The following quote from a book entitled Education Children with Autism by the Committee on Educational Interventions for Children with Autism, National Research Council inspired me to create a page about the inner pain so many parents of disabled children confront.
"Professionals serving children with Autism and their families in the United States must also be sensitive to the cultural context of service delivery. That cultural sensitivity means...understanding that a child's autism means different things in different cultures. For example, for some ethnic, racial, or socioeconomic groups, having a child with a disability may carry implications of shame about one's failure as a parent and blame for parents and the extended family.... Some cultures may encourage an expectation of a magical cure for a developmental disorder.... If teachers and other professionals fail to understand what a child's autism means to a family, it will be difficult to establish the kind of collaborative relationship between school and home that is so essential to the education of young children with autism."
There are so many truths in this quote for both parents of children with developmental disorders and parents with children that have other types of disabilities causing social difference, special education and treatment over long periods of time. Many parents we serve cope with shame, blame, feelings of failure and of social stigma. Parents of children with autism do have the most significant challenges as compared with parents of children without developmental disabilities. However, parents experience these inner thoughts and feelings individually, not comparatively. In other words, the parents of children without developmental disabilities, when confronted with shame, blame and feelings of failure and social stigma, do not feel less than those with developmental disabilities. People just feel and think and experience their own inner and outer challenges.
As the parent of a young child with behavioral problems, those that caused the eventual development of Access Center for Education, I remember confronting shame, self-blame, and feeling stigmatized by having a child with problems. I remember years of coping with the implications of having a child with behavioral problems. I wondered what was wrong with me, thinking this was a sign I surely shouldn't bring any more children into the world, wondering what I did wrong that made me have to cope with these problems, and avoiding innumerable social situations to avoid the possibility of standing out because of my child's behavior. My child's difference wasn't his difference, it was our difference. Because I was the only care giver, my son was with me almost everywhere and almost all the time. Therefore, my life and behavior had to wrap around meeting the needs arising from his issues and problems. So, his differences became our differences.
Aside from my experience, many of the parents I have served confront some level of shame, blame, feelings of failure and of social stigma. Sometimes the intake meeting at Access Center for Education is the first time a parent has really had a chance to talk about what is wrong with their child's education. In this process, more than a few parents have begun to cry or become emotional because talking about those problems brings these inner thoughts and feelings to the surface, things these parents have coped with for years but haven't spoken about. Speaking about the educational problems allows me to give them the chance to speak about the inner stuff that comes with having a child with special needs. What I've found is that parents with autistic children and those without are coping with these inner issues related to raising a child with disabilities and a child's differences become very deeply connected to a mother's self-assessment and feelings about her and her family's position in the world.
Since we deal with educational problems at Access Center, I feel it is important to provide acknowledgement of these inner issues related to parenting children with disabilities. It is also important because I never see the sensitivity to the challenges parents face by administrators, most district specialists, many general education teachers, and even a few special education resource specialists. I believe that the lack of sensitivity to these inner issues and the "at home" challenges parents face when raising a special needs child adds to the anger that has built up by the time parents seek the help of an advocate. Furthermore, these inner issues seem to add to the pain of parenting a child with disabilities.
Our position, at Access Center for Education, is that parenting a child with disabilities is normal. We deal with a 100 percent population of parents with children that have disabilities. Therefore, the norm is children with disabilities. The abnormal group is parents with children without disabilities. It is our goal during development, to provide a place where parenting children with disabilities is normal and parents themselves can feel "okay" and "at peace" with their challenges by becoming a part of our advocacy team at whatever level is comfortable for each parent and family. Most importantly, with educational issues requiring advocacy, we have someone else to blame rather than parents. We have a unique opportunity to really point to problems a parent and child haven't created and if there are people that should feel shame, those people are not parents or their children.