Updated: Jun 29
Parenting is tough on a good day... It is exponentially more challenging when your child is carrying around a diagnosis or a label. As a Ph.D of Educational Psychology, researcher, special education teacher and humble mother of four who has walked in your shoes through every frazzled day, I get that each one of us have signed up for (apologies to the US Army) "the toughest job we'll ever love".
Back when I worked with students on the autism spectrum, I sat across the desk from many a confused and beleaguered mom or dad, so yeah, I knew it was tough. But it was not until my own child was diagnosed with a rare genetic syndrome that I was forced to come to terms with the stakes both for me and my son.
Let's face it no parent of a child with a label forgets "diagnosis day". You know, that day when the bottom falls out of your world. Just like you remember where you were when the Twin Towers fell, you remember the day when some pediatrician, psychologist, geneticist,or diagnostician told you that based on some measure your child just didn't "measure up".
But in our case, even before "diagnosis day" we knew that all was not well. When Jack could not muster the strength to breast feed, lift his head, hold himself up on his elbows when laying on his tummy, form words so that they could be understood, we knew. When his twin sister blew by developmental milestones that confounded him, we knew. In our busy family it would have been easier to leave him behind, "where he was safer, more comfortable, better off". But for me this was unacceptable, I vowed that Jack would do everything that his twin sister did! My son would not be left behind. The next 20 years tells the rest of this high expectations parenting story.
I will continually challenge you to focus not on what "is" but what "is possible" for your child, regardless of his or her current functioning level.
-Dr. Deborah Winking, Capable
Each child is unique and our goals may differ wildly based on the individual. However, we all have dreams, goals and imaginings for our child, those persistent little inklings of what "could be". For some it may be independently engaging in self-care tasks. For others it may be holding down a job someday, or having a friend, or ordering at a restaurant, or even going to college. Regardless of where our child starts, we need to dare ourselves to imagine these possibilities.
In this space, I will continually challenge you to focus not on what “is” but what “is possible” for your child, despite his or her current functioning level. In my upcoming book Capable, I share my own parenting journey while weaving in the research, my professional experience and that of others along the way. What comes through loud and clear is that there are no quick fixes. Parenting is a game of inches. Ultimately, I hope this blog will provide you with the inspiration to transform what you think and how you respond to your child day in and day out so that over time he or she gets the all-important message that he is “capable”.
Ask yourself the following questions:
1. What are your hopes for your child?
2. What do you imagine your child doing in 5 years? 10 years years? as an adult?
Try it on: Imagine the possible. Use the questions above to imagine your desired future for your child. Use a journal to record your imagined future as a statement (e.g.,"My child will effectively communicate her needs","My child will enter the vocational program.", "My child will be a cub scout" etc.) Refine your imagined future statement as needed over time.
Next post... I will focus on how to build an environment for your child that reinforces the idea that he or she is capable!