Thursday, November 8, 2012

First Steps Evaluation

I didn't study for this!
Tuesday afternoon was our First Steps of Indiana evaluation.

I was dissatisfied.

It started with the evaluators showing up at 1:10 when our appointment was for 2:00. This meant that I had to wake the young man up from his nap in order to begin the evaluation, which is a great way for everyone to do well in any kind of testing environment.

The two evaluators played with LO and asked me tons of questions about his abilities. A lot of them were big stumpers. Was LO able to jump down from a step? I don't know. Does LO correct a book when it's handed to him upside down? I don't know. If a train leaves Atlanta at 4:00 pm traveling 65 miles per hour and another train leaves Philadelphia at 5:15 pm traveling 40 miles per hour, does LO press buttons with his index finger or his thumb? Aaargh!

As they went through their state-created tests, they filled in charts without telling me exactly what they were doing. At the end of the evaluation, they gave me their verdict:

LO has a 25% delay in social skills and a 25% delay in speech.

And this is where my big problems with the evaluation took root.

I asked them what a 25% delay meant. One of the evaluators seemed annoyed by my question. Why was I asking to understand what they had just decided about my child?

The other evaluator helpfully drew a bell curve for me and stated that toddler bell curves are tough because they tend to be flatter since there is a much greater distribution of normal behavior. After 45 minutes of playing with LO and interviewing me, they determined that his speech and social skills are two standard deviations away from the mean, meaning he is in the 7th percentile for those skills.

The social skills test must be bullshit, because if there's anything that LO excels at (other than playing with cars) it's socialization. The helpful evaluator told me that he got dinged in the social skills test because they didn't see him with peers. It made me wonder how they could create an evaluation that required seeing a child with peers and then use that evaluation without peers.

I know that I am feeling very defensive about all of this. (See me calling a test bullshit above).

Some of my defensiveness stems from the fact that the evaluators had a poor "bedside manner." Everything was matter-of-fact and straightforward without any explanations of what they were doing or how those tests determined anything. My questions were answered, but somewhat reluctantly.

Some of my defensiveness comes from the fact that every individual in authority I have spoken to--my pediatrician, these evaluators--has treated this like a problem. At no point has anyone said "You know, plenty of kids don't talk until they're three. I'm sure LO will be fine. But it's probably a good idea to call First Steps/get some speech therapy/etc, just in case." No one has felt the need to reassure me.

Some of my defensiveness is my own ego. I am a writer. Why isn't my son talking?

Some of my defensiveness is related to the fact that First Steps treats parents of all stripes, and so there is no assumption of competent parenting. Some of the questions they asked--about if he was getting adequate nutrition, for example--simply put my back up when nothing personal was meant.

Some of my defensiveness is in response to the fact that as a former educator, I recognize the very real limits of state tests. (When the evaluator told me [to reassure me, I'm sure] that some children will only need two or three weeks worth of therapy to accomplish their goals, my first thought was that their testing system must be faulty in those cases--although this might be unfair to the competence and abilities of the therapists).

Finally, my defensiveness comes ultimately from my fear that others don't see and understand the wonderful brilliance of my son. To them, he was a case number, a child whose name they repeatedly pronounced incorrectly. They do not know him, and yet they labeled him, which was exactly what I was afraid of happening if I called First Steps.

The evaluators'  recommendation was that LO have once-a-week speech therapy.

J and I have decided to go ahead with it. LO is speech delayed. Compared to his peers, his verbal skills are certainly lacking. I still don't believe there is anything seriously wrong, but speech therapy cannot hurt and it may help.

I had hoped that the evaluation would finally put to rest some of my fears. Frankly, I wasn't really afraid until my pediatrician recommended we call First Steps. But her concern made me defensive and more concerned.

I put off calling First Steps for a couple of months, but the concerns didn't go away. So, I hoped that by calling them, I would have some explanations and answers and I could finally turn off the tiny voice that whispered its frightening ideas to me.

Instead the evaluation simply stirred up more questions and concerns, and made me feel even more isolated from authority. I'm feeling as though I need to become the expert because I cannot trust the experts. They may know their forms and the typical toddler behavior, but they don't know my son.

I don't want to pathologize normal behavior. I don't want LO to feel like for every tiny bump in the road to maturity, there's a therapy/pill/expert for that. I don't want to feel as though my child needs to be state of the art with mastery of PhD level reading at age 4.

I do want LO to be able to navigate his world with curiosity, friendliness, and a love a learning.

With or without First Steps, I feel as though J and I are fostering that in him. We will accept First Steps' help, but we're already doing a damn fine job on our own.

And I need to be satisfied with that.

1 comment:

  1. Being premature, E has to have regular OT check-ins and is still delayed in physical development. She also has a higher than average chance of having learning disabilities and/or behavioral difficulties. So, I've thought a lot about this recently. I think you have to do a bit of semantic gymnastics to remind yourself that the evaluations and labels are a tool that you are exploiting on behalf of your son. They're not judging you - you are using them. At E's last appt, the therapist asked if she is using vocalizations to get our attention if we've put her down and left the room. And I had to say, uhhh, I almost never put her down and leave the room, except for sleeping. I have PSTD from her birth! I didn't get to hold her for days after she was born! Please don't judge me! (maybe that last part was in my head).