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Learn to communicate Communication is essential to a person's development, and so one of the major challenges of speech therapy is to enable the person to communicate, if not through oral language, then through alternative means of communication. Some patients don't speak, and sometimes never speak or speak very little. But that doesn't mean they can't communicate.   Speech therapy offers these patients alternative communication tools. One of the best-known is Makaton©, which combines signs, pictograms and spoken language. This involves signing the key words of each sentence, without the syntax, thus highlighting them and simplifying comprehension or expression for the patient. This requires those close to the patient to have a certain mastery of signs, and to simplify and adapt their language to enable the exchange to take place. Just as a child learns to speak because he hears himself being spoken to, a child with language difficulties will only use signs if he is addressed in this way. As speech therapist Bénédicte Ronssin recounts, "This was the case with one of my patients, who hardly spoke at all when he was with his family, but communicated a lot with me, simply because his family didn't use signs, even though they enabled him to express himself." Rosalie Delille, also a speech therapist, testifies to the same experience on several occasions: "Parents are sometimes very surprised to see the child reproduce the signs I show him, when they themselves don't use them." It is essential to deploy alternative solutions for the person experiencing communication difficulties, as an inability to communicate can lead to a real lack of awareness of emotions, for want of being able to express them, and to behavioral disorders. A case in point is that of a young patient who was suspected of having autism because of her behavioral problems, which were the consequence of a deafness that had never been detected. The disorders she was developing were linked to the major communication difficulties she was encountering, due to the lack of tools adapted to her deafness. The other aspect of this Makaton© program is the use of pictograms: the person can express what they want by showing or giving a picture to the person they are talking to. This has the advantage of being accessible to people with praxis problems, who therefore have difficulty signing, and of being visually permanent, which can help the person retain what is being said. However, if the person is able to make himself understood, it is not certain that he will have the same level of comprehension when addressed. Some patients give the illusion of understanding what is said to them, when this is not always the case. This calls for special attention, and a simplification of language on the part of those around them. Continuity of work at home   "Parents of young children often ask whether their child will ever speak. I usually tell them that the most important thing is for their child to be able to communicate: if it's not through oral language, it will be in other ways", says Bénédicte. Many of the families concerned are saddened that there is no medication to improve language. Of course, there's no such thing as a miracle pill, and we have to accept that language disorders are part and parcel of intellectual disability. However, there are proven solutions for improvement, such as augmentative and alternative communication (AAC) and rehabilitation. However, the first "drug" in speech therapy is the patient's environment, which stimulates him or her through its demands. The speech therapist's work is in vain if it has no echo in the person's daily life. Speech therapy at Institut Lejeune   Speech therapy consultations are by prescription only, and the Institut is no exception to this rule. "When patients see the Institut's speech therapist, it's at the request of a doctor", explains Thérèse Balmitgère, speech therapist at the Institut. These consultations, lasting an average of 1.5 hours, are organized into three stages: firstly, the interview, during which the speech therapist asks questions about the patient's life and habits; secondly, observation of the way in which he or she plays, expresses himself or herself and understands; and thirdly, a time of conclusion and recommendations, intended for the parents. When the family is fortunate enough to have a speech therapist in town who follows their child, the Institute's speech therapist can liaise with the latter to discuss and reflect together. Patients of all ages are seen by the Institute's speech therapist, because speech therapy can begin as early as birth, with massage or stimulation, which can also be provided by the parents. This will promote the child's development, not only in language but also in swallowing, for example. However, it's never too late to start. "I knew a patient in his thirties who stuttered a lot: by following the pictograms with his finger, he was able to become more intelligible", says Bénédicte. Speech therapy is therefore essential, because of its ability to prevent language or behavioral disorders, or to improve a person's quality of life, provided it is based on an alliance between the practitioner and the family and friends who agree to continue the work at home....

Friendship By Dr Pauline Groz, general practitioner at the Institut Jérôme Lejeune From the earliest age, each of us experiences the need to be loved, esteemed, surrounded, and to belong to a group. The affection of those around us is essential if we are to develop and grow in a climate of trust. It's the other person's kind and loving gaze that makes us aware of our own value. Apart from the family, one of the places where we can experience this richness is in our friendships. We don't necessarily need to have many friends, just good ones! Developing friendly relationships will have many benefits for your child or loved one with a genetic intellectual disability. On the one hand, it will help them to gain self-confidence, by asserting themselves within a group with its differences and richness. It will also help them discover the qualities for which they are appreciated. It will also enable him to experience empathy, and learn to identify his emotions by sharing them with his friends. He'll learn that he can bring joy and support to others, and vice-versa! If he finds it difficult to put his emotions into words, you can help him by offering pictograms or drawings, from which he can choose the one that corresponds to his feelings. Finally, friendship is an experience of loyalty: the relationship is created over time, and needs to be nurtured and maintained. It's a good exercise! In fact, why not take advantage of the summer vacations to invite your child to check in with a friend?  The older your child grows, the more he or she will need to develop in circles other than the family circle. It's up to you, parents, to help them meet new people through school, hobbies, associations or professional commitments... It's never easy to let your child become independent and to accept that he or she can live things without you, all the more so when he or she has a disability. But it's a necessary step in helping your child to grow up, and one that involves taking on autonomy. For example, you have to accept that he won't be able to tell his friends everything he's going through. He may be stimulated by friendships with people without disabilities, but he will also be stimulated by friendships with people who look like him. The company of children from different backgrounds, far from dragging him down, will on the contrary help him gain in responsibility and develop his attentiveness to others. Dare to accompany your child in this process of reaching out to others. He'll come out of it all stronger, and will radiate this self-fulfilment to those around him!...

Reconciling hydration and swallowing problems How to reconcile hydration and swallowing problems? This question is often asked by parents. A young child with Down's syndrome may seem uninterested in water. They may not drink much, drink very small quantities or even refuse water. What should we do? Getting a young child with Down's syndrome to drink water is no easy task. Many of them categorically refuse to swallow water, whatever subterfuges their attentive parents devise to help them. Testimonials abound from parents expressing distress at their Down's syndrome carrier child's refusal to drink water: "my 8 ½ year old son can go a whole day without drinking water and without asking for any. When he was a baby, I had a lot of trouble getting him to drink water: he would refuse, spit it out... Today, I still sometimes have to go around the water. He likes to drink several bowls of milk in the morning, and I ask him to finish a glass of water at every meal, but he still sometimes refuses outright. He likes to drink soup and orange juice and accepts - with difficulty - raw vegetables (cucumber, tomato), except for melon in summer. So I play on his preferences: soups in winter, melon in summer, with no restrictions. I've also noticed that he swallows water from a glass while brushing his teeth, and is more willing to drink from a gourd." Why is it so difficult for children with Down's syndrome to drink water? Could it be the taste? Consistency in the mouth? Difficulty swallowing? Does swallowing cause discomfort or pain? Young children with Down's syndrome may present particular swallowing difficulties: difficulty in mobilizing the tongue and therefore in propelling and controlling liquids, delay in triggering the swallowing reflex. There may also be sucking difficulties, such as a tongue frenulum that is too short, which are not particularly linked to trisomy 21, but occur in some young children. Trisomy 21 can also lead to a lack of sensitivity in the oral sphere. Water, tasteless, odorless and at room temperature, does not provide sufficient information, making it difficult to control and swallow, leading to a forward leak, or conversely, a false-route. Desensitization can be achieved by stimulating the inside and outside of the mouth, massaging (see our suggestion here) and playing games. The child's daily water requirements A child with Down's syndrome, like any other child, needs water to stay hydrated! Water is not digested but directly absorbed by the stomach wall, so it instantly hydrates the body. All other drinks contain substances that have to be digested or accumulate in the body. What's more, most of these substances are not very good for your health, notably because of the sugar contained in juices, syrups, soft drinks, etc. So how do you help a child with Down's syndrome learn to drink water?You may have the impression that your child drinks little water. In reality, he may still be drinking a lot of milk, or eating a diet rich in water. This meets part of his water requirements. It's normal for children to take small sips! It's rare for children to drink large glasses of water all at once. But drinking often, and in small sips, is the best way to stay hydrated. If your child has little interest in water, accept that he or she drinks little, but offer water often - it can work! As your child gets older, it's better to offer him a glass rather than a bottle, so that the neural maturation of the mouth can take place and the tongue can find its place in the mouth, paving the way for good articulation. You can start by offering to drink from a straw, with an anti-reflux straw that's easier to reach than the traditional straw, or by finding glasses that are easier to handle, such as those with handles or spouts. In conclusion Children with Down's Syndrome can take a long time to get used to eating: months, years, every child is different. We sometimes have to be cunning, gentle and come up with solutions: keeping a bottle that the child likes and opening the teat, giving water drop by drop, through a straw, with a Doliprane syringe, with a spoon... until the child assimilates it in the mouth... Jellied water can also be a good alternative, helping to avoid false routes while waiting for the muscular tone of the oral sphere to strengthen. A few practical tips: Always have a bottle, with a suitable spout, within easy reach: in the car, in her room, in your handbag, etc.Set a good example and drink often!Add something motivating to his drink ... but leave out sugary products, which will destroy the benefits of water, stimulate digestive enzymes, whet his appetite and make him crave more sugar. Why not add a small amount of freshly squeezed fruit juice (yourself), without any other additives? Herbal teas for children can be a good solution.Use a tool that facilitates sucking. For example, an anti-reflux straw, which allows the liquid to rise in the straw in several aspirations without falling back: practical for little ones who don't suck much. The wow cup glass or the Munchkin Miracle also make drinking easier.Choose a playful glass that appeals to your child: a bottle in the shape of a bear, a gourd bearing his or her first name, a glass with his or her favorite hero, a personalized bowl - there's no shortage of ideas!If necessary, opt for very cold water rather than room-temperature water, or even sparkling water: your child will perceive it more clearly.If water intake is really difficult, consider offering hot or cold soups with added water, or water-filled vegetables or fruit (melon, cucumber, watermelon...)....