Nato, my son with Downs usually likes everyone he meets. Of course he has favorites, and on the rare occasion this choice confounds me. Take for example a high school special education teacher. The first time I met her, she’d just been hired so the meeting occurred a week before school started. I won’t ask anyone to guess her greeting to me, I’ll tell you her words; “I’m so excited to be here and working with these low functioning students this year.” This is what every parent wants to hear, especially one who has been their child’s outspoken advocate for all the previous years in public schools. Yet Nato held such an affection toward her, and I saw that she liked him too. I let it go, for the most part.
My son could not learn to be literate. In mid junior high his special education teacher called me in to tell me she would no longer attempt reading instruction because it was obvious to her that he’d reached his limit. Oh let’s wave a red flag to a bull, why don’t we? After some investigation I found out that a top university had a speech and literacy program and it was only a 50 minute drive away. That began an odyssey for us. Marge* was simply amazing. The first session was a lot of testing and an informal study of Nato’s favorite things. Next time she unfolded her plan. [13 pages and exactly the components of an elementary class introducing the wonderful world of words and reading.]
Marge and Nato began making books right away, books reflecting what he liked or thought about most; his Bar Mitzvah, overnight camp and his favorite counselor Ben, the movie Space Jam with Michael Jordan, and the all-important Power Rangers. Nate wrote his first sentence in the book about camp and Ben. He read his books to me every night. Along the way Marge began introducing story books with limited words and great pictures. I loved “It Looked Like Spilt Milk.” Marge included the high school teacher [at top] so that the reading program would continue in school. We wrote Marge into Nato’s yearly Individualized Education Program and she began working in his class once a month. Lo and behold some of those other “low functioning students” began reading too. Then came the day in 11th grade when his teacher, sigh, same one, suggested we discontinue reading. Why? At that point he was reading primers with 300 words. The teacher thought it time to stop, after all she argued what would he do with the skill after he left school. This explanation still sends my temper and blood pressure rising.
There is a saying in the Downs community; (People with Down syndrome are…) More alike than different. My middle son walks, talks, feeds himself, cooks his own meals, has likes and dislikes, loves movies and the Internet and his game system, and going to dances with friends. He is also a wonderful brother and uncle and son. Every year he makes a birthday banner for me, and hides any cards that come in the mail until the big day when they magically appear on the dining table at my place. My inquiring mind gnawed on the improbability of his occasional friendship with someone I’d rather not know, let alone associate with. All I can tell you is this; don’t we all make judgments that in later reflection are deemed not the best, or “off” in some way from our normal cool appraisals? We are, after all, a species on this planet who, for the most part, enjoy the company of others, being part of groupings, and enjoy social events for the content (the music at the concert, for example) as well as the sense of belonging (in the crowd).
Who am I to judge my son’s choices in friends? Again; as long as they are not predators, or out to hurt him in some way, I feel I must stand back and let him be his own person, making his own choices, and as we say often in this house; facing the consequences of those choices. Just like in real life. Both teachers mentioned here were wrong. My son had the capacity to learn to read, and he should never be labeled; low-functioning or any other category/box/level, etc. He is a living, thinking, feeling being- and worthy of being treated with respect.
*Marge is a trained and licensed Speech Pathologist who worked at a major University.
Photos of 3 of Nato’s creations. He does these himself, often consults me about color choices, then decides against my suggestions!!! The last is hanging on our front door.