How to raise a child with Down syndrome: the experience of the Ukrainian family in the United States
'12.10.2018'
Source: Voice of America
Ukrainian Maryana Tenenika, 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 a test. However, the United States has established a system of support for families in which children with special needs are growing - this helped them adapt to new roles and start looking for resources for the development of their son.
A journalist talked with Mariana VOA Alina Golinata-Slota and learned what it is 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 Philip was born?
Mariana Tenenik:
- We were really looking forward to our baby, all tests and ultrasound were perfect. He was born three weeks earlier. As soon as I took him in my arms and our gazes met, I realized that he had Down syndrome. Although she could not say anything. On the fourth day, an analysis was made and the syndrome was confirmed.
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 is changing - 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 for the holidays. I’m even glad that God gave us a special child, because those people around 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 the birth of Philip, I learned that a very large percentage of such children are left in maternity hospitals only because of the syndrome, I just stopped sleeping, it tormented me. My husband supported me, and in 2015 we started taking courses on adoption at a local center, but since there are almost no such children here who have been abandoned, 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 mediator sent us a picture of Elsie and wrote, "I think this child will be perfect for you." When I looked, I had no 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 ... She hugged me so tightly that I said - that's for sure, now nothing can separate us, and we will do everything to pick her up 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 that, the process of preparing for the trial begins. This is your second visit to the court session. 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 days of appeal when it is allowed to visit the child, but cannot be collected. 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 are prescribed by a doctor. When such a child is born, you are immediately provided with all the information in the hospital. In addition, they inform the special office that such a child was born, and they immediately call you - in a week or two - and ask what is needed.
An early intervention program operates for up to three years, which provides various types of therapy - physical, play, work, language. Therapists come every few months and assess the level of the child and his progress. From the age of three, they send the child to school.
Until a year old, Philip had only 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 told me where to go and we got other services. The lessons 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 are a role model, a role model, whom children with special needs can be equal 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 haven't been all day, but I went to lunch, helped during the "quiet hour". Each child has individual therapy sessions at school, depending on what he is prescribed. They are taught by individual teachers. They also study, go to the gym, play music - at a level where they can understand. They are also taken to dinner, and the children are much more disciplined than at home. Although many of them don't speak, they know the rules. And in general it is very difficult for teachers.
A.G.-S .: In addition to therapy at school, does Philip have any other classes?
M. T.:
- No, at school he receives all the necessary therapy. You can get it in school or out of school - insurance covers one thing. 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 - the parents got together, the teacher worked with the children, and they had fun. There were several children with Down syndrome. Now Philip is at such an age that he cannot 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 quicker. Elsie spent a year in an orphanage. I learned a lot there. For example, go to sleep on your own. She doesn't like to be rocked, wants to be in her arms, but can't even sit on her arms, because she's not used to it. Philip was also not always nimble. Elsie does not walk yet, but she tries very hard to be active, wants to learn something new.
A.G.-S .: What is the relationship between children among themselves?
M. T.:
- Philip 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 in the orphanage, she clung to her, and they immediately struck up a friendship. Eric is a mountain behind her. So we came to school for lunch, and he says: "This is my sister" and kisses, hugs her.
Erik and Phil are fighting and reconciling, but when they play with other children, Erik explains to them that Philip 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 our children, both wanted. However, when Philip was born, there was shock, pain, surprise. It's like when you order something online and expect that you will like this beautiful dress, but you don't get what you ordered at all. Disappointment comes - you cannot turn it back, you have to go with what you were given. I think a lot depends on whether you accept it, accept it and look for the best that you can do for this child. Obviously 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 Philip was born, I knew that I needed to exert maximum efforts so that he began to walk in order to 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 Philip were, and he did several operations.
When you have a child with special needs, you live from one to the other - constantly like in a war: you compete, compete, compete. You are worried. There is something to work on, and so on without end.
But ordinary children also have health problems - you can't guess that either. I ordered it and you don't know what will come to you. 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 lame speech and they need constant treatment. It is difficult when the child does not speak and cannot express his needs and desires. You also have to constantly go to the doctors - neither one, so another.
And the best thing is every child. You don’t think about which is worse, but only about which is better - this is their personality. It is impossible to be offended or angry with these children. When they do some kind of harm, I can't just take and punish them, because I understand that this is not done out of malice, but in a game or on emotions.
Children with Down syndrome are taught to be different. If Philip was not born, I would have thought further that a disabled person is not a full-fledged member of society. I really thought so. I did not understand what can be taken from an inferior person. And when I had my own child, I realized that they are the same people. They can't do something, I can't do something. The first thing I see is their personality, and only then that they cannot do something. But I can't do something either. 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.:
- Crying - maximum in the hospital, and then direct all these forces to the child. When we cry, we feel sorry for ourselves, and that's okay. Most of us who went through this remember some moments, and we want to cry, but we need to remove all pity from ourselves and accept this child as the best gift. When we receive gifts for our birthday, we do not know what will be brought to us - something good, or not quite what we expected. Also, this child is such a gift for us.
Put the best we can in the child and love him. It takes several months - a year to get used to a new life. They will look, they will ask, someone will perceive it, someone will not perceive it - no need to pay attention to it. Knowing that your child is the best, healthy or not - he is the best for you. For others, their children are the best. Do not be afraid of this, love, know that everything will be fine with your child. Whatever it was - it is in our hands to make it even better.
The main thing is not to feel sorry for myself and not to think how unlucky I am, but to think that I was lucky and I have been entrusted with such a responsible mission, and why this is entrusted to me and not to someone else, then I can handle it.
