Hope or Denial

I had the opportunity to attend the Opening the Doors to Inclusion 2013 Early Childhood Inclusion Institute last week in Chapel Hill.  It gave me the opportunity to network with educators from all over the world.  Two speakers especially left an impact and I wanted to share them with you. 

The keynote speaker featured Micah Fialka-Feldman in Through the Same Doors: Living a Fully Inclusive Life. Micah shared his first-hand story of inclusion.  Micah is 24 years old and one of the new wave of adults with cognitive disabilities attending college.  Since first grade, when he told his parents he wanted to go in the same door as all of his friends, he has been fully included in his school, community and now on a college campus.  He serves on the Project Advisory Committee for the Center for Postsecondary Education for Students with Intellectual Disabilities. You can also watch his award winning documentary, Through the Same Door: Inclusion Includes College on youtube (http://www.youtube.com/watch?v=fWnCVd2cBpA).  Currently Micah is engaged in fulfilling his dream to live in the university dorm.  Micah’s favorite quote is by Dan Wilkens, “A community that excludes even one of its members is no community at all.”  Micah is committed to building community for himself and for others.

Following the keynote, Janice Fialka, Micah's mother conducted a separate plenary session which I attended.  She talked about theThe Dance of Partnership: Why Do My Feet Hurt? Strengthening the parent-professional partnership.  During her presentation she discussed rethinking the word denial that professionals often use.  She discussed how

parents are often judged solely from the professional’s perspective, the professional may not genuinely listen to or engage parents in a conversation about their dreams and hopes for their child. If professionals categorize parents as “in denial,” unaccepting, or difficult, professionals may lose the chance to understand and learn from the parents.

She discussed how parents and professionals often enter into a working relationship with different expectations and perspectives. Such differences affect how each partner perceives the next step in intervention. For many professionals, a label, diagnosis, and/or prognosis can give direction and insight to their work with a child. They can consider which intervention techniques work best with children with that particular diagnosis. They know what they expect to happen with the child. During the initial diagnosis and during transition periods, parents may not appreciate the importance of a diagnosis or label. To parents, labels may be like foreign words creating chaos and a sense of inadequacy. Parents may question the meaning of the diagnosis, unsure about how it might affect the future of their child and family. They may feel unprepared for this new twist in life, and wonder how to assimilate so much information at once. 

Many parents and professionals have heard or used phrases such as, “that parent is in denial,” or “that father can’t face the reality of his child’s limitations,” or “that mother refuses to admit that her child won’ t be able to...." Sometimes when professionals use the phrase “in denial,” the implied message is that the parents are not being realistic in their expectations of what their child can or will be able to do. Professionals should be careful not to judge a family when the family does not want to do things the way the professionals think is best.

Professionals can reframe “in denial” as the parents’ way of being “in hope.”
They can help parents explore their dreams, hopes, and fears for their child. Professionals 
can encourage the parents’ dedication to, determination, and high expectations for their child.
http://www.danceofpartnership.com/index.htm

Suggestions for professionals:

•  Support parents’ hopes and dreams for their child.

•  Suspend judgment of families and their behavior.

•   Be patient. People need time to find their own personal way through unexpected events.

•   View this time as an opportunity to strengthen trust.

•   Educate other professionals and family members to rethink denial

Unfortunately, I have been a professional that fell into the "in denial" trap.  I will forever more consider parents "in hope".  

In Hope, Norma Honeycutt, Executive Director