How Danny Keefe Found His Voice - A Most Unusual Story

Danny at Apraxia Walk

By Jennifer Keefe

As a mother of four, my first job is to protect my children to ensure their safety, keep them happy and feel loved. With Danny, my instincts to protect are very different than how I want to protect his siblings.

Danny has childhood apraxia of speech (CAS) and was diagnosed at 3 years old. When asked how he compared to other children with CAS, I was told he was severely unintelligible. They didn't have to tell us that we already knew it as we had a very difficult time understanding him. Although his siblings could understand most of what he said and could help us out.

At home, Danny is treated just like his siblings. No special treatment just another member of the Keefe household. Sometimes I would forget he had trouble speaking and communicating clearly until we left the safety of our house and I would hear children younger than him speaking clearly. It was especially hard watching his younger cousins speak so clearly when he struggled so much. His cousins have always supported him, they say cousins become your first friends, we believe that.

I was afraid to send Danny to school for fear he would get picked on by classmates. It was so hard to let him go off to school when my instincts were telling me to hold on and protect him from potential hurt. I knew I had to send him, he needed it and was ready even if I wasn't.

His years in preschool went well. He made friends. We all felt safe. Then it was time for kindergarten. His first year was OK, some children questioned why he talked the way he did, did he speak Spanish and although they weren't picking on him, the words hurt Danny deeply. I still remember Christmas of 2012 when the biggest gifts he asked for was a world globe. When I asked Danny why he told me so he could show his classmates he was from America like them and not from another part of the world. He wanted them to know that was just like them. My heart broke. I couldn't stop this from happening to him. That year Santa brought him his globe and he was so happy!

Another thing happened that year is that Danny decided he was most comfortable in a suit and hat. He wears a suit seven days a week and walks with confidence, as he should!

This year, Danny repeated kindergarten, not just because of CAS, but it did play a role in our decision. This time, though, he would go four full days and one, half day, which meant he would be at school all day and have to go to recess and lunch. While he was very excited about this, I cringed. I knew for some children that these were times of the day when they should be carefree can sometimes be the worst part of their day.  For Danny that became true.

For the most part, he has more great lunches and recess outings than bad, but when they are bad he cries and I cry. Truly, as a mom, it is the most helpless feeling not to be there to protect your child from bad things happening to them. When he would come home upset we talked about it as a family and our motto was, "it doesn't matter what people think of you it only matters what you think of yourself." It was hard saying it when Danny's heart was breaking, but my husband and I believe this. We would also talk about all of the great people in his life.

One day Danny came home and told me how two little boys took his hat off, threw it and then proceeded to throw mulch in his hair. I was so angry - beyond words - and I wanted to march on that playground and speak to those little boys, but Danny looked at me - not even angry - and told me, 

"It doesn't matter what they do, Mom.  It only matters what I think of myself."  

What I didn't expect, but should have realized, was how these stories were also affecting his siblings. His oldest brother Tim was deeply upset by what was happening to his brother. Tim didn't tell us; he confided in his friends. The friends were so impressed that a six-year-old said that it didn't matter because it only matters what he thought of himself, that one 11-year-old boy started a movement.  The boy didn't know it at the time, he just wanted to support Danny and show Danny that he loved him by also wearing a suit and fedora to school. Then the word started to spread through the entire 5th grade football team that November 20, 2013 was going to be "Danny Keefe Awareness Day." There were 45 boys who came to school to show my son, Danny Keefe, that they love and support him.

My wish has come true.  Danny is protected and it doesn't always have to be just my husband and I, but that our community is also there to help him!

Since November 20th our lives have changed. Locally, schools are sponsoring Danny Awareness Days and everyone dresses in suits and hats. His story is being told in classrooms near and far. This story has been aired locally and nationally. Most recently, Danny sat across from and spoke with Ellen DeGeneris on The Ellen Show and then demonstrated to the world his famous dance moves. 

Even though Danny has Apraxia, Danny's voice is being heard by millions and I'm not afraid for him anymore - (well maybe a little)! He is one of the strongest, most self confident people that I know. We are so proud of him, our family, community and all of those people out there that have taken the time to reach out to us. We feel very blessed and lucky to have this support for our little Danny Keefe.  

As a mom it felt great that the lessons we were teaching actually were paying off, but I felt terrible that he had to endure even an ounce of pain. 

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/

Telling Anna's Story

By David Ozab (Writer and father of a daughter with Apraxia)

I didn't plan on becoming a writer, but I have a story to tell. The story of a little girl who knew what she wanted to say but couldn't make the words come out right. It's a story you probably know and share—why else would you be reading this blog?

It's the story of a girl in search of her voice. Her name is Anna, and she has Childhood Apraxia of Speech.

It took us a while to realize there was something wrong, but about the time she turned two we started to suspect it. I remember one day in particular. My wife Julia and I had taken Anna to our local Gymboree studio for open gym when a little voice caught our ears.

"Help please, mommy."

We turned to see a small boy struggling to climb up the ladder behind Anna. His mom leaned down and gave him a boost.

"Thank you," he said as he climbed the rest of the way up the play structure set in the center of the multi-colored classroom.

"He's a beautiful little boy," Julia said.

"Thank you," his mom replied.

"How old is he?"

"Eighteen months."

The words hit as hard as if the play structure had collapsed on top of us. Eighteen months old and his speech was clear and fluent. Anna was seven months older and we couldn't understand her.

That's when we knew there was something wrong, but we didn't know what it was yet.
Now Anna has always been a smart, creative, and outgoing child. She was already recognizing a handful of sight words and communicating with us as best as she could. We practiced by writing words on her Magna Doodle:

C-A-T

"Meeeow." She couldn't say "cat" yet but we knew what she meant.

D-O-G

"Rffff." A bark.

P-I-G

"Doh, doh, doh." Her approximation of an oink.

She was obviously smart and she knew what she wanted to say. She tried to communicate with us, but we only understood her about ten percent of the time. Mostly she babbled to herself or her toys. Every so often, though, she would ask for something and we'd have no idea what she wanted. I remember one evening in particular when she walked in our living room and announced:

"Awaem oobie ees."

"What's that honey?" Julia asked.

"Awaem oobie ees."

"I have no idea," I said.

She made the sign for eat, putting her hand up to her mouth.

"Awaem oobie ees."

"Eat," Julia said. "Eat what?"

"Oobie."

"Oobie?" I asked.

"No," Anna replied. Her "no" was unmistakable. "No oobie, oobie."

Anna folded her arms in frustration. It was hard not to laugh at the gesture, but at the same time I felt so bad for her.

"It's something she wants to eat." Julia said.

Anna smiled and nodded. "Oobie."

"So it's food, two syllables?"

"Great," I said. "We're playing charades with a two year old."

"You're not helping.

"Sorry."

Anna put her hands on her hips. "Oobie ees." The hands on the hips were even cuter than the folded arms, but we kept our laughs to ourselves.

"Oo - bie ees?" Julia sounded out the words, grasping at each syllable as it passed over her lips.

I joined her. "Oo - bie ees."

Over and over we both said it. "Oo . . . bie . . . ees." Then it hit me.

"Cookie please?"

Anna smiled and nodded again. "Oobie ees." She sounded so happy.

Julia got up and got Anna the cookie while I smiled back at Anna. I was her hero for the moment, but before long I'd be that stupid grown-up who couldn't understand her.

It frustrated Julia and I as much as it frustrated Anna. We knew she was smart, we knew she understood us, yet she just wasn't able to say what she wanted to say.

Now this may sound strange, but we were fortunate that Anna had been born with a cleft lip. We took her to Doernbecher Children's Hospital in Portland for her surgery at four months old and returned annually for visits with the various members of their Cleft Team. Up to this point, we hadn't seen their Speech Language Pathologist, but given our concerns we made an appointment.

The SLP saw Anna twice—in April and then October of 2008. The diagnosis? Childhood Apraxia of Speech. The recommended treatment? Speech therapy, twice a week.

She began therapy right after her third birthday. When she started, she was all but unintelligible, but within the first year she made tremendous strides. By the time she turned four we could understand about 75% of what she said and total strangers got about half. She's progressed even farther since then, and though we still don't understand her all the time she is mostly understandable, even to strangers. She started kindergarten in September and has transitioned into a public school environment with no difficulties.

And now we want to give back, so we are participating in our first Apraxia walk in Salem, Oregon, this Saturday. Marcie Phillips organized the walk in honor of her three-year-old daughter, Addison, who is the same age Anna was when she began her therapy. We hope that our participation will help her and so many other kids facing the same struggle Anna has faced every day for the last few years: The struggle to be understood.

Every child deserves a voice.


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.

Links:
David Ozab: Writer http://www.davidozab.com/ Salem, Oregon
Apraxia Walk: http://www.apraxia-kids.org/salemwalk/davidozab

Walking for Apraxia & Learning that THIS is OUR thing

By Kari Weed (SLP & mom of daughter with apraxia)

We had the walk last Sunday and it went unbelievably well! The day started out a little crazy. We woke up to downpours and threats of thunder and lightning. Bill and I decided we needed to change the park that we were originally planning on having the walk in, to a park with a shelter. We made some phone calls and then it went much better. The weather was okay, we had a huge turnout and as of date we have raised almost $10,000.00! My mom flew up for the walk, both of Bill's parents were there and his brother and sister. We had cousins, aunts and Lucy's Godmother and friends attend and were all decked out in our "I love Lucy" attire. It was wonderful! We felt so supported and I realized that there is a "village" that is cheering, supporting and loving Lucy! There were two experiences that day, that gave me goosebumps.


When I woke up that morning I was very proud of the money we had raised but felt that I wasn't sure if I would do it again next year. I don't like asking people for money, nowaday there are walks for everything and it took a lot of my time. But, then these experiences happened:

Experience #1

There was a 19 year old girl at the walk named Elizabeth. Elizabeth was at the walk with her mom and had joined a local team with out even knowing the kids. Elizabeth is 19, attending UW and has apraxia! She has been in therapy since she was 3, but did not get a diagnosis until she was in 2nd grade. Elizabeth's mom stated that she has been waiting for the northwest to finally recognize apraxia and they were so thankful to be there. I talked to Elizabeth and was intrigued by the way she talked. Her speech was in her throat, kind of like glottal sounds. It was different, but not too different. I found myself listening to her and praying that Lucy will talk that well someday! Her mom was so thankful and Elizabeth was very proud. She knew how hard she had worked and this group of people are the only ones who would understand that!

Experience #2

A dad walked up to me after the walk and asked if I was Kari Weed? I said "yes" and he said, "Thank you for organizing this walk, for the first time ever, I heard other children who speak like my son. Thank you." I had tears in my eyes by the time we were done talking.

Now we will be organizing this walk every year! After the walk was done and we cleaned up, some of our family came back to our house. We toasted with champagne, ate chicken wings and then crashed for a great nap! After nap time we again met with family and had a celebratory dinner. It was a wonderful day!

I have learned that yes there are walks for everything, but this is our thing. These parents and kids need a place to see that other families are dealing with the exact same issues. Our kids were celebrated that day. Our kids who get the dirty looks in restaurants when they scream a lot because they cannot talk; our kids who we all fear will never speak; our kids who we love so much and we would do anything to give them a voice. Yes, we will be planning this walk again next year because this is our thing.

Thank you everyone who supported us!

[Special Note: CASANA thanks the volunteer efforts of Kari Weed and all the Walk for Apraxia volunteers who dedicate their time to bring awareness to their communities, and so much more.  At the Walk for Apraxia you are among "your people", those who understand just what you are going through and share the struggle and the hope.  The Walk for Apraxia also raises important funding for programs and research.]

Mississippi River Apraxia Challenge (MAC Ride) and Tom Welge Solidify Choice of Speech Language Pathology Careers

by Ellen Groh & Lindsay Croegart

In the beginning hours of daylight on Sunday morning, September 20, 2009, a brave and driven group of men hopped on their bicycles to begin a 585-mile bike ride to raise funds and awareness for childhood apraxia of speech. Being the parent of a child with apraxia, Mr. Tom Welge made a commitment to bring support to a cause very close to his heart.

The students and faculty in the Department of Communication Sciences and Disorders at Augustana College in Rock Island, Illinois wanted to welcome Mr. Welge and his crew to our campus for fun, food, and a little time away from their already-muddy bicycles. Mr. Welge’s cause is also one of our own causes and we had a desire to show our support. Students welcomed the Mississippi River Apraxia Challenge (MAC) Riders and presented them with not one—but two—checks. With the help of many students, $600 was raised to donate to CASANA in honor of Mr. Welge and his crew’s expedition. Augustana students were not the only ones to donate; the Benisch’s (whose young son attend the Augustana Center for Speech, Language, and Hearing) also raised $510 for CASANA.

After receiving our donations, Mr. Welge asked if he could speak to us and began to warm each of our hearts by providing thanks and appreciation to professors, advice and support for parents, and a certain validation for each student standing in the crowd. Mr. Welge thanked the 100+ Augustana CSD majors not only for the picnic and donation, but also for choosing a self-less vocation. His gratitude (for our participation in the MAC Ride ‘09 event and our career choice of CSD) was expressed as he thanked the students, mentioning his own family’s positive experience with speech-language pathologists. As he began to well with tears, so did many of us. Mr. Welge generously expressed his excitement of having the Augie students standing there on the picnic lawn as representatives of the upcoming generation of professionals in the field of CSD.

Making decisions that affect the rest of your life is daunting; choosing a major and future profession is no different. When I (Lindsay Croegaert) began my first CSD class at Augustana College, I realized my interest in the field. Despite my passion for CSD, worry began seeping into my mind: What if there is a better profession out there for me? How will I ever know whether I chose the right career path? Although I felt anxiety over choosing CSD as my one and only major, I was still excited to finally start my classes in the department. I jumped at the first service-learning project opportunity—MAC Ride ’09. During Mr. Welge’s emotional speech expressing his thanks and gratitude to the students, my doubts disappeared. I was no longer worried about my intended major—I no longer had any reservations. In addition to completely removing doubt about my choice as a major here at Augustana, Mr. Welge also reminded me that the education I’m currently receiving isn’t just about earning a degree. My preparation and education here at Augustana are stepping stones that will help me help others. The career and the life that I’ve chosen for myself benefits so many more people than just me. I can’t thank Mr. Welge enough for his thoughts and words. He and his team inspired and validated each of us through their motivational message more than they’ll ever know.

I (Ellen Groh) am a senior this year at Augustana. Amid the stress of finishing my undergraduate degree and applying for graduate school, I rarely am able to imagine my life outside the world of education. Yet listening to Mr. Welge speak, I became able to envision the life I will lead when my last three years of school have been completed. Mr. Welge helped remind me how powerful my job will be as a speech-language pathologist. I will care, teach, love, and help individuals every single day in my profession. After meeting the MAC Riders, I again could see the bigger picture. We really will make a difference—students, SLPs, families, professors, and professionals working together as one. The MAC Ride event helped to instill the idea that we are one big team, reaching for an even bigger goal. As CASANA’s motto states, “Every child deserves a voice.” I am touched and truly blessed to be part of a team that makes the voices of children heard.

Ellen Groh and Lindsay Croegart

Augustana College, Rock Island, IL

Communication Sciences and Disorders Classes of 2010 & 2012

With Apraxia There Are No Magic Bullets; But Are Unexpected Benefits

[by Michele S., as part of CASANA's parent scholarship application for the 2009 National Conference on Childhood Apraxia of Speech]

Childhood Apraxia of Speech affects our six-year-old daughter’s life every minute of every day. She is the sweetest little girl who loves and wants to get to know everyone she meets. The way she expresses herself draws some to her and scares others away. Some people are just plain confused. Anna has not been deterred by negative reactions in the past, but has recently become more concerned with how others feel. Even in an academic setting, there are many who assume that the inability to communicate freely or “on demand” automatically means that there is a cognitive issue.

School is a continuous battle for us. There is no ideal placement for a child who needs to be among typically developing peers, but has language delays that are seen in many subject areas. I would often ask myself if money were not an issue would everything be better? Of course, I immediately think! However, putting a child with Childhood Apraxia of Speech in a private school, when her siblings are all in public school seems like overkill. After all, these children are very capable of functioning in society if proper supports are available. Anna needs to be with good language role models and really enjoys their company. It would be detrimental to put her in another type of setting, which is often the case. This has unfortunately caused animosity between the school system and our family.

Speech therapy is another area of concern. We went for years without a (speech) diagnosis and no proper therapy. Some summers, there was no therapy at all. Very little progress was made and this preoccupied the entire family. We finally found someone qualified to evaluate, diagnose and treat our little angel. She has made so much progress since then and we have learned so much! It is still a battle to get the understanding and support of her school speech therapist, but we will not give up!

As a parent of a child with Childhood Apraxia of Speech, I spend a tremendous amount of time learning about the disorder, the therapy and treatments, and more about my child in general. This is absolutely a labor of love! I enjoy the learning, the insights and new perspectives of the professionals and meeting the other parents of children with CAS. We are a small, but passionate group with so much to offer.

There are so many unexpected benefits Childhood Apraxia of Speech has brought to our family. Anna’s big sister is 8 years old, has the patience of a saint and is a natural speech/language pathologist! She frequently role models and participates in activities to encourage Anna which is extremely helpful to us all! It is amazing to see such a young girl in such a mature role. We have incorporated the use of sign language, which has helped strengthen this relationship and helped big sister with her own expressive/receptive language disorder.

Anna has a younger brother with suspected Childhood Apraxia of Speech. The Early Intervention staff does not see the signs that we see. We now know what to look for and have had to advocate very hard for needed services. Childhood Apraxia of Speech is difficult to describe and there are not enough trained professionals to help parents identify it early on. Instead of being fearful or discouraged, we are now very encouraged by all the available information.

Our daily way of communicating with the 3 youngest children has changed into a way of life instead of just weekly therapy. We do not sit on the sidelines and leave it all up to the therapist. We try to always be active partners; it truly has become a lifestyle change. Signing, modeling and increased wait time has not only benefited my children, but also the class I teach and many other children we see on a weekly basis. I am always impressed with the enthusiastic curiosity of the children and adults who are near or with us. Their attitude toward communication seems to be better because of our example.

Of course there are the moments when all the time spent going to therapy, conferences, and work on sound productions do not seem to yield the results we all want. But then something wonderful will happen…Anna will spontaneously count to 10 when playing Hide and Seek! Saying every number (except 7, she always skips 7!) clear as can be! I wish I had the video camera all the time! We have all learned to appreciate the gift of communication more than we ever thought possible.

Financially, Childhood Apraxia of Speech takes its toll because of the time and expense of therapy, the travel, and the emotional investment put into this one child, sometimes at the expense of the others. It can put a tremendous burden on the entire family if not monitored every now and then. The guilt of not doing enough for some and too much for others is something every family must face, but the overwhelming importance of a child being able to effectively and consistently communicate their needs is always at the top of the list in our house.

There is no magic bullet with Childhood Apraxia of Speech and no overnight successes and we know this. However, Childhood Apraxia of Speech has brought us closer together as a family since there is always so much to tell and we celebrate every success!

Welcome to The Apraxia-KIDS Blog

Welcome to our Apraxia-KIDS Blog! I'm hoping that the blog will become a regular stop in your internet travels.

We are currently incredibly busy as the National Conference on Childhood Apraxia of Speech is approaching in just 2 1/2 weeks. One of the tasks that was recently completed was awarding the parent scholarships. We are so grateful to Morrison & Foerster, LLP who made the gracious donation that allowed us to provide partial scholarships to 12 parents. As one requirement of the scholarship application, parents needed to submit an essay about how everyday life is affected for kids with apraxia and their families. There were many fantastic entrys and we will be publishing several of them here. I'll be anxious to see if you can relate to the stories families tell.

One thing that the essays reminded me about was the intensity of each day for families struggling to help their child. Whether it is feeling totally baffled by the "words" and terminology being thrown at them or reaching deep to become master's of time management, parents report that most areas of their life are affected. It really is quite striking and an important reminder of the need families feel for support in their lives.

Thanks for reading and please look for much, much more in the near future!