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Caring at Home for Those with Extra Needs Index CARING AT HOME FOR THOSE WITH EXTRA NEEDS INDEX INTRODUCTION Ángela de Miguel, Home Renaissance Foundation 04 CARING AND GIVING, PERFECT BLEND Happiness with two children with Down’s Syndrome 06 by Mariana de Ugarte Home, the place to care, share, tolerate and respect 08 by Baroness Hollins Celebrating the joy of life 10 by Rut Muñiz Ignacio´s miracle 12 by Horacio Joffre Galibert Together we take care 15 by Adriana Espina SPECIAL HOMES: SPECIAL CARE Whilst we walk the walk 19 by Miguel Ángel Sánchez de la Nieta Children are such true examples of adaptability 21 by Annick Lievens Pablo, 16 years old, Ullrich congenital muscular dystrophy 23 Sarah, 11 years old, Cerebral Palsy 25 My father has Down´s Syndrome 24 by Sader Issa 2 CARING AT HOME FOR THOSE WITH EXTRA NEEDS INDEX CARING FROM A PROFESSIONAL PERSPECTIVE Care and the home environment 27 by Víctor Rodríguez Great babies, incredible families 29 by Belén Concejero TAKING CARE BY GIVING VISIBILITY A YouTube channel to promote deaf awareness 33 by Kara Gillespie Art is an act of love 34 by Stefano Cipani What do I do? I am in the business of making planes 36 by Roberto Guerra Álvarez IF I WERE A MINISTER FOR A DAY ... The same rights as any other citizen 39 by Irene Sánchez Let´s educate in values and love our particularity 41 by Monica Reading EPILOGUE by Lucy Hawking, Stephen Hawking Foundation 44 3 CARING AT HOME FOR THOSE WITH EXTRA NEEDS ÁNGELA DE MIGUEL INTRODUCTION How often we complain about how unfair stories visible we also want to gain the ear life is when we really have no reason and are of our politicians and legislators. To share unable to appreciate what we have. How- the message of the value of all in our socie- ever small the difficulties, they can seem ty and how the care of the home is the vital very big to us and that makes it hard for us factor in meeting all our needs. to feel grateful. One of the most obvious Like everything in life, even the most things to feel thankful for is our health. painful or difficult, there is a good side and Without a doubt, 2020 gave us a set- we are going to make it shine in this report. back that made us consider this aspect. For However, we are going to show the effort, months, the important thing was to stay suffering, work, pain, acceptance and ad- home and take precautions or we ran the aptation, loneliness and helplessness that risk of dying or killing others. But to those all these homes might experience at some who are born with some kind of disability, time. But once again, as we always do at for those who depend on others to live, for Home Renaissance Foundation, we are go- those who due to an accident were sud- ing to swich on the light and put the val- denly in a body that was not their own, ue on what is truly important, in this case, the pandemic offered no choices, and the these PEOPLE CARING. home became more important than ever. Mariana, Jaime, Sarah, Pablo, Roberto, We want to dedicate this new 2021 Sader, Ignacio, Kara, Irene, Fernando, Ben- Communication project to all those homes jamin, Monica, Miguel Ángel are the pro- where people live with disabilities. We tagonists of this Communication Report. have entered these homes to learn about You will find magnificent testimonies from the difficulties that the people who inhab- seven different countries, United Kingdom, it them experience every day. We want to Spain, Italy, Belgium, Syria, New Zealand honour all those family members who give and Argentina. Hopefully, by reading this so much of themselves so that their chil- report our eyes can be properly opened dren, their parents or their grandparents to the rich contribution those with extra live with dignity. We want to engage with needs and great hearts make to our lives professionals working in this field on how and homes and our society. to deal with such a situation. And of course, by making the reality of these homes and 4 CARING AT HOME FOR THOSE WITH EXTRA NEEDS CARING AND GIVING, PERFECT BLEND HAPPINESS WITH TWO CHILDREN WITH DOWN’S SYNDROME by Mariana de Ugarte 6 CARING AT HOME FOR THOSE WITH EXTRA NEEDS MARIANA DE UGARTE It is easy to overlook the benefits I would say that to overcome that of your life training. But the gift of a fear there are key factors: good education from parents and 1. How the diagnosis is transmit- teachers, as well as discernment in ted to you. We had two very different what you choose to retain and use experiences. In Mariana’s case, the to your advantage, is key to how well sensitivity and kindness of her paedi- you respond when faced with unex- atrician when she told us about her pected and difficult situations. suspicions about Down’s Syndrome, It was after the delivery of my first made it possible for us to assimilate daughter that I realised that everything the news with greater peace of mind. that I had lived through until then, all 2. The support network of asso- the people who had accompanied ciations and foundations. They are of me during my life, had given me what great help in emotionally difficult mo- I needed to mature and receive my ments, but especially important for daughter, despite the initial fear after the correct stimulation of the child in being made aware of her condition. helping their development. My name is Mariana. I am 33 years 3. The accompaniment of other old and our two children have Down’s families who have gone through the Syndrome. same thing as you. Seeing happiness Surprisingly enough, both times we in their lives, knowing that it can be a learned that our children had Trisomy reflection of yours, helps enormous- 21 after birth, and both times we were ly to learn to value what you have at extremely fortunate that our children home. Mariana and Jaime were born with And far from falling into naivety, good health and with no associated we are perfectly aware that the extra disease (something that often hap- chromosome that our children have pens). means more work, effort and dedica- Obviously, the reaction was not the tion, so that their development and same - the fear we felt when Mariana learning is the best possible. We also was born did not manifest itself when know that visits to doctors and hos- Jaime was born, since during the two pitals are and will be more frequent years of our first daughter’s life, we than in most homes, and yet I would had learned that having Down’s Syn- not change a hair on my children’s drome was not something bad, but heads, I would not remove that ex- quite the opposite. Therefore, I always tra chromosome as they would no say that fear of the unknown must be longer be them. overcome, because this is where true happiness can be found. 7 CARING AT HOME FOR THOSE WITH EXTRA NEEDS HOME, THE PLACE TO CARE, SHARE, TOLERATE AND RESPECT by Baroness Hollins 8 CARING AT HOME FOR THOSE WITH EXTRA NEEDS BARONESS HOLLINS We all need our home to be a safe place, stand a person’s experience from my a place where we can be ourselves and son. I learnt the importance of watch- where ‘who we are’ is accepted un- ing and wondering during what some- conditionally. How we grow and de- times seemed the 24/7 attention he velop will be shaped by our closeness demanded, alongside the competing to our ‘attachment figures’- usually our demands of other core and extended parents - and to our life experiences family members. And whilst my son’s during our developing years. Children care and dependency will last a life- with insecure attachments, who feel time, other’s needs and contributions rejected, who have one or more ad- are constantly changing. verse childhood experiences, are likely My son’s presence in our family has to have much worse mental and phys- enriched our lives both at home and in ical health and poorer educational at- the wider world. tainments. This applies even more so to disabled children. My husband and I coauthored a book (2005) in which we shared some of what we had learnt as parents of our autistic son with intellectual disabilities (ID), and some of the wisdom of 6 oth- er families who also had children with ID. Home is where family members learn to care and to share, to be toler- ant, and to respect home as a place of safety. But home is not always a safe References: place, and children and young people with ID will have particular difficulties Hollins, S. and Hollins, M. (2005) in communicating their risks and fears. You and your child: making Throughout most of history, people sense of learning disabilities. with ID have not been considered to London: Karnac Books have inner, private worlds. In 1989 I published my first non-lan- Hollins, S. and Sireling, L. (1989 - guage dependent story (When Dad 3rd edition 2004) Died) to challenge this myth and show When Dad Died. that even people without speech had London: Books Beyond Words, the same need for emotional under- www.booksbeyondwords.co.uk. standing and expression. I learnt the power of pictures to unlock and under- 9 CARING AT HOME FOR THOSE WITH EXTRA NEEDS CELEBRATING THE JOY OF LIFE by Rut Muñiz 10 CARING AT HOME FOR THOSE WITH EXTRA NEEDS RUT MUÑIZ That summer changed our lives rad- knowing how to express yourself ically when you arrived at our home.
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