Not only do the parents need to learn how to cope with their child's chronic illness and provide unconditional love and support, but also they need to help their child cope with their condition. Children with chronic illnesses often deal with more stress than other children. Children with a chronic illness have to cope with "why" they have a condition, how come other children don't have what they have and why do they have to get painful injections, surgery, chemotherapy, etc. Unfortunately, there are no simple ways to help your child avoid the stresses they experience when having a chronic illness but there are some ways parents can make the situation a little easier on their children.
- Listen: whether your child has a chronic condition or not, it is always important to always listen to your child. What feelings is your child experiencing. Does he/she feel sad, frustrated, angry or hopeless because they have a chronic illness? It is valuable for a child to have an understanding that they can talk to their parents about how they feel and have their feelings validated.
- Ask how your child is feeling? How was your day?
- Explore their feelings...
- Ask questions...
- Don't be afraid to talk: it is important to encourage open communication with your child regardless if you child has a chronic illness or not. Having open communication with your child is key and will lay the foundation for their adolescent and adult years. By not talking about your child's chronic illness, you are creating ineffective communication patterns and masking feelings that need to be shared and explored. Both you and your child are going through a very challenging experience and it is important for you to collaborate and work as a team. By working as a team you will develop a strong parent and child relationship.
- Educate your child about their chronic condition: your child needs to know what their condition is all about. If you think about how you felt as a parent when you were uneducated about your child's chronic illness, you know how the unknown can provoke anxiety, fear, sadness, and feelings of helplessness. The same goes for your child. If they don't know what their condition is, they will have very similar feelings. The more you and your child know about the condition, the more empowered and in control you will feel.
- If your child is young, I would recommend researching children's books that can help explain their condition in an age appropriate manner. These books can also be helpful during your child's school years so he/she can share the books with their classmates and teachers.
- Prepare your child for medical procedures so they know what lies ahead. Learn ways you can help your child be distracted during procedures (i.e. sing songs, read books, use toys). Distraction can be very helpful and alleviate some of your child's anxiety and fear.
- Encourage your child to spend time with to other children with a chronic illness: your child may feel alone if they don't know anyone else with their chronic condition. By spending time with other children with a chronic illness, they can learn from them and gain a sense of comfort in knowing that other children are going through similar experiences. If you think about how alone you may have felt when you found out your child had a chronic condition, you can begin to understand how your child may feel when they are at school and there is no one else at school that has that condition. They may feel isolated and uncertain and it is always positive to connect with others.
- Emphasize your child's strengths and boost their self-esteem: it is always important to express all of the wonderful strengths your child has. The goal is to boost your child's self-esteem and ultimately increase their confidence. Don't be afraid to let your child know how wonderful they really are!
- What great qualities does your child possess?
- Communicate to your child: "You did great at your baseball game today or way to get an "A" on your test."
- Help your child lead as normal a life as possible: just like you would do with any child, give provide your children with choices and responsibilities and don't forget to set rules, boundaries, limitations with both rewards and discipline. Just because your child has a chronic illness does not mean they are off the hook and can do whatever they want. Children strive on rules, boundaries and limitations, which contribute to their learning and development.
- Maintain family routines and traditions as much as possible. Children also strive on consistency and routine. When your child has a chronic illness, maintaining routine can be challenging, but the goal is to do the best you can.
Helping your child cope with their chronic illness can be challenging as a parent. Most parent's wish they could wave a magic wand and their child's chronic illness would vanish and your child would not have to deal with the additional stress and challenge. However, this is just not the case. As a parent you are your child's role model. So once you can accept that your child has a chronic condition, the sooner your can help your child cope with their feelings and accept it. The goal is to work together as a family and overcome challenges together. Remember, you are only human and can only do so much, but you do the best you can and that is what is important!