The following is an excerpt from an article Janice Fialka wrote for Early On Michigan, Fall, 1994. She is a married and the proud mother of two children, Micah, 11 and Emma, 7. Micah is a charming sixth grader who happens to have the label of developmentally disabled. Janice is also a social worker and trainer. She is available for national conferences and notes that her keynote address entitled: "The dance of partnership: Why do my feet hurt?" has been well received by both professionals and parents of children with special needs. The talk provides insight into the unique challenges faced by parents and professionals as they join into partnerships on behalf of the children.
I believe that as professionals you can make a difference in our lives as parents of children with special needs. You cannot, however, make THE difference. Therein lies the challenge of our partnership.
I want to highlight ten ways in which you can make an important difference.
One: You have the opportunity not to be intimated when blow off steam. You should not personalize these angry negative feelings. The great challenge for you is to give us the opportunity to feel our feelings in the company of experienced and caring professionals.
Two: You have the opportunity to decrease our profound sense of loneliness. When my father was diagnosed with cancer several years ago, I was constantly approached by co-workers, friends, and neighbors, some of whom I hardly knew. With concern and kindness, they inquired about his health, his treatment and prognosis and our family's adjustment. At the same time that I was dealing with my father's cancer, I was also dealing with my two-year-old who obviously had special neurological needs. I was baffled by the LACK of attention paid to the issue of my son. Very few people asked about my son's health, his treatment, his prognosis and our adjustment. Society as a whole remains awkwardly silent about disabilities, especially mental disabilities. Few people know what to say.
You have the opportunity to break that silence and gently lead us into the sounds of compassion and respectful curiosity. So often we want to talk about "it" but few people appear to want us to talk. You often will be the ONE person who will say: Tell me more. And then what happened? And how did that feel?
Three: You have the opportunity to anticipate and normalize our feelings. You can prepare us for the challenges of birthdays and holidays. You can let us know that we will have wild mood swings and uncomfortable thoughts about "those parents" with their normal children.
Never underestimate the significance of your anticipation and acceptance of our feelings. It will comfort us during those long sleepless nights.
Four: You have the opportunity to help us re-enter the " world of normal families". Parents with special needs children never feel the same once they learn about their children's differences are cognitive. We don't know how to squeeze back into the world despite the fact that we are in it. Going to birthday party can be a major mountain to climb. You, as a professional, can create bridges back to the world.
Some professionals invite parents to bring a family member or friend to a therapy session. It is often easier for the professional to introduce the information and to model how to talk about these sensitive issues.
Five: You have the opportunity to help us know our child. In the beginning, most to of us know very little abut the special needs. We often can't even spell this new reality of our lives. You can model for us how to say the words, how to tell others. You can take us into our children's lives.
I had lunch with a friend whose child is multiply impaired including visual impairment. She had been feeling very frustrated in part, because she did not understand her son's world. The therapist suggested that she apply Vaseline to her eye glasses and interact in the world for an hour. It worked! My friend was thrilled to see the world though her son's eyes. This therapist had simply shared her knowledge. To my friend, Lynn, she had given her way to once again fall in love with her son.
Six: You have the opportunity to share books, pamphlets, and resources. Take the articles out of your file cabinets and off the shelves and spread them to the parents who have no idea where to find the stories and facts about our children. It is very challenging to walk to the "disability" section of a bookstore or library. You can bring it to us and even sit next to us as we tentatively open those pages.
Seven: You have the opportunity to recognize and celebrate our visitors. They are often small for the "normal" population to appreciate. You know that awful sounding "grunt" made by our child is truly a miracle. Often it is only you that knows that a new movement is significant and indicates a renewed sense of hope. You can point out these grand milestones to us.
Eight: You have the opportunity to remind us how far we have come and how much we have accomplished. You, often more that our closest friends, know the details of our successes. Over an over, you can highlight those changes and celebrate the growth.
Nine:You have the opportunity to allow us to those movements when our souls fall into deep despair. We will, at times, feel that we cannot and don't want to continue for another moment.
You can give us the space to be in that dark place. It is one of the greatest "intervention" you can give us.
Ten: If a at times you can do some of these nine suggested activities, then you will have the opportunity to help us feel hope. We must feel hope if we are to get our next appointment, or to face the next bithdaty party or to use the words "special needs".
Partnership is a collaboration. Plopped right in the middle of the world you will find the word "labor". Partnership is labor. It is hard work. You are our midwives helping us give birth to a new relationship. Let us begin.Reprinted with permission from the author, Janice Fialka. This article was published in the DEC Communicator, Vol. 23, Issue 1, Nov. 1996.