Nancy Kaufman becomes a household name for us

NOTE: After reading my first post, I realized I didn't include Jason much.  While I do the lion's share of Charlie's therapy, he is supporting us every step of the way.  Nothing is more precious than hearing Charlie work on his words with his dad.  And believe me, you've never seen a prouder man than when Charlie learned to say Daddy in Michigan.  Jason, I love you!!

August 2011 brought the final realization that Charlie did indeed have apraxia when my mom and I took him to see a seasoned SLP in Allen.  Coco found Sally after doing one of her many midnight Internet searches.  Sally was no nonsense and very direct about Charlie’s speech issues. She was convinced has apraxia, even though he was barely 2 years old.  She laid out an aggressive (and extremely expensive) therapy program.  

Sally also casually mentioned an apraxia specialist named Nancy Kaufman who pioneered several treatment methods for apraxia.  I remember very clearly my mom and I eating lunch at Taco Cabana after spending two hours with Sally talking about Charlie and what a hard road was ahead of us.  I was so overwhelmed by Sally’s matter-of-fact diagnosis that I cried most of the way through the meal. 

If we lived closer to Sally and her Allen clinic (it was 90 minutes one way from our home), we might have started therapy with her.  Since we didn’t, I started the search for an SLP in Fort Worth.  Finally in October, we found a clinic in Fort Worth that had a therapist who had some training in working with apraxia.

While Charlie made slow progress with the new SLP through the fall, I continued to research and learn everything I could about this condition that was choking his ability to speak.  Even though he had a few sounds, Charlie still communicated primarily through grunts and gestures.  And believe me, he could be quite animated when he really wanted something.

My mom and I continued our daily research on apraxia, and we found a speech clinic in Houston that was doing an apraxia boot camp the week before Christmas.  So Charlie and I packed up and headed to the Carruth Center in Houston.  The Carruth Center, coincidently, is a satellite clinic for Nancy Kaufman.  There was that name again. 

As I soon learned, Nancy is one of the national experts in apraxia.  She’s been a clinician for 33 years and has developed a line of assessment and hands-on therapy tools that both SLPs and parents can use.  The SLPs at Carruth use her methods almost exclusively, so I got to see how well Charlie responded.  Once again, the pros in Houston agreed completely that Charlie had CAS.   It was hard to hear yet another SLP confirm the hard road we were facing.  

As luck would have it, I found out Nancy Kaufman was scheduled to speak at Texas Tech University in February 2012.  My mom and I made the six-hour drive to hear Nancy’s presentation on “Children Who Struggle to Speak.” The audience was mostly SLPs from West Texas, New Mexico and Oklahoma, with a small sprinkling of parents.   After hearing Nancy talk about the hallmarks of apraxia, I was convinced 100 percent that was what Charlie had.  He WAS the poster child for severe apraxia in my mind.

Among the videos Nancy shared with the group were a couple from her SPEAK program.  SPEAK is her summertime program in which six children to join her team in West Bloomfield, Michigan for three weeks of intensive therapy. 

My mom and I got to have lunch with Nancy and three other parents to discuss our children.  I also ran into (okay, I followed) Nancy in the bathroom, and we talked more about Charlie.  She recommended I send her a video of Charlie in therapy so she could give us her opinion.  In the back of my mind, I was secretly praying we could figure out a way to spend three weeks in Michigan for SPEAK.  Nancy gave me more hope about Charlie’s future than I’d had in months, so I wanted her to see how much Charlie struggled.

Jason put together a 30-minute video, with a Power Point “selling” Charlie to Nancy.  When she called me a week later to discuss what she saw on the video, she agreed with that Charlie was special little boy.  She gave us some ideas to incorporate into his private therapy, but more importantly, she said he was great candidate for her summer SPEAK program...