Tímea Némethné Baky and her husband Ádám adopted two children with Down syndrome. Samu is four and a half years old and her sister Hanga is 4 months old. Their parents would like to raise awareness that children with genetic disorder don’t only mean problems, but also give so much happiness. We were talking with Tímea about bringing up two children with Down syndrome.
How did you come up with the idea for adoption?
When I was working on my first degree as a social worker I had an opportunity to work in the temporary home for the Down Foundation. I have never met anyone before who had this genetic disorder and on my first day I fell in love with this world so much, I decided to work with these people. My boss at the time later decided to take home a little boy with Down syndrome as an adoptive parent and I also felt I would like to have a child with Down syndrome. When I met my husband we were planning to have two children of our own and to adopt one more who had Down syndrome. Then the years passed, we did not have a child and all we knew about adoption is that it takes years so we submitted our application.
What made you fall in love with people with Down’s?
On my first day they welcomed me with so much love, they were so selfless and honest that I couldn’t get away. Although I only met adults and later I completed a degree in special education, I did not work with kids.
Did you feel that it would be OK for your child to grow up to this?
They are all unique and have something more that we needed. Our situation is easier than those who find out at birth. We were aware of the developmental potentials, what they can expect in their adult life. Most parents are worried what will happen to their children if they die. I worked with adults who did not necessarily have living parents so I am not afraid of this.
How does a baby with Down’s differ from a healthy one?
The benefit I realised with my two is that they sleep through the night, you don’t need to get up, they are calm, don’t cry, and easy to comfort. They also have hypotonia, their muscles are weak so everything happens later. My son sat when he was one and walked when he was 19 months old. You can say their development is slower but I say it’s great that they are babies for a longer time. You need to attend developmental courses, but you would also visit some with a healthy baby – like swimming or dancing. We are seeing a professional who does exercises with them, and I try to do the same at home. About their physical characteristics: they have narrow eyes, short legs, short scruff, and they are snub-nosed. They are considered to have moderate intellectual disability, but it also varies individually.
What other diseases are common among them?
Heart diseases are common (my daughter also has), just like digestive and thyroid disorders. Their ears are tighter, so they are more likely to get ear infections and their eyesight is not always perfect.
Where can an adult with Down’s get to?
It depends on their intellectual capabilities and how much special development they’ve had. Some of them are able to work independently but it’s not usual. Most of them can live in a home with others and work in a safe environment. They tolerate monotony well, they are diligent, persistent and able to do semi-skilled labour. There is a wide scale of possibilities.
Can they learn to speak, write, read?
Some of them can, some cannot. Today the developmental possibilities are better, special education professionals see more potential in them, so more members of the younger generation can write and read. But not many of the older ones since it was not expected of them. My son doesn’t really talk yet, he uses only a few words, but he uses gestures and communicate with them properly. Even strangers understand him.
What term do you like to use to describe the condition of the kids?
We don’t like the word disease and prefer to say Down syndrome. I prefer handicapped over retarded but it’s just personal preference. But it doesn’t really matter what they say only that it’s said nicely.
What do you think about the fact that in Hungary the whole process of prenatal care is focused on the screening of Down syndrome?
I think it’s not fair. These screenings are not accurate in Hungary, in several cases Down syndrome is not detected, or they say that the child will have Down’s but they don’t. And this is not the worst thing that can happen. Much more serious injuries can happen during birth. In my son’s group there were mothers who did all the screenings and tests and still had a child with Down syndrome.
What are parents told in the hospital if their child turns out to have Down syndrome?
Usually they are told they don’t have to take them home. And I don’t blame the parents if they leave the baby. If people are not prepared to have a child with Down syndrome and all they hear about it is that they will be a problem. The best option is to have an abortion the Doctors say because the child will never be able to live independently. Then parents break down.
It’s a miracle if the families who only hear negative things about Down syndrome decide to take them home. It would be a completely different story if doctors said that these children would be a bit slower, but they would also develop and have a full life with them.
Does it mean those who give birth to children with Down syndrome don’t know about their condition?
Yes, I think so. If they find out they usually have an abortion. Very few of my friends knew during pregnancy and decided to keep the baby.
Is it true that marriages broke up if they have a child with genetic disorder?
Some of them yes, but I think they would divorce anyway. But in many cases it strengthens the family, they spend more time together because the baby requires more attention.
Did you apply for a baby with Down syndrome specifically?
Yes, we did. We didn’t even know where to mention it on the form, so we just added it as a comment that we would like to have a child with Down syndrome. People were surprised. The psychologist said we were too young although we were already 30 and these kids don’t leave the family home at the age of 18. And we were not a bitter couple whose last chance is adoption after unsuccessful attempts of in vitro fertilisation. We were happy and thought we can have children of our own as well. Everyone was very helpful and still today we receive a lot of help and never felt the downside of having a child with the genetic disorder.
We applied in January, our son was born in March but we could only take him home at the beginning of May because we had to wait for the paperwork to be done. Samu was in an infant home until then. In the meantime, we got to know Éva Steinbach who tries to find parents for babies with Down syndrome and from her we already found out that Samu had arrived.
How much do you know about the background of Samu?
It was a secret adoption; his parents gave him up after he was born. His parents were intellectual people who had in vitro fertilisation and they waited for him for a long time but decided not to take him because of the Down syndrome. We appreciate them very much for doing this because they decided to do the best they could. We are also very grateful because Samu is an expected child who was very well taken care of during the pregnancy.
But in general it is a luckier situation if the parents decide not to take home the baby, they don’t give them up but try to find them adoptive parents or someone who can help. Because if the children get into the system it is very rare that someone will look for children with Down syndrome.
Did your husband easily accepted the idea of adopting a baby with Down syndrome?
Yes. He also has a degree in social pedagogy and worked with mentally disabled people and liked them very much. And he didn’t protest against adoption. It was my idea but I didn’t have to persuade him.
And what about the extended family?
They required some persuasion. They never really liked the idea of adoption nor the fact that he would have a genetic disorder. They had the usual arguments: we take on too much, what if we can’t take it and broke up, we won’t have time to go to the theatre, we are sacrificing ourselves and we shouldn’t do it. Than Samu proved them to be wrong. Right now he is on holiday at my in-laws, they grew to love him, and were only afraid of the unknown.
Was a baby with Down syndrome different from the adults?
I only see the baby in them not the Down syndrome. They are soft babies, who smile and can be cuddled.
Parents nowadays often compete whose child can walk, talk or learn a foreign language first…
I try to stay out of this. Of course I pay attention to the kids in Samu’s group but children with Down syndrome are so different, so some of them are not better because the parents are doing something different. Our son started everything later and still doesn’t talk. But he can love even more than the other kids with Down, he is a clown with some extra. And he can give so much to his environment that no one questions why he isn’t drawing or doing folk dance.
What kind of development did you take him to?
We were going to the early development centre individually and in groups as well and he is swimming from a very young age. Now he is going to an integrated kindergarten where healthy and disabled kids are in the same group. He has specialised classes there and we also go back to the early development centre, where he does swimming and music. Hanga has one class of individual development and exercise every week and we should do the exercises at home 4 or 5 times a day but sometimes it doesn’t fit our schedule because she sleeps nearly all day long.
Do these kids require any special preparation?
They require love and care. Although I have a degree in special education I need to learn everything with the other mums. Luckily there are many groups, distribution lists for Down parents. At the beginning it was a huge help for me, the other parents guided me on what needs to be arranged to get the allowances. I wouldn’t have known all that by myself.
Do you know many families with Down?
Yes, but Samu also has friends who are healthy and we enjoy both surroundings. We need the Down families to see similar situations, but we also need the healthy families because it’s great to see that the kids don’t care about this, he has many friends in the kindergarten, the older ones help him and don’t leave him out.
What can you say about the other moms with kids who has Down syndrome?
At first they are desperate, they were not planning this. But when they accept it, they are awesome mothers.
How do families with healthy children react to you?
We are lucky everyone accepted us, no one ended our friendship because of it. We only get positive comments.
Do the other kids on the playground know he has Down syndrome?
There was a time when it really bothered me that my 3-year-old son was thought to be a one-year-old baby, because he was very small for his age. He is still small, wears clothes for 2-year-olds at the age of 4. But in general we are taken well. Maybe they feel that Down syndrome is a tragedy but that’s not what we remind them of.
Are you open about the adoption?
Lately not so much. At the beginning we talked about it a lot, hoped that people might follow our example and it can be helpful. But people started to look at us like we were heroes and we really hated that. We are not saints. We did not adopt them to save them from the system but we wanted them to be the members of our family. We are rather selfish, we wanted the children.
But there are situations when you can’t skip the topic. When people ask if we knew during pregnancy we need to tell them. The parents in the kindergarten found out just now that we adopted Samu when Hanga arrived.
Did Samu fit in well in the kindergarten?
Yes, he likes it. And previously he went to nursery as well.
What can Samu do now?
He baths alone, eats alone and uses the toilet. He can play with cars, plasticine and he can scribble or build things. He is a clown, very nice, not resentful at all. If we have a harsh word with my husband he is the one who comes to apologise.
What kind of school is he going to go?
I think he will go to a special school for the handicapped. In case of the kindergarten we chose an integrated one deliberately. And it was a good choice, he needs to learn how to cooperate with healthy people, but a specialised school will be better with the tailored techniques.
Can you live a full life with Samu?
Yes. We go hiking, kid programs, vacations. Like other families.
When do these kids realise that they are different from the others?
It depends on their intellectual capacity but most of the adults I knew were not aware of this.
Do you talk about the adoption?
Yes. But we don’t know how much he understands since he doesn’t answer or ask questions.
How come the idea of a second child?
Time was passing and we still didn’t have a child of our own. We told Éva Steinbach that if we can’t have a child we are taking home a little girl, because a sibling is a must. And it was natural for us that if adopted again that they must be a child with Down syndrome.
The first one was too good. We thought that if we die the two of them would be always be there for each other. It comforts me that they can live together. In the spring we told her that we started to go for tests to find out why we were not having a child and we should return to the option of adoption at the beginning of next year. But Éva called us in the summer to tell us there was a little girl. It was my husband’s birthday and he got very excited. The parents wanted an open adoption, but we did not have any paper at that time, we didn’t even apply for adoption again. The child welfare agency suggested we take her home as guardians until we can officially adopt her. It takes a few months. Hanga was with foster parents for a few weeks, we took her from there.
What do you know about her biological parents?
I feel sorry for them. Hanga was conceived with in vitro fertilisation, she was a triplet. The parents wanted a girl that’s why they used IVF and had two boys and Hanga who were born premature. They live in a very small village far from development possibilities so they decided to give her up because we can take better care of her.
Are you in contact with them?
Yes, via phone and internet since they live far away. This was a very difficult decision for them but I always felt like they want the best for their daughter and we can give her what they couldn’t in a small village with three other kids.
How was Hanga affected by premature birth?
She took it well, but her heart is not the best.
How did Samu react?
We were afraid since he was the centre of the family, and everything went how he imagined. We live with my parents who spoil him, that’s exactly why we wanted a sibling. We didn’t have much time to prepare, and Samu was on vacation at his grandparents when we received the news. He took it very well. He always refers to Hanga as a family member, he strokes her, feeds her, holds her bottle and loves when I change her diaper. He accepts her as a family member. Of course he is jealous, but not because of us, usually when we have guests he tries to be the centre of attention. But he did not misbehave, and didn’t start wetting the bed.
Hanga lived in a hospital, with foster parents and now with you. Has this affected her?
I don’t know, she is still so small and sleeps nearly all day. What worries me is that she has two twin brothers and probably she misses them. But we try to comfort her as much as we can.
Are you having any more babies?
No. In the meantime we had our tests and turned out everything is fine but we don’t like to have more kids, our family is complete now. I feel we have everything.
Who do you think is suitable for adopting a child with Down syndrome?
I think those who are suitable for adoption can adopt a child with Down syndrome. It’s not a bigger responsibility. What you need to keep in mind that development is not an option but a must, but otherwise I would recommend it to anyone, they give a lot of love. I wouldn’t recommend for those who want their children to be the most beautiful, the smartest and the brainiest. But there is not much of a difference, all of them are babies.
Translated by Veronika Kéki
Reviewed by Mazey Grace Holland