Early Advocacy Made the Difference

By Sheri Larsen

As the mother of three young children, I figured I’d seen it all from ADHD, tonsillitis, surgeries, colds, and runny noses. I was wrong.

CJ was born on a crisp November day in 2003, two weeks earlier than expected, and with a true knot in his umbilical cord. He should not have survived.

Feeling tremendously blessed, we took CJ home and, for the next six months, went about the busy life of raising four children. The latter half of his first year was spent with picture books in his hands and puzzle pieces scattered on the floor. He was fanatical about pictures. So much so, that by twelve-months old he had mastered 60-piece puzzles with no aid at all, pointing out objects in the pictures. He figured out how to communicate his wants and needs. I used to joke, calling it our private language. He excelled in every area of growth, except for the normal sounds babies make.

His first birthday came and went, but did not take with it his inability to make sounds other than the grunts and groans we’d grown accustom to. With no improvement in articulating formidable sounds over the next months, I spoke to our pediatrician about my concerns. She set up an appointment for CJ, who was 22 months old at the time, to be evaluated by a speech therapist. Her trust in me as a parent would never be forgotten.

CJ was officially diagnosed with Apraxia of Speech.

Hearing CJ’s diagnosis being described as a neurological disorder could have crippled me. Instead, I collected research and questioned his two therapists on ways I could help him at home in addition to his therapy regiment. I searched magazines, the internet, and any other source to find pictures of everything under the sun. Shrinking the images and laminating them into a deck of cards made it easy to take to any ice rink or field my older kids were playing at. We would use car rides as therapy by flipping pictures to CJ and encouraging him to form the sounds. My older children helped, too. Slowly we saw improvement.

As a family, we dedicated ourselves to learning sign language and used amazing DVDs to do so. Once CJ was given his “Picture” book, he could hand us little images of his wants and needs. It was then that I finally understood what he had been telling me all along.

CJ had lots to say. He only needed help finding his voice.

My greatest joy was the first time I heard him say, “Mama.”

The next three years were spent in therapy, where CJ and his therapists developed a fond relationship, one that would unexpectedly follow him into elementary school. There, he entered special services for speech therapy. His original therapist took a job at the school and could keep an eye on CJ, one of her star little guys. We were so blessed.

But soon, it was evident that CJ had met and even surpassed the official state benchmarks to receive services any longer. It was then that an image of a chubby 22-month-old sitting at a lone table in his therapy room and swooning over the mini M&Ms, which had become his expected reward during speech, wafted across my mind. I knew how hard he had worked. I had educated myself enough about Apraxia to know that it could continue to affect him as his vocabulary and the demands on his system increased, especially around third and sixth grades. I could not let his hard work go to waste.

Through my advocacy, CJ was allowed to remain in speech therapy for the remainder of kindergarten, first grade, and the beginning of second grade. He is still in the second grade and was recently discharged from the program; however, I asked for a written agreement, stating that CJ will be allowed back into the program, with ease, if his speech skills backslide when entering third grade. Given that his original therapist is at the school, I am confident she, as his advocate, will insure CJ’s continued care.

The most important message I have through CJ’s story is parental advocacy. There is nothing wrong with standing up for your child’s well-being, as long as it is delivered in a positive manner. Parents can be their child’s voice, until he or she finds their own.

Every child deserves a voice.

More about Sheri Larsen



Sheri Larsen is a published freelance and short story writer, and KidLit author. Her current YA novel is with literary agents, and she’s preparing to sub one of her picture books to agents. Her website, Writers’ Ally (http://writersally.blogspot.com), is where she explores writing, children’s literature, and motherhood. She lives in Maine with her husband and four children.

Father Leads Team to Raise Awareness and Over $22,000 in 2011 Denver Apraxia Walk

(Top Photo from left to right: Jill (Gillian) Green, Saoirse Green, Dan Green, and Siobhan Green; Bottom Photo: Siobhan Green)

On November 15, 2011, Team Leader Dan Green of Westminster, Colorado was selected to win an iPad for his efforts of raising $20,861.31 for Team Siobhan, bringing his team total to $22,053.31 in the Denver Walk for Children with Apraxia of Speech. CASANA selected Green as the Team Leader of the Top Fundraising Team out of a total of 44 Walks held all over North America.

However, for Green, his family, and his team, the incentive was more than winning an iPad; it was about raising awareness in his community and while doing so, raising funds to better the future for his four-year-old daughter, Siobhan, and other children with Apraxia.

When Siobhan was around the age of two years, Green and his wife, Jill, noticed she was not speaking, prompting them to take immediate action like any other parent. From researching online, getting involved with a local county program, to hiring a private speech-language pathologist, they were determined to find answers and to get a proper diagnosis for her. It was not until nearly a year later that she was formally diagnosed with Childhood Apraxia of Speech (CAS).

“CASANA raised awareness so that Siobhan could be diagnosed, and early enough so that we could make an aggressive push to get her to articulate,” said Green, a consultant to startups and venture capital firms. “It was very helpful to go through all the research on the CASANA website and understand what we would be dealing with. The Walk in our area was also instrumental in getting us in touch with other parents of children with Apraxia in the area, allowing us to establish a local social network.”

This network included contacts to trained speech therapists and information that made Green a “smarter consumer of speech therapy services” which introduced him and his wife to techniques that would best help Siobhan resolve. After receiving this help, Green wanted to do more for Siobhan and for CASANA, so he decided the 2011 Denver Walk for Apraxia was his opportunity to do so. When he became aware of CASANA’s iPad prize to be awarded to the Team Leader of the Top Fundraising Team, Green decided to make this his goal; he wanted to win the iPad for Siobhan so that he could help her learn language and help reduce her frustration level.

So with a clear target in sight, Green developed a strategy that combined his passion for photography and knowledge of business he obtained from Harvard University. He gathered several photos of Siobhan he had posted on his Facebook and he drafted letters that could be customized later. Next, he compiled a list of contacts from social media websites including his Facebook and LinkedIn profiles, both of which have a combined 835 personal and professional connections. His determination to reach his goal allowed him to see every person in these networks as a Walk contributor and a supporter. He felt the more people he reached was one less person he had to give an explanation to about his daughter having Apraxia.

“Folks raising money on behalf of the kids shouldn’t feel shy about approaching anybody, as long as there’s a personal connection. You’ll be surprised who’s going to donate. Our donors included two bestselling business authors whom I know and have worked with,” said Green, who found a surprising number of people he reached out to also have kids with Apraxia. Furthermore, most were talking about their child having Apraxia for the very first time outside of their immediate families and donated because they were glad an organization was finally there to support kids with Apraxia.

Green managed his fundraising goal continually by changing the amount a few thousand dollars at a time, so that it would only take 10 or 20 donations of average size to reach it. Ultimately, he wanted donors to know they had a real impact in helping him reach his goal.

“None of the past donors object if you’ve been successful enough to raise the bar a bit more,” said Green. “They usually applaud the success. Somewhere in the back of my head I thought we’d raise around $10,000 but I didn’t want to put that into print because it’s too unattainable to the average donor,” said Green. “Then we blew through $10,000 and I started to think about $20,000, but even then I didn’t put it in print.”

Green’s strategy zeroed in on prospective donors who looked for clues about average donation size when asked to “give from the heart.” He explained that providing guidance to prospective donors and how the question was framed really made a difference in a donation size. For example, he would ask for a donation of $10, $25, $50; of $50, $100, or $250; or of $100, $250, or $500, depending on what the prospective donor’s capacity was and what their willingness to give would be. He also utilized additional page features, such as the ticker and thermometer widgets to help guide and nudge the donation levels up.

“We went to people we thought would be $500 to $1,000 donors first; they were the pacesetters,” Green said. “We made sure that group included senior family members and colleagues whose names on our ticker would be a beacon for other donors. Then we stepped down to folks who were earlier in their careers and had less capacity to give.”

He felt that anchoring at higher numbers from respected members of the community, which people could see on his personal donation page, enticed people who would not have given to give and those who would have given anyway, to give more. Finally at the end he asked people of some means to stretch a bit and to help him make his then-goal of $20,000; a goal that at one point he was at risk of missing.

“We thought we were tapped out at around $18,000, then saw some extraordinary generosity by people who love Siobhan and really wanted to help in her name,” said Green. “They’d been holding out because they wanted to be Team Siobhan’s second wind.”

In the middle of all of this, a crucial moment for Green helped him find more motivation to keep going beyond his goal. “Siobhan got flustered while trying to tell me about a doggie she saw,” he said. “She cried, held her tongue, and signed, ‘Daddy, help me talk.’”

Pushing all doubts aside, Green continued to support his daughter by raising a total of $20,868.31 in his enthusiastic campaign. With a couple of additional donations and company matches, his team’s total reached over $22,053.31 for the 2011 Denver Walk for Children with Apraxia of Speech.

“Following up with donors to ask for a company match is usually well-received, as it's often not much work on the donor's part and is a great way for the donor to magnify the impact of his or her donation,” said Green. His widespread reach included a total of 186 individual donors that as a result would help support CASANA and benefit important funding for future programs and research.

To find out more about the Walk for Children with Apraxia of Speech, visit: http://www.apraxiawalk.org/