. . . continued from yesterday’s post: Why is it Always So Difficult?
What I Wish I’d Known Ahead of Time
As I left for Matthew’s evaluation, my friend and neighbor told me, “Just remember: the fact that he can breathe on his own is miraculous … so everything he can do beyond that is just more frosting on his cake!”
Nevertheless, sitting down to go over the results was painful – and not just because we were sitting in chairs built for elementary school students. Listening to the therapists and teachers read their reports about this percent delay and that percent delay puts him at whatever age equivalent … and the lists of things he isn’t doing yet but should be … the ladies were very nice, and tried to put everything into a positive light, but it’s still really hard to hear.
Now, I’m not one to take test results at face value. Especially these – it felt so unfair, and the numbers just seemed wrong to me. Even though Matthew didn’t perform his best, it still just didn’t seem right.
(Yes, I was the annoying student in school that would argue discuss a test question with the teacher – but only if it was unfair, and only if I was right!)
I’m also mathematically-minded, so I asked a lot of questions about how the numbers are reached and what they mean.
Our therapists used the “Battelle Developmental Inventory (BDI-II).” It’s a common standardized test, which compares a child’s skills with typical kids (healthy, normal # of chromosomes) of the same age.
It works a lot like an old-fashioned video game, at least as far as the “age equivalent” score is concerned. Each skill is systematically checked off, and in order to “advance” to the next age level, a child has to gather every “check mark” in the previous level. If even one check mark is missed, he or she will be stuck at that level, even if he or she has many of the more advanced skills in the higher levels.
For example, Matthew’s speech is his area of most delay, so as soon as he missed a speech “check mark,” he was placed into that age level. He can’t say his own name, so he’s “stuck” at the 12-18mo level, even though he has many, many of the skills of the upper levels.
Also, his sign language really didn’t “count” for any of the check marks on the Battelle Inventory. Even though he has close to 100 signs that he uses on a regular basis, communicating much and often, the test couldn’t account for that. (He got a “check” for “uses gestures to indicate what he wants,” but that’s it.) We know that it counts, though! And, as I mentioned earlier, it was good to get affirmation from a developmental pediatrician that Matthew’s signs really are good language skills.
As we were discussing Matthew’s results, I asked if there was any data concerning how kids with Down syndrome perform on these tests. There is none. We have no way of knowing how he is doing compared to his peers. That’s when I asked the teachers what they thought – in their own experience, how well does this inventory work to evaluate kids with Down syndrome, and how “well” do kids with Ds perform on the test? As I mentioned previously, I was told, “Oh – we’ve never evaluated a child this young with Down syndrome.”
Doesn’t exactly inspire confidence, does it?
With that said, here are my favorite results. (I’m not reporting the language scores, the age equivalencies or percent delays, because I don’t care for those at all!)
- Cognitive: 74% of skills needed by age 3
- Social: 94% of skills needed by age 3
- Adaptive: 82% of skills needed by age 3
Pretty great of a kid who was only expected to live a few hours, huh?