Quirky

After my shower, I walk across the bedroom to rummage through my jewelry box for a pair of earrings. I slip on a bracelet and fumble with the clasp on my watch, listening for familiar sounds from downstairs. I’m the only one home at the moment and the watch clasp isn’t cooperating and I can’t decide on earrings and it’s all taking too long. It bothers me that I can’t hear anything except for the TV show I’d turned on for Cliff earlier, so I abandon the watch and race down the stairs to check on him.

Jojo, our Springer Spaniel has decided to race down with me and I almost trip over him. I find Cliff sitting on the couch, quiet except for the tap-tap of his fingers on his headphones. I can faintly hear the song playing on his iPod as I get closer, a ballad too slow dance to.  I walk over and pretend-tickle him before I go back upstairs to finish dressing, and promise to be right back. I don't like to leave him alone for long; I don't know why, except that I've never outgrown the anxiety I've owned since he took his first breath. It's irrational, I know.

Silence is an uncommon sound around here, so I don’t trust it. Cliff has always talked and sang and laughed to himself from the time he was very young. When he isn’t talking to himself, he’s making raspberry sounds, knocking on a window or a cabinet door. It’s a quirky aspect to his personality, and hasn’t been a problem, at least not until recently. There is always noise where Cliff is concerned. In conversations with other parents of adult children with Down syndrome, I know that many of them have similar quirks, including self-talk.  

That afternoon before settling down to write, I gave myself ten minutes to waste time checking out an online store I liked, and there it was-- a slate blue tee shirt  with the word “Quirky” printed in bold black lettering in the middle of it. It was perfect for Cliff. The word’s playful connotation captures a side of him only those closest to us ever see.

But lately I’ve been wondering about some of the quirks. During a disastrous lunchtime visit to a restaurant several weeks ago, the self-talk took on an agitated affect. Cliff was so loud the people at the  tables nearby stared at us. His words weren’t making sense. When I got mad at him and told him to cut it out, he looked at me and said, “Stop it, no!” We left before we were finished our meals. It wasn’t the first time the agitated talking had taken place. It’s been a pretty regular occurrence at the grocery store and for awhile I chose to shop alone because it wasn't worth the aggravation. So my husband and I are left with questions. Is this new development a symptom of something serious? Have Cliff’s quirks become so pronounced they have gotten in the way of his ability to live a full life? What are we missing?

The truth is I have begun to worry about the questions a great deal.

The quirks we don’t worry about, like unrolling most or all of the toilet paper into the toilet, pumping out large volumes of foam soap onto his hands when he’s washing up, and pulling the Kleenex out of the box until it's empty, seem to be nothing other than a way to amuse himself.

Others are charming, even endearing. He enjoys slowly turning the pages of a magazine until he gets to the middle of it, for instance, only to start over again from the beginning. He dislikes showers so he takes baths, which I draw for him as if he’s Lord Grantham, and he wants to wear his terry cloth bathrobe afterwards even when it’s a hundred degrees. If there is an unattended plate of food or glass of juice in his path, the original owner is unlikely to come back to find it uneaten. He unties his shoe laces several times a day; he likes holding a yo-yo or Koosh ball while he dances to the music on his iPod, is afraid of cats and the dark, and won’t lie on his back at the doctor’s office. If he hasn’t seen you in awhile and sometimes even if he saw you five minutes ago, a hug can last upwards of a minute or two.

In the past two years, however, our family, our extended family, and the staff at his program have noticed an increase in both the frequency and the amplification of his self-talk. At times it can drown out the television, the car radio, and conversations in the next room.  These are red flags, particularly because Cliff’s self-talk has become an obstacle, both for his life and for ours. We have had to limit many of the activities we’ve always been able to enjoy with him. Quiet restaurants, concerts, plays, church services, friends’ homes, are crossed off the list of possible outings.  The more we tell him to use a quiet voice, the louder he gets. We finally figured out that he is not always capable of controlling it but if we react calmly he is better able to at least try. It is Tourette’s-like in its presentation, vocal tics with words and phrases from his limited vocabulary. He says the words he knows how to say, but they are never in proper context.

 

We're hoping for some answers in just a few days. Cliff and I will head over to the Massachusetts General Hospital Down syndrome Clinic at the end of the week. There are people there who will understand him. We’ll have a little adventure, he and I. Perhaps we’ll try out a new (preferably noisy) restaurant on the way. Maybe he’ll want to wear his new shirt, the one with the word Quirky written in bold black lettering in the middle of it.

I think that sometimes, if you can give a name to a problem, define and organize it, it ceases to overwhelm you. You begin to understand the bones of the thing, build the organs, blood, muscle and finally, the skin of it. When it stands where you can see it, it’s much easier to find the way around it.

 

To be continued…