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Wednesday, July 20, 2011

Half Way Day~

We are halfway through our time at the Kaufman Children's Center and all I want to do is hit the rewind button and start all over.  Not because it has been an easy time, not because I want a do over, but because I don't want this time here to end.

We ask for prayers to guide us on the shortest path that will lead Luke and the other 5 children attending the SPEAK program to normal speech. 

I cannot begin to tell you how these children have left a footprint on my heart.  These babies struggle for each single sound, each single syllable, each single word...and still they don't give up.  They continue the fight to conquer the neurological demon, Apraxia of Speech.

Luke is such an amazing 2 year old little boy.  He continues to WOW us on a daily basis. 

His brain is literally being retrained every minute of the day~retraining it to speak.  Nancy reminded us about what happens sometimes when you put a dollar bill into a coke machine and it spits it back out, this was the PERFECT analogy at what happens to our children with Apraxia.  They get the information, but their brain or their mouths spit it back out.  We have to keep trying to put that money into the machine, until it accepts and recognizes it.  And with her help, we are becoming masters at making this happen. 

Probably the biggest thing that we will take home from the 3 week stay is how we learned to reword what we say (to make it as close to the word using an approximation that we can) and how to rephrase our questions to "shape" his replies.  We also learned how to implant language or words that he can reuse in our speech.

Today, I was able to come from behind the glass and teach with Nancy Kaufman during one of Luke's speech therapy sessions.  This was an unannounced thing, so there was no way to prepare.  I guess it really is something that this whole journey has lead up to...we are Luke's first teachers, his first models and we must be the BEST.

I have been secretly wanting to work with Nancy during a speech session, since the first time we came to the KCC.  It is so hard for me to sit behind the glass and watch Luke without having a part in the therapy.  Don't get me wrong, I love watching him but it is very painful to sit and watch how hard it is for him.  Tears are shed, from him....from me.  We cheer, take notes, video, take pictures and try to remember everything that we see and hear.  I feel like a sponge trying to absorb it all.

I can't believe that this is really our 3rd trip here.  I would love to be able to say that it will also be our last, but I don't think this is the case.  As well as Luke has progressed, he still is not where he needs to be in terms of expressive language.  We even discussed how many times Nancy would like to see Luke in the next year today and will continue the coversation. 

As we learn how to "prompt" and "shape" what we want Luke to say, I can't help but wonder what would happen if we could live here for 3 months, 6 months, 9 months, even a year and receive the BEST of the best therapy that the world has to offer.  That is how I am, I cannot stop wanting the best for my child and for all of the other children who still don't have their voices.

Reposted from Lauren, Noah's mom~
Therapy for Apraxia does not happen as intensely as 3 sessions of speech a day IF we want to find the road to recovery -- it happens every time he opens his mouth and we find the best 3 to 4 words to require him to repeat to us to develop the neurological pathways from sound to speech. He wants to talk with understandable sounds that create words, we want to teach him, and we are where we need to be right now!

The harsh reality is that there is NO place like the KCC and there are NO other therapists that we have found that can do what Nancy Kaufman's KSLP program, taught by herself and her amazing therapists, can do.

With each child we see in our parent meetings, those that truly understand what is ahead of us realize that each of those "successful children" on the videos are those that have spent extended periods of time at the KCC (meaning several months at a or even years). We feel that we will find a way, but until then we WILL NOT give up on doing and learning all we can! 

We have met the most amazing family during this time. They are Mary Clare and Brad Tarpley. The are from Georgia and we have no doubt that they will be a part of our lives from the day we met forward. They have Maggie who is 8 and a future speech therapist and possibly Noah's wife (lol!) -- she is a precious blessing that is so very loved and appreciated by anyone that gets to spend any time with her! Her little Georgia accent is the cutest thing you have ever heard (any words from a child are like music to our ears)!

They are here for their amazing little boy, Luke, who is 7 months younger than Noah. He and Noah are so much alike. So bright, inquisitive, loving, and hard-working! They were fast friends and it is a beautiful thing to watch them be "normal" together. 

Their families share the same agenda: to help them recover from this neurological monster we call Childhood Apraxia of Speech!

I feel overloaded ... so I imagine you all will, as well, after reading this. Please know that we continue to believe and trust in the Lord and His journey for all of us.

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