- This period of confinement is particularly complex for families with children affected by the handicap.
- Because parents must, when they can, take the place of the various health professionals who usually surround their children.
- Without rehabilitation, both motor and cerebral, these children risk accumulating deformations and regressing. This is why we must think about support on a case by case basis, ensure associations and caregivers.
Stay at home to save your life and that of others. But at what cost ? Many parents of disabled children are alarmed to see the dramatic consequences on their children if this coronavirus crisis and this confinement continue… Which rhyme with a lack of care.
Because as the weeks without re-education multiply, the delays, deformations, even regressions of their children risk piling up. This is why some parents and caregivers want to alert: if the confinement continues, children with disabilities and their families may pay a heavy price.
Suffering children
We knew the daily life of carers was extremely complex before the crisis. But the closing of schools, health centers, the impossibility for the health professionals who gravitate around these children to continue their work have seriously affected the life of these families. Difficult to generalize since each child has their own difficulties. Some will especially need motor rehabilitation, others visual, intellectual stimulation, a lot of care, or all of this at the same time. But the Echo survey conducted on April 6 on 1,500 families of disabled children (all combined) reveals that the priority concern of these families, at 71%, is not school, but the re-education of their offspring.
“Usually, these children have a rehabilitation follow-up coordinated by doctors, made by occupational therapists, psychotherapists, physiotherapists, specifies Sylvain Brochard, professor of physical medicine and pediatric rehabilitation. We make these children more able to speak, to walk, to write according to their motor disorder. Confinement represents a complete cut off from the continuity of care. "
Filipina, 5 and a half years old, suffers from right hemiplegia, motor handicap, and amputation of the right visual field since birth after cerebral palsy. Each week, in normal times, she sees her physiotherapist, her speech therapist, a psycho-educational worker and her occupational therapist. Since mid-March, it is Christèle, her mother, who must take care of all these stimuli.
"I was very afraid that my daughter would lose bone and motor skills," said Christèle, mother of the disabled Filipina.
Because for these children, two months without rehabilitation can be catastrophic. "I was very afraid that my daughter would lose bone and motor skills," explains Christèle. For children who have had cerebral palsy, it is essential to move to fight against bone deformities that would require surgery. A concern shared by many parents who try to make their children dance, jump, walk.
Parents in distress
You also have to manage the other children, household chores ... "The first ten days were a nightmare," admits Christèle. And again, we are not very representative. I have invested a lot in the rehabilitation of Filipina, so we have the necessary skills, space and equipment. In the context of confinement, we are able to temporarily replace professionals. This does not take away from the mental load! "
Many working parents, who do not know how health professionals support their children, who are afraid of doing wrong and doing wrong, feel completely lost. And alone. Sonia already suffers from scoliosis and immense fatigue. She raises alone Liam, 10 years old, polyhandicaped. Who usually spends four days a week in an Institute of Motor Education (IEM), not to mention a home help who comes to help him wash, eat, go out every day ... So Sonia, since mid-March , compensates as best it can. And multiplies the caps: mom, nurse, caregiver, cook, rehabilitation, home help ...
“I am trying to make a small program so that it does not lose what we have been working on for ten years. I don't have time for anything, I don't have dad to take over. I would like us to take a little more care of caregivers. We are also caregivers! "Sonia is afraid of not keeping up with this rhythm over the long term ..." Caregivers risk arriving at a breakdown in mental health ", warns Sylvain Brochard. "We use our resources to take care of our children," says Christèle. The confinement added a burden to already exhausted caregivers. "
What help?
How to relieve these parents? Some parents' associations and foundations quickly proposed support groups and tutorials to teach them how to move their children with delicacy (Cerebral Palsy Foundation, Handiactif France, Association Léa…)
Occupational therapists can offer sessions remotely, physiotherapists also, since last Saturday. Even just one session per week, "it's very helpful," says Sylvain Brochard, president of the French-speaking society for studies and research on disabilities (Sferhe). Finding a listening ear, a guidance, learning to make a few gestures, reinstating a rhythm, it is already a big step. It also prevents parents from being the "bad guys" in all areas. "
But that does not solve everything. "In some cases, these therapists have children, so they are not available," remembers Christèle. Then the screen is very complicated in terms of concentration for the child, it forces the parent to be there, to invest, to manage the frustration, the lack of motivation. We stopped the videotherapy occupational therapy sessions because it excited Philippine. As for bringing the carers in person, without the necessary protections, it is very risky. "SOS doctor came a week ago, without mask and without glove," regrets Christèle.
Find our file
What worries these parents even more is the prolongation of this parenthesis. This is why many of them jumped during Emmanuel Macron's speech on Monday April 13… Announcing that deconfinement would wait for the most vulnerable. "We can clearly see the legitimate tropism in looking at the elderly," admits Sylvain Brochard. But the fate of disabled children must be a real collective concern. In fact, irreparable consequences could further amputate the future of these future citizens. "From May 11, it is necessary to resume treatment with a risk assessment on a case by case basis, insists the doctor. We see an indirect effect of confinement on children who have a motor handicap, in particular for the most severe cases. "
Society
Olivier Véran promises "500,000 masks per day to the medico-social sector"
Health
"May 11 is a perspective that brings back hope and the unknown"
- Health
- Covid 19
- Coronavirus
- Parents
- Child
- Society
- Handicap
- Sickness