(Originally appeared in the Franziska Racker Centers‘ Winter 2011 Newsletter. Reprinted with permission.)
From July 7-9, 2011, I was fortunate to have the opportunity to attend the National Conference on the Childhood Apraxia of Speech with the help of Racker Centers where my son has been receiving services. Before attending the conference, I knew very little of my son’s speech disorder and I had no idea what to expect. I was amazed at the end of the weekend how much information there was on this disorder, how widespread Apraxia of Speech is and how much I learned. In my eyes, this conference was the equivalent to many football clinics I’ve attended. At those clinics, I had the opportunity to listen to some of the best coaches the game had to offer. This particular weekend in San Diego I was able to listen to some of the best speech pathologists in the country talking specifically about my son’s condition.
I took full advantage of everything the conference had to offer. I attended every session I possibly could. In between sessions I searched out a few of the speakers and asked them very specific questions regarding my little guy. Each and every person I spoke with was very accommodating of their time and offered unbelievable insight. I was very fortunate to engage in conversations with families and speech pathologists from all over the country, such as Texas, California, Oregon and Washington. We shared our stories and insights to our child’s speech disorder. One thing I learned from all of those conversations is that my family is extremely fortunate to live in a supportive community that provides many of the necessary services in assisting our son.
One particular family whom I met at the conference, which stood out, is Jeff Rainess and his family from New Jersey. Jeff is a high school football coach and like me, just a regular guy. He stood up and shared his family’s emotional and inspirational story. He spoke for approximately thirty minutes as he shared the commitment and sacrifices his family has made in the pursuit of treating their son. Jeff was passionate in delivering his speech. This was the best session of the weekend for me because Jeff was talking my language…..I felt like he was speaking to me. He wasn’t using four and five syllable words (that some of the specialists use) in describing his son’s condition and treatment. He was a ‘real’ person, from a ‘real’ family, sharing a ‘real’ story. At one point Jeff’s son stood next to him and said a few words that a couple of years ago would have been very difficult to accomplish. Jeff and I have maintained contact since the conference and I am hopeful that our families will reconnect at the 2012 conference in Boston, MA.
MORE ON THOMAS AND JEFF…
Thomas and Judy Murphy noticed that their son, Thomas, was not reaching milestones in the same manner as his older sisters had when Thomas was about one year old. They remember all of the comments that people would say, “he’s a boy,” “he’ll catch up,” “don’t compare siblings.” However, they had no question in their minds that Thomas was delayed. His speech was the most noticeable. Thomas and Judy began the process of searching for help. Thomas received Early Intervention services and was diagnosed with Childhood Apraxia of Speech by the age of two. It was soon after that the Murphy’ discovered Racker Centers’ programs. According to Thomas, “Racker Centers and the amazing staff, providers and teachers have been a God-send to us. The ‘team’ as we call them, is a collective advocate for our son. We work together passing suggestions and experience.” He continues, “We are blessed to have the folks at Racker Centers in Thomas’s life. Having all of his daily providers in one place working together is such a benefit to him and to us.”
Dave Hammer, a noted expert on Apraxia of Speech, along with Kathy and Sharon from the Childhood Apraxia of Speech Association of North America CASANA, approached Jeff two years ago to help with a session at the annual conference. He and his wife, Jennifer, are very proud to be associated with CASANA and honored they have been asked to speak at the last two annual conferences. They have worked very hard at finding the best approach to battle their son Jake’s Apraxia, and CASANA has been a huge part of that. Jeff states, “Our son, Jake, is 7 years old now. He still goes to therapy for speech. He is a very normal little boy with a great vocabulary. His speech isn’t perfect, but you can understand everything he says. He is entering the 1st grade this year and is in a typical classroom. He loves sports, the Wii and playing with his brother and sister. He came to my HS football game the other day and promptly told me afterwards that, ‘Daddy, your defense REALLY needs work!’ He’s right- and it was sure wonderful to hear him say it.”