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So she can walk through life on her own: My days with Violeta

Note: The story below was based on an extensive interview in February 2020. At the time, we had no idea that the routines described would soon be changing dramatically. Today, from quarantine, Yoisy writes: “Our routine has changed, but we’re okay. The days feel longer for my Violeta, but we’re taking advantage of the time to learn to use the potty. We hope this ends soon, because it’s important to socialize and go out. And we miss our visits to the office.”

My name is Yoisbeth Sarao. I was born in Querétaro, Mexico, but I’ve lived in many parts of Mexico. I came to the U.S. when I was 10 years old, and I currently live in Vancouver, Washington with my husband and my daughter Violeta, a beautiful, dynamic and very active little girl.

A little over three years ago, I found out that the baby I was expecting had Down Syndrome. At first it was hard for me to understand and accept this. I’d never had any contact with someone who had Down Syndrome, and I had very little information. But, happily, I got a lot of support from my family who encouraged me, saying that everything was going to be fine.

My pregnancy was very easy, but when Violeta was born at 34 weeks, the complications began. She had a twisted intestine and they had to operate. We spent a month and three days in neonatal intensive care with her. For much of this time she was poised between life and death; in my yearning for her to survive, I felt that the least important thing was her Down Syndrome. Still, during that whole time I began to inform myself about what was coming; that is, about my future life with Violeta.

The hospital stay was difficult, but I think that the time we were there helped me to think. I told myself: “After everything that’s happened, I have to give my all to help my daughter get ahead.” At the same time, I have to say that during our time in the hospital the doctors and the counselors scared me a little. They said that she was going to be late doing this, that and the other thing: late walking; late talking; a late learner, etc.  So, I thought: “How am I going to do this? Who’ll help me?” But when we left there, my husband and I said: “Violeta is home and Violeta is a normal child. She’s not sick, there’s nothing she has to be cured of, nothing. We have to do everything that’s in our hands so that she’s successful at everything.”

Obviously, we got help from people like the teachers who come to the house to help, the therapists who give support, all that. Still, for a short time, I was still thinking: “Violeta is a baby with Down Syndrome, she may just be in bed for a long time.” But Violeta began to develop like a normal baby. She moved, rolled over in bed, and when we put her on the floor with her toys, she began to play, and I realized that I have to teach her everything I can. Every activity that I saw for babies, I thought: “That will help me.” And I realized that she was responding, and that got me very excited because I said, “This is nothing bad. She’s going to be able to do everything, and she’ll do it well.  And from that time on, I’ve dedicated myself to this. I loved my work, but I left work for a time. My husband supported me, saying: “I’ll work and you can stay with the baby to help her and so that she’ll be successful in everything we want her to learn.”

From the first time that I came to the NWDSA workshop that they call the RLC, I thought: “I have to come to these”, because there are other mothers and other people who talk about the things they do and what they’re working on. They welcome you like family, and they always have a lot of things to teach. Or sometimes you find out: “Oh, I’m already doing that, that’s good.”

My first fear was when she was late walking. Violeta didn’t walk at 10 months or a year, like many babies. She didn’t walk until she was nearly a year and a half, or more. So then, I learned to say: “Nothing’s going on, it’s fine.” And little by little, she’s done everything that she can do up until now, and she’s very well balanced, very happy with what she does.

My days with Violeta now go by in a rush. Our days are spent in getting up, going through our routines, learning some new things. I feel that I’ve erased completely the idea of Down Syndrome.

In the morning, we get up early with Violeta’s Dad, around 7:30 am. I get up first, I do the things I have to do: wash my face, get Violeta’s clothes ready, and I try to have a cup of coffee with my husband before waking Violeta. But Violeta knows. Often, she wakes up by herself and comes out of the room, and sits down on the floor a little, like she’s waking up. Later, I ask her: “Violeta, are you ready?” And we sing the song “Good Morning”. After that, she comes up to me and makes the sign to ask for food or milk. These are signs we’ve practiced, because all three of us have worked to learn a few signs.  Violeta doesn’t talk yet, except for a few words, but she has a great desire to talk and she’s close. She knows about 25 signs – 20 she does by herself and the other 5 I help her with. I imagine that when she does start to talk, she’s going to be a little chatterbox.

After we eat, her father goes to work and she and I are left together. I take her down from her chair and she helps me wash the dishes. Later I take some different clothing out for her and ask her: “Which do you want to wear?” or “Which one do you like?” so that she learns to choose.

I like mornings best, so I try to schedule all the therapies and appointments in the morning. At the moment, we’re receiving four different types of therapy. Or else, we go to the children’s story time at the library. Violeta likes to hear the songs, but when it’s time to sit she wants to be up front. She likes to get up to see the book or turn the page of the books. She’s very sociable in the circle, and she likes being with other children. The only thing I’m teaching her now is not to hug them, because she wants to hug the children, give them a kiss, things like that. A lot of children her age don’t like that, so I tell her: “Wait a little, ask permission.”

Story time is once a week, but we also go on other days because the library here has a lot of things for children. Violeta takes out the toy dishes and plays happily. I can say that she’s very independent. For example, she’s fine if I tell her: “I’m sitting here”.  She goes off and explores and when she wants to show me something, she talks to me, or she brings it to me herself.

 Another thing that we try to do at least twice a week is go swimming. I put her in the water at six months and she liked it, and now she still does. They know her there, and she goes in with her towel and greets the receptionist, “Hi” and in we go. She’d like to go in by herself, but I still have to watch her. She sees everything that the other children do, she learns from them and it’s one of her favorite activities. The only problem now is that she doesn’t want to leave. Before, it was easy, but now I show her the clock and tell her: “Look at that, when the hand has gone all around, we’re leaving.” But she wants to stay.

She recognizes the places we go. We go frequently to the organic food restaurant in Lake Oswego where her father works. When we park there and she sees the big sign, she says, “Oh Papa, Papa!” When we come back home, she signs or shows me that she’s excited because we’re home. I think this is what excites me most – she’s so responsive. Sometimes the low expectations you put on children with Down Syndrome make us fall into the mistake of limiting them. I’ve tried to avoid falling into that with Violeta, because she’s responded very well.

I want to think that she’s a very happy child, because she enjoys everything she does. When she cries, it’s because she really doesn’t want something, she’s feeling sick or she’s very tired and wants to sleep. I’ve also learned to understand her and to respond to her needs.

After the morning activities, we go back home. That’s a time for playing quietly, because she’s never liked napping. In the afternoons, we normally take out the books. Right now, we’re working hard so that she learns to express her preferences. For example, I ask her: “Which book do you want me to read? This one or that one?”  She still doesn’t do it, she still can’t answer, but I want her to be independent this way, to know how to express what she wants, what she needs. 

Other times we go to her room, and if I washed the clothes, we can put them away. One thing she likes a lot right now, since she turned three, is to play with her dolls. She askes me to bundle them up, to feed them, and we play with them, she and I.  Or we go out for a walk to the little park so that she can get outside.

At night, I try not to have her watch a lot of television. But sometimes she asks to see a movie and I put it on for her. When it’s time to go to bed, and she knows that I’m going to put her pajamas on, she likes to bring over her little stool and try to get up in front of the mirror to brush her teeth. She doesn’t really reach yet, but she already wants to get up there. We always sing at night when she’s ready for bed. There are several songs that she likes, and she knows how to make the hand movements. Sometimes she still wants to wait up for her Papa; and when she sees that Papa’s arrived, ok, then she goes to sleep. But a lot of times, when her father comes home, she’s already asleep.

That’s how my days with her go. Busy, happy, trying to do as much as possible, learning so many things. I remember that when I was a little girl, I wanted a baby and I would always thing about what I would do when I had a baby. This was one part of the things that scared me a lot when I learned that she was going to have Down Syndrome. But now I see that my days are even more filled with activities with my baby than I could ever have imagined. I read a lot of things about other families and other people to give me an idea and sometimes I say: “Violeta’s doing fine.”  Not all families have this blessing.

I’m bilingual, but we speak a lot of Spanish at home. I’ve been very surprised how she’s reacted to hearing two languages. Before, I thought: “Oh no, I have to speak English so she’ll learn”, and when I’m alone with her I speak English. All the therapies are in English, the teachers who come to the house, all of that is in English. And now that she’ll be going to school, it’s going to be like an extra help because at schools they’re going to speak only English to her. But I do see her using two languages, because I see that she understands both. In Spanish she says something like “agua” [water] or like “leche” [milk], and in English she can say “please”, she says “come”, a few little words like that.  I’d like for her to learn both languages. For someone [with Down Syndrome] to be bilingual – it’s not impossible. I believe it’s possible.

My goal, my main objective for my daughter is for her to be as independent as possible. That she can navigate through life by herself, that she can say: “I want to go to the store to buy some potatoes”, I don’t know, something that simple, but that she doesn’t have to be dependent on anyone. That she doesn’t live with the limitations that people impose because she has Down Syndrome, thinking that she can’t because she has Down Syndrome, or that she doesn’t do such and such because she has Down Syndrome.  My goal then is to work with her, day by day, so that she can learn everything.  It sounds difficult, maybe, and maybe there’ll be some hard times, but it’s not impossible, right?

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