If we could go back and write a new story with our children, we would choose the same one. [Photo Courtesy of the South American Division]

General Conference

The look of our boy

Learn the story of a mother who went from mourning to fighting for her son on the spectrum

Brazil | Keiny Goulart

As we embark on this new journey called parenthood, we realize that the final destination will always be the complete surrender of an unconditional love, so awaited. I remember the days just after the pregnancy test confirmed that my daughter Myah would have a little brother. After the initial shock, we had the honor of choosing his name and his first clothes, the family vibrating with the arrival of the little brother. Everyone said how wonderful and perfect it would be.

This long-awaited moment brought mixed feelings and a real story. Not that it could be unreal, but, until then, it seemed real only to other people. This time it was for us.

Then the big day arrived. We placed our suitcase in the car and our next stop was the hospital, where my son was born. At this point, anxiety is no longer on the scene, because in my arms was the reason for so much waiting. As one of God's greatest miracles, the baby had arrived, opening its eyes, needing so much care and dedication. 

Soon it becomes an immense package of love. The first smiles are enough to change the freshness of the air and the wonderful smell of baby spreads through the rooms of the house.

The lessons in the Bible are already replaced by the inspirational messages of father Abraham, mothers Sara and Ana. The stories of David, Samuel, and Esther are resumed daily through family worship. After a privileged period of breastfeeding, the introduction of food begins. Sleep is regularized. And then, your baby sits, crawls, and walks. How beautiful those little legs are going towards us. 

Then comes the long-awaited time to hear a loud, “Mom and Dad.” Oops! Wait a minute: I haven't gotten to that part yet! Some years have passed and we still haven't heard those beautiful words. We only have one look.

Derek, our boy, was born looking different. When breastfeeding, he rarely looked at me. When we called his name, he infrequently reacted or turned around; he always kept his eyes down. There were rare times when we saw him in pain, even with his knee all scratched.

At eighteen months, he was already aligning stones in groups of four and reorganizing the messy colored pencils inside the box to look as if we had just bought it. My little experience in parenting had me thinking, it must be because he is a boy. However, more signs appeared every day.

I realized that when he was among many children, he preferred to be alone. I liked music a lot, but when the sound ended, my boy reacted with screams and kicks. On several occasions, I had to leave the church service because of his behavior, which was seen by many as tantrum and lack of education. 

The investigation was long and included a pediatrician, speech therapist, occupational therapist, neuropsychologist and psychopedagogue. When our boy was about to turn three, we opened the door to a neuropediatrician's office as an ordinary family and closed it with a role that changed our lives. It was a report which included ICD 10 - F84 TEA: Autism Spectrum Disorder.

I remember that day as though it was this morning .I left the office and, at the reception on the fifth floor, sat on the floor and cried a lot. I was trying to understand the future of my role as mother. Until then, my focus was to idealize a “perfect” child, but now what to do? How to move on? I had to swallow the pain and act.

I feel that God was always with me and knew that I would need someone flesh and blood to help me. Thanks to him, I had my husband and I usually say that he is my heart beating outside of me. With the help of him and other professionals, I immersed myself in long psychological therapies, many studies into the night in readings, always trying to understand a little more of this new universe into which we had been thrust. I understood that I needed to go back, and I needed to fight. It was time for the mourning to end.

It was a Sunday afternoon, after an event at the children's school, when my daughter gave me a gift. It was a trophy, with a photo of Derek, who was looking down - a common feature in people with autism. With shaking hands and eyes full of tears, I understood that my mission as a mother, as simple as it may seem, is to fight to one day have a new trophy with my son looking at the photo.

I have a child who asks for what he needs and knows how to value what he has. A child who taught me that, in the midst of my yearnings, life is much simpler than we make it. That we don't need much more than to have a good laugh. I have a child who taught me that amidst his rigid routines and different way of thinking, he would expand our minds and limited vision to understand life is much simpler than we imagine. I have a child who will always have a sincere smile and a grateful heart for the smallest things. And, even when he is not fully aware of the danger, he will turn his eyes on us, sure to find in our arms the protection he needs.

It was then that I realized the need to help other families who, like us, are looking for something or someone to support them. The idea arose to create a support network for Adventist families who have family members on the spectrum. My husband, pastor Marlon Bruno Oliveira, was responsible for the idea of ​​the name RAAFA, which in Hebrew means “cure” and the acronym, in Portuguese, means Adventist Family Support Network.

The project started in early April 2020, with sixteen parents and autism professionals. We started to welcome families via Whatsapp in groups divided by regions of the country, so that we could support families more closely. We held our First International Webinar, bringing together 12 speakers, with 5,000 subscribers from more than 38,000 people reached via the internet. With this number, we started to contribute more than 300 families for the groups, in a virtual way.

In the last edition of the event, in December 2020, already with the full support of Adventist Possibility Ministries, we produced a webinar with 16 professionals, including specialists in the area and adult autistics sharing their experiences. This time, the event had 60,000 people watching live, reaching about 240,000 people during the event.

Currently our network is present in five countries and serves more than 500 families through WhatsApp groups. This is only possible thanks to the more than 50 fathers, mothers, and professionals responsible for moderating and interacting daily with their groups that are divided into specific topics such as nutrition, Sabbath school, explorers, adventurers, and language. All of this is offered free of charge to families, aiming at the love, support, and welcome of each one.

I like to say that I went from mourning to fighting for my son. We did not choose to be the parents of a special child, but we have become such and accept this gift, understanding that this is one of God's greatest gifts to us as long as we live on this earth. And honestly, if today we could go back and write a new story with our children, we would choose the same one! For us, there is nothing on this earth that represents the celestial gaze more than the eyes of our boy.

We believe that Jesus will return and we will receive our restored son from him. Prepare your heart for that day! For now, happy April 2nd, World Autism Awareness Day.

This article was originally published on the South American Division’s Portuguese news site.