I start the session off asking Bea about her weekend trip up north to see her son and then talking about the time change; how Kat is adjusting to it, and how hubby’s first day at the new job went. I don’t mention myself or what is going on with me. Because I’m fine. I’m good. I’m miss perfect.
“That’s Kat, and Hubby. What about Alice? How are you?” Bea asks.
I shrug. “I’m good, how are you?” The response is automatic, the kind I’ve been trained to give by my mother since I was a little girl. I don’t even think when I give it; it’s given with a cheerful voice and a bright smile.
Bea looks at me. “I’m good, I had a nice weekend.” I snap back to reality, and I feel like an idiot. We’ve already gone over her weekend, and how she is. Ugh. “What happened with Jaime? Last week you were struggling with that, and we discussed talking to hubby about it, talking to Jaime about it, talking to Carly about it. Did anything happen with it?”
I take a deep breath. “Well. I ended up calling Carly. So….Jaime sent over meeting notes, objectives. I couldn’t believe it. Well, you saw them. And hubby and I discussed it, and he couldn’t believe it either. I had written a letter; to vent really, not to send, that hubby decided he wanted to send to Jaime. I didn’t want to send it because I felt like it was mean. Hubby felt like it was just to the point and blunt. Trust me, it was mean. But I felt like we needed to talk to Jaime,at least, give him the benefit of doubt still. Hubby said he would talk to Jaime, but first he wanted me to call Carly and give her a heads up that he was going to talk to Jaime.”
“What was the letter? I’m curious what you thought was mean, and hubby thought was to the point,” Bea says.
“I have it, and you can read it. But it’s mean.” I pull my iPad out of my bag as I warn her that it is a mean letter. I pull up the letter, and hand it to her.
She reads, and I hide my face. I hate having people read something I’ve written in front of me. Feeling like what I’ve written is mean, well, that makes its even worse, because I never want people to see that side of me.
We really need to talk about ABA, and maybe more importantly, our family’s philosophy in regards to ABA and autism. I’m not sure that I explained it very well in the beginning, and I want to rectify that now. I don’t want to be difficult; one of the reasons I have hesitated to bring this up is that I don’t want to be one of those parents who complains all the time, and whom you dread seeing and working with. This really needs to be addressed, though, as things can not continue on as they are.
We aren’t looking for a cure for autism. We aren’t looking to make our child indistinguishable from her peers. Her brain works differently than most of her peers; we know that, we understand that, and maybe most importantly, we accept that. We celebrate her uniqueness. Autism isn’t a dirty word in our house. What that means to us, is that when there are inappropriate behaviors being demonstrated, we don’t just want to fix or change the behavior. We want to peel back the layers of the onion, and understand why she needs the behavior; what is the function? Why does she need this behavior? What purpose is it serving her? Then we want to give her tools to help her not need that behavior. (This doesn’t mean teaching –or maybe the more appropriate word is training– her to say hi instead of blowing raspberries at people. Maybe she is blowing raspberries because people in her face gives her anxiety, and so we teach her breathing exercises, we teach her to politely request that people back up, we teach her to greet someone. We teach her to think for herself, and discover solutions for herself. There are so many options, not just one that “fixes” the behavior and makes her look like her peers. The option that makes her look like her peers may not be the option that makes K the most comfortable in her own skin.)
It seems to me, that a lot of your behavior plans and task analysis look at the behavior, and are plans to fix that behavior, but aren’t looking at the layers underneath. We care about the emotional implications. I realize that isn’t something you have worked with a lot in the past, but it is a very big part of this program, and it seems to be lacking in your objectives. We care about what our actions and expectations say to K about her. If our expectations are constantly asking her to change, to be something she isn’t, that is saying she isn’t enough. That’s not a message we want to give. And it’s not enough to say it; our actions tell K how we feel on a daily basis. Everyone involved in her life needs to convey the message: “you are worth spending time with, you are enough, you are a joy to be around.”
I realize that not all parents think like we do, or are as involved as we are, however, I am used to getting copies of the meeting notes from the BCBA, and I am used to getting feedback from the data sheets we provide. I’m used to getting any notes sent out from the BCBA; if it pertains to my child, I have a right to that information. I haven’t received much of that from you. I am not sure how you can get to know our family, or our daughter without these things. I realize you have only been with us a few weeks, but I feel like you should be asking questions, and getting to know how things work. I don’t get the feeling that things are really clicking. I get the feeling that you want to be the expert, give the advice, and have us– the parents– blindly follow it. I should have informed you of this earlier, but that’s not how it works in this family; everything is discussed, problem solved and agreed upon together, BCBA, behavior tech and parent. You may be the expert, but I am, and always will be, the expert in my child.
I did get your notes/objectives from the meeting because I asked one of the behavior techs to forward a copy to me. I have to say, I was disappointed. We discussed so much more than what you wrote up. There were, of course, emotional/social components, and the new objectives of writing a task analysis of routines that are chained directions like “go to the bathroom, brush you teeth, put on your pajamas”. The task analysis you wrote up for teaching the ABC’s was lacking; I can honestly find more information by googling “how to teach the alphabet to preschooler”. I could have written up post meeting notes that included much more information than you included in yours; the lack of detail makes me feel that you were not giving your full attention to the meeting, or challenges being discussed.
I was quite upset the other day, when Leslie texted me, asking me what time she should arrive to overlap in session with the new tech. The last I knew, I had informed you of my concerns about bringing Leslie back out, and you had yet to acknowledge those concerns. I was not expecting Leslie to come out until those concerns were at least addressed, and I assumed I would have been informed about the addition of Leslie to the team. This put Leslie and I in an awkward position; myself, having to inform Leslie of my concerns and of the fact I wasn’t aware of her visit, and Leslie, having to handle something that should have been handled by you, when I brought up those concerns. The most astonishing thing is, my main concern was that bringing Leslie in and having her leave again after a short time could have repercussions like last time, and Leslie’s new position on our team is a long term position. This would have been a simple thing to inform me of, and it was a simple solution to my concerns. I realize that my concerns were about my daughter’s emotional responses, and those things don’t seem important to you, or very much on your radar. They are, however, quite important in this program, and in this family.
We like you and you seem to be a competent and smart BCBA. I have confidence that if our program were a standard behavioral program, you would be fantastic at running it. However, our program is very unique; our beliefs about autism are unique and our daughter is unique. Things are done very differently in this program. It can be a lot to understand and handle. We need to have people who are completely on board with our philosophies, and beliefs, or this won’t work. Not everyone is going to be the right fit for our family. If you feel like this isn’t something you can be 100% on board with and open minded to, please inform us of this immediately, so that we can meet with Carly and discuss our options.
Alice and Hubby
It feels like hours that Bea is reading that letter. Finally she finishes. “This isn’t mean. It’s well written, it explains what the issue is very clearly, and it states what you want for your child. I don’t see a problem with it at all. I agree with hubby. The only statement that I might change is where you say ‘blindly follow.’ I might change that to just ‘follow’; that was the only thing that seemed possibly a little harsh to me. I really do agree with hubby. This is an excellent letter. Really. This is excellent.”
I shake my head. “I feel like it’s mean. I don’t know. It doesn’t matter anyway. I talked to Carly. And ended up telling her exactly how I felt. I didn’t mean to, but as I was attempting to give one complaint, to tell it nicely and explain that hubby was planning on talking to Jaime because I wasn’t getting through to him, I felt like she was making excuses….I just got snippy. I was like, ‘you know what? I wrote this letter, it’s not something I intended to send, but it’s not nice, and it’s to Jaime, about everything that is not okay with what is going on with him and his program. And Hubby read it, and he wanted to send it, because he is fed up with it, too, and he is upset that I’m upset. But I convinced him that it’s better to talk about it than to send a mean letter.’ And then I just went down the list in my letter of what the issues are, and explained that mainly, at the meeting it just seemed so obvious that he wasn’t getting the fact that you really need to look deeper at Kat’s program, and not just on a surface behavioral level. And that I was hoping his meeting notes would reflect that he heard and understood the discussion between Carly, and myself and the ABA techs, as we were peeling back the layers, but the notes didn’t reflect that, and I just can not do this anymore, something needs to change. So she said she can talk to Jaime, and the owner of the company, and she may be able to take our case back over in two weeks when the insurance is up for reauthorization. She isn’t really taking cases, her job is different now, so she will have Leslie coming out to do supervision a lot, but I’m okay with that.”
“Whew. So you did speak up. That’s good, that’s great.”
I shake my head. “But not to the person I have the conflict with. And I felt guilty and horrible the whole time. I was trying not to cry. Carly asked me if I was okay, at one point, because even though I’m so glad that this might all work out, and Jaime has to go because it’s not a good fit, I feel so bad, and I had to tell her I feel really awful about this. She told me I should never feel bad about fighting for my kid, and that as a mom she would do the same thing.”
Bea shifts in her chair, swivels a little bit. “You shouldn’t feel bad. I’m glad she told you that. It’s your personality type to feel strongly and be passionate about your beliefs. I can hear that in your letter. You have specific beliefs about how to handle autism, and how that works in your family, and no one is going to change that or mess with that system.”
I’m not sure why, but I feel like she is questioning my belief that for my family, we aren’t looking for a cure for autism, or to make our child indistinguishable from her peers; that’s not our goal, and it’s never been our goal, and it never will be our goal. “Well, I’m not wrong. If we tried to force Kat to be just like her peers, and ignored the layers underneath, and didn’t learn the function of the behavior and deal with that, then her anxiety would be sky high. We would be back where she was when we first came to see you. This is right for my family. I’m not saying it’s right for all families, but it’s right for my family.”
Bea nods. “I agree with you. I think what you are doing is right for her. It’s funny. I have several little ones about her age, and despite the social and emotional struggles she has, I think she is the one I would say is most ready for kindergarten.”
One part of me swells with pride at this; Kat is smart, and we have worked hard to help her be ready. Another part feels rejected, like Bea isn’t seeing the struggles and wants to lash out, saying that she sees Kat an hour and a half a week, and doesn’t see her the rest of the time, there is no way she can make any kind of assessment off that. I choose the part the feels proud, because that feels more reality based, and smile. “Thank you. Kat is so smart. I think some of it is we have worked really hard to get her there, and some of it is she is smart, and some of it is we have just always expected certain things of her, even when things were hard.”
“Like what?” Bea asks.
“Well, once she was walking, and it was apparent she understood what I said, her snacks and plates and cups were all moved to shelves that she can reach. And she helps get them out and set the table. She gets her own snacks, because they are where she can reach them, and she knows if they are in the pink basket they are safe (milk free) for her to eat. We’ve always asked her to put her plate in the sink after eating. She’s always helped put her clothes alway and to pick out her clothes to wear, since she was maybe 2. Obviously putting her toys away. Oh, she is in charge of feeding and watering the dogs and cat. And she helps clean the cat’s litter box.” I’m actually surprised when I’m done listing out the everything. That’s a decent amount of chores for a 4 year old. It’s no wonder she is ready for kindergarten; she’s been working on following directions for chores since she was 2.
“That’s really good stuff. Really good. I didn’t know she did all that,” Bea tells me.
“Yeah, I forget how much we have her help with around the house. She helps sweep and mop, clean windows, and dust, too. Pretty much whatever chores are being done, she has the option to help, play with her toys by herself, or take a rest.”
We chat about homeschool stuff, and Kat a little more. Bea doesn’t bring up preschool or social groups today. I’m thankful. I get so tired of feeling like I’m screwing up by wanting to keep her home. Maybe I am screwing up, maybe I am being selfish and wrong. I’ve thought about it. I’ve tried very hard to keep my feelings of wanting and needing to protect my daughter out of it, and I still come down on the side of traditional school won’t work for her. She will fall behind, she won’t learn. She will be full of anxiety and stressed out all the time, and come home and act out accordingly.
The conversation turns to hubby. “So things are better with hubby? It seems like you were able to talk and really work together and find some support from him in the Jaime issue.” Bea asks.
I shake my head, slowly. I don’t know. Yes, and no. “Well…..they are and they aren’t. He unpacked my bag. Did I tell you that? While we were gone, at my parents, he unpacked my bag.” There’s anger under my words, even I can hear it. Crap.
“He really wants to smooth things over, forget that fight existed, have things back to normal. What did you do?”
“I repacked it,” I say matter of factly; of course, duh.
Bea chuckles. “I like it. I’m glad you repacked it. Does he know? It sends the message that things aren’t fixed, the fight is not just erased and gone.”
“Well, it’s just sitting in my closet, so he might know. I don’t know. But he thinks everything is fine. And that’s the way it needs to be. He wants things on the surface, nice and neat, clean and easy. I never should have told him anything to begin with. He can’t really handle this. So this is better. I just can be perfect wife and mommy for him. And he’s happy.”
Bea sighs, looks at me. She has to be sick of this conversation. “What about Alice? Are you happy? You deserve to be happy, too.”
I think about how to explain it. “Well….if, I just keep things on the surface we can laugh together, and joke around, and be happy. We can like each other. If I go along with things he wants, then we are both happy, because he’s having fun, then so am I. We have fun together, we always have. And when it matters, like this Jaime thing, we stick together, we always have. In public, we always have the others back, we always stick up for each other, and are on each others side. In private, at home, we may disagree about it. Is that so bad? To pretend to not be mad, to pretend to let it go? To be perfect wife, because that’s what he needs, so we can be happy together?”
“Well, noooo…” Bea answers slowly, “There are a lot of couples whom that would be enough for, who would be thrilled to have even that. And, as we’ve said before, we don’t know that hubby can go deeper to have a more authentic relationship. But you won’t know until you try. And can you be happy like this? Without authenticity? How long can you hold it together before you break?”
I put my head down. “I held it together a long time before.”
“Yes. Yes you did. But you know what authentic feels like now. I’m not sure you will settle for less.”
I look up. “Well, I’ll have hubby in a box. The perfect box. I’m very good at splitting things.” I take my hands, and move them apart. I gesture with my right hand, “I’ll keep hubby over here, with perfect wife and he will be happy.” And then I gesture with my left, “Everything else is over here, and I’ll just keep them separate.”
The way I see it, I’m living a reverse life. At home, I have on my mask of Perfect wife. I’m in the box with hubby, and the Facade is firmly in place. Outside of my home, I can be more of the real me. Splitting things like this, living a reverse life is hard to do, but I’m capable. I’ve had lots of practice.
Bea shakes her head. “Speaking as Bea, and not as your therapist, my husband has such a similar personality, I know how hard it is to get through to them. They want everything perfect and nice, and they ignore anything that is not good, unless it’s a huge fire in front of their face. You just have to poke them a little bit from time to time. Ruffle their feathers. Remind them that life isn’t perfect, and that it’s okay. Like you could tell hubby, I repacked my bag. Just to give him a nudge that you are still upset.”
I shake my head. “No way. It’s been too long, and I really should just forget about it.”
“Think about this. Wouldn’t it be nice to be able to talk to Hubby about your brother’s wedding, the same way you talked to him about Jaime? To have the support and caring he gave you for the Jaime problem?” Bea asks me.
I shake me head. The only person I can even imagine talking to about it is Kay, and we aren’t exactly speaking right now. But I know she would react in exactly the right way, and say the right thing. She wouldn’t make me feel guilty, or like I need to protect her, or take care of her feelings, or like I need to protect other people from her. She is safe. I trust her. Hubby….well, I don’t trust him like that anymore. “I….no. I don’t want to talk to hubby about the wedding.”
“Well, there would obviously need to be some other talks first, like telling hubby the who. But then imagine the safety and support you could have.”
She doesn’t know. I’m going to have to tell her. “I don’t…..I can’t…” I put my head back down, and tears falls. “I don’t trust him. I won’t talk to him about this stuff again, not ever, I don’t trust him like that.”
“Ahh.” Bea seems to get it now. “He really hurt you. He took your keys, and unpacked your bag. He was controlling. That was scary.”
“He….everything he knows I’m afraid I am he threw back at me, he said. And now he says he didn’t mean it, but well…how do I know that? How do I know what he means? He said the worst things he could. It doesn’t matter how many times he says he didn’t mean it, I still worry and wonder if he did. He sounded like he did.”
“He said some things that hurt you really bad. Do you want to tell me what he said? What hurt the most? I know the comment about his mom taking better care of Kat was really painful, but I really believe that has more to do with him and how he needs to view his mom, then you. You are a good mom, he knows that,”. Bea says gently.
“He said he doesn’t even know what I do all day, that his mom would be better for Kat than me, that I’m crazy, that I’m mean, and selfish, that he only puts up with all of this because he knows one day I’ll be normal again, that I’ve been a terrible wife, he’s been having to do everything around here…….” I trail off, crying.
Bea talks about everything he has said, how it’s a guy way to attack, how saying that I’m not doing my “job” as a wife and mother is very much something men seem to do to stay at home moms when they get angry. She tells me that calling people crazy is an overused word.
I sniffle. “He didn’t really say crazy. He said I belonged in the loony bin.” At the time I was hiding between the wall and our bed, partway under my nightstand. But I felt safe like that. He had taken my keys, I was extremely triggered, and I needed to hide.
“Okay. So that means you were doing something he didn’t understand and he reacted very poorly.” Bea can reframe it all she wants. My husband thinks I’m crazy. And that’s the thing. Anything that doesn’t have to do with this perfect part of our life, he doesn’t understand, he reacts badly to unless we are in Bea’s office and he is being coached on how to react, and behaves like I’m crazy. It’s not worth it. He doesn’t understand me, and he just never will.
“I can’t do it. I can’t. I have friends to talk to. I can keep hubby in a nice little box, and everything else outside the box. It will be fine. It’s good.” I sniffle again, wipe my face with my hands, and look up.
“It doesn’t work like that. Life eventually collides. Things come out of the box. You can’t stuff it all down. It eventually blows up. The box opens.” Bea pushes a little.
“Well, that’s why I have lots of duct tape. And it comes in pretty colors now, for my pretty box.” I turn to acting like this is all a big joke, because I can’t handle it any longer. My marriage is falling apart, I might lose my husband. I HAVE to be perfect wife.
“Yes, duct tape does come in pretty colors now days,” Bea agrees with me. She’s going to let me get away with it, and change the subject, I hope.
We circle back around to the Jaime problem. I still am having a lot of guilt over complaining about him. “I really hope I didn’t screw up.”
“I don’t think you did. I think you needed to talk to Carly or Jaime and it’s good you did, you need to do what’s best for Kat.” Bea takes a sip of tea.
“I hope so. I tried really hard to make it work. Maybe harder than I would have normally.”
“Well…the whole crush thing. I really needed to know that the crush thing and my feelings about Jamie because of the crush weren’t affecting my decision to complain and ask for a new BCBA. If it weren’t for being afraid I was being affected by that, I would have asked for a change earlier.”
Bea smiles at me. “I’m very sure that the crush part didn’t play into this at all. You really were able to separate that out. Jaime wasn’t a good fit for your family. He maybe has some growing to do in the emotional development area, or maybe he just doesn’t have the capacity to work in that area.”
“Hmmm. Yeah. Maybe not. I don’t know. I just know Carly has an LMSW, so she has a therapeutic background. Leslie has a degree child psychology, but I don’t think she practiced. She got her bachelor’s in child psych, and then switched to a BCBA program. There are two other BCBA’s that have degrees with a therapy background– they just aren’t taking new cases right now. But I think that’s what we need, Jaime doesn’t have a degree in any of that.” I explain.
“That makes a difference. A huge difference.” Bea agrees.
We talk a little more, and then I pack up, and get ready to leave. I have yoga to get to today.
“I’ll see you Thursday. I’ll be interested to find out what happens,” Bea says.
I smile. “Yeah, me too. Carly is supposed to let me know today what they decide.”
We say our goodbyes, and wish each other a good day. I head out the door, and off to yoga. Its another place I don’t need my mask. How did it become that I need my facade of Miss Perfect at home, and can be more of my authentic self in public? I’m living a strange reverse life split off kind of life.