Several years ago, my friend’s son with Down's syndrome was approaching his sixth birthday — the first one celebrated in school. Andrew excitedly announced that that “soon, soon, I am bringing a big, big birthday cake with red balloons on it to school for all my friends.”
The teacher was preparing for the big day. She was also mindful that my friend was anticipating this day with delight, but perhaps with some sadness, too.
The teacher found a quiet, private moment and offered these words to my friend: “I know how wonderful birthdays can be for families. I have also learned that some parents re-experience some less comfortable feelings, such as grief or sadness. Birthdays and other milestones sometimes call up uninvited feelings. I just wanted you to know that this might happen and that I would be here if you wanted to talk about them.”
Stunned, my friend fought back tears. She wondered how this teacher knew what had been keeping her up at nights. How did she know?
The teacher helped her know that she was not a “terrible mother” for having those feelings of worry, loss, and sadness — these are normal feelings that can occur when parents have children of special needs.
Andrew’s mom left the teacher’s classroom feeling less alone and a bit more normal than when she had entered the school on that day. She was not cured of sadness, but she felt lighter, less troubled, more able to move forward. She felt more at peace knowing that excitement and sadness can exist simultaneously, especially when parents are called to build new dreams for their children.
This interaction took less than five minutes, but its positive impact continues for my friend, even today, 10 years later. Seemingly simple and sensitive interventions by professionals don't go unnoticed by families who often struggle to make awkward and conflicting feelings fit together.
Emotional Transitions
Birthdays, transitions, and other milestones are packed full of awkward feelings, especially when a family has a child with special needs. Early childhood educators and professionals typically have an awareness of and sensitivity to these strong, shifting feelings in parents.
These professionals often are trained to understand the grief and coping process during the initial diagnosis and early phase, when parents are raw to the unexpected news about their child. As a result, early childhood professionals typically address the emotions in skillful ways with families, giving parents opportunities to talk about their thoughts, worries and concerns. This focused listening supports parents in their efforts to cope, adapt and find their strengths as they rebuild their dreams.
As the child moves on into middle and high school, however, professionals seem to be less aware of these normal, yet troubling, emotions which parents may experience again during periods of transitions throughout a lifetime. It’s not that these professionals are less sensitive, but perhaps less aware and more focused on other educational issues and demands.
Finishing High School
I'm gaining a whole new perspective about transition as my 17-year-old son, who has developmental disabilities, approaches his senior and final year in high school (gulp!) This big transition seems to give rise to almost every feeling in the universe, sometimes all at the same time. I find myself shoved back into that rocketing roller coaster of feelings back when he was a toddler and we were just beginning our ride into the world of disabilities.
Ordinary moments now will re-awaken strong feelings: a flyer announcing college night, moms chatting about the rewards of having teenage sons who drive cars and run errands and seeing a group of young guys hanging out at the basketball court. Unexpected events like these can cause me to sink into sadness, reel into rage and whirl into worry.
I want those ordinary things for my son, too. I don’t stay stuck in those tender moments forever, but they do hit me and my family, often with no warning.
My son has a rich life. He's on the high school track team. He is the proud board mMember of a national group called Kids as Self Advocates (KASA) and recently traveled to St. Louis for his first board meeting. He does volunteer work, is a member of People First and loves being a teenager.
But my husband and I have had to work long and hard to ensure he has good experiences and relationships. We’ve had to counteract attitudes that unintentionally limit what people see as possible for him. We have had to work hard to ensure that folks focus on his abilities and not his disabilities. With the help of many caring people we are dreaming and living new dreams. Most importantly, our son is finding his own dreams.
Still, there are those moments when we fight back the tears and fears.
Advice For The Pros
When school, vocational and health professionals are empathic and aware that grief is an expected emotion for most parents at any phase of our children’s lives, we feel better.
For professionals, don’t forget to take time to sit with parents, to ask how they are doing, to inquire about what might be on their minds and invite them to share a bit about what they are missing or wishing for. Let them know that it is not uncommon for parents to feel moments of grief, sadness, loss, fear, anger, guilt, worry, exhaustion and even despair.
Remind parents that grieving is a normal part of the parenting experience. Comfort and strength come from being in the company of caring people who are not afraid of feelings. Feelings are at the core of our humanity. To bury them is to bury our potential to connect with others.
Focus On Dreams
Marsha Forest, an educator and leader in the inclusion movement, observed that “Martin Luther King said ‘I have a dream.’ He did not say, ‘I have goals and objectives.’”
Indeed, dreams are what propel us forward, drive us to work harder. Of course we need clear goals, but ultimately it is our dreams that breathe life into our actions. Parents appreciate it when they have the opportunity to work through their original dreams and move into the new ones.
Rebuilding dreams is a life-long journey, extending into every new phase and new milestone of our child’s life. If professionals move too quickly into the action plans, they loose the opportunity to support parents through the phases of normal grieving, worrying, and wondering.
In Susan Zimmerman’s book, "Grief Dances," she poignantly tells the story of her daughter, Kat, who had Rett Syndrome, and the lessons learned by each member of the family in dealing with Kat. In one passage, her younger daughter, Helen says to her, “Don’t you get it, Mom? Kat keeps us from just living on the surface.”
Professionals have that chance, too. When you pause, sit, reflect, inquire and invite parents to share their darker feelings and worries, when you validate those experiences and value this part of your job asmuchas the well-defined action plan, then the work you do is not surface work.
It is the stuff that dreams, especially new dreams, are made of.
This article first appeared in Newsline, June, 2002.
Janice Fialka is available to conduct workshops for schools on strengthening the parent-professional partnership. Her books, "It Matters: Lessons From My Son" and "Do You Hear What I Hear? Parents and Professionals Working for Children With Special Needs," are available by contacting Janice at 248-546-4870 or at www.danceofpartnership.com.