Before parents ever have a child, most have already imagined what they would look like, where they would take their first steps, and what sports they will play. No parent dreams of having a child with a disability. The fact is that the prevalence of having a child with a disability is growing. The American Community Survey (ACS) estimates the overall rate of people with disabilities in the US population in 2016 was 12.8 percent. When you learn that your child has a disability, you lose some of that dream and may have feelings of grief kick in. Yes, grief. It is still a loss of a child, one that is still typically developing.
Grief is a natural response to loss. Before one can get to a sense of acceptance, one has to understand that each stage of this process is natural and acceptable. It is also important for those around you to understand what grief can look like to better support you. Let’s go through the stages of grief as it relates to learning your child has a disability.
Stage 1: Denial: A common defense mechanism. “This can’t be happening. This Is not real.” Being in denial helps us cope and protect us from the immediate shock of the loss, numbing us to our emotions.
Stage 2: Anger: Once the denial wears off, parents begin to feel angry. These intense emotions are redirected to inanimate objects, complete strangers, friends or family. During this stage, there are many stresses on marriage and family.
Stage 3: Bargaining: The third stage involves the hope that the parents can somehow cure their child. The normal reaction to feelings of helplessness and vulnerability is often a need to regain control through a series of “If only” statements. This is an attempt to bargain. Guilt often accompanies bargaining. We start to believe there was something we could have done differently to have helped change the outcome.
Stage 4: Depression: During the fourth stage, the parents start to blame themselves. They think they did something to cause their child to have a disability. In this stage, parents also start to worry about the costs of support services, medical bills, etc. They think about the future and who will care for their child when they are gone.
Stage 5: Acceptance: Parents begin to look ahead but in a positive light. They commit to do whatever it takes to achieve the skills that the child needs to be independent. They begin to understand that it is more important to find what it means for their child. Parents see the baby steps of success and understand how these achievements are much bigger. They see their child as they are and not defined by their preconceived ideas. Yes, they may struggle with certain activities, like sports, but they might flourish in music. Looking at your child, not only will you see how happy he/she is, you will realize the simplest things that make your child smile will make you smile too.
I have seen, by working with families of children with disabilities, that humans are emotionally resilient when faced with adversity. The greatest gift is having a child with special needs. It is also important to know that there are resources available to help support at every stage of grief. It is critical to understand that your grieving process is unique to you. It may hard, but do reach out to those around you who care about you and see them face to face for emotional support. It is also imperative that you take care of yourself psychically, by eating well and sleeping.
Above all, recognize the difference in grief and potential depression and or anxiety. Seek out specific professionals, such as psychologist, counselors, or physicians or sites like AutiZm& More who can help you through the grieving process. Also check out books that help children with anxiety coping strategies like, “Winnie & Her Worries,” and books about autism awareness and acceptance, like, “My Friend Max: A Story about a Friend with Autism,” both available on Amazon. It’s okay to take baby steps, just make sure to seek support and remember you are not alone.