The Teen Scene

By Maureen Bursey

Living with a child with Down syndrome has been compared to riding on a roller coaster. In our family, the early teen years for our child have been more like the Coney Island Special. However, I think it’s more about adolescence than Down syndrome. The teenage years can be tough sometimes, and when they are, they’re tough on everyone.

Our daughter reached adolescence at the age of eleven, after a turbulent year of emotional highs and lows. Although I’d had lots of child-rearing practice, our sons were hoop-shooting, water-squirting, worm-farm-type fellows. Their mood swings could be more aptly called "food" swings and, as long as there was cereal, happiness prevailed.

In no way did this prepare us for our daughter’s early entry into adolescence. Neither my husband nor myself was psychologically ready for the change. After all, she is our baby; she is petite, blonde, and feminine; and she is quite dependent on us. We were taken unawares when she started talking about having a baby, about boyfriends, and about getting married. I nearly choked on my tongue the first time she asked me if I would come into the delivery room with her.

Thankfully, she had already been prepared for the physical changes of adolescence. It took us a while to discover how to help her with those mood swings. She was a bit worried about it, too. "It’s okay, Mom," she said at one point. "It’s just that I feel this way inside that makes me act this way outside. It’s just a face [phase]."

In our daughter’s case, we decided to check things out with her pediatrician, who discovered two medical situations that were creating a rougher-than-usual transition. One was her thyroid gland, which now tested as borderline underactive. The other was an estrogen imbalance. While these conditions are not completely "fixed," medication has helped the estrogen imbalance and we monitor thyroxin levels every six months.

Other issues became more apparent once the medical concerns were taken care of. Like identity issues. Like the fact that Erinn has Down syndrome. Her disability was something she needed to come to grips with. She didn’t enjoy being around other children who had disabilities and didn’t particularly like being different herself. One day, she casually remarked to her older brother, "You know, I’m not the only one around here with special needs." She insisted that she was going be his special needs worker when she grew up and, despite Matthew’s attempts to explain, she was not going to be deterred by the facts.

At least she’s setting goals on those days. She has tried another tack, where she asks me to fetch her something. When I tell her to get it for herself, she is indignant. "You HAVE to get it for me. I have Down syndrome, y’know." Self-respect is not easily gained by anyone, especially a young teen with a disability, but it’s important work.

As previously mentioned, sexuality has been an ongoing issue these last few years as well. Because we have a good relationship, she confides in me about her latest crush, the changes in her body, the boy she hopes to marry. Her dreams are no different from my adolescent dreams. However, we have been more specific than my parents ever were. We have set very clear limits about what is and is not acceptable. When people ask her if she likes babies, she will often repeat word-for-word what we have told her. "Yes, but my mom says I can’t have a baby until I’m 24 and not until I’m married." A conversation stopper par excellence.

Despite the feeling that our daughter falls somewhere between two and ninety-one on the age spectrum, most of the time she is thirteen. She adores the Spice Girls, especially Sporty. She gets a little dreamy when she listens to the Backstreet Boys too loud. She likes name-brand running shoes and baggy sweaters. Her speech is currently peppered with "whatevers" and "so’s," which have taken root like horseradish. (Seinfeld’s mother must have torn her hair out.)

This job of parenting has always been quite a ride. We try to set limits with consequences, we have (hopefully) reasonable expectations, and we have plenty of setbacks. With luck and planning, the next six or seven years will be busy and productive ones. Her energy is channeled into sports (basketball and soccer) and music (with Noreen, her favourite music therapist) and hopefully that will offset some of life’s other tougher stuff.

It’s with mixed feelings that we approach her entry in high school in the fall, but one thing we know for sure: A roller coaster ride doesn’t last forever; we want to enjoy it while it lasts.

(Maureen Bursey is a freelance writer living in Oakville, Ontario.)