Alexandra is a 23 years old young woman with deafblindness.
She was born prematurely at 7 months, and that's when her fightbegan.
"They placed her in my arms and told me: your child will not hear, will not walk, will not speak, will have paralysis either in one hand or on one leg. I was scared! Then I told myself that my daughter has to be strong. I brought her home and put her on the bed; I was even afraid to lift her up. It was very difficult in the beginning!", her mother recalls.
Later on, her mother noticed that the baby didn't make many sounds, so she decided to take her for a thorough examination. This was followed by many therapies and treatments.
"It was very difficult in the beginning, until she grew a bit, but we got through it. Little by little, day by day. With check-ups, visits, massage, physiotherapy, injections, and she kept progressing", her mother adds.
At the age of 4, Alexandra said "mom" for the first time, and at 6,she took her first steps. Little by little, Alexandra became more independent, and now she communicates verbally.
Alexandra learned about Sense International Romania (SIR) when she was a pupil, at school. She was curious to know more and joined the group of young people with deafblindness that the organization works with. "I was very curious to see how things work there. I spent days with friends who have deafblindness, and it was very interesting", she remembers.
She participated in several trips organized by SIR and has fond memories from the mountains or from the seaside, where she rode the cable car and met other young people with deafblindness, just like her, from various cities in the country.
"The group helps me to be more open, and communicate better," Alexandra says.
Her mother was also happy when she found out what deafblindness exactly meant and that she could meet other children and parents going through similar situations.
"I was happy when I learned about deafblindness; I realized that there are other children like her. I wanted to meet them; I thought maybe they would become friends with my child! I wanted to share with them what I had learned and to have the opportunity to communicate with them", Alexandra's mother emphasizes.
It has been a long journey for the two of them, mother and daughter, and it continues with new challenges. For the past few months, Alexandra has been working full-time at the same factory as her mother. Working eight hours a day in three different shifts is tiring for her, but she enjoys it and is proud that she can do it. She now wants to save money for driving school and, if possible, even have a car.
Her mother would like to encourage other parents with similar stories: "They should start somewhere, even if it's difficult! We have to move forward, leave the difficulties behind a bit for them! We can't leave them behind! You can be anyone, you deserve to be helped!"
Story written by Cristina Botezatu
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Mădălina is a 24 year old young woman who is studying clinical psychology.
She has been a fighter from the first day of her life. Doctors didn't give her many chances when she was born, and even now they are sometimes amazed when they see her medical history.
Mădălina has deafblindness; she wears a hearing aid and glasses, but for a long time, she considered herself a person with a hearing impairment.
"I have had a visual impairment since birth, and at the age of 6, after a treatment, my mother discovered that I also have a hearing loss, which was confirmed by many doctors. For a long time, I considered myself a person with a hearing impairment until Mr. Vasile Adamescu, a person with deafblindness, published a book that I really wanted to read."
According to her, learning the term "deafblindness" represented an opportunity.
"I understood myself better when I found out that I have both impairments and the subsequent decision to leave the school for the deaf and go to college. The simple curiosity about deafblindness has brought me many beautiful things!", Mădălina recalls.
She met Mr. Adamescu at an event organized by the Sense International Romania (SIR) and she remembers that moment as a major event that greatly contributed to her story.
"He managed to overturn things in my mind and soul. I thought that if he succeeded, I could too! He was an inspiration and proof that even if you can't see or hear, you can do much more; you are beyond what disability implies. There is also a principle in psychopedagogy that says disability is something you have, but society imposes the handicap on you. I think that's what it was; he transformed my handicap into a disability", adds the young woman.
She believes that her encounter with SIR and Mr. Adamescu came as an answer to the questions she had.
"His story was the answer that came after many, many years! It matters a lot what you plant in your garden, what seeds you sow, because at some point, they will sprout, even if it takes a long time for these seeds to grow", says Mădălina.
In the 8 years since she started attending SIR activities, she has planted many seeds: first as a participant, then as a volunteer, and now as part of the team.
The job offer came at a time when she felt disoriented. After graduating from college, she took a year off to think about what she wanted to do next, but looking back, she believes that break helped her get to know herself better.
"The offer was like a message telling me: Don't worry, things will happen as they should! I think these moments of disorientation are necessary in life because they help us find our way back, the path we need, actually. And that's how it was with SIR, in the end," emphasizes Mădălina.
One of the things she is currently practicing in SIR projects is patience, along with many other things that contribute to the person she is today.
"I think everything has come together, all the things I have learned. The fact that I stayed, that there was collaboration between SIR and my school, the fact that I was invited to be part of projects. I have met many people here over time, people I highly admire. Everything comes with challenges and teaches me things."
At SIR, Mădălina coordinates the group of young people with deafblindness, alongside another colleague who has the same disability. She interprets in sign language whenever necessary, and she tells new people about deafblindness and their rights. She strongly advocates for people with disabilities to know their rights because there were situations where she or other persons were treated unfairly. Now she helps others discover their rights and is delighted every time she can help.
Mădălina says she has faced many difficulties and has fought for inclusive education because she strongly believes in the power of education. She has learned not to give up easily when something doesn't work out at first and to keep moving forward, being careful about who she allows into her garden.
For the future, she wants to have her own psychotherapy practice, where she can support those in need and conduct research on the topic of disability.
What can you do, according to Mădălina, despite having a disability? "You can dream, laugh, be positive, and move forward because you've already been backward!"
Story written by Cristina Botezatu
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"My name is Crina, I am 39 years old and I am from Cluj, a city in Western Romania". Crina smiles and shows us the sign she has chosen for her name: her freckles.
Crina communicates only through signs, she was born deaf and wears glasses. She grew up in a united family, with both parents being deaf, brothers and sisters who can hear and another sister like her, with deafblindness.
For a long time, she didn’t consider herself a person with deafblindness, only deaf. She learned the secrets of tailoring in highschool, then worked in a tailor shop for 9 years. After that, she took on another job in a supermarket, where she arranged merchandise on shelves, all experiences from which she learned a lot.
Her mother, Elena, told her about deafblindness for the first time.
“In 2006-2007, my mother went to Finland, where she had a friend. She attended activities with a group of people with deafblindness. She liked it there and discovered new things. When she returned home to Romania, she wanted to find out more about deafblindness and learned about the Sense International Romania. She was impressed", Crina recalls.
Her mother became a volunteer for SIR, getting involved in many activities and representing the parents of children with deafblindness. A curious nature, Crina accompanied her to meetings, met new people, and gained a better understanding of what deafblindness meant.
"That's how I discovered that I am also a person with deafblindness, and that's ok," says Crina smiling.
Her mother taught her sign language, and this way they were able to communicate very well.
"She was very interested in being close to people. We used to communicate both hand on hand and through signs. Even though she didn’t see well, she always said it was possible. I felt a very important connection with her through communication. Even when it was dark, we could communicate”, adds the young woman.
From her mother, she inherited a passion for communication, as well as gentleness and patience, which she now applies in her activities with young people and children with deafblindness in SIR's projects.
In the spring of 2022, Crina accepted the opportunity to join the foundation's team and continue her mother's work, who is no longer with us. "It was wonderful to meet new people, to feel connected, to feel love. I accepted to work at SIR not necessarily for myself but for those around me", says Crina.
She now coordinates the group of young people with deafblindness, together with another colleague who is also deafblind. She keeps in touch with the members of the group, facilitates the online meetings and explains through signs for those who don’t communicate verbally.
She also attended several trips with the group of young people with deafblindness. Initially, she felt uncomfortable speaking in front of them, but now she likes to share her experiences with the others.
"It’s good to not hide but to show what it means to be a person with deafblindness, what one can do, what talents we have, the fact that we are equal to other people, that we can do various activities. I hope the foundation will develop in the future", says Crina.
During activities with the young people with deafblindness in the group, she noticed that some individuals understand more easily, while for others it’s more difficult. In time she learned to adapt to each individual.
"If someone is new, I tell them that deafblindness is a hearing and vision impairment: poor vision, poor hearing. Some are deaf, wear hearing aids, wear glasses; there are several categories of deafblindness, I give them examples. Some people don't accept it; they only feel deaf, and you can't force them. I have patience and explain," summarizes Crina the way she talks about deafblindness.
Among all the activities she has participated in, she particularly enjoys face-to-face meetings, where people communicate and smile more.
"They inspire each other with light, trust their friends, and influence each other. In light, there must also be understanding and gentleness", says Crina, recalling the gentleness she learned from her mother, who still guides her.
For the future, she desires more activities and better communication.
As a person with deafblindness, Crina feels she can do whatever she wants. She enjoys traveling, discovering new cultures, and trying food from different cuisines. She can travel by train or airplane, and does her research before embarking on a new adventure: she searches for the itinerary on her phone, gathers information about the hotel where she will stay, reads comments and reviews from other travelers. This summer, she will go on a trip to Greece with her father and younger sister, together with a large group of deaf people.
In the future, she dreams of more distant destinations, such as Africa or Asia, but until then, she believes there are still things to be done within the group of young people with deafblindness.
"I want to continue working, to develop projects as part of the team. I don't want to think that it's enough as it is, NO! We go all the way... even though I don't know where this end is!"
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.
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.”
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