How to raise a child with Down syndrome: the experience of the Ukrainian family in the United States

Ukrainian Mariana Tenenica, who lives in Charlotte, North Carolina, was shocked when her second son was born with Down Syndrome. Neither she nor her husband felt ready for such an ordeal. However, in the United States, a system of support has been established for families in which children with special needs grow up, this has helped them adapt to new roles and begin to look for resources for the development of their son.

A journalist talked with Mariana VOA Alina Golinata-Slota found out what it was like to raise children with Down syndrome.

Last year, the family adopted a girl with Down syndrome from an orphanage in Odessa and now has three children: Eric (8,5 years), Philip (4,5 years) and Elsie (20 months).

Alina Golinata-Slota: How did you feel when Phillipp was born?

Mariana Tenenik:

“We were really looking forward to our baby, all the tests and ultrasound were perfect. He was born three weeks early. As soon as I took him in my arms and our eyes met, I realized that he had Down syndrome. Although she couldn’t say anything. On the fourth day, they did an analysis and confirmed the syndrome.

I won’t say that I didn’t know anything about it, since life seemed to be preparing me for this: I knew three people with this syndrome of various stages even earlier in Ukraine. But, like everyone else, I did not think that it would happen to me. However, after the birth of Philip, I really began to look at the world with different eyes. I calmly react if the children do not behave quite adequately, but earlier they did not understand how parents can tolerate it.

Life changes - and only for the better. We found many families from Ukraine, Russia and Europe in which children have an extra chromosome, we communicate and exchange gifts on holidays. I’m even glad that God gave us a special child, because those people who surround us can change their vision of disabled children and their attitude towards them.

A.G.-S .: When and why did you decide to adopt a child?

M. T.:

“When, after Philip’s birth, I found out that a very large percentage of such children are left in maternity hospitals only because of the syndrome, I simply stopped sleeping, it tormented me. My husband supported me, and in 2015 we started taking adoption courses at a local center, but since there are almost no abandoned children here, we closed our contract and started working with a Ukrainian adoption agency.

A.G.-S .: How did you choose Elsie?

M. T.:

— On the agency’s website there is only one photo and minimal information about each child. The broker sent us a photo of Elsie and wrote: “I think this baby is perfect for you.” When I looked, I no longer had any questions. I immediately realized that this was our child - the connection between us was so strong. When we arrived and saw her for the first time, she hugged me so much... She hugged me so tightly that I said - that’s for sure, now nothing can separate us, and we will do everything to take her as soon as possible.

A.G.-S .: How is the adoption process?

M. T.:

- First you come and sign the papers. You already know which child you are taking, but you must look at him and confirm your decision. After this, the process of preparing for trial begins. You are coming to the court hearing for the second time. After the court decision, the child is issued a passport, then at the embassy he undergoes a medical examination and receives a visa. Our first trip lasted a week, the second - a month. After the trial, there are 10 appeal days when the child is allowed to visit, but cannot be taken away. On the 11th day, we took Elsie home, where we lived, and on September 9, 2017 we brought her to the USA.

A.G.-S .: What kind of therapy and medical services do children with Down syndrome need and who pays for them?

M. T.:

— For children with special needs, the state covers all medical services and therapy, everything that they need and is prescribed by a doctor. When such a child is born, the hospital immediately provides you with all the information. In addition, they inform a special office that such a child has been born, and they call you immediately—in a week or two—and ask what you need.

Until the age of three, there is an early intervention program that provides various types of therapy - physical, play, occupational, language. Once every few months, therapists come and assess the child’s level and progress. From the age of three they send the child to school.

Until he was a year old, Phillip only had play therapy. The therapist came to our house, played with him, taught him how to use toys. When my son was almost a year old, she asked if there were other types of therapy - it turned out that I had not been informed. She suggested where to go and we received other services. The classes were also individual, but this time we went to the center.

A.G.-S .: And in school, Phillippe is in a classroom where there are only children with special needs?

M. T.:

— There are ten children in his class. Two of them are completely healthy. The state pays parents who want to send their child to such a class so that they can be a model, a role model that children with special needs can look up to. There is one teacher and two educators for the whole class. In addition, if the child is in a wheelchair, an assistant is always with him.

A.G.-S .: Did you have the opportunity to see how they have classes?

M. T.:

“I wasn’t there all day, but I went to lunch and helped during quiet time.” Each child has individual therapeutic sessions at school, depending on what they have been prescribed. They are taught by individual teachers. They also study, go to the gym, play music - at a level they can understand. They are also taken to lunch, and the children are much more disciplined than at home. Although many of them do not speak, they know the rules. In general, this is very difficult for teachers.

A.G.-S .: Other than therapy at school, does Phillip have any other classes?

M. T.:

- No, at school he receives all the necessary therapy. You can receive it at school or outside of school - insurance covers one or the other. I think that's enough for him.

A.G.-S .: Do you participate in play meetings with other children with special needs?

M. T.:

— We used to go to gymnastics. It was on a voluntary basis - parents gathered, the teacher taught the children, and they had fun. There were several children with Down syndrome. Now Phillippe is at an age where he can't do it yet, so we don't go anywhere.

A.G.-S .: How are Elsie and Philip different and how similar?

M. T.:

- These are two different children. She is calm, he is faster. Elsie spent a year in an orphanage. I learned a lot there. For example, falling asleep on your own. She doesn't like to be rocked, she wants to be held, but she doesn't even know how to sit in her arms because she's not used to it. Phillippe wasn't always quick either. Elsie doesn't walk yet, but she tries very hard to be active and wants to learn something new.

A.G.-S .: What is the relationship between children among themselves?

M. T.:

— Phillippe and Elsie have not yet found a common language, but Eric and Elsie are friends, she loves him very much! When he took her in his arms at the orphanage, she snuggled and they immediately struck up a friendship. Eric is very supportive of her. So we came to school for lunch, and he said: “This is my sister,” and kisses and hugs her.

Erik and Fill are fighting and reconciling, but when they play with other children, Erik explains to them that Phillip has the syndrome and he can't do it, so let's go slower or tidier. Protects. Explains.

A.G.-S .: What are the additional efforts that need to be made when raising a child with special needs, compared with a healthy child?

M. T.:

“We were waiting for the birth of both of our children, we both wanted to. However, when Phillip was born, there was shock, pain, surprise. It's like when you order something online and expect to like this beautiful dress, but what you get is not what you ordered at all. Disappointment sets in - you can't give it back, you have to go with what you've been given. I think a lot depends on whether you accept it, come to terms with it and look for the best you can do for this child. It's obvious that you love this child.

When Eric was born, I had no questions, when he would start walking, when he would start crawling, when he would start talking. I knew it would be. When Philippe was born, I knew that I needed to make maximum efforts so that he began to walk, so that he could begin to crawl and talk. He never speaks, only short words, cannot say what he wants, and this is already 4,5 of the year. And it is much harder when you do not know what the child wants to tell you. He is nervous, you are nervous. Some children have heart problems. In Phillippe were, and he did several operations.

When you have a child with special needs, you live from one thing to another - constantly like in war: you compete, compete, compete. You're worried. There is something to work on, and so on endlessly.

But ordinary children also have health problems - you can’t guess it either. You ordered it and you don’t know what you’ll get. And you have to accept it, live with it, continue to compete and go to the end.

A.G.-S .: What is the hardest and best in raising children with Down syndrome?

M. T.:

“I think the most difficult thing is that these children have very poor speech and they need constant treatment. It is difficult when a child does not speak and cannot express his needs and desires. You also have to constantly go to doctors - neither one nor the other.

And the best thing is every child. You don't think about what's worse, only what's better - that's their personality. It is impossible to be offended or angry with these children. When they do some harm, I can’t just go and punish them, because I understand that this was not done out of malice, but in a game or out of emotion.

Children with Down syndrome are taught to be different. If Phillippe had not been born, I would have continued to think that a disabled person is not a full-fledged member of society. I really thought so. I didn’t understand what could be taken from a disabled person. And when I had my own child, I realized that they are the same people. They can’t do something, and I can’t do something. The first thing I see is their personality, and only then that they can’t do something. But I also can’t do something. For me, this erased the boundaries between an ordinary person and a disabled person.

And not only for me: the appearance of Philip and then Elsie changed many people who know us, including my parents. They see that it is not so bad, and stereotypes are destroyed in their minds.

A.G.-S .: What message did you want to convey to parents raising children with Down syndrome or other special needs?

M. T.:

- Cry - maximum in the hospital, and then direct all this energy to the child. When we cry, we feel sorry for ourselves, and this is normal. Most of us who have been through this remember some moments and we want to cry, but we need to take all the pity away from ourselves and accept this child as the best gift. When we receive birthday gifts, we don’t know what they will bring us - something good, or not exactly what we expected. Also, this child is such a gift for us.

Put the best we can into a child and love him. It takes several months to a year to get used to the new life. They will look, they will ask, someone will perceive it, someone will not perceive it - you don’t need to pay attention to it. Knowing that your child is the best, healthy or not, is the best for you. For others, their children are the best. Don’t be afraid of it, love it, know that everything will be fine with your child. Be that as it may, it’s in our hands to make it even better.

The main thing is not to feel sorry for yourself and not think how unlucky I am, but to think that I am lucky and have been entrusted with such a responsible mission, and why it was entrusted to me and not someone else, which means I can handle it.

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