Tere Jiménez, mother of Santi, has written several blogs for SRF:
- Vivir La Discapacidad
- Un sueño para mi hijo SYNGAP1
- Regreso a Clases con Nuestros Pequeños Syngapians
- Rueda de la Fortuna
- 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, Tomar decisiones para mi hijo SYNGAP1.)
Many times I have doubted if the decisions I have made for my son have been the right ones. There are times when I think I am terribly wrong. Sometimes I even feel that I should have quit my job to dedicate myself 100% to him. But I also realized that the decisions have been analyzed and at the time made with all the love we have for him and the hope that it will be better for him. There is a decision that continually knocks me down, with this I mean that many times I think I am very wrong, but most of the time I feel happy.
This is about my son’s school stage. When the time came for him to enter first grade, he was not yet diagnosed with SYNGAP1. He had very noticeable general developmental delay but even so, we included him in a regular school. (That’s what public schools that serve all children with or without disabilities are called in Mexico.) We chose it thinking that they had USAER who are the support unit for teachers who have students with some disability or condition.
It was very hard at first, then he improved a little and then again there were flare-ups in his behavior that seemed to send us all backwards. The decision to reduce his time at school in the day was made because it was difficult to attend to him and his other classmates. I accepted it because I am also a teacher at another school. I know how difficult it is, since in Mexico we do not have a support teacher in the classroom. In short, they want a single teacher to do magic with more than 30 students in a classroom and teach with 30 learning styles, children with disabilities, and much more, which if I told you the heavy load we carry, you would never want to be a teacher here.
It was then that I decided that Santi would attend the 2 planned hours. Some school years he had an aide and others he didn’t. I regretted it every time something bad happened. I was very frustrated not to see academic progress, but his stay at that school also brought me very good surprises. The first was my ability to deal with complaints (hard for us SYNGAP1 parents because much of his behavior is difficult to control). Another surprise was entering school every day and seeing children from other groups passing by to greet Santiago or even approaching to shake his hand. I also found teachers willing to learn with Santiago, who asked questions with respect and made the adjustments he needed.
I saw that Santiago began to be more sociable, his interactions with his classmates were not always the most harmonious (because Santi has his character); even so, a sensitivity was created in the group that I am sure that if my son were not there, those little ones would not know perhaps how to include a child like him.
The decisions that we parents make are not always the best, I think I should have done a little more in the academic part, perhaps more therapy, stimulation or whatever. I also think that sometimes I gave up, but later I learned that I was in a burnout stage while having to deal with my son’s situation as well as with my work.
I have learned that the decisions that one makes may be different for others, but at the end of the day, no one knows what we experience with our children 24 hours a day. They may judge us for making certain decisions, for taking them to a special education school or for taking them to a regular school, they will judge whether you should have medicated them in one way or perhaps in another. What I am sure of is that if at the time of making a decision it is accompanied by progress, good experiences, even with all the work that it implies, it is a good decision. And if on the contrary I have made a decision that does not favor my son or sets him back very noticeably, it is time to distance myself or change strategy.
Santi is about to finish his primary education and we are still seriously analyzing the next decision for his school education, now with a little more experience, but thinking much more about the well-being of our SYNGAP1 teenager.
I want to tell you: Believe in yourself, in what your heart tells you and what you think is best for your child. Keep an open mind, allow yourself to take stock and make changes when you think it is necessary. If you get tired, take a break, get therapy and go at your own pace. Get informed and look for options from specialists. If you throw in the towel from time to time it’s okay; just pick it up again, shake off the sand and keep going.
Terliz.
