Well, it has been ages since I have written, and what better time to start again than during April...Autism Awareness month? Many of you who read my blog already know that we are hosting a fundraising event in September to help fund therapy and educational and growth opportunities for our Nickel Pickle. We are hosting a 5&10K run/walk at Hines Park, and the website for registration is now live. I have been overwhelmed by the excitement for participation by our friends and family, and also by the generosity of our many sponsors out there. Since the link to my blog has been posted on our registration website, and likely many participants and sponsors who do not know us well will be clicking the link, I wanted to share a bit about about our journey, and what exactly they are supporting if participating in this race. I had written this initially to share only on the registration website, but I have decided to share here since I also have acquired many blog followers in previous months of whom have not even seen a single recent post from me. With that, I figured this would be a good "re-introduction" to our family, and a brief summary of what the purpose of this race is. If you are a new reader, thank you for following! If you are a race participant or sponsor, thank you from the bottom of our hearts for your support! And here is our story....
Six years ago, our family was only just beginning, and was largely clueless about topics such as Cerebral Palsy and Autism. Why would we know in detail of such things? These were conditions that affected other people...people for whom we had compassion, but to whom we never dreamed we would ever really understand or relate. We were so very unprepared and naive for the enormous punch in the gut that we would receive after we were blessed with our first little baby boy.
Nicholas William, a seemingly healthy, and well over nine pound full-term beautiful baby boy, was born in the fall of 2008. Despite a healthy pregnancy, and a normal delivery via c-section, the feeding and muscle tone issues we began to recognize in him were almost immediate. However, months later, these issues were still donned by the “experts” as “not a reason for major concern.” At only 3 months of age, we were completely unprepared for what path these minor signs were slowly pointing ALL of our lives towards...
By the Spring of 2009, my intuition was nagging at me that something was just not okay. It was more than minor, yet global “developmental delays” (a phrase I would become all too familiar with.) At the age of 6 months, Nicholas still wasn’t able to hold a bottle on his own, let alone transition to a cup. He was incapable of sitting up in a chair without significant support, and he wasn’t able to crawl around on the floor like most babies in this age group were able, and expected to by most standards. Despite my concerns, over and over by friends, family, and doctors alike, I was urged not to worry. I was simply being overprotective and inexperienced since he was our first child. After all, “all kids develop at their own pace,” we were told repeatedly by so many. We were assured that he was a perfectly healthy, albeit slightly behind, little guy who would be just fine!!! And trust me when I say, I wanted to believe this more than any person on earth, but I simply didn’t. As a result of the constant reassurances, Nicholas’ dad was in denial of the potential that something was wrong. After all, who WANTS to see an issue when all of the experts agree that there isn’t one. And despite my suspicions, he insisted, like others, that “He is FINE! You are overreacting!” Dialogue between us on this topic all but ceased because the idea of entertaining it was simply too frightening, and too difficult.
However, after months of researching, heartache, and continued disappointment over missed milestones, Nicholas’ pediatrician eventually provided the unfortunate validation of my concerns, that had, over time, also become Chris’ concerns. He advised us to see a neurologist for an MRI and any other recommended testing, as well as to contact the local school districts’ special education program to evaluate our son in the event that he might (and likely would, they advised) qualify for services. Services? We didn’t even know what this meant! Our family was mentally not prepared for what this recommendation even was implying at that time, but still pursued every bit of advice that was accessible to us, inherently understanding the gravity of the situation.
Shortly after his 1st birthday, we were introduced to a whole new version of parenting. We were given the diagnosis, in quite an abrupt manner, that our son “has Hypotonic Cerebral Palsy.” This is a shock you cannot prepare for. The numbness you experience in the moment when a doctor gives your child a diagnosis that will forever change your idea of who you envisioned him to be into a person you had never imagined he could ever be is simply unexplainable. The pain associated with it cannot adequately be put into words. At the young age of one, and with a vague diagnosis such as this, doctors aren’t able, and frankly aren’t willing to predict what the future holds for your child. In that moment, all of your fears and worries surface as if all at the same time, and you yearn desperately for the answers that no one can ever give you. EVER. Would he ever say Momma or Dadda? Would he ever stand up and take those first few precious steps on his own? Or even more basically, would he ever be able to perform the simplest self-care tasks, such as feed and dress himself, or go to the bathroom without assistance? These are developmental milestones that most parents take for granted when they watch their child develop, and in that very instant, the certainty of the achievement of these very basic skills was all but ripped from our grasp. It was heart wrenching, frustrating, anger-provoking, and so deflating all at the same time. Everything you have ever imagined doing with your new child as they grow older is shattered like a crystal glass on the floor in that one single moment. Instead, you are left with heartache and and a vast head full of vacancy and question marks. No one has real answers. In the coming days, weeks, months and years, we began to learn a whole new vocabulary and parenting activities which included occupational therapy, physical therapy and speech therapy, along with the enormous slews of new acronyms.
And there it was….therein began our new journey….specialists, tests, waiting rooms, physical therapy, occupational therapy, speech therapy, tears, fears, isolation, and sheer mental exhaustion. While most kids at this age were at play dates or doing fun activities at home or daycare, Nicholas was, almost daily, in a therapy of some sort working on mastering simple basic life skills. All the while, though some progress was being made, once again I had a nagging suspicion that “hypotonic cerebral palsy” just didn’t completely add up….or at least wasn’t all there was to Nicholas’ complexities. And the research ensued, once again…..
Fast forward to 2012. We sought out help for an autism evaluation, which at the time, cost in excess of $2000 and was not covered by insurance. We were referred to a research study through a local hospital, that would provide this evaluation a no cost if we would agree to participate in the study for at least 6 months. We jumped at this opportunity, wanting to ensure that we had a complete and proper diagnosis in order to provide the correct therapies for him.
After evaluating Mr. Nickel Pickle, our suspicion of his Autism diagnosis was confirmed. We were, this time, informed that our son has a lifelong disorder that is treatable, but not curable, and results in very unpredictable outcomes depending on the individual and the interventions used for treatment. We were not entirely surprised, and while this news was still difficult for us to digest, by this point, we were well out of denial, and well aware that our son was going to need an enormous amount of help no matter what the diagnosis was called.
The biggest change we made upon learning of son’s autism was the addition of ABA (applied behavioral analysis) therapy to his “diet.” And the fastest thing we learned was that unlike with many other childhood diagnoses, while many types of treatments, therapies and interventions are available, many and most are not covered by insurance companies. ABA is the only experimentally verified therapy that has shown positive results for many kids with Autism, and therefore our obvious first step. However, we were frustrated to learn that the cost was nearly $1000/week for this type of intensive therapy, and at that time, was not covered under any insurance policies. Despite this, we forged ahead and put him in a program. The result was the beginning of our window into his potential, and never for a minute will we regret this decision, despite the enormous debt that we incurred as a result. That said, this is not the only therapy that he, or many other children on the spectrum could benefit from, and likewise is also not always beneficial for every child with autism. Herein lies the financial dilemma of having a child with this specific disability, or as I like to think of it, having a child who is “differently-abled.”
Many interventions are available that might better suit a specific child with autism to help maximize his or her potential, but most often, they are not covered by traditional insurance, and there are no guarantees that a particular child will benefit from them. After all, since we are still uncertain about the causes of autism, the treatments are all still very anecdotal and individual. Some things work for some individuals, but not for others. Hippotherapy (therapy using horses), PLAY PROJECT ™ therapy, feeding therapies (not required for all autistic children,) craniosacral therapies, DAN Doctors, service dogs, and various other programs are just a handful of “available” interventions, and all claim some success for many children, but are all extremely expensive. As a parent, you are forced to make a decision on how to maximize your child’s potential and address their greatest developmental needs based not on what you really believe may help him, but on your financial ability to pay. It is a heartbreaking choice, and one that we have made over and over again.
The cost of providing care for a person with autism in the U.S. is an estimated $1.4 million over the span of their lifetime, according to a study funded by advocacy group Autism Speaks, and for those lower -functioning individuals, the cost is even higher. In our personal experience, we are still struggling to receive reimbursement for ABA therapies that, by law should have been covered when the law changed over two years ago. This, we know, is only the beginning of our financial struggles.
We are fortunate to have wonderful friends and family who have helped us along the way thus far, but are still also now facing this dire situation. Rather than crumble, we decided to seek another approach. Autism affects not only Nicholas' future, but the future of our other two children. We simply cannot and will not give up on any of them. We are humbly asking to enlist your help by joining us in this fundraising event intended to increase access to greatly needed resources for our son. The funds raised will faithfully be put towards therapies, treatments, and educational opportunities that will allow him to maximize his potential, which we believe to be very great! We have a long road ahead of us, and as the years pass, the needs and complexities of his diagnosis will change, and will continue to affect our family in so many ways. As parents, we will stop at nothing to pursue his ability to live independently one day, and enjoy the best life that he can while still providing our other children with what they also deserve….a bright future! We hope to begin this annual event in order to make this happen for him, our family, and potentially, for other families as well! Please join us in what we hope to be an annual event to benefit Nicholas, and eventually, a way that we can give back to other families who also desperately need help for their children on the spectrum. Thank you sincerely for your participation! Until all the pieces fit...
