It’s the first day of school and I’m sitting in my son’s classroom with him. It’s my choice to be here with him today, so I can support his transition into his new class. Our son perseveres with Cerebral Palsy and Hearing Loss. He attends school in his wheelchair, and wears hearing aids. He is in a regular classroom, and is supported by an assistant.
I’m here so I can inform his new teacher and assistant about the best ways they can support him in class. I’m here so I can encourage him to speak up, and ask for what he needs. I’m here because as his parent, I am an expert on my son.
Our first-born son was born 4 months prematurely, and diagnosed with Quadraplegic Spastic Cerebral Palsy when he was 6 months old. I remember the moment the doctor used these words to describe our son. I remember the feelings of not knowing, not understanding, fear, anger, and despair which suddenly washed over me. I remember wanting to grab him and run out of the room as fast as I could, and go as far as I could go. I remember fighting back the tears, which fought back even harder and started rushing down my face. Unable to speak, I remember shuffling to gather my baby and our belongings, and leaving our NICU (Neonatal Intensive Care Unit) Pediatric Development appointment.
The congested downtown core of Toronto during the lunchtime rush hour seemed calm and serene that day, compared to the rush of my own thoughts and emotions. As I pushed the stroller along, and looked at my smiling baby boy, the questions “How dare they?” and “What does this mean?” were battling it out in my mind. A part of me knew that our son was miraculous and perfect, while another part of me needed more answers. I had no idea what “Cerebral Palsy” really meant, and it felt as though in an instant I had no idea who or what I was dealing with. It turned out I was half right. I had no idea what I was dealing with, but whom I was dealing with, our perfect baby boy, had remained unchanged. I remember my poor concerned father showing up at our home with a stack of printouts from the Internet. Hundreds of sheets of paper, covered with thousands of words, to help explain to me who my baby son was, what I should expect from him, and what I shouldn’t expect from him. Later on that evening, I sat alone with myself, and as I held my breath, I flipped through a few of these pages, labeled “Cerebral Palsy” – the results of a search to find meaning to this diagnosis which had rocked my world. A few pages were all I could take of this large umbrella of scenarios and possibilities of what Cerebral Palsy looked like. I put them down, and I quickly decided that these pieces of paper were not going to inform us about our son.
…the best way we could facilitate our son’s unique needs was simply to get to know him.
This was the beginning of a series of events, which led to our awareness that the best way we could facilitate our son’s unique needs was simply, to get to know him. We recognized that our son was more than a diagnosis, or a label, and that the only limitations he had were the ones we allowed ourselves to believe in.
While observing him grow and develop, we grew and developed. The greatest thing about observing and nurturing a young person is that it is the most amazing thing one can do. We learned that fostering human growth and development while different for each unique individual requires the same ingredients for all – awareness, allowance, acceptance, willingness, compassion, encouragement, nurturing and, lots of love.
We soon understood that Human Potential, when activated is a miraculous thing, and while consulting with experts in their respective fields regarding our son, we were most beneficial when we showed up as the experts on our son. By offering our insights on his unique abilities and nature, we were able to advocate for the best choices for him.
We recognized that our son was more than a diagnosis or a label, and that the only limitations he had were the ones we allowed ourselves to believe in.
Today our son is persevering with a newly amended diagnosis of Bilateral Spastic Cerebral Palsy – which means his “permanent” brain damage has shifted. We’ve learned about neuroplasticity and the ability of the human brain to create new neural pathways. And just like his brain our son has continually found his own way of doing what his heart desires, because when there is a heartfelt will, there is a heartfelt way. A year ago, he won a silver medal in a ballroom dancing competition with his class. Last year he won third place at a deaf and hard of hearing speech competition. He spent this summer sailing a boat on Lake Ontario, and cycling with the family. Not one page of the pieces of paper defining Cerebral Palsy, could have ever defined what our son has so far been able to achieve.
When I was asked to offer an article for considered submission to Inspired Parenting Magazine, by my dear friend Judy Julin, who has been witnessing our miraculous journey unfold, I was humbled to be able to share among a circle of leading experts in children’s wellness and human potential. I knew I had much to share, but I wondered what it was that people needed to hear the most, and the answer came rushing to me with crystal clarity. It is that people need to know that no matter what life circumstances appear to be surrounding them and their children, they are the experts on their unique children. This does not mean that other experts and their opinions should not be consulted, because absolutely they should – but the effect should be a conscious collaboration for the highest and best for the child. In our experience, we’ve found that sometimes the best choice was medical intervention, while other times it was a teddy bear picnic under the natural healing energy of the trees! Whether you’re a parent of a child with special needs, or a parent of a typically developing child, your experiences will have many other solutions unique to you and your family, and you’ll learn exactly what you need to learn along the way, you will find all the answers to all your questions because naturally, YOU are an expert on your unique child.
ABOUT THE AUTHOR
IPEK “Luv” WELLINGTON is an artist, singer\songwriter, life partner, and special needs mother of three boys, living in Toronto, Canada with her family. Her oldest son perseveres with Cerebral Palsy and Hearing Loss, which has led Ipek on an unfolding journey of the discovery of human potential.
Serving as an advocate for her family’s special needs, has led Ipek to advocacy for assisting the physically challenged with legislation and or compliances for their well being.
Passionate about writing, singing, yoga, speaking, healing, inspiring, empowering, sharing, wellness & nutrition, beauty, and human potential, Ipek spends her free time being inspired, and expressing her heart and her authentic experiences living in the city while navigating life with a family member in a wheelchair.