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How to adopt a child with down syndrome


Down Syndrome Adoption - Wide Horizons For Children

Adopting a Child Who Has Down Syndrome

If you close your eyes and picture yourself adopting a child who has Down syndrome, what do you see?

Do you see challenges ahead?

Or do you see yourself being blanketed with love?

The truth is that you will experience both of these and all places in between. But, the feeling of being blanketed with love will stand out above all else.

Down syndrome is a common genetic variation which typically delays a child’s physical, intellectual and language development. Like any child, each child who has Down syndrome has their own unique personality, skills and talents. And, like any child, those who have Down syndrome are best served by growing up within a loving family environment from as young an age as possible.

Hundreds of US families adopt a child who has Down syndrome every year. But today we need more loving families than ever — so many children who have Down syndrome are currently available for adoption.

Adopting a Child Who Has Down Syndrome Through Wide Horizons

We’ve been placing children who have Down syndrome for adoption for a number of years. Our personalized approach to adoption means that we will give you the help and information you need, when you need it.

While we work in a number of countries around the world, some have more children who have Down syndrome available for adoption than others. Right now, China has the highest number waiting to be adopted, followed by Colombia and The Philippines.

For boys who have Down syndrome, it’s much harder to find a forever family than for girls who have it. If you’re ready to open your heart to one of these boys, you’d better be ready to experience a new kind of love! Read the full story

Boys Rock That Extra Chromosome Too!

Cordelia: A New Family, a New Future

As an orphan with Down syndrome in China, Cordelia had almost no chance of being adopted. But everything changed when a teacher in Massachusetts opened her heart to adoption. Read the full story

Testimonials

In their words…

Levi is my bridge to the beauty of life where I never knew a river divided me. He is my warmth in the darkness, my laughter in the quiet, my calm to the storm. My little homie with an extra chromie has built up a voice in me to shout his worth to the world. His love for me has taught me how to really live. I am so grateful that God threw in an extra chromosome to the mix of this life and I wish more people had the blessing to be a part of it! —Gretchen Mom to Levi
I was so prepared for the hardness of adopting a child with Down syndrome, and not nearly as prepared for the daily joy and fun she has brought into our lives. —Emily T. Mother of Clara
DS adoption brought our amazing daughter into our family. She is a bright light that shines to everyone she meets. Without DS adoption we would be missing one of the greatest joys, one of the biggest blessings, slowing down and enjoying the small moments in life. We would be missing Stella. —Jenna Mom to Stella

Down Syndrome and the Option of Adoption

One in 700 babies in the United States is born with Down syndrome, the most common occurring chromosomal condition. Individuals with Down syndrome often have cognitive differences, weak muscle tone in infancy, and a characteristic facial appearance. Approximately 6,000 babies are born with Down syndrome every year in the United States.1

When a parent receives a diagnosis of Down syndrome for their child, it usually occurs before the child has been born. The expectant mom can either request a blood screen, or, depending on her age or past medical history, the doctor will request a blood screen, to screen for Down syndrome. If the screen comes back with a possible increased chance of Down syndrome, doctors will refer the mom to diagnostic testing, which will confirm a Down syndrome diagnosis.

For most families whose child receives a diagnosis of Down syndrome, there is a short period of grieving the loss of the child they thought they were going to have. After the grieving period, they celebrate their child with Down syndrome and move forward with seeking out information and support as they parent their child.

But there are some families who receive that diagnosis and determine that they are not best situated to parent a child with special needs. While they absolutely love their child, they feel there may be another parent or family more equipped and prepared to care for a child with Down syndrome.

Those families seek out the option of adoption. When a family voluntarily seeks out the option of adoption, it is considered private adoption. (Public or foster care adoption occurs after a child is removed from the home by state, county, or local child protection services, which is addressed later in this article.)

Grief Counseling and Adoption Options

When Down syndrome is confirmed and the expectant parents reach out for information on making an adoption plan, the first thing that needs to be recognized is that the expectant family will usually be in a state of grief. Before adoption should be discussed, grief counseling should occur. Many families in a state of grief are in “fight or flight” mode from the news and will need a chance to sit with someone and process that grief.

Once families have had time to process their grief, they will be ready and open to hearing more about Down syndrome. Many times, families will want to make an adoption plan based on antiquated views about Down syndrome, or they may have had a negative experience on which they are basing their decision.

It is important to provide updated, correct information on Down syndrome. You can find updated resources within your local Down syndrome support group, or at national organizations (these groups are listed in the resources section at the end of the article).

Connecting with their local parent group will also benefit the family. They will get a chance to talk with another family who has been in their shoes, and they can also see what resources are in their area that support individuals with Down syndrome and their families.

When grief support, Down syndrome education, and Down syndrome parent counseling is provided to new and expectant families, approximately half of those families decide to parent their child.

The Adoption Process

For those families who want to make an adoption plan, they will need just as much support as they navigate the special needs adoption process.

Special needs adoption is a process that is uniquely different from other adoption processes. Expectant parents and new families making an adoption plan for their child with Down syndrome will not know the difference; they are making an adoption plan consistent with other private domestic adoptions. But the differences for the prospective adoptive family and agency are as follows:

  • Adoptive families must state that they want to adopt a child with Down syndrome (or special needs) in the motivation section of their home study. If the family is motivated to adopt a child with other special needs,
    the more specific, the better. Are they motivated to adopt a child with a g-tube? Limb differences? Visual impairment? Heart issues? In need of lifelong support?
  • Home study workers must assess a family who is motivated to adopt a child with Down syndrome or special needs. What is the family’s experience with Down syndrome? How much education do they have about Down syndrome? Why do they want to adopt a child with special needs?
  • If the adoptive family seems like a great fit to adopt a child with Down syndrome, it should be specifically stated in the recommendation section of the home study.
  • When placement of a child with Down syndrome occurs, the child can receive benefits such as supplemental security income (SSI), Medicaid, and adoption assistance/subsidies. The process of applying for these benefits is made much easier if the placing agency is a nonprofit, 501(c)3 agency. These benefits are extremely valuable to the child and to their adoptive family.

Adoption from the Public Child Welfare System

When a child is removed from their home, they are first placed into a foster family. Many foster families who receive a child with Down syndrome have no experience or knowledge of Down syndrome. Providers can educate and offer support to the foster family quickly and easily:

  • Reach out to your local Down syndrome parent group. They would be happy to send someone to do a home visit, bring resources to the family, and help the family with supports and resources that the child may need.
  • Set the child up for an evaluation at your local Down syndrome medical care center. Many children with Down syndrome have specific medical needs such as heart issues, hearing loss, thyroid issues, etc. The medical center will make sure that the child has no issues related to Down syndrome, and if there are issues present, they will provide referrals to experts for treatment.
  • Be proactive. If you have adoptive families who have stated they would foster a child with Down syndrome, encourage them to join their local Down syndrome parent group so that they can get the education and community support needed if they ever receive a child in their care.

A special child is looking for a family: Down Syndrome. What parents need to know

Children with Down syndrome are special in every way. And one of their main features is an unimaginable need for love, which only relatives can give them. Without a family, these children have a very hard time, and, of course, those adoptive parents who adopt or take custody of a child with Down syndrome do not just change - they save his life. But in order for salvation to occur, it is necessary not only to decide on this step, but to go a long way after it. Not everyone can do this path, however, just as not everyone who is not confident in their abilities knows what they are really capable of. nine0004

Photo webmedinfo.ru

  1. Why Down syndrome is not a disease
  2. Other myths and stereotypes about DM
  3. How people with DM are similar
  4. Why they are “sunny children”
  5. Where do the helpless "unskillful" come from
  6. What activities do children with diabetes need
  7. How to practice at home
  8. Why a child with DS especially needs a family
  9. Can a single parent cope with the load
  10. How to develop teenagers with DM
  11. Who will grow out of him
  12. Successful people with Down syndrome
  13. History of families raising children with DM
  14. Find out more about Down syndrome and get help
  15. How to find like-minded people in your city
  16. Instead of afterword

  1. Why Down syndrome is not a disease

Down's syndrome is a genetic disorder, and calling it a "disease" is incorrect and absurd. The reason for the birth of a person with diabetes is an extra chromosome, the 47th. Normally, humans have 46 chromosomes in each cell of the body, arranged in pairs: 23 inherited from the father and 23 from the mother. And in people with Down syndrome, one of these pairs has an extra chromosome - trisomy. It is she who gives that set of physiological characteristics, because of which the child will develop differently. nine0005

Children with DM are born quite often: approximately one case in 800 newborns. They are born with the same frequency in all countries of the world, among people of different nationalities and social status, regardless of ecology and climate. So there is no “guilt” in the birth of such a child, and scientists still have not figured out what causes this “genetic anomaly”.

People with Down syndrome are not sick. And if someone has an opinion that "down" can be cured - this is complete absurdity. A syndrome is a set of features that a person has. This can only be called a “failure of nature”, “abnormal development”, but, probably, it is not necessary. After all, normal is a relative term. nine0005

One of the criteria of the norm is what the majority has. Well, yes, most people have 46 chromosomes, people with DS have a different number. And in this they differ from all mankind. But perhaps this is such a genetic turn - as if, in addition to the existing four blood types, some fifth blood type was found in several hundred thousand people? Would these people also be considered abnormal? So you have to be more careful with the concept of the norm: for example, there are areas where smokers are the majority. Does this mean that those who do not smoke are abnormal? nine0005

According to the online encyclopedia of human biology, people with Down syndrome are much more likely to suffer from:
- cardiac diseases (usually congenital heart defects)
- Alzheimer's disease
- acute myeloid leukemia.
People with Down's syndrome have weakened immunity, so children (especially at an early age) often get pneumonia, have a hard time with childhood infections, they often have digestive disorders, and vitamin deficiency is pronounced. nine0010

  1. Other myths and stereotypes about DM

There are still many prejudices and misconceptions about people with Down syndrome in Russia. About 30 years ago, it was believed that kids with DM were “not amenable to learning” - the degree of mental retardation was too severe. Until now, some citizens, even medical specialists, are confident that children with Down syndrome always grow up to be happy, cheerful and carefree "vegetables". In the old fashioned way, they, without exception, are also credited with the opposite qualities: aggression, stubbornness and disinhibition. There is no truth in any of the opinions. nine0005

First, most children with DS can learn to walk, talk, read, write, take care of themselves, attend school and even sports. In general, they will be able to do everything that other children can, if they are provided with the right environment and development program. Their intelligence in most cases allows them to achieve this. But there is still a developmental lag in children with DM - it is completely different in each case: from minor to moderate and severe.

Secondly, children with Down syndrome are not the same. Each of them is an individual, like any person on Earth. A person with Down syndrome, like everyone else, has its own advantages and disadvantages, habits and preferences, hobbies and interests. Each of them has its own character and temperament. nine0005

Of course, it can be said that the 47th chromosome influenced the appearance, making all people with SD similar - the proportions of the skull, low ears, slanting eyes. But to the same extent, the Japanese are all similar to us, and only then it turns out that they are still different. Similarly, children with SD are different when we get to know them a little better.

Alina Vakhlakova, curator of the Sunny Children project of the Different Children Charitable Foundation:

“Each child with Down syndrome is unique. There are children with a bunch of concomitant diseases, and they need daily procedures 5 times a day, there are children who need several heart surgeries. Someone has problems with vision or hearing, someone has neurology, someone has organic damage. And there are children who cannot be distinguished from their peers. It is necessary to take a specific child and look. Therefore, there is only one advice to parents: if you can take a special child, then take it, and with a specific child you will draw up a development program, individually. And most importantly - to believe in him, he can do anything. nine0010

  1. How people with DM are similar

People with Down's Syndrome have characteristics that unite them. For example, appearance features: a flat back of the head and a flat face, a wide bridge of the nose, a protruding lower jaw, a low position and underdevelopment of the ears, a skin fold on the neck, eyes of a special shape with a raised outer angle. These external signs are detected immediately after the birth of the child, but the diagnosis of "Down's syndrome" can only be made by a geneticist, after a blood test confirming the presence of the 47th chromosome. nine0005

In addition, children with diabetes have reduced muscle tone throughout the body, and therefore they are very soft, a little loose. And this is such a feature of them that must be corrected - a lot of work with their physical development.

The concomitant disease of many children with Down syndrome is a heart disease, and everyone should know this. Hearing loss is very common in children with DS. Not for everyone, but for many, and you also need to know this in order to be sure to check. These children love to eat and are prone to obesity. And you also need to know this, because if a child eats uncontrollably, then a fat person will grow out of him. All these features must be understood and monitored as risks in order to successfully avoid them. nine0005

The fact that the child will have some kind of mental retardation is most likely a fact. Impairment of intellectual development is most often one of the signs of Down syndrome. But this is not a sentence yet, because the more you invest in this child initially, the more you can get back.

In communicating with other people, in serving themselves, in organizing their living space, people with SD can do everything. And if they are taught this, then others will accept them with joy, others will be interested in communicating with them, and this is an important factor. nine0005

According to the Downside Up Center, the following external signs most often accompany Down syndrome (but the diagnosis is not possible only on the basis of external signs; a blood test for a karyotype is necessary for accurate diagnosis):

“Flat face” - 90 %
Brachycephaly (abnormal shortening of the skull) - 81 %
skin fold on the neck of newborns - 81 %
Epicanthus (vertical skin fold that covers the medial angle of the eye gap) - 80 % nine0010
Hypervility of the joints - 80 %
Muscle hypotension - 80 %
flat nape - 78 %
short limbs - 70 %
brachimezophalange (shortening of all fingers due
cataract over the age of 8 years - 66%
open mouth (due to low muscle tone and special structure of the palate) - 65%
dental anomalies - 65%
Cleanodactyls of the 5th finger (curved little finger)-60 %
Arc-shaped palate-58 %
Flat strip-52 %
Borous tongue-50 %
transverse palmar fold (also called Monkey Monkey "") - 45%
short wide neck - 45%
CHD (congenital heart disease) - 40%
short nose - 40%
strabismus -
%
Deformation of the chest, keel -shaped or funnel -shaped - 27 %
Pigment spots along the edge of the iris = Brushfield stains - 19 %
Episindrome - 8 %
stenosis or atresia of duodenum - 8 % 9000 9000 9000 9000 9000 9000 9000 9000 9 leukemia - 8%.

Illustration vse-pro-geny.ru

  1. Why they are “sunny children”

Children with Down syndrome are very warm emotionally. They are all very open, naive, touching. "Sunny children" are talking about them, and this is no accident - they have such a feature. They are absolutely open to the whole world. nine0005

All psychologists say that trust in the world is the first thing that any person needs to acquire after he is born. And children with SD are initially born with trust in this world. They are contact, smile at everyone, and are glad to any other person already in the fact of his existence. Nature or God rewarded them with what we lack so much in today's society.

Svetlana Andreeva, Deputy Director of an educational organization for children with severe multiple developmental disorders:

« These are good children, they are wonderful. With a general lack of openness, goodwill in our society, they are an absolutely sincere expression of joy only about the fact that you see this person and love him, of course, simply because he is a person. These children make up for the lack of what the so-called "normal" people lack.

A young man with Down's syndrome studied with us, he was already 15 years old, and when he entered school, he always said: "Hello, I've arrived!" There was no doubt in his mind that he was not welcome. And he is happy with everyone - here I am, take me, I'm here! You can, of course, see another side in this - a kind of egocentrism: they say, come on, admire me. But I see something else in this: he has such an unspoiled perception of all the good things that are in this world, and he does not need to be spoiled. nine0010

Parents who take such a person into the family will receive a lot of joy, but they should be ready to give him a lot of emotional warmth. But in no case should they just look and rejoice. In no case should you be touched by such children. Because if we only look at them and be touched, we will harm them terribly: “What a pretty, cute you are, let me hug you, kiss you - I will rejoice at everything that you give me here!” These are the children whose characteristics require a lot of work with them. The parents of such a child should teach him and demand a lot from him. There shouldn't be any discounts at all. Only then will he live well.” nine0010

  1. Where do the helpless "unskillful" come from

It is very important not to succumb to this first feeling of charm, emotion - just live and enjoy such a wonderful bright little man. In this case, we are more likely to harm a child with Down syndrome - he will be completely helpless. And while the child is small, it will be touching, but when he becomes big, but unable to do anything, it will no longer be a touching picture.

Therefore, the "recipe" for the development of children with Down syndrome is simple: they must be loved, but also demanded to the fullest. Demand, develop, teach, and in no case regret. And to pull up to the level of peers. nine0005

  1. What activities do children with diabetes need

Children with DS usually need at least 8 lessons per month on early development from birth with specialist teachers. Of course, first you need to undergo an independent examination, and according to its results, register with specialists who will tell you what specific procedures and classes are needed.

From the age of two, as a rule, you need to involve a speech therapist, from three - to engage in physical development and coordination, from five - to work with cognitive functions and prepare for school. And in parallel with all this, the child needs to be socialized: talk a lot, take it with you everywhere, praise and encourage success. You have to work constantly. nine0005

While the child is small, one should immediately begin gymnastics, physical therapy. Massages are needed to bring relaxed muscles into tone. Nothing special - after all, all parents try to enroll a small child to a massage therapist or exercise therapy. Only here it is shown constantly, throughout life - so that a person is dexterous, coordinated and enduring.

It is imperative to engage in the development of speech. Many parents believe that the “downyat” tongue sticks out only because it is enlarged and does not fit in the mouth. Yes, it looks ugly. But if you work with speech, then the tongue will return to the mouth. But you need to start on time: the development of speech is the time of early childhood. nine0005

And all people with mental disabilities have spontaneous learning - this is when you, without noticing it, learn through what you saw and spied. But a child with Down syndrome must be taught everything through directed learning. If almost everything seems simple and understandable to us, it almost never happens with them. What is simple and understandable to us is not simple and incomprehensible to them. And therefore, with a child with SD, it will be necessary to deal with it at home as well.

Olga Semenkova, teacher-psychologist of the early intervention department:

“As a rule, children with DS have low muscle tone, and this interferes with the formation of the motor sphere. Therefore, initially it is necessary to make a lot of effort to help the child sit down, crawl, learn to roll over.

In addition, they have increased mobility of the joints, it is often difficult for them to kneel, on the handles. Therefore, everything that a parent can give in terms of providing a child with stability must be compensated for in this nuance. nine0010

It is necessary to constantly be in contact with the child, because these children cannot independently get acquainted with the outside world. They need to be picked up, constantly talking, paying attention to specific objects or parts of them, paying a lot of attention to this. We must constantly speak: with a decrease or increase in tone, from different angles. You have to listen to music. Much depends on tactile touches. A child with SD especially needs constant touching of the body in different places, stroking, light massage elements. This is necessary so that the child can correctly feel his own body - for a start, and then get acquainted with what surrounds him. nine0010

These children are also very good at imitating, and this can be emphasized in your interaction with the child. What an ordinary child has seen and adopted in life himself, a child with SD will not see and master on his own, but often he will easily repeat what mom or dad will show several times. And based on this desire to imitate, on the fact that these children, as a rule, are very diligent, all this gives a certain chance to advance in development a little faster, as parents would like. nine0010

7. How to study at home

A child with Down's syndrome will have to be attended to for hours - all the available time. As soon as he wakes up in the morning, the process has begun - all his regime moments must be used for training. The baby must be taken to the toilet (we learn to sit on the toilet, press the button to drain the water, pull on the pants). Then he goes to the bathroom and here he learns to turn on the light, and not his mother does it for him. Then he himself learns to turn all these taps in the bathroom and turn on and then adjust the warm water. And then he will pick up soap, but it is slippery - and will fall. But the mother should not soap his hands: she, having shown several times, will patiently wait until the child does it himself. And he will also brush his teeth, making it better every day. And so - thousands of household trifles: to wash, dry, dress, etc. nine0005

The trouble for many parents is that when they see that the child is not oriented well, they do everything themselves - it's much faster and easier.


Of course, one must do without fanaticism in these activities, otherwise the child will quickly get bored with them. It is necessary to alternate and regulate the load. Today, for example, we practice turning off the light, tomorrow we learn to open a tap, wipe our hands, and so on - all step by step. The smaller the step, the faster the learning process. We divide any activity into actions, we divide any action into operations. nine0005

Children with DS are happy to cooperate in such activities - they are very emotional and joyful kids. And if you deal with them like that from the very beginning, then it will simply be an integral part of his life. In addition, you should not do everything only as tasks - this will not be interesting for any child.

You have to play with a child - not just bend and unbend his leg, but come up with a game, say something at the same time, and even rhythmically and rhymingly. So he will also develop speech. nine0005

Olga Semenkova, teacher-psychologist of the early intervention department:

“The developmental dynamics of these children depends on the severity of the injury. Children under 3-4 years of age usually develop slowly, especially motor and mental functions lag behind.

Of course, it is difficult for any parent not to see high-quality rapid results in the development of their child. But here it is important to understand that this is a feature of the development of these children. And after 4-5 years, activity increases somewhat, and with painstaking work to acquire motor skills and mental functions, there will be fewer difficulties, the child will come to the time when he can use what he can, and then the development process will give more noticeable results. . nine0010

In order to acquire this basic experience, one needs to expend a lot of effort on endless communication, the predominance of positive emotions, and offers to examine objects of life together with an adult. And from these objects it is necessary to isolate those, the interaction with which will bring joy to the child, those that make it possible to use another object.

And in this way, building up the work in very small, slow steps, taking into account the characteristics of your baby, tuning him to an emotional positive note, and not leaving him alone with the outside world, you can achieve certain results. Of course, every parent wants his own - someone needs super achievements in their studies, and someone wants the child to be socialized as much as possible. This is the right to choose parents - which is a priority for them. nine0010

Pablo Pineda - Europe's first person with Down's syndrome, graduate, teacher. Photo neinvalid.ru

  1. Why a child with DS especially needs a family

These children cannot live without emotional warmth and emotional intimacy. And, of course, nowhere, except in the family, they will not be able to receive this warmth, this intimacy and love in full. Therefore, any other variant of education for a person with Down syndrome is not at all suitable. Without any exaggeration. They really need all the empathic things - both verbal and physical contact. These are the people who will simply wither and weaken in an emotional void. nine0005

We are all very different. There are introverts among us and there are misanthropes. And for people with SD, the main aspect of life is definitely emotions. Therefore, such children really need such close people, and such a level of contact at which they can realize this emotional side of theirs. Without this, they simply cannot - they will go out, or they may die, there are as many such cases as you like.

Olga Nikolashina, pediatrician, neurologist of the regional orphanage:

nine0002 “The first thing we encountered when we began to observe orphans with DM: they are very responsive to affection, such contact is important to them. Another feature is that you may not immediately see the emotional return. Children deprived of parental attention seem to be in their own world - they do not respond to the name, they can play with their own hands or only with a certain toy. But this does not mean that the child does not react in any way to the people around him. If the same caregiver works with a child, there is a surprisingly positive trend.” nine0010

  1. Can a single parent cope with the load

Of course, it is better when there are two parents in the family. And even better - when there are grandmothers, grandfathers, sisters and brothers. This is a big problem, but it applies not only to parents of children with Down syndrome, but in principle to any parent. Although to the parent of a special child - to a greater extent.

Only a very strong mother can cope with raising a child with DS alone. If you can isolate yourself from an ordinary child at least for a while, passing him on to relatives, and at school age you can calmly leave him alone at home, going, for example, to the store, then it is more difficult with a child with SD, most often you need to be with him constantly. . Therefore, the onset of the so-called "burnout" - sooner or later - is almost inevitable. But even with “burnout” you can work, best of all - ahead of the curve. nine0005

Should a single mother give up the idea of ​​taking a child with Down syndrome? Such a responsible decision must be made jointly with specialists - first of all, those psychologists and teachers who are ready to accompany the family: to advise, help under all circumstances - full-time and non-staff. Opportunities often depend not only on their own resources (including fortitude), but also on the external environment. For example, if a family lives far from a major city, then there is likely to be no place for a child with DS either in kindergarten or at school, although by law they should be. nine0005

And if we talk about “burnout”, then one of the factors that compensates for this phenomenon is the energy that a parent receives from a child with Down syndrome. When this amazing little man looks at his mom or dad with absolute adoration and love and, without being embarrassed or embarrassed (as happens with many), confesses his love, while saying a lot of good words - this is an explosion of positive emotions that brings peace of mind: everything strength returns.

10. How to develop teenagers with DM

There should be many rules for older children with DS. After all, they are often such sybarites: they like to get comfortable in a chair and do nothing. We all love it when we are taken care of and the dust particles are blown away, and we often use it, and these children shamelessly use it. Of course, all this sybaritism is permissible - why not? But only when the person is still working. Therefore, those children with Down syndrome who show frank laziness should not be spared in any case.

But it's not worth pushing either - you need to do everything through an emotional response: joyfully, together. And the child will go - they all go and easily learn the right things. The main thing for the parent to remember is that you don’t have to lean right away - you need to learn step by step, in small portions. And of course - only on positive emotions. nine0005

On the other hand, these children must also know the limitations: "You can't, you just did something bad. " All this - all moral things - are absolutely accessible to both children and adults with Down syndrome. And this must be used in their development, training and education.

What happens to a child with DS when he grows up? We all have ideas about a child at all his age stages - how a baby behaves and looks, how a teenager behaves and looks. First of all, it is the style of communication. You can still somehow lisp with the baby, but if we have a teenager in front of us, then we will speak with him in a different language and even in different intonations, and make other arguments. nine0005

Secondly, clothing is also an important point. Often, for parents, children with mental disabilities remain babies all their lives, and therefore a cap with strings can linger on the head of a teenager until adulthood. Clothing should simply be age-appropriate - shorts should not be worn at 14 years old.

Thirdly, this is all his surroundings: the developing environment, the space around. Children with DS, of course, are all very different, and their level of development is varied. However, the development environment must still correspond to the passport age. If there is an opportunity to attend a special school or study according to a special program in a public school, you must attend these classes. nine0005

A boy must not drive cars if he is 15 years old. If earlier he shifted cubes from box to box, then now he must shift bolts and nuts. And he should not flip through fairy tales about Kolobok, but magazines about motor vehicles.

Parents need to take care of all this - a growing child with DS, most likely, cannot orient himself in this. However, if the child was engaged, then by the teenage years he will reach a completely different level, far from wishing only to collect a pyramid in shape, color and size. nine0005

11. Who will grow out of him

If you work with a child with Down syndrome, then, with rare exceptions, he will go very well through the stages of his development. These children are quite teachable: they read, they write. And they are incredibly plastic. By the way, this "weakness" of theirs may well be their strength - there are many theater studios, "special theaters" in which children with SD play and give out such plasticity that the audience watches with bated breath. After all, if the child was engaged, then some clumsiness inherent in people with SD levels out, and unimaginable flexibility comes to replace it. nine0005

Yes, in order for a child with Down syndrome to “turn into a beautiful swan” by adulthood, you need to invest a lot in him and do very, very, very much. There are many examples when adolescents or adults with SD, standing side by side and even looking similar in appearance, are completely different in their level of development. One is a completely fit person, with good speech (even if it is a little blurry, but everything is clear - he builds phrases superbly).

And next to him stands another - a fat rotten, who, being already in his youth, either does not speak at all, or utters only slurred separate words. Who is absolutely helpless in everyday life, although he seems to be able to do everything - his arms and legs work. nine0005

When you see this, it becomes clear that the parents did a lot of work with one child, but not with the other. And it is very unfortunate that everything turned out this way, because every child with Down syndrome has potential. But whether it will be used or not depends on who will be next to it.

Children with DS are amazing imitators and their environment greatly influences their development. If a child sees his dad giving his mom a coat, be sure: he will always give a coat. If he sees that women are moving a chair, be sure: the chair will be moved. nine0005

A person should be pleasant in communication - this is one of the keys to success. And for a child with Down syndrome, this is especially important. And if he is well brought up - and these children can be well brought up - then, just like any child, they will be just a person with whom everyone wants to associate. And this is one of the important factors in our life.

Svetlana Andreeva, Deputy Director of an educational organization for children with severe multiple developmental disorders:

« Last year a young man with Down syndrome graduated from our school. At the age of 18, he could do a lot: read, write, speak. He had a slightly slurred speech, but absolutely understandable to any outsider - he built sentences, phrases, texts. He went to work in craft workshops and now works in a shop there. He is interesting, it is interesting to communicate with him, making, of course, a discount for a somewhat naive perception of the world. It's like with children, whose inner world is absolutely serious, although at the same time an adult understands from his height that this is not so. But he takes this world seriously, realizing how important it is for the child, what it is for him for real. So for this 18-year-old man - everything is real, although naive, and not quite relevant to the big real world. nine0010

12. Successful people with Down syndrome

Adults with Down Syndrome are capable of many things. They can be film actors, composers, athletes, restaurateurs, and even lawyers and teachers. People with Down Syndrome even have their own day - it is celebrated annually on March 21 (the 21st “triple chromosome” is March 21).

On the website of the Snob project on this day in 2014, a wonderful selection of “8 successful people with Down syndrome” was published. And Channel One gave an excellent story in the Vremya program about Pablo Pineda, a Spaniard with diabetes syndrome who became a famous film actor and TV presenter. For those who are interested in cinematography, the site of the Solar Children organization has prepared a whole collection of films featuring people with Down syndrome. nine0005

The life expectancy of adults with Down syndrome has increased - today it is more than 50 years (in the 1980s it was barely 25 years). Many people with Down syndrome marry, however, most men with Down syndrome are infertile.

13. Stories of families raising children with DM

There are more and more families raising a child with Down syndrome in Russia - the attitude towards “sunny children” and their potential among doctors, teachers and the whole society is gradually changing. There are also celebrities among babies with SD, for example, the son of actress Evelina Bledans, his Twitter is read by over 17 thousand people. nine0005

But the most touching and sincere of all are the true stories of families who adopted children with Down syndrome from state institutions, who gave hope for a happy future.

Families who gave these children not only the warmth of the hearth, all-encompassing love and boundless care, but also, in fact, saved their lives. One of these stories is the Aleshin family, which was told by Channel One.

14. Where else to learn about Down syndrome and get help

One of the most reputable organizations in Russia, the Downside Up Charitable Foundation, provides free support to families raising children with Down syndrome from birth to 7 years of age. The Foundation provides psychological assistance, conducts pedagogical consultations, sends out methodological literature, and also positively influences the attitude of society towards people with disabilities.

A huge selection of various materials and links - on the website of the charity foundation "Different Children", as well as on the presentation site about Down syndrome. And in the “Library” section of the “Special Children” project there is a mass of qualified literature and articles, which will only be replenished every day. nine0005

Finally, on the website of the organization from Yekaterinburg "Sunny Children" - a large collection of video lessons for parents, and just video reports about various activities and achievements of children with Down syndrome.

15. How to find like-minded people in your city

First of all, it is worth using the table prepared by the Change One Life Foundation. It contains data on all organizations that provide assistance to parents raising a child with Down Syndrome in different regions of Russia. This table will be constantly supplemented and edited, today it looks like this (last updated - February 2015):
DOWNLOAD TABLE

It would also be useful to study the database of organizations in the Russian Federation on the Special Childhood website.

Some regional organizations have their own websites - a real treasure trove of useful information and practical experience:

  • Sverdlovsk Regional Public Organization "Sunny Children"
  • Moscow regional public organization "Time of Change"
  • Center for Curative Pedagogics and Differentiated Education, Pskov Region
  • Vladimir Regional Public Organization "Association of Parents of Disabled Children LIGHT"

It is necessary to communicate and ask for help: not only for the sake of saving one's strength, but for the sake of the development of the child and his well-being. And also for the sake of constantly searching for new solutions, updating knowledge and obtaining new motives for moving forward, despite all the difficulties. Large forums on the Internet, such as the Forum of Parents Raising Children with Down Syndrome, will also help in this.

nine0002 16. Instead of afterword

When a child is born in a family who is diagnosed with an alarming diagnosis - Down syndrome (DS), what happened often seems to parents an irreparable misfortune. In desperation, some parents make a “convenient decision,” for which they later sometimes regret for the rest of their lives: to give their child to the upbringing of the state. From hospitals, children with developmental disorders usually end up in specialized children's homes, where, of course, wonderful people work, who know that there are no hopeless situations, and that the more difficult the condition of the baby, the more he needs development and education. nine0005

Together with children with DS, specialists make small and big victories, experiencing those moments of happiness that the parents of the baby could experience if they realized in time: the sun did not fade, but only temporarily went behind the clouds. But the choice was made, and the child is doomed to be raised outside the family - in the orphanage, and then in various boarding schools, until the end of his life. And without parental love, for which there is no “substitute”, the development of a child with Down syndrome is inevitably limited, and the condition worsens, often catastrophically. nine0005

The only chance for such a child to change his fate for the better is to get into a family, to new parents. Of course, most adoptive parents and guardians dream of raising and developing a healthy baby. But in modern Russia there are more and more often those who are ready for the sake of a happy future child to embark on the path of love and courage, which will fill life with a new high meaning. The main thing is that something else important is not lost behind this pathos - work, everyday and hourly.

Only the painstaking work of parents, multiplied by love and self-control, will help a child with Down syndrome grow up as a person adapted to life, who will find his place in the world. A person with whom it will be interesting to communicate, and who will be useful to this world. And then he, too, will feel good and comfortable in society. nine0005

We really want all children - both special and ordinary, regardless of the number of chromosomes and the presence of diagnoses - to live in a family. But, unfortunately, it is precisely those children who especially need our support that have not yet found the best parents in the world. We believe that their dreams will soon come true, and we will try to help them in this by answering any of your questions about people with Down syndrome. If you have something to ask, be sure to write: [email protected].

Our database contains video profiles of children with Down syndrome who really need a family. Here are some of them:

changeonelife. ru portal - the largest resource on the topic of family arrangements, which every day helps thousands of people get important information about foster parenting. nine0005

Parents read expert materials, learn about the experiences of other families and share their knowledge, find children in the database of video profiles. Volunteers disseminate information about children in need of a family.

If you think the work of the portal is important, please support it!

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Mother of 6 children with Down syndrome: I used to consider myself a patient person

Nine years ago a friend asked Lea Spring to fly with her to Bulgaria – where she was supposed to pick up her adopted child. The boarding schools that the woman saw shocked her. Lea could not forget this and adopted 5 children - each of them has Down's syndrome.

Leah Spring is a foster mother of five children with Down syndrome. She is raising her natural daughter Angela (22) and adopted children Axel (18), Abel (15), Asher (14), Amos (14) and Audrey (14). Lea is also the legal guardian of Roman (15), who has fetal alcohol syndrome and Tourette syndrome. nine0005

No one cries in a room full of cots

Her story began in 2010 when a friend who decided to adopt a child from Bulgaria asked her to come with her. Lea was horrified to see the conditions in which disabled children live in state institutions.

“When you walk into this facility and see with your own eyes children who are being neglected and just “stockpiled”—when you see a room full of cribs with no one crying—you can’t walk past,” says Lea. nine0005

When she returned, Leah and Dean realized they had to adopt a child. Because of their age (Lea was 43 and Dean was 53) they decided it shouldn't be a baby. The couple was inspired by Lea's youngest daughter, Angela, who was born with Down syndrome. “I imagined that she lives in these conditions, and could not even realize it. How can this be? How can this happen today? Leah explains.

In December 2010, Lea flew to Serbia, where she met her son Axel, who was 10 years old. The boy lived in a foster family, and the woman was able to get to know his temporary family and blood parents. nine0005

“He loves everyone, takes care of everyone. When I was treated for cancer and returned home after chemotherapy, he covered me with a blanket and asked if I wanted water, ”says his foster mother about Axel, who is already 18.

A year later, seven-year-old Asher appeared in the family, who spent his whole life in an orphanage and was subjected to violence there.

Lea with Axel and Asher. Photo: Pioneer Press / Jean Pieri

“He clung to everyone - it was his way to survive in the orphanage. He was confined to his room and could only go outside if he hung on to someone. Therefore, as soon as someone entered the room - a teacher (as a rule, they sat in rooms without teachers) or a cleaning lady - he hung on them, ”says Leah and adds that all her adopted children had their own ways to survive. nine0005

Never left the boarding school and never drove a car

In April 2013, together with Dean, they again flew to Serbia to pick up ten-year-old Abel. “The Serbian authorities told us that they had never before shown his file to other families. But they knew us well and decided that we could deal with his behavior,” says the woman.

A week later, the boy was to be transferred to an adult institution, which was known for its neglect and cruelty to the inmates. Lea realized that she could not leave the boy there. nine0005

Abel is now part of the family. Most of all, he likes treadmills - as a reward, the guy is allowed to run a couple of miles at school and at home in the evening. He explains that he feels faster and stronger while running.

Abel

But the first days with a new family member were not easy for everyone. Lea admits that his adaptation was the most difficult.

“When Abel first came to our house, it was really difficult,” she says. “Abel has never been in a car before, he has never been outside the boarding school.” nine0004

In March 2014, nine-year-old Audrey was born into the family. From birth, the girl lived in an orphanage, where no one was involved in her development, and only six months before meeting with Lea, she was temporarily taken in by a foster family.

Audrey

Until now, Audrey's favorite thing is a towel. “I think the bedding was the only thing in the orphanage that she could play with,” Lea explains. “For Christmas and birthdays, we give Audrey different colored towels, with different textures, and she carefully checks them. In her room there is a large basket full of towels of all kinds." nine0005

After the adoption of Audrey, the family was touched by terrible news - Leah was diagnosed with breast cancer. In April, she underwent her first operation, and in May, chemotherapy began. When the health problems were resolved, Leah received a call and was asked to take on the fifth child, Amos.

The boy was adopted from Ukraine, but now his family was in crisis. Amos lived with Lea and Dean for several weeks, and then his parents called again - and asked to leave the boy forever. In May 2015, he finally became part of the family. nine0005

Lea and Amos

The last child, Roman, was adopted by Lea's friend. She lives in a rural area and does not have access to good doctors and special education. Lea and Dean asked to take the boy in so that he could study at school and receive the medical care he needs. “He is only under care and often communicates with his family,” says Lea about him.

Roman has fetal alcohol syndrome and Tourette syndrome. Lea reveals that Roman is aware of his problems and is therefore not very sure of himself. At the same time, he is very caring. “I have never met a teenager who takes out the trash without being reminded,” says Lea. nine0005

Lea and Roman

Why did you name all the children with the letter "A"?

The most common question Leah and Dean get asked is “Why do all your kids' names start with the letter A?” Lea jokes that after their first three children, they decided that the rest of them would feel left out if their name started with a different letter.

Another more serious question: "What do you get from adopting children?" “We watch children grow and learn. We shouldn't expect more,” Lea replies. nine0004

For the third one, they themselves cannot answer. To the question “Does it upset you that your children will never become independent”, Lea and Dean initially answer unequivocally “No”. “A small part of me is upset because I know they are capable of living on their own. But due to their previous history, this is not possible,” adds Lea.

“We are just parents,” a woman says of her family. We have the opportunity to see really cool events. We see children who have never seen a refrigerator full of food and make this discovery. We see how a child who lacks communication understands that if he asks for something, he will receive it. nine0005

Photo: www.real-fix.com

According to the woman, the adoption of five children gave her patience. “I think I have become a much more patient parent than I used to be. I used to consider myself a patient person, but I didn’t really know what it was,” says Leah and adds: “Now I know.”

For people who also want to take children into the family, the woman advises first of all to sort out their own motives.

“It's a good thing, but people should never go for adoption for themselves,” she says. “I want to adopt to feel good” is the wrong reason.” nine0004

“You are going for adoption because there is a child who needs a family. If you have the space, if you have the time, if you have the opportunity, if you have the resources, then you do it.

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