Our Journey as a Family

The Mother

I have always been an active person, ambitious about many life projects, and one of them, which I had nurtured since childhood, was to build a family. As I grew into adolescence and later became a woman, I started imagining myself with a family by my side. I did not count on the subjective meaning of the word "perfection." I became a mother at 21. At the time, I had the support of experienced women around me. This allowed me to deal with the insecurities of a young first-time mother. Over time, I discovered what my daughter and I needed. Tatiana was my first. Little by little, our relationship solidified, and in 1976, Mário, my second child, was born. This time, I already knew more about the secrets of motherhood, yet a new relationship was being established. In 1979, at 27 years old, I gave birth to my third daughter, Mariana. Just like my other pregnancies, I had no complications with Mariana’s. However, it was during this pregnancy that my sixth sense sharpened. It warned me that something, this time, could be different. Mariana was born through a normal and smooth delivery.

I remember that twenty days had passed when I received a phone call from my gynecologist, who was also my uncle. He asked me to come to his office with Rogério because there was something he needed to share with me. That was when I found out that Mariana was born with T21. I hadn’t noticed anything different when Mariana was born. She had slanted eyes, just like my second child. I hadn’t seen anything in her that could indicate anything unusual. At that moment, the ground opened beneath my feet. I felt an overwhelming shock, one I thought I would never recover from. I went back home, and I remember climbing the stairs and seeing Mariana’s room closed. I thought to myself: if I don’t go in now, I never will. That is, if I don’t walk through this door now, I won’t embrace my daughter and the challenges that lie ahead.

And I went in, filled with fear more than anything else. I held Mariana in my arms, and from that moment on, I set out in search of every type of therapy that existed. From that day forward, I never stopped. Not even for a minute. In the 1980s, very little had been published about Down syndrome. At that time, Mariana was part of the first generation of children to receive early stimulation. We went to speech therapy, physical therapy, occupational therapy, and worked with colors, scents, and other tools at home to stimulate her development. For preschool, Mariana attended a regular school called Externato Bem me Quer, where she stayed until she was five years old.

I can say that at 27 years old, when I became Mariana’s mother, I also developed an even keener awareness of the physical and psychological development of a child, becoming more actively involved in her achievements and challenges. Mariana and I became a team—my role was to create opportunities, and hers was to dive in and experience life through them.

At that time, parents of children with T21 came together as a large support group, strengthening each other through meetings and the knowledge gained from raising their children. In an era without the internet, whenever we heard of a new case, we would immediately reach out to those first-time parents to make sure they knew they were not alone. It was a time when the world still needed to recognize and validate the existence of these children.

Just as I did with my other two children, I made sure to be an active part of their development. But I knew I couldn’t do it alone. There is a lot of talk about “support networks” today—I believe what we were doing back then was very close to that, and it was what gave me strength. I understand that, at different stages of a child's life, this support network changes. In the early years, security, nourishment, affection, personal needs, and an environment that fosters physical and psychological development are what ensure their well-being. Naturally, the ones responsible for this are the parents, grandparents, uncles and aunts, siblings, and even household employees, who also become part of the family. As children grow, this network expands to include institutions such as schools, classmates, teachers, therapists, various extracurricular courses, friendships, and leisure activities. And when they become adults, this network grows even further, and for parents, new responsibilities emerge—one of which I like to call being a "safe harbor." That is, ensuring that they find their vocation, whether by choosing a college, encouraging travel experiences that contribute to their personal growth, or simply being there for whatever they may need. This kind of attentive listening allows us to better understand each child's individual journey. And that is how I balanced my time and learning with my three children—between my own personal needs and those of my family.

Sometimes, parents take on a central role in their child’s development. It is important that this role exists during the period of greatest vulnerability in a child’s life, even to ensure their safety and protection. I understand that, many times, we want to hold on to this responsibility forever because it gives us an even greater sense of purpose in life. But I am certain that what parents want most for their child is for them to find security within themselves so that each one can take charge of their own life. And with a child born with an intellectual disability, it is no different.

I constantly sought out new knowledge and didn’t want to stop in my pursuit of developing all of Mariana’s abilities. My discomfort began when I encountered a rigid system—where people, meaning therapists, professionals, and even parents, were the ones setting limits for the child instead of letting the child define them. It was as if they were the ones deciding how far another person could go.

The world relies on pre-established codes, and without them, we have no chance of being included. I felt that, in the eyes of therapists, there was an assumption that Mariana would always be treated as a perpetual child—completely invisible, without space for exchange, and certainly not seen as capable of discussing her own desires and needs. But I did not give in.

In 1994, we gathered a group actively involved in the cause, and at a congress in Buenos Aires, we wrote a letter of intent to create a Federation of Down Syndrome Associations in Brazil. The aim was to strengthen the associations and work together with all of them. I was part of it as a public relations officer for many years.

On a daily basis, I came into closer contact with professionals who worked with Mariana, who, like me, no longer wanted to do things 'again'. What we wanted was to build 'this new'. We had the energy and desire to work for the best, in the fight for people with Down syndrome (T21). In 1996, the Carpe Diem Association was born. A group of people who spared no effort, with a worldview aimed at breaking imposed paradigms. These limits often came from within, brought by professionals and family members.

Being at the center of discussions.

I intuitively realized that all of Mariana’s skill development was about equipping her for society’s demands, rather than the demands she created herself. As a daily exercise, practiced since her very first day of life, I learned to listen to her desires, her needs. And we grew together, watching those desires transform. Mariana has always existed based on her will, and when those were realized, they pointed to her self-esteem. Today, I am simply a witness to them.

It is important to understand who benefits from the inclusion of a person with intellectual disabilities. This was one of the key points where my discomfort resonated. How can we think about inclusion without listening to those directly affected? The principles that guided Carpe Diem were to shed light on the protagonism of these individuals, believing in each person’s right to their life project and to a society committed to diversity and accessibility for all.

At Carpe Diem, I found people who embraced the idea of placing individuals with Down syndrome at the center of the conversation. We sought to reflect, discuss, and change the understanding that what is important must come from others, and only then does it come into existence. We wanted to highlight autonomy and, more than that, to ensure that the needs of people with intellectual disabilities were heard. Deep down, we knew that one day we would cease to exist, because the association only existed due to the need for transformation. And it was 20 years that resulted in a legacy, impacting the lives of hundreds of people.

From this ideal, we motivated thinking minds, who, alongside me, dared to dream together. We spared no effort in designing and moving concepts that had been stagnant until then, offered to people with Down syndrome. Our goal was to achieve recognition of equal rights and access to them.

Another major project, and achievement, of Carpe was the launch of a bilingual Portuguese-English version of the book *"Mude seu Falar que eu mudo meu Ouvir"* at the UN when we were invited to participate in the first International Down Syndrome Day on March 21, 2012. It was a turning point. The book featured the literal transcription of speeches from young people who were prompted to discuss intellectual disabilities and accessibility conditions by themselves, with no grammatical corrections. We also included the name of each of these young people, who, like anyone else, have ambitions ranging from simple to complex.

What Carpe always advocated was to see the person before their disability, while the world often only sees the disability and forgets about the individual. But first, a child is born, and only then do they receive a diagnosis. What is often heard is... "He has this diagnosis, what am I going to do about it?" No, none of that! First, there is a person there, who needs to develop. Only later does the disability come.

Every parent believes in their child with a disability. They believe that their child won’t be a prisoner of the syndrome and that they will take actions that defy statistics. But what does that mean? I always said I believed in Mariana. A few years ago, I realized that I trust Mariana. There is a huge difference between believing and trusting. And I will tell you how I came to realize this.

One day, Mariana got lost in the subway and faced the worst scenario for any Paulistano: Estação da Luz at six in the evening. That's when I received a phone call from her saying she was lost. On the other end of the line, I took a deep breath and thought to myself: let’s look at the positive side, she took action, and that is exactly what I want from her, it’s what I’ve fought for these 45 years! So, I told her: go outside, take a taxi, and when you're in the taxi, call me. She listened carefully to my instructions, and when I finished, she told me that a young woman who was next to her wanted to speak with me. This young woman offered to take Mariana home. I thanked her so much for that but asked her to do one more thing for me: to put Mariana on the train line that would take her home. I wanted her to return by herself. This was part of the learning process. I also knew that she would arrive home very nervous. Even so, I stayed calm. I waited for her to walk through the door. When she did, I made the biggest celebration. I listed all her achievements and congratulated her for what she had managed to overcome. I hugged her and made a big fuss about her accomplishment. Then, I changed the subject, and she went to take a shower.

The next day, it was Mariana's weekly therapy day, and she always took the subway. I knew that when she woke up, she wouldn't want to take the subway because of the previous experience. Sure enough, she was scared. She asked me to go with her. But I insisted that she go alone, knowing that if she didn’t go this time, she would never go again. So, I said I would walk her to the subway door. And I did. I didn’t change my mind. She went. And it was then that I started trusting her. Because I know she can handle things. She had gotten lost before, and managed on her own. At that moment, I learned that believing was not enough. I actually trusted her.

Mariana has worked in several places. Many times, feeling bothered by the repetition of tasks and the lack of challenges, she would ask to leave and go to another job. In 2009, Mariana lived for nine months in João Pessoa, Rio Grande do Norte, because that was her life project at that moment. For this, a whole support network was built with her to make sure the experience worked out. She received therapeutic support, learned to use a credit card, and arranged with Lilian (one of the creators of the "Pipas no Ar - Working on the Sexuality of People with Disabilities" project) how they would divide the tasks and expenses in the house where they were going to live. There, she worked at an NGO, continued with her psychopedagogical activities, such as reading and writing, and I only visited her two months later. I received some criticism from other parents who asked me how I had the courage to do that. Well, if my other children had that opportunity, why wouldn’t Mariana?

When I asked her about her experience living in João Pessoa, she answered: "It was good, I had my adventures, it was fun. I took mototaxis, the ferry, it was nice." And what did you like the most, I asked. She replied: "The experience of living with other people. I worked with Lili, who was from an NGO, APOICHA. I supported the children and needed to help. I helped the mothers who have children with Down syndrome. I lived with Lili in her house, organized my things in the wardrobe, and helped with the housework. I went to the supermarket because I shared the expenses. It was very important for me to gain autonomy."

The phase I’m in now, with the challenges life has brought me, is aging. It’s well known that people with Down syndrome age prematurely. I look back and realize how important the life choices we made for Mariana, and those she made for herself, were. Being able to start early stimulation and having the opportunity to work on her autonomy, her protagonism, knowing how to make different choices, and constantly updating her current life project, have given Mariana greater flexibility for what’s ahead.

My efforts now focus on ensuring that, in this process of aging, Mariana experiences the least possible loss. To that end, we seek therapies that help her improve her performance. Today, she practices Muay Thai three times a week. She has been in psychotherapy with Nancy for 34 years. She attends a group for young people with Down syndrome, which is led by two wonderful people, and their role is to provide challenges for the group to accomplish. Each time, with a new challenge, always focused on autonomy. Mariana learned to take the subway with the group.

I believe that for there to be true inclusion, several steps are necessary. Society still needs to be sensitized so that it can be transformed. But we must not forget that the person with a disability is the true protagonist of this transformation. If they have their own voice, they showcase their skills and change society’s perspective. They are no longer a passive object, but an active subject. Thus, their protagonism is legitimate, even if they need support! And who doesn’t need support?

What I’ve seen throughout my journey with Mariana is that there comes a point where families give up. This cannot happen, after all the path we've traveled and all the achievements that have occurred. We can’t give up at the final stretch. After all, one day, we won’t be around. And who will be there for them?

My dream is that Mariana can exist beyond me. To know that her steps are taken with firmness and conviction by her own choice. That she doesn’t hesitate to seek help from her siblings and her father, and that she is the author of her own decisions.

For the world outside, I would like people to listen more to individuals with intellectual disabilities, to bring them closer and allow them to decide how they want to live. Each person is unique, and that is the great hidden treasure that each one holds within. That power of being one.

The Daughter My name is Mariana Amato, I am a 45-year-old woman, and I live with my parents in São Paulo.

I enjoy practicing Muay Thai, doing therapy, participating in the group of adults with autonomy, and doing Kumon.

Today, I go out with my friends and enjoy going to parties.

In my daily life, I sleep over at Marie's house; she was raised by my grandmother. I go out with her, we have lunch at the mall, and we also go to Karaoke and the cinema.

Every Tuesday and Thursday, I take the subway to my therapy. I leave home and walk to the Higienópolis-Mackenzie station, then I get off at the Paulista station, transfer to the Vila Prudente line. From there, I go to the Chácara Klabin station, take the Lilac Line, and get off at the Eucalipto station. I walk, pass in front of the Ibirapuera Mall, cross the street when the light is green. I also return home by subway.

I really like my independence because I manage on my own. I got lost once and asked a security guard for help, and I solved everything. I was a little worried, but it all worked out. My mom kept calling me and helped me find my way back. When I got home, I was nervous, but my mom calmed me down and said, "Mariana, you're amazing!" I felt better!

I love having independence because I can manage by myself.