Our son, Cole Aiden Gottlieb, has Spastic Quadriplegia Cerebral Palsy. At only 8 years old, he has already experienced more than many people will in their lifetime. Due to Cole’s spasticity within his arms and legs, dressing can be difficult. Immediately at his birth, my wife, Jen, and I knew that he would have to face many struggles, but at the time, the ease of dressing him and what he might be able to wear was the last thing on our minds. Here is Cole’s story. On May 14, 2009, what started as a typical pregnancy check-up turned into the scariest day of our lives. After Jen’s 36-week examination, our doctor felt she was carrying smaller than she should have been. As expectant parents, we were surprised since up until that moment, all of the appointments were nothing out of the norm and we were told everything was moving on track. After an ultrasound and speaking with a Perinatal Specialist, we were told there was a possibility that our unborn child may have short limbs, and possibly Down syndrome. We were advised that he needed to be delivered immediately. We were shocked at the news since we had done everything “by the book” from the beginning. Three hours later, our son Cole had arrived via C-Section at 4 pounds, 5 ounces. Cole was immediately rushed to the NICU where he spent the first 11 days of his life. During this time, Jen and I were told that Cole was having many issues and things were “touch and go.” The furthest thought from our minds was that we would be spending the beginning days of our son’s life with him in the NICU. Not knowing what Cole’s outcome would be was a very scary and heart-wrenching experience for us.
During these days, we were told that Cole’s heart was too large for his chest cavity, he had a very low blood platelet count, and that barely any salt or sugar was in his system. Spending day and night at the hospital staring at Cole through an incubator was something that we never would have expected. The only thing we could do was hope and pray. Thankfully, eleven days later, after many tests and 24-hour supervision, we were able to take Cole home.
For the first few months, everything seemed normal to Jen and me. We assumed Cole was a typical baby, smiling, crying, eating and sleeping. But at 4 months, he was not meeting expected milestones of other babies his age. Next, Cole started physical therapy in the hopes this would improve his development. Seven months later we brought Cole for a check-up and the nurse practitioner noticed Cole’s legs crossing when he was picked up under his arms. We were told that this was a possible sign of Cerebral Palsy and we were advised to see a neurologist. After numerous tests, we were given the diagnosis that Cole had Spastic Quadriplegia Cerebral Palsy. Neither Jen nor I knew anything about Cerebral Palsy. We didn’t know what caused it. We didn’t know how it would affect our child’s life, or ours. We didn’t know who to speak to or who to ask for help. What we did find out was that Cole’s brain was deprived of oxygen about a month prior to being born, which caused white matter disease in his brain.
Fast forward to the present, Cole is now 8 years old. He has had numerous surgeries for his eyes, spine, and adductors. He has had physical, occupational and speech therapies for several years. Despite the unforeseen challenges our family has endured, Cole is a very happy, strong, and fun child. The only one in his class with a physical disability, Cole is now getting ready to enter the 3rd grade in a mainstream classroom that is in a school of almost 1,000 students. But Cole has shown us and everyone he meets the true meaning of inner strength. At such a young age, Cole has already become a leader in representing kids with differences. For example, he has been an ambassador child for the March of Dimes, Easter Seals and currently for Clinics Can Help in Palm Beach County.
Dressing Cole has been difficult at times. When his body stiffens, for example, dressing can be difficult and can take a lot of time. However, we were thrilled when Jen and I heard about Runway of Dreams and their efforts to work with mainstream brands to adapt clothing lines for people with disabilities. The adaptations incorporate magnets and Velcro in place of zippers and buttons along the waist and leg areas in pants and on shirts. This adaptive clothing has helped immensely. As Cole gets older, dressing himself will be simple despite his minimal fine and gross motor skills. Most recently, Cole was even chosen to be a model for the Runway of Dreams Foundation 2nd Annual Gala and Runway Show in NYC! The night was incredible and amazing in every way. From the experience of being a part of something so important and meaningful in our lives as well as the lives of so many others with different abilities to meeting so many wonderful people who were all there for the same reason. The Runway of Dreams Foundation works to broaden the reach of adaptive clothing and promote the differently-abled community in the fashion industry by providing opportunities such as these. In addition to this experience, Cole has also been fortunate to model for other companies, such as Toys R Us and Walmart.
It is our hope that Cole will bring awareness and perhaps acceptance about people with differences to both his classmates and those he comes in contact with as he gets older. He has been a huge inspiration to us and those around him. We are certain that the older Cole gets the stronger he will become and we believe he will be able to accomplish anything. Most importantly, we have a beautiful child who smiles, is funny, very smart and a positive influence on everyone with whom he comes into contact. Cole’s personality is infectious and he is our life.