{"id":322,"date":"2010-01-17T22:50:00","date_gmt":"2010-01-17T22:50:00","guid":{"rendered":"https:\/\/dhr.tiltedchair.co\/2010\/01\/17\/that-extra-chromosome\/"},"modified":"2010-01-17T22:50:00","modified_gmt":"2010-01-17T22:50:00","slug":"that-extra-chromosome","status":"publish","type":"post","link":"https:\/\/dhr.tiltedchair.co\/?p=322","title":{"rendered":"That Extra Chromosome!"},"content":{"rendered":"
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Kelly’s 25th birthday party in the Pavilion with all her buddies.<\/em><\/div>\n

On a recent trip to Kansas, at about mile #569 a voice chirps from the back seat:<\/p>\n

\u201cMom!\u201d<\/p>\n

\u201cWhat, Kelly?\u201d<\/p>\n

\u201cWhat does that extra chromo, chromso, chromodome do?\u201d<\/p>\n

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                                  Above: Karyotype Trisomy 21<\/a><\/em><\/p>\n

She was talking of course, about the extra 21st chromosome that causes Down Syndrome. Our talks about her disability had advanced into genetics (though I must admit my level of understanding is about on a par with hers.)
                                                                  
It\u2019s been a long journey.                                     <\/em><\/p>\n

As a very young child Kelly blended in seamlessly with the other kids at her Montessori school. <\/p>\n

Later on, in public school, that innocent time was lost. Some classmates were kind, most indifferent, and some problematic. <\/p>\n

Kelly handled the schoolwork itself well up until fourth grade, when the curriculum became more abstract and she began to fall behind.<\/p>\n

Then one day her social studies teacher, wanting to pass on some good news in a year when it was becoming scarce, told me a story about what happened in the classroom that day. <\/p>\n

The students had formed two lines for a history bee. The subject was life in Texas during the 1800s, and the question that fell to Kelly was \u201cWhat did the cowboys take to Kansas on the Chisholm Trail?\u201d<\/p>\n

When the teacher read the question, she said that Kelly\u2019s team began to moan and groan, thinking she wouldn\u2019t know the answer and they would lose the bee. But Kelly hung her head and whispered shyly \u201cheifers.\u201d<\/p>\n

Most of the kids on her team were upset, thinking she\u2019d got it wrong. But a few ranchers\u2019 kids started saying, \u201cKelly got it right! A heifer\u2019s a cow. Cows are what they took. We win!\u201d The teacher agreed.<\/p>\n

A triumph, yes, but bittersweet at best, and the story itself enough to convince Jerry and me it was time to get Kelly into an educational setting where she could enjoy more success than failure. The next year we moved her into the Life Skills classroom at the middle school. <\/p>\n

It was a good placement, and she did well there. And confronted with a wide array of disabilities in her new classmates, Kelly became more aware of her own. <\/p>\n

We\u2019d never hidden the fact that she had a disability, and its name was Down syndrome, but she\u2019d never been that interested. Then one day she got out her Where’s Chimpy<\/a> book and stared at the pictures of the little girl who searched for her stuffed chimpanzee. <\/p>\n

\u201cShe looks like me,\u201d said Kelly.<\/p>\n

\u201cShe has Down syndrome, too,\u201d I said.<\/p>\n

\u201cOh,\u201d said Kelly.<\/p>\n

So on and off we talked about it, and its causes, and that pesky extra chromosome, and although once during high school she declared hotly, \u201cI don\u2019t LIKE Down syndrome!\u201d these days she seems pretty much at peace with it. <\/p>\n

Maybe that\u2019s because now most of her good buddies at the Ranch and off have it, too. <\/p>\n

At Down Home Ranch<\/a> we\u2019re routinely accused of not \u201cgetting it\u201d when it comes to our effort to build a community in which our daughter can enjoy a good life among friends with similar interests and abilities. The academics and agency people feel people with Down syndrome and other intellectual disabilities should live independent lives in the city.<\/p>\n

Well, we checked out living options for adults with disabilities when Kelly was a toddler. We didn\u2019t like what we saw. The people seemed lonely, often living with people they disliked or found threatening, having limited opportunities to go places and do things. <\/p>\n

We wondered, \u201cWhere will Kelly\u2019s circle of friends come from? Who will invite Kelly out for pizza and a movie?\u201d <\/p>\n

Friends of kids with Downs in high school reported they got lots of high fives in the hallway, but no invitations or offers of friendship, unless they were part of some organized (and always short-lived) project. After high school, most kids wound up sitting around the house with nothing to do, with a \u201ctagalong life.\u201d <\/p>\n

You know, tagging along when others went about their errands or social life.  “Hey, Kelly.  I’m going to the library.  Want to come along?”<\/em><\/p>\n

We thought our daughter deserved her own life, with the chance to make real choices, and earn money, and interact daily with a group large enough that she could pick her own friends.<\/p>\n

That\u2019s why we founded the Ranch, and it works.  If it stops working for Kelly or other Ranchers, we’ll help them find a different model, but for most, right now they are able to enjoy their young adulthood like other young adults–learning to work, get along with peers, and have a rich social life.<\/p>\n","protected":false},"excerpt":{"rendered":"

Kelly’s 25th birthday party in the Pavilion with all her buddies. On a recent trip to Kansas, at about mile #569 a voice chirps from the back seat: \u201cMom!\u201d \u201cWhat, Kelly?\u201d \u201cWhat does that extra chromo, chromso, chromodome do?\u201d                                   Above: Karyotype Trisomy 21 She was talking of course, about the extra 21st chromosome that…<\/p>\n","protected":false},"author":7,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[40,185,13,8,259,14],"tags":[],"class_list":["post-322","post","type-post","status-publish","format-standard","hentry","category-community-life","category-coping-skills","category-down-home-ranch","category-down-syndrome","category-special-education","category-trisomy-21"],"_links":{"self":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/322","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=322"}],"version-history":[{"count":0,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/322\/revisions"}],"wp:attachment":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=322"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=322"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=322"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}