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Coping with the diagnosis of WAGR Syndrome
During pregnancy, most parents have hopes and dreams for their child. When the baby is diagnosed with WAGR syndrome, those hopes and dreams are suddenly changed, and we feel shocked and confused.
Shock Parents often feel “numb” for a while after receiving the diagnosis. This is your mind’s way of protecting you from more pain than you can handle. As shock fades, you may experience other reactions, such as forgetfulness, feeling as if you are in a bad dream, difficulty concentrating, or denial.
Sorrow When you are told your child has WAGR syndrome, it is natural to feel sad. Most parents need to go through a period of mourning for the child they expected to have. It will help if you express this feeling, and if the people around you allow you to cry and to talk about how you feel.
Anger Most parents ask, “Why did this happen to us?” and many feel angry. It helps to talk about this feeling, too. It is very common to want to assign blame to someone or something. Many parents wonder whether something they did before or during pregnancy which caused their child to have WAGR syndrome. It’s important to remember that there is nothing you could have done or not done to cause or prevent this condition.
Guilt Not all parents feel guilty, but many do. This is also a natural reaction, even though the fact that your child has WAGR syndrome is certainly not your fault.
All of these reactions and feelings are perfectly normal. They may never go away completely, but as time passes they will lessen. Joining a support group can be a good way to cope with these feelings, because it’s comforting to know that others have felt the same way. It can also be helpful to learn from other parents, and to share the lessons you have learned, as well. For information about how to join the International WAGR Syndrome Association, see http://www.wagr.org/joinus.html
Your Marriage
The rate of divorce among parents of children with special needs is very high. There are probably many reasons for this. Men and women often handle crisis differently, and the birth of a child with WAGR syndrome is a crisis. Mothers frequently react with tears, and with a great need to talk and express their feelings. Fathers on the hand may feel the need to contain their emotions by not talking about them. These conflicting needs and coping styles can make each partner feel misunderstood and alone.
But simply being aware of and accepting these different needs can be a big help. Couples do need to communicate, but a little compromise can go a long way, and can help each partner to have a sense of working together for the benefit of the family.
If you find that your marriage is really suffering, consider couples counseling to work through this difficult time. Parents of older children often say that finding constructive ways to weather this crisis brought them closer together.
Siblings
Children usually take their cue from their parents—if you are positive about the new baby, they will be too. You can explain to them that this new baby may need extra care, and that he may learn more slowly than they do. You can also reassure them that in time, this little brother or sister will be a great playmate, and someone they will grow to love.
Most research shows that children who have a sibling with disabilities get along well with them, and are fond of their sibling. Many adults report that growing up with a sibling with disabilities taught them a great deal about understanding, responsibility, and compassion.
Grandparents
Grandparents can go through many of the same feelings as parents do, as they grieve for both their child and their grandchild. Denial of the child’s diagnosis is common, and usually reflects an intense need to believe that all will be well. Whenever possible, include grandparents in your child’s care, and share information with them. If they know that children with WAGR syndrome do best when their caregivers are both realistic and optimistic, they may be better able to accept their grandchild just as he is. A grandparent’s positive and encouraging attitude can be a tremendous asset for a child.
Friends and Others
Friends, co-workers, strangers, and even relatives can unwittingly say thoughtless or hurtful things out of embarrassment and ignorance. Again, most people will take their cue from you. If you are positive about your child and his future, they will learn to be positive also.
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How To Have A Great Relationship With Your Child's Physicians
Dealing with lots of different doctors is usually par for the course with WAGR syndrome. A good relationship can make things easier for everyone. Here are some tips for building a partnership that works:
1. Be Prepared
- Write down your questions. Take the list with you to each appointment. Write down the answers as they are given.
- Take someone else with you, if you can. If your child is fussy, this other person can care for him/her while you are talking with the doctor.
2. Prepare the Doctor
- When the doctor comes into the room, tell him you've been looking forward to this visit, as you have some questions. Ask him whether he'd like to address these questions now, or after the exam?
- Start your list of questions with an introduction. Explain that you are aware that your child has an unusual condition, and that caring for her will require a partnership between yourself and all of her specialists. By being an informed parent, you hope to make his job easier. Say this last part with a smile :-)
3. Be Assertive
- Remember that a positive attitude will get you a lot further than a negative or aggressive one.
- Try not to be intimidated. Doctors put their pants on one leg at a time, just like the rest of us. They also appreciate patience and understanding as much as the rest of us, and these can go a long way toward building a good relationship.
- If the doctor says that his time is limited, it may well be. Spending 30 extra minutes answering all your questions could result in a waiting room full of angry patients for the rest of the day. An assertive response would be to suggest another appointment just for the purpose of addressing your questions.
- If the doctor seems reluctant to discuss things with you, say so. "Dr Smith, I would really appreciate more detail on this, if that is possible. I sense that you are reluctant to say more." That puts the ball in his court, and gives him a chance to explain.
4. Remember that good relationships take time to develop, and you are in this for the long haul
- Think about the things that are important to you in a physician: knowledge...skill...experience, for example. Then there are things that are nice, but not vital to good care, such as a sense of humor, or a talkative nature. Keep these priorities in mind.
- Educate yourself about the condition. But be careful about how you present information to the doctor. For example:
Don't simply give him reams of emails or journal articles to read. He doesn't have time. *Know the information yourself* When you do volunteer information, do it in a positive way. You can say, "I have read that children with Aniridia should be examined for glaucoma every 6 months. Could we discuss the pros and cons of doing an exam under anesthesia?" If he wants to know "where you read that" then you can certainly present the info at that time (see Tip #1 :-)
- Cultivate a good relationship with the doctor's staff, too. They can be very helpful allies. I have been known to bring a plate of brownies with us to appointments, and it's amazing how people remember such a small gesture.
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