This post was originally written for my friend Tricia Oakes at Southern Spark, who decided to shut down her blog.
Life Lessons from a Special Needs Child
After giving birth to two healthy boys, it was inevitable that friends and acquaintances would ask if I was “trying for a girl” while pregnant with my third child. Without hesitation I’d respond, “Hell yeah, I want a girl! I need at least one toilet seat in this house in the down position don’t I?”
Looking back, I realize I rarely, if ever, responded placidly “I just want a healthy child” because “duh!” that was a given. Every pregnant woman wants a child with ten perfect fingers and toes, and pink-hued skin, and a loud, robust cry when they make their grand entrance into the world, because that is what’s suppose to happen. Right?
But the Rolling Stones said it best, “You can’t always get what you want.”
On September 16, 1992, I received the baby girl I so desperately wanted. Unfortunately, she entered the world with the umbilical cord wrapped around her neck, a frighteningly low Apgar score, and with no apparent gag response. Within minutes of her birth she was whisked away by a team of pediatric specialists with assurances that “we would see her soon.”
Minutes turned into hours, and we soon discovered that our daughter had come into this world with numerous physical and cognitive challenges. The doctors were baffled, and after several days of poking and prodding and medical head scratching, they predicted that she would most likely have a brief and lamentable life.
But what happens when the “experts” are wrong? What if this “less-than-perfect” child has her own agenda? What if SHE has plans to set the world straight about what someone with a cognitive disability looks like or what their contributions to the world will be?
Admittedly, being handed a child with physical and cognitive disabilities surprised us, challenged us, and sent us blindly down a path without a compass. It was a path that Kinsey had chosen for us, and we soon discovered that she was going to take us on a pretty amazing journey. It hasn’t always been easy, but she has shown us that living a life askew may not be such a terrible thing after all.
Here are a few life lessons she has taught us along the way:
Find friendship wherever you go – Kinsey has been given many gifts, and one of the greatest is her ability to accept everyone – without judgement. This is rather ironic, because people with disabilities are often seen, judged, and then dismissed in a matter of seconds. Not so with Kinsey. She is not afraid to smile at strangers, introduce herself, ask them how they are doing, and of course tell them about herself. When I try to intervene because I think she is bothering them, she clasps their hand, looks me straight in the eye and pronounces them as “my new friend.” I’ve seen the most grim looking people, melt in her presence and wave me off when I try and redirect her. “No, of course she isn’t bothering me!” they declare. “We were just talking about (you name it)”, and it is I who is being redirected! And the lesson learned here? Disarm someone with your smile, and show genuine interest and you are well on your way to making a new friend.
Set your goals high and prepare to amaze yourself – During Kinsey’s senior year of high school she participated in a work internship program. This gave students the opportunity to gain valuable work experience at various businesses in the community. Students rotated through a sheltered work environment at 6-week increments. Kinsey, the ultimate people person was now in her element. Helping people, and being appreciated for a job well done, Kinsey flourished in this program. Wanting even more challenge, she told her job coach that she wanted to work at JC Penney, her favorite retailer. She was so serious in her intention that she told her job coach she “was going to put her foot down” (complete with dramatic foot stamp) and ask for a job at JCP. Since she was already well known from our frequent trips to the store, her job coach decided to ask if Kinsey could intern (for free) several hours a week. Their response? Internships were not available, but if she was serious, she could apply online for a paid position. Buoyed by Kinsey’s unwavering belief that “of course JCP will want to hire me” her job coach pressed forward and assisted Kinsey on her quest for employment. Within hours of applying for a job, Kinsey had an interview scheduled for the next day. Two hours after the interview, Kinsey was offered a job. This week Kinsey will be celebrating her 2nd anniversary as a JCP employee. One that I may add, has received numerous customer service awards and the love and admiration of her fellow employees. No doubt Kinsey channeled her inner Coco Chanel who declared, “Success is most often achieved by those who don’t know that failure is inevitable.”
The word NO does not really mean no. It just gives you one more opportunity to keep asking for what you want. And more often than not, getting it. Case in point, last Christmas Kinsey received her first American Girl doll from Santa/Grandma. Within a week she was asking for a second doll. Our resolve was strong, and she was met with blank stares and a firm NO. If you think this quashed her desire for another doll, then you don’t know her true genius. She came up with a fail-proof Plan B. Using her best friend “Google” she discovered that there was an American Girl doll store in Dallas. She then proceeded to input our home address and that of the store and printed out driving directions, along with suggested hotels in the Dallas area and handed it to her dad…so he wouldn’t get lost. Cognitively delayed? I don’t think so. How do you say no to THAT? Especially when she agrees to pay for the doll, clothes and accessories herself from her earnings at JC Penney? And that third AG doll she just purchased? Clearly she was using Jedi mind tricks to get that one as well!
Perhaps the aging bad boys of rock understand the mysteries of life better than I thought. It’s true, “You can’t always get what you want. But if you try sometimes, well you might find you get what you need.”
Thank you Kinsey. You demonstrate how to embrace life and live it large, regardless of the challenges the Universe has placed before you. I need to pay better attention.