Growing up: Helping children become independent as they grow

You can't catch hemophilia: Educating others in the care of your child

Many people are not familiar with hemophilia, so you may find yourself needing to educate them. Here are some suggestions:

• Reassure others that hemophilia is not a contagious disease. It may seem obvious to you, but stating this fact may put people at ease and help to open up conversation
• Advise school staff and/or childcare workers ahead of time that any bleed will need to be treated immediately, and that you must be contacted right away. Be aware that you may have to go to the school to give your child an infusion
• Explain to school staff that being overprotective is not necessary. Let them know the activities your child may take part in, and if there are special needs, discuss how to handle them discreetly
• If possible, arrange a meeting between school staff and your local Hemophilia Treatment Center (HTC)

Early signs of independence: The tween years

Tweens (preteens) are generally capable of thinking logically and seeing the cause and effect of situations. They will be able to report when they have a bleed. They will begin to understand that certain activities are more likely to cause bleeds than others, and they can be encouraged to be cautious about those activities.

Here are some ways to help tweens to develop a healthy attitude toward living with hemophilia:

• Remind them that having hemophilia does not determine who they are or what they will become
• Focus on their strengths and abilities, not on what they cannot do
• Encourage them to become involved with hobbies and activities, such as art or music
• Give them both clear and consistent rules, and the freedom to develop their own interests and abilities
• Let them learn different ways to resolve conflict

More self-empowerment: The teen years

Let's face it—teenagers often think they know it all! But by the time tweens become teens, they may know as much about hemophilia as their parents, plus they may already have started to manage their own treatment by self-infusing.

Communication between teens and adults can become challenging, but it is crucial for parents to demonstrate their strength and support to their children. A little understanding can go a long way. It may be helpful to keep in mind that teens:

• Are trying to figure out who they are and what they want to do with their lives
• May wish to visit doctors on their own and speak privately with their medical team
• May have concerns that friends will not understand their factor treatment needs and/or will tease them for not participating in all of their activities
• Will likely go through a stage where they want to experience risky behavior because they feel nothing can happen to them

When you notice signs of growing independence in your teenager, take it as an opportunity for you to discuss future goals. Talk to your teen about how current choices may either assist or interfere with reaching those goals.