s your flesh and blood, and then she is born and she is perfect and lovely and healthy. I don’t know what happened to make her like this – to make her not be like other people, and need all these specialists who don’t have time to help her. You have no idea what a sick stomach I get, what trembling with hope and fear all mingled – every time I am asked to call one more person, one more agency – I can’t help myself from thinking maybe this call will bring my daughter the help she needs! And never being told no, but simply wait. Maybe someone else. Maybe later. Maybe somewhere else. Call another number. Wait.

Sometimes I just wish I didn’t even know about the help if we are destined not to get it. You know? Just to have told us, years ago: This is how it is. Nothing will change, and nothing will get better, and your child will grow up and continue to suffer – never be able to enjoy human company, or even her own company, and no one will ever reach her and help her emerge. And you won’t even know if she is crazy, or needs pills, because she cannot get well enough to tell you, and no one will ever, ever help her. Not really. You see what I am saying? Never to learn at school. Never to marry. Never to work. Never to be safe or able to protect herself when I am gone. To spend her life suffering, and for me to spend my life suffering with her, in agony and hope and wondering how others got services and what is wrong with me that I cannot get her in. I try to bow to our fate, but in my heart of hearts, I wish I never knew about any of this therapy if she is destined to never get help. The outcome would be just the same, but we wouldn’t be waiting still.