Telling Your Story as a Parent of a Special Needs Child

We all have a story to tell whether we whisper or yell

Hunter is 7. He was 2 pounds at birth and his story is a complicated one to say the least — but oh, it’s a good one. It’s a story full of surprises and predictability, joy and fear, knowns and unknowns, and miracles … so many miracles. We hear in the special needs community that our child’s story isn’t ours to tell, that it's his or her story and should be private or told only when and if our child decides to share. Maybe this is true, but I’m starting to think that as Hunter's parents, time has taught us otherwise.

Hunter somehow has the greatest joy amid his 23 medical specialists and multiple diagnoses that qualify him as special needs. I stand firm, however, in my belief that his hatred for Target is in fact our greatest challenge, one this Mama continues to build an arsenal of survival techniques for on a weekly basis.

Photo courtesy of Smith Family

Lindsay Smith with her son Hunter.

Living Each Day to its Fullest

I had such high hopes on that Tuesday morning. We had successfully gotten through one doctor’s appointment and Hunter was his usual, joyful self in the car. As I pulled into the parking lot I had my sights set on that adrenaline-filled, power walk through the Target Dollar Spot. We could do this! Little did I know that today would be a green calculator day and not a red one.

With the red calculator and the tiny hands of my two little boys in my larger ones, we started our trek through the handicapped parking spots. As I saw those bright red cement balls and double doors getting ready to welcome me, Hunter stopped mid-stride. His feet spread in his combat stance, his body slowly pulled until our joined hands were stretched as far as they could go, and my grip got tighter as he lowered all 50 pounds of himself on to that brightly painted blue wheelchair on the parking lot pavement before he let out his combat scream. Hunter was ticked.

Hunter is nonverbal in the sense that he has limited words, however, our son communicates extremely well and very loudly. As his expressiveness grew louder on that warm pavement, it was my job to decipher why he was there in the first place. In our normal routine, his brother Abe and I close in so we can give him space to safely express himself. He yelled and carried on for about 274 minutes. OK, really it was more like three minutes, but if you’ve ever been that mom standing on the painted blue wheelchair in a Target parking lot, you know how long those three minutes feel.

As he threw the red calculator across to the next parking spot in true hopscotch fashion, he communicated quite clearly that it wasn’t a red day. I took this time to calmly talk to my son about how we’d walk back to the car when he was finished and get his green calculator. I told him that I understood that he was frustrated, but we needed to get milk, bread, peanut butter and even some lollipops for a special treat, but we needed to find a way to calm down and do our shopping.

All the while I was taking inventory of our surroundings while desperately trying to push down the intense feelings of failure, humiliation and even fear that I was feeling as I imagined what we looked like to those who were observing this moment. The ambulance was parked out front, meaning that our local paramedics were doing their daily and well-deserved coffee run. A sweet older couple was walking to their car. A mom with a newborn was headed inside. A teenager was pulling in and I wondered why she wasn’t in school. A woman who could be a grandma was talking on her phone in her car.

Hunter started to calm down, so I helped him up, fixed the hearing aid that had come loose, straightened his glasses, gave him a squeeze to tell him I was proud of him, then gave Abe a squeeze and told him I was proud of him, too. I took the hands of my two little boys once again, walked quickly back to the car to get the green calculator, and headed into the store where we bypassed the Dollar Spot and forgot to get the milk, but we made it! On our way out of the store about 472 minutes later … OK about 13 minutes later … that woman who could be a grandma stopped me at the double doors.

"Here it comes," I thought to myself.

"You did a great job, Mom," she said. "Those boys are so lucky that God chose you to be their mom."

The laundry list of what I could and should have done better was already running through my head … it had been for more than 16 minutes. Her words soothed my anxious heart and gave me the nerve to walk across that blue painted wheelchair one more time and get my boys home.

Lessons Learned

Here’s what I’ve learned. Our son tells his own story well, and your sweet thing probably does too. Whether it’s his hearing aids, her glasses, a wheelchair, braces on his legs, a speech impediment, a turn of the head or silly sounds they make, that swim diaper or life jacket at the pool on a child who seems a little too old, the repetitive noises, or the tantrums on the blue painted wheelchair, they are true story tellers. The story they tell, however, is a hard one to tell without someone to fill in the blanks and give the details. It is so tempting at times for me to push down the frustration I feel when I know someone just doesn’t get it, but then I have to ask myself if I’ve given them a chance to.

A few weeks ago we introduced Hunter to our community on social media. It was terrifying. But the truth is, Hunter is the best story teller. We’re just doing our best to build our arsenal of tools so we can create a life for him that is safe, full and understood. We’re filling in the details of the story he is already telling.

You were chosen to be your precious child’s parent. Everyone else was chosen for their community. Come alongside your child and tell his or her amazing story. Let your village in on the details. Give that "could-be grandma" a chance to see that it’s just a green calculator day and not a red one, and give yourself and your child a chance to soak up the safety, encouragement and understanding she has to offer when she has just a few more details to go on. Those green calculator days don’t feel so lonely when your community knows the story, and those red calculator days are that much sweeter.

Courtesy of the Smith Family

Lindsay Smith with her husband and four children.

Lindsay Smith is wife to Joey, mama to five children — one home-grown through biology, three heart-grown through adoption, and one waiting in Heaven. She is an advocate for special-needs parenting, open adoption, miscarriage, understanding infertility and every Mama, because we all need just a little extra grace. "From his fullness we have all received grace upon grace." John 1:16. She writes and tells stories at On Loan From Heaven on Facebook and at onloanfromheaven.com     

For support and to make more connections within the Charlotte area, consider joining this private Facebook Group: Special Friends Connection – Charlotte Area.  If you would like to contribute to this blog by sharing your story, please contact Gina Lorsson at specialfriendsCLTblog@gmail.com.