Impact Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities

I think one of the most important things related to helping my daughter grow into a sexually healthy adult has been figuring out how to help her feel good about who she is as a human being. This sounds easy, but really is and was quite challenging for us. Let's face it, for the most part our society values intelligence, outer beauty, speed, and efficiency. Just count how many times in a day other people talk and brag about how intelligent, brilliant, "advanced" or "high functioning" their babies, kids, teens or other adults are – it will amaze you. As much progress as we've made integrating people with intellectual disabilities into the world, we have a long way to go. We must not forget that the experiences our sons and daughters have living life with a disability are not the same as ours. They are stared at, talked to differently, treated younger than their same-aged peers, and often discretely ridiculed when we're not around. This influences and shapes self-esteem in such a dramatic way that we can't just pretend our sons and daughters are "just like everyone else." Anna figured this out way faster than I did and her experiences manifested in her not wanting to have Down syndrome at one point in time. She told me she preferred being a "regular kid" (her words not mine). This was difficult, really difficult. I wanted her to grow up proud of who she was, including feeling okay about having a disability. Besides, isn't loving yourself the foundation for healthy sexuality in adulthood?

The work and support required to help her feel good about herself began in pre-adolescence and required many discussions about her disability, helping her understand Down syndrome and how her disability affected her uniquely, and offering strategies that would help her in life. My work (eventually her work) involved identifying gaps in knowledge and skill levels that would help her become more socially appropriate so she was more accepted, as well as helping her figure out how to have an active social life. It became clearer to me in adolescence that her peer group would be other teens with disabilities. Exploring clubs, activities, and groups where she could belong and feel good became a part of the process. I began to realize that she needed to have meaningful connections with others and to feel like she belonged to something outside of the family. The older she became, the more she became my guide on what she needed to feel okay about herself and her disability. The road was bumpy, but in her adult life she is pretty proud of who she is and has become.

The other idea that's been important related to sexuality is thinking of my daughter in her chronological age vs. developmental age. I have noticed that regardless of her cognitive disability, Anna has been pretty much on track with most everything related to sexuality: physical development, experiencing sexual feelings and crushes, her desire to date and have a boyfriend, and current aspirations to have a serious, long-term relationship as an adult. She hasn't always understood how to manage these developmental benchmarks or acted appropriately as she moved through these stages, but my job as a parent has been to prepare, educate, facilitate, and identify her needs for support as she developed and matured in the same way her peers did. Thinking about her this way has helped greatly. I have noticed that when I think about her chronological age, treat her that age, and have expectations for that age, she has grown and matured in ways I never imagined. She surprises me often. Her developmental age helped me understand how to adapt and modify messages and teaching so it would be more useful and understandable, but otherwise it was irrelevant.

Teaching sessions about sexuality and relationships have evolved over the years in a variety of ways. The younger my daughter was, the briefer, simpler, and more concrete the rules. For example, rules about who she could talk to about her periods were very specific (her teacher and me). Or understanding the appropriate level of affection when greeting someone new (a handshake vs. a bear hug) required sharing a simple rule, some role modeling, then her practicing in a variety of social situations. Now, as an adult, the topics are more complex and the rules aren't always so simple. For example, understanding how to determine if a relationship is healthy or exploitative not only requires teaching, but also an ability to make decisions and problem solve.

The other change in teaching has been that the content has changed from what I think she should know to more self-directed topics. A short time ago Anna asked me, "Am I old enough to date?" (she was 20 at the time). I said, "Yeah, you're old enough to date." She stated she was glad and then named the person she wanted to start dating. She decided what she wanted to learn and figure out related to dating. It seems to have become more self-initiated, which indicates she is understanding her rights to information about sexuality.

In adolescence and into adulthood, I have found teaching/information provided by another adult can be helpful, powerful and impactful. Our kids are similar to other kids in that they tire of us being the teacher all the time. Having another skilled professional share information in understandable ways, especially in adolescence and adulthood, can be beneficial and refreshing. Repetitive messages from multiple sources is always a good thing.

As parents we have learned so many things raising Anna and my other daughter, but here are some of the lessons I keep coming back to:

• You don't have complete control over how and when your son or daughter learns about sexuality. I used to tell myself, "I really should set up my laptop and create a presentation on relationships and boundaries because she needs some help with that." And then naively think that Anna's needs would wait until I was ready to share the information. It became clear to me, however, that learning from peers, television and other sources was a daily event and incredibly influential. Watching her same-aged peers flirt and incessantly talk about boys, and her repeated exposure to the sexual innuendoes on television (yes, even on the Disney channel!!), were contributing models for social behavior whether appropriate or not. If your child is out in the world experiencing life (hopefully they are), they will begin to interpret their world in their own way and will likely need guidance understanding social rules and relationships on their own time schedule, not only when you're ready.
• One discussion or teaching session is never enough. Learning and understanding what it means to be a sexual human being is a complex, life-long process. One teaching session, experience, or "talk" is inadequate. Our sons and daughters need lots of opportunities to learn and practice skills, ask questions, make mistakes, and have people in their lives who are willing and open to address sexuality issues. Your ability to be "askable" and provide coaching throughout life is a gift we can give all of your sons and daughters.

For this article I asked Anna what's been most important to her as we've talked about sexuality over the years, her view of how those talks have changed as she's grown up, and important lessons she's learned along the way. I'll close with her responses:

• What's been important? "I've learned a lot growing up, but I think learning how to take care of my body by myself was important. I got to go to camp overnight and spend time with my friends when I could take a shower by myself."
• How have our teaching talks changed? "My mom was an excellent teacher and now she is my coach."
• What lessons have you learned? "I have learned to do the right thing. I have made mistakes. Now I know how to behave myself, act appropriate so people aren't embarrassed to be around me. If you need help or are not sure what the rules are, ask someone for help."