Acceptance and the Future
Acceptance does not come all at once, even for parents. It always takes time. This time is long or short depending on the personality, history and social and family environment of each of the parents, but also on the manner in which the child deals with his illness (the severity of intellectual disabilities, the presence or not of increased handicaps), and depending on the child’s own personality and the energy he has to deal with his difficulties.
During certain stages of life (of the child or parent), it is useful and necessary to get a specialist’s help. The physician can reassure you and point you to other specialists, if appropriate. The psychologist, through listening and advice, will allow you to talk, step back and, often, tone down the situation. He will help you to take stock of your child’s situation, by naming his difficulties and, most importantly, the strengths on which he can draw to recover and progress. Don’t let worry or guilt take over. Dare to ask for help from competent people.
Life expectancy for persons with Down syndrome is not at all that of the preceding generation. At the same time, their quality of life is significantly improved thanks to the combined efforts of professionals, parents and associations.
But much remains to be done; this includes consolidating and coordinating everything being done all over the world, as well as starting new initiatives. This is difficult and means leaving the beaten path, being imaginative and unafraid to innovate and believe. This first generation of aging adults has been dealing with its handicap for years with amazing courage. We cannot let them down!
One can start preparing for old age at any time. It must be thought of as early as in the infant’s education. It is the business of all – parents, grandparents, brothers and sisters, professionals, friends – to allow him throughout his life:
To be loved by others, because one day you will no longer be with him
To have friends, real friends, alter egos, handicapped as he is, because he will be called to live and work with them
To be happy outside the physical presence of his parents because he will be called to leave home. Like everyone else! From infancy, mothers must not fear leaving him with friends or a holiday centre for a few days. That they do accept, in advance, to not always be his only source of happiness – perhaps that is true maternal love!
To be proud of himself, to respect himself while being aware of his difficulties – through respecting his own human dignity, which will accompany him throughout childhood and adolescence
To soar because he has become an adult even though he remains your child! Leaving home is often difficult for him and his parents, and must be prepared well in advance. The family must talk about it as something natural and normal – going to visit the hostel, beginning with short visits and then, if all goes well, organizing longer stays.
For them, as for everyone, old age makes it hard to break away from the routine, to move or change a way of life. These changes, foreseeable and expected, when senior or late in life must be prepared well in advance through discussions in the family, together with associations and professionals. This preparatory work should lessen your worry and that of your child, and allow you to live your daily life more calmly.