A concerned SDAEYC member wrote a thoughtful response to my article that included the essay Welcome to Holland. It was pointed out that there are some families who will not find this essay comforting or the analogy appropriate. I welcome the views and ideas of the membership and I want to be sure the special needs committee is being inclusive of different ideas and opinions of the families we serve.

There are other essays written in response to Welcome to Holland. One is titled Welcome to Beirut: A Beginner’s Guide to Autism, written by Susan F. Rzucidlo. She compares receiving the diagnosis of autism for her child to being kidnapped, having a black bag thrown over her head, being kicked in the stomach, having people try to rip her heart out, then being dropped in Beirut, in the middle of a war. She also compares the early intervention system to being a rat in a maze, a "Special Ed maze." Some parents have cheered the Welcome to Beirut essay because it allows them to express that they love their child, but hate the disability. Another parent, a mother of twins with the diagnosis of Cerebral Palsy, says she didn’t end up in Holland; it was more like the wilderness. She says they have to rough it, find their own food and shelter. There are rivers to cross and mountains to climb and you never know when another life-threatening storm may blow in.

One concept I found each of these essays has in common is that they end with hope. They describe lulls in the war when good times are had and how the wilderness can be more beautiful than Italy or Holland. Going through the difficult times gives them greater appreciation of the better times they experience.

The goal of the Special Needs Committee is to provide information and resources on working with and supporting children with disabilities and other special needs in early childhood settings. Parents have stated how the acronyms and slang have become a part of daily life. For many professionals in early care and education this language of special education is also new or confusing. They too may feel like "rats caught in the Special Ed maze." The special needs committee is here to support teachers; to help guide people through the maze, act as allies to parents and families who feel they are in a war zone and reach out to those who feel alone in the wilderness.

Each of the essays has the same message: families with children with special needs have a very different experience. Each family is unique and no one analogy will apply to all families. I have given this some thought and feel that the idea of having a child is not a destination, but a journey. I hope that those traveling through difficult or dangerous terrain will move through it with our help.

Through my research for this article I found that the need for effective communication and collaboration between teachers and parents has been a concern for many years. In 1990 Montana University published an 83 page compilation of essays and resources titled Common Ground: A Series of Essays for Professionals and Families who Unite to Help Young Children with Special Needs. The focus is on acceptance of children with disabilities and cooperation between parents and early intervention specialists. More recently an article was published in the journal Infants and Young Children, Building New Dreams: Supporting Parents’ Adaptation to Their Child with Special Needs. Several themes emerged that are important for positive relationships with families:

• Parents are the experts on their own child; work with them.

• Parents and families go through a grieving process, respect this.

• Treat the family as a unit, not just the child.

• Be an enabling and empowering force in the lives of the family.

• Parents know you can’t eliminate the negative, but please accentuate the positive.

• Research literature indicates the majority of parents raising children with chronic health problems or developmental disabilities cope well with the increased stress and demands and many report a high satisfaction and enjoyment of their role.

 

Please join the special needs committee in May for a screening and discussion of the documentary film Including Samuel.