Explaining what Down syndrome consists of helps society remember the inherent dignity and valuable contribution that these people can make if they are treated from birth with normality, respect, affection and, above all, with great stimulation so that they give the best of themselves. This Tuesday, March 21, World Down Syndrome Day is celebrated, as decided by the UN for the first time in December 2011, a day marked on the calendar with which it is intended to highlight the importance of people with Trisomy 21 ( as it is also known) have autonomy; Be independent and have the freedom to make your own decisions.
Down syndrome is a condition that was first described in the mid-1860s by Dr. Langdon Down in England, but it took almost 100 years for it to be known why it occurred. Those born with this syndrome have a genetic condition caused by an error in the process that replicates and divides pairs of chromosomes, leading them to have an extra copy of all or part of chromosome 21 from one parent. Hence its other nomenclatures, Trisomy 21. With the current data, science and research have concluded that this extra chromosome causes some problems in brain development, which can lead to the alteration of intellectual development as well as some of the typical characteristics facial features we see in these people. But it is also known that although there are common elements among people with Down syndrome, there is great diversity between them.
Paloma Anca (A Coruña, 37 years old) is an author and a friend of Bosco’s mother, a seven-year-old boy with Down syndrome, and has just published Bosco, a life in your gazeto (Tutor, 2023). “I have tried to immerse the reader in Bosco’s story, a true story full of anecdotes and visibility. It’s very special. Through his testimony, with a sincere and realistic story, I narrate the day to day of a life that I want to discover to the reader. I talk about coexistence, demystification and the immense love of a child, with Down syndrome, ”he summarizes about his new book.
In conversations for El País, Tita, Bosco’s mother and the protagonist of this story is the mother of two more children, Álvaro, 5, and Jaime, 2, recognizes that they are a special family, but, above all, very normal and real: “In the book I reflect the reality of Down syndrome, without making up, a reality that we should all know, denying and removing prejudices from many of the aspects associated with this disability,” he adds. She firmly believes that thanks to information and knowledge, the vision and perception of this disability is being changed. In addition, Tita, along with other mothers with children with disabilities, opened an account on Instagram, called @bosco_star (it already has more than 10,000 followers), in which they talk about their day to day, and it was thanks to this social network that received an offer to write his story: “I was encouraged by everything that entails, but I had to give a voice, and if it was in my power, I would.” And that’s how she, with the help of Paloma Anca, gave body to this book.
In its pages, he openly explains everything that Down syndrome entails: “On the one hand, the fears, obstacles and uncertainties that we have faced and, on the other, also the progress, overcoming and many smiles”. For this mother, her story is addressed to all those who have contact with people with this syndrome; fathers, mothers, relatives, friends and professionals. “At the same time, it is also focused on all those people who are not familiar with the syndrome. For these, in my opinion, it will open their eyes and break with many of the pre-established prejudices in society, ”she adds.
The challenge has been hard, according to what he narrates, because he had to live up to his son: “To say that he is a happy boy, that he makes life easy for you. And that he teaches you that if you work at things and don’t give up, you will achieve everything you set your mind to”. “It is true that concerns are always latent. The main one is the fear of when we are missing, but that is a bumper car that we have parked and we will take it out later ”, the mother is sincere. “Now we live day by day with him, we accompany him and try to give him everything in our power so that he has the best quality of life and autonomy,” she explains.
Bosco is enrolled in a Special Education school. As Anca explains, the center has a specialized faculty with multidisciplinary teaching, where, in addition to the course tasks, there is an educational team with speech therapy, physiotherapy, social counselors, and even water therapy: “We are We are delighted with his development, he is in the first year of Primary, and he loves to do his homework when he comes home from school”.
Bosco has a great level of independence precisely thanks to this school: “Based on repetitions, spending time, teaching them, many, like my son, achieve their goals. Let us not forget that above all they are people”. “Bosco bathes by himself”, she continues proudly, “I help him get dressed, but like I do with my other two children. He is also in charge of setting the breakfasts, and prepares the table with all kinds of details. And he does not forget anything necessary.
With all this, his mother wants more talk about what people with Down syndrome can achieve: “And if we see that they have more dependence on something, let’s help them achieve the degree of autonomy they need to do it alone.”
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