Yesterday morning, I spent almost two hours sitting at a long conference table. To my right was my husband. To my left was the third grade special education teacher. Filling up the rest of the seats– so many of us that we were shoulder to shoulder– were the classroom teacher, the physical therapist, the occupational therapist, the OT assistant, the adaptive technologies specialist, the speech therapist, the school psychologist, and the vice-principal. It was a crowd, to be sure.
Three years ago, we sat with the exact same group of people, subsitituting the gifted coordinator for the adaptive technologies specialist, and learned what A’s fate was to be, “special education-wise.” He was discharged, no longer qualifying for a single type of service. I’ve said it before and I will say it again– while that sounds like the dream outcome, it’s actually pretty scary. There’s some comfort in having an individualized education plan in place and having a large group of experts involved in helping your child.
But yesterday, we weren’t there for A. We were there for C. It was her triennial meeting and that’s a biggie– it’s the one where they do extensive testing and we get the results.
A lot of things were totally expected. She still struggles to catch a ball, for example. The vision processing is hard for her and trying to coordinate the various steps is frustrating.
Her handwriting is getting better, but she still has a hard time printing as small as some of her peers. Again, her depth perception is murky, at best, and it’s hard to get a good angle to really focus on the paper for tiny writing. She’s making progress but, if you put her manuscript up against the typical third grader’s, hers would probably look “young” because of its larger, chunkier size.
In the midst of some predictable news– e.g. math is a challenge– we all marvelled at the anomalies that have been revealed, such as her strong grasp of geometry. While her speech skills, for the most part, fall in a completely average range, her vocabularly and use of sophisticated language actually push into the advanced category. Fascinating stuff, and a very honest reflection of both her artistic nature and her love of reading and communication.
All-in-all, though, not much will change. She will, not surprisingly, continue to receive services– OT, PT, adaptive technology, academic support, and some articulation work (though she DID completely graduate the “language” part of SLP.)
I sat at the table, remembering a few years back, when I had been caught in a maelstrom of emotions at A’s triennial. This time, it wasn’t so dramatic. I had neither the devastation of worrying about her in the “mainstream” nor the thrill of knowing she had met or surpassed all goals.
And it’s that second thing that might make this seem like a failure.
So often, I hear people share their stories of children who “needed therapies but you’d never guess it now!” And, you know, I GET that. I really do. For pity’s sake, no one in the world would guess upon meeting A. today that he was ever labelled “profoundly delayed”– but he was. It’s super important to share those stories. They offer hope and perspective and those situations are very real and, honestly, not all that rare. Many, many children will need some therapy assistance early on and will then “graduate” and be totally on track. And that’s great!
But what does that mean for those of us who, after many years of therapy, sit at a table and still get a “below average” result in this category or that?
Well, I’ll tell you what it means for me.
I sat at that long table yesterday, listening to this team who knows my daughter SO well outline where she shines and where she struggles. Most of them have known her since she was three, so they get her. They were both compassionate and direct as they told me, “When we measure C. against C., we see her tremendous growth. She is fantastic and she’s doing beautifully. If we measure her against her peers, we see that they’re faster/stronger/clearer/etc…”
They weren’t being mean. In fact, I was the first one at the table to point out that fact. It’s just the truth.
But, in my mind, I wasn’t measuring C. against her peers. I wasn’t measuring her against her big brother or even her precocious little sister.
And, to be honest, I wasn’t even always measuring her against herself.
Slipping through my memories, I heard echoes of doctors’ voices:
“… likely won’t make it.”
“… may not ever walk.”
“… 85% chance of total blindness.”
“…. chances of surviving past 48 hours are slim.”
“… do you want to let her pass in arms?”
“It’s because she cried. Twenty-four weekers NEVER cry.”
C’s been doing things “twenty-four weekers never do” ever since.
And I don’t really care if she’s ever good at catching a ball.