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Thursday, November 25, 2010

What Brought Us to Kaufman?

I have been asked by LOTS of people...how did you find out Luke had apraxia of speech? 

How did you know? 

How did you find Nancy Kaufman and the Kaufman Children's Center?

And the story goes something like this...when it was first suggested that Luke could possibly have apraxia of speech...I started researching. 

Honestly, he was only 18 months at the time and I still was giving him the benefit of the doubt.  He was a boy and he had been a little later in all of the developmental milestones.  I went back and forth with it over the summer~wrestling with the notion, the idea and the what ifs.  I also asked others, sought help and advice, and researched the best practices. 

Then, when I couldn't find anyone to diagnose him by the end of summer, had added additional speech and still wasn't seeing the progress that I thought he should be having~I kept going.  I kept going when doors were shut.  When people tried to stop us.  When others suggested that this was the best they could do and that we should wait. 

I kept going until this search brought me to Nancy Kaufman. 

By October, I had attended her conference on apraxia in Jacksonville, Florida.  I stalked her at the conference. (Yep, you read that right~stalker needs to be added to my profile)  I sat front and center, asked her questions at every break, showed her a video clip of Luke, even braved asking her for her autograph (I really wanted a picture, but was too embarrassed to ask) and took her up on the offer for parents of apraxic children to eat lunch with her. 

At lunch, I tried to listen more than talk~and believe me...it was hard.  I let others tell their stories and tried not to tell them too much, although some of them were just beginning this journey and had so much to learn.  It was so difficult not to share everything I knew about apraxia with them~I had to quiet myself and just wait. 

At one point during lunch, I heard Nancy say that her contribution to speech and language pathology was her clinical work~she was first and foremost a clinician~she lectured and spoke to help others so that they would use her techniques and kits correctly (to benefit their clients). 

When she said that~I knew she was the "real deal".  And I said, so you don't just preach from an ivory tower~it was at the moment that she looked at me and I think...got me.  I already got her~got her philosophy~got her mission...and I wanted Luke to experience it.

I sat through the rest of the conference watching video after video of kids that came to Nancy Kaufman being non verbal and left with the gift of language. 

I saw a little boy that came to her, much like Luke, saying very few words....and then I saw him at 18 years of age speaking clearly~extremely articulate~you could not tell that there had ever been a speech problem.  He spoke of his appreciation for Mrs. Kaufman and his parents getting him this help so early.  Then, he told of his plans for college. 

She really was a miracle worker.  She didn't really mind what the disability was~down's syndrome, autism, or CP~she taught them to speak.  

These videos were life changing.  They brought tears to my eyes.  I already knew that her methods would be best for Luke~that's why I had attended the conference.  But after seeing video after video of successful interventions....I just knew that I had to bring Luke to her. 

He had to go to her center for therapy and I would stop at nothing to get him there.  I am that kind of person.  I don't take no for an answer.  I guess I can thank my parents for instilling this in me.  They have always told me that I can do anything.  They did everything in their power to make me believe it.  And for this...I thank them.

I spoke to Nancy at the next break and inquired about the 4 day treatments that she does with patients.  She told me that majority of them were out of state visits, some even from out of the country.  I asked about the cost and about the therapies, etc.  I got all the details that I could.

Then I sat back down, trying to figure out how we would get there. 

My husband had already told me that we weren't the "Newmans" from the Young and the Restless.  We couldn't fly in specialists and fly all over the world trying to find an answer for Luke's lack of speech. 

But still, I couldn't stop thinking that this must be done.  I knew that even though I had learned TONS, I hadn't learned enough to get Luke to speak.  I couldn't do it myself~and this was a big task~something that I would have to have assistance with. 

I texted my husband to pick me up 15 minutes before the conference ended, knowing this would give me a few minutes to get Luke from him, bring him in and hopefully "run into" Nancy Kaufman at the end.  I didn't really tell Brad my plan, but he knows me...he knew I was up to something. 

I waited for the SLPs to clear out and brought Luke into the conference center.  I let him run into the ballroom~and intuitively he ran right up to Nancy.  She stopped everything and looked at him.  She spoke to him...saying Hi Luke!  And he waved to her ;) 

(Yes, it was hard for me to hold it together~but I did.) 

I held it together long enough to hear her say...Yes, he has apraxia~Yes, there was a cancellation~Yes, she wanted us to come to Michigan.  YES, YES, YES!!!

And that my friends is the story...

We leave Sunday to visit the Kaufman Children's Center and to start the 4 day treatment program with Nancy Kaufman.  We are beyond excited about this opportunity for Luke.  We are "over the moon" about the possibilities that this treatment will bring.  We cannot wait to hear the words that are unlocked. 

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