A year ago I shared with SWFL Parent & Child readers my journey as a mother of a child diagnosed on the autism spectrum. A lot of things have changed since my article published: I am now a working, single mom. But the most important things have remained the same: my passion to advocate for causes dear to my heart and my love for my three sons, Sean, Jude and Matias. They are my everything.
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Mari Rubenstein is a mother to three boys, a committee member for STARabilty Foundation, and she’s the events and advancement manager for the Golisano Children’s Museum of Naples.
When Matias was diagnosed on the spectrum at just 16 months, my world came crashing down on me. Like with any life-changing situation, I allowed myself the time and space to grieve. My boss at the time shared with me the poem “Welcome to Holland,” which changed my perspective on the path I was embarking on. Since that day, I arrived in “Holland” and began to advocate for Matias. I found it key to establish the best team of therapists that I connected with around him, whose philosophy aligned with mine and who in time loved my son as if he was part of their family. After meeting with multiple therapists, I chose a play-based philosophy for all of Matias’ therapies, and to this day, I believe this was a key part of his early intervention program.
A year ago I focused on sharing with readers the transition of accepting the diagnosis and not giving up, or as the poem would say, the flight to Holland. We have been living with the diagnosis for five years now and I could not be prouder of Matias’ accomplishments. He is graduating from Pre-K in just a few weeks and will begin kindergarten in the fall. Many of the questions I had for my therapists in the last years have been answered at Matias’ pace. I recall the day I asked our neurologist if I would hear my son’s voice,and I remember her looking me in the eyes and saying, there are no “guarantees.” Truth is, there are no guarantees in life. Each day is a gift and we must live in the present. Matias is not only fully verbal now, but he is reading, communicating and playing with his peers. I could not have asked for more.
The one thing I have learned about the spectrum is that every journey and every child is different, and our expectations as parents are high and require patience. Matias has proven to me that the rewards of the sleeplessness nights, financial investments, love, care and dedication all come together in the end. He has taught me to live every day at its pace, not just Matias’ pace, but also my pace and our pace together.
If you are a parent embarking on this journey or know someone whose child was just diagnosed on the spectrum,please emphasize the importance of early intervention; it has been critical to Matias’ success.
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Matias
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Mari Rubenstein with her three boys
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My honest advice to parents is to leave no stone unturned when it comes to trying different therapies to see which works best for their child. Find the right connection provider to giver and stick with it, through the ups and the downs,and if fortunate enough to do so, never reduce therapies unless recommended by the providers.
My second piece of advice is to find your support group. It is important to be able to feel supported and understood.
My hopes are that Matias, at his own pace, with the continued support of his speech, occupational and horse-riding therapists, enters a typical classroom setting. Accepting that if this happens it will be at his pace gives me a sense of peace that I can’t express in words. What I can express in words is that the journey is challenging — draining at times. It has been a rollercoaster of tears, challenges,monumental milestones and most importantly the journey of learning and growing.
I hang onto the hope given to me by mothers in our community who have traveled my same journey while also advocating for their children, paving the way of inclusion and shining light on ability, not disability — like those behind the STARability Foundation. I know that all our journeys are different in many ways, but at the end of the day we are all advocating out of the pure love that stems from motherhood and wanting to make the journey easier or supportive for others who follow. In the words of the late Kobe Bryant, “Walk until the darkness is a memory and you become the sun on the next traveler’s horizon.” Please become the sun, shine the light on ability, and advocate for yourself and your children. Together, we can help make a difference.
Mari Rubenstein is a mother to three boys, a committee member for STARability Foundation, and she’s the events and advancement manager for the Golisano Children’s Museum of Naples.