Monday, June 20, 2011

Bittersweet Blessings

I have mentioned, probably more than a thousand times, how intensely difficult, and overwhelming being at The Institutes is. So by Friday, my brain is pretty much good for nothing. 

We were learning a new board to do with Aviana called a Facilitated Communication Board. It is called an FC board for short. We saw kids type out some pretty amazing things on these boards the last time we were there.

We were to do the FC Board in pretty much the same manner in which we do the Choice Board. We ask Aviana a question, and hold her wrist above the board, and wait for her to answer. As you saw, the Choice Board is just Yes or No. Sometimes she answers very strongly, sometimes it takes a little bit of patience, and sometimes she does not want to answer at all.




This was our very first time using the FC Board, and Spencer asked us what we wanted to ask her. I was spent to the point of not even being able to answer a simple question :o/ He said, you can ask her what her favorite food is? What her favorite animal is? I said, we all love animals so let's ask her that.

He asked me to write down answers on a separate piece of paper. We wrote,

Panda

Dog

Gorilla

Bear

Other

We showed the answers to Aviana. Dave had her on his lap, and was holding her wrist above the board. He could not really see what she was doing, but I was sitting across, so I could see perfectly. We asked her to type out the answer on the board, and held her wrist above. She just sat there, and impatient me, thought it was just going to be one of those kind of days on the board.

We then grabbed the Choice Board back out, and asked her if her favorite animal was on our list. She immediately answered No. We then put the FC Board back in front of her, and asked if she could type her favorite animal for us.

She immediately typed a K. I thought, "Wow! I didn't know she liked Koalas so much." She then went to A, and I thought, "Oh, I get it, she is spelling Cat wrong." She then went to M, and quickly over to A. I said, "Oh my gosh, K-A-M-A, she just spelled Kama!" I burst into tears, and flew out of the room. I was reduced to a soaking wet puddle, and couldn't stop for the rest of our trip. I have yet to retell this story without crying.  

I was so sad on so many levels...

I miss my Kama Girl more than anything in the world.

Aviana could have answered Dog, but obviously didn't want us to be confused with that menace, Rainey.

Aviana has been grieving deeply all this time, and has not been able to express her little self.

She misses her best friend terribly :o(

She will forever be loving and missing her.

No one can ever separate a girl from her dog.

So sad, makes me cry...BIG TEARS!!












In sickness and in health...













On a happier note, we asked her what her favorite food is, and her choices were...

Cake

Kale

Sweet Potatoes

Oatmeal

Other

She typed out Kale??!!

We asked her what her favorite thing to do for fun was....

Park

Costco

Mall

Backyard

Other

She typed Park.

We asked her why she was not enjoying her reading program lately, and she typed out...

Faster.

After 2 full years, we are finally able to rediscover our little girl again.

Did you notice that she typed one of the given answers for all of the questions, except the first one?

Spencer said she did amazing for her very first session, and said don't expect her to do that well on every future session. He said we are going to have to be really patient, and spend a good amount of time using the FC Board. 

What do you think? Pretty cool, right?


40 comments:

  1. Holy Batman, that is such a great story! I am in awe ♥

    We should have shared that one instead of my not so great one :^)

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  2. I got chills reading that. Seriously. And tears. This is wonderful. So wonderful. I can't believe she spelled out Kama. I mean, wow, that's so awesome.

    Okay but I have to say this -- Kale? Does she even eat Kale? Why was that on the list?

    Okay but let's get back to her spelling out Kama. I can see why that reduced you to tears. I mean, wow. WOW! I love those sweet photos of her and Kama, too. So darn cute.

    I hope you have a huge success with the FC board. It would be so great to hear what's on that little girl's mind. I bet she has a lot to say.

    Does she have much arm/hand control? How does she point to the letters?

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  3. The human mind is nothing short of amazing. This story is amazing too. What a sweet girl!

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  4. Congratulations! I'm so glad your precious girl has a "voice" again!

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  5. This is a miracle, but more than that, you know she is still here, still trying, still pulling. Her mind is intact and she is listening to you. Aviana is strong and determined and with you and Dave she can accomplish anything.

    This is as much your accomplishment as it is hers. I am speechless, congratulations honey! :)

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  6. OK...all I can say is holy sh*t! That is incredible!!! Avi is freaking amazing!!! I am so glad you found this way to communicate with your girl and a way for her to tell you what is going on in her little head. You may not get that great of a response next time...but any response has to feel like magic!!! I am so excited for you guys. What an amazing gift to "hear" your daughter tell you how she feels!!! Glad you are home safe and sound.

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  7. Oh wow! That's all I can say! Just amazing. I am at work reading this and trying not to cry!!!

    Love you - Jess

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  8. I don't normally comment (but read and think of you often - was linked here a long time ago shortly after Avi's accident), but this post just wrecked me - absolutely reduced me to tears. SO happy for you that she has a way to communicate, and so devestated about your Kama girl....

    Elicia

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  9. Oh jen you and Dave and Avi are simply miraculous. I'm crying tears of sorrow and joy at the same time. sorrow that she suffered the loss of Kama without a voice and joyful she now has one. I'm in such awww of the human brain and so happy you stretched your own thinking and your life for that matter for avi's healing. Now her little stubborn self can exert her will and give you the silent treatment like only a 4 going on 5 year old should:0)

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  10. VERY cool - I'm getting intrigued - please keep posting this kind of stuff!

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  11. She's in the there! Your healthy brained girl is in there. Her body can't do the same things but her BRAIN is there. How amazing! I read this to mom and she's amazed too. Hell, Aviana is ahead of Valentina when it comes to reading and writing! I can't imagine how tiring and what an emotional toll this all takes on you but look what you saw. I'm so proud of you for doing all this hard work. I cannot imagine what you go through, MY mind cannot comprehend it, but Aviana's mind CAN and IS taking it all in. Love you.

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  12. Jen-

    AMAZING story! This gave me chills and made me cry as well. It is great to see all your hard work paying off and find a way for Avianna to communicate so clearly. It breaks my heart that she is missing Kama. She is a sweet girl and has a wonderful mother! Thank you so much for sharing, it is truly an inspiring story!

    Michelle

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  13. Amazing. That girl is simply amazing, Jen. :)

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  14. Crying tears of joy, amazement, awe and sadness on her grief for Kama. ((HEAVEN HUGS Kama girl! You did good with her!))

    A window has opened for you. She has been sitting there wondering when you would get around to it. Can you imagine what relief she must of had when you first started that board? That is probably why she did so exceedingly well. She's been waiting to communicate fully! Continuing my prayers!

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  15. This was a tear jerker! It is absolutely amazing and I will continue to pray for Aviana's success and your patience.
    Melissa

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  16. Chills....tears....chills....tears....OMG!!! Jen!!!! OMG!!!! I LOVE LOVE LOVE LOVE LOVE LOVE LOVE this post!

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  17. nothing short of amazing. i am so glad she is able to further communicate with you. light speed avi. i'm in awe

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  18. Your daughter KICKS ASS!!!

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  19. Are you SERIOUS? :) :) :) :) :) :) :) :) :) :)
    That is the most amazing thing ever!!! I can't believe how brilliant she is! It is so reassuring to know that she is thinking and aware and able inside. What an uplifting moment to experience. By giving her this new outlet to express herself, she is gaining what she really wants and needs the most, to be heard. Of course this new outlet wouldn't be possible without all of your hard work getting her to that point. Also, Kama is still helping her heal. By Avi spelling out her exact name, showed you so much more than picking out of a lineup. You now know really what she can do and Kama inspired that inside of her.
    Truly and completely beautiful.

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  20. Awesome!!!! My God!!!! She can communicate with you. What a breakthrough!!!!! I have chills.
    God Bless!!! You guys are fantastic!!!!

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  21. Wow! I can't wait to hear what she says next! :)

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  22. That is freaking amazing!!!!! maya can not spell and can only read a little, (I should say she can spell her name and stuff). I would have cried and cried and cried along with you.
    How amazing what an excellent way for her to communicate.

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  23. OMG......that is so freakin awesome!! Reading this post just made my night. Finally she will be able to communicate to you all what's going on in the little mind of hers. Congratulations to you all, keep up the good work it is definatley paying off. OMG....I just can't imagine how you felt when she spelled out KAMA's name that is so amazing.

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  24. What an amazing discovery, to have found your daughter's voice! Kudos to those who figure out these ways to help people like Avi be heard and to contiue moving forward in so many ways. What a blessing you and Dave are to her. I'm very happy for all of you to have found this and other ways to communicate with each other.

    Friends of ours have a daughter with Downs who is not verbal at the age of twelve. She has what they call a Dynavox V...communication device with keyboard run by Windows. (I just called my friend to ask questions). She also said the Ipad 2 has special needs program you can download. She's looking into that, just to see if it would offer more for her daughter, though what they have has been great. The Ipad is cheaper, about $500, whereas the Dynavox V cost about $6,000. Their insurance (BI waver, I think she said) and Medicaid brought down the cost quite a bit, though. Applications on the VOX can make it speak, they can add what they want, and teachers at school add things (spelling words, numbers, etc) too.

    You might not need anything further than what Avi is using, or will learn about future options as she grows, but just wanted to share what I know from this friend.

    Again, your story is truly a miracle. I know this doesn't change Avi's situation or all the hard things about that...but what an encouragment to know she is thinking hard in that beautiful little head of hers. I pray for her often, as I check in to read about your family.
    Nancy in the Midwest

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  25. Me again to add that my friend said they "graduated" to the Dynavox. They were able to use try out other devices, and when their daughter showed that she could operate this one, they ended up with this option.

    Nancy in the Midwest

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  26. Duh. What I wanted to say is that the VOX has a voice. It speaks for my friend's daughter. She can make her choices and the VOX speaks. She has icons she uses, too. I'm not sure if she is able to type or just uses the icons. My friend hasn't explored the Ipad 2, but thinks it probably will have a voice.

    Again, I just wanted to share what little I know from my friend. I'm sure you know so much more about all of this than what I can offer.

    Keep up your amazing work. I can only imagine how much less frustration Avi would have, being able to communicate with her FC board. She must be thinking, "At last!" It all shows how her little brain has been absorbing language and information all this time, growing right along with her long-legged little body.

    Nancy still messing up in the Midwest

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  27. Um. Give me a second...I fell out of my chair and have to get back up to my keyboard....


    ARE YOU FRIGGIN KIDDIN ME?????????????????????

    Seriously? Jen - do you realize that your brain-injured child reads and spells better than most kids her age????????

    Okay. That's it. You've offcially blown my socks off...if you keep doing this you're going to get a peep show! ;0

    AVI!!!!!! SO PROUD OF YOU GERL!!!!!!! YOU are SUCH a daggone FIGHTER!!!!

    I love you Avi and think and pray for you EVERY SINGLE DAY.

    YOU, all of you, seriously have your act TOGETHER!

    Dang! WOW!

    Andrea

    (Great..now I feel pressure to go teach my 4 yr old Aven to spell like Avi can. thanks alot Jen. ;)

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  28. Jen, this post needed to come with a warning label. "Caution reading this post will leave you in tears." I'm sitting here at work sobbing with tears streaming down my face. My co-workers must think I'm nuts. :O)

    I can't believe she spelled out Kama. This whole post is amazing. I'm so happy for you guys and your new form of communication!

    Dana

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  29. WOW. This was absoltuely amazing and brought tears to my eyes.

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  30. Whoa...This is SO cool!

    Audrey is 5 and can only spell her name and Mommy and Daddy. She for sure doesn't know how to spell our dog Maggie's name.

    You must be so proud!!!

    I am so happy for you guys and Aviana that you have an effective way to communicate.

    I pray that this is only the beginning of many, many, many breakthroughs.

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  31. <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3 <3
    (i wish i could make REAL hearts on pc like you can on mac)

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  32. Your struggle has yielded HUGE blessings!
    Thank you so much for sharing your ongoing story with us... It breaks my heart when scientists and doctors lead us down the path of negative probability and take away hope for what IS possible.
    Thank God this institute you are working with exhists and believes in the possibilities!
    Aviana must be so relieved to have her voice again :D

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  33. Avi just graduated from cool chick to totally awesomely way super cool technology chick.

    Bittersweet blessing as you said. I know that through all your amazement you are also heartbroken that she misses her loyal friend as much as you do. However, how cool is it that she felt Kama's love even after her brain injury?
    Dogs are simply amazing and I am sure that one day Rainey will be just as good of a therapy dog as Kama was.

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  34. Wow, Mama! What an amazing amazing thing to give your Avi her 'voice' back!

    And, I know that sometimes, on our own journey (with developmental delays) I just need to see SOME progress, however tiny, to keep me hanging on. To give me the strength to keep on keeping on . . . and it always seems like just when I reach the point that I NEED it, my girl gives me something. I've been reading lately and I know that the program has been hard and frustrating and exhausting, but wow! Your Avi gave you something BIG to remind you that "progress" IS happening, and to give you some strength to keep on keeping on (b/c its all we can do, right?!)

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  35. Breaks my heart to hear about Kama, but so overjoyed that she has a new way to communicate!!! Just amazing :)

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  36. What an amazing story. Thanks for sharing it with us. Can't wait to hear more about this program she'll be doing.

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  37. Since you are @ this point. check out...
    http://www.proloquo2go.com/

    local spec. ed teacher

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  38. another SpEd teacher checking in saying you may want to look into a MyTobii eye gaze device. It is amazing and has absolutely "unlocked" a student of mine with CP who is non-verbal and has limited motor control.

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  39. Absolutely, positively wonderful!! There are no words... just WOW!!!! Go Aviana!!

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