“You’re so smart!” Sam’s physical therapist said to him this morning. She had brought a new toy—a bouncing Tigger—to try to inspire Sam to work on jumping. He had no interest in jumping, but he promptly walked over and turned Tigger back on when the bouncing toy stopped, despite no one having explicitly shown him how to do so.
She’s right—he is smart. This morning he outsmarted me once again, in fact. He padded into the kitchen on his two-year-old pajama-clad feet and headed over to the pantry, from which he grabbed a bag of chips. As he always does, he carefully closed the door, and I presumed he was headed to the breakfast table to eat his breakfast of chips. (Don’t judge—the kid has terrible eating habits! We do what we can.) But this morning, I was wrong. He wanted to feed the dogs, and I had been so cruel as to put them behind the baby gate, in the living room where they couldn’t beg for the scraps Sam loves to toss them. So, all business, he took his bag of chips over to the gate and squatted down to open it so he could feed the dogs through the gate. Nice try, mister.
I watched him yesterday, playing with the train table at the bookstore, and I marveled at his innate sense of how to navigate the complex series of train tracks and buildings on the table. He carefully pushed his Thomas engine through one end of a tunnel and reached his chubby little hand into the other side of the tunnel to pull Thomas out the other end, all the while with his tongue slightly protruding, as it does when he’s deep in concentration. How did he know to pull the train out the other end, I wondered? This child who is supposedly so delayed—how did he intuitively grasp the concept of object permanence and realize that Thomas would come out the other end with a little help? I never showed him that. I don’t think anyone has; he just knew.
Every day my kids amaze me in some way—both of them. The one with 46 chromosomes and the one with 47. They both have so much potential, and I’m constantly amazed as I watch it emerge. But with Sam, my little 47-chromosomed kiddo, I’m frequently reminded that he’s limited. Not by Sam himself, mind you—he’s brimming with that amazing kid potential that bubbles out naturally. But by assessments and professionals and standardized tests. I’m getting used to it…as much as one can get used to it. But I can’t say I like it or even appreciate it.
Recently, we were offered the chance to enroll Sam in a study for the MIND Institute at UC Davis Medical Center. The study was designed to look at environmental causes and risk factors that might impact autism and developmental delays. By virtue of having a developmental delay, Sam was eligible for the study.
We agreed to participate for a couple of reasons. First, Theo, our older son, is supposedly on the autism spectrum, so we have a vested interest in helping with research that may eventually lead to a better understanding of autism. But second, the study offered us a free developmental assessment of Sam. We get plenty of developmental assessments from our Regional Center and Sam’s Early Intervention, but I’m never thrilled with them. I always feel that they score him lower than what he’s capable of, and I find it disappointing. His most recent assessment from the Regional Center was no different—they evaluated his skills as much lower than I think they really are.
So in my heart, I hoped that the MIND Institute would see what the Regional Center’s assessments don’t seem to see—the incredible potential and value in my Sam. Because I can see it, so surely the Regional Center is just missing it! They don’t know Sam like I do, and they’re overloaded with cases and perpetually rushed…maybe that’s why they don’t see it. I figured if the MIND Institute returned a stronger assessment than we got from the Regional Center, I could add it to my arsenal for negotiating Sam’s preschool placement during his upcoming IEP. We want him in a mainstream classroom, and the school district doesn’t offer that. I figured a strong assessment from the MIND Institute would help us argue our placement, if needed. And it would validate my belief that Sam is capable of a lot and is achieving a lot in his own way.
But that wasn’t the case. The assessment results from the MIND Institute arrived today, and they weren’t any stronger than the results from the Regional Center. In fact, they were actually lower. His skills in the eight areas assessed maxed out at an 18-month level, with some being as low as 15 months. Currently, Sam is 32 months old. He ranked in or below the 1st percentile in everything except Socialization, where he broke into the 3rd percentile.
Just in case I wasn’t aware of what that meant, the cover letter spelled it out for me in plain terms: For example, Samuel’s percentile rank of 0.4 on the Adaptive Behavior Composite tells you that only 0.4 percent of the people Samuel’s age in the norm group had lower scores than Samuel. Which also means that 99.6 percent of people Sam’s age in the norm group scored higher than Sam in adaptive behavior, which consists of communication, daily living skills, socialization, and motor skills.
Wow. He’s so much more, and I know it.
But this is a stark reminder of why I need to be his advocate. Everyone who doesn’t know Sam well will evaluate his potential on numbers like this. They will see that he’s behind 99.6 percent of his peers, and they will make a judgment about his ability, his potential. The people who are close to Sam—me, the rest of our family, his therapists, his teachers—are well aware that the numbers mean nothing. But that’s a small group of people in his corner, and the vast majority of people are reading reports like this one and seeing him as hopelessly far behind.
I got an initial email regarding Sam’s preschool placement today, and the woman cordially told me that they have a few special ed classrooms I can view a couple of weeks before he starts. I wrote back and equally cordially told her that we would like a mainstream, fully inclusive class for Sam, as that is what will best suit his needs. I told her I didn’t want to waste the assessment team’s time by having them show me something that wasn’t going to fit his needs, so let’s talk about mainstream, fully inclusive options. I already know the initial response is going to be that such options don’t exist in our district. I’m well aware of that. But as the head of the small group of people who know that Sam has unlimited potential that can’t be measured by an assessment, it’s my job to make such options exist even when they currently don’t.
This isn’t okay. I’m not out to prove that Sam is some sort of Down syndrome superstar who is going to wow the world and be the first person with DS to be accepted to Stanford. What I am out to prove is that he cannot and should not be underestimated. And not just because he’s my son and I know what he’s capable of, but because no child—no person—should be underestimated. 99.6 percent of people in “the norm group” may be able to score better than Sam on a standardized test, but that is no prediction of what he can do if given an equal chance. He deserves that, like everyone deserves it. People who know him can see it. Now I just need to make people who don’t know him see it, too.