Our Autism Story : Founder Andrea Fenise & Jasiel

A mother’s intuition is extraordinarily strong. From the moment, Jasiel made his grand entrance into the world, I felt something wasn’t right. Instead of crying because I was overjoyed that he was here, I cried because I knew something just want right with my baby. He didn’t cry. He didn’t make any reflex movements. He just laid there. I began advocating for him at only 4 minutes being in the world. Because that is what mama’s do. I asked the nurses to take him up to check his hearing and anything else that would be wrong with him. Twenty minutes later, they brought my sweet boy back to me laid him in my arms and said “Mom, he’s fine. He’ll just be a chill little guy.

After months of loving and nurturing him, a chill little guy began to show signs of what I prayed against-autism. My intuition told me that day, my son had autism. And at 18 months, a black woman pediatrician both confirmed to me and consoled me. But she did say, Mom please don’t cry. I know I can’t make you stop but please know that some of the most brilliant and smart people we know have autism.

She confirmed to me that all of the signs that I put off as normal boy toddler behavior were not necessarily normal. The rotation of his hands obsessively in circles. Spinning in circles that I thought were funny because he was trying to make himself dizzy, were stimulating sensations that children with autism do to console themselves. Not pointing! I didn’t even realize that at 18 months he should have been pointing. But most of all, the fact that I was worried about why he hadn’t said one single word yet was enough to evaluate him for autism.

There was a process to evaluate him clinically for autism. I noticed the signs very early on and immediately sought help and support. I reached out to a bilingual speech therapist who also is a licensed behavioral therapist that performed his initial M-Chat-R , which is a 20 question screener at 16 to 30 months old that indicates whether your child needs further evaluation. Jasiel scored high risk for evaluation but not necessarily an indicator of where he was on the “spectrum”.

After ruling out any hearing issues that was affecting his communication, we began with speech and developmental therapy first. It has been quite an emotional roller coaster for me. Indeed a process I will say. On one end of the spectrum, I see how brilliant of a mind Jasiel has. His ability to sing all of the words he hears from cartoons in Spanish is amazing yet he can’t say that he wants juego (juice) or say Mama. Witnessing him build skyscapers out of wooden blocks meticulously is a testament to the genius way that children with autism think. But he doesn’t point to the blocks to let me know he wants them in the first place.

I am sharing all of this with you for several reasons.

One being, first and foremost, to sort of come out of hiding and guilt around my son having autism. There is nothing I did wrong. I spent many days crying and feeling guilt wondering if vaccinating him was the wrong choice, was my age a contributing factor, and so much more. Jasiel is perfect. Why? Because God gave him a gift and he was made by him. His name means that really. Jasiel means “Whom God Made”. I am in no way, absolutely no way, ashamed of him.

Two, I remember the countless numbers of second opinions I kept seeking. After each one, I got on YouTube or Google looking for answers and resources. Sometimes, I found mothers or babies who looked like us. Sometimes, not! Sometimes I found resources for bilingualism and autism. More times not. I have always believed and will hold on to this belief that my purpose is to illuminate a path for those who follow me through my life stories. As I feel inclined, I will share all of the learning resources, tools, toys, workshops, books, people, whatever, to help make my journey easier and yours as well.

Our story of engaging with autism will be one that I remember for a lifetime. I am unbelievably hopeful that years from now you will all remember my boy as he stands on a platform changing the world through his actions and his words and autism will have only been a small factor to his story. You’ll remember the countless posts and resources I share to help you or someone you know navigate through living and engaging autism.

And, you will be so proud that you witnessed this brilliant little boy overcome all obstacles that autism presented to him.