Iย danced into the position of being a Special Needs Mom in a unique way. When my husband and I began dating, we both had children from previous relationships, and this would mark the beginning of my special needs parenting journey.
When I met our son, Jay, he was 3. He had just received his first wheelchair and was preparing for his academic journey. Throughout the past 17 years, I have gained a wealth of knowledge, experience and ultimately fostered a love that is unequivocally nothing that I could have ever imagined. I learned the importance of advocacy, not only through the lens of protest, but also by being a vital voice and decision maker. I developed the ability to be malleable in areas I didnโt know I could, and finally, I learned the depths of love and how it can impact you eternally.ย
Advocacyย
When I came into Jayโs life, I had just wrapped up my teenage years in college. I quickly learned what advocacy was and adopted it as a tool I would use, because I understood that our advocacy as parents would be integral to his care (medically and interpersonally) and how others in this world would see him. This advocacy would serve as a springboard for me to advocate for other special needs students and families in the community whose challenges mirrored ours.
I developed a keen sense of what it means to say something and ask questions, in an effort to get things done and keep conversations going.ย
Throughout this journey, I learned that my advocacy would become Jayโs voice. Jay did not have the ability to speak, so using our voice as parents would become one of the greatest voices we would ever have.
This advocacy grew in ways I could never imagine and allowed me to have conversations that would change the trajectory of his social and academic life, which was beautiful to watch.ย
Malleability
Being flexible is a characteristic you adopt quickly because being a parent requires us to conform and adapt. However, as a parent of a special needs child, that level of flexibility is elevated.ย
Throughout the years, I rapidly learned that Jayโs care would be a rollercoaster ride and require us to live life on the edge. This edge living would not be frightening, but in a way would require us to accept โNoโ more easily and be warriors during challenging situations. These situations would encompass some obvious complexities, like limited access to adequate spaces to maneuver him in his wheelchair, or not attending certain events because spaces are not equipped to support individuals like him, meaning families like ours.ย
There are two situations I can recall that stick with me the most in being reminded that our challenges belong to us as a family, not others: Being turned away from a storytime because the location was not wheelchair accessible and not being able to join family on a tour because the trolley was not wheelchair accessible. This was like a dagger, because it further confirmed that there would be things our family would be excluded from, and we had to accept that our reality would encompass these kinds of bumps in the road.
Love
Being a parent is truly a gift and an act of love. There are things we do for our children that we may have never imagined would be listed in our lifeโs portfolio. Jay shared with me an opportunity to not only be a mom but also be one of the voices inside of him that needed to be heard. I learned the many facets of love โ love the action verb and love the verb. LOVE was the glue that allowed me to stand in the middle of those complex situations, and love is what allowed me to maintain my sanity.ย ย
As I reflect, the learning that takes place from being a special needs parent is actually taught by the child.ย
Jay taught me all these things until the day he passed away this summer. While the wound is still open and fresh, I relish in his teachings and keep them within my studious position of being his other mom.ย
Ericka Polanco Webbย is a mom of six, a writer and host of the Sinking Heels of Motherhood podcast.ย
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