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the initation course in deafblindness

Mother and son, together on the way to hope

Awareness, hope, strength.

These are the words that Stela, the mother of a young man with deafblindness, uses to describe her experience meeting Sense International Romania (SIR).

Stela has three boys. Petre, the oldest son has deafblindness and he communicates only using sign language. After he was born, 26 years ago, she says she experienced fear and disappointment, being forced to fight a slow social system and a society unprepared to integrate children with disabilities. Since then, many things have changed in their life. She became braver and more aware, she found her voice and the power to change things.

“I was sitting there thinking: This is it, this is how things are, there isn’t anything more I can do. I was even afraid to hope to change things for the better, because if one is hopeful, they might be disappointed and feel they cannot handle disappointment again. It was then that SIR came, and something moved in my heart and mind. Those little inner mechanisms that fuel initiative and make you try to search for solutions and actually become aware of them. Sometimes solutions are very close but due to being so overwhelmed, we fail to see them”, remembers Stela, her smile filling the room with light and warmth.

In 2021 she first took Petre to a trip organized by Sense International Romania. He had already met the team when he was attending the Special Professional School for the hearing impaired “Sfanta Maria”, in Bucharest, as he was among the first students to participate and graduate the printing workshop course organised in another SIR project.

For his mother though, the 2021 trip to the mountains along with other young people with deafblindness and their parents, was the beginning of a profound change. She remembers the train ride, the three full days and above all the bond with the other parents. Two more workshops at the mountains followed.

“It meant a lot that we met children with similar stories to Petre’s. For us, mothers, these meetings helped us to unload and be able to talk openly about painful things. It is much easier to talk to someone who understands, who has experienced similar things. That allowed me to be more relaxed and enjoy more everything that happens there,” Stela says.

She gained confidence that she can do other things and started going out with Petre on her own. Now they regularly go out in the city with another young man with deafblindness from the group and his mother. During the last meeting, Stela noticed how Petre takes care of his friend, which surprised her. Usually, she was the one taking care of him.

“I think SIR has given him wings too. He seems much more self-assured now. In the beginning, he didn’t want to go out, didn’t want to go outside, he was more reserved. Now he can’t wait to go out and meet his friend and participate in the Zoom meetings,” Stela continues.

Since 2021, Petre has been a member of the permanent group of young people with deafblindness, which meets online every month to discuss various topics. Most recently, they talked about money: what money represents, what we do with it, and how we organize our budget.

“He was very happy after the meeting. He came and told me many things, what they discussed, what he does with his money. Before, he didn’t do this, he was more closed and didn’t want to talk. Now he’s very happy to tell me stories or listen to me. And maybe soon he will go shopping” Stela adds.

“I understood that I needed to adapt to him”

What brings her the most joy is the fact that they now communicate better and have more patience with each other. She believes that the initiation course in deafblindness she attended in the spring of 2023, with a scholarship offered by Sense International Romania, alongside another mother and 32 teachers, contributed a lot to this. Every Monday evening, for 7 weeks, she connected to the online sessions, and sometimes shared her and Petre’s experiences. Some things she learned during the training course made her reflect, while others were like a bandage over the tougher experiences from Petre’s childhood.

“I remember when a trainer spoke about the mourning period that parents go through at the beginning, as parents of a child with disabilities, and I understood then that we had felt that too,” Stela recalls.

She also understood that she needed to adapt more to Petre, to give him the opportunity to express himself.

“That worked very well because before I didn’t always have patience. I was hasty, drawing my own conclusions. And Petre agreed, he couldn’t contradict me. After the course, I was more attentive to him, and I saw that he wanted and could say more, but I didn’t give him that chance,” says Stela.

After doing her lessons in the course, as she puts it, she changed her attitude towards him and began to notice changes in Petre. He became more willing to help her understand what he wants to say when she doesn’t get it right away. Now she feels that she knows him better, discovering that he can do much more than she believed.

“It seems like you know your child after so many years… But the reality is that you can always discover something more. With SIR’s help, I felt the need to dig deeper into his soul, to see what he wants, and to understand him more. My point of view was limited; I couldn’t see him as I see him today: very pleasant, very communicative,” Stela emphasizes.

In addition to all this, she learned something valuable during the course: to offer herself understanding and to be gentler with herself.

“I understood that I am human too and that everyone has their own pace and power to do things. I learned to be more tolerant, to accept more easily what I cannot do, and to have more patience with him and myself.”

“Everyone needs tolerance and understanding”

With these realizations, she has become more confident and feels that she has spread her wings in several areas. Now she is aware of her opinion and expresses it whenever necessary, whether it is in a doctor’s office or in discussions with others. And so, step by step, person by person, giving positive examples and talking about empathy and inclusion, she feels that she has changed several people around her.

“I notice that some people I have spoken to are more empathetic, more open. We are all humans, and the reality is that no matter how whole you may seem, even if your ears and eyes function well, there is still something within you that needs tolerance and understanding from others. Long-term education and patience are needed. And perhaps in this way, person by person, we will manage to calm our fears and become more tolerant towards people with disabilities,” she adds.

For young people like her son, Stela wishes for them to be able to integrate into society, to be useful, and to feel safe. And for other parents in similar situations, she wants to offer them support and confidence, just as she herself has received: “Never lose hope, keep your eyes wide open, and squeeze that drop of water from the stone. When you think you can’t go on, know that you can still go a little further!”

Story written by Cristina Botezatu