Fathers’ Roles in Supporting Children with Hypospadias, Epispadias, or a Disorder of Sex Development
The role of a father is important in supporting a child with hypospadias, epispadias, or a disorder of sex development (DSD). As a father, you are your child’s advocate, teacher, and coach.
It is likely that you will go through the process of grief before accepting your child as he or she is. This acceptance is important so that your child can accept himself or herself.
It is important to grieve the loss of the child who was to be and to grieve the loss of easy parenting. This also includes grieving the potential loss of biological grandchildren.
There are different stages of grief, according to the Kübler-Ross model. They are:
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Denial
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Anger
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Bargaining
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Depression
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Acceptance
Where are you? You can be at more than one stage at once. Even if you felt like you have dealt with one stage, it does not mean you are done with it forever. Milestones can bring up grief again.
There are many reactions to your son’s or daughter’s DSD from people inside and outside your family. A common family reaction is that some or all family members suspend normal routines to focus on the crisis. They gather information, and new behaviors are learned. There are sometimes the emotional responses of guilt, blame, grief, denial, and anger. In many ways, the early response sets the stage for how the family will adapt later.
Next, life has to return to your new normality, and you cope with the situation. The ultimate challenge is meeting your child’s needs while meeting the needs of all family members to have a normal life. A change in the child’s function or health may send the family into crisis phase again.
Healthy self-esteem is a child’s armor against the challenges of the world. Many of these tips help build your child’s self esteem and self-acceptance. Play with your child. She or he will pick up on your body language, tone, facial expression, etc. What are you saying to your child without saying anything?
When you feel good about your child, tell him or her. Praise your child often, and be specific in praise. When giving your child critical feedback, do not criticize him or her as a person. Focus on the behavior needing improvement.
Teach your child to make good decisions. Never tease your child. Rehearse with your child how he or she can respond to teasing. Encourage your child to treat others as he wants to be treated. Laugh with your child and teach him to laugh at himself. Teach your child to assert his needs.
Encourage your child to develop hobbies and interests. Encourage your child to form relationships with all types of children. Remember that your child is listening to what you say, how you say it, and what you do.
Teach your child to be responsible for his actions by being responsible for yours. Listen, listen, and listen some more.
Include your child in health care discussions when he or she is old enough. Prepare your child for procedures. Discuss what helps your child cope with the medical team. Include your other children in health care discussions, and prepare them for the procedures when appropriate.
Teach your children to respect his or her siblings. Siblings are going to tease and fight. Decide ahead of time on a plan so that you do not punish them when you are upset. Treat teasing about hypospadias, epispadias, or a DSD as you would treat any other teasing. Your child’s medical condition is just another part of his body life; at the same time, recognize the difference.
Make a plan in advance about how to handle unsupportive family members. When your child is old enough, help him decide what his response to unsupportive people will be. When all else fails, recognize that you cannot change people. They will have to go through their own grieving process. In the meantime, decide how much support you want to offer, and draw boundaries when needed.