Chapter Two: In Which Rowenna Has an Evaluation

Last week, Rowenna had her formal evaluation with the local school district. This evaluation will determine whether or not she qualifies for special education services.

There are a few possible outcomes in our district. Children can qualify for “full time” schooling (4 days a week, about 2.5 hours each day), part time schooling (2 days a week, about 2.5 hours each day), or therapies only. As parents, we also have a choice – if they recommend 4 days, we can place her for just 2. And so on.

We already know Rowenna will qualify for services, and she will likely qualify for the highest level of intervention – 4 days a week of school and therapies. In many ways, this evaluation was simply a formality since her diagnosis and needs are relatively concrete. A friend described it as a “means to a means.” It was just an opportunity to get her ticket to the next step in the service system. The results don’t really tell us much about Rowenna herself, other than the obvious: she has a developmental disability and does things differently than her same-age peers.

And even though I know the evaluations mean basically nothing about who she is, and I know better than anyone my girl’s strengths and weaknesses, it is always a bit of a blow to have a stranger point out all the things she can’t do.

What is particularly bothersome is the know-it-all attitude we keep coming across when Rowenna has an evaluation. I’m all for professional confidence, and professional expertise, and I defer to it when warranted  – but what I am not interested in is an “expert” telling me that my child doesn’t “really” have a skill, or that signs don’t count as “real” words.

As Rowenna’s mom, I know her quirks. For instance, I know you cannot get anything out of her – at all – if she is not allowed to first briefly explore a new environment and approach new adults on her own terms. And in some ways, I think this is a pretty excellent skill, and something a lot of people would want to do. When you go to a new doctor, don’t you sort of nervously look around the exam room while you wait? Check it out, look for things you don’t know about? When you are at a party with a lot of strangers, do you like it when a bunch of them rush up to you at once and ask rapid fire questions?

Why shouldn’t my child be allowed a few minutes to simply see where the heck she is and make sure she is safe?

The evaluation started literally as we walked through the classroom door. The occupational therapist picked Rowenna up and sat her in a chair, expecting her to immediately start working on a puzzle. I sat down across the table from Rowenna so she could see me, and said Rowenna would attend to tasks a lot better if she were allowed to explore the room first.

Well, this was ignored and sure enough, my girl refused to do anything. I’m just her mom, right? What do I know? I said it again and they reluctantly agreed. After a few minutes of looking around the room and checking out the people in it, she got right down to work.

For over an hour, she moved from task to task, surrounded by five adults, all taking notes and talking to each other and to Rowenna. And I mean literally surrounded – there was maybe a foot of space between Rowenna and the adults. It was chaos. I was overwhelmed; I can only imagine what Ro was thinking.

They asked me questions, too, as they went – some answers were met with a smile and a nod, others were met with a raised eyebrow and a glance at another therapist. They asked Rowenna to do a few things that I’ve seen her do dozens of times at home but she wouldn’t do on command for them. She can be stubborn, like me, and she doesn’t like to perform on command like that. The therapists didn’t really seem to believe me when I answered honestly that she could do something she refused to demonstrate, but of course they were oh so quick to believe me when I said she couldn’t do other skills they asked about.

Sometimes I really wonder what happens during therapist training. Are they taught a child with Down syndrome is simply an unresponsive lump? Hearing that my nearly 3 year old has a certain number of signs and spoken words or that she can walk down stairs while holding a railing should not be met with unmasked surprise or skepticism. And this has happened time and again throughout the last 2.5 years. I want to believe therapists mean well but yet…here we are, people not believing that my child is capable of some age-appropriate skills or behaviors.

While all that was going on, I was supposed to fill out a 20 page packet that clearly outlines all the things Rowenna can’t do. Question after question, even spots to further clarify what she isn’t doing. It is exhausting to do this. I wonder if parents of typical kids are ever asked to sit down and detail what their children can’t do. With each question, I racked my brain: does she do this? Consistently? Without help? Is this something I should have been working on for months or years? Is it my fault she can’t do it, or is she just not ready? Is she not ready because I haven’t offered the opportunity yet? Will she ever do it, and does it matter? I think I have a handle on Rowenna’s abilities, and every once in a while we have to do something like this and it’s like a sucker punch. I ended up asking if I could just finish it at home and send it back.

The whole afternoon was exhausting. Rowenna was asleep before I even pulled out of the parking lot, and I can’t say I was in a great mood.

My issues with how the evaluation was conducted aside, herein lies what makes me worry so much about placing Rowenna in public school: can I turn her over to a team and a program that focuses on her deficits? Will this be a team willing to see past the can’t in order to see the can? Is this a team who is open to the input of the people who love and know Rowenna? Is this a team willing to be…a team? Not just a set of experts “treating” Down syndrome? Will they value the things we value for our daughter and our family?

In two weeks we will sit down with the members of Rowenna’s official team and learn the answers to all these questions. We will finalize her IEP (the legally binding contract between our family and the school district that outlines and promises specific services) and then we will have the next few months to decide what will be best for Rowenna.

In the meantime, I will continue to consider this experience simply our “means to a means” – a ticket, a next step. The sting has already come and gone. Life has moved on. And stay tuned for Chapter 3, in which we sign off on an IEP.

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6 responses to this post.

  1. I am always amazed at how kids are supposed to “show what they know” to a bunch of strangers in a new environment on command. I don’t know of any 2.5 year olds (Ds or not) who could do this, but yet, they use this to determine services for our kids. In a lot of ways the Ds label is very frustrating because so often “experts” assume every kid with Ds is exactly the same, and as parents we are left to fight numerous generalizations. Hang in there, our IEP process is just starting here and I am not looking forward to it.

    Reply

  2. Having worked in education, I can see some of the reasons behind the therapists’ and teachers’ for doing certain things. For example, getting started right away. It’s a pain in the butt to get everyone scheduled at the same time for the same thing. Usually, someone is missing for whatever reason. So, big time crunch. That’s not your fault. That’s the fault of a broken system.

    One of the big, red flags is the fact that your words seemed to fall on deaf ears. Aside from student teaching and officially graduating from UW (Madison), I have a secondary BA in K-12 Special Ed. I also have a BA (and teaching license in Wisconsin) in elementary education. I cannot imagine NOT listening to the parents where their children are concerned. We had that pounded into our heads: parents know their children and they are the experts.

    I think you have every right to be frustrated. Just remember that you own the IEP process. Do not let the teachers and therapists bully you into something you don’t feel comfortable with. Just remember, the IEP is going to be about setting goals for Ro and that means addressing her deficits. It’s not going to be fun to hear but IEPs are about addressing goals, which means addressing things she can’t quite do yet.

    Reply

  3. This: “can I turn her over to a team and a program that focuses on her deficits? Will this be a team willing to see past the can’t in order to see the can? Is this a team who is open to the input of the people who love and know Rowenna? Is this a team willing to be…a team? Not just a set of experts “treating” Down syndrome? Will they value the things we value for our daughter and our family?”

    Exactly.

    I so know how you feel. And I’m rooting for you guys.

    Reply

  4. I can imagine your frustration on so many levels. My “typical” girl instinctively does not trust strangers and would be horribly frightened walking into a room and being forced to interact with adults she doesn’t know. Most adults I know would do the same. To expect it of a child is insane. Did they take anything from her Montessori experience into consideration? Any feedback from her teacher there, and how she blossomed there this year?

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  5. Baffling. Again and again. To date Cora has never “performed” for anyone. And she’s uber shy. So I guess I’ll start setting up my expectations accordingly. But you are so right with your concerns. It will be interesting to see what kind of team emerges for Rowenna. Many times the teachers don’t have the expectation of the evaluators. I have been really lucky with the perspective Cora’s team brings. Their positivity is so important to me and I may just have some culture shock to face when we head in for our next step (although we don’t get IEPs until kindergarten here- just IFSPs with a different group of people.)

    Reply

  6. Are there any organizations close to you that offers advocacy to parents through the IEP process? As a parent you have a lot of power in the creation of that IEP. Where I LIVE, The Arc of the Midsouth trains volunteers to act as advocates to help coach parents through this process and even to attend IEP meetings with the parents. Having someone there with you like an advocate, keeping you informed of all of your rights could be so beneficial to you, and make this process less intimidating.

    Reply

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