This piece is WAY too long. I'm working through and over-thinking some of my mixed feelings about ABA and mental health.
One of the people that I spoke to over the past couple of weeks was a behavior specialist. She sat down with me and I explained what has been going on lately. After a little back and forth she suggested that we participate in a 90 day program. Naomi would be followed at school and at home and we would be given feedback and advice. I said “Yes,” but I’m leery.
First of all, I am a believer in ABA. It makes a significant difference in the quality of life for many people and their families. Naomi has been going to an ABA school for years and it has been good, (although more helpful in the beginning than it is now.) I benefited from ABA seminars and trainings. I learned a lot when Naomi was little. I could apply the principles as I saw fit.
Over the years we have had many behavior specialists in our home. The ones that have primarily worked with Naomi have been good. The ones that come to give me advice. Well…. They’ve all been nice people, and I enjoyed their company, but I wouldn’t say any of them were particularly helpful. Naomi has always liked having visitors to the house, so when they came she wasn’t restless and difficult. We weren’t trying to get her to bed, or dealing with a lost toy. In short, the behavior specialists didn’t see the difficult behavior. So instead of showing me how to correct it, they spent a lot of time talking. General principles about ‘putting your foot down’ and ‘being the one in control’ were the overall gist. I felt a little frustrated that I was getting 'why' more than 'how.' I wasn’t getting the specifics I needed on how to best use my 'control' in the most difficult moments without making things worse.
I got along with the behavior specialists, but sometimes felt like I was being lectured. Other times I felt like I wasn’t listened to or at least not understood. For example, I always found myself arguing that the ‘picture schedule’ was bullshit. Since no one acknowledged that my arguments were valid on that topic, I wrote a blog post about it here. It was cathartic, but the behavior specialists never cared to read it. When I explained why certain approaches have backfired or did not work, I always get a response that essentially means – ‘you must be doing it wrong. ‘ It didn’t happen all the time, but often enough that it bugged me.
So when the behavior specialist came the other day, I had a little déjà vu. Here’s some samples of our conversations.
Behavior Specialist: The schedule seems to be a trigger, so you should probably stop doing that.
My response was pretty blunt. “If I take the schedule away she will beat the shit out of me.”
But I was thinking: Are you &^%#ing kidding me? I begged all of you predecessors NOT to force the schedule on us. Now, that we have relented, it has made things worse and Naomi is attached to it in the most OCD way, you want me to just make it disappear?
Behavior Specialist: Well then, put down all the things that you know you are going to do on the schedule and then give her some choices.
I said “There is no time or space for more choices our schedule has way too many things on it as it is.
I was thinking: I just explained that our main problem is that the schedule is full of too many things in one day!
Behavior Specialist: Well, pick a few things and then let her choose which ones are the most important. The other ones don’t get listed on the schedule
I said: Giving Naomi choices between 2 things causes anxiety, because she will want to do both of them and cannot choose just one.
I'm thinking: THIS IS A HUGE TRIGGER! I have tried. I know. I would say it is our main problem and you think it is a solution?
Behavior Specialist: When she starts to get aggressive, just walk out of the room
I'm thinking: Naomi is often upon me before I even realize she is getting aggressive. If I am fortunate enough to see it coming, ‘walking’ is not an option.
I said: I don’t walk away from Naomi, I run. If I am lucky enough to get to another room and hold the door shut, she attacks the dog.
Behavior Specialist: Take the dog with you when you go.
I'm thinking: Yeah, you know that part about having to RUN? Stopping to find the dog and bringing him with me slows me down considerably. I will not make it to another room if I have to take the dog. The dog and I will probably both get hammered. I figured if she couldn’t figure this out, I wasn’t going to explain it to her. I just said “Okay.”
When I told her I bring up Naomi's behavior the next day when I explain why we won’t be doing her activity of choice, the behavior specialist told me ‘Don’t talk about it the next day because it’s over and done with. Sit down and talk to her 5 or 10 minutes later about how she could have made better choices .’
I said: I’ve tried that. But Naomi’s violence comes in waves. Once it has been triggered it comes back much more easily the next time. NOTHING triggers it more easily than reminding her of what she recently did and telling her that it was wrong. You either wait until the next day to talk to her, you let it go altogether or you brace yourself for another meltdown.
To be clear, this woman was nice, knowledgeable and doing the best job she could. The thing I liked best about her was that when I explained why her responses wouldn’t work, she didn’t give me the ‘you must be doing it wrong’ sense. I think she believed me. But like many behavior specialists I have known, she made assumptions and gave advice long before she got the full context. And here’s where my greatest concern with behavior specialists is – They come to quick conclusions and give advice more than they ask questions. My understanding of the qualifying test for a behavior specialist is that it consists of an enormous number of questions to answer in a very short period of time. That’s how they work. They come to the answer quickly and make sure it fits the behavioral model. It may not fit the mental health model. They understand human behavior much better than they understand mental illness.
One of the most significant examples of mental health not squaring with the behavioral model happened a little over a year ago when Ms. Supervisor changed Naomi’s school hours. I explained that sleep deprivation would surely ensue if her hours were to change. We had seen sleep deprivation result in behavior so bad that she was prescribed anti-psychotics. Her response was “She needs to learn to ask for breaks if she’s sleepy.” Thinking about that one still gets me! Yes, I hold grudges!
I told the behavior specialist about Naomi’s uber-attachment to nail polish. Nails have to be done every day. “She may agree to not do them temporarily,” I told her “I really believe she wants to follow through. But when the rubber meets the road the idea of going to bed without having her nails done gives her enormous anxiety. ‘Nails! Nails! Nails!’ She’ll say. She’s not just being a brat. It’s just that the nail polish has a hold over her that she can’t resist.”
“I know it’s hard,” she said “but once you’ve told her ‘no nail polish’ you can’t go back on that.”
“With that level of anxiety she won’t sleep all night,” I said. “And aside from the fact that sleep is essential to her emotional control, I don’t think it will work. Everything I have read about OCD is that you can’t discipline it out of a person.”
“You have to teach her coping skills,” she said.
“What are the coping skills?”
She went on to describe hugging a pillow or stuffed animal. This really didn’t seem like a reasonable answer.
As I told the behavior specialist about other difficulties, it was clear that she thought that maybe Naomi was being a brat. Maybe she is. The thing is I don’t know and neither does she. My maternal instinct says she’s not. I see her trying to fight herself all the time. “I DON’T WANT TO PULL HAIR,” “TOO MUCH NAIL POLISH. NO DOING NAILS.’ “TOO MUCH GRABBING!” “I’M ALL DONE TOO MANY THINGS!” I honestly believe that if she could articulate what she is going through she would say “I understand and I really want to do what you’re asking, but my nervous system is fighting me on this.” I don’t know that Naomi feels like she’s going to die if her nails don’t get polished, but judging her reaction, I wouldn’t be surprised. Forcing her to do so may be like torture to her. Mental illness is not logical. It doesn’t always fit the behavior model. Every day I see Naomi trying to accept changes, trying to work within limitations and she just can’t win over the struggle. She is well aware of where our difficulties are, I really believe she wants to overcome them, but knowing what they are and struggling with them only brings her more anxiety. It doesn't help her get past the problems. We need someone that understands OCD better than they understand typical behavior. We need someone that can help us make transitions with more effective strategies than hugging a pillow.
I’m still going to agree to the 90 day program. Why? Well, that’s all we have access to right now, and it’s clear that we need help. She may give me a few pointers I can use and maybe I’ll be pleasantly surprised by under understanding of mental health. Also, I figure it will be good for the rcounty record if the paper trail shows that I tried. Still, I don’t have the blind faith in the wisdom of a behavior specialist anymore. I’ll still be looking for other avenues of help and support. I just felt the need to write my doubts down and prepare myself for what may end up being more lectures on putting my foot down and being in 'control.'