Tere Jiménez, mother of Santi, has written several blogs for CURE SYNGAP1:
- The Superpower of SYNGAP1 Siblings
- Making Decisions For My SYNGAP1 Son
- Vivir La Discapacidad (Living with a Disability)
- Un sueño para mi hijo SYNGAP1
- Back to school with our little Syngapians
- Wheel of Fortune
- Vacacionar con un SYNGAP1
- Notas de Terliz
Also, Café Syngap1 Episodio 06: Teresa Jimenez y Su Hijo Santiago Desde Mexico
(Editor’s note – this has been translated from its original Spanish version, “LO QUE SYNGAP1 NO NOS PUDO QUITAR.”)
We are intimately familiar with the daily challenges faced by our children, adolescents, and adults with SYNGAP1. We know about the structures that we, as parents and caregivers, build to provide them with a somewhat more stable life, preventing their behaviors from spiraling out of control, or at least trying to maintain control when things get difficult.
I have read about other parents who, sadly, began to stop leaving the house. Their children’s strength and anxieties became too difficult to manage outside of a safe environment. This started happening to us a few years ago. Although Santiago is a sociable child, there were times when he would cry, cover his ears, or simply refuse to enter a space.
Even after the pandemic, watching buses go by made him cry. He was terrified of them, just like he was of escalators and elevators. Since my son doesn’t communicate verbally, it’s been an immense challenge to understand what’s going through his mind. Now, he uses a specific sign to tell us when something scares him, so we can comfort him better; but, to be honest, I was terrified of the idea of not being able to travel with my children. It hurt me to think that I had to give up those family moments that we cherish so much. It was as if SYNGAP1 was gradually stealing away our shared dreams.
But I don’t give up so easily. Even though I noticed the uneasy glances from people in the shopping malls, we kept going. With anticipation and patience, he managed to ride the escalators. Once he understood how they worked, he liked them. Now he’s not scared anymore, and I told myself, “Well, at least SYNGAP1 didn’t take this away from me.”
However, elevators remained a barrier. On one occasion, in a hotel that only had emergency stairs, my husband had to carry Santi almost all the way up to the fourth floor. This hit me hard. I thought the day would come when we wouldn’t be able to do it anymore because of his size and weight; that those would be our last trips.
But one day, while we were waiting outside a store in front of an empty elevator, I seized the moment. I asked him to come closer, to explore it without pressure. When I asked him if he wanted to go up, he said yes with his finger. I was nervous; I was afraid that when the doors closed, he would have a meltdown and others would misunderstand the situation, but we took the risk. His sister went in first, then him—hesitant but brave—and finally me. When we reached our destination and got out, we applauded. Santiago looked truly proud. And, as you can imagine, I was the happiest woman in the world.
I was already making progress with the diagnosis, and I decided to go for more: the challenge of a bus trip, outside our comfort zone. We went with my husband’s family on a bus for 45 people. I told myself, “It’s time to break the stigma of disability and show the pure, unfiltered humanity of my son.”
Days before, we prepared the groundwork with pictograms on his tablet. I explained the trip to him, the road, and the places we would visit. On the big day, my husband practically had to force him onto the bus. As he sat down next to me, Santiago was trembling. I felt discouraged, fearing a meltdown, but I took out the tablet and reminded him how well he was doing. He clapped. At that moment, I understood that he also felt it as an achievement. I almost cried; sometimes we underestimate how much they understand about their own struggles.
The trip was a resounding success. Santiago behaved like a warrior for all three days. He enjoyed the scenery and saw beautiful places. The most touching thing was seeing how strangers, upon seeing us interact with him, overcame their fear and started talking to him naturally. One woman approached us to chat, and he ended up giving her a hug.
We returned without a single incident: no crises, no scratches, no accidents. Of course, the pace is different; we walk slowly, and group itineraries are a challenge, but everyone welcomed us with love. I felt blessed and grateful for life, because today I know that SYNGAP1 won’t take this away from us either. At least, not for now.
At the end of the day, I’ve learned that the diagnosis may dictate the pace of our steps, but not the destination of our journey. SYNGAP1 puts up walls, but the love and stubbornness of a family builds bridges. Seeing Santiago conquer his fears reminded me that the real disability is not in his genes, but in our lack of faith. Today we not only celebrate a successful trip, we celebrate the freedom to inhabit the world together, reminding ourselves that even though the path may be slower, the view is still wonderful.
