We have known since Linc was less than a month old that he would start school at 3 years old. And we heard over a year ago that one of the first steps in the transition to his upcoming school program would be an assessment done by the school district to place Linc in a class based on his development level. As much as we knew it was coming, though, we pushed it out of our minds completely until the end of summer was in sight. Suddenly, in mid August, we started to feel the threat of fall hang over us; our fears over sending Linc to school were stirring under the dying summer heat like a shift in barometric pressure that predicts a storm. We could feel a change was coming and were wondering if we should bolt the doors and slam shut the windows against it or face it head on and take in the smell of impending rain. Many nights we sat up late at night (I’m talking 10:30 here) discussing what to expect from the assessment. We doubted the wisdom of putting our tiny, vulnerable toddler out in the world so soon, and took turns convincing each other again it was the right choice.
We were so aware of the coming change that we started to notice the summary sheets left by Linc’s in home therapists as artifacts from a passing era. One afternoon, I stood in the kitchen, reading the sheet left by his speech therapist and cried because I was unnerved by the transition and wanted to hold on the way things were, the familiar routine we had spent three years carving out. As Sam described, those people had been with us since Linc was a newborn, and their presence in the house was a reassurance that if we were doing something wrong, someone would be there to catch it and correct our mistakes. As of October 1st, we were going to be on our own.
To make matters worse, we received a packet from Easter Seals to help us prepare for the assessment that contained pretty much every piece of paper in Linc’s file. It had medical records, bi-yearly assessments, forms filled out and signed, a sort of written record of everything DS. Sam said just looking through it made him feel strange, and I didn’t even open the thing. I just stared at it, thinking that big envelope was some kind of reflection of who Lincoln is, or at least worrying that others would think that’s what it was. Is that what the assessment would be, I fretted, an attempt to reduce Lincoln to a pile of papers, define him by what check box he fit into? Finally, I had to remind myself that Linc has always been more than the sum of his parts, more than a “damaged” genetic code, more than the exhaustive file detailing his existence. When I look at his shoe, I don’t think it defines his foot. So why, when I looked at that stack of papers, did I think it defined his being? Or, for that matter, even his development?
I told myself that no matter how the assessment went, we would not let it define him for us. He would not do everything he was capable of doing, would not perform perfectly, and that would be all right because he would also likely do more than would make it onto their forms, more than the people assessing him would catch in the distraction of the moment. And we would always remember that he was more than he did that day, was capable of more than he was willing to exhibit for the crowd.
Despite telling ourselves that, we were still so nervous we were sick to our stomachs on the way to the assessment. Linc was his usual charming self once we arrived, but as the interview began, it seemed like we were already flailing. We had forgotten to bring the paperwork we were supposed to have completed (that was still sitting in our mailbox, unopened). Plus, the truth is that no matter how prepared you are, it’s hard to answer questions about your child’s development when many of the answers are, “No, he doesn’t do that yet.” One of the difficulties of testing children like Lincoln is that he is very emotionally intelligent while being on paper rather behind in many areas. His ability to comprehend and express is much higher than can possibly be expressed on a rating of communication based almost solely on verbal abilities because Lincoln absorbs and uses the full complex set of physical cues that, integrated with speech, make up actual communication. He can show anger without throwing a tantrum, tease his brother without verbal taunting, show enthusiasm without laughing all because he mimics tone of voice (his babbles have meaning just with their tone), signs with expression (more rigidly when angry and more emphatically when excited), and has mastered the art of eye contact plus facial expression plus body language. All great skills, but certainly not on any standard assessment test.
And then there was the issue of the outdated terminology used on all those forms we were filling out. It was hard to hear over and over again that he was qualifying for services based on his diagnosis of mental retardation. Even the district’s psychologist, who was leading the assessment, was apologetic every time she had to say it. You know we hate the R-word, and honestly that is not even his diagnosis, just some umbrella term popularized many decades ago when people the state deemed mentally retarded were put into institutions and left to rot. I am happy to report, on a side note, that with the passing of Rosa’s Law earlier this month, we will never have to sit in an assessment or meeting again and hear our son called mentally retarded. I know it may seem like a small thing, but to us, it represents what we hope is a changing attitude in all levels of society towards people with disabilities. These little victories add up over time, each one building on the last, creating real change one brick at a time.
But in the end, if you can believe it, we left the room with an optimistic take on the whole thing. The warmth and patience of the staff did much to dispel our worry that a public school classroom would be too austere for a toddler. We got to meet his new speech therapist and hear how thrilled his new teacher would be to find out that she was getting Linc in her class. And perhaps best of all, Linc was placed in the class we were hoping for (with typically developing peer models to learn from and play with) at his home campus, less than a mile from the house.
It was really the best possible outcome we could have achieved that day and yet another reminder of two very important truths. First, Linc doesn’t know his limitations, doesn’t feel defined by a diagnosis or an outdated and hurtful label; he just is. And second, who and what Lincoln is resonates with so much more force than any attempt to categorize or label him ever could. As I wrote at the beginning of this month, we soon realized that the hardest part of the whole thing would be forcing ourselves to walk him in the door and let go of his hand. And I guess you all know how that went, now. Hooray for happy endings (or, in this case, beginnings)!
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