What Parents of Special Needs Children Require from Professionals
The needs of parents from doctors and other professionals are described in this interview with parent advocate and Speech Pathologist Lori Hickman, author Living In My Skin.
Interview By Allison Martin
I attended an Angelman Syndrome Conference in Seattle several years ago. I had a little angel on my case load and was eager to find out all I could about treatment approaches, particularly in the area of communication. I anticipated that I would learn many good, clinical things. What I learned was beyond my expectations, and not simply in terms of clinical information. Many parents attended this conference with their angels of all ages. I was overwhelmed by the amazing wealth of knowledge and understanding of this disorder that I gained by visiting with these angel families. Before I left, I was invited to join the Angelman Syndrome email discussion group that is comprised of those who live with and love angels.
I wanted to find a way to tap into this resource that parents provided. I knew from past experience that communication between families of children with special needs and those in their support network (professionals, extended family, friends, the community) was not always positive. I believed that support that parents of children with special needs offered to one another could allow those of us in their support network to meet their needs in more meaningful and successful ways. Over the next two years, I collected responses from hundreds of parents and care givers of children with special needs. I found them to be the true experts.
The parents that participated in this project repeatedly shared experiences that revealed that not only professionals, but family members, friends, communities and churches just "don't get it" and "haven't a clue" about the special needs that parents end up having as a result of parenting a child with special needs. As a result, these groups (the very groups that should be the primary supporters for families who have children with special needs) are unable to connect with families of children with special needs in supportive ways. Many times families become isolated and discouraged as a result.
In one of my interviews, Cherrie Ward, the parent of a 13 year old boy with attention deficit disorder, conduct disorder, and oppositional defiant disorder related to me "even my family and boyfriend do not fully comprehend my needs. They don't live in this skin ." She was expressing the loneliness and isolation that comes from experiencing a life-changing and intense parenting experience, one that no one in her support environment could understand. Many parents throughout this project expressed similar feelings.
I came to see that so little of what we can clinically offer to families has real relevance to their needs. I believe that this is because we do not understand the reality of parenting a child with special needs and the impact this has on the family. I also believe that our "professional demeanor" can result in miscommunication when we meet with families. Parents can only approach this exchange from a very personal, emotional perspective, yet we enter this exchange from a clinical perspective, no matter how empathetic we are. Unless we learn to "listen with our hearts" to these families, we will never truly hear what they are wanting and needing from us, as professionals. Many of the parents who participated in the project expressed a desire to read the responses of other parents.
I think one of the most difficult aspects can be the isolation and discouragement I described above. Parents do not often receive the level of support they need, and are not usually able to connect with others who are "going through the same thing". They spend much of their time learning about their child's special needs, advocating for their child, and grappling with issues about the future that those of us who do not have children with special needs do not have to face. But every family is different, so the challenges they find the hardest to deal with will also be different from any other family's.