Thursday, November 3, 2011

How Long Must I Wait....

How many licks does it take to get to the center of a tootsie pop?

It takes just over 46 hrs. to drive from Los Angeles, CA to Portland Maine. The Earth takes a year to go all the way around the sun. An Elephant is pregnant for 22 months. It takes an average for 5 years for a college degree.

How long does it take for a child with Down syndrome, who lived the first 7 1/2 years in an understaffed, under funded orphanage to start acting like a typical almost 8 year old child with Down syndrome?

You can find the answers to a whole lot of "How much time..." questions by using google. But no one can tell me how long it it going to take Yana to reach even simple developmental milestones.



Yana has been home for 16 months. It is hard most days for me to see how far she has come. Progress has been slow. So very, very, very blessed slow!

She definitely has learned some about how to play one on one with another person. That has really helped her personality to shine through. She is willing to explore her surroundings on her own, and to search out a toy. Those are both things she would not do the first few months home. She open doors, climbs on furniture, and makes messes. She will give me "a big hug" or lean in for "kisses". She now makes some consonant sounds, but will not mimic. She has gotten much stronger and moves more purposefully. She has gone from weighing 24 lbs. to 35 lbs. She has been doing these things for a while now.

She seemed to me to have plateaued. And I have found the waiting game, the game where I wonder "Is this all that is in store for her?" to be especially difficult. No one can give me the answer to "IS this it?".

There are days I hate this journey. I love Yana, but I hate some of the issues we deal with in regards to her. I get so frustrated wondering just what expectations I should have for her on a daily basis, let alone for the future.



Yana likes to make noises. Throat clearing, tongue clicking or sucking. Spitting "raspberries". Licking a toy or banging it on her teeth. After 10 hours of this each day on her "bad" days, I start feeling a little crazy. I end up so angry at her. WHY? WHY does she do this? EVEN when I sit and play with her she will continue making these noises. I can get her to quit with a firm "NO" or tap her on the mouth and she will stop for a short time only to come back with these noises with a vengeance. It drives every one of us crazy after a bit! Sometimes she goes to bed a lot earlier then the rest of us. There's just nothing else we can do.




I've been at my wits end lately with her. The "plateau" has loomed large and ominous before me for a while. There is some good news though. The last few weeks, baby steps have been made. My almost 9 year old daughter can now:

1. Push large buttons or easy levers to make a toy work.

2. Play pat-a-cake clapping her own hands or "Clap" when asked to as long as I touch her elbows.

3. She can now wave BYE-BYE in response to someone saying it and waving as long as, again, I touch her elbow or arm.

4. She can pat her head when asked "Where is your head?" most of the time. She can also "find" her nose about 70% of the time and can "blow kisses" about as often on command. Again, I have to touch or hold her arm.



Progress has been made. They are all really good developmental steps to have reached... IF she was 1 or 2 or even 3. But she is almost 9. It took her over a year to learn how to clap her hands with me touching her elbows the whole time. OVER A YEAR.

So how long will it take her to be even remotely close to age typical development? At the moment I would take her having all the skills of a 3 year old! Will she ever even reach a 3 year old level in all her skills? I really don't know. But I know that aiming low will not serve her well.

She is my daughter. I try hard to not compare her to others that have come from her background. She seems some days to be alone in her fight... IS anyone out there struggling like my little girl?

How long must we wait for things to turn and start moving more quickly? How long must we wait before she stops acting like she is mentally insane and trapped inside herself just because we go to the grocery store? How long must we wait before people stop assuming she is deaf and or blind because she will not acknowledge them? How long? How long? How long?

How many licks does it take to get to the center of a tootsie pop? It is just a simple sucker. It's not even that big. How hard can this be to figure out? The best information I could find on Google was between 150 and 411 licks. I guess if they can't figure out an exact number for this question, then I'm not going to find an answer to my question of "How long will it take Yana to ....".

Hope is a beautiful thing. So I hope. Each day I hope, because one day I might just have my answer!

7 comments:

  1. What a beautiful post. A friend of mine published it on FB and I stopped to read. Thank you for bringing this daughter into your family. Thank you for hoping for her. Thank you for journeying into the unknown with her. Thank you for saying what is hard. I don't know you and I don't know her, but what I find myself most hoping is that she would know she is loved and that you would know that she knows. May you find the Grace and Power you need to love her and the rest of your family every day.

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  2. Though my nephew did not have the same beginning as Yana, he does have Down Syndrome and I remember his mother asking the same questions. Will he ever walk or mimic words; why does he make such noises? And for the first time at the age of 3 he can walk, run even. The occasional understandable word comes out intentionally. And these things have happened after all that time with a wonderful start. Yana too will overcome her early times of life and with your love and support will grow and gain so much. Have faith in yourself as a mother as well as in what God has in store for her. Her life has purpose and she will accomplish much in the time to come.

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  3. A beautiful and honest post! Thank you!!!

    I can't imagine....I am sure it is hard. Hard to not know. And you aren't worried except you want the best for her!!!! It is hard!

    I remember when some of our children have come to us thinking these same things....how long will it take for them to trust me, how long for them to love me, how long for them to accept me, how long for them to start getting the rules, how long before they .......... and each one has been SOOO DIFFERENT from the other.

    So hard as a mommy you just want the BEST for your child- whatever that is for them. And sometimes we just don't know.

    PRAYING for your journey, especially the harder parts.

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  4. I believe that even in asking the question you, as her mother are taking a huge step. Because sometimes its easier to not ask for answers, fear.But the fear of the unknown can rob us of all the joy of today. Our journey looks different than yours but I can tell you that I too wrestle with balance. How hard do I push, how much is too much. I can tell you that unconditional love goes a long way. It seems like you have got that one down. I have found keeping a notebook has helped. To be able to grap my little spiral notebook when it hits my fancy and log the new things.( The lines have blurred some and I forget how bad it was in the beginning) The signing time videos and learning sign language opened up the doors of communication for our little one. Hugs and grace to you....

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  5. Kelly,
    please please email me at sjomaples@yahoo.com. I came across your blog by "accident" although it really was NO accident at all. I have the EXACT issues and feelings about our daughter with Ds that we adopted and I'd like to share with you.
    Warmly,
    Sarah

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  6. Hi Kelly, popped over to check out your beautiful family. And wanted to let you know that we have had our daughter Evangeline home for over two years. She is now five years old, and as of yet doesn't talk, or sign, or wave. We play the waiting game at our house as well, and try to learn more about God and each other in the process. Hang in there.

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  7. Refreashing to read this post - although I know it was a difficult one to write. We too face similar challenges at our home. It can be so frustrating and discouraging sometimes.

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