Part I
November 5, 2015. This is the date we received our Autism Diagnosis. This is the date our journey in parenthood took a completely different path than we had envisioned. This is the date we were met with something we felt was greater than anything we could ever handle. Now, nearly 4.5 years later, I wish I could go back to that naïve, scared, confused self and say, you will get through this. You will learn more than you ever thought you could and be in a position to help educate, advocate, and support others. Take a breath and start walking on this journey.
Nothing could prepare me to pull up to a building that has “Center for Autism Related Disorders” written all over it. Nothing could prepare me for unbuckling my sweet three-year-old from their car seat, walking in and saying “Hi, we have an appointment today.” Nothing could prepare me for the months that led up to the diagnosis and the constant wondering and scrutinizing of how many words did he utter? Did he smile on his own at us? Did he point without prompting? Nothing could prepare me for how I might feel after hearing the words finally spoken - “He has Autism.” Nothing could prepare me for the out of body experience I had while listening to the developmental pediatrician, speech, and occupational therapy providers give us tips, guidance, and advice on which services were needed. Nothing could prepare me for the car ride home where I was sitting there wondering where do I even start? And nothing could prepare me for all the steps along the way I was about to encounter on our journey.
The car ride home after receiving our evaluation and diagnosis is still so vivid in my mind. As soon as we buckled both boys in the car and started the trek home from Kennedy Krieger, I immediately began to research speech and physical therapy services in our area. I felt helpless that I could not change the fact that our child now had a diagnosis of Autism Spectrum Disorder. All I could focus on was securing the necessary services and feel like I was “doing something.” I knew no one in my immediate circle who was raising a child with Autism. I felt so lost and extremely lonely. This is a big reason why I have begun to share our story. I want others to know they are not alone, Autism is not the worst thing your child can be diagnosed with, and depending on your mindset-Autism can make or break you and your family.
For better or worse, my mind naturally excels at thinking of every negative possibility and everything that needs to be done. I had to remind myself several times on that car ride home to take a breath and to tackle one task at a time. During our trip home, I was able to find three agencies that were providing services in our area. I left voicemails on a Friday afternoon, choked back tears, and knew I would not hear back until Monday (if at all). You could call it divine intervention, the universe aligning, or just plain old good luck, but the place that called us on Monday has been our team from the start. We continue to work with these providers over four years later, and they help keep it in perspective how far AZ has come on his journey. They have helped advocate alongside us at school for what AZ deserves - to remain in the least restrictive environment. They have hugged me as I cried sharing fears I have, included me in the development of treatment goals, and shared laughs in my Autism humor stories. I would be lost without these women. Thankfully, our team has continued to grow as I learned about additional recommended service providers.
As a side note, I received a call over two years later from one of the agencies saying they finally had room on their wait list to get AZ in. Fortunately, we had already found our team, but it reminded me not every family is as lucky. What would have happened if we had to wait over two years for services? What progress would have been lost, as every source states the earlier the intervention, the better the outcome? This is a principal reason why one of my passions is to help with advocacy and to help families know where to turn to find services. Families need to know there are other services out there and to not stop until they are able to secure the proper treatment for their child.
When I look back on our journey, I never could have anticipated working with all the incredible providers who would become some of our closest friends and confidants. I never could have anticipated all that I would learn about speech, occupational therapy, theory of mind, executive functioning, types and levels of discourse, Individualized Education Plans (IEPs), my rights as a parent of a child with special needs in the school and community, the normal grief reaction that can accompany a chronic diagnosis or disorder, the impact Autism can have on the person, the parents, the siblings, and the extended family, or about my own ability to grow in resiliency, comfort with the unknown, and flexible thinking when things suddenly change. Everything I learned was at a steady pace, despite my natural instinct to do crash courses by obsessively reading, learning, or practicing a new skill set. When we first got the diagnosis, I read nothing except Autism books for an entire year and a half. I slowly realized this is a marathon, not a sprint, and in order to not lose myself on this journey, I needed to pace myself. A dear friend and colleague reminded me that each intervention, or service we lined up for AZ would tax him, stress him, and push him to his limits. I had to pace that as well. Anyone who knows me knows I like to go all in. Our Autism journey has helped me learn to shift how I view progress, change, and tackling challenges. I had to strive for balance for us all, while I lovingly pieced it together.
