Notes to Parents of Children with Bleeding Disorders
When you first find out your child has a bleeding disorder
This section tells how parents may react when they learn their child has a bleeding disorder. All of us look for ways to cope with our problems and demands. Some ways that we cope are helpful. Others do more harm than good. You may not have the same feelings or do the same things as the parents described here. If you do have them, you are not alone.
When you first heard your child had a bleeding disorder, you may have been shocked. Perhaps you did not find out about it until she or he was a teenager. You may have been angry that you missed the warning signs. As you wondered what kind of life your child would have, you probably were afraid. You may have pictured a life full of problems and all of the things you thought she or he would never be able to do. You may have grieved, both over the loss of the perfect baby you had in your mind and over the very real medical problems your child could face.
When parents are told that their child has a serious medical problem, they go through a very emotional time. Common feelings are shock, not believing it is true, and anger. Some parents suffer fear and depression as well. These feelings may come up at different times. After you think you have gotten over it, you may find the emotion coming back.
When trying to deal with their feelings, sometimes parents get stuck. A parent may not be able to accept that his or her child has a bleeding disorder. The parent can't move on to coping with the problem. If this should happen to you, your HTC can help. Most people do come to accept that their child has a bleeding disorder. They also become determined to face problems one day at a time and to make the most of life. As you begin to deal with your child's bleeding disorder, you may feel very alone. It can be hard to find someone who can answer your questions and give you support. You may feel that family members do not understand. Your friends may know too little and only feel sorry for you. It may seem that your doctor doesn't have time for you. Where do you turn?
The members of the comprehensive care team at your HTC are ready to help you. They are trained to help patients and their families understand and manage bleeding disorders. They know all about how to deal with the problems you are facing.
If you are interested, your HTC or local hemophilia program can help you find a support group for parents of children with bleeding disorders. They may put you in touch with a parent who lives near you and who has gone through the same things. You may feel better after talking to someone who has been where you are now. You and your family will have to make changes at each stage of your child's life. This happens to all families, whether or not a child has a bleeding disorder. All new parents are unsure how to handle ages like the "terrible twos" or the teenage years.
It is normal to worry about the future. However, try to keep your mind on where your child is now. Taking care of a bleeding disorder is new to you. You will get more sure of yourself as you go along. With time, you'll know more and have more experience. It will be easier to handle your child’s bleeding disorder.
Sometimes special problems come up with a bleeding disorder. They can make you feel more confused and helpless. For instance, parents of children with some bleeding disorders can get very frustrated as the treatments do not seem to work. This is the time to reach out to the people who work at the HTC. They can help you deal with the stress of working out special problems.
A bleeding disorder is just one part of your child’s life. The disorder is not his or her whole identity. Although we talk about and hope for perfect babies, there is no such thing. Every child has medical concerns, whether it is allergies, poor eyesight, a problem kidney, or something else. Each child is special in his or her own way. Having a bleeding disorder does not mean that your child will have a less than fulfilling life. It is within her or his power to be a happy, well-adjusted person who can succeed in many things.
There will be times when you feel depressed about your child’s bleeding disorder. Although we would like to know what the future holds, it is not possible. No one can predict what his or her health and life will be like in the future. Keep in mind that medicine gets better all the time. The outlook for a cure for many bleeding disorders has never been brighter.
You may find yourself refusing to accept or admit that your child has a bleeding disorder. You may be using a coping method called denial. Denial means not accepting a situation because it is too painful to face.
It is normal to want to believe that the doctors are wrong. Continuing to deny your child’s bleeding disorder will cause problems as he or she grows older. Your child will pick up on your refusal to accept the bleeding disorder. She or he will think that having a bleeding disorder is bad. This can hurt the way a child feels about himself or herself (the child’s self-esteem).
Denial can also make you ignore the signs of a bleed as long as you can. You may delay your child’s treatment. Treating bleeds right away can mean less pain and fewer problems later. Teaching your daughter to treat her heavy periods will boost her confidence and mean fewer missed days of school.
Another reaction parents may have to a child with a bleeding disorder is withdrawal. This means becoming emotionally distant from your child. One reason parents may withdraw is that they feel guilty. A parent may feel guilty for being a carrier. Fathers may feel guilty about disappointment in having sons who cannot do things many fathers expect, such as play football. Parents may withdraw because they think their dreams for their child will not come true.
It is normal for a parent at times to feel disappointed in a child. But a parent who withdraws can leave the child feeling rejected. The child will have little self-esteem. No child can fulfill all of the parents' dreams. No parent should try to dictate the course of a child's life. It is important that you accept and love your child as he or she is and let him or her know that you do. Help your child know that she or he is special. One way to do this is to spend time together doing something that you both enjoy.
Parents may withdraw from other people too. It may seem that no one understands your situation. Some parents who believe that they are alone with their responsibilities find it hard to build friendships. They believe that they lack the time and energy to work on a close friendship. They may feel very lonely and isolated. It is also possible for the whole family to withdraw or isolate itself. Family members may feel that they must deal with the bleeding disorder or any family problems without outside help. Or they may try to build a protective wall around the family. Separating yourselves in this way is not healthy. It is not always easy to reach out to others. Building a supportive network of friends and family is a first step to dealing with many of life's problems.
Telling other people about your child's bleeding disorder
When you first learned your child had a bleeding disorder, you had your own shock and sadness to overcome. Perhaps then you began wondering how to tell other people. Whom you tell and when you tell them is your own decision. Most of the time, telling others about a bleeding disorder is more helpful than hurtful. Educating others is the best defense against misunderstanding and fear.
The way other people react will depend in part on how you tell them your child has a bleeding disorder. First, pick the right time. Then show that you have a positive attitude and are willing to explain things. If you do this, most people will express true interest and support. Your positive, matter-of-fact way of talking about the bleeding disorder with others will help your child. It will help him or her learn to deal with the questions and comments he or she will hear throughout life. If others are tactless, try to be humorous about it. Your child may need some help in learning how to tell friends and classmates about the bleeding disorder. Help her or him plan simple but truthful answers to questions the other children may ask. It may help your child to practice answers with you first.
Be sure to tell the school staff, scout leaders, and any other adults responsible for your child about the bleeding disorder. Most people know very little about bleeding disorders and will be glad to get the facts. Also, you will want to make a plan of action in case your child starts bleeding. You might find it helpful to make a checklist of facts to include when you talk to adults about the bleeding disorder.
Discipline means teaching your children the limits you set, the limits set by society, and how to set their own. Children want and need to know what behavior is acceptable. It is up to you to teach your children what you expect of them. Two keys to effective discipline are to be consistent and to be a role model. Being consistent means that rules are enforced every time. Behavior that is punished one day is not ignored the next. Parents need to be role models for good behavior. If the rule is to pick-up after yourself, it should apply to both adults and children.
If your young child has temper tantrums, try to remain calm during them. Check around your child to be sure there is nothing that can hurt him or her and then try to ignore the tantrum. The child will probably end the tantrum when you do not react. On the other hand, some children need help getting back into control. These children may need parents to hold them securely and closely.
A child with a bleeding disorder will need the same amount of discipline as any other child. Since physical punishment has little benefit and may cause bleeding and bruising, avoid spanking your child. There are other ways to discipline children. One way to discipline a younger child is to remove him from others for a "time out" period. Since a small child needs to connect the punishment with the behavior, act right away. An older child can be disciplined by withholding privileges. It helps to choose a privilege that is related to the wrongdoing. For instance, a teenager who stays out too late may not be allowed to go out with friends for a week.
Just as punishment should be given right away, so should rewards. Tell your child when you are pleased with good behavior. You can help your child learn the right way to behave. Give her or him chances to try the behaviors you want learned. Most children are eager to please. They will feel good about themselves when parents praise their actions. You can also build a child's self-esteem by giving responsibilities that are right for his or her age.
Make it easy for your children to talk to you and you to them. Tell them what you expect of them and praise them when they do it. Even though you may not approve of certain things they do, you can try to understand the feelings behind their actions. If you can learn to accept their feelings without judging them, you will find that your children are more likely to open up to you. Choose your battles – fight about the big issues only. Endless power struggles with a child will make you both miserable.
Never scold a child with hemophilia for having a bleed! It may make him less likely to tell you about them. It is impossible for him to avoid all bleeds anyway. Some will just start for no clear reason. Help your child learn to detect bleeds and always praise him when he reports them. He will gain the habit of always treating bleeds early. Teach your child that getting factor is not a punishment for a bleed. It is something helpful that will prevent more pain.
Your child will want to try to do things you wish she or he would not. Keep in mind that a child needs to take a certain amount of risks. This is how children learn to make decisions and be independent. If your child insists on trying a risky sport or activity, you might allow this as long as he or she follows certain rules. For instance, you might allow a desired sport if your child wears a helmet and pads. You may require your child with hemophilia to take factor first.
Some parents become overprotective of their child with a bleeding disorder. Although all parents want to protect their children, an overprotective parent is too concerned or cautious. The parent passes on this worry to the child.
Some overprotected children become helpless and always afraid. Since they never take risks, they don't learn to do things on their own. Other children react by becoming daredevils. They take needless and dangerous risks to prove they are normal.
To avoid overprotecting your child, you must first accept that it is impossible to prevent all bruising and bleeding. Your child needs room to grow. Help him or her choose physical activities that are right for his or her age. Teach the difference between taking reasonable risks and taking foolish chances. Sometimes there may be bruises and bleeds, but that does not necessarily mean you are going in the wrong direction.
Take the same safety steps with your child who has a bleeding disorder that you do with other children. Since being too cautious can make a child fearful, try to limit how often you tell him or her to be careful, not to run, not to do something, or to be sure to do something.
Another way parents react to a child with a bleeding disorder is to become permissive. A permissive parent allows a child to do more than the child would be allowed if he or she did not have a bleeding disorder. A child who is given too much freedom can become an impulsive, demanding child who does not know how to follow rules. He or she does not learn how to set limits for himself or herself. Inwardly, she or he may feel insecure. Some children feel insecure to the point of feeling unloved.
Children need to know that their parents will help them control themselves. Although too many restrictions can hurt, consistently enforced rules help children learn how to handle themselves. The rules and limits you set for your child who has a bleeding disorder generally can be the same as if she or he did not have one.
It is not unusual for a child with any long-lasting health problem to have a parent who is either overprotective or permissive. Parents are looking for ways to cope. Sometimes the behavior of one parent goes against the behavior of the other parent. For instance, the mother may limit what the child is allowed to do but the father is permissive. The most successful parents work as a team and try to be consistent.
How you react to your child's bleeding disorder will affect his or her growth and development. The first thing to do is to recognize your feelings and coping methods. They will affect your child, your relationship with each other, and your relationship with the other parent. Look at the outcome of your parenting style to help you decide if you need to change it.
It may be helpful to meet other parents of children with bleeding disorders. If you would like to get together with other parents, another family, or a support group, call your hemophilia treatment center.