Their kids’s disability has proven them a brand new path; Ecuadorian mother and father share their experiences – The Mix
Parents of children with disabilities have learned four lessons. Because of this, they recommend being aware of the signs that allow early diagnosis to seek specialists and information about treatments. Also, seek advice on how to know your rights and speak to other parents who share their experiences.
“I lived an odyssey until a neurologist discovered that my twins Moisés and Damián, 3, were born with spastic cerebral palsy,” says Catherine Viera. She had prenatal exams and after giving birth they told her that she was born perfectly healthy.
But this mother saw red flags that pediatricians downplayed. For example, when he was getting changed, he noticed that their bodies were hard like dolls; They didn’t crawl, they didn’t turn around. Because of this, she and her husband did not settle down until the time of diagnosis, when they were 1 year and 9 months old.
Janeth Dávalos is a child physiotherapist at the Fundación San Juan in Quito and specializes in the treatment of cerebral palsy. There the Changoluiza twins attend two physical therapies per week, one professional and one language.
Dávalos advises parents to analyze risk factors during regular check-ups, to look out for infections or high blood pressure in the mother and premature births, which can lead to brain damage.
And look at the baby’s psychomotor development, the area of language and behavior, not just motor.
Alexandra Legña and her husband Francisco Endara, 37 and 40 respectively, learned a lot about Down syndrome, with which their second son Isaac was born at the age of 1 year and 8 months. The oldest is Zoé, 5 years old.
To these parents, their son’s condition came as a surprise; They didn’t notice anything during the controls.
With the result of the karyotype examination, they were confronted with moments of “shock” and pain. With the support of family members, they founded the Fundación Reina therapy center in Quito, which focuses on the specialized treatment of children with Down syndrome. Isaac was conceived from the age of three weeks.
When the therapies started, Alexandra not only had the experience of going to work and raising her son, but she was also able to meet other mothers. “As I listened to their experiences and saw their little ones achieve goals, I felt stronger. I understood that Down syndrome was not that much of a problem and that my husband and I were not alone. “
December 3rd was International Day of People with Disabilities. And the parents we consulted agree that their children’s education in the country is still complicated.
Xavier Torres is chairman of the National Council on Equal Disabilities (Conadis). He asks parents to find out about the guarantees of the Disability Act, which has been in force since 2012, and to use the informative measures.
Alexandra, a civil servant, suggests using the regulations to bring her children to therapy during the working day.
Torres confirms that the parents have two hours a day to do this; Also doubles the length of maternity leave in the case of severe disabilities.
Ana Lucía Pilalumbo is the mother of 14-year-old Joel Umaginga, who uses a wheelchair. The most important thing is to guarantee him access to education. He is one of 33 students with the municipality of Calderón
2,109 people. From the age of 5 he learned to write with his foot, he does not have the strength in his hands to hold pens. When the class was face to face, I paid for school transportation. They don’t have any resources, they get the $ 50 bonus.
do not forget
Technical aids such as wheelchairs, hearing aids and the like must give salud.
Public and private institutions must accept disabled children and receive special support.
Parents benefit from a reduction in the consumption of services such as electricity, landlines and cell phones.
Universities must give 10% of the scholarships to priority groups like this population.
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