The child becomes aware of his difference gradually, from the start of his life. When the mother has had a prenatal diagnosis, it is probable that in utero her child has been awash in worries. It is somewhat as if he lost his identity as a child to become an undefined evil, labelled by more or less scientific words such as “mongolism”, “Down syndrome”, “trisomy 21”. The child is subject to examinations and wondering looks that are not necessarily tender. He is there when the possibility of abandoning or renouncing him is raised.
At his birth, he feels the emotions of his mother and father, their worries, hesitations, fears about the future, and so on. He gradually realizes his difficulties as compared to other children, the differences between himself and others. He also suffers from the difference between what he can do and what is expected of him. Throughout his lifetime the way others look at him – either far less or far more than is natural – will be traumatising. He has to get used to being dealt with in ways that are clumsy, distancing, fearful, infantilising…or compassionate.
It’s best to speak to your child naturally, with complete openness on the subject. Right from the start it’s very important to start explaining in very simple words who he and his family are, but taking his condition’s limits and constraints into account. Of course, in the beginning, your child will not understand the meaning of the words, but he will be sensitive to the tenderness and respect with which they are said, the intonation of your voice. If these words come with tears it doesn’t matter – as long as he feels loved just as he is.
Your child must get used to hearing his disability spoken about. If he is happy and feels loved, becoming aware of his illness has every chance of taking place smoothly. He will tell himself he is different, that he realises it, but that he is having fun and has a family that loves him. This awareness must come from those closest to him. It is therefore important that his siblings not be uncomfortable with reference to their brother’s or sister’s Down syndrome. Daily life will bring occasions to talk about his difference, with your child and within your family.
He should be told about his illness gradually, in accordance with what your child is able to take in. Often, he will not really understand what that means, because while he knows he is different he will not consider himself disabled. It is up to the parents to make him aware of his difference and ensure he is proud of himself, especially before going back to school or with other new activities or environments.
The message should come first within the family unit, in a positive way; anything left unsaid will only have a negative impact. Speak to him in your own words, words from the bottom of your heart. These words help your child understand that he is seen for who he is, that he is not the only one to have his difficulties, fears and frustrations, and that he can count on the help of others. This preparation in the family unit will help him to face the sometimes hard words from the outside world. Sometimes parents refuse to speak with their child, taking the risk that their child first learn of the illness from that outside world. This announcement is often very painful for the young person.
Someday he may ask questions himself about the origin of his illness or his difficulties. Don’t avoid them. Speak also about the emotions that they bring. Specialised physicians and psychologists can help you take on these subjects. Explain to him that he has his place, like others, in his class, his family and society and that he is above all a unique person with his own qualities and faults.
Speak to your child about his illness, help him to know who he is and to accept himself as he is. This proves to him that dialogue is possible, and that he need not feel ashamed to talk about it. It’s important that he know you are available to discuss his condition or find good interlocutors as needed.
It will be long and difficult for you to accept your child’s condition, but it’s essential. The more those around him accept his disability and the various difficulties it creates, the more he is likely to accept them himself. Discover who this child is, as he is, give credit to him for the progress he makes and encourage him. It’s not about hiding his difficulties, nor of making more of them than they are; rather, it’s question of clearly explaining the limits and bringing out the positive to help him move forward.
A mother attests: “I believe that we, the parents, have to accept the illness before we can tell our child about it. That means giving him the right to be a Down syndrome child, which means he will be different, forever. That isn’t easy and, for my part, I constantly have to make the choice, again and again, of my son just as he is.”
Daily life brings occasions to explain your child’s limits to him while reassuring him that he can be helped. When he can’t do something, for example, you can tell him you understand it’s not easy for him and that you will help him. When he becomes aware of his disability, don’t allow him to use it to justify certain behaviours. For society to accept him, he has to learn to respect rules everyone has to.
It would seem indispensable to talk about it with your child; he can then realise his situation, love himself as he is and be proud of himself. He will also be comfortable with other young people, whether or not they have a disability. To ease this awareness and acceptance, you can seek out occasions for him to meet others like himself, and make friends. This can be done especially through associations. It’s important for him to have friends he feels good around.
A Down syndrome person, even if he doesn’t say so, has a deep-seated need for those around him to accept his illness. This call for help is heard in all the testimonials. Help is first given by speaking truthfully. Some parents speak with very courageous clarity to their children: “If we are going to see the psycho-motor specialist, it’s because you need help because of your Down syndrome”. And others:“ We thought he should hear from us first the words he risks hearing one day. He gave us the impression of being freed – freed that we know he is different, and reassured because at the same time we tell him we love him and will help him. “It’s important that a disabled person know the origin of his disability, if only to remove feelings of guilt.
The best way for parents to help their child is to let him face life. “The best way for him was to treat him exactly like his brothers and sisters, never to hide him, not to overprotect him from the aggressiveness of others; this was even if it caused him real pain, that we his family tried to soothe.” Some parents think that “awareness should be as early as possible, before the child suffers his disability alone and too deeply. He must get in the habit of trusting his parents when he has questions.” But in all this, the most important thing is to be gentle and loving. He has to be aware of his limits and find the best occasions to quietly make progress.
Talking about it means building on a truthful basis. With his disability, he will need the help of those close to him to let go of the idea of marriage, to find a way to go beyond it to find another path in life. A young Down syndrome child asked her mother “can I get married too?” at her sister’s wedding; in response her parent gave her the example of the physician who doesn’t marry to better take care for the children of others. She also spoke of their many single friends who did not seem unhappy: “they have found a meaning for their lives in the giving of themselves”.
More important than the timing of the revelation is the need for an atmosphere of love, so that the person can accept himself as disabled. It’s very important for him discover that disability is a universal human fact that makes no one inferior. He needs to know that he is not the only one with difficulties. He also needs to know the limits of those around him.
A child did not want to meet others with disabilities, because he did not want to see himself in them. His parents explained to him that just as it was hard for him to read, it was hard for them to read without glasses. To the little girl who asks: “Do you think I am very disabled?” her mother answered “we are all disabled in life.” “Some disabilities can be seen. For example, your sister wears braces, your little brothers run faster than me. And there are many hidden disabilities. They are often the most serious.” Helping another to accept his limits supposes that you first recognise your own and know how to accept them.
“It doesn’t seem wise, at least for the mentally disabled child, to become aware of his disability too early. I believe he will do so bit by bit. But there will come a time when he will really need for someone to talk with him.” And another educator underlined that awareness must be “personal and progressive”, that the helper must take action “very prudently, knowing that the problem is so painful that otherwise he risks doing more harm than good”. He has to be told as part of a long accompaniment, with a great deal of careful listening for when it’s the right moment.