Thursday, December 13, 2012
Monday, October 8, 2012
To the anonymous donor who gave $60 to Team Anna for our 2012 Walk for Children with Apraxia of Speech:
I want to say "thank you." I know the chances of you reading this post are very small—perhaps infinitesimal—but on the slight chance you see a link to this post, I want to tell you a bit about the girl you're supporting and the many kids like her.
Anna is an amazing girl. I know I'm biased since I'm her dad, but she really is. She is six-and-a-half and she just started first grade: she loves to read, to swim, and to perform for anyone who'll watch, or when she's alone in front of a mirror. She wants to be an actress and I think she'll be a good one: we're looking into classes for next spring.
But to act she has to be understood and that's a challenge for her. At two-and-a-half years old she was diagnosed with Childhood Apraxia of Speech. CAS is a motor-speech disorder where her brain knows what to say but the mouth can't keep up. It's a spectrum disorder: some kids don't talk at all while others talk non-stop but can't be understood. Anna was in the latter category: she still is, but thanks to almost four years of intensive speech therapy, we now understand her most of the time. She's not done yet, but she's come a long way.
Speech therapy has made a huge difference in her life and we are grateful to all the speech language pathologists (SLPs) she has worked with over the last few years. SLPs undergo intensive training in order to work with children with CAS, and CASANA helps fund some of that training. They also fund research, iPad app development, and outreach to over 350,000 people each year through Apraxa-KIDS.com, the Apraxia-KIDS blog, and social media sites like Facebook and Twitter. None of this would be possible without donations like yours.
Every year, kids with Apraxia and their families participate in walks across the country to raise money and awareness. Last year, we walked with a small group of families in Salem, Oregon, and despite registering just before the deadline we still raised $360. This year, with more time to plan, we hoped to do better.
We did. My wife's employer gave us $1000 (meeting our original goal) in early-September. Friends and family contributed too. And Anna decided to do her part. She saved change from household chores in a special Apraxia piggybank, set up a lemonade stand during a church garage sale, and contributed half of the money she made selling her pre-school aged toys in the same sale. She raised $50 all by herself, which we matched to bring her total contribution to $100.
After the sale was over, we submitted her contributions to our fundraising page, leaving us only $60 short of out new goal of $1350. I posted the story of her lemonade stand on both Facebook and Twitter and with less than two weeks to go we hit our goal.
Thanks to you, anonymous donor.
It's been said by many people that the greatest testimony to a person's character is what he or she does when no one is looking. This contribution, however big or small it may seem to you, is a great testament to your character. You didn't give it in hope of recognition. You knew that no one would ever know your identity and yet you gave anyway.
We will never know your name, but we will always be grateful.
David, Julia, and Anna Ozab.
Biography: David Ozab is currently editing and revising his first non-fiction book, A Smile for Anna, which tells the story of his daughter’s cleft diagnosis and surgery, her difficulties with speech, and her incredible outgoing spirit through it all. He is a Contributing Editor at About This Particular Macintosh and a Guest Contributor at MyEugene. His writing has been (or will be) featured such diverse publications as Chicken Soup for the Soul, Errant Parent, and Catholic Digest. He is a stay-at-home dad and blogs about parenting and life at Fatherhood Etc (http://www.fatherhoodetc.com). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.
For more information on David Ozab, visit his website at http://www.davidozab.com/
Tuesday, March 13, 2012
“Will my child be accepted?” It’s a question every parent asks, particularly parents of kids with Apraxia of Speech. I’ve asked that question myself many times. My daughter Anna has always made friends easily, but as other children her age became more verbal, I began to notice a barrier forming between her and them. It’s been two years, but this incident still sticks with me. She had just turned four, and it was the first time she was excluded because of her Apraxia.
We were at our local mall's playland that day—one of Anna’s favorite places to play. She likes the waterfall themed slide, the hollow log topped with a lounging bear, and the big red canoe. I like that there's only one way in or out so it's easy to keep an eye on her.
I sat by the entrance as I always do. I had my notebook at hand to catch any cute or funny things Anna might say. She ran around, slid down the slide, and made friends with all the kids—it was spring break so there were lots of kids to play with. She approached an older girl who was sitting on the bear and asked the same question she always does:
"Do you want to play with me?" The girl didn't understand, so I repeated it.
"She got a bit of an accent," the girl replied.
"Yeah," I said. "She's in speech therapy."
The girl shrugged her shoulders, slid off the bear, and ran over to the slide. Anna followed, of course, like she always does when she wants to be friends.
A few minutes later, I saw Anna talking to the older girl, who sat by the slide with two other girls closer to Anna's age. The girls struggled to understand Anna so I walked over and helped translate:
"She said 'My name is Anna, what's your name?’”
"I'm Whitney," the older girl said.
"Do you want to play with me?" Anna asked again. I repeated what Anna said so the girls would understand.
"This game's for three," Whitney said. "I'm the mommy cat, and they're the kittens."
I wasn't sure if the girls were excluding Anna on purpose, or if they’d created a three-person game, but I quickly thought of a way they could include her.
"Can't there be three kittens?" I asked. "Like the song?" I sang a verse of The Three Little Kittens. Anna and the two younger girls smiled, but Whitney shook her head.
"This is a different game.” She got up and walked away. The two younger girls followed her. Anna started off too, but I called her over.
"Anna, they’ve already started their game."
She pouted. “But I want to play with them.”
"There are lots of kids here. Why don't you find another one to play with?”
I gave her a hug and sent her on her way. Within five minutes, she and another girl were running around the play area, sliding down the slide, and laughing. She was over the snub.
But me? Not so much. It's something I've worried about since she was first diagnosed with Apraxia. She's always made friends so easily, but as she grows older, will she be seen as different and shunned by some of the kids? Her speech is improving rapidly, but she may need years of therapy to be completely understandable and even then she may never lose her "accent."
How will she handle the rejection? How will I? How much do I shield her? How much do I let her experience so she can learn to take it and ultimately ignore it?
Those questions were on my mind the rest of the day, and they’ve nagged at me ever since. Every time she enters a new social situation, I always wonder if she’ll be singled out because of her speech.
Almost two years have passed since that day at the mall. She’s six now, and has just started the second semester of Kindergarten in our neighborhood public school. She still has trouble being understood at times, but she's had no trouble making friends. Her outgoing personality and our constant encouragement have made a big difference. So has her ongoing therapy. Other than her “accent,” her classmates see her as another girl in their class.
If you are a parent of a child about to enter school, and you're worried about how your child will fit in, I hope that I've eased your worries a little bit. Yes it can be difficult, but in my experience it's never as bad as we imagine it will be. Take advantage of all the support that's given to you, and then let your child have fun.
Biography: David Ozab is currently editing and revising his first non-fiction book, A Smile for Anna, which tells the story of his daughter’s cleft diagnosis and surgery, her difficulties with speech, and her incredible outgoing spirit through it all. He is a Contributing Editor at About This Particular Macintosh and a Guest Contributor at MyEugene. His writing has been (or will be) featured such diverse publications as Chicken Soup for the Soul, Errant Parent, and Catholic Digest. He is a stay-at-home dad and blogs about parenting and life at Fatherhood Etc (http://www.fatherhoodetc.com/). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.
David Ozab: Writer http://www.davidozab.com/ Salem, Oregon
Thursday, January 26, 2012
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.
Tuesday, January 3, 2012
(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/