Parents are a child’s first and most important teachers, and they are so essential for a child to understand the complexities of DSD. Secrecy or withholding information can cause pain and shame, and no parent wants that experience for their child. The earlier in a child’s educational process the parents get involved, the more success your child will have in growing to understand and accept not only their own uniqueness, but the differences of those around them. However, it is understandable that a diagnosis can be discovered at any age, so it is important to remember these are only suggestions to help guide you on your way. Just as every situation is unique, there is not a set way to begin this process. Feel free to do what works for you.
At times, disclosing can seem like an overwhelming task. We like to think it takes a “village” to raise a child, made of parents, grandparents, peers and adults with DSD, medical professionals, and a myriad of others who add to the tapestry of their lives. We can’t do it alone, but if we hold hands and stick together we can create happy memories that will give children the roots to live a good life and wings to create a bright future.
Toss the First Pebble
Teaching children is often described to be like throwing pebbles in a small pond. In the case of a DSD diagnosis, a parent has a large bucket of material that they would like add to the base of the pond, but if they throw it all in at once, they risk splashing much of the contents out and muddying the water. However, if you gently toss in one pebble at a time, the water will only adapt by creating small ripples that positively grow outward, and the knowledge will happen gradually, naturally, and with much less unsettling discomfort.
If you discover your child’s diagnosis at a young age, begin small. Practice telling your child their diagnosis when they are a baby. Verbalizing the information you want to share can allow you to work through your own feelings and give you practice in creating just the right way you want to say things. Babies, after all, can’t remember, so they are great practice partners. You can work things out with them so that you feel prepared when talking with others. Using positive tone, facial expressions, and touch can be very meaningful to your baby, even if they don’t understand what you are saying.
Your child is never too young to start teaching love and acceptance. Parents start by telling their child often how much they love them and that they are special. It is true; there is no other person on the planet just like them. Read books (we have a helpful list in our member resources) about being special, and point out differences in characters in the story and what makes them unique. Explain your own personality and physical uniqueness, your spouse’s uniqueness, how siblings are special, and people you meet or see. (For a long time, my children were convinced my special power was x-ray vision, because I could tell if my daughter was wearing underwear or not.) Dogs, cats, and other animals also each have talents and things that make them special. Celebrate this diversity as a way to add value to your child’s world. You will find that your child enjoys being your extra special someone. Make sure you take the time to tell them how much they mean to you. This development is important for every child, and not just children who are a little different. Teaching acceptance at a young age can be the first pebble in any child’s pond. Involving siblings in this kind of development is wonderful for developing compassion and acceptance for differences they may discover later on in life.
There is no right or wrong time to talk about this, but during the toddler stages, the conversations are generally initiated by the parent. After time you may notice your child asking questions when you least expect it. The car, the store , or on a walk can sometimes be great times to talk. Keep your answers open and encouraging. Children watch your every reaction and will depend upon you to form their opinions and beliefs.
If a particular DSD diagnosis includes not having biological children, talking with children about adoption at different ages and developmental stages is another step you can take to early understanding of family building. In addition, a parent can point out how a neighbor is a career woman, or how Mr. Johnson has two dogs instead of a spouse and children. Many parents choose to “adopt” dolls from the store, stuffed animals, or a puppy if the time for a pet is right with their children. Some children will want to talk about adoption, and some will have lots of questions. Our job as parents is to look for opportunities to engage in this topic, to show the positive perspective and possibility of building families in other ways often sooner than many children will ever realize it is possible. This will help bridge to the next pebble of understanding where babies come from and why their body is a little different.
While surrogacy is a little beyond understanding at ages two to four, that subject can also be added when they are old enough to understand that babies can be carried inside of another woman until they are ready to be born. Growing with this knowledge is sometimes easier than finding out as a young adult, and even though every child is different, it can be felt as a natural right-of-passage that they feel they weren’t given the opportunity later in life. It is important that they realize many individuals consider these options, even those who can have biological children. It takes more than DNA to be a great parent, and there will be someone special out there who needs them to be their mom or dad.
Around ages 3-4, many children become curious about their appearance as well as how babies grow in a mother’s tummy. As they grow more observant of the world around them, they pick up on these details. The pebbles you have already released about diversity and adoption come into play here. When questions arise, or when it feels like the right time, you can discuss how genitals can be different, and how that is okay because everyone is unique and special. It is important for them to know there are many ways for bodies to be different. For example, when my daughter asked about having a baby in her tummy, I explained babies were carried in a “pocket” called a uterus. (This was a term we used because of a book we had often read, entitled “Katy No Pocket”, about a kangaroo that did not have a pocket to hold her baby in, but instead found a way to hold her baby and many others in the end by wearing a multi-pocket apron.) I went on to explain how not everyone has a pocket to grow a baby, and how even if women have pockets, they don’t always work , so adoption was the way they chose to grow their families in their hearts instead. In addition, I let her know that I would be so excited if she wanted to adopt someday.
Doctor Visits and Differences
Keep the water clear. It is important your child feels like he or she is able to bring up any questions they have at any time. By staying open and matter-of-fact, children will build a sense of trust in their parent’s answers. Though sometimes these questions may come up at the super market or in a public restroom, it is important to do your best to answer the question at that time instead of telling your child to wait until later. A short answer will work, and if you choose to expand, you can always add to the answers later when in a more relaxed environment. Answering is important, however, because no one wants to give the impression that these are ideas and thoughts to be ashamed of, that need to be kept secret or hidden. That can often feel hard to do, but after a few times, it will feel like second nature.
Explaining multiple blood draws and tests or doctor visits can be another area of concern. Explaining that doctors are there to make sure you are healthy, and they need certain information to keep track of your child’s growth and health can help. Many of these tests have to do with hormones, and explaining these differences can help your child understand what is going on during appointments. Using age appropriate terminology can help. Describing hormones as building blocks or different juices in the body have been tools many of the parents in the group have used in the past. Describing how boys usually have “blue juice” in them and girls usually have “red juice” can help give children an idea that different chemicals help us grow different ways. For XY females, a parent would then add how sometimes girls can have “blue juice” too, like they do and that is okay. Some children might have a little “purple juice”, or boys can also have “red juice” and that is just how they are unique. The same analogy can be made with different color building blocks. Picking a subject and color that your child can relate to is important. Whether it is Legos, trains, their favorite color, bubbles, fruit juice, or flavors, it is all just another tool to expand understanding.
Telling your child what to expect at a doctor’s exam can also be useful. Role playing the doctor and the patient can be a great way to play as well as teach your child what and why things happen at the doctor’s office. Genital exams are also something common at a DSD related appointment. Getting your child’s permission empowers them in the doctor’s office, and you or your child can refuse an exam whenever you feel it is not necessary for treatment. It is important for your child to realize you are the advocate for them and care about their feelings. Repetitive examinations can be traumatizing for young children, and your goal is to be his or her voice until they choose to speak for themselves. It is okay to just say no, and they need to know that you are behind their decisions. Ask your child beforehand what their choice will be so they have time to think about it, and limit all exams to only ones that are needed to monitor health and development.
Adding Again and Again
As we continue to develop the concepts we began in infancy of accepting diversity, differences, and being special, of having a voice in exams, different ways to build families, and developing positive self-esteem, the time for full disclosure arrives before we know it. Many times we will find that the same information must be pebbled again as it was set aside as soon as it was tossed in. Around age nine, many need hormone replacement therapy or a boost in hormone levels to assist in puberty. Explaining this can often lead to full disclosure of how babies develop differently and how these differences make us unique individuals.
Adding the final pebbles of chromosomal makeup and diagnosis information to a child’s pool of knowledge can be vastly different for each child. Physical differences, maturity, and development can all be factors that come into play when deciding when to drop the next pebble. Teens and young adults in the support group often feel they were not told early enough. Some feel they were told too soon. It is obvious there is no right way, but we can only do the best we can. Age can vary. There are some nine year olds that are capable of understanding abstract concepts such as chromosomes and human development, while at the same time there are thirteen year olds who are not ready to discuss the same topic. Only you know when your child is ready, and when they are, we will be here to help. We have many tweens and teens ready to reach out and accept them into their community. There is nothing like meeting others who have similar experiences. Attending conferences, meeting others, and promoting openness will help to lead to positive growing experiences where they feel valued and cherished for just being themselves.
“The task is large and our efforts may seem but a drop in the pond. But as the pebble of our intentions creates ripples of goodness and love that spread across not only the pond but to the vast oceans beyond.”