*squeeeeeze*

April 3rd, 2013

 

At our house, the sort of a little person who is a round, soft, squeezable, and pink little person is called a Shmoo.

 

This little Shmoo…

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…learned in a few days how to position herself correctly in her walker by pulling up to stand holding onto it, and then deliberately turning herself around to face outward.

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In the same few days, she learned how to turn her walker to go around a corner.  Miss Rose, the physical therapist, teaches the mama how to teach her, but it wouldn’t work if she wasn’t one motivated little Shmoo.

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She knows her next goal is to stand alone.  She takes great glee in trying very hard to balance herself.

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She’s getting stronger and more coordinated all the time.

And that’s good, because she’s still growing.  The child who “won’t grow because of her disability” is 37 x 37 now.  She’s 37 inches tall and weighs 37 pounds, and by gum, at eleven years old she’s learning to walk.

“Because of her disability,” indeed.

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Speaking of growing…

Little Shmoo, are you hungry?  It’s time to eat!

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Walk, walk, walk to your highchair!

Good turning!

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It’s time to put your bib on!

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And say, “Thank You, God…”

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“…for yummy supper to eat.  In Jesus’ name, Amen.”

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Did I mention the word squeezable?  “Mama has a Katie; Katie has a mama,” sings the mama to her Shmoo.

*squeeeeeeze* 

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P. S.  Once upon a time, a mama made matching flannel nightgowns for her two little girls, ages seven and four.  She tucked them away in the attic, just in case God would send her any more little girls.  And now she’s glad she did.  Because He did!

 

my girlies

 

 

 

 

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31 Responses to “*squeeeeeze*”

  1. Rachel says:

    Shmoo! That’s perfect!!!! It by far beats our “pudgie wudgie kiss and lovgie” here.
    Congratulations on all of the milestones, Katie! What wonderful reasons to smile!
    (And, Susanna? Can I just say that I am continually impressed that you have your girls’ hair done all the time? Oh my goodness. It would certainly lessen the motley factor here if we could ever put a brush and girls’ hair together!!!)

  2. Desi says:

    A little-big step for Katie is a huge step for childrenkind all around Eastern Europe! God speed, little Shmoo! You are absolutely adorable!

  3. Eileen says:

    Dear Susanna,
    All I can say is, “May God bless you for all you have done for this little ‘shmoo’ and for all his precious children whose lives have been touched by your unending compassion!”  And also, thank you for sharing Katy with us!  It makes me so happy to see how happy and healthy she is!

  4. Cassandra says:

    My goodness, these photos are so sweet they are practically edible!  Is it the photos you take or is Katie this engaged? 
    Her eye contact seems terrific and not at all “institutional- autism” like (which are my words and not a dx you ever mentioned )
    I love the one photo where you two are snuggling.  It’s evident that she has claimed you as her own.  And equally evident that you have claimed her as your very own daughter.  
    She must be getting really good at weight bearing activities since it appears she’s hoisted herself over the transition from kitchen to family room. God is able.  He is safe to trust.  
    I have an odd question -so much so that I’m not certain how to frame it so I’ll just spit it out. While Katie appears to be functioning somewhere b/w 9-12 months, is there a part of her that strikes you as 11-ish?  Like, is she sort of more aware of dynamics that, say, your Verity is not though they are similar in other regards? Is there a sort of old soul about her that could only be the byproduct of 11 years of life?  I imagine the answer to this to be “Yes” because of our amazing creator who makes no mistakes even when others consider our lives to be an error. Then again, God is gracious so maybe He choose not to make Katie “developmentally appropriate” in light of her abject living conditions. 

  5. Linda says:

    How wonderful to see Katie’s amazing progress! Thank you so much for squeezing an update into your busy schedule.

  6. Becki says:

    Go Katie, go! She is amazing. Also… I was so struck by how much Laura resembles Verity in that photo! x

  7. HeatherK says:

    This is so beautiful to read.  Precious Katie, I am so happy for you. 

  8. Lois J. says:

    I love, love, love these photos, too! I could just snatch her up and give her some ‘schmoo’! I’m with Cassandra in the the question she posed….I’ve wondered the same thing.

  9. Susanna says:

    Hi Cassandra! Actually, Katie does have some degree of institutional autism, as mentioned in the following posts:

    http://theblessingofverity.com/2012/05/open-eyes-open-hearts-open-homes/

    http://theblessingofverity.com/2012/08/providence-in-pleven/

    http://theblessingofverity.com/2012/08/what-katie-loves-best/

    http://theblessingofverity.com/2012/09/he-shall-give-you-the-desires-of-your-heart/

    Because of her unusually long history of unusually extreme neglect, it’s impossible to make any predictions about how she’ll continue to progress, how much of her autism will subside, and how much will be permanent. She would not be described as having severe autism, hence the eye contact. She has many sensory issues and nervous habits. She was brain-damaged by being starved of everything that grows and feeds brains, so that in conjunction with the autism makes her developmental age very delayed. She is socially intelligent enough to sense who is repelled by her, is uncomfortable around her, or sees her as a curiosity, and who accepts and loves her. :) But she is as innocent and unaware as a baby in every other way. :) She’s a puzzle in many ways and may always be, since she is essentially non-verbal. :) You can see how much all that bothers us. :)

  10. Deanna says:

    Way to go Katie!  What an amazing girl you are!
    We thank God for your life and that we have the joy to know you!
     

  11. Marine says:

    Amazing!!! What love and tender care can do!!!

  12. Jennifer says:

    It’s so wonderful to see Katie making such amazing progress!  Praises be to the Lord for the blessing her life is to so many.
    I’m curious to know if you have been trying to teach Katie any sign language in addition to speech.  Our oldest son was nonverbal until he was almost 3 but he made tremendous strides once we started pushing sign language on him.

  13. Hannah says:

    Hooray, Katie! What amazing strides she has made. What a blessing it is to follow her journey.

  14. Alex says:

    My littlest was ‘Schmoo’ to me since the minute he was born. Such a great word! I am so thrilled for Katie, thank you so much for continuing to share her story. 

  15. lizzie says:

    What a blessing.  Precious and good gifts. I love the pic of the two of you together!

  16. Katy’s progress is always of interest to me, and I thank you for sharing. Katya is non-verbal, had a huge degree of neglect and abuse, and has tremendous brain damage to the point that Dr. Ben Carson said she medically speaking shouldn’t be able to do all that she does do. His polite words were that he would not have been surprised to see her “conscious, but no interest in life”.  Instead, she is going to school and learning all kinds of great things, even though she is non-verbal. Katya does use limited ASL to communicate with us now, and more and more uses her body language and facial expressions for communication as well. She was given a initial Dx of “institutional autism” when she first came home, and had a ton of sensory issues etc. I know Katya and and Katie’s stories are vastly different, but they have so many parallels I do enjoy watching. God bless you . . .

  17. Cinderellamommy says:

    Love, love, love! What a joyful blessing of God! Thank you for sharing!

  18. Gina in Spain says:

    LOVE that little Shmoo!!! : ))))

  19. Gina in Spain says:

    I esp. love that pic of you and her , while you sing….hugging….gladdens my heart!

  20. Jill says:

    love.love.love.  Her smile is so beautiful!!!! I love seeing all that she is learning!

  21. Susanna says:

    Hi Jennifer! Thanks for your question! We haven’t seen a lot of success in teaching Katie any sign but “please.” Just this past week or so, though, after working on it for over a year, once in a while she’ll mimic the sign, “all done!” Yay!

    She’s made the most progress in her physical health and growth, attachment/bonding/emotional health, and gross motor skills. With speech and fine motor skills, it’s reeeeeeally slow and sometimes she’ll go for months with no progress at all in these two areas. She was making slight progress in speech (imitating a few sounds), but then dropped it entirely for six months while she worked on gross motor. We’re now seeing some of her imitation of sounds come back, albeit sloppier than they were before right now. She’s still expanding her receptive language in spite of not progressing in expressive language skills. :) And she certainly manages to communicate to us most of the time. This is made easier by the fact that what she wants to communicate is on such a simple level, so if we’re guessing, we’re only guessing between a few possibilities. It would be much more difficult if she was much more advanced cognitively.

    Her sensory issues and cognitive delays interfere with her progress in fine motor, so for fine motor, we’re still working on laying the groundwork of having her tolerate more and more from a sensory standpoint. Once a texture or activity no longer over-stimulates her immediately, we have a window of opportunity to work with, helping her get used to a new fine motor skill. One of the biggest areas we constantly work with is in not automatically shaking an item out of her hands (another form of throwing). If she has a small object in her hands, even one that she’s used to and will tolerate and hold and move from hand to hand and turn it over, she’ll shake it if it makes any noise at all, and if not, she might attempt to tap the side of her head with it, but in any case, she’ll shake it off her hand before too long. So at that point, I put it back into her hand and say, “Put it DOWN,” while hand over hand having her put it down, with light pressure on her hand onto the item so she can feel how to set something down appropriately. I then put it back into her hand several more times and have her practice putting it down the right way several times. She’s doing better with this if we’re there to remind her verbally to put it down before she shakes it off her hand. She tends to release her grasp prematurely, even when feeding herself. She now can not only push buttons (not too small or hard to push), but she can also squeeze a bath toy to make it squeak (and then began squeezing her food, like sandwiches, haha!), turn easy-to-turn pages, use her fingers to spin a noisy object on a crib toy, use her fingers to rake and sometimes use the “three-jaw chuck” pincer motion. She can pick up her cup and bring it to her mouth, but because of her automatic stimming habits, her fingers start scratching the sides of the cup which of course loosens her grasp.

    For her, the line between under- and over-stimulated is wider than it was when she came home, but still pretty narrow. This means if she’s not busy doing something, she’ll stim, and if the sensory input from an activity is too much for her, she’ll go into overload, which for her means over-excitement–flapping of hands, vocal noises like exaggerated laughing or throat noises, and making funny facial expressions. :) She is motivated by lots of sounds and noises, but tends to be easily overstimulated by them as well. Most of her stimming involves making sounds of one kind or another. Deep pressure input helps calm her the most.

    Cognitively, she needs a pretty strong and obvious motivation to learn a new skill.

    I’m writing quickly what I can think of quickly, and leaving a LOT out due to time, but maybe this will give a good overall idea of Katie’s issues. She has come SO far compared with where she was 16 months ago, especially since her history stretched out for nearly ten years before that. :) We have all the time in the world for Katie to learn, and because we understand why she is where she is, we don’t feel disappointed where she’s not making progress, or where it’s slow, or even if she drops a skill for a while. :) Baby steps. :)

  22. Sarah says:

    I loved this update! Katie has made amazing progress. And she is simply glowing with happiness! What an amazing difference a family, love and care and many prayers will do!

  23. Louisa says:

    Loved the sharing of the PJs…I did this with little dresses from my first 2 girls now 22 and 20…we are just working into them again with the 7 and 3 year old!  What cherished memories of the first girls…everytime I see the little ones in them they just give me the biggest smile!  What a gift of something so small:)
    Love seeing Katie’s progress…such an encouragement!  What a beautiful gem you have in your very home!!

  24. Holly D. says:

    Susanna, I was wondering how you do the deep pressure for calming as I would like to try this with my daughter when she gets too overstimulated. Is it done on a certain part of the body for more calming, or how if you don’t mind sharing

  25. Rebekah says:

    I have been reading your blog for several months now, after finding it through another blog.  I can’t even tell you how blessed I have been through it, especially through your sacrificial love and care for Verity and Katie!  You are such an inspiration!  I have been delighted to see what Katie’s been able to learn, after her difficult “start”, and am eager to see more progress as you continue to help her succeed.  Your love and sacrifice for the girls is such a wonderful example! 
    May the Lord richly bless your family for the way you are blessing His little ones, including Tommy!  

  26. Jane says:

    What a generous and uplifting update! YOU GO KATIE!  You are a beautiful child of god regardless of your progress or not, and we are all cheering you and your wonderful family onwards! 

  27. Susanna says:

    Hi Holly! I talked about deep pressure a little bit in this post: http://theblessingofverity.com/2013/03/hi-everybody-its-me-katie/

    I’ve been thinking about the possible usefulness of weighted vests for her during times when she needs to sit still. Anyone who sees this comment and has experience or other input for me about these, I’d appreciate it! :)

  28. Carolyn says:

    Such a happy post for your little Shmoo!  She is really an impressive little fighter with an impressive family fighting right along with her.  God really put her in the right family.

  29. Jen says:

    I just love your heart Susanna!  Lovely little Shmoo :-). I am using the book, ‘Slow and Steady Get Me Ready, by June R. Ober lander,’ with our oldest daughter (has a rare genetic disorder called Wolf-Hirschhorn syndrome.). Have you checked this book out?

  30. Lorena says:

    Such a sweet post.  It still squeezes my heart when I realize yet one more time that my oldest is exactly Katie’s age, and to think of her development having been arrested for so long.  Katie inspires me to keep pushing for the “impossible” – for nothing is impossible with our God!!

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