The Role of Grief in Working with Parents of Children with Significant Disabilities
Most school mental health professions were trained to understand grief through the lens of the pioneering Swiss psychologist, Elizabeth Kubler Ross, who posits that people experience five “stages” of grief; denial, anger, bargaining, depression, and acceptance. Other mental health professionals may have learned about Stroebe & Schut’s dual process of grief or Worden’s four tasks of grief and mourning. Although each model is distinct and has added increased insight and richness to our understanding of an intensely personal and challenging process, the models do have common themes. All make reference to “processes”, “tasks” or “stages” and the feelings one encounters in those stages.
Additionally, all the models discuss ways people process and progress through the stages, being careful to honor the journey. Kubler Ross, for example, was clear in her work on the five stages that they are not neat and tidy linear stages but rather, people may progress through a stage and then circle back and revisit it at a later time. Many who have gone through their own grief experience would agree, you move through stages and generally find some degree of acceptance and a new way of living as time passes, but you never truly “get over” the loss of someone dear to you. Grief is messy, unpredictable, and has the ability to sneak in and disrupt your life when you least suspect it.
Grief is messy, unpredictable, and has the ability to sneak in and disrupt your life when you least suspect it.
In my twenty years of school social work practice, I have certainly referenced Kubler-Ross’s work on the stages of grief and found it valuable in many situations. More recently, I have found myself thinking about the stages or tasks of grief and how they can be applied to our work with parents, specifically the parents of children with significant disabilities. I offer the following ideas for your consideration in hopes that if we expand the lens through which we view this vulnerable and yet incredibly resilient population, we might be better able to serve them and their amazing children.
I offer the following ideas for your consideration in hopes that if we expand the lens through which we view this vulnerable and yet incredibly resilient population, we might be better able to serve them and their amazing children.
Parents of children with significant disabilities are not a homogenous group. As with any part of the parent population with whom school mental health practitioners interact, there is tremendous variety in how people experience the disabling condition or conditions of their child. Some parents grew up with a sibling with a disability and feel {at least partially} equipped to cope with the challenges of raising their child. Some parents have a strong familial or peer support network in the community and therefore receive emotional support and concrete forms of respite in their care-taking responsibilities. On the other hand, some parents are coping with a child with significant disabilities compounded by the stress of being a single parent, living in inadequate housing, community violence, or financial instability. Many parents, regardless of community support or economic status find parenting a child with significant disabilities an isolating experience.
When parents of typically developing children commiserate about developmental milestones or developmental challenges, this group quietly nods and smiles but knows those milestones are several years away or perhaps will never be reached. They would love to share those eye-rolling, head-shaking stories of common developmental challenges; “Well, Tim forgot to bring home his STEM assignment again! I’ve just had it with his lack of organization, but you know adolescent boys!” Given their often completely different parenting experiences, the never-ending appointments with doctors and specialists, not to mention the constant day-to-day challenges with feeding, dressing, toileting, sleeping, is it any wonder why rates of divorce, depression, and anxiety are so high among this group of parents?
One of my favorite metaphors for helping school mental health practitioners understand the parenting experience of having a child with disabilities is the excerpt, “Welcome to Holland,” by Emily Perl Kingsley.
“When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport. Only when you land, the stewardess says, ‘WELCOME TO HOLLAND.” You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.” But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay. “BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!”
But stay you do. You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed. The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned. It’s slower-paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts. But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.” The pain of that will never go away. You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.”
When I first read this years ago, I tried to understand it by centering my mind on a parent who may, for example, have a child with a diagnosis such as Down Syndrome. I could relate to the concrete concept of getting off the plane and being in a destination you did not intend and then going through the stages of grief until you arrived at a place of acceptance, resilience, and joy. However, by greatly oversimplifying this grief process, I did not fully appreciate that our parents do not just “visit Holland” once, but over and over again and every time, the grief starts anew. Perhaps not as strong as it was experienced the first time, but nevertheless it is present.
When parents of typically developing children commiserate about developmental milestones or developmental challenges, (parents of kids with significant disabilities) quietly nod and smile but know those milestones are several years away or perhaps will never be reached.
When school mental health practitioners fail to recognize this grief process, the many stages that are contained within it, and its repetitive nature, their attempts at interventions and supports can be met with resistance, apathy, or even anger. An IEP team may carefully assess a student and thoughtfully design a school plan they feel will be effective, only to have that plan met with doubt, questions, agitation, and requests for completely different types of services. Or perhaps the parent asks for or even demands a class addition that is sadly, far far beyond the capability of the child. It is easy to dismiss these requests as naive or write these parents off as “difficult,” or “pushy.” However, as school mental health practitioners, it is our job to attempt, however incompletely and imperfectly, to understand where our clients are and meet them in that place with curiosity and compassion. Then and only then, can we gently help this special population of parents progress a bit further in their journey.
John Norcross, Paul Krebs, and James Prochaska are psychologists who have done incredibly insightful work on the Stages of Change transtheoretical model. The basic idea is that the practitioner needs to identify where a client is in the stages of change in order to offer a helpful therapy posture. For example, if a client is just starting to contemplate a possible change, it would be helpful for the practitioner to listen and be supportive rather than get out a pad and paper and start listing the steps of plowing ahead with the change. Clearly, the client is not ready for that type of assistance yet.
Returning to our parent group, can we identify what stage of grief they are experiencing and then offer a helpful therapeutic posture? In the following examples, I’ll share a variety of parent interactions and then offer some suggestions for how a practitioner might choose to respond. All of the statements below were shared by parents of 11-14 year-olds with significant cognitive and physical disabilities, but as you will notice, the parents were grappling with different tasks and stages of grief.
A. “We knew the phone would eventually stop ringing and the birthday invitations would stop arriving but it still hurts.” — Stage of grief? Depression with some Acceptance.
Possible practitioner responses:
- An active and gentle listening ear; emotional support.
- Reassurance that although the child may not be quite as involved with the general education population as they were in younger grades, general education peers are still important and caring “allis”.
- The practitioner could make sure the school has a peer support group that provides outreach and social opportunities for students of different abilities to mix and get to know each other.
- The practitioner can send pictures (with permission) of the child eating lunch and running in PE with “allis.”
- Seek opportunities for the child to be involved with general education peers and activities such as clubs and non-competitive sports.
- The practitioner can gently engage the parent in a conversation about alternative recreation programs (ie: special rec) where the child might be able to form true friendships and social connections with other children with special needs emphasizing the benefits of having both “allis” and true friends.
B. “I’ve seen test scores from her last re-evaluation. I can’t see them again. They cause me to go to a very dark place and it’s hard to come back.” — Stage of grief? Depression with some Acceptance and a healthy awareness of boundaries.
Possible practitioner responses:
- Consider whether or not you absolutely need additional assessments and test scores. If so, make sure the parent knows the benefit to their child or to their family of obtaining these scores. For example, will further assessment help to secure state funding in the future?
- Meet with the parent privately before the actual IEP meeting so they may view the scores and grieve in a more respectful setting. Then, in the actual IEP meeting with many participants, the scores can be generally referenced but not explicitly stated, the parent can nod acknowledgment, and the meeting can proceed.
C. “I do NOT want her in this special class! She just learns things a little slower than other kids. Being around all these weirdo kids will definitely not help!” — Stage of grief? Denial and Anger.
Possible practitioner responses:
- Lots of empathetic listening.
- Frequent points of contact with the parent to establish trust and rapport. Calls or emails to share the good news, positive accomplishments, thoughts about a new club or activity the child might enjoy.
- Frequent contact about what is going on in the classroom academically (DATA) so that the parent can see the academic gains being made and why the placement is beneficial to their child.
- A daily journal the child participates in so the parent can hear directly from the child about the highs and lows of the day. Whenever anger is involved, there is a lack of trust, and this is usually improved when the parent is receiving information not only from the teacher/school but from their own child.
- Acknowledgment of the child’s strengths and talents; clearly the parent does not see their child as belonging in this class at all, and so the task might be to help them see the child does belong academically but the school acknowledges the child’s strengths socially or behaviorally and makes sure to provide differentiated opportunities in those areas. Essentially, the school does not view the child as broadly disabled but recognizes her individuality and strengths.
Other general interventions that may prove beneficial in helping parents cope with grief and be more collaborative and on-board with the school team:
- Give parents props. They know more than you do about their child – especially when that child has a rare or complex disability. They have walked this tough path for a long time. Honor that journey and make sure they know you honor them!
- At the elementary level, be kind and gentle, but also honest. So many times, we don’t want to have those tough conversations about the severity of a disability with parents. Perhaps we label the child as having a “specific learning disability” instead of considering whether “intellectual disability” would be more appropriate. Maybe we keep adding social work goals and revising the Behavior Intervention Plan rather than consider whether the eligibility needs to be changed to “emotional disability.” Although all of these decisions are made with the utmost kindness, they can impede and stunt a parent’s grieving process allowing them to linger in denial rather than move toward acceptance. These decisions also place middle school and high school teams in an awful position fraught with anger and resistance when they have to level with parents about accurate diagnoses and eligibility.
- Make time in your conversations with parents for both grief expression and celebration of new accomplishments and improvements.
- Explore the family’s support network and promote any efforts to expand and strengthen it.
- Help teachers understand the grief cycle and how it may appear behaviorally in a meeting so they are less likely to take the parent’s behavior personally and more likely to empathize and have a compassionate response.
- Finally, find ways to collect and share information with parents that celebrates STRENGTHS and progress made in various aspects of the child’s day. Can you find or create a rubric to show how much progress she has made over the year on the skill of; ordering a school lunch independently? Can you send the parents a picture of their child happily working with general education peers in Art class? Can the child create videos or portfolios of classwork they are proud of and show the parent at the IEP meeting?
School mental health practitioners play a vital role in the lives of children with significant disabilities. They provide social, emotional, and behavioral support and programming to ensure a child feels valued, loved, accepted, and connected within the larger school environment. Just as importantly, practitioners can play a valuable role in supporting the parents of these children. Their careful and compassionate work can help promote trusting bonds and positive effective collaboration between home and school. Understanding the grief cycle, how it may reappear at different times during a child’s school experience, and how to compassionately respond to grief-related behaviors can greatly enhance the practitioners’ effectiveness in schools.
