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Summer 2002 Table of Contents
Versión Español de este artículo (Spanish Version)

What’s Next?

By Gayla Valle, Parent, Anchorage, Alaska Reprinted with permission from the SESA Newsletter, Spring 2002

All parents anticipate the stages of their children’s lives.  We look forward to many of them - first words, first steps, first day of school. 

Others we regard with foreboding - first tantrum, first overnight away from home, first signs of sexual maturity.  As the parent of two teenage sons, I didn’t look forward to these things - and I wasn’t prepared for them when they happened. 

My younger son, now 14, has Down syndrome.  When, in sixth grade, the unmistakable signs of puberty became apparent, I was surprised.  I guess I thought that, with Down syndrome, walking, talking, and many other developmental tasks are delayed...wouldn’t puberty be delayed too?  Wasn’t it supposed to happen later - much later? Like maybe at age 21?  It seemed so unfair, but puberty was right on schedule!  In fact, for once, he was at the head of his class, but in a way I wasn’t prepared to deal with. 

How do you communicate these important realities to a kid who has next-to-no speech?  How do you ensure his safety, and the safety of others?  How do you help him find a healthy and appropriate way to deal with these confusing feelings?  How do you deal with your own feelings about him growing up, becoming sexually mature, moving away from you and into adulthood?  How can you get your school to help? 

Like many other challenges we have faced, you start talking to the people you know who you think can help.  You start reading.  You start asking questions.  You start looking at what you’ve done already to lead your child up to this point - teaching about privacy, okay and not-okay touching, names for body parts.  But what do you do when you find him pouring over the lingerie ads in your pile of catalogs?  What do you do when another child tells a teacher that your child has touched them in a way that makes them uncomfortable or frightened?  I don’t have the answers for that. 

Inclusion has been part of our lives from the very beginning.  We have tried to shape our lives to include as many normal, typical activities as possible.  The benefits have been meaningful and apparent, and I wouldn’t trade them for anything.  If there is something that brings joy to my child, it is being just like everyone else.  But adolescence has brought an unanticipated aspect of inclusion to the forefront.  What do you do when your efforts towards inclusion meet normally occurring sexual development?  When your child and his/her typically developing peers show sexual interest in each other in the time-honored ways that they always do? 

You find out right away that while your child with a disability might be tolerated as a lab partner or in a peer-reading project, he or she will not be welcome to take part in the sexual/social activities that are so much a part of growing up in this culture.  Inclusion has brought exposure to the same movies, games, television shows, clubs, sports, and other typical free-time activities that children in our society enjoy.  My child has not been isolated or shielded from exposure to the sexually-stimulating messages that we send to all children, like it or not.  Yet now, on the threshold of sexual maturity in a life that contains almost exclusively non-disabled peers, it is clear that this is one door that inclusion will not open.  His attentions, his desires, his needs are not welcome.  What is my child to do? What am I to do? 

These are the challenges ahead for me, and perhaps for you.  I have had to reshape or rethink a few beliefs about inclusion when I look at it from this point in time.  I don’t have answers.  I have a loving, active child who wants to be just like everyone else, a goal I have worked hard at as I’ve tried to shape a good life for him.  Now, I’m wondering if it wouldn’t have been better for him to be raised with different expectations - if more opportunities for interactions with others with disabilities would have lead to a more welcoming environment for his social and sexual maturity.  There are no easy answers, no clear paths. I predict that this struggle that I’m experiencing is one that many others share or will share in the future.  Together, perhaps we can clarify our understanding of our children’s needs and how best to meet them.  As we’ve heard (and said!) so many times, “They won’t be little forever.”

10 Tips: Talking About Sexuality with Your Child with Developmental Disabilities

Reprinted with permission from Planned Parenthood of Tomkins County, Ithaca, NY  http://www.sextalk.org 

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