During prenatal care for two of her four pregnancies, Lidiane Jacomini was told that her children would be born with disabilities. Since their birth, doctors said that parents soon give up on caring for children with deafblindness and multiple disabilities. Lidiane confronted the negative opinions and decided she would be different.
What motivates me and what makes me happy is that I still dream.Lidiane Jacomini
During prenatal care on my third pregnancy with twins, I was informed that one of the babies would be born with a malformation. Within seven days of birth, one of the babies died. Over time, Micaella, the one who survived, was diagnosed with total congenital deafblindness.
At one of the first appointments, a doctor soon insisted that parents of children with deafblindness grow tired and give up on the care of their child. It was the moment when I said that this would not be my history and that I would not accept giving up.
For me, if Micaella hadn’t died, it was because she wanted to live, so I would have to give her the best possible living conditions. I came across the story of Hellen Keller and a Brazilian deafblind woman named Janine, which made me think that there is life after deafblindness providing the right support. I enrolled my daughter Micaella in a specialized school called ADEFAV, of which I am also one of the administrators today.
Later, during the pandemic, Lucas was born with visual impairments; some diagnoses are still under investigation. The news was a shock to me. At this point, I thought I was already mentally and emotionally prepared, but I realized I was not.
Lucas was my second child with disabilities. Today things are easier as Lucas has been surpassing all expectations. He is an active child with the most beautiful smile. His presence encourages me to move forward, believing that it is possible to advocate for the education and autonomy of children with disabilities.
I initially learned during Micaella’s journey that I want her to be in a place where she is welcome. However, people will only understand the needs of children with multiple disabilities and deafblindness through inclusion by opening the doors and accepting Micaella. She has the right to be in a classroom, whether a regular or special education one. I insist on regular education because awareness about disabilities will emerge when people interact with Micaella.
I also have two older children, Breno, aged 14, and Arthur, aged 9. Two wonderful boys who support my husband and me greatly. Sometimes I feel guilty for trying to divide my attention between all of them since Lucas and Micaella’s schedules are very demanding, in addition to all the emotional and financial concerns. Still, my role as a mother is to be strong and provide security. When I feel guilty, I remember that I am doing my best and assure myself everything will be ok.
Through an invitation from one of Perkins’ consultants in Brazil, I was invited to be part of a Perkins Strategic Working Group to discuss topics in this area, particularly on public policy. Later, I was invited to attend Perkins International Academy (PIA). I accepted because I wanted to understand more about applying calendars and communication systems. After completing the 3 PIA courses and fostering this relationship, I was invited to become Perkins’ family coordinator for Brazil in 2022.
Prior to the invitation, I had created two pages on social media. One talked about deafblindness and visual impairments, and another one was targeted at mothers. I started this work because I felt the need for spaces for people to talk without being judged, talk about feeling exhausted, or lacking the right information. Now I will be the Perkins family coordinator for the states of Tocantins, Amapá, Paraná, São Paulo, and Rio de Janeiro. My idea is for families to feel embraced. Every place has its challenges and its specificities. What matters is how we will solve them. I believe that my role here is to bring solutions. I want to show families that their children are not only defined by disability. I am very grateful because I work with what I love and on what I believe in. I think we don’t have to live feeling sorry for ourselves. Our children are alive, they have wishes, even if they are in different ways.
When I think about working with families, I believe it is about opening possibilities, about me being able to bring a perspective that life did not end and that we need to move forward looking for the best.”Lidiane Jacomini
First, there are the differences within the regions in Brazil, including cultural and infrastructure aspects. In addition, the issue of underdiagnoses. I also think there are a lot of debates between families and professionals. We need to stop blaming people and search for solutions.
For example, Micaella is not enrolled in a regular school because today, I have certain standards. I can’t place her in a regular school if there are no professionals that know how to work with her communication needs. And we can’t only train the teachers. I need a whole school community that can receive and embrace her. I need an inclusive society.
I can’t define myself for myself. I can only explain myself as part of a community. So for me, it’s about my children feeling good. I like listening to them, watching movies and here at home we really like to eat together.
What motivates me is that I still dream. I dream that my son Breno will be able to study in Canada and that Arthur will open his pet shop. I dream that one day I will have my house on the beach and see Micaella playing in the sand while I take my morning walk.
What motivates me and what makes me happy is that I still dream.
This interview was translated and condensed for clarity.