In general, raising a child means seeking to make him an autonomous adult. When a child has limits imposed by his illness, one must give him the greatest autonomy possible, without losing sight of his difference. Being autonomous does not mean doing things alone, because we live in a society; rather, it means being capable of initiative and having the freedom to decide, while complying with rules.
Autonomy is first and foremost a mental attitude that the parents must give to their child, while respecting his rhythms, taste, sense of pride, capacities and the realities of life in society. You must teach your child to accept his difference, give him occasions to be proud of himself, teach him to be pleasant in society, while preparing him to be separated from you when the time comes. But the education he gets from his parents is not all. Despite their families investing themselves just as much, some children will become adults less autonomous than others.
Learning small things in daily life will allow these children to slowly gain their autonomy. It is also about learning right behaviour, such as staying in a group, knowing how to do things, or opening a locked door.
You may be afraid of your child having a certain amount of autonomy, since he does not have an awareness of danger. He may have a tendency to run off, i.e. to leave the group without permission and without warning. These events create a great deal of concern, and cause reticence on the part of others to take responsibility for children seen as runaways. Nevertheless, they are not really “running away” in the usual sense of the term; your child is not trying to leave you. Rather, it is more often question of experimentation or curiosity, even disobedience when the temptation is too strong.
You must take into consideration the difference between the child’s physiological age and his developmental age or maturity. You must so inform your child’s caretaker. Your child may leave for an exploration, unaware of the risk he is taking: he is simply flitting from one experience to another. He does not have the maturity to understand the danger. Of a concrete frame of mind, he will have difficulty with the abstract. For example, your child understands quickly that falling from a bicycle or chair hurts, but will have more difficulty in following that a car moving nearby can be dangerous.
You will have to be twice as perseverant in driving home instructions, clearly and firmly. You must teach them to keep their seatbelt fastened in the car, to hold a hand crossing the street, not to follow strangers, to pay attention to cars. Children’s books can help in getting your child to understand the idea of danger.
Driving licences, whether automobile or motorcycle, are not worth considering. Even if his usual behaviour is very reasonable, a person with Down syndrome cannot cope with an unexpected event. This reality is always difficult to accept, especially for boys. However, it would be too great a compromise of the young person’s safety, as well as that of others on the road – even with mini-vehicles not requiring a licence.
Like any citizen, your child has rights and obligations, but because of his illness, he will need more protection than others.
- During his childhood, you make decisions for him. However, on coming of age, you must protect him from dishonest people tempted to take advantage of his good faith or of his person. An adult come of age is considered responsible for his acts. From age 18, protective measures provided by guardianship laws must be understood and considered. They are not an outside intrusion into family affairs, but a means of protecting against dishonest people.
- For important life events, responsible adults (parents usually) must first understand the Down syndrome person’s opinion as much as possible, then make decisions for him on that basis. A physician, a lawyer, a social worker who well understands the problems related to the illness are good advisers for choosing right options.
Those with Down syndrome have the right to vote. This right remains under partial guardianship (curatelle), but no longer exists in the case of guardianship (tutelle).
Marriage is legally possible, except in the case of guardianship (tutelle) and is a dream for many, but it is a commitment that few can really undertake. A young man with Down syndrome cannot have children due to an almost certain infertility. A young woman can be completely fertile from the time of her first period. Gynaecological check-ups are desirable, with an ultrasound scan of the pelvis being better tolerated than a full gynaecological examination.
Although fertilisation is possible for the young woman, motherhood is not a good idea for several reasons. The young mother cannot assume the care and education of her child and, faced with this, she will be very upset. Parents, often aged, will be adding to the concern of their daughter, that of a baby. Finally, the child is at risk of having his mother’s Down syndrome and, possibly, his father’s handicaps, if he is indeed handicapped. The child, whether affected or not, will suffer from his parents’ illness in any case.
A young woman will generally suffer more than a young man in not being able to marry. Therefore, it must be accepted and she must understand that, like many other young women, her calling in life is to do many wonderful things, but not to have a child. That does not prevent her from having a fulfilling and successful life. Parents can also refer to well-known figures with whom the young woman would be proud to identify.
The person can inherit. However, in most cases, parents start planning the child’s future very early. Several solutions exist, well known to lawyers and specialised social workers. Measures of legal protection are indispensable, because the adult is not capable of managing his property; he must be protected from scams or imprudent spending. For example, he can be given a certain amount of pocket money directly each week.
Every French citizen comes of age and is fully responsible for his acts at 18 years old. This puts those with Down syndrome at risk since through clumsiness, imprudence or an excess of candour, they may cause accidents or be victims of unscrupulous persons. It is therefore necessary to protect them legally, thus making them legally protected adults.
The maximum protection is through guardianship (tutelle).The guardianship judge names a guardian who takes all important decisions for the adult. Ideally, the guardian knows the person and his tastes, and respects them. If he is young, it will facilitate the difficult transition following his parents’ deaths.
Some parents prefer partial guardianship (curatelle): the guardianship judge names a curator. Partial guardianship gives less protection but maintains the right to vote.