Useful info
Useful contacts of specialists
http://www.downsyndromebg.com/data/vizitkizasaita.doc
Breastfeeding a baby with Down Syndrome:
http://www.downsyndromebg.com/data/Breastfeeding_a_baby_with_DownSyndrome.pdf
Baby is a baby first
There is nothing quite like a baby…there’s a lurch in the heart when we touch the beginning of a life in the small person of an infant. For some parents, the lurch is made more poignant, even painful, by the fact of their baby’s diagnosis of Down syndrome.
I’ve had the great pleasure of holding a number of soft, beautiful babies who have Down
syndrome. Their parents want to find out what it all means, what they can do, what to think about the future. The first professionals to talk to the parents of babies with Down syndrome tend to discuss the differences parents may see, difficulties babies will encounter. Armed
with information about what milestones their child may not reach, what problems she may
have, what services they should obtain to avoid potential problems, new parents want to help
their babies as soon as possible. So they come to me (and to numerous others) to get this help…to find therapy, activities, and solutions to problems that may or may not exist.
We just don’t know, at an early age, in exactly which ways Down syndrome may affect a child. She may be really good at cognitive activities, but have significant delays in movement, thereby falling behind her peers in playground and paper-and-pencil activities. He may be fairly good at gross motor, excelling in sports. Ocular control may be an area of need, or may be perfect. Language may be good, or may need lots of work. However, one thing we know for certain… babies don’t deal with these things, no matter what their chromosomes look like. They expect to be carried, cuddled, talked to, fed and generally catered to. They learn they are lovable, cute, and the center of the universe. They begin to know who their family members are, and who is the soft touch in the house in the middle of the night.
Children with Down syndrome are at risk for certain physical and cognitive delays. It behooves parents to keep an eye open for problems that could arise. It’s important that they know something about their child’s diagnosis so that they can be alert and helpful. But my belief is that the most important things that parents of babies with Down syndrome can do are exactly those things that all parents do. They cuddle, feed, sing and love. Not the kind of things you need a Developmental Therapist for… or any other therapist, for that matter.
I want to be clear. Young children with Down syndrome often show delays that will require intervention, so they can be happy with themselves and do their very best. And parents will find themselves driving their children around for ear infections, speech therapy, developmental evaluations, etc. But the main advice I have for parents of new babies with Down syndrome boils down to this:
You have a beautiful new baby. There will be some areas that need work, but what you have right now is precious and perfectly right.
Excerpted from Kate Sefton, Master Developmental Therapist
Focus on grandparents
The impending birth of a child generally fills an entire family with anticipation and delight. The hopes and joys of the prospective parents and grandparents tend to be dashed however, when the eagerly awaited infant is born with Down syndrome. Both parents and grandparents may experience similar feelings of confusion, shock and grief. The grandparents’ reaction however, is doubled--grandparents suffer not only for the newborn but for their own child’s pain as well. As the grandparents of a child born with Down syndrome commented, “I worried, of course, about the welfare of my grandchild, but my heart broke even more for my son and daughter-in-law for what they were going through and for not being able to experience the normal joy of becoming a parent.”
Initial Reactions
The initial reactions to the birth of a child with Down syndrome may be numbness. Numbness is nature’s way of protecting us from feeling unbearable pain, and it gives us time to develop ways of coping. A frequent coping mechanism that follows is denial. Feelings of unreality, that this really didn’t happen or it is a mistake, are common examples of denial. Grandparents frequently cling to denial reactions, hoping against hope that their grandchild was incorrectly diagnosed. In extreme situations a grandparent may avoid visiting or even telephoning, thus not having to come to terms with the painful truth.
Unfortunately, this type of behavior can be mistaken for disinterest, compounding the new parents’ sorrow and robbing them of much needed support. It is important to recognize that clinging to denial is one way of not having to grieve. Persistent denial, as understandable as it is, will only backfire because we must grieve in order to heal. Grief is the natural expression of all the emotions we feel when faced with an upsetting experience. Not allowing oneself to feel these tremendous pangs can often result in depression, stress-related physical illness, insomnia, and other emotional problems. Paradoxically, the only way to relieve grief is to permit the sorrow and pain to surface. Feelings of grief shared with someone else, such as a spouse, friend, or member of the clergy, gradually lessen in duration and intensity. Grandparents who believe they are being strong by denying or suppressing their grief feelings run the risk of compromising their ability to function and being of any assistance.
Very often the grandparents and new parents are unable to communicate with each other exactly how they feel. Both may feel vulnerable or wish to protect each other. However, sharing feelings honestly and openly will bring the family closer together. Sympathetic words or tender encouragement can go a long way at this point.
One of the most frequent reactions to tragic circumstances is anger. This can be a generalized response such as “why did this happen to me?” Or can be directed to others, such as the doctor or the hospital where the child was born.
Anger in its extreme form can manifest itself as uncontrollable rage, thus paralyzing and frightening at the same time. Frequently, anger is displaced and serves as a way of assigning blame to others, especially to the doctors and therapists. At times misplaced anger is directed towards the child with Down syndrome for being disabled and this unhappy situation can result in rejecting the child altogether.
Unfortunately, there is no easy answer to dealing with anger. Although anger is understandable, it is ultimately non-productive. As one young parent told the grandparents, “My anger went away when one day I looked down at my child and thought not “Why me?” but “Why him?”.
Of all reactions, feelings of guilt and blame are the most cumbersome. Comments from other family members: “This never happens on our side of the family” – only adds more distress. In some cultures the birth of a child with a disability is seen as a form of punishment for something that happened in the past, even in a previous life! Some parents and grandparents feel that having a child with a disability is a sign of weakness or an inherent imperfection even when this is patently untrue. Guilt or laying blame serves no purpose; it shuts out the world and closes off avenues of help. Grandparents can play a major role in assuaging unfounded guilt by assuring the young parents that laying blame at their doorstep is unthinkable.
Depression and anxiety are other reactions that can occur and recur. The best way to deal with depression is to recognize that sad feelings are justifiable under the circumstances. Active involvement in the child’s welfare may dispel the gloom or lessen the intensity. However, when the depression is generalized, pervasive or extreme, professional intervention is indicated. Acceptance is the hoped-for reaction to the birth of a child with Down syndrome. Although sorrow over the event may never disappear entirely, the unhappy feelings do lessen in intensity as time passes. There is a more positive side to the picture, for as the child grows, parents and grandparents alike have the opportunity to experience joy and pleasure just as with any other child.
As one grandmother commented, “Although I can never completely accept the fate that has befallen my children, it doesn’t get in the way of the love we feel for my little granddaughter. Somehow that makes the reality of the situation not as grim.”
Things to Remember
Most grandparents who have financial resources and leisure time at their disposal find great pleasure in the relationships they develop and the activities they share with their grandchildren. In many cases grandparents have a more relaxed attitude towards their grandchildren; they are not as pressured or fearful of spoiling children as when they were young parents themselves. Tales of doting grandparents who indulge their grandchildren’s every whim are legendary, however, including allowing grandchildren forbidden sweets, staying up late, or ignoring family rules although prompted by the most loving of intentions, indulging grandchildren can create family friction--especially if the child has special dietary restrictions or needs careful behavioral monitoring.
Grandparents can avoid hard feelings by sitting down beforehand and requesting careful explanations regarding their grandchild’s care, including for example what activities are most beneficial, hints on handling, and dietary needs.
By becoming as expert as possible, grandparents will be able to provide consistent care and help when and where it is most needed. Use leisure time to your grandchild’s best advantage. Because grandparents tend to be removed from the day-to-day care of children, they are better equipped to do things. The grandfather, for instance, who patiently tosses the ball back and forth to help with coordination, or the grandmother who spends hours teaching shoelace tying is providing a loving service that delights both grandparent and grandchild. The best gift a grandparent can offer is the gift of time.
Providing actual financial gifts, however, requires careful evaluation. Many well meaning grandparents leave bequests or send funds to their grandchild who has Down syndrome, not realizing that it may not be the best way to provide for the child’s needs. Grandparents and parents should seek the advice of attorneys or experts in the field before drafting wills, planning estates or giving sizable gifts. Regulations vary from state to state so it’s a good idea to contact your local Down syndrome group for information and guidance.
Do’s and Don’ts
• Do be aware that most schools, agencies and parent support groups welcome attendance by grandparents. Some associations even have grandparents’ groups. This is a good way of keeping abreast of information on Down syndrome and related issues and sharing support with other grandparents who have grandchildren with Down syndrome.
• Do avoid the pitfalls of cliché-ridden advice. Comments about God’s will, or Pollyanna statements about things not being as bad as they seem sound condescending and don’t provide the comfort you wish to imply.
• Do remember that if you have a positive, tender, loving attitude towards your grandchild, others in the family will feel the same way. The more support from family members, the better the parents may tend to feel.
• Do remember that non-verbal expressions – a loving pat to your grandchild’s head, and hugs to the parents, convey what words cannot express. By the same token, pitying glances and an anxious tone of voice deepen gloom.
• Do be aware of any heightened sensitivity in the parents. Be careful about what you say and remember that your most well intentioned remarks can be taken the wrong way. Handle this with grace and humor.
• Do let your children know that they can rely on you in good times and bad. Many grandparents have flexible schedules that can be arranged to meet the needs of the grandchild. Just knowing that this kind of help is available can lessen anxiety and strengthen family bonds.
• Do offer to visit or help out with your grandchild regularly. Sometimes staying at a nearby hotel can ease the logistics and make the visit even more rewarding for all concerned.
• Do find out the best time for you to visit or telephone. Your children might relish their privacy or be in the middle of things and, unless you ask, your visits or telephone calls might come at an inconvenient time for them.
• Don’t allow any friction between yourself and your children to interfere with your relationship with your grandchild. The bonds of love between grandparents and grandchild can be genuine and profound. The relationship can enhance and nurture a grandchild’s feelings of self-esteem and self-worth.
• Do be aware that there may be revolving cycles of emotions. Feelings of depression, anger, non-acceptance or sorrow may surface around birthdays or other milestones, such as when your grandchild should be driving or getting married. Knowing this ahead of time can prevent the reaction from becoming extreme.
• Do remember that above all - the relationship of grandparents to a grandchild is unique, and the love that is generated is freely given and like no other. Your grandchild is first and foremost a child – more like other children than unlike. The needs of your grandchild differ only in degree, not in kind. Your grandchild with Down syndrome will respond to your love, your jokes and games, and your abiding affection exactly like any of your other grandchildren.
Reprinted with thanks from the Down Syndrome Center of Western Pennsylvania.
Tips for Playtime with Your Grandchild
Excerpted from Janet Osborne, M.Ed, University of Washington, Seattle, WA
As an infant educator I am often asked how I teach babies. My reply, which is really an introduction to infant development and the effects of early intervention, is often a surprise to people. But, basically what I do is play.
I use the word “play” in a very broad sense. Newborns “play” as they look at their parents. Babies play as they bang their spoon on the high chair, or dump out the contents of every container they can find. Children learn through these experiences with their environment. They also learn by playing with others. There are several things I keep in mind as I play with the babies in our infant classrooms. I’d like to share them with you to help your playtime be more fun for you and your grandchild.
Observe. Take time out to watch your grandchild play. Whether the child is two months or three years old, what a child does during independent play may give you ideas on the types of games you can play together. If your grandchild is beginning to reach toward objects, offer her a variety of things to reach towards—brightly colored balls, a rattle, a musical teddy bear…If your grandchild is picking things up for the pleasure of watching them drop, let him drop a variety of objects, perhaps into the bathtub, into your purse, or into a kitchen drawer. Look at what the child is doing and think of games to help her practice that skill.
Be Creative. To engage a child in a game with an object, present the object in a playful or challenging manner. Rather than handing the toy to the child, make the toy “walk” over to the child. Try making the toy “fly” and let the child reach up for the toy. Cover the toy and let the baby discover it, or tie a string so that the baby must pull on the string to get the toy. Use your imagination. A playful and challenging presentation of a toy can capture a child’s interest and get your game off to a good start.
A Favorite Early Game. Much of what babies learn, they learn by imitating. Turn-taking games can give your grandchild an opportunity to imitate you. Taking turns is also an important part of communication and becomes a part of most any game. Whether you are stacking blocks, making sounds, shaking a rattle, or scribbling, you can reinforce turn taking. After you take a turn, pause to give your grandchild a turn. A five-second pause may not be long enough. Try waiting up to a minute, especially with younger babies. You may be surprised at the number of things they will imitate, and the number of turns they will take. Wait for any “social” signs, such as a reach toward you, a smile, or a sound that shows the baby is communicating with you. While you play with your grandchild, keep in mind the importance of eye contact during communication. For a newborn, looking at a face is “work”. A newborn will look away, then look back again. Let the newborn lead this game. With an older child you may want to be more direct. As you play and you say the child’s name, try waiting for the child to make eye contact before you continue. Eye contact should be a pleasant experience. When your grandchild makes eye contact, smile and show your pleasure.
Watch for Signals. Babies can tell you a lot about whether they like or are ready for the games that you play with them. If you begin to play, with or without toys and the child is interested, engaged and/or happy, it is probably an appropriate game. If the child is not attentive or begins to fuss, that tells you something else. The child may not be ready to play at all, or the game may be too easy or too difficult. Watch for these signals. If the child is happy, keep going. If not, stop or change the game.
Keep in mind some of these ideas as you play with your grandchild. Playtime is an extra special time that can provide positive learning experiences for adult and child. So grab that rattle and have fun!
How Grandparents Can Help!
By Robert M.Greenstein, MD
(Excerpted from June, 1990 newsletter of the Connecticut Down Syndrome Congress)
The following recommendations were identified by grandparents, as four important ways they can help their children after the diagnosis of Down syndrome has been made:
• Listen carefully to your children as they explain what Down syndrome is, how it was diagnosed, what is expected to happen in the short term and the long term, and then ask about the things you don’t understand. The new parents of a child with Down syndrome will need a sensitive and understanding listener. If it also happens to be their own parents, all the better.
• Educate yourselves about Down syndrome. Contact local and national organizations and talk with experts in the field. It will be important for your children to know that you are educating yourselves about Down syndrome, just as they are.
• Keep a positive attitude. Your children are having a hard enough time as it is, and will need the steady support of their more experienced parents.
• Consider joining or starting a grandparents support group through the local Down syndrome parent organization.
From Pacer, the Parent Advocacy Center for Education Rights, these Grandparenting tips:
• Offer support, but don't hover: By doing so, your child will know you trust their decisions about medication, therapy, education, etc.
• Provide support in practical ways: Open communication is important. Ask what you can do to help. You can attend doctors' appointments for moral support and an extra set of ears and notes, or baby-sit to allow your children to relax one evening a week. Even if you live far away, you can help by locating therapists in your grandchild's city and finding useful books or other information.
• Offer opinions only if asked: Some parents might be sensitive about suggestions for raising their child. Try to understand that raising a child with a disability is difficult and give advice only when your child asks for it. "Sometimes my parents say things that sound as if they think we aren't doing things right," said a mother. "For example, my child has difficulty eating. But my mother has said, 'She does just fine when she's with me.' That might have been Mom trying to reassure me, but that's not how I heard it."
• Find out what you need to know about the disability: If you become informed about a child's disability, it indicates that you really want to be involved. However, follow the lead of your children. They have gathered plenty of information, and they have the information they need to raise their child. Before you offer new information, wait until they ask.
• Accept your grandchild as he or she is: Treat the child with a disability as you would any grandchild. Acknowledge the disability, but recognize the talents and abilities of your grandchild.
• Give yourself time to grieve: Many grandparents say their grief is magnified because they watch their child grieving also. Let yourself grieve and take care of yourself during difficult times.
• Enjoy your grandchild: If you enjoy reading to your grandchild, sit on the couch and read a book-even if the doctor says the child can't hear. Rock your grandchild in your favorite rocking chair. Bring pictures of your grandchild to your friends. Spend time together-you will quickly learn all of the talents and abilities your grandchild has and the important place you have in his or her life.
Physical Therapy in Down Syndrome
by Patricia C. Winders
As new parents of a child with Down syndrome, you already have your hands full just trying to get acclimated to this new country, to obtain the correct guidebooks and learn a few words of Dutch. Therefore, you are understandably skeptical when someone suggests that one of the new people you should meet is a physical therapist. They are recommending that you start your new infant in regular physical therapy. Why physical therapy? Don't children with Down syndrome learn to walk and run, just like other children do?
The purpose of this article is to answer that very question. Why indeed should you invest your time and money in physical therapy? After all, you are quite right; children with Down syndrome will learn to walk, run and jump. It will take a little longer than it does a typical child, but the goals will be achieved. Typical children walk at around 12 months of age, and the average child with Down syndrome walks at about 24 months of age. And on top of that, physical therapy is not going to accelerate your child's rate of gross motor development. With or without therapy, the average child with Down syndrome is still going to walk at about 24 months of age. So now that I've just about convinced you that physical therapy isn't worth your time and money, let me say that physical therapy is one of the most important services that the child with Down syndrome will receive in the early intervention period, and it is during this time that physical therapy will have the greatest impact. Let me explain some of the reasons that I recommend it.
There are 4 factors which will have an impact on the gross motor development of a child with Down syndrome:
1. Hypotonia: Tone refers to the tension in a muscle in its resting state. The amount of tone is controlled by the brain. Hypotonia means that that tone is decreased. It is most easily observed in children with Down syndrome when they are infants. When you pick up a baby with Down syndrome, you will notice that he feels "floppy" or somewhat like a rag doll. If you put him on his back, his head will turn to the side, his arms will fall away from his body and rest on the surface, and his legs will fall open. This floppiness is due to hypotonia. Hypotonia affects each child with Down syndrome to a different degree. In some the effect is mild, and in others it is more pronounced. Although hypotonia diminishes somewhat over time, it still persists throughout life. Hypotonia will make it more difficult to learn certain gross motor skills. For instance, hypotonia of the stomach muscles will make it more difficult to learn to balance in standing. To compensate for this, children with Down syndrome when learning to stand at a coffee table will tend to lean against the table for support.
2. Ligamentous laxity: Children with Down syndrome also have increased flexibility in their joints. This is because the ligaments that hold the bones together have more slack than is usual. Ligamentous laxity is particularly noticeable in the hips of infants with Down syndrome. When lying on his back, the legs of an infant with Down syndrome will tend to be positioned with his hips and knees bent and his knees wide apart. Later you will notice it in your child's feet. You will notice that when standing, his feet are flat, and he does not have an arch. This increased flexibility tends to make the joints less stable, and it is, therefore, more difficult to learn to balance on them.
3. Decreased strength: Children with Down syndrome have decreased muscle strength. Strength can be greatly improved, however, through repetition and practice. Increasing muscle strength is important because otherwise children with Down syndrome tend to compensate for their weakness by using movements that are easier in the short run, but detrimental in the long run. For example, your child may want to stand, but because of weakness in his trunk and legs, he can only do so if he stiffens his knees. You will be able to help him develop the strength he needs so that he can stand properly without locking his knees.
4. Short arms and legs: The arms and legs of children with Down syndrome are short relative to the length of their trunks. The shortness of their arms makes it more difficult to learn sitting because they cannot prop on their arms unless they lean forward. When they fall to the side, they have to fall farther before they are able to catch themselves with their arms. The shortness of their legs makes it harder to learn to climb since the height of the sofa or stairs presents more of an obstacle.
The purpose of physical therapy is not to accelerate the rate at which the child with Down syndrome achieves his gross motor milestones. It is to help the child avoid developing abnormal compensatory movement patterns that are common ways of adjusting for the four factors we have discussed. You can predict with near certainty that children with Down syndrome who do not receive physical therapy will develop the following compensatory movement patterns:
- Standing and walking with their hips in external rotation, knees stiff, feet flat and turned out,
- Sitting with their trunk rounded and pelvis tilted back,
- Standing with a lordosis (stomach out and back arched).
These patterns are likely to result in orthopedic problems in adolescence and adulthood that will impair physical functioning. These problems can be avoided by proactively teaching optimal movement patterns so that strength is developed in the appropriate muscles.
Besides preventing the development of abnormal compensatory movements there is an additional opportunity that can be realized by the parent and child during physical therapy. The mastery of gross motor development is the first arena in which your child will take on the challenges of life. Fine motor development, speech and education are all challenges that lie ahead, but gross motor development: rolling over, sitting, crawling and walking are the first challenges he will meet in life. Additionally gross motor skills will be an area of strength for him. The opportunity is for the two of you to learn how to work together in meeting and overcoming the challenges. It is the opportunity for you to begin to learn how he learns. For instance, you are likely to find that he does best when information is presented in small, easily digested bites. You will discover whether he is a risk taker or someone who needs to proceed at a slower and more careful pace. You will find that motivation is a key component to getting his best performance. What the two of you learn in meeting the challenge of gross motor development can provide you with a model for how to meet the other challenges that lie ahead in other areas.
Physical therapy services can be accessed through the Early Intervention Program in your area. In 1975 President Ford signed into law PL 94-142, the Education of the Handicapped Act (EHA). The law was amended in 1986 to establish the Handicapped Infants and Toddlers Program (Part H), which provided for services for children from birth to their third birthday. Further amendments in 1990 and 1991 changed the name of the law to the Individuals with Disabilities Education Act (IDEA), and Part H became known as the Early Intervention Program for Infants and Toddlers with Disabilities. States use the law as a guideline for developing policies for providing services to infants and toddlers. Exactly how those services are provided and through what agencies varies from state to state.
In choosing a physical therapist, you want one who has pediatric experience. This gives them knowledge about how children develop gross motor skills. You also want a physical therapist that has experience treating children with Down syndrome and understands the abnormal compensatory movements that they are prone to develop.
Once the child with Down syndrome has learned to walk, you will use the post walking skills to refine his walking pattern (i.e. a narrow base with feet pointing straight ahead). At this point you will want to access community recreation programs like Gymboree, dance, gymnastics, adapted physical education programs or any other program that develops strength, balance, speed and endurance.
Once your child has mastered the basic gross motor skills, your attention will necessarily and appropriately be drawn to other areas, such as speech and language and school performance. Still, you want physical exercise to become an integral and enjoyable part of your child's day to day life. A sedentary life style has negative consequences for anyone, but more so for a person with Down syndrome. If you want additional information, my book, Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals, provides you with step by step instructions to facilitate the development of gross motor skills. The book is available through Woodbine House (800) 843-7323.
Useful web-sites:
http://downsyndrome.narod.ru/index.html
На главную
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http://www.photounion.ru/contests/mishukov_foto.html?params&id=1
альбом-календарь "Синдром Любви" Владимира Мишукова (деятели культуры с детьми с синдромом Дауна).
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http://www.metenkov.narod.ru/gallery/Popova_children/Popova_children_index.htm
Выставка фотографий Екатерины Поповой "В каждом ребенке - солнце", Фотографический музей “Метенкова”, Екатеринбург
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http://www.narodnapravda.com.ua/life/4660202169263/
"Дети с синдромом Дауна. Возможности социальной адаптации." Обучение детей с синдромом Дауна опирается на их сильные стороны: хорошее зрительное восприятие и способности к наглядному обучению...
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http://www.narodnapravda.com.ua/life/465ff84b60bde/
"Не оставляй меня, мама." Враги человека с синдромом Дауна – это, прежде всего невежество, страх, предрассудки, непонимание, безразличие. На самом же деле, эти дети, обделенные одним – наделены другими – прекрасными качествами.
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http://www.sciam.ru/2007/3/neyrobiology.shtml
РАЗБИТЫЕ ЗЕРКАЛА: ТЕОРИЯ АУТИЗМА. Аутизм нередко сопутствует СД, может быть кому-нибудь будет интересно и станет более понятным поведение таких детей и суть их проблем.
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http://www.strana.ru/stories/01/12/10/2187/308939.html
Когда 46 равно 47. О Выставке под названием "Люди как люди, только с синдромом Дауна"
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http://ps.1september.ru/articlef.php?ID=200400817
Они такие же, как мы. И нуждаются в первую очередь в равных с нами правах и возможностях, а не в жалости или снисхождении.
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http://psy.1september.ru/2000/46/contents46.htm
Источник методики NRI. Терапия родительско-детского взаимодействия.
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http://www.fpgp.ru/central.php?area=main
Благотворительный Фонд "Поддержка гуманитарных программ" - осуществляет программы в России, улучшающие качество жизни детей с нарушениями в развитии.
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http://www.komarovskiy.net/
сайт доктора Комаровского не о собственно детях с СД, но очень полезный сайт для родителей.
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http://www.romena.ru/
Уникальная методика Ромены Августовой в книге "Говори! Ты это можешь".
"На каждых 600 родившихся в нашей стране детей приходится один ребенок с синдромом Дауна".
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http://www.rebenok.com/info/earlydevelopment/zaitsev/
Раннее развитие. Система Н.А. Зайцева
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http://balance.sampo.ru/ravnovesie/953.html
Дети Синдрома Дауна – равные по праву.
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http://www.ds-health.com/ds_sites.htm#family
Персональные и семейные страницы людей с Синдромом Дауна из США и других стран. Десятки сайтов! (англ.яз., много фотографий)
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http://www.naritsyn.ru/read/books/8/index.htm
«ПРО ДЕТЕЙ И ИХ РОДИТЕЛЕЙ» Нарицын Николай Николаевич, врач-психотерапевт, психоаналитик
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http://www.aif.ru/online/aif/1290/12_01
"Судьба дауненка" о мальчике с СД, усыновленном американской четой, имеющей уже ребенка с СД
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http://www.roditeli.com.ua/view/daunasindrom2
"Синдром Дауна – это не приговор", эта маленькая статья от врача поможет родителям немного успокоиться.
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http://veras.nnov.ru/parents/aut_daun.htm
Информация о Нижегородской региональной общественной организациия поддержки детей и молодежи «Верас»
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http://www.dance.spb.ru/news/20050401.htm
Феномен человеческого «Я». Искусство преображает «ограниченные способности» в «безграничные». ( Петр Чайка, человек с синдромом Дауна, актер с дивной пластикой, создающий в ходе спектакля примитивистские портреты присутствующих на сцене)
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http://minsk.kp.ru/2004/11/19/doc42250/print/
“Валик – белорусский Дастин Хоффман” - о минском актёре с СД. Валик Бричковский играет самого себя.
--------------------------------------------------------------------------------
http://www.yubileyny.ru/index.php?id=news&sub=2002/020515/020515b
"Урок семьи Гончаренко" - небольшая история одной семьи.
--------------------------------------------------------------------------------
http://www.medzone.ru/baby/baby_31.html#8
Беджамин Спок. "Ребенок и уход за ним. Ребенок с дефектом."
--------------------------------------------------------------------------------
http://www.together.spbru.net/prt.php?part=1709&numb=24
ОСОБЫЕ ЛЮДИ «Добросердечие – тоже норма»
--------------------------------------------------------------------------------
http://www.defectolog.ru/
сайт Дефектолог заслужил хорошие оценки родителей на форуме за объем нужной и полезной информации по улучшению речи детей.
--------------------------------------------------------------------------------
http://www.gloria-lucia.com/forum/index.php
форум "В защиту жизни" - много интересной и полезной информации.
--------------------------------------------------------------------------------
http://www.zverevschool.net
Авторская школа для особых детей (г.Екатеринбург). Сайт для ищущих родителей и педагогов.
--------------------------------------------------------------------------------
http://www.miloserdie.ru/index.php?ss=1&s=8&id=916
"А Бог знал с самого начала..." О Кантабрийском Обществе поддержки детей с синдромом Дауна и их семей
--------------------------------------------------------------------------------
http://5tv.netexpert.ru/?cat=news&key=4000
Награда за упорство – олимпийская медаль. Судьбы у людей с синдромом Дауна в основном похожи. Но не все из них соглашаются с таким будущим.
--------------------------------------------------------------------------------
http://www.trud.ru/export/200410282052901.htm
Несмотря на тяжёлый недуг, Александр Дорошенко привёз с Параолимпиады в Афинах две золотые медали.
--------------------------------------------------------------------------------
http://www.mama.ru/club/mybaby/history/daun.htm
Татьяна: "Мой ребенок - генетическая случайность?" Письмо матери и отклики на него.
--------------------------------------------------------------------------------
http://www.downsideup.org/sindawn.htm
Синдром Дауна - самая распространённая генетическая аномалия
--------------------------------------------------------------------------------
http://www.parenting.ru/s.php/596.htm
Преимущества жизни вдвоем (синдром Дауна)
--------------------------------------------------------------------------------
http://www.downsideup.org/_articles/ludisd.htm
Люди с синдромом Дауна не являются больными
--------------------------------------------------------------------------------
http://www.nanya.ru/opit/8324
Что нам делать с этими людьми? Они нас совсем не понимают
--------------------------------------------------------------------------------
http://www.nanya.ru/opit/2210
Тройной тест или тест на синдром Дауна. Успеть морально подготовиться? Продумать вариант усыновления?
--------------------------------------------------------------------------------
http://donnewse.narod.ru/archive/53/11.htm
Донецкие новости. Маленькие инопланетяне: аутики и даунята
--------------------------------------------------------------------------------
http://www.dvornik.ru/text.phtml?text=127&6007cbdc37f137a9aaf4c493fa4bbaa7
Дворник.ру. Особые дети
--------------------------------------------------------------------------------
http://shida.narod.ru/_private/rabota/drugie.htm
13 жираф - персональный сайт. РАБОТА
--------------------------------------------------------------------------------
http://www.humans.ru/humans/97812
Заколдованные принцы. Моцарт, Пушкин и Агата Кристи родились с синдромом Дауна?
--------------------------------------------------------------------------------
http://www.humans.ru/humans/978342
Ассоциация Даун Синдром. Мы и умственно иные
--------------------------------------------------------------------------------
http://www.krassever.ru/archiv/2000/08-12_stup/3.html
Даунята - они даже лучше, чем мы, потому что добрее, наивнее и мягче
--------------------------------------------------------------------------------
http://www.mama.ru/club/mybaby/history/daun_glaza.htm
Тайна марсианских глаз
--------------------------------------------------------------------------------
http://oldesign.by.ru/textDaun2.htm
Из журнала "Мой кроха и Я". Мать поймет только мать
--------------------------------------------------------------------------------
http://www.alphabet.ru/nomer.shtml?action=select&a=2616
Газета "Алфавит". Хоровод чинуш
--------------------------------------------------------------------------------
http://nv.mitaz.ru/index.htm?cat=st&s=211
Ведомости 2002г. СОТВОРИТЬ ЧУДО
--------------------------------------------------------------------------------
http://www.pravdasevera.ru/2001/05/17/8.shtml
Человек дождя с соседней улицы
--------------------------------------------------------------------------------
http://www2.vdv-s.ru/papers/vdvvlg/2004_38/text23.html
БЕЛЫЕ ВОРОНЫ ДОБРА. Общество в Волгограде
--------------------------------------------------------------------------------
http://ps.1september.ru/2001/12/7-1.htm
На одну больше. О "Даунсайд Ап"
--------------------------------------------------------------------------------
http://psy.1september.ru/2002/07/14.htm
ШАГ НАВСТРЕЧУ
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/445/08_01
Ребенок с синдромом Дауна в семье и без нее
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/480/05_01
Преодолеть синдром отверженных
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/462/05_01
Болезнь Дауна — преодоление синдрома
--------------------------------------------------------------------------------
http://www.aif.ru/online/moskva/563/04_06
Синдром искренности
--------------------------------------------------------------------------------
http://www.aif.ru/online/aif/1052/23_01
Смышленый дауненок
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/422/08_01
Особые дети
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/411/05_01
АиФ о "Театре Простодушных"
--------------------------------------------------------------------------------
http://www.teatrprosto.ru/
Театр Простодушных (сайт театра)
--------------------------------------------------------------------------------
http://www.aif.ru/online/moskva/399/07_01
Учитель даунят
--------------------------------------------------------------------------------
http://www.aif.ru/online/aif/1110/20_01
Дауненок из пробирки
--------------------------------------------------------------------------------
http://www.aif.ru/online/aif/1211/23_01
Счастье «простодушного»
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/370/09_01
25% всех заболеваний человека являются наследственными
--------------------------------------------------------------------------------
http://www.aif.ru/online/aif/1130/20_01
40 лет — время рожать…
--------------------------------------------------------------------------------
http://www.aif.ru/online/spb/528/07
Конелечение на «Солнечном острове»
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/425/03_01
Дети в «Детстве»
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/471/15_01
Право не рождаться
--------------------------------------------------------------------------------
http://www.aif.ru/online/ss/192/ss06_01
Подарок к пенсии. Поздние дети
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/396/16_01
Мама в 20, 30, 40 лет. Как влияют возрастные изменения на течение беременности?
--------------------------------------------------------------------------------
http://www.ap.altairegion.ru/145-03/8.html
Чтобы произнести МАМА ...РЕБЕНОК ДОЛЖЕН УСЛЫШАТЬ ЭТО СЛОВО 600 РАЗ
--------------------------------------------------------------------------------
http://www.pressa.spb.ru/newspapers/nevrem/arts/nevrem-2446-art-17.html
Клоун - самый добрый врач
--------------------------------------------------------------------------------
http://districts.pravda.ru/districts/2003/9/31/88/12145_dawn.html
Тайна 47-ой хромосомы
--------------------------------------------------------------------------------
http://www.piramida-maxima.ru/issues/2004/3/konferencijapos/medicina/sindromdaunauno.html
Исследования 2000-2002 гг.: Синдром Дауна в Удмуртии
--------------------------------------------------------------------------------
http://www.iks.ru/~soroka/ob.l.htm
"Обезъянья" складка или "синдром Дауна"
--------------------------------------------------------------------------------
http://www.aif.ru/online/health/400/08_01
Не держите пальцы «веером»
--------------------------------------------------------------------------------
http://www.down-centre.medico.ru/
Даун Центр, Санкт Петербург
--------------------------------------------------------------------------------
www.supporter.ru/lib.phtml?idr=35
Он-лайн библиотека вам в поддержку."Проблемы кормления", "Стимуляция сенсорного развития", "ПРАВА И ЛЬГОТЫ" ...
--------------------------------------------------------------------------------
http://aupam.narod.ru/zakonodatelstvo.htm
Законодательство об инвалидах и для них
--------------------------------------------------------------------------------
http://www.notabene.ru/down_syndrome/Rus/litera.htm
Синдром Дауна: Список литературы и видеофильмов
--------------------------------------------------------------------------------
www.fss.ru/site/info3.asp?id=570
Фонд Социального Страхования. Положение о порядке назначения и выплаты государственных пособий гражданам, имеющим детей
--------------------------------------------------------------------------------
http://chestyle.com/archive/zb042.php
Горести и радости. Почти не в тему, но все ж почитайте
--------------------------------------------------------------------------------
http://www.mdrr.org.ru/
Ассоциация Синдрома Дауна
--------------------------------------------------------------------------------
http://www.downsideup.org/_organisations/centers_spisok.htm
Благотворительный фонд Даунсайд Ап. Медико- психолого- социальные, реабилитационные центры, имеющие опыт работы с детьми с синдромом Дауна
--------------------------------------------------------------------------------
http://moscow.hrights.ru/deti/data/deti_31_10_2003-9.htm
"Изменить к лучшему жизнь детей с синдромом Дауна" - девиз "Даунсайд Ап". А это значит - включить их в нашу обычную жизнь.
--------------------------------------------------------------------------------
http://www.wunderkinder.narod.ru/
Вундеркиндер. В основу методических материалов положены работы Г. и Д. Доман.
--------------------------------------------------------------------------------
www.idea.dp.ua/baby/book/doman_w.zip
Книга Г. Домана «Гармоническое развитие ребёнка» в архиве.
--------------------------------------------------------------------------------
http://www.mk.ru/numbers/1412/article44659.htm
Мама для дауненка. В России впервые усыновили ребенка со страшным диагнозом
--------------------------------------------------------------------------------
http://www.mosnovosti.ru/content/view/1562
Анна небесная. Им повезло, что от них отказались родители
--------------------------------------------------------------------------------
http://www.mdrr.org.ru/ret2life/internat_p.htm
ВОЗВРАЩЕНИЕ В ЖИЗНЬ. Чтение не для развлечения
--------------------------------------------------------------------------------
www.idea.dp.ua/baby/
Детская Комната сайта Idea Software с массой полезного для родителей
--------------------------------------------------------------------------------
http://igrushka.forever.kz/
Веселая Мастерская. Как сделать игрушки своими руками
--------------------------------------------------------------------------------
http://www.danilova.ru/
Е. Данилова "Раннее развитие детей"
--------------------------------------------------------------------------------
http://www.alaskadownsyndrome.ak.org/
Alaska Chapter of the National Down Syndrome Congress
--------------------------------------------------------------------------------
http://members.shaw.ca/finkirv4/index.htm
Baby Sofia. Sofia was born August 3rd, 2002. She has Down Syndrome (DS) and was in dire need of heart surgery. She's a real lovable toughie!
--------------------------------------------------------------------------------
http://www.ndss.org/
National Down Syndrome Society, USA
--------------------------------------------------------------------------------
http://www.ds-health.com/
Down Syndrome: Health Issues - Medical Essays and Information
--------------------------------------------------------------------------------
http://www.nads.org/
National Association for Down Syndrome, USA
--------------------------------------------------------------------------------
http://www.downsyndrome.com/
Down Syndrome on the Internet (links)
--------------------------------------------------------------------------------
http://www.ndsccenter.org/
National Down Syndrome Congress, USA
--------------------------------------------------------------------------------
http://www.downsnet.com/genesee/
Down Syndrome Parent Support Group of Genesee County, Inc., USA
--------------------------------------------------------------------------------
http://ambassadors.net/archives/issue5/index_down.htm
Defeating Down Syndrome
--------------------------------------------------------------------------------
http://www.translate.ru/
Бесплатный он-лайн переводчик (в том числе и WEB страниц)
--------------------------------------------------------------------------------
http://www.nas.com/downsyn/
Understanding the gift of life
--------------------------------------------------------------------------------
http://www.downsyn.com/
Down Syndrome: For New Parents. Thomas and Michel Paul's family Web-site
--------------------------------------------------------------------------------
http://www.leeworks.net/Lee/ryan.html
13 y.o. Ryan's Web Page
--------------------------------------------------------------------------------
http://www.telebyte.com/upside/upside.html
UPSIDE! Down Syndrome Society
--------------------------------------------------------------------------------
http://www.leeworks.net/Lee/dslinks.html
Down Syndrome & other links
--------------------------------------------------------------------------------
http://www.geocities.com/Heartland/Hills/3348/dswebring.htm
Down Syndrome Web-ring
--------------------------------------------------------------------------------
http://www.unomas21.com/
Uno Mas! Down Syndrome Online. People with Down syndrome have "One More" #21 Chromosome!
--------------------------------------------------------------------------------
http://www.mosaicdownsyndrome.com/
Mosaic Down Syndrome on the Web
--------------------------------------------------------------------------------
http://www.iolky.com/down-syndrome/children/pics/index.htm
Abigail's Down Syndrome Pictures and Stories
--------------------------------------------------------------------------------
http://www.einstein-syndrome.com/house/danny_stories.htm
Down Syndrome Doesn't Stop Danny!
--------------------------------------------------------------------------------
http://www.einstein-syndrome.com/
Einstein-Syndrome: Down Syndrome with a Positive Attitude
--------------------------------------------------------------------------------
http://www.down-syndrome.info/
Down Syndrome Information Network
--------------------------------------------------------------------------------
http://www.arcwhatcom.org/down_syndrome.html
Down Syndrome Outreach
--------------------------------------------------------------------------------
http://www.dsacnc.org/
Down Syndrome Association of Charlotte, North Carolina
--------------------------------------------------------------------------------
http://home.austarnet.com.au/caradonhouse/down.htm
Down Syndrome: Increasing intelligence, improving health and abilities; Jacob's Story
--------------------------------------------------------------------------------
http://www.dsamt.org/
Down syndrome Association of Middle Tennessee
--------------------------------------------------------------------------------
http://dsrf.org/
Down Syndrome Research Foundation
--------------------------------------------------------------------------------
http://www.csdsa.org/
Colorado Springs Down Syndrome Association
--------------------------------------------------------------------------------
http://down-syndrome.de/
Study-group Down syndrome, Kirchlinteln, Germany
--------------------------------------------------------------------------------
http://www.einstein-syndrome.com/house/house.htm
Come to Our House: Ordinary Families Dealing with Down Syndrome
--------------------------------------------------------------------------------
http://www.ideallives.com/articles.php?a=read&aid=300
Toilet Training and Down Syndrome
--------------------------------------------------------------------------------
http://www.pottytrainingsolutions.com/information/index.htm
The Potty Training Help Center. Informative Articles and Information on the Subject of Potty Training
--------------------------------------------------------------------------------
http://www.tvcc.on.ca/newdocs/innovations3.html
Innovative Products and Books. Toilet Teaching with Your Special Needs Child
--------------------------------------------------------------------------------
http://www.ds-health.com/abst/pastlist.htm
Past Featured Abstracts About Down Syndrome
--------------------------------------------------------------------------------
http://www.edsa.eu/en/gb/
The European Down Syndrome Association (EDSA)
--------------------------------------------------------------------------------
--------------------------------------------------------------------------------
http://clubs.dir.bg/showthreaded.php?Board=citizeni&Number=1942493875&page=0&view=collapsed&sb=5
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http://ivanrilski.org/index.php?option=com_content&task=view&id=60&Itemid=166
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http://www.growthcharts.com/charts/DS/charts.htm
Chart for the weight and the height of children with Down syndrome from birth to 18 years of age