I’m done talking…

That’s what I said in our Early Steps evaluation today when the mood in the room went from zero to ELEVEN. But let’s go back to the start of our day.

We woke up at 5 a.m. to murderous screams from our daughter. And 45 minutes of soothing didn’t help, so Rob strapped her in the car and started to drive. I slept. He came back with nasty coffee from Chik Fil A and a breakfast chicken sandwich, which are oh so tasty.

Reagan took her morning nap at 9:30 (the time I wish she would wake up)…it lasted an hour. Ok, so we are one nap in at 10:30 and we have an Early Steps evaluation at 1 p.m. today. It’s gonna be a looooong day.

Fast forward to 1 p.m. we are in our evaluation for Early Steps. Please don’t ask me what this government agency does, b/c…well, they are a government agency and the 10 times I’ve asked the same direct question in a variety of ways has never gotten me a straight answer.

Let’s begin.

Our eval started with three early steps folks and our little family. Rob played with Reagan and an evaluator, while I answered questions to another, and someone typed on a computer. It was hard for me to answer questions with “no she doesn’t do that…I don’t know, no…I don’t understand your question…that’s not applicable” It was VERY hard for me to answer these questions and I became irritated with each additional question, so much so that I almost asked, “are you about finished?” but I refrained.

We stepped out of the room for them to score Reagan and when we came back we had the results. She’s doing great socially…she loves people, pays attention to them and smiles, laughs appropriately. This is great, but it’s also sad that our daughter has to be tested for her level of social appropriateness. Unless you’ve had to go through this, you don’t understand. In all other levels (speech, cognition, ability to eat, dress, play, use her hands, etc) she’s severely delayed and her decreased motor function plays a large role in her delays.

When one of the evaluators asked if we had any questions…this is how the conversation went:

AM: Yeah, what exactly are you here to help us with? We are already getting therapies, and everyone has said we need to see Early Steps, how do you fit into our plan to help our daughter? Is she able to get additional therapies through Early Steps? Do you kick in when our insurance either runs out or decides not to renew her extended therapy approvals?

Evaluator 1: Well, we don’t provide therapy. We provide parent education.

[my blood pressure rises to 1,000]

AM: Ok I’ve heard you say {motion air quotes} “PARENT EDUCATION” a whole bunch and I DO NOT need parent education. WE do not need it. WE are educated people, and I’m getting super annoyed that you keep saying “parent education.” What does the person from Early Steps who comes to our house do that’s different? Are you just not allowed to say you provide “therapy” b/c if that’s the case just tell me that the words are interchangeable so that I know you just have to use that term.

Rob: Anne-Marie, calm down.

AM: It’s just making me mad that they won’t use the term therapy, I don’t understand why we are here…our daughter needs therapy, what are they doing that’s different than what we are receiving? I’m done talking. You talk, Rob.

Rob: OooooK

Evaluator 1: Well, someone would come into the home and do things to help Reagan progress and then teach you how to do them when they’re not there.

Evaluator 2: A session with someone from Early Steps may look similar to a therapy session that you currently go to.

Rob: Yes, b/c currently, the therapist works with Reagan and then tells us what we can work on at home.

Apparently that’s parent education.

Evaluator 1 wants to go over goals, meanwhile, Reagan likely feels my ELEVEN status and I take both of our fussy selves to the car while Rob finishes the appointment.

Rob comes to the car with our scores and a booklet of schools and assistance that’s here locally and there I see an ad for Early Steps and their list of services. I think I should cut the ad out and give it to evaluator 1 so that she can understand where she works. In this tiny 1/4 page ad, the service of therapy is used FOUR times, that’s a lot for a place that “only provides parent education and NOT therapy.”

you actually DO provide therapy.
you actually DO provide therapy.

I asked Rob when I started to get all heated in the meeting what level of bitch I was at…he said, “definitely 10…well, I take that back, I would say nine b/c you didn’t swear.” Honesty. I can appreciate honesty.

I told my friend Rachel about my day and I know she’s just shaking her head wanting to bang it against the wall for me. She’s Italian. She gets my level of frustration, and she can go to eleven too. The one thing she did say was that she can more clearly see, now more than ever, that I’m the mom for Reagan. That where Reagan is currently, and what she needs currently…is me and Rob fighting for her. I regularly feel like I’m failing, like I have no strength to muster, and that she’s getting jipped in the mom department. I hope I am what she needs, that WE are what she needs. I do believe God knows what he’s doing, even if I don’t understand it. I wish I could understand more all the things that are at play right now.

This evening I asked Rob when I would just start accepting the circumstances we have. He said the reason we’re both currently not accepting the circumstances we are in is b/c we are trying to get Reagan better and we don’t know where better is yet, that’s why we’re fighting. We will fall, yes. But the goals of wanting Reagan to walk and talk and eat and communicate and to get those things back…for that to happen, we can never be done fighting for her.

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