Tips Parents And Other Caregivers Can Use When Dealing With Childhood Onset Lupus
A child has fewer coping skills when dealing with a chronic disease such as Lupus. Adults in their lives would do well, to be sensitive to their need for emotional and social support.
Try not to force Lupus-related issues if the child is resisting. It is important to try to be calm during discussions and present a positive attitude. Patience really is a virtue when dealing with a child on most issues, when trying to manage a chronic disease; things can easily get out of hand emotionally. Take a break, give everyone space and then resume the discussion. This may be a good time to try to put yourself in their shoes (so to speak).
Depending on the age of the child, try to involve the child when planning daily life activities around their disease. The more the child understands the disease the more in control the child will feel. Education is an important aid to understanding any disease. Your pediatrician can provide you with pamphlets for your child, your child’s teacher, school guidance counselor, even their friends.
Allow the child to experience life as much as possible allowing for the disease as necessary. There are many ways to give your child opportunity to socialize with peers that will not fatigue them, such as having small groups of friends over or one on one get togethers in a relaxed atmosphere.
Not every child experiences psychological issues with Lupus, but if they do, adults should try to be patient and compassionate. Understanding how the child feels and assuring that they get the kind of professional help they need are important things you can do.
Teens may have an especially difficult time accepting the limitations of chronic diseases such as Lupus. Helping them by answering questions, giving them information and being able to listen to them, when they are ready to talk are all ways to help them cope. They may have difficulty grasping how their future will hold when Lupus is such a controlling part of their life. They need answers and a positive attitude.
Mentoring with other teens that are also coping with Lupus may help your teen to feel that they are not alone in dealing with everything.
You may need to be your child’s advocate with the adults at school. It will help your child if the staff at school can be educated concerning the disease.
Children and teens dealing with rashes and bloating may have a difficult time when it comes to peers and trying to impress or to fit in. It is important that treatment be followed to reduce these symptoms. It is also important that whenever possible peer issues that relate to disease issues like physical symptoms or fatigue, be addressed by a physician or therapist and the school counselor.
It is very important to try to decrease the urge to overprotect your child. Be your child’s advocate, but allow your child to participate as much as possible in school activities and sporting events. Monitor how your child is handling these situations but give your child some freedom when it comes to making age appropriate decisions.
It can sometimes happen that siblings can feel that the child with Lupus gets a lot of attention, even if that attention involves medical appointments or treatments. Siblings who are old enough to should be helped to understand what Lupus is and what it means to their sibling who has it in regards to physical and emotional symptoms (without embarrassing the child concerned).
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