Alaina with Guide to Good Health

At the National Down Syndrome Congress convention a few weeks ago Casey, Calvin, Lori and I attended Dr. Brian Chicoine and Dr. Dennis McGuire's five-hour workshop on promoting and maintaining health–of all kinds–in teens and adults with Down syndrome.

It was an inspiring day.  Drs. C&M have run The Adult Down Syndrome Center of Chicago for 20 years.  These gentlemen know Down syndrome inside and out, and the love, compassion, and respect for those they work with at the center, and for their families, shines through bright and clear.  Plus, they're very funny.

Dr. Chicoine and McGuire are authors of two MUST HAVE books for any family with a child with Down syndrome–no matter the age:  Mental Wellness in Adults with Down Syndrome, and The Guide to Good Health in Teens and Adults with Down Syndrome, both available from Woodbine Press.

Until about 30 years ago, the focus on “rehabilitating” people with disabilities zeroed in on either keeping them completely out of sight, or trying to mold them into seeming as “normal” as possible so as do cause minimal discomfort for the population at large.

Thus people with autism were badgered to look people in the eye, deaf people were prohibited from using sign language to communicate, blind people had to concentrate on looking like they could see, and people with Down syndrome were pestered to leave off the self-talk, get with the flow, and for God's sake–stop hugging everybody you see!

How wonderful to encounter two professionals who encourage us to accept our kids for who they are, to work with their differences and not against, and to do so with love and appreciation for their gifts.  As evidence, I paraphrase Dr. McGuire's piece “What Would Happen if People with Down Syndrome Ruled the World?” along with experiences we've had at Down Home Ranch.

If people with Down syndrome ruled the world…

Affection, hugging and caring for others would make a big comeback. [Very true.  When our Ranchers spy Jerry or me at Wal-Mart, they come thundering down the aisle with arms wide open and huge grins on their faces to greet us even if they saw us maybe…two hours ago.]

People would be refreshingly honest and genuine.

As the expression goes, “what you see is what you get.”  [Oh yes!  When Bishop McCarthy told Kelly several years ago, “Kelly, you are such a wonderful girl,” Kelly replied simply, “Yes. I am.”]

Stuffy high society would not do well.

However, BIG dress up dances would flourish, …and can they dance!  [Dr. McGuire suggests that weddings are especially popular among people with Down syndrome because everything they love is there: celebration, romance, dancing, license to hug anybody you see, and food!]

People engaged in self talk would be considered thoughtful and creative.  Self talk rooms would be reserved in offices and libraries to encourage this practice.

[When Kelly is trying to resolve a dilemma–say whether to spend the weekend with Mom and Dad or to stay at the Ranch and hang out with her buddies, she will go to her room and have a spirited conversation with herself.  You'd swear there were at least two people in there debating the pros and cons of each side, plus maybe a referee in the bargain!  As for me, I just sit and stare into space as I play ping-pong in my head–same thing, different modus operandi.]

Order and structure would rule.

We have heard that people with Down syndrome are stubborn and compulsive. … They can get stuck on behaviors that can drive family members a little crazy. …

[Dr. McGuire refers to this tendency as The Groove.  Now doesn't that sound better already than “obsessive/compulsive”!?  The Groove could make the world a better place where all the trains and planes would run on time! And more:]

• Schedules and calendars would be followed
• Lunch would be at 12:00. Dinner at 6:00
• Work time would be work time and vacation time would be vacation time 
• People would be expected to keep their promises
• Last minute changes would be strongly discouraged (if not considered rude and offensive)
• Places would be neat, clean, and organized (not just bedrooms, but cities countries, the whole world) [This organization Dr. McGuire speaks of is not always immediately obvious, especially in the bedroom, but you just try and move one object in it without the owner knowing it and you'll discover otherwise!]
• Lost and founds would go out of business [Kelly never forgets her belongings and leaves them behind in hotel rooms while Mom and Dad have been known to do so.]
• The “Grunge Look” would be out, way out. “Prep” would be very big.

There would be tolerance for:

• Repeating the same phrase or question over, and over, and over, and…
• Use of the terms “fun” and “cleaning” in the same sentence
• Closing doors and cabinets left open by others, even in their own houses
• Arranging things so they are “just so” [whether they're yours or not]

[Dr. McGuire has many other observations, leading to conclusions such as:

• The “Rat Race” would be supplanted by “The Mosey”
• There would be no futher need to pay gurus to teach us to live in the “here and now”
• Stopping to smell the roses would be a national pasttime
• Work would be revered, no matter what kind, from doing dishes to rocket science, and doing it right would matter much more than doing it fast
• Everybody who wanted a job, could get a job and would do it well (except for when “Wheel of Fortune” is on TV)
• Weather would be the only news necessary
• All the bad news would go away.  Murder, war, and mayhem would go way down, though there would probably be more McDonalds built.
• No one would ever claim to be unable to draw or paint
• Acting and theatrical arts would be encouraged for all
• Elvis, The Beatles, and the Beach Boys would still be number 1
• “Grease” “Footloose” and “The Sound of Music” would be the only musicals on Broadway
• Richard Simmons and John Travolta would be national heroes
• Fun oldies like “I Love Lucy”, “Bonanza”, and “Happy Days” would dominate cable programming [I had a senior moment and couldn't remember the name of “Bonanza;”  I found Travis and asked, “Travis, what's this?” and hummed the theme song; BONANZA!]
• We would only need about 10 movies total, which we would watch over and over
• We would be allowed to talk out loud during the movie about what happens next
• We would not need secret service agents or spies
• There would be no terrorists; everybody would know that being a terrorist is just plain inappropriate!

Many mistakes can be avoided in childhood that would not express until teen or adult years, and Drs. Chicoine and McGuire lay them all out in their books. 

For example, Kelly had a favorite movie, starting at about age 7, The Watcher in the Woods.  I found it suspenseful, but tame compared to movies made today–no gore, very little in the way of violence.  She watched it several times a week with no problems, but when she was 12 all of a sudden she developed a love/hate relationship with it.  She would ask for it in the morning and insist I get rid of it forever in the evening as night came on.  Now, at 27, she still asks about it and expresses fear about it.  We'd have been better off with no movies with any fright factor whatever, and that's pretty doable with younger kids.