As a parent of a child with a special needs label, I struggle to balance using the label to get needed services with refusing to see my child as defective as the label implies. Many parents continually struggle to do this, but most succumb to the relentless message that their child has deficits which need to be fixed, ameliorated or managed. Each time we, as parents, refer to our children by their diagnostic labels, we are saying they are less than whole, we are taking something away from their humanity. We are saying that the label we give this child is more important than anything else. And when we do this, we are giving permission to others to do the same.
The change in helping others to see the whole child instead of a mass of deficits to be fixed must start with parents. I started referring to my son, Tyler, as the right-brained kid in a left-brained world rather than my dyslexic child. To me this feels like a more accurate less stigmatizing description and implies he has struggles and strengths, as do all of us. I also at times refer to Tyler as my kind, compassionate, artistic son who has difficulty reading and processing information. Most of the labels we give children are negative and infer that the children are defective in some way. Our children are much more than the labels we give them. Even the positive labels such as twice gifted or indigo, imply that some children are more special than others, which burdens them with expectations that they can not always fulfill.
Labels put children into boxes. A box lists all the ingredients of what is supposed to be inside. It can become a self-fulfilling prophecy. Any child who tries to act differently from the listed expectations of behavior on his or her box is immediately disciplined or chastised and forced back into the box. Given my son Tyler’s language difficulties, people are always surprised and confused when I say that he writes wonderful poetry and descriptive stories. He can paint a picture with his words because he thinks in pictures first. This often does not fit into an adult’s perception of a child with a learning disability. In other words, he does not always fit into the LD box with its lists of ingredients/expectations of behavior.
Imagine what this does to children to put them into these many boxes with their many labels and lists of expected behavior. There can be immense frustration in trying to break out of these boxes when it seems as if all the adults want to do is to fix, modify or ameliorate their behavior in order to keep them within the box. It can lead to anger and what is often referred to as acting-out or self-destructive behavior. Depression and sometimes even suicide can follow after years of such treatment. Seeing past the label to the whole child, using language that focuses on the positive instead of the negative, and avoiding generalizations and assumptions that come from the use of labels can be immensely freeing and healing for all concerned - child, parent, teacher and therapist.
This is the philosophy which galvanized the creation of a new non-profit organization called The Creative Soul of Children, Inc. (CSC). Its goals are to revise the treatment, education and ministerial support of children who have special needs labels; revision of parenting styles is often a necessary adjunct. These will be accomplished by starting a national and community dialogue among parents, professionals, and young people affected by traditional disability labels and by inspiring and assisting people to create change within local communities. One activity which has already been started by the CSC is the CSC Speaker Series. The second CSC Speaker Series will take place this spring. Please see information in this newsletter on the Speaker Series.
Another activity that CSC will promote is the development of an online parent/teacher/therapist support network through a CSC web site for the purpose of starting a national campaign to shift awareness from focus on children’s deficits to focus on children’s assets. Yearly national conferences will also be developed to look at children with special needs labels from an emotional/spiritual perspective in order to stop seeing them as defective (needing to be fixed or modified) and start seeing their differences as opportunities for meaningful compassionate connection. Topics to be explored will be investigating the creative soul of education, parenting and caregiving as a journey of understanding, welcoming children with special needs labels into our faith communities, and exploring alternative and holistic healing approaches involving the connection between science, medicine and spirituality.
If this message inspires you, we are looking for volunteers and fundraisers for this new organization. Please contact Sally at sally@embracechildspirit.org for more information. Until CSC has its own web site, information can be found at www.embracechildspirit.org. (CSC, Inc was incorporated in July, 2007 and has filed with the IRS for 501 (C) (3) tax exemption which once achieved is retroactive to the date of incorporation.)