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 Nate's Hearther 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.]

"Centered" a work by Nate and his mom.

“Centered” a work by Nate and his mom.

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 InternNate's Decorationet 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.

 

 

Today I’m perplexed. I can’t find some supplies I need to finish a project that is really important to me. So I’m walking away – doing something else – putting off the search until later. This approach works for me. Instead I plunked myself down on the sofa, undoing some knitting for a commissioned piece. I enjoy  unravelling almost as much as knitting. Odd.
Unravelling

At times it is important to work through an issue in my head, rather than forge ahead without having figured it out completely and with the end in mind.   And is this how some people live their lives?      A very dear friend finds herself in a difficult situation, affecting every aspect of her life. All her years she lived in the moment – took a great deal for herself and her family and gave a great deal to all; family, friends, community. Yet never could she focus on life beyond the home she cherished and all within and without that made up her world. She never could imagine the “what if’s” happening to her and how it might change her world. Her life now is unsteady, a crumbling of every security she ever had, and an undoing of her world she finds difficult to comprehend, let alone adjust to and perhaps find a different bit of happiness within it.

I have 2 friends who have each lived through their child’s death. In addition, my grandmother lived 2 years past my father’s death; not happily, not at peace. It is unimaginable to me. It is an unplanned and un-looked for event to give every parent shivers if they think on it. And yet we do live through the worst, in one way or another. Or we can die.

Living past cancer, living past the death of a child, living past natural and unnatural disasters. The things that undo us are the things that can create the openings for the most growth – or so I believe.

You don’t get to choose how you’re going to die. Or when.
You can only decide how you’re going to live.  Now.
-Joan Baez

I’m going to continue living both now and with a plan for tomorrow, and with some nostalgia and twinges for the past. Continue writing my stories, knitting together the elements of my life – and continue trying to do what my body – mind- spirit require for my fulfillment.       I am choosing how I live.

And I hope for you – that you both knit and unravel – choosing to include both the moment and some plans for the “what if’s” that can and for many, do occur to change our lives.

Tuesday,
I’ve been trying to figure out why the blaring headlines, and copious news stories have made me feel depressed. Finally… finally, an article on Huffington Post by Pamela Gerloff that made me feel good about my reaction to the self-congratulatory goings on over the news of the murder of O. binL.
And am I the only one asking why there was no trial? Just brutal murder? Yes, I know he murdered first, even if by proxy. So much infamy carried out by humans under the influence of strong emotions. One person who commented asked: “What is it in folks that they so desperatel­y need to feel like they are better than someone else?” Another wrote that we human beings were allowed to occasionally give in to baser instincts. To which I say; “Oh really?!!!”
One of the most difficult tasks I’ve had to learn in last years has been accepting my role as parent to my disabled son, when I am long past having children at home, long past having the patience I had when younger, and long yearning for a quiet life by myself. I have come to peace with my life as it is, and also realize that it is not that adversity makes us stronger, it is using our cognition that provides us with the reasoning and sense to learn and apply new learning.
So I circle back to where I started in this post. Some people who commented on the article cited above, mentioned public response to Mussolini and Hitler as either representative of the human need or desire for revenge, or the wild reaction to being free of tyrants. We Jews just celebrated Holocaust remembrance day, and a speaker said a U.S. soldier liberating the death camps mentioned the incredible smell of incinerated bodies that hung like fog over the camp he entered. And that all his life that smell remained in him. So… memory, cognition, and the ability to sort through our feelings and MAKE CHOICES. Gerloff in the article says this; Do we want to become a species that embodies peace? If that is what we want, then we need to start now to examine our own hearts and actions, and begin to consciously evolve in that direction. We could start by not celebrating the killing of another.”
Pictured here: 2 new cards using recycled card stock and usual range of collage items.