I had the opportunity to take a course regarding working through parents’ reactions to a diagnosis of a child with special needs. Just like every child is different from one another, so too is the process parents may have in response to their child’s diagnosis. Some may grieve the diagnosis – whether that be immediately following it or delayed in the weeks and months after.
Some may be familiar with the Kübler-Ross model which describes the grieving process through five different stages including: denial & isolation, anger, bargaining, depression, acceptance. Parents and caregivers may be going through some of these stages. A thing to keep in mind is that their experience with these is not always linear and stages can come and go.
Within the denial stage, statements such as “I don’t believe in this diagnosis; this is not true” may be heard. Parents may try to explain that their child does not exhibit behaviors at home which may be a true reflection or a denial of what is going on with their child. Avoidance (not ready to hear what is to be said about their child) or elation (joy at finally receiving a diagnosis) may also be behaviors accompanied with this stage of grieving.
Within the anger stage, parents may express their frustration at the clinician or other physicians. Observing experiences that other typically developing children are experiencing can also breed frustration. Associated feelings during this stage can also include frustration, anxiety and irritation.
Within the bargaining stage, parents may be trying to do whatever it takes to help their child. Often times, a parent may come in asking us to “fix” their child; however, it’s helpful to explain to them that we can use strategies and supports to help their children accomplish their goals. Desperation can be an associated feeling for this stage.
In the depression stage, some parents may feel that their child’s behavior or life will not get better. Detachment from their child can be seen. Feelings of being overwhelmed or helpless can also be experienced during this time.
And finally the acceptance stage. In this stage, parents grow to figure out their new normal. The diagnosis is understood and parents know what they need to do to help their child.
I think it’s important to keep in mind this framework of the grieving process, while also understanding the additional hardships parents may experience including emotional and financial distress, sibling rivalry from siblings of those with special needs, marital disruption or low family cohesion.
As clinicians, a simple strategy to use to help parents talk through their process is asking open-ended questions. Active listening (focusing on the speaker, listening for specific details, paying attention to responding and refraining from talking) can be very effective. Active listening can help build rapport with the parent and even help you obtain information to help you with your treatment or assessment process. Open-ended questions that may be helpful to present to the parent include, “How are you feeling about the diagnosis? What progress have you seen since the diagnosis? How are you taking care of yourself since learning about his diagnosis?”
The takeaway here is that we as clinicians can always strive to partner with parents to better support their child and help them achieve their goals.
References: Perspective-Taking: Understanding Challenges, Fears and Joys of Parents of Children with Special Needs: Christy Jones-Hudson, MA, IMH-E