The Superpower of SYNGAP1 Siblings

Tere Jiménez, mother of Santi, has written several blogs for SRF:

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, “El super poder de los hermanos SYNGAP1.”)

After several talks and psychological therapies, one of my biggest concerns is how much my son’s disability affects his sister. I’ve always been somewhat concerned about the time I dedicate to Santi, because of therapies, 24-hour care, and attention. I compare it to how much I dedicate to my daughter.

Sofia is now 13 years old and has been through a lot for her age. She has accompanied us to hospitals and doctor’s appointments. She has seen her brother through the most difficult times, and although she doesn’t say much about it, I know it’s also somewhat difficult for her to see him like this and see all the attention he receives.

The constant questions for me are: How much can she be involved? Am I doing her wrong by asking her to check on him while I’m doing household chores? The answers I have are varied. I have discussed this in therapy and with my mother, and I believe that what they tell me can help many of us let go of the guilt and frustration that plagues us.

I mean, the siblings of our SYNGAP1 children have a superpower. Experiencing their siblings’ condition daily from early childhood makes them aware of human diversity. They empathize at school with classmates with disabilities or conditions. From a young age, SYNGAP1 siblings learn about medications and the names of medical specialists, recognize types of therapies, and participate in many of them.

In our case, Sofi has developed an ability to regulate her brother. She recognizes when he’s on the verge of an emotional breakdown and changes his mindset by playing or doing something he enjoys.

She’s been my partner, and I’ve had to talk to her now that she’s much more aware of what we’re experiencing at home. I’ve asked her to communicate with us about her thoughts on being a SYNGAP1 family. I also allow her to listen to me about what I’m working on in therapy, and she knows she can ask for help whenever she needs it. But the most surprising thing is that she feels normal. She’s lived it almost her entire life, and acceptance has been a beautiful process for her. She’s never been ashamed of her brother; she talks to her friends about him and invites them over. Within those invitations, she also tries to involve her brother at certain times. Sofia can proudly hold hands with him on the street. They’ve established a very beautiful connection.

I vividly remember that when she was between 8 and 9 years old, a Down syndrome diagnosis reached our family while the baby was still in my sister-in-law’s womb. It shook us all. I started to cry because I knew what my brother and sister-in-law would face having a daughter with a disability. Sofi saw me sad, and I explained what was happening, that it was very likely her cousin would need extra help like her brother. Her response is etched in my heart. She said, “Mommy, don’t worry, we already know what to do. We’ll help them.” Even writing this brings tears to my eyes, because our children’s mission may not be to provide 100% care to those with disabilities, but they do have a tireless capacity for help, solidarity, the most beautiful heart, and the will to normalize what we feel is beyond our parameters.

For me, it’s not about burdening her with the work for her brother; she has her space to be herself. She goes with friends to walk in the plaza. We have a special day a week for her and me; we call it Girls’ Wednesday. We go shopping, get ice cream, or just ride in the truck to talk. I love that she trusts me and is open about many topics that we sometimes think are complicated or taboo.

We’ve also had difficult moments, because it’s also okay to not feel well sometimes, and I respect that space. Talking about it with love and understanding has been key to getting along.

She gets involved because it’s part of her life, but not because it’s a life that revolves around SYNGAP1. Sofia is Santi’s sister, but she’s our daughter first. We respect her space and individuality; she can express herself and be who she is without judgment. We include her as much as she feels comfortable in the family situations. She loves and cares for her brother with respect and patience.

The greatest superpower my daughter has is acceptance and love, not only for her brother, but for life itself. And SYNGAP1 gave us that gift.

Terliz