JACKSONVILLE, Fla. — IN HER OWN WORDS -- Jacksonville mother Courtney Webb was told her son has severe, non-verbal autism and would never speak. She replied with the guts of a loving mama bear: "You will not tell me his future."
Courtney's son, William, has made incredible progress. In fact, he does speak now. How did this mom defy the doctors? She shares her journey below.
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(Note: Courtney understands each child on the autism spectrum has individual needs. She is hoping to encourage families with her story, although what works for one child may not for another. Webb graduated the University of South Carolina with a BA in English Literature and Political Science. She got her Masters in Library and Information Science. She has over ten years experience working in children's services for special needs. She is now a 1st Grade teacher at Grace Episcopal Day School in Orange Park, FL.)
Courtney Webb's journey with her son, William:
The day your child is born is equal parts excitement, fear and absolute wonder with an overwhelming feeling of the purest joy imaginable. I believe it’s especially magnified that first moment you become a mother welcoming a child into this world and becoming more than just yourself or for some not just a couple but an actual family. In that eagerly awaited and final moment we count ten fingers then ten toes after listening for that first unforgettable cry with bated breath and only afterward do we release one of the most significant sighs of relief we will ever exhale. You did it. You brought a beautiful new healthy life into being. Your own miracle that we all know is exquisitely precious and in no way guaranteed.
For us, our first 12-15 months with our son were beyond magical. He was everything I had waited my whole life for. The moment he was born was the moment I stopped wondering if I would ever do anything in my life to truly make the world a better place. He was bright, inquisitive and bonded to both myself and my husband in a way that was beyond what could be expressed in mere words. I had stepped down from my career to be with him 24/7 and my husband worked from home so we were blessed to truly be together as a family unit nearly every moment of every day. Life was beyond beautiful. At the pediatrician’s office for each check-up, we would always check every developmental box on the questionnaire and breeze through with perfect scores. He was hitting every milestone and more. People would always remark on how he had the most intense and connected gaze as if he was looking at the world with eyes that knew far more beyond his days spent on this Earth thus far. He crawled on time, walked on time, spent his days at Gymboree meeting up for baby playdates and weekly library story time. With an infectious smile, non-stop belly giggles and those big baby blue eyes, he captivated anyone he met. When words began “da-da”, “ball” and “go” were the first to come out in that beyond adorable little babbling voice. Then like a living nightmare you kept expecting to wake up from; it all was gone in the blink of an eye.
It felt like literally overnight our son disappeared right before our eyes. As if someone had come and stolen him but left his body behind. He no longer answered to his name, he wouldn’t make eye contact and lacked that presence where before his gaze had been so locked in and knowing. He barely registered if other people were in the room beside his father and myself. He became obsessed with certain comfort objects and interests but couldn’t be bothered with interaction from other human beings including even us at times. Our beloved family dog became almost like a piece of furniture to him instead of a living breathing creature he had spent his whole life within a few feet of. He began obsessively lining up certain toys and loved nothing more than to stack random objects like soup cans one on top of the other as far up as he could go. By far however the most heartbreaking thing above all was that his voice was gone. He stopped speaking completely and even his babbling came to an almost total end. He was silent and in a world of his own while becoming super sensitive to everything in the environment around him from simple sounds to public places and even foods that had been his favorites. He was in a world that, try as we might, we just couldn’t find our way into and worst of all it was a world that he was miserable in. Gone were the big toothy grins and laughter when we would greet him in his crib first thing in the morning. Unexplainable tantrums began and when he would cry we most often had no idea what was wrong and no way of finding out. This was not normal and yet, again and again, we were told not to worry and let’s just wait and see. We would not wait and see. We weren’t those kinds of parents.
We began early intervention services for speech therapy, occupational therapy and eventually a natural environment approach to Applied Behavior Analysis therapy in our home as we waited for an official diagnosis. Ironically at the age of three when we finally did get his diagnosis, it was that of severe non-verbal autism from what is considered to be one of the top Autism centers in the country; ABA therapy was the only thing I was told we could do to help him. He needed 30 hours a week and we lived in a state that did not require insurance companies to provide any coverage. This translated to there is only one thing you can do to help your child and it’s approximately $36,000 a year out of pocket. Those words to a parent were both mind-blowing and truly terrifying. I was also told I needed to understand that even with this therapy I should prepare myself that he would never speak again, never have meaningful relationships with other people, including us, and absolutely never live anything resembling an independent life.
We personally chose to refuse to accept this. To refuse this notion that somehow our child’s entire life could be pigeonholed and foretold by an individual who had observed him for an hour and a half. We knew our child. He was still in there and I decided to immerse myself in what I knew best which was research. As a librarian, I had spent my career having people, including doctors, coming to me in search of answers and it was time that that skill and ability to ascertain quality and un-biased research and fact from fiction was put to use for my child. We began an intensive home program of therapies including other interventions overseen by a multi-disciplined team of specialists. One team member was an experienced occupational therapist. It was an offhand comment during a session that would lead us to reflex integration therapy and the Masgutova method in particular. She had been working with my son in a particular position and noticed he could not hold his head up. While she was not trained in reflex integration, she did have some knowledge of primitive reflexes and knew he should have integrated this reflex and obtained that ability prior to his first birthday. He was five years old at the time. I can remember to this day thinking that doesn’t make sense. I needed to look at any physical abnormality that might offer a clue to what had happened to my son just the way you would approach something physically “off” in a neuro-typical child. At the time I had no idea the kind of “holes” in development and maturation of typical brain development that these effects could have. For the most part, physically our son had relatively few issues on paper noted compared to many children with severe autism. For me, that comment stuck out and led me to my research into the role of primitive reflexes and the Masgutova Neuro-Sensory-Motor Reflex Integration method in particular. It would take another year to find an occupational therapist with the experience and high-level training we needed to begin to work with my son, but it would be a huge building block to what many had told us was impossible. Make no mistake, we have a long way to go but what he has achieved through hard work and the dedication of members of his various therapy teams is already life-changing. We’ll never stop giving him all we can to be all he can be no matter the cost or sacrifice, but he is the warrior.
One of the most pivotal ideas that I always try to make clear any time I tell our son and therefore our family’s story is that it is just that; our story. Even within the autism community, comparison is simply illogical and often ends in a lack of empathy and understanding especially if a child is on the lower functioning end of the spectrum that is generally less talked about, less accepted and rarely embraced by society. The spectrum is so vast that it simply cannot be compared nor can any individual child or their family. Are there similarities under this umbrella known as Autism Spectrum Disorder? Absolutely, but if I have learned anything as a parent and an educator it’s that every child is unique, as are their individual challenges and gifts, and it is no different with children with autism. This is just a glimpse into our story and how lucky we have been to find a method that has been successful for our child along with his daily hard work and determination. We have also been blessed with finding ways to provide access to what he needs which right now is not the case for the majority of children in his situation. Therapies are extremely expensive and rarely covered by insurance and even now we see movements to cut basic services and therefore even the chance for these children to succeed more and more every single day. Every child deserves a chance at their best life no matter their circumstances. If our story can help just one child and their family then sharing even a glimpse of it has been worth it.