Uneven Terrain: 12-19-11

Ducks In A Row: Our daughter had a superb week, all ducks in a row, clear, cool weather including a day of Christmas shopping with mom at the mall, followed by an unexpected outing with both parental members to the Yale Museum of Art yesterday. Her apartment-mate was under the weather, which left our daughter with the option of staying in or hanging out with us. She chose us and delighted in the early American portrait paintings of ladies in ribboned, indoor bonnets (aka mob-caps) and was particularly intrigued by a painting of a view from the World Trade Center prior to 9/11. “I am going to tell Ms. Shannon about that when I see her at the DSO tomorrow.”

Ten Pounds: One of the goals of her new adult life was to shed the extra ten pounds packed on to her small frame the last two years at boarding school and she did it! An amazing accomplishment recommended by her physician and facilitated by her residential staff. The young lady is very proud of this achievement, twirling around in the petite section of Macy’s to reveal her svelte frame, and I am very relieved. Portion control seems to be key in addition to low sodium and unprocessed foods. Hoorah. The Ability Beyond Disability staff: when they set a goal, they mean it. Very impressed.

Not Within Reach: What still strikes hard at this special needs parent are the jolting reminders of disability with basic concepts. Our daughter informed me that her plaid wool jacket had a tear in the armhole seam and needed repair. She attributed the tear to her weight loss. Excuse me? Yes, “My jacket is too tight because I lost weight.” Without attempting to replicate our conversation, I wish to convey that we had a rather lengthy discourse on how losing weight should have made the jacket looser rather than the opposite, hence reducing the likelihood of a tear in the seam. This dialogue matched many such excursions into wardrobe confusion. Shoes that are too small are often too big. A young man who is short in stature is “shorter than me.” He is not. The jacket is ripped in the seam, but the culprit appears to be the hoodie she wore under it this Fall, rendering it tight indeed, weight loss aside.

Analog Watch: Does anyone really know what an analog watch means? I do now. “A clock or a watch that represents positions on a timepiece with dials” or “of a time piece having minute and hour hands.” Such was the holiday gift our daughter received from her cousin. The watch is cool with a big round face, purple in color with roman numerals marking the hours. Not only non-digital but also non numerical. Oops. Here is another non-computing arena for our daughter. What is the neurology of her brain, this uneven terrain that can absorb fountains of information and apply it not as an idiot savant but with meaning and useful application, yet struggles to distinguish short and tall, causal relationships of less and more, half a cup, time, money? Who can grasp historical significance in the story of Anne Frank and yet read fifty-nine dollars and ninety-nine cents as fifteen nine nine, not a typo. These lacunae of knowledge are characteristic of the category of life our daughter occupies, where deep gaps of understanding render cooking (recipe measurements), budgeting, and all matter of spatial correspondence outside of her avenues of “mastery”, so far and for so long, despite hours of IEP protocols: “…shall count up to one hundred pennies…”

Uneven Terrain: This is the uneven terrain of adult special needs. I am awed by our daughter’s literary achievements; reading and writing skills increase monthly. Vocabulary grows, conceptual awareness deepens. But the terrain that rests within her brain that eludes change, will that ever be different? Life is long. Much is possible. In the meantime, these needs and many others require that our daughter receive services to make her world safe. Fingers crossed, those services will always be available…to walk her across a street, help her make a hot meal, and figure out whether the shoe fits or not. If it fits, Voila, wear it.

©Jill Edelman, M.S.W., L.C.S.W. 2011

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