Grief and Emotions: Coping with a Special Needs Diagnosis
Jennifer Schuler, M.S., LGPC
Each and every parent dreams about who their child will be before he or she is even born. Parents wonder about how their child will look, if they will be athletic or musically inclined, and what their child’s future will hold. They create plans for their family for how they imagine parenting to be. When parents are faced with the diagnosis of a physical or developmental disability, it forces them to realize their life and the life of their child might not be as they originally thought. Parents may feel like they are grieving the loss of the life they had planned for. Elizabeth Kubler-Ross (Kubler-Ross, 1970) outlined the five stages of grief after losing a loved one, including denial, anger, bargaining, depression, and acceptance. While the stages of grieving a special needs diagnosis are similar, parents often face additional emotions and stages, including fear, guilt, powerlessness, and rejection (Smith, 2001).
Prior to receiving a diagnosis, parents typically notice that their child is not developing like other children. This can be a difficult and confusing time, causing moms and dads to delay bringing their concerns to their physician. Parents hope that their worry might be a phase or a quirk. They deny the problem in hopes it will disappear over time. However, remaining in a state of denial for too long can delay the process of getting a child the help and support they need.
Upon receiving a diagnosis, parents may feel very angry. They question, “why my child?” or “why my family?” Caregivers may lash out at each other or even their child out of frustration. Simultaneously, fear can also become an overriding emotion. Parents are scared about how to balance therapies along with daily living activities, and how to maintain a sense of normalcy in their lives. It is at this point that most parents are able to move forward, research their child’s diagnosis in depth, and seek out help in terms of therapy.
Moms and dads frequently feel guilt over their child’s diagnosis and wonder what they did to contribute to it. This can be emotionally exhausting and draining. In most cases, there is nothing a parent did or didn’t do to cause their child’s special needs, including activities mom did during pregnancy or parenting styles used when their child was a baby. A child’s disability may be the result of genetics or environmental factors that parents have no control over.
As time passes after their child’s diagnosis, parents may experience other emotions such as confusion and powerlessness. They ask what they did wrong, why therapy is not progressing, or even if their child is in the correct therapy. Parents feel powerless that they cannot do more to help their child or take away their challenges and struggles.
Additionally, parents may be disappointed in many different aspects of their life. They may feel let down about activities or trips they cannot take because of the unique challenges of their child’s diagnosis. They may feel upset that they are not doing enough at home. Often, parents face the most disappointment over the rejection they feel from friends and family members. Caregivers feel far removed from their loved ones who do not understand the difficulties of juggling doctors’ appointments, therapy appointments, and equipment or materials a child needs to function in the world.
Eventually, parents reach a stage of acceptance of their child’s diagnosis. While they may still experience sadness and loss over their child’s special needs, they are able to be an active participant in creating a plan and working towards solutions. Parents can take time to care for their child, also take the steps needed to help themselves.
It is important to remember that these stages don’t follow a set order or timeline; there is no set of rules for grief and coping with a special needs diagnosis. Parents may flow in and out of stages at different times of a child’s life. However, no matter what stages of emotions a parent is currently experiencing, it is important that parents and caregivers care for themselves, as well as their child. There are many different ways that parents can practice good self-care skills while still devoting time and energy to care for their child.
Parents should reach out to local support groups, such as the Autism Society of America. These groups can serve as an excellent source of information on therapies, doctors, and how to access funding. Additionally, it gives parents and opportunity to connect with other parents who are walking the same path. This may help parents feel less isolated and alone in their journey. The support of others can help parents work through feelings of confusion, guilt, and disappointment.
Parents should also ask for help from loved ones around them. Often, people want to help out, but do not know how. Parents should not be shy about telling others exactly what type of help they need, such as cooking a meal or watching their child so the parents can run errands or have time to themselves.
It may also be helpful for parents to look for professional help for themselves in terms of counseling. There are a wide range of very intense emotions that accompany a diagnosis of special needs. An objective third person can be helpful in sorting through the emotions and helping parents create a plan for maintaining their own health. The help of a professional can assist a parent in working through any stage of the grieving process, including when to seek out help for their child, how to manage their anger, and coping skills to deal with guilt.
Parenting a child with special needs comes with a unique set of gifts and challenges. Parents should allow themselves to experience all of the emotions that come with this journey and remind themselves that it is perfectly normal to have conflicting feelings and emotions. By obtaining a diagnosis and seeking out therapy, parents are taking a huge step in being an advocate and doing their very best for their child, and each other.
Jennifer Schuler, M.S., LGPC is a Family Trainer at the Monocacy Neurodevelopmental Center