Several caregivers of school-aged children with disabilities share this Friday, in an online conference in Santa Maria da Feira, the experiences of a confinement “even more anxious and tiring” than the general, indicated this Thursday. psychologist.
The initiative is promoted by that municipality in the district of Aveiro, and already has about 70 participants registered in the ‘webinar’, including parents, teachers, health professionals and other technicians active in the area.
“The two confinements caused by Covid-19 were difficult for everyone, but for this particular group they presented additional challenges, either because the risk of infection in children with disabilities is greater and creates much more anxiety in caregivers, or because most of support structures closed or reduced their offer, which overloaded parents and educators, making them even more tired “, explained to Lusa Mara Alves, the municipal psychologist who has been working with the disability community.
To make matters worse, “these caregivers also stopped taking time off, becoming overwhelmed, saturated, with no time to rest”.
Mara Alves recognizes that, in the second confinement, schools “began to provide some support” to these families after “better oiling what did not go well in the first” and also points out social responses that Câmara da Feira developed to help these caregivers , such as the creation of a psychological support line for the educational community and a platform for clarifying doubts about current distance learning tools.
However, society lacks “awakening to the reality of these families”, especially so that caregivers can feel comfortable enough to request help when necessary.
“Roughly speaking, the Portuguese people do not have a culture of asking for help and there is still a lot of stigma about talking about the difficulties that these people face. That is why caregivers feel uncomfortable in addressing their problems, in assuming that they need to. of help, in admitting that they need to rest “, notes Mara Alves.
This is not the case for Elvira Baptista, who, being the mother of two 13-year-old twins, one of whom has cerebral palsy that affects her mobility, is used to exposing her difficulties more openly, as president of the Federation of Associations of Parents of the Municipality of Santa Maria da Feira.
“I have always talked about these issues, but I know that there are many people who do not succeed because they are more reserved and do not want to expose themselves. I became involved in the Federation because of that: to bring these issues up for discussion and to awaken the educational community to a reality that is still poorly known “, he reveals.
Elvira Baptista assumes that “the first confinement was more exhausting because they closed the physiotherapy, the pools” and other therapeutic activities that her daughter Leonor needed, but says that the second period of isolation at home remains very restrictive for children with disabilities.
“Leonor can go to the pool now, but she still doesn’t have a massage therapist, for example, and she is so tired of being closed that, even though she knew she should use the stroller to exercise her muscles, it’s a sacrifice to get her to do something”, tells the mother.
Spending most of her time in a wheelchair, the young student “is saturated, misses her friends”, has moments of bad mood and is discouraged.
The mother assures that she can only balance everything because she works at her husband’s company and this gives her freedom of hours.
“I can take care of Leonor when I have to and then I work until 1 am to dispatch work. If I worked for someone else, it was impossible! I would have left my job so my daughter wouldn’t be alone and I don’t know how we were going to survive. , meeting the expense of therapies “, he confesses.
This ‘webinar’ foresees not only the sharing of experiences of caregivers of children with disabilities at school age, but also strategies to deal with everyday difficulties and to value achievements, says Lusa, in a statement.
One of these mechanisms, recommends Mara Alves, is to create a list of challenges to be overcome daily.
“The idea is to define a series of tasks for which the caregiver should be rewarded, given the difficulty that it is to perform them in the specific context of his life. It can be just: Today I deserve a bowl because I was able to put the soup on the table on time. It doesn’t seem like much, but it certainly demanded a lot from him “, he concludes.