My first thought after declaring alarm was for my disabled daughter. He is five years old and has Down syndrome, in addition to other visual and hearing difficulties. She is a very vulnerable girl.
But, in addition to fearing for her health, I was worried from the beginning what would happen with her therapies, with her routines, with everything that makes her improve every day and not be left behind.
We have been without a school for more than two months and I am still worried. Because for any child with a disability, these specialized treatments are the opportunity to continue advancing. And its lack, a possible setback with serious consequences.
The horizon is very uncertain and, in the best of cases, children with disabilities would return to classrooms in September, like the rest of the schoolchildren. Half a year without school is too long for any child, but six months without a specialized job for one with special needs can be a drama.
I’m not just talking about learning to acquire new skills. I am also talking about those children who need physical therapy to avoid adopting inappropriate postures. I’m talking about those who need sensory integration, like those with autism spectrum disorder. I speak of those who require a speech therapist to communicate or not to choke dangerously while eating. What will happen to all of them after six months blank?
In our case, the teachers of the Special Education school that our daughter attends have been in permanent contact from the first moment. They have provided us with work materials, explanatory videos, activities, support and advice. But, despite everyone’s great effort, I feel that my daughter is losing valuable months in her development.
Because when we do the weekly video call with her tutor and her classmates, she immediately imitates every gesture of her friends. If one paints, she also asks us for a page. If one teaches a flute, she looks for her drum. Social relationships, friendships, daily routines are the best experiences to promote growth. And all this has been interrupted.
Now we are the parents who have to start it up, but alone, trying to replace the good work of professionals and the lack of other children who stimulate it at school. And that while we work or telecommute, we take care of the rest of the children and we do the housework. It is not easy, and for many families it is almost unapproachable due to the child’s characteristics.
For 63% of parents of children with disabilities, this situation caused by the coronavirus will mean a setback in the inclusion of their children. This is reflected in the recent Family and Disability Report of the Adecco Foundation. However, 11% believe that the pandemic will not have an impact on them. And also 25% for whom there will be positive social changes that will favor minors with disabilities. Empathy and understanding would be between them. But it is hard to think like this when so many families were rebuked from the balconies for a simple therapeutic walk.
In a burst of optimism, I would like to be among the 11% of those who consider that confinement will have no effect on their children with disabilities. Neither for good nor for bad. That everything can be recovered after that more than half a year of absence.
Now more than ever I have seen the vital importance of daily specialized work with children with disabilities. The important thing is that each child receives the attention he deserves in the most suitable school for him.
Because so that the inclusion of our children is not a right on paper but a reality, they need adequate training that includes the academic, the social and the emotional.
I trust that after these months, the magnificent professionals who accompany my daughter on her way can resume everything as in a continuous line.
Our children know what it is to fight since they were born. And this will be one of those challenges that life faces every day.
* Terry Gragera is a journalist and mother of three children, one of them with a disability.
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