Written by Caroline Meyer
Learning that your child has a chronic illness or disability can be a shock. It may seem rather devastating at first and people may feel helpless and anxious about having to face a future with a child that has special needs. Becoming a parent is a happy time but full of its own stress and anxiety as well. Adding in unknown factors of dealing with major health problems, chronic illness or disabilities may seem like a lot to bear. Yes, it is not going to be easy but there are ways to cope to make it easier for your child and your family in general.
Learn as much as you can about the added requirements and special needs that you child may require in order to deal with the day to day care of your little one. Knowing what may happen and how to treat the condition can reduce the burden somewhat as knowing what to do in different circumstances can help reduce the anxiety and stress of imagining situations that you cannot control. Knowledge will help you plan better and advocate for your child. As your child gets older, they may also learn to be able to manage their situation better themselves. You will need to learn how to teach and to guide them in the process. You can also better help them advocate for themselves and learn to prepare for a world in which they are different and which may not always offer the same conveniences to them that able bodied or children without health issues may receive.
Teach your child about their condition in an age-appropriate way. Help them learn to know their symptoms, triggers and other issues over time. When they are very little they may not understand, but by the age of around 10 they will be able to grasp more complex issues and better learn about their condition. Make sure that you continue to give information and answer your child’s questions as they grow-up. As they are better able to understand, allow them to learn more complex details as well as how to manage their own care as far as possible at that age. This will allow them some control as well and allow them to become more self-sufficient. This is not true for all illnesses and disabilities but should factor in for many children living with disabilities and chronic illness.
Help your child cope with the stress of living with disability and chronic illness. They may have to deal with bullying, severe treatments, living with pain, surgeries and even the potential for a reduced life span. There are unfortunately no cure-alls for handling stress and it may also be age related in how the child is able to cope with high levels of anxiety. Allow your child to discuss their emotions and thoughts with you while you remain calm and listen to what they have to say. Be supportive and do not overreact. While you may be upset knowing your child is unhappy or in pain, you do not want to change the focus to how you feel but concentrate on their feelings. Talk to them about their treatment and what is expected going forward. Knowing what is to come can also help reduce anxiety. If you are not sure about a procedure or process that is to come, talk to the child’s doctor so that you can discuss it with your child and take some of the fear away. You can also try and expose them to the places where procedures will take place prior to it happening to make them feel more comfortable before an operation or procedure. Allowing them to talk to other children in the same predicament or that have gone through the procedure may also help make them feel less afraid.
Try and get involved in support groups and where possible, allow your child to meet children in similar predicaments. Knowing they are not alone and that there are others with similar illnesses or disabilities can help them come to terms with their differences. Be open about their condition so that they don’t feel restricted in what they can or can’t ask about when it comes to their care. Where possible, allow them to make some choices when it comes to their care so they feel they have some control over their own health. Support them and let them know they are strong and have many options despite their situation. Encourage them in what they do and highlight their strengths. Let them do what they can for themselves so they can learn responsibility and ways to manage and cope with their conditions.
It is not easy and make sure you also have some time to relax now and then as well so you don’t become burnt out. While it may be more difficult, loving and caring for a child with special needs can be rewarding as well. Seeing your child progress and persevere through things that would be easy for other kids can seem like a miracle. Offering love and support may seem like very little while you are dealing with medication, surgery, therapy and so forth, but it is really the most important part of taking care of a child with a chronic illness or disability. If you are struggling to cope, reach out to your doctor, family, friends and support groups.