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An Update on Aerin

Yesterday, we had our final meeting with the Early Intervention (EI) evaluation and placement team. They recommended that Aerin meet with a developmental interventionist twice a week, and a speech therapist twice a month.

I became rather upset after this meeting. Not because they were saying Aerin is delayed and needs therapy (I have accepted this after the first meeting), but because their evaluation seemed inaccurate after further examination.

When I looked over the initial evaluation carefully (I hadn’t seen the scores they had assigned for each skill, and didn’t receive a copy of the full evaluation until last week), I noticed that they had scored Aerin lower than they should have. Now, I’m sure some of you are wondering if I’m being biased. But I recall our evaluation very well — it was only 3 weeks ago — and there are some skills they did not test her on, ask us about, or even mention, that they just marked as a “future learning objective.”

(The test was based on the Battelle Developmental Inventory, which consists of a checklist of milestones and skills. Each skill is to be categorized into one of three categories: mastered, emerging, and future learning objective.)

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Aerin’s current favorite toy is this Ariel doll. She carries it around EVERYWHERE.

There were also some skills that I specifically remember our discussing, that they marked in a lower category. For example, they marked “Expresses ownership or possession” as a future learning objective when I thought we had declared it a mastered skill.

Additionally, there were times when it seemed like they wouldn’t take my word. When they asked if Aerin could identify herself in a mirror, I responded absolutely — she’s been doing this for a long time, and always runs to the closet door mirror whenever we put a new hair pin, hat, or clothes on her. But then they brought out a small, compact mirror and showed it to Aerin. She took a look, smiled at her reflection, and walked away. I saw that they had marked this skill as “emerging” when it was obvious to me that she prefers the large, bright mirror with which she’s familiar over a small mirror held by a stranger.

Some skills just seemed unfair, like how they scored Aerin low for not being able to walk up and down stairs by herself. She crawls up and down stairs because she’s little (under the 10th percentile for both height and weight) and her short legs make it practically impossible for her to walk!

Then there’s her vocabulary. When we did our initial evaluation, they asked me how many words Aerin knew, and I answered 10. They asked which words. Being put on the spot like like that, I could only recall 6 of those 10 words (I only started keeping a list after this meeting), and 6 was the the number they used in the final evaluation.

During our meeting yesterday, I told them that the number of words and 2-word phrases she knows has more than doubled since the evaluation (she knows more than 20 now). I went on to clarify that I only count a word/phrase if she regularly uses them, and I know for certain that she knows the meaning behind them….and they said that I should also count the ones she says once in a while too.

What? So not only was the first number they recorded incorrect, both numbers should definitely be higher too. But they didn’t seem concerned about this at all, and made no note of it.

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“Wake up, unnie!”

A friend wondered if the EI evaluators had purposely scored Aerin lower so that she could qualify for more services (which isn’t necessarily a bad thing, and they may believe that every child needs all the help that they can get), and/or in order to help us qualify for insurance. I can certainly understand the first theory, but the second does not seem true, as they’re the ones who told us about the state’s family cost participation program, and went on to inform us that this would be more affordable for us than insurance.

And this is where my cynical, suspicious side comes in. I discovered that the state of New Jersey outsources its EI program. Meaning, they will ask outside parties to do the evaluations and therapy sessions, then reimburse them accordingly. So there’s a possibility that these companies intentionally score kids a bit lower so that they can make more money.

Am I being overly skeptical and paranoid? Perhaps.

J also questioned the accuracy of the first evaluation by pointing out that kids like Aerin, who are shy and weary of strangers, are naturally less likely to interact with people they don’t know well. Which is a valid point, especially seeing that they started the evaluation almost immediately after they walked through the door and it lasted only an hour. I remember that a few times during our evaluation, Aerin refused to do certain things I knew that she could do and does regularly. But when I pointed this out to the evaluators, they just smiled and marked the skill as “emerging” or “future learning objective” on their checklist.

Nonetheless, J and I have decided to go ahead with the therapy sessions. They can’t hurt (aside from our wallets), and I think interacting with other adults on a regular basis will help Aerin out of her shell. I also know that they can teach me a lot of things about child development too, and I would be grateful for the help.

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Aerin has made tremendous progress in the past few weeks alone — not only has her vocabulary surged, but she’s also picking things up faster than ever, following directions, and more. Based on this alone, I can’t help but agree with J and my parents that she’s delayed (most likely due to her illness a few months back, because she was on track with everything before she got sick) but will catch up soon enough.

To be completely honest, my mommy instincts are telling me that she does not need therapy. But, like I said above, they can’t hurt. And if it turns out that my instincts were wrong, I will be glad to have given Aerin the extra help.

Right now my biggest concern is how I will juggle Claire’s preschool and Aerin’s therapy sessions, both of which will begin at about the same time. I guess I can see this as an early start to the years of extracurricular activities that lie ahead of us?

As for the possibility of autism, I am not too concerned about that anymore because of all the progress she’s made lately. Besides, both our pediatrician and the EI people told us that they prefer to test kids after they’re able to talk more. (And when I asked our doctor about the possibility of a long wait for a developmental pediatrician, he said his patients have never had to wait long after a referral.)

I should also mention that we have an appointment with a pediatric ENT physician this Friday. We want to get Aerin’s hearing checked by a specialist, just in case.