I’m just a kid pretending to be a grown up…….

Today is my daughters IEP meeting. Hubby has to work, and I feel like he isn’t really interested in  helping anyway– although he will be the first to point out all the things he does not like.  I have our BCBA going with us, and she is smart, well spoken, confident and strong. I feel very supported by her, and Bea is waiting to hear afterwards how it went, so I feel Bea’s support, too. The thing is, this is a big deal, and I’m feeling like a child playing at being a grown up. Keep your fingers crossed for me and Kat today, please? Because it is Kat’s life, I’ll ask for and take all the support I can get. 

Random therapy catch up

So, Thursday’s session turned into a catch up session. It was one of those, sorta random, bits and pieces, current life happenings, housekeeping type sessions. I usually end up feeling like I “wasted” a session, or didn’t go very deep, although fellow blogger, Ellen, pointed out to me that I really wasn’t wasting a session during these times at all. And I can see her point now.

I’ve thought a lot about why these sessions happen like they do, and why they feel a waste to me. I think there are multiple layers as to what, exactly happens. I know that I usually have something BIG I have almost decided to talk about, but am feeling unsure about, and am really unsure how to bring up. They also tend to happen when a lot is going on in my life, and I am struggling to hold it together, and stay on the surface, but trauma stuff is trying really hard to break down the door I’ve locked it behind. And, they tend to happen when I have avoided discussing much more than Kat. So, that’s what I have thus far…, I take you back to last Thursday.

Bea greets me, and I say hello, walking over to the sofa and setting my things down.

I had planned on talking about my aunt, but when I get to therapy and get situated on Bea’s sofa, I just can’t. The words don’t come.

“No Hagrid today?” She notes, looking at me curiously.

I sigh. “Yeah, no Hagrid. I feel almost naked without him, I’m so used to taking him everywhere. But I was running late and knew I couldn’t walk him before our session, and I have to get home afterwards for hubby to be able to leave for work, so he wouldn’t get a walk after, either. And he is fine without his walk, unless he thinks he is getting it. Then he is the most stubborn dog in the world. So I figured everyone would be happier if I left him at home.”

Bea takes a drink of her tea, twists the string from the tea bag in her fingers. “Makes sense to me.”

“Kat will be happy when she gets up and he is home. She is always begging me to leave him at home for her to take care of him.”

“She is really funny with him. I have this should take it home to read with Kat..let me go find it, about a dachshund, named Pretzel, it might be by the woman who created Curious George. ”

She ducks out and comes back a second later, book in hand. I flip through it. It’s really cute. “You should loan this to her, she would probably like it more coming from you,” I suggest.

“Okay. I’ll put it up for tomorrow.”

Kat knows I see a therapist. She doesn’t know that she and I share Bea. I suggested to her once that maybe I should see Bea, and it upset her, so I haven’t gone there yet. Maybe I won’t. Maybe that doesn’t matter, I’m not sure. For the moment, it doesn’t.

“So, we had the school meeting yesterday.” I look down at my fingers, and really wish I had Hagrid to hold on to right now.

“How did it go?”

“Well……it went good. Carrie thought it went good, and she has been to dozens of these things, so that’s good. And we got some things figured out. But they kind of blew us off about setting a date for a second meeting.”

Bea’s smile falls. “That’s frustrating. Schools are so irritating to work with at times. Did they seem willing to work with you?”

“Yes and no. It seemed like they would on some things. Carrie really ran the meeting for us. It’s kind of strange, there are so many rules, you know, we had to just hand the meeting over to her, like verbally, once we were all seated.” Carrie is our BCBA. “Her assistant was there, too, who is also a BCBA and worked as a BCBA at a school for several years before joining the company that works with Kat. So that was really good.”

“We have BCBA’s in schools in [our state]!?!” Bea asks me, surprised.

I shake my head. “No. I think she is from New York originally. Her husband is from her.”

“That makes sense.”

“Yeah. Bigger city.” I say.

“So then what happened at the meeting?” Bea asked.

“Oh, right. So, I had given the principal an updated copy of Kat’s history– the one I gave you– when we first came in. So we all sat down. I handed the meeting over to Carrie, and she talked about Kat, our challenges, and where we are at now, how 6 months ago we couldn’t even really have her in a group setting, all that stuff. And then she asked for an IEP, with one on one support, and gave more data to back up why she was asking for that. By the end of the meeting, they seemed to agree, yet wouldn’t commit to a date for a second formal REED meeting. We did all agree on a drop of procedure for Kat. And we all agreed that she could chew gum, wear headphones to block noise, have breaks as needed, and use the sensory room without the IEP in place. Carrie talked to them about where we were at with her, what we were really working on, procedures we use to calm down, how we use validation and then repeat a demand but after that leave her be….that sort of thing. And we are meeting with the teacher for a one on one lunch with Kat on Wednesday. So that Kat can start to see her teacher as her safe person.”

“So it sounds like it went pretty good, for a first meeting. Carrie actually got a lot accomplished. I’ve seen families leave meetings like that and not get anything. It’s sounds like they will work with you, but you might have to push a little sometimes.” Bea says.

I agree. “There was just a lot of that double speak that I don’t like. The Principal is very nice, and I’ve now doubt she cares, but she kept saying things like, ‘it really doesn’t matter if our kids have a 504 or an IEP, all of our kids get what they need, no matter what label or program they have.’ Which just made me want to smile and say, ‘okay, perfect. Then just give me that IEP for my peace of mind.'” I hold my hand out as I say this and say it in a syrupy sweet princess voice.

Bea looks at me. She can tell I’m angry, deep down, even though I’m not saying so. I don’t like double speak. She knows I just want things laid out. She knows my philosophy is I don’t like games, be honest with me, because I’m honest with you. “That’s a principal for you. It’s a political position. Caring or not, it takes a certain kind of person to be in that position.”

I breathe. Okay. She gets it. Someone gets it. Hubby hadn’t. He had shrugged. I had wanted to scream at him.

“What about hubby? How did he feel the meeting went?”

“I have no idea. He said ‘fine.’ Everything with him these days is fine, or okay. It’s like after he had that one bad night with me, and was so upset, now he’s shut down. I don’t know.” I shake my head.

“Have you talked to him about how you are feeling about any of this?”

“Nope.” I close that down, quick. I’m not talking to him. She is always pushing me to freaking talk to him, and it always freaking backfires, and I always end up in this very big messy place and I can not afford to be in that big messy place right now. So no.

“On a very positive note, I think the new ABA girl is making headway with Kat,” I say. I do this; change the subject to Kat, to something safer when Bea is getting too close to a bomb.

“Oh yeah?”

I tell her about the new girl, and how she has been patiently spent sessions sitting outside playroom doors, either in silence, or watching the same show on different iPads, or playing the same game on different iPads, or talking through doors. And how, last session, Kat opened the door– the physical door, to the playroom– and allowed the new tech, Lynn into the playroom. The only rule Kat set was that Lynn was not allowed to look at her. It was really heart warming for me to hear Lynn say, “I want you to know you can trust me, Kat, so I am going to stay turned around so I won’t be able to see you. How does that sound?”

“Wow. That is really amazing. She did so good. That is so good.” Bea is smiling, and I think she is as happy as I am.

“I know. So we aren’t in another Meg dynamic.” Meg is her other tech.

“Meg is a tough one.” Bea agrees with me.

I sigh. I’ve been struggling with Meg for months; I like her, I really do. The problem is, she came from a center before working for the company who provides Kat ABA now, and this company does this differently than traditional ABA. They work with a lot of social and emotional goals. They use a lot of traditional social work/therapist type stuff in their ideas– like validating a child while setting boundaries. They don’t just sit at a table running trials. They are out in the play room, the park, we go to the pool, the store, we bake cookies, ext. They join our daily lives. It’s all about natural environment. Some things have been about teaching Kat to sit and attend to a task, of course, because she needs to be prepared for school. But most of her work is out in the real world, not at the table. So, anyway, Meg can be fairly rigid, and she is very, very, well trained in ABA. Which is good and bad. Because while she isn’t doing anything “wrong” a lot of times, she does make some mistakes in Kat’s program– because it’s not this black and white thing that traditional ABA is. So it’s more about feeling things out and knowing what to do in a given situation rather than following the ABA rule book. I’ve debated about asking for a replacement, but I genuinely like this girl. I don’t know, something about her. And I believe she truly cares about Kat a lot. She wrote to Kay everyday when she was on vacation, and before she left, just so Kat would get a letter every day while she was gone and help maintain the connection. Those things matter to a kid like like. And I feel like if she can let go of some of this rigidness, then, well, she would be a perfect fit for Kat. But right now, they have reached this point where all she has to do is enter my house and Kat starts screaming and having a fit, and I don’t mean a regular tantrum, or a little meltdown. It’s intense. Both BCBAs have described these fits as amazingly intense. And they have seen some fits. And the fits last until Meg leaves. This clearly can not continue. So, I’ve had this internal debate for the last month about what to do.

“Well…” I say, “I think we have a solution for Meg, too. We had discussed fading her out, but that’s not really what I want to do.”

“No. And the truth is, that would be another loss, and another change for Kat, which would be very hard right now,” Bea agrees.

“So what Carrie and I talked about what having Meg and Kat have sessions outside of the house– where Meg is less rigid, and Kat is less controlling. We think a few session away from home could act as a reset button. And Carrie plans on asking Meg to focus more on Kat as a person rather than meeting goals, and also on working with Meg to be more flexible and less Classic ABA.”

“That sounds really good. I like it. It might be enough to help change the dynamic.” Bea takes a sip from her travel mug. She’s drinking tea, I’m sure. She’s not really a coffee drinker.

We chat about day to day life; house cleaning, laundry, making lunches and dinners. I admit I have been slacking on yoga, and swimming, I have not been to Zumba for over a month, and poor Hagrid has not been getting as many walks as normal these last two weeks.

“It’s like I’m stuck in this weird limbo time. I can’t get anything done. I don’t know.”

“It’s okay. You will. It’s the time of year. There’s a lot going on in your life. That’s all it is. Just be gentle with yourself,” Bea reminds me.

I nod. I know. But it’s not so easy.

We wrap things up not too much later, and I head home to play with Kat.