~ Diary’s Facebook status, yesterday afternoon
(ed note: the 2nd ‘qualitative’ should have read ‘quantitative’ – that’s what I get for typing on my phone)
“Way to prove those tests wrong, Brooke!”
“Those doctors don’t know what they’re talking about.”
“Those scales mean nothing! The only comparison that matters is Brooke to Brooke!”
~ Comments from readers, family, and friends
The tests weren’t wrong. My daughter, who will turn ten next month, is speaking at the level of an early six year-old. (And that’s okay)
The doctor actually knows exactly what he’s talking about. Dreamy has been seeing Brooke since she was five. He gets her. He adores her. He sees not only what she is capable of doing in the future, but how much she does NOW. His evaluations are one of the most powerful tools we have in understanding and supporting Brooke.
My daughter’s language is at the level of an early kindergartener. And that, of course, is okay. (See above.) But it matters. When her peers are fluent in the language of late fourth grade and she’s working on answering HOW and WHY questions, it matters.
I’m not trying to minimize, nor, heaven forbid, belittle my daughter’s progress. It’s huge. And it’s to be recognized and celebrated at every turn. But it is contextual. And, if she is going to be in an inclusive educational setting, the context matters.
One of Brooke’s most significant challenges is her anxiety. It’s a demon that looms large in our lives. We’ve fought to help her control it since the beginning — since the pediatric anxiety clinic recommended by Children’s hospital turned her away because they didn’t see children ‘that young” Sometimes we’ve addressed it successfully, often disastrously, but we keep at it. And we keep at it because It’s her greatest hurdle to learning, but even more importantly, it’s her greatest roadblock to BEING COMFORTABLE throughout her day – throughout her life.
Brooke is in an integrated fourth grade classroom. She has a team of people behind her, providing the support that makes it possible for her to be in that room. And this is the stuff that they – that we all – need to know if we’re going to provide the right support. If we are to make the curricula (both hidden and overt) accessible to my kid, we need to understand her experience. And as much as we might like to ignore the context, that would do her a tremendous disservice.
The other day a friend asked for advice. Her child had been sent home from school for biting his aide. My advice was to find out why. What got him to the point of distress that he reacted physically? The only real sustainable solutions lie in figuring out how to avoid or work through the stressors that caused the escalation, not in planning for how to react after the fact. (A plan for intervention is vital, it’s just not going to solve the problem.)
In exactly the same way, if we’re going to help Brooke avoid, or at the very least work through, her anxiety, we’ve got to know what’s causing / exacerbating it throughout her day. And it doesn’t take a whole lot of thought to realize that putting a child with the functional language of a kindergartener in a fourth grade classroom is likely to cause some anxiety. The awareness of the disparity in language helps us understand how to better help her in (and out of) the classroom.
We don’t live and die by these tests. They ain’t the Sermon on the Mount. Their results are subject to – and often do – change. But they matter. They tell a part of the story that we don’t see with the naked eye. And that’s okay. I spent some time over the past few weeks beating myself up for not having seen it. For somehow missing that she went from the 37th percentile to the 1st in one year. But I’ve retired the hair shirt for a while. Because I realized that it wasn’t my job to see the comparison. It was my job to see my child. To recognize the miracle of her progress in her way. And then to go and find out the rest of the story so that I could do everything in my power to make her comfortable in her environment.
That’s my job. So that’s what I’m trying to do.
The tests matter. They just don’t tell the whole story.
“We must pray for miracles, work like crazy for miracles, expect and demand miracles, and for goodness sake, we must see them for what they are when they happen.”
~ Words I read years ago from the mom of an autistic teenager that now live inside my soul