Adolescence (11-18)

Adolescence is a time of much physical, emotional, and intellectual growth in a person’s life. In early adolescence, children begin to leave behind their child-like thinking and think more often like adults. They often think about abstract ideas, relationships, and their lives. This is not something that happens all of a sudden or in one certain moment of time. Children will go back and forth in their abilities to think this way. This can lead to much confusion for them and for all of us around them.

The physical changes that come with puberty may cause confusion and anxiety for adolescents. At this stage in his life, your adolescent may need extra support from family, and medical personnel, including mental health care professionals. It may also help to put your child in touch with adults who have DSDs, so he can see that people like him have “survived” adolescence and done well.

The fast physical changes that happen to your child during puberty can catch her off guard. It is important to prepare your child and yourself for the changes that will occur during puberty by educating her and yourself in advance. If you have been talking with your child throughout her childhood about gender, sexuality, and her DSD, it will be easier for you to discuss puberty and sexual maturity. If you have not been talking, now is the time you really need to get that talking going. Your child will likely want you to help her understand what is going on with her body, and to assure her she is okay. The resource section at the end of the handbook suggests books on educating adolescents about pubertal physical changes, body image, dating, and sexuality.

Adolescent development affects more than your child’s body. You may notice that your child is more prone to mood swings and emotional outbursts during this time. It is difficult on any child to go through this mix of physical changes, mental changes, and role changes. If your child is showing a lot of mood changes, remember that this is common for adolescents. Even though it may be difficult, try to find a way to sit down with your child often so you can give him or her a chance to talk about his or her feelings, interests, and concerns. Try to take all of them seriously. Listen and do not spend a lot of energy judging him or her. If your child feels like he or she will be judged every time you talk, your child will avoid talking with you.

Many adolescents are self-conscious and critical of themselves. Adolescents are very concerned about their physical appearance. Many worry about being too fat or not having stylish enough clothes. Although people expect girls to worry about their appearance more than boys, many boys have the same worries during adolescence. Try to be balanced. Ask yourself whether you are asking a girl about her appearance too often, while you are not asking a boy about his opinion of this at all. You may tell children at this age that you understand the social pressure to “look right,” and ask them if they are feeling that pressure. Their thoughts about this will help them talk more about their self-esteem (how they are feeling about themselves). Not all teens will struggle much with these issues. If your teen does struggle and suffer a lot from this struggle, there are many ways to help him or her. Seeking assistance from a professional counselor or therapist is often beneficial.

Adolescents notice that they are becoming more and more like adults both physically and mentally. They begin to long for independence from their parents. It is common at this age for children to start to pull themselves back from their families in search of independence and identities of their own. It is also common for early adolescents to be embarrassed to be seen in public with their families. Even in your own house, you may find your child telling you he wants more space and time alone. You may pass by the bedroom of your adolescent and see a KEEP OUT sign that was not there the day before. If you could talk to your child about sensitive topics during his childhood, do not be surprised if all of the sudden he shies away from talking about gender and sexuality. Friends and peer groups are often more important than anything else in an adolescent’s life. At this point in a child’s life, being accepted by a peer group feels very important to him. To avoid being left out of a peer group, adolescents will behave in ways they think will make others accept them. Peer pressure becomes a powerful force.

Not all adolescents will have friends or be accepted by their peers. Adolescents will sometimes scapegoat, single out, or tease a classmate. Although this cruel behavior is not uncommon for adolescents, it is very painful for the adolescent who is singled out. If this should happen to your child, work with your child’s school on a “zero tolerance” rule for teasing and bullying. (That means the school will not put up with any teasing or bullying.) If your child is rejected by her or his peers, there are things you can do to help your child. It is important to listen to your child’s feelings, especially when she feels pain. Show her through your body language that you are listening; face her in a way that your eyes meet, and do not have your arms crossed, but rather have them more open. Show her that you are hearing her by sometimes repeating back what she has said. Do not try to “sugar coat” what she has said; really repeat back some of what she has just said, so she knows she is being heard by you and taken seriously.

Although there is nothing unacceptable about children born with DSDs, they are different than the average, and our society often pushes to the sides people who are different than the average. Your child may pick up on this by things she hears or sees around her—like mean remarks made about people who are sexually different than the average, or mean remarks made about people who were born with disabilities. Again, listen carefully to what your child is feeling. Also let your child know that she is much more than her DSD, so that when people make mean remarks about her, or people like her, they are being unfair in assuming that people like her are not okay. If you can help your child define who she is, as a whole person (such as a member of the school journalism club, a crew member in a local theatre group, a loving brother or sister to your younger children), then the bully’s power is reduced. You can help your child by finding out about activities that she can join, activities that can make her feel happy, proud, and accepted as who she is. Many times children who are teased at school will have a more positive experience in a setting outside of school, such as with a local children’s theatre group, a hobby club, or a sport group. Your child can, in this way, also expand her experiences and learn about who she is in the “big picture.”

As we mentioned above, puberty begins a time of sexual awakening for most early adolescents. They start to have active sexual feelings and feel definite physical attraction towards others. Adolescents begin to think about boyfriends, girlfriends, and dating. Your child may or may not have specific worries about sexuality, but worries about attractiveness and dating fears are common in all adolescents. As always, it is important to have sex education available to your child, through you and other resources. If you feel like you are in over your head on these issues, or your child wants to talk to someone else in addition to you, you may find it helpful to seek out a therapist with good knowledge of adolescent sexuality. Ask your child’s doctor and support groups for help in finding someone. Below is an example of a possible way to approach your teen during this time in their life:

Parent to teen

I’m not sure whether or not you feel comfortable talking to me about issues of sexuality right now. I just want you to know that if you do have any questions to ask, I will always be open to talking with you. We can talk about absolutely any issue or question that you would like to bring up. I might blush, but I do want to talk! (Pause. If necessary, add:) If you would rather talk to other people about sex, I can help you talk with other teens or with a professional therapist.

Jane Goto and her mother

Concerns about fertility may come up in your child’s life at this point. Your child may want to know from you whether and how she can get pregnant, or whether and how he can get a girl pregnant. If your child is infertile, talk with your child about whether reproductive technologies may help him or her become a biological parent. (Your child’s doctor and support groups can help answer these questions.) Talk with your child about adoption, too. Introducing your child to families with adopted children helps your child see this as a real possibility.

As we talked about in the earlier sections, adolescents may be interested in seeking out surgeries and hormone treatments to make their bodies look and function differently. Help your child find out about the options and the risks and outcomes that come with each. Try to help him or her talk with adults who have had and not had what your child is considering, and encourage your child to take the time to make the decision that is right for him or her. If there is any chance your child might be seeking out surgeries or hormone treatments to try to “fit in” or “make it up to you” that she or he has a DSD, or that she or he is gay, be sure to have a mental health professional help your child figure out whether the choice really is the right one, in the long term, for him or her.

As your child gets older, he may not want you to be present when discussing issues with physicians and counselors. It’s important that your concerns as the parent are taken seriously by your child’s doctors and counselors. However, you also need to support and respect your child’s request for privacy when he wants to talk alone with physicians and counselors. This form of love, trust, and respect will help your child grow into a confident person who can take care of himself, including taking care of his own medical care. Because your child will, at some age (whether it be at 13 or 19), start talking to the doctor without you there, it is important that you be honest with him about his body and his medical history (including what happened before he can remember, and what happened that he may remember). It may hurt your child if he finds out from the doctor something he should have found out from you. If there is something you want the doctor to explain to your child that you have not yet explained to him, set up a time to do this when you can be present to comfort your child and answer any questions he may have of you. Set this up so the doctor knows what you want her to tell your child. If possible, it is a good idea to also think about having this information given instead by a social worker, nurse, or psychologist that your child has come to trust. Being present with your child at such a meeting makes it clear to your child that you are working to help him know the truth about his body and his life. Again, when you are honest with your child in this way, it lets him know you accept him, trust him, love him, and are not ashamed of him.

Adolescents with DSDs may feel alone and lonely if they aren’t able to connect with others who share their same condition. Social workers, nurses, or child life professionals in the clinic where your child is being treated and internet resources listed at the end of the book are ways for your children to connect with others like themselves. Other adolescents and older people with DSDs can serve as sympathetic role models for teens who are struggling with self-esteem and identity issues. Meeting others with the same or a similar DSD will go a long way in reassuring your child that he is just an ordinary human being after all.

Do not be surprised if fears about sexuality bring up feelings of grief for your child. Your child may go through a period where she grieves not having been born with a “normal” body. The idea of dating can cause a lot of stress for children with DSDs. They may feel like “no one will want to be with me because I’m sexually different.” This feeling may be even stronger if your child knows he or she is gay. You may find your child doesn’t even want to try dating, out of fear of being rejected. In this case, again and again talk with your child about how dating is mostly about the relationship, not body parts. Help him or her think about how to work on good relationships with others. Show him or her, by your example, that love and acceptance go together. Consider finding a therapist who can help your child think about how to approach dating and the issue of maybe talking with boyfriends or girlfriends about his or her DSD. Meeting adults with the same or a similar DSD who are in happy, long-term relationships can be very reassuring.

In this section, we’ve talked about a lot of the stress and challenges that can come from adolescence. But remember to notice also the special joy that comes from having your child grow up. Now you can talk with him about many interesting things, and participate in more adult-like activities together (like physically challenging sports, watching and talking about the news, doing meaningful volunteer work, perhaps through a support group for other families with DSDs). Show your child you enjoy doing these things with him, and tell him you are proud of him for who he is. Talk about your life histories together, so he knows you have loved watching him mature and grow.