Dear Vincent,

Blog post #1 - The why

02/3/23

When I feel out of control or confused about something I actively seek information. My tenacity for knowledge and ability to comprehend and remember is one of my greatest strengths. When Vincent received his diagnosis at age three of autism spectrum disorder with accompanying language impairment I was triggered with fear over the uncertainty of my son’s future. I also felt relief and encouragement because I finally had a place to start helping my son. ASD is essentially common, it is well-funded and researched and there is a plethora of resources available immediately. It also can be an overwhelming amount of information and much of it did not pertain to Vincent or only partially. Additionally, there are many overlapping disorders that also fall on the neurological spectrum that add a confusing complexity as well, such as ADHD and Sensory Processing Disorder or Dysfunction. While there are many common aspects of ASD, truly each person on the spectrum is different.

At first, I relied heavily on the professionals that were working with my son before his diagnosis due to speech and sensory challenges, and after the diagnosis the BCBA and behavioral therapists. After a while, with a lot of independent research under my belt I felt confident that I was capable to represent my son. I never want to be a voice talking over his own or anyone else on the spectrum but for now, I am my son’s best option. I will use my voice for him loudly and often. One of my many wishes for Vincent is one day for him to be able to explain to me how he experiences the world. For now, I observe, I read and I ask.

I realized pretty early on that although this diagnosis is fairly common, many people in our direct circle of friends, family, and neighbors knew very little beyond stereotypes. I was displeased with the readily available handouts I found online intended for these audiences. Much of the information presented didn’t apply to my son and they were long and drawn-out documents that no one I knew was actually going to read. I found myself repeatedly answering one question with two answers. The general ASD answer and the Vincent-specific answer. I was, to say the least, exhausted, frustrated, and discouraged.

My day-to-day job involves a real estate development project of a highly technical nature. When I took the job, I immediately started researching the subject outside of the scope of what my role required. I not only found it interesting, but it made me better at my job. Another skill I have is to distill complicated information into simple, relatable knowledge. I can pull what is important from the details and present the basics quite clearly. One day, I asked myself, why not take the corporate skill set I have and apply that to my home life? I was already essentially doing the exact same thing at work that I was doing at home the only difference was my title. I went to my computer, and I made a presentation about my Son. I made it visually interesting, highlighting the key takeaways I wanted the reader to have. It was now the only document in the world that could accurately describe my son to a level that I felt appropriate. I simultaneously created a word template with the thought others might benefit from the same tool. Also, this could be used for any reason, any disorder, any challenge, etc.

I distributed the deck to family, friends, and neighbors. With permission, I gave it to the therapy clinics, school, and parents of the kids in Vincent’s class. I sent it ahead of playdates and to his pediatrician. The response was phenomenal. I started talking about it online a little and while not one of the major ASD advocacy groups got back to me when I pitched the idea for a FREE resource different from anything else I’d seen out there, a few parents did. I kept thinking of the idea of paying it forward. The few people that asked me for a copy of the template might now have a way to directly change their child’s world and the trickle effect that may have.

I thought I couldn’t change the whole world for my son, so I changed my goal to educating his community so I could change his world but the truth is I am just putting limits on myself while asking others not to do the same to my son. Why? Fear of failing. If my experiences, thoughts, ideas, and resources help one person, I have changed the world and I am proud of that. I am going to stop telling myself what I can’t do and I am going to ask the world to stop telling the neurodiverse what they can’t do as well. Let us show them what we can.

If your community knows how to better support your child or loved one. If they have the power of information to help inform their behavior and decisions when interacting with those on the spectrum in a very specific way to them, we all win.

Good luck and know you are not alone in your journey.

Samantha Politzer Weiss