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Dealing with Grief and Darkness

Grief and Darkness

Each day we live can bring us joy, laughter, relief, and love. It can also bring us sadness, pain, and loss. Although the good events in our lives come and go easily, it can be very difficult to experience the unpleasant events that life brings our way. Our children will likely be experiencing these events alongside us, and we are responsible for guiding them through it while also managing our own needs. Helping typically developing children cope can be challenging, however for parents of children with special needs, it can be an even more complicated process. Parents of children with special needs may experience the additional complexity where their children do not comprehend the event or have issues communicating their feelings. This can be an even larger concern when our children are rigid in their schedules or needs, and the loss of consistency creates quality of life issues.

While there are many definitions of grief, from a behavioral lens, grief can be viewed as internal (private) events caused by a change in a routine pattern of behavior. Grief is both an individual and universal experience that can occur at any time during one’s life. It can come in the form of family life changes or may come from events in one’s community. Worldly events can have a profound impact on an individual also resulting in genuine grief whether directly impacted by the events or experienced vicariously. Below is a non-exhaustive list of family, community and worldly experiences that can create these feelings of grief.

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Family Changes:

Community and Worldly Events:

It important to recognize how these events may impact our loved ones, as grief presents in many forms; looking different from person to person. A grieving child may show emotional, physiological, cognitive, and behavioral signs that are detectable. Emotional signs of grief may include irritability, nightmares, flashbacks, fear, and anxiety. This may be appear in the form of crying more frequently, or distancing themselves from others. Physiological signs of grief may include difficulty sleeping, illness (upset stomach, aches, and pains), exhaustion, or oversensitivity to noise and light. Some signs of cognitive effects include difficulty concentrating, memory issues, or regression of skills.

Grief may impact behavior in several ways: restlessness, loss of appetite, presentation of new problem behaviors and/or increases in the rate, duration, or intensity of existing problem behaviors. When considering the external effects of grief, it may be best to get the advice of someone who is diagnosed with Autism. Elizabeth Graham wrote the article, “Bereavement and Autism: A Universal Experience with Unique Challenges.” [1] In her article, she discusses the idea of grief from the lens of someone who has experienced a loss of a parent. She mentions difficulties in adapting to the change, challenges in social communication, and perseveration on the individual or topic of death.

Identifying grief is only the beginning of anyone’s experience. We will also want to consider how a parent or loved one might approach guiding a child through a loss, regardless of the change. There are several strategies that experts and individuals with special needs have recommended. Know that not all strategies will work for everyone, and that they should be individualized or catered to the unique needs of the child.

One of the first areas we need to consider is whether or not the loss will be in the future. We can better prepare for the possible negative impacts if we can predict it. Elizabeth Green mentions the idea that we should consider certain factors about the grief including the child’s relationship with the loss, how the loss occurred, and any other stressors that can be occurring at the same time. . These factors may change our approach in how we support the child experiencing the loss. She mentions the ideas of being clear in communicating the loss, and an understanding that this does involve abstract thinking. For example, a parent should refrain from saying, “She passed away.” It’s better to be as clear and concrete as possible. A parent could say, “She died, and we will not be able to see or talk to her anymore.”

Remember that death is not the only event that could result in grief, and a parent may need to have different conversations. For example, a parent discussing divorce with their child may need to reassure the child that the divorce is not a result of their behavior. They should prepare the child for the upcoming changes that will result from divorce and how it will impact their routines or lifestyle changes. This goes for many different types of loss as stated above. Some other proactive approaches for general grief are pairing a new caregiver, changing routines ahead of time, and researching or attending support groups.

But what can we do if the event has already occurred? As stated, there are varying events that can result in feelings of sadness, anger, and grief. One important thing that may be uncomfortable for a parent will be to accept that they have this feeling and try not to fix it. Sit with the child and guide them in the experience. Use this as an opportunity for teaching them skills for how to manage grief. One great tool is enlisting them to choose their supports. Time spent with a hobby or a peer could result in a brief reprieve from the feelings associated with grief. Seeking services or guidance from a mental health professional is a great way to ensure that the child receives individualized support in their grieving process. If cultural or religious practices are a norm in the family unit, invite the child to partake in any events because it can foster an environment of inclusion where they can experience grief alongside others.

Although some children will accept guidance easily, others won’t. A parent should be mindful of how to best approach a child that displays problem behaviors during grief. Parents should consider that they are not inadvertently rewarding inappropriate behaviors. For example, a parent may want to provide comfort for a child crying, but not for aggression or property destruction. A parent may need to limit the volume of demands placed during a time of grief. However, the parent should still make sure the child goes through daily routines (e.g., brushing their teeth, cleaning their room) while supporting them through the grief. The parent will want to teach new coping skills las stated above. A parent also needs to consider how their own behaviors can affect the child’s.

Remember that the time it can take anyone to experience grief is different, and you may need to consistently look for any indicators that they are still in the grieving process. This can take time and ongoing support. Grieving is truly an individualized process and can look different for each child. It’s important for us to understand this and guide each other through any loss we experience.

ABOUT AUTHOR Holly Downs is the Director of Ethical Compliance at PBS Corp. and an instructor at Capella University. She is a certified behavior analyst with over a decade of experience in various populations.

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This post originally appeared on our September/October 2021 Magazine [11]

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