How many of us have painted pictures of what our children's lives would look like? Granted, some of us may have to use "paint-by-number" kits, but we create scenes based on life's positives. You fill imaginary albums with images of these events. Your child's birth, first words, first steps, and first day of school are etched in your mind. For many, these sweet dreamscapes become reality. Yet for others, the dreams fade and the reality of having a child with a disability jumbles those images.
I sat in a room, looked a mother in the eye, and told her that her daughter had mental retardation*.
Karen was in second grade and was up for reevaluation. The new evaluation testing scores coupled with Karen's advancing age meant a change in diagnosis from developmental delay to mental retardation. I was supposed to send the report home for her parents to review before a formal meeting, but there was no way I could let them read the report at home without the support (or even a friendly face) that a team of school personnel could provide.
I had worked with Karen and her parents for three years. We had laughed and cried together over Karen's gains and losses. I knew the report was accurate and suspected that the mom knew something wasn't "right" with her daughter's development. I also knew that her dad believed that she'd "grow out of 'it'" or that we'd find a method of teaching that would make Karen learn like her peers.
Many childhood differences are not evident at birth, and thus the special education teachers and their support personnel are tasked with helping the parents grieve for their lost expectations. You might be thinking, "Wait, nobody died, what grief?" And you're right, the child did not die, but the parents are faced with a sense of overwhelming loss.
The stages of grief can apply to anything, and these parents have lost many of the pretty pictures that they painted of their child's development. Subsequently, they experience the stages of grief: denial, anger, bargaining, depression, and acceptance. The parents face these not only at diagnosis, but sometimes daily as they learn to live with lost dreams. Therefore, I advocate grief counseling as an integral part of special education for parents and children. It helps to guide the parents through the process as they mourn their child's deficits in social, emotional, cognitive, and physical skills.
I sat in a room and cried with a mom.
I did this time after time and helped parents of children with disabilities learn to mourn lost expectations, but also to celebrate the future. Was it fair? NO! Why did I have a son without a disability, yet they did? I was determined to make sure that everyone involved with the child would have the tools and understanding to level the playing field. Was it fair that Karen had mental retardation? NO! Under my watch, I helped her parents grieve, gave them a shoulder to cry on, and let them know that they were not alone. I provided them with the information they needed to get her the services and support Karen needed. I helped them solve problems at home and at school. I gave them my home phone number with the instruction to call anytime. They knew that I would be Karen's advocate. This meant that I could tell them the things they did not want to hear, but together we would build a relationship with Karen as the core.
I truly believe that in order to experience the joy of your child, you have to grieve the loss of the preconceived pictures/dreams and take time to redecorate. My goal as a special education teacher was to help parents embrace the chance to paint new pictures, dream new dreams, and fill them with love, laughter, and learning.
*The term mental retardation is outdated but this event occurred before the terminology change to intellectual disability.