If “home” is fundamental to the happiness of human beings, it is even more vital to the wellbeing of those who live with disabilities. The Covid pandemic, with its lockdowns, masks and distancing rules has, in the experience of many families and individuals, underscored this fact like nothing else.
Annick Lievens, an educator specialising in residential accommodation at the Royal Reception Institute for children with motor disabilities in Brussels, found herself last year taking care of 36 young people 24 hours a day.
When they could not return to their families, the boarding school became their home, and she was faced with the “impossible task” of providing emotional care for these children, with all their varying needs, while conforming to social distancing.
“So, within the limits set,” she says, “we do what we can and very often it is the children themselves who find the right balance and tell us: ‘Oh yes, the virus!’ They are resourceful and show true adaptability.”
Annick is one of a dozen or so people who have contributed to an inspirational collection, Caring at Home for Those with Extra Needs (pdf). It is the latest publication of the London-based Home Renaissance Foundation in a series about care in the home – and what a line-up of champions it presents!
The brief sketches come from seven countries around the world, opening windows into homes where people live generous and fulfilling lives with a young person (in most instances) who has a disability. Several of the latter have autism or Down syndrome.
Other pieces involve a child adopted from an orphanage, a man with multiple sclerosis who is a professor at a university, a father who has Down’s, and two families affected by deafness. There are also professional perspectives.
The stories feature struggle and at least hint at pain, but even where they show deficiencies in institutional support, the tone is positive and speaks of affection and joy.
Young people themselves speak up. Eleven-year-old Adriana Espina is upbeat about life with her younger brother Fer, who is autistic, and other siblings. Kara Gillespie, 15, was born deaf and now has her own YouTube channel. She is also on the autism spectrum.
Autism stands out among the narratives because of the extraordinary demands it makes on the family. Víctor Rodriguez, a psychologist and speech therapist, comments on the need not only for family care but also the caregivers’ need for training to main the “health of the [home] environment”.
Lucy Hawking, daughter of the late Stephen Hawking, has contributed an epilogue in which we read that she has a son aged 24 with autism. As a young adult she was a carer for her father as his health declined due to motor neurone disease, and today she is active in autism support and research.
Thirty-eight years ago, when Ignacio Galibert was born into an Argentinian family, there was no support system. Diagnosed at five months with “a profound developmental disorder of autistic type,” he became the focus of his parents’ and brothers’ lives as they passed from mourning to acceptance of Ignacio’s condition.
“The financial difficulties of coping with this complex disability grew daily,” writes his father, Horacio. “The National Health System did not cover specialized care of this nature and there was no financial support or grants for such needs.”
As he grew and became stronger, Ignacio went through a stage of hurting himself, banging his head against walls, doors and tables, gashing his forehead or cutting his scalp.
“But the family did not lose heart, and every night we gathered all the boys to pray together to receive renewed strength and to face the new day.”
Turning to recreation, they discovered that Ignacio responded well to sports, art and music, “and this became a healing therapy for the entire family and our group of friends.”
Horacio continues: “Years have passed and every member of this household is now engaged in some way in enhancing the well-being of people with autism, either as carers, teachers or simply by showing affection. Our home life was the motivator for the course taken in their lives and their life projects.”
With other families the Galiberts created a movement, and in 1994 founded the Argentine Association of Parents of People with Autism (APAdeA), which has been able to attract professional and public support. Ignacio, now 38, lives in the San Ignacio Community, a home-respite centre that is run by Augusto, the fourth of his eight siblings.
“We support places where they can develop in the most independent and autonomous way possible, with socialization and inclusion to achieve the human right to happiness,” says Horacio.
His account is headed, “Ignacio’s Miracle”. By this he means that his third son “has his own way of being and living in this world … no better nor worse than ours.
“At times we have felt anger, at others’ impotence, sadness or uneasiness. But at the same time, being with Ignacio has taught us to exercise patience, to acquire strength, to discover that we can be courageous.
“Whenever we saw him smile, we learned to accept it as a gift from God, and to find in each gesture a sign of hope that has helped us to continue always going forward.
“The miracle of Ignacio, finally, takes place also in the hearts of people who put effort, desire, and love to achieve it.”
And where is else is such a combination of qualities nurtured but in the home?
Anyone who is caring for a family member with “extra needs” will find encouragement in these short stories and accompanying portraits, while the rest of us can grow in awareness of the support we owe to these champions of loving care.
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Author: Carolyn Moynihan
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