Monday, June 7, 2010

Question and Answer Post

Does Zoya watch kids shows? If she does, is there any particular show like Sesame Street that she enjoys? I can only imagine that TV was not something they had access to????
Zoya doesn’t watch much TV. Her attention span is minimal and she just isn’t very interested but is starting to sit a little longer when I sit with her. I bought Signing Times and she watches those more (and better) than anything else. I love the Signing Time Series as it is a great language lesson…both for signing and new vocabulary, especially for a child who comes from a non-English speaking background. Right now we watch the Baby Signing Times DVDs and these hold her attention way better than the regular Signing Times DVDs.

She likes shows with real people and won’t even look at the TV if it’s a cartoon! Most of the time we put the TV on the music channels (without videos…it’s just music) and she seems to enjoy just listening while she flies from one place to another just exploring! Other than Signing Times, she likes Sesame Street (She likes the SS karaoke DVD we have…of course because it has music).

As far as having access to television in the orphanage...she did...somewhat.  The caregivers would watch "Ukraine's Got Talent" or something similar.  Many evenings and weekends, when the orphanage was more "lax," the TV would be on and the caregivers would be watching it. So she had seen TV but nothing that would be beneficial to her!

That looks so much like the zoo in our city! you aren't in the fort Wayne area are you?
Nope, I’m guessing not since I have no idea where Fort Wayne is! LOL. We are in Erie, PA.

How did you find out what the day to day life is like with a child who has Down Syndrome? Ex: how much supervision do they require on average, per age group? I have not found a single place to answer this question.
I taught special education (including student with Down Syndrome) for 6 years so I was able to learn a lot during that time. We also have done respite care for a cute little (very active) guy with Down Syndrome so we got to see what day to day (and overnight) can be like caring for a child with DS. Through my experiences I’ve learned that every child with DS is different. No two are the same. There is a spectrum from here to China as far as what abilities and needs people with DS posses. Some people with DS don’t require much more supervision than people without DS, while some require a whole lot more. Some people with DS will grow up to live independently (check out THIS LINK which talks about an award winning documentary about two adults with DS who get married and navigate through a pretty normal life). Some people with DS will require more supervision and may live at home forever, some may live in a group home. It all depends on the individual. You probably were unsuccessful finding an average because there is no average, it all depends on the child. Many parents saying caring for their child with DS is the same or even easier than caring for their children without DS. Other factors play in too: some people with DS may also have ADHD, or other behavior issues which require more supervision. The best way to find out what day to day life is like is to spend some time with people who have DS, while remembering that there is no formula for how much supervision or attention one child will need…it all depends on the individual child. Thanks for asking this question as I’m sure many people without children with DS may wonder what it’s like! Right now for us, and for Zoya, she requires just as much supervision and attention as most other 1 to 2 year olds. Since she has DS and has lived in an orphanage, right now she requires pretty constant supervision as everything in her little world is new and she is so curious to explore and doesn’t completely understand safety and will touch/pull/grab/eat anything new. For Zoya, I see her being able to spend some time unsupervised by adults (in the far future). Will she live with us forever or on her own or in assisted living? We don’t know yet but we are willing to happily accept any of those scenarios.

Did you start Zoya out in her own room or did she start out with you?
We started Zoya out in her own room in her own crib. We discussed this for a while and our options were: put her in her own room and crib and we sleep in our room, put her in her own room and crib and sleep on the floor next to her, have her in our room in a pack n’play, or sleep in our bed with us. After we spent time with her in our apartment in Ukraine we knew the last option would NEVER work. This girl tosses and turns and kicks and sits up and bends every which way while she sleeps! Neither of us got much sleep in Ukraine! We decided, after getting to know Zoya and her personality while in Ukraine, that we should start with her in her room as this was our long term goal and didn’t want her to get used to being in our room and then have to change yet another thing in her environment. We got a video baby monitor and pretty much stayed married to it the first few weeks home. This way we could see if Zoya was stirring or going to wake up and we could be there in a flash so she wouldn’t be scared. We worried she’d wake up and wonder where she was, but since we had the video monitor we could usually get there before she actually woke up to reassure her. Zoya is now at the point where she is very comfortable in her room and the only thing her room is used for is sleeping (at night) and dressing/changing. We don’t use her room for playing or anything else, so she knows at nighttime when we go up there that it is time to sleep. While we were first home we had to rock her completely to sleep and put her in her crib while she was sleeping. Recently she began wanting to be put in her crib after being rocked a little, but not completely asleep. So we rock her a little (lately she hasn't needed to be rocked at at all) and then put her in her crib while she is sleepy, but not completely asleep and we rub her belly and her face to get her relaxed and she has been able to get herself to sleep which shows she is more comfortable now. We also put a tshirt of mine (that had my scent) into her crib and this seems to comfort her.

How are the naps going?
For some reason sleep doesn’t come as easily to Zoya during the day as it does at night. When we were first home she would take 3 hour naps! Then came the nap protest at which point she developed a real fear of being left in her room in her crib during the daytime. I can’t explain why it is any different than at night. We were unsure if the protest was a behavior (a get-her-way sort of thing) or if she was scared. It didn’t take long to realize she was afraid…for some reason she was truly afraid of being left in her room at nap time. She would fall asleep in our arms and then wake the minute we put her in her crib. It got to the point that if we walked into her bedroom with her during the day she would tense up and start crying, worrying that we would start the nap time and leave her in there. She would get a terrible look of fear on her face. So we tried a million things, but the thing that is working at THE MOMENT is for me to bounce her to sleep in my baby k’tan carrier and let her sleep on my chest. For the past week she has done this and after about 40 minutes to an hour she will wake up and I will lay her down on the couch next to me where she will go back to sleep for about another hour. I was worried to start this routine with her thinking she’d need to be bounced to sleep and sleep on my chest until she is 18 but I soon realized that she NEEDS this. This is her time to know that she is 100% safe and that I will not leave her. For some reason I think her fear of abandonment peaks at nap time. I had to remind myself that emotionally, and in the area of attachment, Zoya is much like a one or two month old since that is how long she has been home. It would be acceptable for a one to two month old to sleep on her momma’s chest for nap time, so for now, Zoya has told us that this is what she needs and we will do it. Again, why it is different day as opposed to night, I really don’t know! (but I’m very very thankful she does well at night!) UPDATE: I’m writing this small because I’m afraid to jinx myself…but….yesterday I rocked Zoya to sleep in her bedroom and transferred her to her crib when she woke up. She slept in her crib for 30 minutes! Today, I attempted to do the same thing, except she didn’t want to be rocked and so I put her in her crib and she put herself to sleep for TWO HOURS AND FORTY MINUTES of a nap!!! Praise God! I didn’t even know what to do with myself! I sat outside in the sun and drank some iced tea and listened to the birds chirp for a little bit (and…okay, I did somewhat obsessively look at the video monitor…but still)…I had been dreaming of doing that since we returned from Ukraine!

I wanted to know about Zoya's name, its so lovely, was that her birth name or did you decided on this for her?
Zoya was her birth name. It is a Ukrainian name and it’s meaning is “life” (derived from the Greek name “Zoe”). We briefly thought about changing it, as many adoptive families do, to signify a new start, but quickly decided to keep it. One reason we kept it was because it is part of her heritage and some day, if she chooses to share her story with others, she will have a piece of her past always with her. Even though her past is sad and scary, it will always be a part of her. Another reason we decided to keep it was because of it’s meaning…life. We thought that was pretty symbolic seeing that Zoya’s only chance at life would be if she were adopted. There is a pretty cool story about how we chose Zoya and a sign that pointed us toward her by name. Click HERE to read it.
If you have any other questions, leave them in the comments section...I will start collecting for the next post to answer all your questions. Thanks to all of you for following and leaving such great, helpful, supportive comments! I read every single one and love hearing from you!


  1. Love this Q&A post!

    Thanks for doing it.

    As we say around here "oh happy day", it is our song when we are smiling and happy!


  2. I was wondering what your thoughts are about this whole adventure. What was the most pleasant surprise? What was the most unpleasant surprise?

    Thanks....Sue M.

  3. I just started reading your blog today- and your story is amazing. I found the link on Reeses Rainbow, and I am loving reading your story! It is such a small world it seems because after reading about 20 old posts, I saw you reference Erie PA! Thats where I live... Crazy :)

    Anyways, thank you for sharing your story. You are an inspiration!