coloring outside the lines

"I Do" Meets Down Syndrome

For those of us with children with disabilities, Time magazine in its July 24, 2006 edition has just printed the feel good story of the summer, "A Very Special Wedding."

Two very charming and attractive young persons with Down Syndrome, Carolyn Bergeron, 29, and Sujeet Desai, 25, have married declaring "Love can't be stopped by Down syndrome."

A beautiful photo essay can be accessed at the Time.com site showing the details of their two ceremonies honoring their dual faiths, Hindu and United Lutheran Presbyterian.

Barbie and Ken Go Dancing

The gold standard of making it at the Sheltered Workshop and at the Special Olympics Dinner Dance is to have a boyfriend or girlfriend.  This is the greatly desired life achievement, seldom obtained and often for life if finally realized. It is against a room full of hopefulness and longing that at the last possible moment, as we shall call them, Barbie and Ken arrived.

Both of these young adults have Down Syndrome.  Their perfectly turned out, overtly sexual appearance playing against their characteristic Downs physical attributes gives them the appearance of caricatures of what we all might have been had we only read the glossy magazines more carefully and tried harder. They have studied the attributes of post-pubescent sexuality so carefully that I have the feeling I am so much less than I was meant to be. As they move with perfectly studied coupledom across the room to their seats, you can feel the oxygen being sucked away from the rest of us and the energy moving into their quadrant of the room.  It is as if Brad Pitt and Angelina Jolie had just dropped into the neighborhood bistro.

Their openly sexual appearance sets them apart.  It is clear they have made it to a land the rest of the group can only yearn for and aspire to. Yet this great achievement is not without its costs.  They have a tenuous hold on the world of the normal.  Both have managed to find marginal employment in non-handicapped settings. They exchanged rings at Christmas. Late in the evening he takes the microphone and does a karaoke performance that has me laughing and cheering in delight.  He does it perfectly, a rather Elvis like body-delivery, stripping his jacket off and tossing it to his Barbie, waiting ever faithfully in her short black leather mini-skirt, cheerleader smile firmly in place as she catches his jacket, one handed, and beams.

They leave and the energy and the oxygen leave with them.  I gather up my son and we head out into the night. I wonder if  I should have more actively sought this life for my son.  If the trade off would have been worth it. 

Can My Son Marry Your Daughter

So much of our lives is about our sexuality. You would think it would be easy to find a nice girl for my son.  He's attractive, has a trust fund left to him by his father, is very well mannered, is employed full time and loves sports and social activities.

Interests and activities

• dancing (has taken dance class once a week for about 8 years)
• downhill skiing
• horseback riding
• track
• boccie
• karate (1st degree red belt)
• enjoys eating out and likes a wide variety of restaurants
• movies and plays
• stage events and concerts
• gallery shows (is a good digital photographer)
• light social drinker
• non-smoker

As with most Internet dating resumes, we have failed to mention a few attributes that may give you pause.  He has Down Syndrome and is labeled mildly mentally retarded, and his full-time employment pays approximately $4,000 per year. If he earns much more than that he will lose his government health insurance.

On the plus side I can assure you that unlike some of the wealthy young men you have been eying for your daughter, he has not had any runs ins with the law nor spent any evenings locked in the bathroom with a few of his friends and a hired stripper, assuming of course, that those sorts of things really happen. I know he has not done this because he can't go anywhere without a caretaker, so I would have known.  He has the sort of caretakers who would rat him out.

The one girl who he took an interest in and who reciprocated is not available.  Her father doesn't like my son. Then again, as the girl's mother says. "Don't feel bad.  Her father doesn't like anybody."

Physical Attraction

My horoscope for today says:

ARIES (March 21-April 19)

Social Studies experts say people usually decide within two seconds whether they are attracted or repelled by a person.  You're so psychic today, you pretty much know before you even lay eyes on the other person.

I can tell you're cute even before you read this!  Just leave me your phone number in "Comments." 

Mismatch

I find it impossible to be sexually attracted to a man who makes his own gourmet ice cream.  He felt the proportion of whipping cream to half and half was slightly off in his last batch and that it needed somewhat more fruit flavoring. Elderberry.

Wedding Guest

It couldn't be nicer.  Two young people, together with their families, inviting me to join them at the County Club to celebrate their marriage, followed by dinner and dancing. They were kind enough to include the option of my bringing a guest.  I should be ecstatic.  Instead, I have the hollow feeling in the pit of my stomach usually reserved for getting a pap smear or a root canal.

You know how when you go to the funeral home and the deceased is really old and suffered or was in a tragic accident and they have closed the lid and put a nice photograph on top of the coffin. That's what I want to do about this wedding.  No, not die.  Just have a nice place setting where I should be sitting with an attractive photograph of me in a nice silver frame sitting on the service plate, sending the message that I would have been there if at all possible and my thoughts are with them.

Instead I have considered the guest option.  We are too small a town to have an escort service.  I would like to rent a suitable wedding guest.  I talked to an unknown emailer who had solicited something other than a wedding invite, in hopes that he might fill the guest slot.  He was by his own admission a Brooks Brothers dresser with an Ivy League education.  He also sounds suspiciously like he has ADD and it doesn't look like taking a stranger is going to work out.

This leaves the tried and true options of the somewhat significant other, with whom my relationship is currently strained to the max and seeing someone, certainly not me, signing up for a lifetime commitment might put me seriously over the edge.  Or I could take my son.but for once I am considering the fact that other people who have arrived dressed to the nines may not want to make the effort to talk to John or eat with someone with Mental Retardation.  And for once I don't have the energy to smooth his path, translate, prompt and make it all work out.

I have ordered the bow tie shoes to goes with a preexisting outfit. I think if I go early I can get parking where I can leave early. I am going to be a grownup.  I am going to go alone, be pleasant. look acceptable and do my duty as a wedding guest. Sometimes, no matter how nice the occasion, that's the best you can do.

Making Connections

We all want to make those vitally important human connections, the ones that make us look forward to tomorrow and tomorrow and the day after that. Forests are decimated writing about how to achieve this illusive goal and certainly, in the disability community no less than in the world at large, much thought and many papers are written extolling the virtues of an everyday life for one and all.

My suggestions is that an everyday life is forged out of real interests and then letting things happen. Yesterday was an everyday day that had a lot of simple pleasure in it. It was forged out of routine events and a special invitation.

The routine stuff was going to Big Lots because we were out of some cleaning supplies and English Breakfast Tea.  It also  afforded us a chance to check out the frame section and scrap booking materials.  As luck would have it, scrap booking supplies were drastically reduced in price and we had a good time picking up a some interesting textured corners for pictures.  These are earmarked for some note cards we are making for John's gallery show. Along the way, we ran into a woman in John's Karate class.   She told us the classroom had just been air conditioned. None of this is earth shaking, but these little exchanges help people form ties, express their shared interests.

After lunch we drove to a nearby farm and visited four pens of baby pigs. This was a great photo opportunity and a special invitation.  It was an absolutely enjoyable hour.  The mothers each had about a dozen little pigs all of whom were busy, at various times, breast feeding. The barn was cool, dusky and quiet in the oppressive afternoon heat.  We were psychologically a million miles from town life and our world that is filled with too many commercial things. We drove back to town refreshed and recharged.

The invitation to go take pig pictures came from a long chain of events leading up to our involvement in a race for State Representative last fall.  While working on this campaign we were invited to the above farm to assemble political yard signs.  John took a picture of the owner, still in his field clothes, putting together signs on the worn table in the farmhouse kitchen. It's a wonderful picture and we recently asked for permission to have it included in John's upcoming show.  While discussing that, we were invited to go back to the farm and see the baby pigs. "You know," the follow said, "I like that young man of yours. Bring him up to the farm and have him take some pictures of the baby pigs.  I think he'd like that."

Book Club

Illustration from  Salon article on Ian McEwan

Who can explain the love of books that has existed for as long as I can remember between  me, the solitary, over studious, only child and the serendipitous find of a kindred spirit, who seemingly has written for my pleasure alone,putting down thoughts I have had but will never express so well.

It is only in the last four years that I have given up my love of finding the perfect read for a book club, which has determined my reading to a much larger degree than I had anticipated.  For the first time in my life I have propped open tired eyes, willing them to at least scan a few more pages, to not close until we had at least reached the end of the chapter.

I had not realized several important things about a book club.  Ostensibly a book club is about coming together to share  thoughts on a communal read. In truth, it has been only in some token fashion about the literature.  Book clubs run on their stomachs. This small army of readers willingly subjecting themselves to the torments of the damned, in order to gather in each others homes to share delicate tidbits of gossip, their innermost secrets, strong coffee and sugary delights. The shared book is the tenuous thread that holds the social umbilical cord together.

Book club is good for me in the same way that a diet and exercise is good for me. Or a college education.  Or sticking to a budget. At the end of four years I feel a certain kinship with the other three women, forged through the experience of reading. I feel a certain sense of attainment that I have now read 50 books that have made me a better educated or, at least, a better read woman.

Book club has finally admitted defeat on the subject of summer meetings.  And so, like a young girl sneaking off to the arms of a waiting lover, I eagerly started reading "Saturday" by Ian McEwan. It is, I decided in the wee hours this morning, closing the book with a contented sigh, the perfect contemporary novel.

Mother's Day

Happy Mother's Day!

Keep Dancing

I learned a lot about men, my son in particular, and relationships at the Special Olympics Dinner and Dance.  I have Rose seated at my right, unusually quiet and focused, her jaw set with a certain determination and a gleam in her eye. JOHN and I are seated together,separating her and my son, John.

I see the young lady John used to go out to dinner with come in with her mother.  They sit directly across from us, but one table over.  This gives us time to consider loves lost and the error of our ways. The young lady, who I like so very much and whose passage into relational oblivion still troubles me, comes over to our table to say hello.  Her mother stays at their table, keeping a sharp eye on all of us.

After dinner and after the presentation of awards, dancing begins. I wonder how all of this is going to work out.  It is clear now that Rose has designs on my son's attention.  John starts the evening dancing with his former friend, while I watch, regretting that there is no reclaiming what has been lost. Her father will never let the two of them resume their friendship. Unlike other young people, they have no opportunity to pursue the relationship outside of parental eyesight, since neither of them can go anywhere on their own.

John dances with one, then the other, then Teanna, another friend asserts herself and claims a dance.  I watch John and marvel.  He adroitly joins a gyrating group, moves to another, joins a partner briefly and moves on. A slow dance begins and Rose positions herself next to John, waiting for his attention.  Instead, Teanna, gets the nod.  I see Rose watching them, then realize she is wiping away tears as her quarry eludes her.  Teanna, seeing Rose's unhappiness and tear streaked cheeks, generously walks away and lets John dance with Rose.  Rose presses herself against my son, becoming human wallpaper.

John skates on relational thin ice.  No one get as much of his attention as they would like and no one is neglected.  He tirelessly dances the night away, moving from line to line, group to group, person to person.  By the end of the evening he is fading fast and his shirt is wet from his exertions. I signal it's time to leave and he, without any dissent, dances out the door and we walk out into the cool night. I realize then that John has figured what all men seem to instinctively know; i.e, a body in motion is not a body in captivity.