How to cope when the words don’t come

Imagine someone close to you disappears. She no longer shows up on the day on which she always visited. She does not call or write. No one says where she has gone or if she is coming back. To make matters worse, you cannot ask about her. You experience feelings of sadness, anger, disappointment, and grief, to name a few. The only way you have to express yourself is through your behavior. You may retreat into yourself or lash out at others, but those who provide your care do not understand the source of your behaviors.

This is the experience of too many adults with intellectual disabilities (ID). Because of communication difficulties, social stigma surrounding death, and caregivers’ lack of understanding, the impact of death on people with intellectual disabilities is often overlooked or trivialized.

The death of a loved one is a difficult thing to endure. When this happens, people may look for support in family, friends, or professionals. They may tell their story or hold it in. People with ID also experience feelings associated with loss – fear, anger, sadness, disappointment, loneliness, etc. – however, they may be limited in their choice of expression. The expression of these feelings may be viewed as “acting out” and may be delayed, sometimes occurring months or years following the loss. People with ID need support in identifying and coping with these feelings.

In the last century, people with ID have experienced a positive shift in health, life experience, and life expectancy. With the increase in life expectancy and community involvement has come the opportunity for an increased number of significant relationships, and thus an increased opportunity for experiencing loss. What hasn’t evolved as quickly is the recognition of the population’s ability to experience loss or the development of skills to help one cope with the loss.

Music therapy is one way to address the needs of people with ID who have experienced a loss. I explored the use of music therapy interventions to address the feelings associated with loss – sadness, anger, loneliness – in a nine-week group music therapy setting. Music interventions such as improvisation allowed participants to communicate without words. Songwriting was used as a way to aid participants in organizing and expressing thoughts and feelings related to their loss. Songwriting was also adapted to accommodate a variety of communication aids such as pictures and voice output devices.

The findings of this study led me to consider the fact that emotions such as sadness and anger are experienced not only when a death occurs, and that the ability to recognize, identify, and cope with feelings is important to people with ID. In my current clinical work, I routinely incorporate emotional recognition and coping skill development in treatment of adults with ID who exhibit difficulty with these skills.

Regardless of your clinical orientation, the following five tips may be useful in treating adults with ID who are experiencing a significant loss.

1. Consider communication: If a person uses communication aids, these will be helpful in communicating about the loss.
2. Keep it concrete: Don’t be afraid of the word “death.” Many times, we try to make death more palatable by making abstract references to the “seasons of life” or “crossing over.” For people who have difficulty with abstract thinking, these references may increase confusion. The use of picture books written for adults may be helpful.
3. Honor the reality of one’s feelings: The inability to express one’s feelings does not diminish the intensity or felt experience.
4. Recognize the significant relationships: Family members are not the only significant people in one’s life. Due to institutionalization and custodial care, significant relationships may be with staff. The significance of a familial relationship may be related to the length of time one lived at home.
5. Teach coping skills now: The ability to recognize and cope with feelings is key in one’s ability to cope with a death. For people with ID, these skills may need to be taught with intention and in a formal setting (therapy, education). The acquisition of skills will be easier if the person is not currently dealing with a loss.

There is a growing awareness and body of literature to support the treatment of mental health issues in people with ID, including those who experienced a significant death. With continued research and acceptance comes hope for people with ID to receive the treatment and support they need to cope and live fuller lives.

Featured image credit: Dandelion by George Hodan. Public domain via PublicDomainPictures.net.