It is all about stamina

This program was necessary for learning to communicate better with my son. That is why I’ve chosen this as my first blog.

I am the mother of two wonderful adult sons, one of whom lives with autism spectrum disorder and its comorbidities.

My younger son’s diagnosis of ASD propelled me into the multi-dimensional role of acting as his steadfast advocate in all areas of his life to help him thrive through his diagnosis. I learned that I could not “change” others. However, I needed to change myself first by learning more about my son’s challenges while speaking less and listening more.

The journey of advocating continues to be demanding. Initially, I had no idea how to do this; I had to gain knowledge along the way, which caused me ongoing stress and sleepless nights. All I wanted to do was help my son and bring harmony back to our home.

In 2011, I joined the Livingston Parent Self-Help Support Group (LPSHSG) in Livingston, New Jersey, my hometown. The group’s primary purpose was to support parents dealing with unhealthy behavioral issues of their children, young adult children, and adults. I learned how to establish rules, consequences, and consistency in my parenting, which ultimately helped transform our complicated family dynamic structure into a more positive, inner peaceful state. Yes, adults, as well as their children, need structure.

I immersed myself in this group and became one of its leaders. I obtained much solace and insight in helping other parents in need. Seeing the group philosophy work for different families gave me the energy and hope to continue using these strategies to help my family, and they ultimately did.

Over several years, I wrote a 125-page manuscript about my journey with my son through his diagnosis, documenting what we grappled with daily, inspirational stories, and all I learned from the experiences. My son wanted to be positive and stay in the present, not the past, so we both decided not to publish the manuscript. However, after speaking with my son, we both like sharing what we’ve learned with others on my blog. It was still cathartic for me to write and match words to how I felt then. I was offered the opportunity – with my younger son’s knowledge and blessing – to contribute a chapter to the book, Superheroes on the Spectrum, published in November 2023, which allowed me to focus on his successes and achievements. It was so exciting to be writing about his remarkable growth. I am very proud of his resilience. We viewed the book cover on the Times Square Billboard in New York City, up in lights!

One of the most important goals we achieved together was getting him out of a group home setting and into an apartment with a caregiver through self-direction. My younger son has shared that he wants to live independently with his girlfriend in a house with a lot of property one day.

It has been a long road filled with unconditional love, struggles, uplifting stories, perseverance, tools that we learned along the way, and the undertaking of my son’s passage to a more balanced life. For his 25th birthday, he was discharged from a group home and handed the keys to a beautiful apartment. It was not an easy feat, and it was a culmination of many people helping him along the way. He is starting on the road toward more independence. There was a misunderstanding on my part and many others about how to help him when he arrived into our lives. I scoured the internet, spoke with professionals, and joined self-help groups to begin the hard work of understanding autism and its comorbidities and how I could’ve helped him more if I had only known then what I know now. That is why I want to share what I learned with you.

By implementing the STAMINA Program (Stop, Tap In, Accept, Monitor, Implement, Neutral, Act) that I created, along with unconditional love, kindness, respect, soft loving voices, rules, consequences, and consistency, we can help role model these crucial traits for our children. It was one of the most significant changes that helped my children succeed. We all have to be in this together.

The definition of the word stamina is the ability to sustain a prolonged physical or mental effort. Any mother of a child with developmental, mental, or any other kind of disability knows you need strength to succeed. I chose the word “stamina” to build my Program around.

The STAMINA Program helped us through some of the most challenging times as my son and I tried to communicate. This program worked for us. In any escalation situation (barring an emergency if your child is hurting themselves or someone else, you should call 911), the first thing to do is to:

Think of every meltdown as an opportunity to communicate with your child without talking but making them feel heard.

The strategies I’ve outlined may seem simple. I can promise they are not, but they proved to be one of the most beneficial exercises that helped me and my son bond.

Also, know for yourself that this is a process. There are still times when I just remember to repeat the mantra: STAMINA, STAMINA, STAMINA!

“Start by doing what is necessary; then do what’s possible, and suddenly you are doing the impossible.” St. Francis Assisi