“Not normal”: the first prejudice against Down syndrome is the time of diagnosis

Dolores Pisano Costa is the president and co-founder of the Civil Association Changing the Look. Her son Matias was turning 4 years old the day Infobae contacted her to find out what her day-to-day life was like as the mother of a child with Trisomy 21.

That was the first clarification Dolores wanted to make: not to say “Down syndrome” but to refer to the genetic characteristic that these people have. “Because syndrome refers to illness, and they are not sick,” the woman on the other end of the phone clarified.

Dolores had to break down - first - her own fears and prejudices when she learned, in September 2017, that the son who was on the way had a “high probability of having Down syndrome”. This was made known after nuchal translucency, the routine ultrasound that is done at week 12 of gestation.

After a consultation with a geneticist who ordered a complementary study, the confirmation was via telephone: “Hello Dolores, the result came back positive, Trisomy 21, or better known as Down syndrome,” she heard on the other side of the line, and the world fell apart.

He didn't know how he was going to do, what would become of his life, how he could take the situation forward. And, as is often the case under unexpected circumstances, she wondered why that had to happen to her.

With her coaching training, she was able to make use of the tools she had and make them her own to combat her own prejudices, and break down her fears to continue enjoying the pregnancy and welcoming her son into the world she deserved.

“At the time of childbirth everything was enlightened,” the woman recalled in dialogue with this medium, and then enumerated the achievements of her child at the age of four: “Matías began to walk a year and two months, even earlier than his older brother, Alfonso (7), left the diapers at three years and three months and nothing perfect.”

For the little one, who spends his room of four in the same school that his brother attends, “the difficulties are currently through language, although he is a super expressive and communicative child”.

“With Mati, and since we created Cambiando la gaze, I learned to look and focus on strengths and not weaknesses,” said Dolores, who emphasized: “These are people who need more support, but end up doing the same thing as their peers. In our case, speech is the big challenge, but there are a lot of other things that my son does and that's what I'm left with.”

- What do you think is missing in terms of breaking down the prejudices that exist around Down syndrome?

- One of the biggest is that all people with this condition are good, and they are not really little angels. They are like the rest of the mortals, sometimes they are in a bad mood, they get angry, they are human.

Another belief is that they will not be able to work or that they are not self-employed, and in the association we saw it in our own experience: there is a broadcaster, a journalist, a teacher gardener. Today it is known that they are people who manage independently, with accompaniment in some cases, but achieve an autonomous life.

In general, prejudices go in line with the fact that they are not going to be able to do a lot of things, when what happens is that it is those myths that annul them.

If we look at them we will see the person behind their slanted eyes that characterizes them so much, and we can see their abilities to enhance them.

The biggest challenges are in socialization, in achieving true open and inclusive schools so that education is adapted to each student, with modalities that are useful to each child, with their strengths and weaknesses.

As we said, unfortunately the news of having a child with Trisomy 21 continues to be communicated as a serious problem, something negative and even some give parents something like “condolences”. This is happening today, and the cause is mainly “because, in general, health professionals think of it as a pathology, a disease and they don't really know what the day-to-day life of a person with this condition is like, they focus on limitations rather than thinking about their abilities and what they will be able to do”, they consider since Changing the look.

“We believe that it is essential to become aware of the impact and importance of this first communication of the diagnosis,” Dolores emphasized. The way parents are approached will influence how they imagine the future with their children, and breaking down prejudice starts there.”

That is why the association, on the occasion of World Down Syndrome Day, launched the campaign “It's not normal”, paraphrasing a concept that is often used to define people with Trisomy 21 and with the aim of debating the idea of “normality” to go to the grassroots, at the beginning of the story of families who have a child with this condition and question the manner in which the diagnosis is made.

A survey conducted by the association of 616 families with children with Trisomy 21 under the age of ten, found that 55% of parents are not satisfied with how they received the news of the diagnosis. Twenty per cent of them were alone, without company and 77% did not receive any information or contact from the reference association to advise them on the matter.

“Many, like me, were informed by phone, others by email, or even in the middle of childbirth if it had not been detected in pregnancy,” said Dolores, for whom “sometimes there is little tact and empathy when communicating to parents.”

For her, there arises the chain of prejudices that then extend throughout the lives of these people. “The world changed, and just as other things are updated, it is time to know and realize that having a child with Down syndrome is exactly the same, with more challenges, in other times - or not - but if they go to standard schools, have a social life, are valued and respected they can achieve the same goals than any person in his life,” he concluded.

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