We left Iowa for Montana at the end of August. We’re now living in our own, small, home. Small means you have to be more ruthless about your belongings. I’m thinking of adding a few shelves on the living room wall and then rotating my art and tchatchkas [knick-knacks] so to have something new to look at, to inspire. It’s that or get rid of very dear art and objects. Not ready to clear out any more at this time. I like the notion I’ve come up with– at least for now.

The pine tree I planted in Iowa 4-5 years ago, survived a rough winter.

The pine tree I planted in Iowa 4-5 years ago.

Living in a motel for a week was … interesting. It was very well run. The people all kind, friendly, and dealt well with each of us; Nato and I. We’ve been in our new home for a bit over a month. We can look out the living room picture window and stare at the mountains, the sky, the clouds. When we drive out and down the hill or just around town, the mountains guarding our city are ever present, majestic, intriguing, timeless. I still wake up, look outside and feel surprised to remember we’re in Montana.

Looks like getting services for Nato will become my next occupation. Becoming involved on a local level; talking to people, starting a parent support group, finding folks who will take a little time to include Nate in their lives for a dinner or an activity. Then there is the state level; lobbying our legislature to become informed how their policies affect adults with disabilities who often cannot work at all, or who need a job coach and/or job slicing in order to work. (I just made up the phrase; job slicing, because there actually is one to denote taking a job and breaking it down into components and then hiring a disabled adult to do one component. I cannot remember the new technical term for what I’ve described, but it does exist!)

A Special Olympian winner - and a sweetheart.

A Special Olympian winner – and a sweetheart.

Those of you in the Y today, or in our neighborhood a bit later, who heard my son having a loud time… I apologize, but could you please not look so shocked? He does the best he can – but he’s not made to live an idle life. There’s only so much sitting he can do before he becomes frustrated. And the great state of Montana is ruled by legislators who have taken a very, VERY paternalistic attitude toward developmentally disabled adults. If they are in a safe place, even living with elderly parents, then they don’t need any public services such as a life skills coach, job training and support, or even transportation to social events in the community.

Imagine if you couldn’t drive, couldn’t read, couldn’t handle money [because you don’t understand any numbers/math], perhaps couldn’t call someone- a friend or family member on the phone because you can’t operate the dial pad… and there is nothing for you to do all day but sit in front of a television set? It gets old and boring very quickly. And the person doing the sitting vegetates. There’s no stimulation, nothing to get excited about, practically no reason to get up each day. That is what I hope to change.

Meanwhile I’m grateful for our new mountain home, and the friendly folks we’ve met so far, and the many more we hope to meet, work with, and get to know as friends and neighbors and co-workers. So, as I said in the title, life is weird, ornery [the temper tantrums] and beautiful. And bittersweet, as we both miss our midwest friends; Katie and family, Peggy and family, Leo, Niki [Nate’s college friend and all her buddies who became N’s buddies too], neighbors, and friendly acquaintances. All Nate’s friends at Hand-in-Hand. We miss you so much.

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.

 

 

Women; mothers, workers, blue collar, white collar, unemployed, underemployed, mothers- read Mary Elizabeth’s piece on Salon.  And let’s talk about what it means to be a mother, if that’s your choice, okay?

I love the way Mary Eliz. looks at both sides of the question: What will women do when they grow up? Here’s what I did. I dropped out of college, (having no long vision or guidance). I went to work full time in and out of my chosen field. I married after a too-short acquaintance, determined to make a good life. Adult life was a complete mystery to me, but I found out I loved to research and read, and I could learn as I went.  I had children; 4 in the early years, one more later.

“People shop for a bathing suit with more care than they do a husband or wife. The rules are the same. Look for something you’ll feel comfortable wearing. Allow for room to grow.”

Here’s what you don’t know about me from the above statements. I was dedicated to children, working with disabled children beginning when I was 13 years old. I was an ardent feminist and in college led women’s Consciousness-Raising groups (that was the BIG buzz phrase then). And I believed both in being a conscious woman knowing my options, and in being a loving, guiding mother. I believed I had the potential to be an amazing mother, and my own report card states that’s what I’ve been for a very long time.

“Have you any idea how many kids it takes to turn off one light in the kitchen? Three. It takes one to say, “What light?” and two more to say, “I didn’t turn it on.” “

Our living room extension was a preschool. I made my own bread for the family and I cooked up play dough on a regular basis, letting the children help with the kneading of it, and choosing the colors. Having a child with a disability became a challenge to learn everything I could about his disability and his rights and my responsibilities. I was an informed and active advocate during his school years, and in fact was hired by a school system as a paid advocate for other parents with children in Special Education. I made learning tools for my son’s use and then for other families. Our 4 children were in a 7 year age range. I worked harder at being a parent of young children than many do on their job sites in a regular workday.

“I take a very practical view of raising children. I put a sign in each of their rooms: “Checkout Time is 18 years.” “

Card4Shmz

This life was exactly what I wanted. And I believe I achieved what I set out to accomplish. My daughters are strong, capable, intelligent and caring. My sons are all they should be and sensitive and caring too. My youngest son worked as a paid care-giver for his older brother during college years. And when there are problems at home I know we can call one of his siblings who will “talk him down” very effectively from his stubborn place.

Even a messy divorce situation gave me the opportunity to learn and grow as a person/woman/mother. I believe very strongly that there are many, many options for women, as many options as there are people. We – society- need to accept the options, support the choices, and above all provide assistance to parents who are raising the next generation. We Americans seem to have an appalling lack of knowledge of other countries’ values and effective strategies. We also don’t seem to value our mothers, our fathers, our elders, our children, our disabled people, our homeless people, our ill and mentally ill people… and on and on.

“Seize the moment. Remember all those women on the ‘Titanic’ who waved off the dessert cart.”

Yet I believe each of us can address these issues. One person can make a difference. Start a community dialogue. Find a group of people willing to engage in discussion to find solutions to issues in your community. And most of all; be kind to other parents, the best, the worst and the ones who are muddling through- because it truly is a job harder than any other on earth.

“Stop sweating the small stuff. Don’t worry about who doesn’t like you, who has more, or who’s doing what. Instead let’s cherish the relationships we have with those who do love us. Let’s think about what God has blessed us with. And what we are doing each day to promote ourselves mentally, physically, emotionally, as well as spiritually.  Life is too short to let it pass you by. We have one shot at this and then it’s gone.”

Thanks for listening. Quotes by Erma Bombeck who was an amazing social humorist, and who refused to be moved up to the top of the kidney donor list just because she was a well known published author and journalist. She died too soon.

Here’s a short video about Erma.