Cooper’s Story
Thursday, August 14, 2014, was a beautifully sunny day. We were about to welcome our baby boy into the world while sitting in a high-rise hospital room in downtown Chicago with sweeping views of Lake Michigan and a front row seat to the Air and Water Show. Then Cooper arrived, and life couldn’t be better!
Cooper entered the world, a tuft of baby penguin hair on his head and a little old man face. We couldn’t get enough of him. He came home to meet his big brother, Bruce, and life was GOOD! A few weeks passed, and although the little stinker wouldn’t sleep (still hasn’t grown out of that “phase”!), we were in a pure state of bliss.
I quickly enrolled him in a music class for infants, because what other three-month-old shouldn’t be exposed to soothing melodies at a young age? This little boy was destined to croon like John Mayer one day, after all! My heart was aflutter as we entered the room, and I placed Cooper on a blanket within the circle with the other mother-baby duos. As the songs began and I observed the other infants, my heart rate quickened even more, but the feeling had changed. It was one of anxiety, concern, even panic. Cooper wasn’t responding like the other children. He didn’t seem to notice the music, while the other children were cooing along and smiling to the tunes. Cooper wouldn’t roll over like the other babies. He couldn’t hold his head up during the tummy-time song like the others. Something was off, but I wasn’t sure what.
There were many times during the following months where I would feel my heart race and feel the dread-sweat beginning to form on my body. I kept thinking, “What am I doing wrong? I have wanted to be a mother my entire life. This is what I was BORN to do! Why am I so bad at this?” I would present these worries to the pediatrician. Cooper isn’t doing this yet, Cooper isn’t doing that yet. I was constantly met with the response that I was a first-time, worry-wart of a mother who should just let it go. “Cooper was fine.” Oh, how I wanted to believe that. Who wants to believe something is actually wrong with their child? The one who, if his singing career doesn’t pan out, will surely become the most distinguished brain surgeon the world ever knew!
His first birthday came, and at his party, other kids his age were walking around when he still could not even stand up. That was the last straw for me. I knew my worry wasn’t irrational. Something was wrong.
I took Cooper to a different practice, and at the initial consultation, they immediately noticed a sacral dimple. In a week’s time, we were meeting with a neurosurgeon who relayed that this could be a sign of a tethered spinal cord, but they needed to do an ultrasound to confirm this. This should have been done while he was a newborn, sleeping soundly. Now that he was a wiggly one-year-old, they needed to sedate him for the procedure. Turns out, he didn’t have a tethered spinal cord. WOO HOO! We thought we were in the clear. The neurosurgeon referred us to a neurologist for extra testing, but we didn’t think it meant much. Our son may just be behind a bit. Then the results came. It was Friday the 13th, and Cooper and I had just landed in Hilton Head ready for a week-long vacation in the sun! This is the part in the movie when the dark clouds come rolling in, and the character is stuck outside with no umbrella getting drenched. That was me. I was told Cooper had a rare chromosome disorder and would have severe speech delays, physical limitations, and moderate to severe intellectual disabilities. What now? The dreams and visions I had of showing his high school girlfriends embarrassing pictures of him as a toddler, dancing with him on his wedding day, walking the red carpet at the Grammy’s with him…gone. I couldn’t even bring myself to talk to our families for a few days. So many unknowns. I allowed myself to wallow, but not for long. Time to kick into high gear!
Early intervention therapy played a huge role in Cooper’s development. Starting at 13 months, we had a multitude of therapists in our home throughout the week. Speech therapists, physical therapists, occupational therapists, behavioral therapists, developmental therapists. At 2 ½, Cooper’s speech was still emerging, but he knew all of his letter sounds…just couldn’t string them together to make words. And he was walking! Funny story: we were in Charlotte visiting family and friends for Thanksgiving when we got the call from our neighbors in Chicago telling us our home was broken into and the thieves had also stolen our car. About ten minutes later, while Cameron was on the phone with the CPD, Cooper took his first string of steady steps at Romare Bearden Park!!! Even though we had been robbed, it was the most amazing day ever!
As Cooper grew, we began to research speech therapy schools in Chicago, and we found Chicago Speech Therapy Academy. Cooper went in for a trial day, and observing him behind a two-way mirror, I cried so many happy tears. He was amazing! This sweet little boy was doing everything the teachers asked. He was sitting quietly for circle time. He was walking in a line. I couldn’t believe it!
After a few months, we switched over to a school where Cooper could partake in physical therapy, Blue Bird Day. His progress continued, and slowly but surely, those letter sounds were turning into simple words. One of those words was “mama,” the most beautiful sound I’d ever heard.
In January of 2018, we left Chicago and moved down to Charlotte, NC. It has turned out to be one of the best decisions we have made for our family. Cooper is outdoors, where he thrives, ten months out of the year. And we’ve made incredible friends here. However, as the weather and lifestyle have been a game changer, we initially had a difficult (desperate) time finding therapeutic preschools that offered the resources we had experienced in Chicago. Thankfully, after a few months, we found Achieve Therapy Services. We call this Cooper’s “school,” but he is actually receiving ABA therapy there. His therapists have become family. There is no better feeling than knowing he is so loved by his “teachers” at school.
Cooper will be heading off to Kindergarten next year – cue the tears, both happy and sad! He has been completing a number of evaluations to make sure we find the right placement for him. The thought of him at a school with neurotypical children both terrifies and amazes me. There are so many unknowns, but all I can do is give my child the best chance at success by providing him with the tools and exposure needed to succeed.
Slowly, very slowly, the images that had once vanished for me crept back in. They are more realistic now. They don’t involve national award shows, but I can see Cooper wowing the crowd at a talent show someday. I picture him walking across a college campus, waving at friends as he makes his way to classes that prepare him to live independently. While I had once counted out the possibility of marriage for my son, I don’t think a romantic relationship is out of the picture for him. I mean, have you seen how handsome he is?!? It is for Cooper, and other children and adults like him, that we have started this foundation. To give them the instruments and encouragement to achieve what other individuals can. By raising awareness, we are giving individuals with intellectual and developmental disabilities a better shot at life.
With this in mind, please consider donating to The Cooper Royall Foundation.
Thank you for your support!
Katie Kinder Barradale, Co-founder and President