When we think about grief and loss, it is not typical to think of the birth of a child in these terms. But, what occurs when a child is born with a disability or is diagnosed later in life? What are the emotions that the parents go through in this situation?
Many would say that when you have a child who struggles with learning, or who has been identified with a disability you, as the parent, will go through the five stages of grief and loss many times over the course of your child’s life but especially during their educational journey. As you go through life with a child who has challenges, these emotions can be triggered again at each stage or transition phase. It is important to recognize and address these feelings rather than push them down and ignore them. By understanding the grief cycle, you can start to make sense of emotions and reactions you may have experienced in the past and know that they are bound to surface again.
The most well-known model for the grief cycle was described by Elisabeth Kubler-Ross in response to death of a loved one but this same cycle is also useful in other life crisis’ such as having your child diagnosed with a disability.
•Refusing to accept facts or information relating to the situation at-hand. How many parents, have muddled through, convinced that there is nothing “wrong” with their child or heard messages such as “He will outgrow it and everything will be fine.”
•Emotional upset at ourselves or directed toward others. Often parents blame themselves by saying “If I had just done something earlier” or lashed out at a teacher who clearly was not “getting” the situation with your child and inadvertently making it worse.
•Asking a higher power for help or trying to compromise a situation to “lessen the blow.” Parents may believe “If I just try harder to help him, this will all be better”; “If I hire a tutor, it will make everything better”; “If I negotiate with the teacher, he will change my child’s bad grade.”
•Feelings of loneliness, panic or guilt; feelings of devastation and sadness at each difficult juncture. You may feel like you’re the only parent or family going through this and that no one really understands what it is like. Why try to talk to anyone about the problem when it is so difficult to explain? When you do try to talk to friends or family, they really just don’t seem to understand the situation or truly understand how painful it is to see your child struggle.
•Acceptance allows you to come to terms with the reality of the situation. As a parent you can come to terms with your child’s disability and accept them. Success is measured in many other ways. As a parent, you will no longer compare your child to other children while realizing all the wonderful qualities he/she does possess. You know that you are your child’s best advocate and have the highest expectations for your child.
In the next article, you will find some helpful hints to reaching acceptance for your child with a disability.