Thursday, December 19, 2019
Dealing with the naysayers in your child's life
This guest post is by Jane Kim. A writer and mom of a seven-year-old with autism, she works in the field of immigration and lives with family in the Philadelphia suburbs. Find Jane on Twitter @JKimRites.
My friend Anne recently told me about something that happened after she gave birth to her daughter with Down syndrome. She was emotionally raw and struggling to process the impact it would have on her baby's future. Her doctor rattled off a list of “nots”: her daughter would not be able to talk, read or ride a bike. He then assured her there were jobs for “these types of kids, and with hard work and a whole lot of luck they can go on to greet at Walmart.” She felt a mix of disgust at his ignorance and determination that she would do whatever it took to prove him wrong.
I’ve heard countless stories from parents who were told all kinds of “nots” from those they trusted, during their most vulnerable times. Your child “will not/cannot/most likely won’t be able to______.” My son is on the autism spectrum and seven years ago, his developmental pediatrician told me it was likely he would never speak. I remember sobbing during that appointment, shocked by the careless manner in which she offered that statement, the bright future I had envisioned for him quickly fading away.
Today, my son is a charming, quirky and funny first grader. Thirteen years later, Anne’s daughter is on the school cross country team and shares her sass, opinions and love with anyone willing to receive it. Both her mom and I are grateful that we’re no longer in that “not-filled” period of our lives. Challenges still remain, but the future is just as it should be: not yet written and filled with hope, a place where dreams can be achieved.
Looking back, it took me a great deal of courage and a conscious commitment to think differently amidst the naysayers. Those of us who care for children with disabilities shouldn’t be subject to this crystal-ball negativity. Many kids defy these outcomes, but the emotional scars remain for their parents and caregivers. On the tougher days, I recall the “nots” and begin to question my choices, if my efforts matter and if they make a difference in my son’s life. Doctors, therapists, grandparents, teachers and school administrators need to help frame a parent’s perception of their child’s future by empowering them—and the messages they speak matter.
A couple of months ago, the institution where I work provided real inspiration for my son’s future. October was National Disability Employment Awareness Month and through employee spotlights on the company intranet, they raised awareness and further educated employees about disability. Staffers with disabilities in various positions—Physician Practice Manager, Family Relations Coordinator and Occupational Therapist—shared their unique stories discussing their strengths, challenges and words of wisdom.
The candor and celebration of their experiences were important on many levels. It told me that in a supportive environment, people are less inclined to hide or minimize their disability/disabilities. It told me that at the right workplace, there can be regular and open communication about appropriate accommodations to ensure that employees are successful in their respective positions. It told me it’s possible for my son to find and maintain fulfilling employment when it’s time for him to enter the workforce.
Being part of an organization that champions all abilities has lifted my outlook and provided me with much-needed reassurance on the tough days. Although not all of us work at a place that champions people of all abilities, it’s still possible to find ways to get the “nots” out of your head. A few things that have worked for me: for starters, there’s no need to give the naysayers an audience. Seek out those who are willing to get to know your child as an individual, and not a diagnosis. I’ve found that recommendations from others are incredibly beneficial. Ensure that those on your team know your child’s strengths, not only the challenges. Understand that your team can only perform at its best if you are an equal partner. Find others with similar experiences who can relate and offer support, real-life tips and advice. If you happen to be looking for a new job for your adult child or yourself, check out the top-scoring companies ranked on the Disability Equality Index.
There is a deck of cards by Culture Coach International that I got at work last year; one includes tips for fostering inclusion. I carry this card in my wallet. It has helped me better understand what it means to be inclusive, and has enabled me to communicate and advocate for my son more effectively. In the meantime, I’ll continue to challenge and eliminate those careless and harmful “nots.”