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

"What's this about an eruption?" the shy but determined fourth grader asked his parents. When it comes to the changes of puberty and adolescence, misinformation and uncertainties abound whether one is a youth noticing changes to his or her body or a parent considering how to begin talking about it. Conversations about the physical, emotional, and social changes that accompany puberty and adolescence can be among the most difficult facing parents and youth. This journey to puberty, through adolescence, and into adulthood is one every child will make, including children living with a disability.

While the task of preparing a son or daughter for adolescence may seem overwhelming, thoughtful preparation and adapting information for the specific child can make the preparation easier. Parents and care providers may already be using tools and strategies that can assist with the process. They may also find reassurance in knowing that youth consistently say that they want to learn about adolescence from their parents and that their family's values and cultural beliefs are important to them.

Developing a Plan

A good first step in preparation is for parents, care providers, and those who may be supporting them to ask themselves the following questions:

• What do I know?
• What do I still need to know?
• Where can I find more information?
• Who else can help me?

Together, parents, care providers, and support teams should decide what information – including family beliefs, values and culture – will be shared at each developmental stage of the child's life and who will share it. Next, parents and care providers should consider these questions:

• What information does my child already have?
• What information does my child still need?
• How quickly is the information needed?

Children should learn about physical changes before they go through them, with plenty of time to prepare. Strategies should be matched with a child's preferred learning, information processing, and communication styles to ensure that the information presented is understandable. In the remainder of this article are some specific approaches that may be helpful in communicating the information identified in the plan.

Using Task Analysis and Story Boards for Personal Care

The arrival of puberty brings changes to personal care routines and the need for increased independence in either carrying them out or in directing the person who will be assisting with them. Personal care tasks may consist of many steps that need to be done in a particular order – mastering them may prove difficult without support. Task analysis and story boards are two tools that may be helpful. Task analysis examines a particular self-care task and breaks it down into manageable steps; story boards can be used to illustrate each step and then posted in a convenient place to act as a reminder. For example, for a girl who is learning about managing her period, task analysis can be used to break the task of changing a pad down into sequential steps, which can be illustrated with drawings, photographs or the symbols used in her communication device. The story board can be placed in the bathroom and she can carry a photocopy in her purse to remind her at school until she has mastered the task.

 Reassuring and Rehearsing

Adolescence brings changes for boys, too, such as spontaneous erections. Sometimes boys with disabilities who don't yet know this is a natural part of growing up think that an erection is related to their disability, which can deepen their sense of being "different." One approach parents and care providers may find helpful for explaining these events and how to manage them is to reassure and rehearse. By explaining what spontaneous erections are, and communicating that they happen to boys as a natural part of growing up, adults can reassure a boy that this is an expected part of maturing. And through rehearsing they can talk together about possible specific situations that may occur and explore options for what he can do to manage them. One example of part of such a conversation is this:

Son, soon you will be a teenager! As you continue to grow, you will notice some changes to your body, including your penis. You've probably noticed that your penis can become hard sometimes. That's called an "erection." This is something that's a natural part of growing up for boys. Sometimes it can happen when you are in a public place such as at school. Because your penis is a private part of your body and we have rules for how we take care of it, let's talk about what you can do when it gets hard at school so that you can manage it without embarrassing yourself or someone else.If you are at school and you have an erection while you're sitting at your desk, one thing you could do is stay at your desk until it settles down. That way no one but you will know what is happening to this private part of your body. Can you think of some other times when it might happen at school? What else could you do to make sure you're the only one who knows it's happening at those times? If you want we can practice what you will do when you get an erection in a public place like school.

 Illustrating Personal Boundaries with Circles Charts

Skills needed to successfully navigate social interactions change drastically as a child matures and can prove difficult to acquire. There are societal and cultural expectations of appropriate adult behavior that youth must master to prevent them from making social errors with potentially serious results. Understanding the abstract concepts of personal space and appropriate intimacy may be illustrated with a Circles Chart (a tool developed by Leslie Walker-Hirsch & M.P. Champagne, 1993). The chart is a series of concentric circles with a different category of relationship assigned to each circle. The center circle is the youth; the next, immediate family members and partners; then personal caregivers, friends, teachers and other professionals, acquaintances, and, lastly, strangers. As the people in a youth's life are assigned to different circles, appropriate touching and hugging rules for each circle can be reviewed and reinforced. Illustrations or photos of specific categories of people can be added to a large copy of a chart to further illustrate the concept.

Using Numbers to Explore Behavior

With adolescence comes expectation for understanding how one's actions impact others and the results of those actions – two very abstract concepts. Teachers Kari Dunn Buron and Mitzi Curtis have developed a series of 5-point scales to use in helping students understand their emotional responses to situations, create positive behaviors in response, and maintain appropriate social boundaries. In Kari's book,A 5 is Against the Law(2007), the scale is used to teach social behaviors and boundaries, and the concept that behaviors that may have been tolerated when they were younger can actually be against the law when they're an adult. In this model, a "1" is very informal social behavior, the ways most people first notice each other. A "2" is reasonable behavior, the way people act when they are enjoying each other's company. A "3" is odd behavior that can make people uncomfortable. A "4" is scary behavior, like swearing or staring that could get a person expelled from school or fired from a job. A "5" is physically hurtful or threatening behavior that may result in going to jail. Using this scale, youth, with the assistance of their parents and support team, can examine and rate their behavior to understand social boundaries and the unintended consequences of communication and other interactions.

Practicing Askable Parenting and Teachable Moments

Not every strategy just presented is appropriate for every child. However, two that are helpful for every parent and care provider include being an "askable parent" and using "teachable moments."

Being an askable parent means that your child considers you to be approachable and open to questions – even the difficult and uncomfortable ones. Parents and care providers can take the initiative by asking open-ended questions, truly listening to their child's response, not judging, and engaging in two-way communication that supports a child's learning. Maintaining a calm demeanor is imperative – children learn just as much from how an adult responds and what they don't say. If a parent or care provider cannot answer a youth's question, they and the youth can search together for an answer. Depending upon the question, parents and care providers may need to consult professionals or representatives from disability-specific organizations that support adults living with disabilities. Finally, being askable means understanding the information youth need at a particular stage in their development, and providing it in the way that best suits their learning and processing preferences, and reflects their developmental age.

Starting conversations about puberty and adolescence can feel awkward. Everyday occurrences, or "teachable moments," can be used to expand opportunities for discussions and skill development. Underwear ads in magazines can provide an opportunity to reinforce public and private concepts by discussing the private parts of the body that are covered by underwear and where it is acceptable to wear only underwear. Watching TV and movies together provides great opportunities for parents and youth to explore the social situations depicted and discuss how a youth might react if faced with a similar situation.

Preparing Now

One of the greatest gifts we can offer our children is permission and support to grow up. The parents and care providers of youth living with disabilities may find it difficult to think ahead to their child's adulthood, yet doing so is important. Preparing for this journey can help parents and care providers feel more comfortable and confident. Helping youth prepare for and understand their own journey into puberty and adolescence will help them become fully accepted, fully participating adults in their community.

Note: Much of the information in this article came from the PACER Center's Family Advocacy and Support Training project, funded by the Administration on Developmental Disabilities at the U.S. Department of Health and Human Services.