Wednesday, February 15, 2017
Written by Barbara Goldschmidt
A valentine is not instructions. Or an essay with footnotes. A valentine is an emotional message that tells someone you care. But it’s not easy to express how we feel, even when we want to, so we often get help from Hallmark. That’s okay. But when a young adult has a cognitive disability, there is an additional layer of difficulty in expressing the need for a loving relationship. And not just on Valentine’s Day.
As our children with special needs become adults, it’s only natural that we start to wonder what part love—and with it sexuality—may play in their lives. Since love is a realm that engages all of the senses—touch, smell, vision, hearing, speaking and inner sight—it can often overpower reason. How can we support our children as they face this potential terrain, with all of its potential risks and joys?
Facing Fears
The protective advocacy we exhibit for our children is an expression of our own fierce love. But at some point they need to venture beyond our protection. We are naturally confused and afraid—who can love them as unconditionally as we do? Will they be safe? How will they respond to the inevitable challenges that come with romantic involvement?
For me, inquiries always begin with research. An excellent definition of sexuality fortified my sense that this was a developmental stage to embrace wholeheartedly. A report for educators, Sexuality Education for People with Disabilities*, defines sexuality as “a composite term referring to the totality of a person’s being. It is concerned with the biological, psychological, sociological, and spiritual variables of life, which affect personality development and interpersonal relations. It encompasses bodily changes, feelings, gender identification, and an array of behavioral manifestations. Genital activity is but one small part of human sexuality.” If we are hoping to embrace the ILO model of a full life, how can we ignore the role that intimacy might have?
Social worker Michelle Ballan writes in the report that overprotective parents may be depriving their children of a full expression of their emotional life, which should include intimacy, love and affection. If parents believe their children are too immature for intimacy, Ms. Ballan advises that “maturity occurs within several matrices: intellectual, physical, social, emotional, sexual, and psychological. People with developmental disabilities are capable of maturing, even when one or two matrices are delayed.” In other words, people disabled in one way are not necessarily disabled in every way. If we want our self-advocates to have full lives, we have to acknowledge that all people, including people with disabilities, are sexual beings with sexual needs.
A Most Delicate Education
Who will teach our children about intimacy? The title of Ms. Ballan’s article says it all: “Parents as Sexuality Educators for Their Children with Developmental Disabilities.” Once again, we have to be advocates, even as our role of advocate should be waning. There are challenges.
First of all, parents may be reluctant to discuss sex, thinking it will increase sexual interest and activity. However, Ms. Ballan says research shows that the opposite occurs, that “sexuality education acts as a deterrent by teaching responsibility and control.” Furthermore, education reduces vulnerability to sexual exploitation. Information that comes mostly from friends or the media is often conflicting, incomplete and inaccurate. The resulting confusion “can be even worse for boys and girls with developmental disabilities, whose sexuality needs are generally overlooked or denied.”
Children turn to peers, because talking about sex with parents may have a big “yuck” factor. And at some point, our children need to hear other, more objective, voices. The report advises that parents should get support from sexuality educators and family service providers. I agree, but I have hit a wall in trying to locate a local source. I’m thinking Planned Parenthood may be a resource. I haven’t found a private therapist who can talk about the happy side of sex and not just about dangers. The search will go on.
In the meantime, the report provides some strategies families can use to teach and model for their children:
* Teach the difference between public and private. Parents should demonstrate consistency in caregiving actions. They should encourage their children to disrobe and dress in a room with a closed door. They should knock on their children’s door before entering.
* Teach independence. Parents should encourage their children to be responsible for their personal care and hygiene. This helps them gain a sense of body ownership.
* Talk about changes that occur during puberty, in both boys and girls.
* Help children differentiate thoughts from behaviors.
Expanding Possibilities
The report pointed out a common truth: Children and young adults with disabilities are usually so closely supervised during social activities that normal expressions of intimacy are often inhibited. I am certainly guilty of uber supervision. That’s the safest strategy, but as the saying goes, “ships are safe in the harbor, but that’s not what ships are for.”
One of the reasons we moved to DC was to expand our daughter’s social opportunities for friendship, companionship and hopefully, eventually, a loving other. This is gradually happening in a number of ways. The ILO community has been a source of friendship for me, as well as for my daughter. Parents working together have set up a community (pod) which fosters relationships for their sons. They live in separate apartments but meet together on a regular basis. They have a community builder who can promote social events.
There are plenty of groups organized around various disabilities, but these do tend to be heavily supervised. The tricky part is allowing independence, finding the right balance between watchfulness and freedom. As we have learned about living—that you don’t just plop your kid in an apartment—so it is with looking for love. We can’t just set up a Tinder app or expect results from speed dating or hanging out at a bar.
The “old-fashioned” way is best, I think, and feels right for my daughter. She is sociable, but savvy, and seeks out friendship. We have taken the whole-life model to heart and turn to the community; at a nearby church she has found a robust young adult group that offers regular movie nights, brunches and volunteer opportunities. (Regular, consistent meetings is a key, I think.) She also volunteers at a community center. She can go to these events on her own, thanks to public transportation, taxis, and the smart phone.
At first when she went out I worried that I hadn’t vetted a situation enough; the demons of doom haunted me. But gradually, as her experiences have been positive, I am becoming less fearful and more hopeful. And she is growing. As she becomes more open to a relationship, the next steps in education—birth control, safe sex, masturbation, sexual abuse prevention—are on the horizon. It’s a process. Other parents who have helped their adult children transition to independence talk about the time it took—usually a few years—to get comfortable with the changes.
Wouldn’t it be nice if “All You Need is Love” were true. Maybe love, like music, seems effortless, but in reality it takes a lot of practice and patience. It’s like tending an inner flame, a delicate, yet powerful force that provides warmth and will light our way.
*Sexuality Education for People with Disabilities. Siecus Report, Vol. 29, No. 3, February/March 2001.
