Apraxia-KIDS - Every Child Deserves a Voice

Early Advocacy Made the Difference

2012-01-26T14:30:00.001-05:00

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

2012-01-03T09:26:00.031-05:00

(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/

YOU'RE A STAR

2011-11-30T08:34:00.010-05:00

This poem was written by 10-year-old Megan Stephens. She wrote this poem for her younger brother, Dawson, who has apraxia.

Through my sight,
I can see your fright,
But it’s alright.
It’s not your fault.
You’ve done nothing wrong.
I know that you are strong.

You may have trouble talking,
But that doesn’t make you any different.
No one is the same,
And there should be no shame.

Some people may be mean,
And it doesn’t make it right,
But on your face,
I can still see the light.

When I hear your voice,
It makes me smile.
I would love to hear you talk to me
For a while.

You may have trouble talking,
But that doesn’t mean a single thing,
Because you are everything
To me.

Now I can see your strength.
I can’t even measure its length.
You know that you are amazing,
And you truly are
My star.

Telling Anna's Story

2011-10-13T11:26:00.020-04:00

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

2011-09-28T09:13:00.000-04:00

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.]

Triathlete Luke Farrell Takes on World and Speech Dyspraxia

2011-09-09T19:46:00.000-04:00

Written by: Roy Elmer, Luke’s Grandfather

Please Note: Terminology used throughout this story, such as Speech Dyspraxia, is the same as Childhood Apraxia of Speech.

Triathlete, Luke Farrell, has had Speech Dyspraxia, SLI 5-6, since birth. Now 18, Luke is in his final year of school at Immanuel Lutheran College at Buderim on the Sunshine Coast. He also just received advice of another selection in the Australian team to compete at the World Junior Championships in Beijing, China in September 2011. He is widely regarded as an outstanding young man and a rising talent in the junior elite level Triathlon in Australia and internationally.

LUKE’S EARLY LIFE—A ROUGH RIDE.
At the age of four years, while living in Brisbane, Australia, Luke had not begun to speak and was diagnosed by a government department psychologist as having autism spectrum disorder. At this departmental officer’s direction, he was transferred from his local kindergarten to a “special” preschool, attended by children with serious disabilities. Luke was surrounded by youngsters with serious developmental and behavioral problems and had some disturbing experiences. These experiences created great angst for his parents regarding the short and long term effects. His parents made several approaches to the Education Department to sanction withdrawal or transfer, but nothing was achieved.

Once Luke reached primary school age, he was sent to a “special education unit” at the Mt. Gravatt East primary school in Brisbane. This brought new challenges for Luke, struggling to separate the teacher’s voice from other sounds in his surrounding environment and unable to comprehend the lessons. In attempt to cover this, he began to imitate other student’s reactions and behaviors, only to mask further the true nature of his problem. As time progressed, his family became aware that the only appropriate intervention he was receiving was one half hour every fortnight of speech therapy. His tuition time was shared with six other students and other lessons/services provided to Luke were of no benefit. His parents saw him being prepared solely for a life of limited expectations as a disabled person.

A GLIMMER OF LIGHT.
Luke’s first signs of an improved prognosis appeared only after he had the good fortune of being referred to Jane Remington-Gurney for speech therapy. Jane runs a company called “Options” Communication and Speech Therapy, operating at the cutting edge of the science of her profession. Upon the first meeting and subsequent consultation processes with Luke, Jane diagnosed Luke's condition as Verbal Dyspraxia, a disability presented as a speech language impairment, SLI 5-6, and a hearing and comprehension difficulty. Following Jane's diagnosis, Luke was referred to Dr. Ross, a specialist in Autism disorder and president of the Autism Association in Australia. At this consultation, Dr. Ross agreed with Jane’s diagnosis in which Autism was eliminated and Verbal Dyspraxia, SLI 5-6, was confirmed.

PATHWAY FORWARD.
Luke's parents were determined to give him, for the rest of his school life, the opportunity to keep in touch with his own peer group by finding and establishing his own level in his future. Their hopes were pinned on the private school sector, combined with continual monitoring and guidance from his speech therapist, Jane. The next step was to find a private school willing and able to accept the challenge of providing Luke a place in one of their classrooms as well as a meaningful education. Finding it proved to be very difficult as their search extended beyond Brisbane. It was not resolved until the principal at Immanuel Lutheran College, Buderim, called a meeting of the staff members who would be involved in delivering Luke’s education program. They accepted the challenge and for the first time Luke enrolled at Grade 3 to a normal classroom. The very next day the family relocated to the Sunshine Coast. This was an enormous dislocation for Luke’s parents who were faced with many challenges, including selling the family home and managing their Brisbane based business from 100 kilometers away.

Although it was understood that given the delayed start to education proper, Luke would have significant hurdles to overcome to graduate from high school. Guidelines were put in place to ensure minimum targets were achieved for Luke to have the ability to interact with other members of mainstream society, to have a positive self-image, and sufficient life skills to make his way in life. Happily, this target has been surpassed with already several bonus outcomes. Luke’s easy going nature attracted friendships essential to peer group acceptance. His shy but honest modesty following his successes with his sporting endeavors reflected credit on his school and firmed up his friendships, all of which are fertile ground for the formation of a healthy self-image and self-esteem.

SPORT—THE KEY TOWARDS NORMAL LIFE.
The role that Luke’s participation in sport has played in his progress towards a normal lifestyle is impossible to ignore. At the age of thirteen, after watching a televised triathlon event, Luke announced he was going to become a triathlete. Although he had never owned a bike or displayed any particular talent for running, he did not regard this as an obstacle. His parent’s only reaction was by providing encouragement, support and opportunity. That year, Luke entered the Mooloolaba Triathlon in the "come and try" series. This proved to be the most enjoyable experience in which he competed successfully. In the next four years, Luke’s progress displayed a rise through district, regional, and Queensland representative levels as he participated in state teams that won the Australian team’s championship, and then the honor of representing Australia in a triathlon. Luke appeared to make a quick and smooth transition from a “nobody” to “a big time somebody.” Nothing could be further from the truth.

In late 2008, Luke, who was only 15-years-old at the time, was producing impressive performances in the Gatorade age group events held in Queensland. As a result, he was contacted by the Triathlon Australia and with only one week’s notice to the first event, he was advised to compete in the South Australian, West Australian and ACT Triathlon State, under 19 age group, Sprint Championships. These races formed part of the selection trials for the Australian team to compete in the World Triathlon Sprint, under 19 age group, Championship. Luke finished first in Gleneg, South Australia; and second in both Rockingham, West Australia and Canberra. ACT. After returning home, Luke competed in the remaining events, winning the “Gatorade” series in his age group in Queensland, across six triathlons at different venues. These performances had been the reason for his gaining selection in the Australian team for his first time.

Following his results in special trials, he received advice from the Queensland Academy of Sport that he was an automatic selection in the Triathlon Queensland Junior Emerging Triathlon Squad (JETS). Shortly after, he also received advice from Triathlon Australia of his selection for their 2XU National Junior Development Camp. He was advised that his selection was based on his “Commitment, Attitude and Performance” and importantly, his “potential to become an elite athlete.” He would receive this invitation again in 2011.

In 2009, 16-year-old Luke was one of the youngest triathletes selected to represent Australia at his first ever World Junior, under 19 age group, Sprint Triathlon Championships on the Gold Coast. He finished in eleventh position in a field of 57, under 19 age group, competitors from around the world. After outstanding performances in 2010 state and national competitions and selection trials, he again achieved selection in the Australian Team for the 2010 World Junior Spring, under 19 age group, Triathlon Championships held in Budapest, Hungary. The domestic season finished in mid-March so Luke had only six months of training with no competition until the race itself in September. Despite these conditions, Luke finished in fourth place.

After resuming from his rest period after Budapest in late 2010, Luke competed and finished seventh place in his first elite Open Men’s triathlon event, the Queensland Triathlon Gatorade No. 1 race. From there he went on to achieve his third consecutive win, blitzing the field by a full two minutes, in the Queensland Triathlon “All Schools” 2010 championships. In 2011, he finished in second place at the Open Men’s event for the Gatorade No. 2 race at Robina on the Gold Coast, followed by a win in the Gatorade Bribie Island Junior, under 17 age group, Triathlon. Both proved to be just a warm-up for the Triathlon Australia, under 19 age group, championship held at Canberra in which he discovered his racing bike had a crack in its frame just before leaving. He still managed to finish second place at the 2011 Australian Championship event on a borrowed bike.

Over the next few months, Luke learned about the impact of illness on training and competition performance. He suffered a series of health challenges, including an ear infection, a virus and ultimately bronchial pneumonia, losing 5kg of body weight. Luke’s training load and competition schedule were reduced and he displayed great courage in persevering, especially with team events. Although the past few months have been a little quieter as a result of his ill-health, the exciting news is Luke’s selection again for the 2011 World Junior, under 19 age group, Triathlon Sprint Championship to be held in Beijing, China.

Luke’s support group is happy with his progress, despite the setback caused by his untimely illness. He is considered to be on track with his goal of life as a professional triathlete. After returning from a necessary rest period ordered by his coach, Luke entered the Hervey Bay “Olympic Distance” Triathlon to record a base time to qualify for future major events; Luke finished in fifth place in this Open Men’s competition. While there, Luke found himself competing against one of his idols, Courtney Atkinson. They talked after the event and instantly became friends. Today, their friendship continues by keeping in touch through Facebook. It is Luke’s sporting achievements that have opened doors to conversations like this, which were never dreamed of in those difficult early years.

TIME TO MAKE A DECISION ON A FUTURE LIFE.
After Luke finishes school in late October 2011, he will begin life as a semi-professional triathlete until he achieves his license as a professional. He will then be nearing the end of his third year of a four-year Operational and Strategic plan, put together by his family support group who were drawn together by Luke’s determination to succeed. He also aims to be a professional coach of these skills later in life, a remarkable ambition for a lad with Verbal Dyspraxia. Luke’s story reveals great strength of character, dedication and determination to succeed. His diagnosed medical condition is incurable, however Luke has used his sporting experience and successes to throw off its shackles and earn the admiration and respect of his peer group, both at school, in sport, and in the broader community. He has not cured himself of his condition, but has learned to “live with it.”

His appointment as captain of the Sunshine Coast Secondary schools regional team in 2011 indicates the respect he has earned from the regional team’s management. The team members and other competitors accept him into the peer group unconditionally and as a teenager living with Verbal Dyspraxia, Luke is immensely proud of his achievement in making his first public speech on accepting the trophy on behalf of his team.

In his short eighteen years to date, Luke Farrell has trodden over more obstacles, overcome more fears and moved further beyond his comfort zone than many people are asked to do in a lifetime. The simple act of mixing with his peers and fellow athletes who enjoy fluent communication skills has tapped his reserves of intestinal fortitude, and his peers’ lives have in turn been enriched as they have come to grips with communicating with Luke. Luke hopes his story, which basically comes down to accepting his situation, learning to cope with it as best he can, looking to his strengths, and getting on with life, will offer hope and support to individuals, parents or families facing similar challenges.

For more information go to Luke’s Website: http://www.lukefarrell.com.au/

E-mail: roy@lukefarrell.com.au

Truth or Misleading? “Children with Apraxia of Speech Make Very Slow Progress”

2011-08-01T11:49:00.007-04:00

The Childhood Apraxia of Speech Association of North America (CASANA), along with members of its Professional Advisory Board, has engaged in discussion about the misleading impression that children with apraxia of speech make very slow progress in speech therapy. Some children are diagnosed with Childhood Apraxia of Speech (CAS) by speech-language pathologists who are using “slow progress” as the differential characteristic of the disorder. Is it true that children with CAS make very slow progress in therapy? Here is what we think:

Children with apraxia of speech often make slower progress than children with other types of speech sound disorders. (Note: slower than other types of disorders; not slow in and of itself)
Children suspected to have CAS but who make very rapid progress in speech therapy that generalizes easily to new contexts, both in and outside of the therapy room, most likely have a phonological disorder and NOT CAS..
With appropriate goals, informed by detailed assessment – AND – appropriate, well executed speech therapy that incorporates principles of motor learning, children with apraxia of speech can be expected to make good, steady progress in therapy, especially those with age appropriate or near age appropriate cognitive and language skills.
Both parents and SLPs should not blindly accept that, “progress will be or is slow because the child has apraxia.”

Discussion:

Speech progress may be very slow, even with appropriate planning and therapy, when other co-existing problems add to the challenges, including delayed cognition and/or receptive language, poor attention or behavior, and other significant speech diagnoses such as dysarthria. Additionally, children with CAS who are in poor health and not able to take full advantage of the learning and practice opportunities available to them, may demonstrate very slow progress in speech production skills.

With appropriate goals and intervention, parents of children with apraxia as the primary diagnosis should expect progress in their child’s use of intelligible words within a three-month period. (Children with apraxia plus other complex challenges likely will have more limited progress.) If this progress does not occur for a child whose primary diagnosis is CAS, an SLP should consider the following questions:

Is the diagnosis correct?
Are the goals and stimuli appropriate?
Are there additional diagnoses that should be considered, in addition to CAS?
If there are other diagnoses, is one of them really the bigger challenge to the child’s speech production skills?
Is the intensity of speech practice, both in therapy and at home, sufficient?
Is the frequency of direct speech intervention sufficient?

Remember that although speech progress can be slower for children with apraxia than it is for children with other speech problems, there should be noticeable and ongoing progress in the child’s ability to independently produce intelligible words. While their words may not be “perfect”, one can observe increased movement toward intelligibility. Parents will want to be in contact with their SLP to discuss expectations and what modifications the SLP will make if progress is not being made.

Interview with Dr. Aravind Namasivayam

2011-07-19T15:50:00.002-04:00

CASANA has awarded an Apraxia Treatment Research Grant to Dr. Aravind Namasivayam of the Speech and Stuttering Institute in Toronto, Ontario, Canada for his proposal, “Exploring the Relationship Between Treatment Intensity and Treatment Outcomes for Children with Apraxia of Speech.” Other co-investigators on this grant include Ben Maasen, Ph.D. of the University of Groningen, Netherlands; Pascal van Lieshout, Ph.D. of the University of Toronto; and Margit Pukonen, M.H.Sc. of the Speech and Stuttering Institute. We interviewed Dr. Namasivayam about the grant project and that interview is below.

CASANA: Why do you feel this study is important?

Dr. Namasivayam: There are a number of factors that may contribute to treatment outcomes in children with Apraxia of Speech (CAS) ranging from frequency, intensity and type of practice sessions to amount of home practice, parental involvement/participation parental skill and treatment fidelity, yet there is little empirical data regarding how these factors actually contribute to treatment effectiveness. The present large scale multi-centre study is the first of its kind to investigate:
a) the magnitude of treatment effects,
(b) the relationship between treatment intensity and outcome measures and
(c) to identify the key factors that contribute to treatment effectiveness of motor speech treatment for this population.

For example, at the present time we do not know if the intensity of treatment (1x versus 2x a week) plays a role in determining the magnitude of treatment effects when controlled for treatment duration (10 weeks), or what are the effects of parental training and home practice on speech intelligibility and functional communication. Having this information will help us refine and guide clinical practice (e.g. service delivery models for this population).

CASANA: In what ways do you anticipate the study being most successful?

Dr. Namasivayam: We feel that the study will contribute significantly to the understanding of how the service delivery models (e.g. treatment intensity) affect treatment outcomes in CAS. This information could then be used to justify treatment schedule changes and funding allocation for treatment of this population. Also, findings of the study will yield important information relating to the impact of parental training and home practice on treatment success. This information can be discussed with parents to motivate and increase their participation in the therapy process. Finally, information on magnitude of treatment effects for outcome measures related to speech intelligibility and functional communication is limited for this population. Knowing magnitude of treatment effects is important for two reasons: (a) it can be used to set appropriate levels of clinician and parental expectations prior to treatment, and (b) it allows for planning of future studies in terms of study design and sample size.

CASANA: What are the biggest challenges you will face with this study?

Dr. Namasivayam: The biggest challenge as with any large scale multi-centre study is to limit inter-clinician and inter-clinic variability and make treatment replicable. We have taken a number of steps to ensure both quality and quantity of treatment is delivered as intended. For example, all clinicians prior to participating in the study were given a structured 30 page manual, had to attend 2 rigorous multi-day workshops on assessment and treatment of children with motor speech disorders, had to complete 2 online video based assignments, and pilot the treatment protocol as a case study in their own clinics. These procedures were developed to allow us to maintain a high degree of treatment fidelity across clinicians and clinics. Additional challenges include getting ethics approvals from a large number of centers and hospitals within a short period of time, and finding sufficient assistance and financial resources to meet project timelines.

CASANA: When this study is successfully completed, what future research do you expect?

Dr. Namasivayam: We hope to continue several lines of research based on the factors that may contribute to treatment outcomes in children. For example, we would like to investigate how a clinician’s skill level and training may affect treatment outcomes or how a clinician’s accuracy, timing, and type of cueing in treatment alters treatment outcomes for CAS. These are critical follow-up questions to this project.

CASANA: What are your thoughts on CASANA's Apraxia Treatment Grant Program?

Dr. Namasivayam: Through it's research program, CASANA is fostering exciting research that will help us develop a deeper understanding of CAS and how to treat the disorder more effectively. Our research team would like to extend our sincere thanks to CASANA for providing us with the opportunity to contribute to this cause.

It is expected that about 200 children with motor speech issues will be participating in this study, with a significant portion of them displaying signs and symptoms of CAS as defined in the 2007 ASHA technical report. Without the financial help of CASANA we would not be able to identify, analyze, and report on data relating to treatment effects in this subpopulation of CAS within the larger motor speech research study.

We hope that the study will provide concrete information on the impact of service delivery models (e.g. treatment intensity), parental training and home practice and magnitude of treatment success. Based on the findings of our study, we would be better able to justify changes to service delivery models and funding allocation for treatment, and to motivate and increase parental participation in the therapy process, allowing clinicians to develop appropriate levels of parental expectations and finally, to permit future researchers to plan appropriate study designs and estimate sample sizes. In this manner we feel that the proposed study directly relates to the mission statement of CASANA: “To strengthen the support systems in the lives of children with apraxia, so that each child has their best opportunity to develop speech”.

Is the iPad Worth It?

2011-07-01T08:24:00.001-04:00

By Kim Singleton, M.S., CCC-SLP

Are you considering an iPad for your family with an eye on the benefits for your child with apraxia? Do you have an iPad and are not sure how to maximize its positive effects? How can you justify spending the bucks on such a cool toy for your family or school? The iPad provides an accessible, portable, dynamic and exciting playground for children with apraxia. In fact, this technology has benefits that other technologies and therapy activities lack. The iPad’s small size and weight (1.3 lbs.,) touch screen, fast load time, numerous applications and high quality audio recording capabilities merge to have a potentially huge impact on communication success.

As we know, children with apraxia have some common characteristics. For example, they benefit from opportunities to practice target sound sequences frequently. Our children do best when their experiences alternate between high and low communication demands. Accurate and supportive feedback speeds up speech learning. Children with apraxia benefit from feeling our cues as well as hearing and seeing cues to encourage understandable speech. Thoughtful use of the iPad can address these distinctive needs and be part of a solution to help our children reach their potential.

Does your child hate to practice speech sequences over and over? Often, this repetitive practice is hard work, with no intrinsic communicative value and children resist. With a motivating ‘app’ and quickly alternating turns, the iPad can encourage your child to practice, practice, and practice without distress.

With the iPad you can easily switch between activities with little time or preparation. This feature allows the users to rotate between activities with ease. It is easy to switch from verbal to nonverbal activities, alternating the communication demands. By using proficient skills, practicing emerging skills and learning new skills alternatively, our child with apraxia is anchored in success while risking more difficult sound sequences.

The iPad can provide feedback and cues to our child. Some apps cheer, clap or even groan! With the iPad’s built-in microphone and speakers, children can hear and compare their own sound productions with that of a stable auditory model. And it sounds fabulous! With the vast number of applications available, the iPad can provide visual cues that are motivating and high quality. With some practice [and a sturdy hand], the adult can incorporate tactile and kinesthetic cues while sharing an iPad activity.

Still not sure about the iPad? Then consider the iPod Touch. It is less than half the price and very light weight [.2 lbs]. Its size can make sharing an experience a bit more difficult but certainly worth considering. One last note, I have no investment, financial or otherwise, in Apple or any of its subsidiaries!

[View Kim using an iPad in therapy for a child with apraxia of speech]

[Kim Singleton, M.S., CCC-SLP has extensive experience serving children and adults with complicated communication challenges. She specializes in providing treatment to individuals with autism spectrum disorders, childhood apraxia of speech, and clients using augmentative and alternative communication systems. She serves individuals through her private practices in the Philadelphia and upstate South Carolina areas. For more information on Kim, please visit her website at http://www.kimsingleton.com]

What the Research Says: The Importance of Production Frequency in Therapy for Children with Apraxia of Speech

2011-05-31T11:33:00.006-04:00

The American Journal of Speech-Language Pathology recently published an article titled, “The Importance of Production Frequency in Therapy for Children with Apraxia of Speech (CAS).” The research was conducted by Denice Edeal and Christina Gildersleeve-Neumann from Portland State University. Their research question was to determine whether or not more practice of speech targets would lead to better performance by children with CAS within a speech therapy session and if more practice would lead to better “generalization” (increased performance on words that were not involved in the child’s training).

Because the hallmark feature of CAS is faulty speech motor planning and programming, it is theorized that using variables or principles from the professional literature on other types of motor learning may be advantageous in the treatment for CAS. Clinical practice as well as a growing body of research seems to bear out those ideas. Speech-language pathologists (SLPs) who are successful in treatment for children with apraxia often state that these children, in particular, need more INTENSIVE speech therapy. In this instance, intensive refers to the degree of practice the child receives within the individual speech therapy session. In citing leading researchers on motor learning, the author’s write, “Schmidt and Lee propose amount of practice is a key variable in motor learning. They suggest that the more practice opportunities an individual has, the better the individual’s performance of a motor task will be, which in turn lead to greater learning of these motor tasks.” Overall, more productions of speech targets by the child equals a greater degree of intensity.

In addition to considering the question of intensity of speech practice opportunities, the researchers decided to use an “integral stimulation” therapy method that is consistent with the Schmidt and Lee theories and the principles of motor learning. Dynamic Temporal and Tactile Cueing (DTTC) is a modification of the integral stimulation method used in the treatment of adult apraxia of speech. DTTC has been adapted for use with children, specifically children with a diagnosis of apraxia of speech. Multisensory cueing (visual, verbal, tactile, auditory, etc.) and other strategies such as a slowed rate of production are used within a hierarchical framework in order to target syllables, words or phrases, depending on the child’s current level of functioning. An SLP can move up or down the hierarchy depending on the child’s “real time” level of performance. In Edeal & Gildersleeve-Neuman’s research, they created an experiment in which two children with apraxia each received two conditions of practice in each session. One condition was called “moderate frequency” in which, through the DTTC therapy approach, 30 to 40 speech productions were elicited from the child. The other condition, using the same DTTC method of therapy, was called “high frequency” in which 100 to 150 speech targets were elicited during that segment. In the course of a session, each child received 15 minutes of moderate frequency and 15 minutes of high frequency practice. Different types of speech targets were used in each condition so that the effect of each condition could be evaluated.

Results

Regarding the overall therapy approach, the researchers found that an integral stimulation approach to speech therapy (DTTC), which incorporates principles of motor learning, benefitted both children. One child’s consonant accuracy rose nearly 50 percent in 11 weeks. The other child’s intelligibility rose 11 percent in five weeks.

Regarding the moderate versus high frequency condition of practice, the researchers found that both children benefitted more from the high frequency practice than they did the moderate frequency practice. The speech targets treated in the high frequency condition led to increased in-session accuracy as well as greater generalization to untrained targets. In addition to the improved in-session accuracy and generalization with higher frequency practice, the authors point out that this same practice demonstrated the accuracy could be achieved in fewer sessions. Furthermore, targets that received treatment in the high frequency condition were more stable and accurate from session to session compared to speech targets trained with the moderate frequency condition.

The Bottom Line

The results reported in the Edeal and Gildersleeve-Neumann study are very encouraging yet have limitations. First of all, the number of reported subjects was very small. Secondly, subjects had some variability in the length of their treatment. Issues such as the motivation of the child may also enter into the mix. However, on the positive end, this report confirms other studies in which multi-sensory therapies such as DTTC, which incorporate the principles of motor learning, are effective methods to treat a difficult disorder like CAS. Keep in mind to aim for the following in speech therapy sessions:

A high degree of direct practice of speech targets. A child should have dozens and dozens of speech productions during each therapy session. A child that is saying or attempting little in a speech therapy session will not likely make progress like a child who is able to have a high degree of practice opportunities.
Therapy approaches that incorporate principles of motor learning may be key to progress for children with a primary diagnosis of apraxia of speech.
It is worth mentioning that children with apraxia of speech should work on actual speech during speech therapy. This is consistent with motor learning theory which suggests that to improve performance for a particular task, one should practice that specific task.

Source: Edeal, DM and Gildersleeve-Neumann, CE. The Importance of Production Frequency in Speech Therapy for Childhood Apraxia of Speech. American Journal of Speech-Language Pathology. May 2011, Vol. 20, 95 – 110.

© 2011 by the Childhood Apraxia of Speech Association of North America (CASANA). All Rights Reserved.

In Your Silence

2011-01-04T08:58:00.002-05:00

In Your Silence

In your silence I hear your fear,
Your need to have me always near,
The fear you won't be understood.
Speak my child - if only you could.

Some people don't know, they say "She'll be alright!"
They don't see the pain, the anguish and fright.
You understand all that they say and infer,
Yet you cannot respond - a pain you incur.

My love for you is simply not enough,
To get you through life, at times will be tough.
But I will help you grow with all in me,
You shall find your voice, this I guarantee.

Your voice will be strong, your words so proud.
You will one day stand tall and speak out loud.
You won't fear anymore, not being understood.
It is then that we'll know we did all that we could.

So for now in your silence I hear your fear,
Your need to have me always near.
The fear you won't be understood,
One day will be gone - it will be gone for good.

(posted with permission of author Sarah Grainer)

What Causes Childhood Apraxia of Speech and Is It Preventable?

2010-05-07T07:56:00.007-04:00

From CASANA

First, it is important for parents to understand that there is most likely nothing that you did to “cause” your child’s speech disability. It is not about how much you talked to your child or whether or not you had them in daycare, for example. Your child does not have apraxia because you separated from your spouse or because you moved to a new city. So while we know that parents have a strong role in healthy child development, unless there was abuse, neglect, or isolation, you are not responsible for causing your child’s speech disorder.

The current knowledge that we have about Childhood Apraxia of Speech (CAS) is this. CAS occurs in the following 3 conditions:

Neurological impairment caused by infection, illness, or injury, before or after birth or a random abnormality or glitch in fetal development. This category includes children with positive findings on MRI’s of the brain.
Complex Neurodevelopmental Disorders – We know that CAS can occur as a secondary characteristic of other conditions such as genetic, metabolic, and/or mitochondrial disorders. In this category would be Childhood Apraxia of Speech that occurs with Autism, Fragile X, Galactosemia, some forms of Epilepsy, and Chromosome translocations involving duplications and deletions.
Idiopathic Speech Disorder (a disorder of “unknown” origin) – with this condition, we currently don’t know “why” the child may have CAS. Children do not have observable neurological abnormalities or easily observed neurodevelopmental conditions.

Parents often ask if their child may have apraxia due to medical complications during pregnancy or childbirth. There are currently no studies that suggest a direct relationship between complications of pregnancy or childbirth and a specific increase in risk for apraxia of speech. For example, an umbilical cord wrapped around the neck of a fetus could theoretically cut off oxygen supply and possibly lead to neurological injury, eventually resulting in a CAS diagnosis. However, such a condition could also NOT result in CAS or even neurological injury. Some children are born just fine even though there was some complication during pregnancy or birth. So, while it is possible that a complication could result in neurological damage that might contribute toward a motor speech disorder like CAS, research has not told us when or how this would occur.

Some speculate that some forms of CAS and other childhood conditions may be a result, in part, of environmental conditions such as exposure to pollutants and toxins before or after birth. Others speculate that nutritional deficits or malabsorbtions cause CAS. We do know that, generally, toxins and nutritional deficits do cause some developmental problems, but to date these theories, as they relate specifically to CAS, are only speculations.

That said, a child’s positive health would contribute to their ability to benefit from their learning exposures and from therapy designed to help them. A child who is healthy is more fully capable of taking advantage of opportunities to learn. Children who are sick frequently with ear and sinus infections, enlarged tonsils and adenoids, asthma, allergies or have sleep disturbances, poor diets, attention and behavioral difficulties are going to find it much more difficult to benefit from the help provided. Helping your child be healthy and thus more “present” to the learning opportunities around them is one way parents can help.

Most likely in the future we will learn that CAS is caused by multiple factors and conditions, not one. To the extent that research evidence becomes available that CAS is caused by some factor(s) that can be manipulated to reduce or eliminate it, will determine whether or not it is preventable. Until then, we do know that appropriate speech therapy provided frequently and in consideration of motor-speech treatment principles offers the single most important opportunity for children with CAS to improve their speech capacity. Children who are able to maintain optimum health will most likely directly benefit the most from appropriate help.

Response to Op.Ed. on Environmental Toxins & Neurodevelopmental Disorders

2010-02-25T16:58:00.004-05:00

[Note: This blog article is in response to the February 24, 2010 New York Times Op. Ed by Nicholas Kristof titled, "Do Toxins Cause Autism?"]

By Tesi Kohlenburg

Kristof is on the mark here in so many ways. Philip Landrigan was the keynote speaker at my organization's Fall conference here, and his talk was both fascinating and frightening.

As a pediatrician, as a child psychiatrist, and as a mother, there are a handful of things that I believe we all should do NOW:

1. Stop heating food in plastics. ( And don't put away warm left-overs in plastic containers, either. And don't drink things that have been left sitting in plastic bottles in warm locations like cars. And don't drink soft drinks and juices from plastic bottles -- evidence is beginning to come in that the acids in soda pull chemicals out of the plastic bottles that are themselves promotors of obesity, independent of the calories in the soda. Most of all, don't put baby formula in plastic bottles containing Bisphenol A or other plasticizers.)

See this link for more about obesogens http://www.newsweek.com/id/215179

2. Learn which are the most pesticide-contaminated kinds of fruits and veggies, and either don't buy them, or buy them organic.

( Berries, which are so good for us in many ways, are sadly among the worst offenders in terms of pesticide contamination.)

3. Read labels, and reduce or eliminate our exposure to food dyes and preservatives. This means making our family's meals from uncontaminated whole foods, fresh fruits and veggies, meat that hasn't been given hormones, etc... not eating from boxes, bags, and cans full of additives, stabilizers, texturizers etc.

4. Be very careful about disposing of chemicals. Whatever we put in the water goes into our world. See this CBS News report on the contamination of our drinking water with prescription medications: http://www.youtube.com/watch?v=RE7OK9sMDvo

For more resources, visit:
The Environmental Working Group at: http://www.ewg.org/home

OR

The Mount Sinai Children's Environmental Health Center (Dr. Landrigan's center) at:
http://tinyurl.com/c5xnx2 ).

This emerging knowledge can protect all of us and our children from the consequences of exposure to air, water, food and household materials full of newly-invented chemicals, many of which have not been tested, and a good number of which are now being shown to have undesirable effects on our bodies and brains. These chemicals can have powerful effects on fetal development and in early childhood, when all of the cells are differentiating and learning where they belong and how they're supposed to function.

With great concern and also hope that we can change,

Tesi Kohlenburg

[Tesi Kohlenburg is a physician and the parents of a child with apraxia of speech, dyspraxia]

Quiet

2010-02-21T09:07:00.004-05:00

Quiet

By Pia Prenevost

Sometimes he is so quiet.

Frequently he is so quiet.

Word attempts are sporadic.

I can never predict when

he might make a sound or word.

He doesn't jabber or babble.

Not to himself, and not to us.

At least, not often.

He is quiet.

Some days I think he wants to communicate.

To talk.

Other days I think he is happy being quiet.

Wordless.

Apraxia………..

2010-02-18T07:10:00.001-05:00

by Michelle Genser-Jones

The expressions in your face
Show the words you can not say
Not a fault, of yours nor I,
But of Apraxia,

Unknown to most….
It is not heard, nor seen,
But a Voice it takes

Scared parents…cry…worry
While surrounded by others…
Who just can’t understand

The fate, the destiny of their loved child
Seem unfounded through the endless wait…
With ears constantly ready for that first word
Joyful tears pour out when it’s finally heard

Words…movements… Sounds, may be found
Only to be lost once more,
And re-found at a later date
Dreams only to remain are those shared

Between child and parent
A bond always remains

Is Your Nonverbal Child Safe on the School Bus?

2010-02-17T12:10:00.005-05:00

by Sharon Gretz, M.Ed.

Two weeks ago we learned of a very disturbing story via the internet about a four year old girl with childhood apraxia of speech who was left unattended and forgotten on her school bus for over three hours. Little blond Ava was unable to yell out for help. Despite school district bus safety policies and procedures, the bus driver allegedly failed to do the seat by seat check that would have located Ava in the rear of the bus. An investigation ensued and shortly thereafter the bus driver resigned.

Ava’s family would like the Apraxia-KIDS community to understand how important it is to ask questions about your school’s bus safety procedures and to ask for a written copy. No one thinks that this can happen to their child, however, on the CASANA facebook page a number of parents are reporting similar stories about their child being placed in unsafe situations. For example, one boy was driven past his bus stop but could not tell the bus driver and was taken back to the school before he was noticed. Another child was crying on his bus but since the school bus driver did not understand his communication, no one knew why or what had happened. And tragically, a similar story occurred a decade ago to another little boy who was left on the bus in the bus garage for hours. On a brighter note, parents on our Facebook page also discussed safety procedures that are in place for their child who is nonverbal or limited verbal.

So the bottom line is this: What can parents to do best protect their child with limited intelligible speech?

Make sure that your school district has bus safety procedures in writing and assure that you get a copy of the policy.
Inquire about whether your child’s bus driver has had special needs training. Arrange a meeting between school administration and your child’s bus driver to discuss your son or daughter’s communication needs.
Include travel safety and transportation details as part of your child’s I.E.P. Transportation is considered a “related service” and so specific transportation details can and should be included when the IEP team has agreed to include transportation for your child. The Individual Transportation Plan would be a tremendous addition to the IEPs of children who are unintelligible or nonverbal.
Communication goals at school and at home should include self protection and self identification goals. Children with communication challenges need a way or need practice with skills such as calling for help (“Help Me”); how to gain someone’s attention (“Hey you!” “Wait!”). These phrases can be incorporated into speech targets or augmentative communication.

Having a child left alone for hours on a bus is easily every parent’s nightmare but is particularly disturbing if the parent is already concerned about a child’s ability to speak out. Careful planning and team work are essential to assure the protection of all, but most of all for the child. If you are a parent, do not let your concerns and worries be pushed aside. If you are an educator, be an advocate to make sure that children with no or little speech are kept safe!

Every Child Deserves A Voice

2010-01-28T11:11:00.005-05:00

by Megan Steinke (originally on Hippymom.com; posted with permission of the author)

Childhood Apraxia of Speech is a motor speech disorder, a neurological disorder where the child cannot plan and coordinate speech movements. Ever have that feeling of a word on the tip of your tongue, but you can’t quite say it? Or slip over a word you knew and could say in your head? Imagine every word you ever tried to say coming out like that – even though you know what they should sound like, the sounds never quite make it from your brain to your mouth the way you want to say them.

CAS isn’t a very well-understood disorder. It’s also not a very common one, which is why resources on it for parents are pretty scarce. If your child is autistic or ADHD, dyslexic, any of the “common” special needs, you will find a wealth of information. If your child is apraxic, you might think he’s ceased to exist in the literary sphere. There are papers written by speech therapy professionals for speech therapy professionals, but to a layman they’re difficult to understand. Even books devoted to speech disorders don’t really cover it. If it weren’t for the Apraxia Kids Network website, I would have feared I was the only one. The website has been a lifesaver, both in terms of scholarly articles as resources, and as relief from the feeling of isolation that this diagnosis can bring.

Getting a diagnosis of CAS is very scary, but my children had been in speech therapy for two and a half years by the time we got it, and though I was terrified for their future, it was at least preferable to not knowing why they weren’t talking. We had been to countless speech therapists, and finally got in to see the pediatric developmental neurologist, who immediately diagnosed both boys as nearly identical cases of apraxia. He thought they were quite textbook and was surprised no one had diagnosed them before. He was fascinated by how alike their apraxia is. Since the causes of CAS are unknown, a set of identical twins with identical apraxia seems to make speech pathologists’ research senses tingle.

It’s a long and arduous process of speech therapies to bring language out of children with apraxia, and it’s emotionally exhausting for the parents. Support groups are invaluable. It’s a relatively rare disorder, however, so the only support you get may be online. There is a local CAS network in my area – in a group of seven cities with a population in the millions, home to the largest naval base in the world, there are nine children diagnosed with CAS. Two of them are mine. It is very isolating to deal with that kind of number.

I am continually having to explain apraxia to people, because it is so unusual and so unknown – even to their teachers. I spend a lot of time fighting for them, to get them the help they need. The cost of speech therapy for two children in the amount needed for CAS would bankrupt us if we went through a private firm, or worse, through the local children’s hospital. When we saw that the cost would be nearly $600 a week per child (and would go up if insurance decided to stop covering it), we knew we had to find other means to get what we needed. The local university has been invaluable to us, as they have a speech therapy program and need clinical patients for their students. My boys have received excellent therapy there, from some truly wonderful young women who put their whole hearts into my children’s care.

“Will my child ever speak normally?”

I stopped filling in my boys’ baby books as they got older and older and that “first word” slot was staring me in the face. One year old. Two years. Three. I wanted to write something down, anything. But their only noise was a monotone “mmmmm”. I wanted that word. I wanted it very badly. My children were three years old before they called me “Ma” for the first time, and for a very long time that was their only word, and I hugged it close to my heart every time they said it. On their fourth birthday, they had three words: Ma, Da, and buh (brother). They were four and a half when they told me – in words, not sign language – that they loved me.

When they were younger, we would watch the Signing Time DVDs, because the handful of signs that they had learned in speech therapy were their only means of communicating. I would listen to the song at the end – “Show Me A Sign” – and cry because the lyrics that Rachel de Azavedo wrote so touched me. They were exactly what I wanted to know from my children, exactly how I felt. I didn’t feel like I knew them sometimes. I just wanted to know that they were in there. They seemed so distant sometimes, though they were always affectionate, and no one ever saw signs of autism in them, something I feared. I always felt uncertain that I knew anything about who they were.

Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Tell me that you’re happy and you love it when we’re laughing
Tell me more, show me a sign.

I know I’m not alone in that feeling. An SLP presenting at the 2004 Apraxia-KIDS conference wrote a poem of sorts to describe it that is broadly similar, particularly emotionally, to the song. And I know the CAS children feel it too.

While visiting a friend recently who has girl twins a year younger than my boys, they played with the girls’ dolls. Dominic put a baby doll in a stroller, wheeled it up to his brother, and said, “I be the mama, you be the doctor, and this is my baby.” Chris agreed, so Dom in his high-pitched ‘mama’ voice said, “Doctor, something wrong with my baby, he don’t talk. Why don’t my baby talk?” It was absolutely heartbreaking, and I still cry to recount it.

It’s been very hard on us over the past four years since we first began to realize that – as Dominic so succinctly put it – something was wrong with my babies, but we are finally starting to see improvement in huge leaps and bounds. They’ve come from a handful of single-word utterances to long and complex sentences with a vocabulary nearly on par for their age level in only a year, though they still have a lot of articulation errors and strangers find them difficult or impossible to understand. I’m at about 60% understanding what they say. It’s a wonderful thing to hear my children talking to each other, or to have one run past and say “I love you so much, Mama!” I had worried I would never hear it. I hope someday I’ll hear it without distortion.

Beautiful Girl

2009-11-01T15:33:00.009-05:00

By Isobel Allen

You’re light has always shined so bright

Even when you lost your words

And we started this fight

You’re light shined bright

Happiness is infectious coming

From such a special child

I struggle to be more like you

Not letting the worry build

They will not misunderstand,

Or get it all wrong

Oh but sometimes they do

Does it hurt me more than you?

I see the words in your eyes

What you want to say with all your might

To join with the other kids

And still your light shines bright

How hard you have worked, what a feat

For such a young life

We will keep on going

Educating all we meet

Someday you will tell us

All your dreams and desires

This I have no doubt

The Joy you give we could not live without

I’ll always be by your side

My heart weighs heavy still as

You’re light shines bright

Our beautiful girl

Small Seeds Watered with Tears

2009-10-20T18:59:00.009-04:00

[Written and delivered at the 2009 Pittsburgh Walk for Children with Apraxia of Speech]

by Sue Freiburger

When I look at Sean, it is hard to believe how far we have come in the past six years. He has grown in so many ways and achieved so much more than we had ever hoped for.

I want to share our story with the parents here with young children with apraxia. Sean’s apraxia was so severe that after a year of speech therapy thru early intervention, the only sound we had was “eh”. We discovered CASANA when Sean was around two and a half years old and began really aggressively pursuing intensive specialized therapy. We came to Pittsburgh to have Dave Hammer evaluate Sean and confirm the diagnosis of apraxia. My expectation was that we would leave with a treatment plan and a new direction. I was very hopeful that this would be our turning point.

After a two day evaluation, Dave sat down with us to review his results. The results were not good. Dave said that he was unable to stimulate any speech production from Sean and that at best, he could confirm a suspected severe case of childhood apraxia of speech, with a suspected underlying genetic condition. His prognosis of Sean every becoming a verbal communicator was poor. I held back my tears as I felt my world collapse beneath me. If an expert like Dave didn’t think that Sean was likely to ever be able to talk, where would we go from here?

As we got into out car, the tears started to flow. I knew that I had to pull myself together before we got back to the hotel room where my mom waited with our other two children. Eric had spotted a garden center across from the speech therapy center and thought that could be a diversion for both me and my mother. He suggested I pick out a special plant for her to thank her for coming to Pittsburgh and helping us out during Sean’s evaluation. I was drawn to a small lily plant that was very fragrant. I could explain my red eyes away by saying the flowers had aggravated my allergies...

My mother took the plant home to NY and planted it in a special spot in her front garden. We took Sean back to VA and began our search for a speech therapist who could offer us the intensive specialized therapy that Sean needed. We also began to investigate augmentive communication devices.

It was a long year, with many visits to specialists, long battles with the school system, and about nine hours of private therapies a week, but the following summer, Sean was successfully communicating using his Dynavox Augmentive Communicative Device. That June got a call from my mother telling me that the “Mr. Hammer” lily was in full bloom and it was spectacular.

Due my husband’s job transfer, we ended up moving to Pittsburgh that summer. Unfortunately, there was a long waiting list to get into speech therapy with Dave Hammer, but we kept plugging away. Sean slowly began to find his voice, starting with "Polamalu" when he was around four and half years old and is now quite the talker (and still a huge Steelers fan!)! After almost a year, Sean was able to start therapy with Dave Hammer and Dave couldn’t believe that this was the same little boy he had evaluated almost two years ago. We worked together as a team with Mr. Hammer and Sean continued to thrive. The “Mr. Hammer” lily is around eight feet tall and continues to remind us how far we have come from the day when we felt that all hope was gone.

Over the years, I have spent many hours in my garden, using it as my therapy to work out my frustrations with the long slow process of helping Sean to find his voice. Many of my plants have been watered with tears, but each year, they come back stronger and bigger than ever. Dave Hammer sometimes wonders if he should have given us such a grim prognosis at the evaluation, but we both know that it was a fair evaluation. Without his honest assessment, we never would have know just how hard we would have to work to help Sean find his voice. We would have accepted the school systems assessment that a three year old couldn’t use a high-tech augmentative communication device. We would have waited and waited for the words to come. The path we had to take was a difficult one, the work was hard, but Dave has given us a gift that we can never repay. Sean now has a voice and I have an enormous garden! We dug up a piece of that “Mr. Hammer” lily and split it – a piece of it to grow in my garden and a piece for Mr. Hammer to plant in his yard.

I collected seeds from the flowers in my garden to share with the other parents today. Scatter these in your garden to remind you that from small seeds, beautiful and wonderful things can grow. Let your tears flow on the days when things are tough, but hold on to hope.

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

2009-09-30T19:28:00.004-04:00

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

Photos of Mississippi River Apraxia Challenge Bike Riders with Communication Sciences and Disorders Students at Augustana College, Rock Island, IL

2009-09-30T19:22:00.007-04:00

Emilee's Journey - Never Give Up Hope

2009-08-10T20:15:00.006-04:00

[A letter from Emilee's parents and one that brought tears to our eyes!]

Through the years we have enjoyed reading the success stories of fellow CASANA families. At the risk of bragging (Why not? We’re proud parents. That’s our job!), we would like to share our own story about our daughter, Emilee…

In 1998 at age 3, Emilee was first diagnosed with Apraxia. In the fall of 2005 at age 11, we watched with great anxiety as Emilee descended into the jungle of the middle school. Her learning differences, the academics, social issues, and even being able to open her locker, were all things that kept us up at night wondering how she was ever going to survive the fall of 6th grade, let alone the whole middle school experience.

Well, through more hard work than we could have ever imagined, along with the help of some truly wonderful teachers, aids, her family, and a great (small) group of friends, not only did she survive, she THRIVED. At her 8th grade “graduation” last month, we learned that Emilee was one of only 15 students in a class of 168 to earn the President's Award for Educational Excellence for maintaining at least an “A-“ average in every subject for the entire 3 years of middle school. In addition, she was one of 4 girls nominated by her peers and teachers an award, which is given each year to the outstanding boy and girl in the 8th grade. While she was certainly not one of the more “popular” students, her peers and teachers really admired her incredible work ethic and kindness to others. Needless to say, we could not be more proud of her.

For ninth grade, Emilee will be headed to a small private school just outside of Boston. While they do not offer “services” per se, they specialize in a “multiple intelligences” approach to teaching with small class sizes and a learning center to help guide the students along. It looks like it is going to be a great fit and Emilee is very excited.

Our message to those just starting down the path with a child with CAS would be to never give up hope. While this difficult journey to “Holland” (http://www.our-kids.org/Archives/Holland.html) is far from over, there are wonderful stops to enjoy along the way. You just have to watch for them, because you never know when or where they will pop up. Emilee never ceases to amaze us: from speaking when it was unclear how well she would ever speak, to riding a bike when it looked like a lost cause, to thriving in middle school, when we were worried if she would ever survive it. We are looking forward to seeing what the next four years of the journey will bring.

Confusion with English Spelling of Vowels

2009-08-03T08:48:00.005-04:00

Question: My son has apraxia and memory issues. Is there a way of learning the differences between spelling for a sound like or, ore, oar, au, oar, and aw? My son gets so confused and frustrated. The other day he spelt 'caught' as 'cawght.'

No single approach works for all children, especially for spelling. There are programs that address teacher training for high quality instruction and programs for student intervention from research-based models of
achievement. Teachers must understand individual learners and differentiate instruction to target their identified needs. Quality programs to teach beginning reading should also teach beginning writing with related spelling patterns (like those described in the question), and build upon the foundational belief about the connection to early literacy development. In other words, achievement in reading, writing, and spelling is dependent upon high quality explicit instruction not only in reading and writing but also with attention to the underlying early literacy components of listening and speaking, including possible deficits during that stage of development. Students who have experienced delay in or difficulty with sound play and oral language often require additional intervention with explicit instruction to learn the language arts in their written form.

LETRS (Language Essentials for Teachers of Reading and Spelling) is based upon the textbook and related workbook, Speech to Print by Louisa Cook Moats from Sopris West Educational Services. This professional
development program for teachers of reading, writing, speaking and listening is designed to teach teachers the elements of delivering successful instruction of English "language arts." English is a "deep language" that spells both for meaning and phonics, so spelling can be a challenge for students. Moats describes, "The teacher who understands language and how children are using it can give clear, accurate, and organized information about sounds, words, and sentences. The teacher who knows language will understand why students say and write the puzzling things that they do and will be able to judge what a particular student knows and needs to know about the printed word. Literacy is an achievement that rests on all levels of linguistic processing, from the elemental sounds to the most overarching structures of text."

SpellRead Phonological Auditory Training, acquired by Kaplan in 2006, and generally used with students in grades 2-12 who are still having difficulty with text is "an innovative method for helping struggling students master the critical skills of reading," (which includes spelling). Instruction is delivered by a trained teacher to small groups during a one-hour pull-out across a set progression of lessons to an end point. The largest emphasis for instruction in the program used with grade 3-5 students is on the word level for reading. Smaller instructional sections are dedicated to comprehending text and writing. This "writing" piece focuses more on student writing production (including spelling) than on content. A June 2006 press release describes the program like this:
"The SpellRead program helps students to recognize and manipulate sounds in the English language, then to transfer those skills to reading text and eventually to writing. It is generally administered in schools in grades two through high school during a daily one-hour pull-out program led by a specially trained teacher."

According to a review from the Florida Center for Reading Research,
"The SpellRead P.A.T. program, when implemented properly, can produce significant and substantial effects on reading skill for children ranging in age from grade one through grade six. Results from several clinical samples support the finding that the SpellRead program can provide instruction that is sufficiently powerful to normalize most of the reading skills of struggling readers older than 12 years of age." (FCRR report on SpellRead P.A.T., November 2003)

"The all new Fountas and Pinnell Leveled Literacy Intervention (by Irene Fountas and Gay Su Pinnell) has been developed in response to the demands of teachers and administrators for a powerful, scientifically-based early intervention program that can prevent literacy difficulties before they turn into long-term challenges." ([http://www.fountasandpinnellleveledliteracyintervention.com/aboutLLI.asp] http://www.fountasandpinnellleveledliteracyintervention.com/aboutLLI.asp)
It is a systematic supplementary program designed for small group instruction of young children from Pre-K to Grade 3 that includes close monitoring to work toward benchmark acceleration across prescribed beginning to end points. Learning goals are achieved through high quality teaching with a solid foundation in alphabet knowledge, phonemic awareness, phonics, conventions of print, high frequency words, syntax, fluency, and comprehension, especially for children who are achieving below grade-level competency. Logically found within such a program design, is a spelling-related goal described as follows from the LLI kindergarten level synopsis: "Using letters and sounds to solve words. As children learn letter-sound relationships, they begin to apply them to solve simple words. LLI provides a great deal of systematic instruction to help children understand how words are constructed using letters and letter patterns. They read and write words that are in continuous text."

In the end, the Report of the National Reading Panel, p 2-99, may describe it best:
"Learning to read is a complex task for beginners. They must coordinate many cognitive processes to read accurately and fluently. Readers must be able to apply their alphabetic knowledge to decode unfamiliar words and to remember how to read words they have read before. When reading connected text, they must construct sentence meanings and retain them in memory as they move on to new sentences. At the same time, they must monitor their word recognition to make sure that the words activated in their minds fit with the meaning of the context. In addition, they must link new information to what they have already read, as well as to their background knowledge, and use this to anticipate forthcoming information. When one stops to take stock of all the processes that readers perform when they read and comprehend text, one is reminded how amazing the act of reading is and how much there is for beginners to learn." — Including WRITING and SPELLING!!

Submitted by Kenda L. Hammer, M.Ed.,

Early Literacy Specialist
Fox Chapel Area School District Family Literacy Center
July 24, 2009–Spelling Interventions Response for CASANA

Are Odd Wrist Movements, Hand-Flapping, Eye Fixation on Hands Part of Speech Apraxia And What Does It Mean?

2009-07-14T10:28:00.002-04:00

Response from Sharon Gretz, M.Ed., Founder & Executive Director of CASANA:
"No, I would not consider these behaviors to be "part of" childhood apraxia of speech. They would be more common as behaviors in children diagnosed on the autism spectrum or with significant cognitive disabilites or sensory disabilities. However, there are children without autism or severe cognitive delay who exhibit what are called motor stereotypies or complex motor stereotypies. In a nutshell, the motor stereotypies usually involve hand or wrist movements that are easily stopped when the child is cued or distracted to a new task. I am not a medical doctor so you would need to investigate this with a professional such as a developmental pediatrician. Here is a good article on the complex motor stereotypies:
http://findarticles.com/p/articles/mi_hb4345/is_10_34/ai_n29321368/ "

Will "Autistic" Like Symptoms Go Away Once A Child's Speech Improves?

2009-07-14T09:58:00.004-04:00

Response from Dr. Kathy Jakielski:
"Autism and Childhood Apraxia of Speech are different disorders, although some children may have both. For this question it would be so dependent on which "autistic-like symptoms" are present. For example, if a child clearly wants/enjoys interpersonal interaction but is reticent to interact because of a lack of success getting others to understand due to a speech motor disorder like CAS, that is one thing. In that instance, it is likely that they will interact more successfully and willingly as intelligibility improves. However, if a child actually does have autism or significant "autistic-like symptoms" and apraxia, then EACH part of the child's diagnosis truly needs worked on it and of itself. There is no guarantee that symptoms of autism will be eliminated solely with improved speech intelligibility. It is likely therapy will also involve more than speech therapy and work on things such as social relatedness, language, sensory defensiveness, possibly behavior, etc."

Question on PROMPT Therapy and When To End It

2009-07-13T06:11:00.003-04:00

Ask the Expert - Dr. Kathy Jakielski

2009-07-09T15:08:00.003-04:00

We are at the National Apraxia Conference and spent some time asking one of our speakers, Dr. Kathy Jakielski several questions from parents on the Apraxia-KIDS website.

Question: In a Child that presents with both oral and verbal apraxia, what is more important to treat first, the oral or the verbal apraxia?

"If the oral apraxia is such that it is affecting a child's feeding or nutrition, then certainly that should be addressed right away! I would treat the feeding issues in a feeding context. If closing lips to drink is an issue due to oral apraxia, then practicing drinking with a cup (the actual task) would, in my mind, be appropriate. The child should practice doing whatever "oral" skill is needed vs. unrelated oral movements. The same is true of speech apraxia. Speech apraxia should also be treated by working on actual speech. One does not get "treated" before the other. If there is no "functional" problem that the child experiences from the oral apraxia, then working intensively just on speech would be the direction that I would take. I would always be working on the speech, not "waiting. It is not a question of which one would be first then next."

Getting "Control" of My Child's Speech Apraxia Through Educating Myself

2009-07-06T06:48:00.003-04:00

[By Natalee Landers, an essay as part of CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

I am the mother of three wonderful children. My step- daughter, Ashley is 13 years old and my son, Zachary is five. We also have a three year old daughter named Madison who was diagnosed with Apraxia last year. Her three years have been full of smiles but also many struggles. Within the last 18 months, our beautiful daughter Madison has started to exhibit signs of a neurological problem, to a recent diagnosis of Apraxia. Our family is determined to do everything we can to help her. Unfortunately or fortunately, our views of family and our child have also significantly changed.

We had dreams of Madison breezing through her childhood, finishing high school, graduating college and walking down that aisle. Yes, these are the grand dreams all parents have, certainly without thinking about the day-to-day problems that may enter that “pretty” picture. Needless to say, when Madison did not start to babble like her siblings, I thought, “Um...well, she did have a traumatic birth and has been coddled more than her brother since I have gotten to stay home with her.." so I put the thoughts off. Then when she started to have trouble walking and not saying mama when her peers did, I realized that something was not “right.” I realized we needed to see a doctor, and this started the endless worrying, crying at all times of the day and hoping beyond hope that I was that over-protective mother that her pediatrician called me.

We started seeing various doctors and continued to hold out hope that they would find “something” that would tell us what was wrong with Maddie. Over the last 18 months she has had three MRIs, various cat scans, an x-ray/swallow test, early intervention testing (with no results the first time around), a 30% hearing loss (not bulging ear drums as another doctor reported) and six seizures. Finally, the doctors have said, “There is a problem neurologically (delayed myelin) and we do not know what has caused it but with good services she should be just fine. We do not want to label her just yet, she is too young.” Needless to say the turmoil of not knowing and the waiting has been the toughest on our family. Some days are harder than others. I try to stay positive but often times it is too much to process without getting overwhelmed.

After riding the roller coaster of emotions and searching aimlessly for answers I ran across a website that dealt with Dysarthia and Apraxia. Reading the text, I knew I had uncovered what our baby girl might have. The doctors agree it could be Apraxia, but they don’t want to “label’ her too early. We have been told that she does have a speech disorder instead of a delay as we were told originally. The doctors said that Maddie should be getting intensive speech therapy. My husband and I walked out of that appointment happy and relieved that we finally had something concrete on which to grasp but at a loss for what should we do next. So we put our son, Zachary a bundle of energy, into a three hour a day enrichment child development program so I can devote my time and energy to therapy for Madison. I struggle with the fact that the majority of my day is spent “in therapy” with Madison. Am I taking too much time away from other children? My son is only five and still needs me and if Madison where healthy than Zachary would still be at home with me?” In the same vein, I think he is healthy and developing normally, so he will be just fine....right?

Currently, we see Madison as a child with so much spunk and personality. She is bright and curious about the world around her. She loves everyone and her two big dogs. What tears at my heart on a daily basis is she is trying sooooo hard to communicate. She still grunts and points things that she sees or wants. I no longer keep track of the words or phrases she has used or is currently saying. She is so exuberant when she sees our neighbors that she falls to the ground laughing or runs from them, instead of saying a simple “hi.” She loves to play with her peers if only she could say, “Hi, play with me.” Instead she pushes, shoves or pulls them. Seeing her trying to form words and not being able to do it destroys me and her dad, but we keep going. Zachary has even started to talk for Maddie. I notice when she is trying hard to say something in the car and I can’t see her face or look in the direction of what she is pointing at Zachary will inform me of what she is pointing at or talking about. Her frustration level in just this past month has reached an all time height. She has started to pull her hair out. That was horrendous and frustrating. I just want to make it all better. I have gotten her to clap her hands instead and tell me “mad, mad, mad” although for her it sounds more like “maaa, maaa.”

We do not want to worry about her future and what it could be like. Will she ever talk? Will she be able to interact “normally’ with her peers? Will she have a fulfilling job and future? Are we the right parents for her? Will our other kids be happy with the life we have chosen for our family due to Madison’s medical condition or will they resent us, or worse - her? Being that we are so new to the world of language disorders, I am trying to learn all that I can so I can not only help Madison but educate my family on how our lives will be forever changed by childhood apraxia.

Last June, we were fortunate enough to move back to the United States. Madison has had two more seizures since but is making progress. She currently gets speech therapy, physical therapy, occupational therapy, cranio-sacral therapy, and hippo therapy. It may seem that is a lot of therapy but at this time we are just searching for answers to what will make her language progress. We were fortunate to see a specialist in November 2008 only to be told that Madison didn’t qualify for her program. Not only did she not qualify, but the specialist said that she may be mentally retarded. That stung. We were also told that her oral-motor skills were lacking. I said, "Oral-motor skills what are those and how do we fix that?" So we saw another specialist and for the last six months we have been doing oral motor therapy at home. She is making great progress but for us, it just isn’t enough.

I am concerned with the school system’s lack of knowledge on Apraxia. Even when I gave the team information regarding Apraxia it was meet with a lax attitude. I know that I could become a better "educator", but I am still learning about this disorder.

We are still fighting the battle of how much speech therapy is enough. It took me almost six months to convince our insurance company that she needed intense speech therapy. I had the two facilities pick out and times ready to go; only to be told by the insurance company they would only pay for one facility. So we had work our way in that system. Madison has been getting about 4 days a week of speech therapy and wouldn’t you know it the hospital is NOW instituting policy that they will only see children 1x a week...2x max. I have talked them into waiting until the end of the summer to determine if that is the best plan for Madison. What is so frustrating about all of this is that they see her progress and know that she has apraxia but continue to tell me that the research isn’t there to support intensive therapy. I know they are wrong I see the difference it has made but I don’t have the facts to fight them ... YET!

The future is still scary and unknown. I would have to say that is part of the problem. It feels like Apraxia is a "Word of the Month" disorder and nobody can tell me what her future looks like. It feels as if Apraxia is what autism was like 10 years ago. I feel so helpless at times and realize that the only way to feel “in control” is through education. On my good days I realize that my background in education was meant for a purpose. Even though I received my degree back in 1995 I think it prepared me for what will lay ahead. It at least gave me the “little” bit of knowledge of how the school system works. However, with knowing what I know, I also know when to say, “HELP” I do not know what I am dealing with.

To give my daughter the future she deserves and to help my family navigate this unfamiliar and overwhelming territory, I need to continue educate myself first. Attending CASANA's National Childhood Apraxia of Speech conference would provide this opportunity—an opportunity that would be life-changing for Madison and my entire family.

Diagnosis Brings Relief, And Yet So Many Questions About The Future

2009-07-03T07:05:00.001-04:00

[by Karen Buescher, an essay for CASANA's Parent Scholarship Application for the 2009 National Conference on Childhood Apraxia of Speech]

Zack is 3 years old and was just recently diagnosed with mild oral apraxia and moderate CAS. Zack was born healthy with no complications at birth. All developmental milestones were met at the appropriate age except for speech and language. Zack was always a quiet baby and would easily entertain himself with play. At 15 months of age, he said his first word, "duck". However, he only said that for a few months and still to this day cannot say "duck". I did not realize that he was not developing speech like he should. See, not only am I Zack's mom, but I am also a speech therapist. One thing that I have learned from Zack having speech delay is that it is sure hard to separate being a mom and being a speech therapist. Don't get me wrong, knowledge is good; however, that knowledge can lead you to over diagnose your child so many times.

As I stated earlier, I am a speech therapist; a speech therapist who has limited knowledge about CAS. Many people take for granted that since I am a speech therapist, I should have known what to do to make my own son talk better. In response, I try to compare speech therapists to a doctor that specializes in one certain area. For example, if you are having chest pains, your family doctor may refer to a cardiologist. In the same token, if your child has apraxia of speech, you look for a speech therapist who has knowledge about apraxia of speech. Zack's dad, my husband has less knowledge than me. I try my best to explain speech terms to him but he has the look of deer in the headlights. The fact that we have little knowledge is going to change since we will be advocating for and assisting Zack to receive the services that he needs to improve his speech.

Zack is affected by CAS by not having his speech understood and he gives up easily. I am sure that Zack would love to speak to anyone and have his message understood without having to repeat himself numerous times. Zack becomes frustrated with talking and many times will stop trying to convey his thought or message. Fortunately for Zack, I can usually understand what he is trying to say. However, I cannot always be with him so I have to give Zack credit because he has learned other ways to communicate. He will use gestures or take you to what he is talking about. Also recently I have noticed that Zack is saying, "I can't do that." Of course he says it as "I ant U dat." This response is given frequently when we are practicing sounds or words. It absolutely breaks my heart to hear my little boy give up so easily. The one positive that I keep holding onto is that Zack has a great personality that makes him so fun to be around. I am hopeful that his personality will help others overlook his speech problems.

Zack has not only figured out how to get his message across, but also has figured out that if he plays alone, he will not have to talk to others. Many times when around other children, Zack will go and play by himself. Again, it breaks my heart to see my little boy playing by himself when other children are around. Hopefully, with time, his speech will improve and so will his desire to play with others.

As for the affect for us, his parents, we are relieved to have a diagnosis. Yes, it was hard at first to accept the diagnosis of CAS. one of the many hopes and dreams that all parents have for their children is to experience healthy, normal development. Then when we realized that our child was not developing speech sounds and talking like he should, we thought finding a diagnosis would explain why. Well, the diagnosis did help explain why; however, now we have many more questions and concerns. Many of these questions are about his future since he will be starting preschool in the fall. Will the other kids understand him? Will he be made fun of because he does not talk like the other children? Will he lose his happy go lucky personality that makes him so much fun to be around? So many unanswered questions that only time will answer.

As human beings, we take so many things for granted. The one thing that we will never take for granted is being able to have a conversation with Zack. We look forward to the day when we can sit down as a family and talk about our day. Currently, we can ask Zack about his day by asking him simple yes/no questions so that he does not get frustrated with his response. We will completely cherish the day when Zack can tell us what he did hopefully without having to repeat himself in order to be understood.

How Has Apraxia Affected Us?...How HASN'T It?!!

2009-07-02T20:33:00.001-04:00

[By Lisa - essay for CASANA's Parent Scholarship application for 2009 National Conference on Childhood Apraxia of Speech]

There are 3 in our family: John (dad), Lisa (mom) and Patrick. Patrick is a wonderfully bright and comical 9 year old. He's cute, a bit chunky, and tries to be the class clown. Oh...he's also severely and globally apraxic.

How does Childhood Apraxia of Speech affect our lives? How doesn't it? Patrick's apraxia has reshaped our lives forever. We know no other life than "apraxia" and how it has consumed the three of us.

We have met people and have gone places that we never knew existed. We have heard stories of children and their illnesses that we never knew about, nor thought imaginable. Each and every waiting room that we've sat in held some new type of horror story that we were glad we didn't have. Every hospital overnight test brought about another tragic story of "the child in the room down the hall." That night we prayed for "the child in the room down the hall." We were hoping the light of dawn would greet that other child and that we wouldn't hear family members sobbing.

We have slowed our life and lifestyle from an east coast minute to a creeping, methodical mid-western crawl. We have stopped and smelled the flowers at every step along the way and even had to take pictures of them so we would remember what they were called later. We refer to our son as our "$100,000 kid" - this being the amount of money his therapies (and doctors) would cost us by the time he's hit the age that he is currently. I guess, like our nation's deficit, we'll have to revise that number upward now.

We often wonder if we've missed out on so many things that we should have seen our son do already or if we're still stuck in the midst of his "toddlerhood." He says he has a best friend in school ... poor Braden just wants to be a normal kid and run, jump, and play. Patrick just wants Braden to help him run, jump, and play. We've watched other kids grow and develop. We've also watched the look in our son's eyes. We sometimes see a shiny bright light in his eyes, but, at times, we also see a sad, non-responsive look when he just knows he cannot do it like everyone else can.

We've lost so many things. Patrick dreams of grandparents because we no longer see his. Most of them have passed away, but those remaining have disowned us. We'll never be able to explain to him that it's because he's not "perfect" to them. Our adopted Apraxia-KIDS Listserv is now our extended family. They are "our people." Our people that have worn our moccasins; some traveling even farther in them than we have.

We are so lucky. We only have apraxia. We only have sensory issues. Our son is alive and is gaining strength in his arms, legs, speech, and social skills. We aren't the other parents that we spoke to in all of those waiting rooms. We aren't the other parents that have horror illnesses or children with shortened life expectancies. We haven't had to deal with what they have endured.

The best part of our son's apraxia is learning how strong our own personal fortitude can be. We watch. We coach. We sing praises at every chance we can - to him and for him. The tears that we shed are sometimes overshadowed by smiles of joy when he's able to answer a stranger's question. We're proud that he's really trying to wipe his own butt because he really wants a puppy. We know he really just wants a friend and that puppy would be his friend. A friend that would play with him and understand every word.

Where would we be today if our son was "perfect"? We cannot even imagine. We really, truly cannot even imagine. How hasn't Patrick's apraxia affected and changed his life and our lives? After all, what would we have possibly done with that $100,000 anyway?!

For Julia... Whatever It Takes

2009-07-01T06:15:00.009-04:00

[by Tom K., essay as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

My wife and I are the proud parents of a six year old daughter named Julia and she has been diagnosed with Speech Apraxia. Julia came into our world as a beautiful baby girl just a few days before the 4th of July in 2002. As Julia grew and became a toddler it became very evident that she was not talking and when she did try to utter words they were very difficult for us to understand. At this point we had plenty of input from parents, grandparents and friends. They all had advice as to why Julia was not talking: Julia was fine, she would talk when she was good and ready. Some advice even went as far to tell us that their children didn’t talk for the first time until they were three or four years of age. In order for Julia to communicate with us during these early stages she would point, jump and make utterances.

I vividly recall a trip to Disney World we took in 2005; at this point Julia was three years of age. We had a great time at Disney World’s Magic Kingdom and when it came time for the “Electric Light Parade” Julia wanted a Mickey Mouse balloon, because we could not understand Julia’s request or realize what she was pointing at in a crowd of people, needless to say the day at Disney ended in tears from Julia. For the very first time we witnessed what a difficult time Julia had communicating even with us.

While we watched and hoped for Julia’s speech to progress I was transferred to as part of a job relocation. This was a major change in our lives. Both my wife and I had never lived away from our hometown but we made the decision to move our family of five. Little did we know that this decision would put us on the path to Julia’s diagnose of Speech Apraxia.

As we settled into our new home, Julia’s speech continued to struggle. My wife Tracie knew that Julia’s speech was not progressing as it should and she took matters into her own hands. My wife contacted the office in our county that dealt with special needs children. After six months of in home visits and a special program at the Area Education Agency (AEA), Julia learned sign language and she was able to communicate a little better. Because the AEA is a state run organization they were unable to give us a diagnosis. This was not good enough for us and so a battery of tests began. Trips to the neurologist, MRI, sleep test, tonsils removed and still the doctors could not tell us what was wrong. We then took Julia to a nearby city for another round of tests in which she was diagnosed with Speech Apraxia.

My wife, who has championed to help Julia continue to strive even though she had Speech Apraxia, would not settle. She knew that other then speech, Julia was developing as all other children her age. Through the AEA, Julia was able to attend preschool through the public school system and received specialized instruction for speech therapy. Julia’s Speech Pathologist Mary Beth was truly an angel in Julia’s life. Mary Beth took great interest in Julia’s disability and worked tirelessly to try and find other resources that we could take advantage of while school was out of session or even after school hours. We could see the dedication that was shown by Mary Beth and the path was now set for Julia to get the help she desperately needed. Mary Beth helped us get a scholarship through the hospital so Julia could obtain extra services in the summer.

When Julia entered Kindergarten we decided to send her to Catholic school. Her new speech therapist was not as enthusiastic about Julia or her condition, and we once again hit a brick wall. The difference this time was that Julia was beginning to know the difference as well. She was having difficulty communicating with her classmates and at time was made fun of. I can truly say that this was one of the hardest times in mine and my wife’s life. Although Mary Beth was no longer working with Julia, my wife called and Mary Beth referred us to a specialized program at a nearby college. Mary Beth was not sure they would have openings but it was worth a shot. The college offered a program through their Communication Sciences and Disorders Department. It was here that we were put in contact with a professor who was an apraxia expert, after my wife’s first phone call she put down the phone and cried. Someone understood and could explain what was going on; we felt hope! This program and the individuals associated with it have been the most significant and inspirational aspects of Julia’s treatment for Speech Apraxia.

Julia attends classes at the college three days a week for twenty minute sessions with a student at the college who is studying to work in the field of Speech Pathology. The program is closely monitored by the professional staff and we and everyone who knows Julia have witnessed a transformation. Julia’s ability to communicate has improved dramatically in the past year and a half. We know now that God has played a role in this journey. If I had not taken the job transfer we would have never found Mary Beth and we would have never found out about this wonderful program at the college. It is expensive to send Julia and I have taken on a second job in order to help defer the costs associated with the program, but no amount of money can be placed on what we have received and the progress our daughter has made. In fact we now joke that Julia is never quiet.

Recently we were asked if we would like to participate in an apraxia research study. We were more than honored to have been asked to participate in this study so that families like ours might some day gain a better understanding of this disability. When ever we are asked to participate we say “YES”! We will do what ever it takes to help others by getting the word out. The college professor and the student's in the program have given us and our little girl the ability to communicate and for that we are grateful. We know we have a long journey ahead of us with Julia but we are also very much appreciative of the progress made to date.

The Roller Coaster Ride That Is Childhood Apraxia of Speech

2009-06-30T08:30:00.004-04:00

[by Jill, as part of CASANA'S Parent Scholarship application for the 2009 National Conference on Childhood Apraxia of Speech Conference]

Before my son was born, I was an enthusiastic middle school teacher in a tough part of Chicago. I was dedicated to struggling readers, writers, and mathematicians. But I drew the line at "special education." That wasn't my territory, not because I didn't care, but because I didn't know how to really participate. Back then, special education and general education were two very separate worlds.

Then I had my son and slowly over time, my world view changed both professionally and most dramatically, personally. Evan was perfect and beautiful and filled my heart with indescribable joy. I never dreamt that he would encounter challenges beyond the normal life experiences. I was a first-time mom, living in a rural area, with no extended family to "hang out" with. As I took my little baby in for his well-child visits, I would look at the poster on the wall of the exam room. It outlined language development for the typical child, with all the important milestones. I noticed that Evan was not doing most of the things he was supposed to be doing. During his nine-month checkup, I expressed my concerns to his pediatrician. He said, "Let's wait and see. Boys tend to lag behind girls in development." Everyone else echoed that same feeling, some people even mentioned how Einstein didn't talk until he was four. Looking back, his minimal vocalizations, lack of tongue movement, etc. were so obviously different than the norm. I regret that no one ever seemed alarmed, not that I feel that intervention at this point would have made any difference.

At each doctor visit thereafter, I expressed my concern about his language development and how it was not at all comparable with what was listed on the chart. Finally, at 18 months, the pediatrician recommended that I contact the local Birth - 3 program for an evaluation. The results of the evaluation were quite a shock. I thought he had delays in language development, but in fact, their results indicated that he was delayed in 4 out of 5 categories! Hearing these results was the beginning of a long roller coaster ride of emotions and advocacy that continues today as my son progresses through elementary school.

Progress in speech development has been painstakingly slow. This slow progress has me on a mission to find out how I can help my son. At first I thought he was just slow in learning to talk. A gap began to grow between his expressive and receptive language. Eventually, he was diagnosed with Childhood Apraxia of Speech. As we progressed through therapy and Early Childhood programs, I learned that I had to be the "case manager" for my child. This affects my life in many ways: I invest a lot of time in searching for appropriate services, making phone calls, driving to therapy appointments, meeting with school personnel, and educating myself and others on this mysterious condition known as apraxia.

Professionally I have, of course, become more interested in special education. I'm trying to figure out this inclusion thing - how to make it work for everyone (not an easy task). I also got involved in an interdisciplinary leadership training program that focuses on children with developmental disabilities and their families. This has, among other things, allowed me to attend national advocacy conferences.

Personally, I have become a parent advocate. I am proactive in educating the community about apraxia. I spent man hours in my son's classroom, helping his classmates understand why it is that my son has difficulty talking. At first they would say to me, "Evan can't talk." I would respond, "No, Evan can talk, it's just harder for him." I was glad I was able to be there to discourage that perception of him. I never wanted Evan to hear someone say that he can't talk.

As a teacher, I am now a big believer in the potential of inclusive education. While in kindergarten, my son's language grew more than ever before. Being around same-age peers that not only model language, but also engage Evan in academics and social activities is invaluable. Our school is somewhat unique in that it is very multicultural. When talking about diversity, most people talk about race, culture, language, and religion. We often neglect to include the abundant diversity in ability. I know that Evan's classmates have benefited from his presence as I've been fortunate to spend a lot of time with his classmates and their parents. Educators need to take on the responsibility of providing children with the opportunity to accept and celebrate the many differences in our society. We adults need to nurture and value the compassion that exists in young children. Wouldn't our world be an amazing place if we valued compassion as much as we do competition?

How does Childhood Apraxia of Speech affect my son? I'm not really sure. At this point, he can not express to me what is in his heart. I don't really, really know how he sees himself and I can't infer what his self-concept is. I don't know his own unique perspective on the world. He does know that he is "different" and that few people understand what he says. Right now, his social nature is an asset as he is persistent in forming friendships with other children. He's also a relatively happy child and doesn't get explosive in his frustration. He finds many ways to communicate, using gestures and words. I do think that his challenges with apraxia have allowed him to develop an incredibly empathetic spirit. When he sees a child cry, he puts his arm around that child. In silent gestures, he communicates that he cares and understands.

How does Childhood Apraxia of Speech affect me? Personally, I'm still riding an emotional roller coaster. I thought by now I would be more "together", that I wouldn't get sad at unexpected times. As I write this essay, I get tearful reflecting on the fact that I don't know anything about the inner life of my child. I get angry that he has such a huge challenge that affects just about every aspect of his life. I get frustrated that I can't ever do enough to help him or that I can't make it "go away." I get stressed over the behavioral challenges that arise. But I also get energized when Evan makes gains in the words he says. I celebrate even the littlest things that other parents take for granted. But mostly, when I tuck my son into bed every night, my heart fills with a feeling of love that I never knew before he came into my world.

He'll Talk When He's "Ready"... Not Exactly

2009-06-29T10:42:00.005-04:00

[By Angela Brown; submitted as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

The words “I do” can mean something different to so many people. In many it may spark the image of a bride and groom. For people who have children with Childhood Apraxia of Speech, it may be a phrase that their child is able to say clearly after years of speech therapy. When I was pregnant with our son, I remember watching "Good Morning America" during National Autism Awareness Week and being struck by the ratio of boys compared to girls with Autism. I felt so scared to have a boy.

Andy was born a healthy boy, weighing in at 7 pounds 15 ounces, just like his sister. At 15 months, Andy said “bye bye” and we were so excited, I remember that day as clear as it was yesterday. That was the last time I’ve heard it said that clearly. Looking back I also recall how excited we had to get him before he could get the words out of his mouth. Things seemed to progress normally and then we noticed that Andy’s walking was unstable and he kept falling. We came to learn that he was Hypotonic, which means basically low muscle tone. But what people need to understand is how much being hypotonic can affect your entire body.

My husband and I yearned to hear the words “mommy and daddy” and they didn’t come. Andy was able to say a few words such as; truck, cap, sock and shoe. But eventually we no longer heard those. We watched him play and knew he understood what we told him but he just seemed to babble back at us. People thought it was cute and kept saying he’ll talk when he’s ready. I guess in my heart I knew it was more than that. We turned to our pediatrician for help and were referred to speech therapy. After meeting Andy’s speech therapist, Anne, I knew she was a fit for him. He seemed to bond with her and she helped us understand exactly what Apraxia could mean. We met for two or three sessions to have Andy evaluated. The diagnosis was severe Childhood Apraxia of Speech, also one of the most severe Anne has seen. Basically here’s where our journey begins.

Our first born, Madeline, I am convinced was born talking and hasn’t stopped since then. I began to notice that Andy “talked” as much but we just didn’t know what he was saying. Out of frustration, Andy began to bite and hit. Here’s this little boy trying to get us to understand and we just weren’t able to. It was one horrible fit after another. My daughter got the majority of the biting which still makes me feel horrible. I believe in Andy’s brain, that when he was babbling to us he was hearing what he wanted to say but what came out of his mouth was completely different. I would dread taking him places because he was like a super ball in a room and then add the fact that he wasn’t able to tell me what he wanted.

When Andy was about 18 months old, I kept waiting to hear him call me mommy. If he was very upset or worked up about something he would call out mama. People constantly said, "Don’t worry; he’ll talk when he’s ready." What we didn’t know was that Andy was ready to talk but physically he wasn’t able to. When I’ve told people that Andy is able to understand just about everything you say; he’s just unable to communicate back with his voice. I’ll be signing a few things to Andy and I have had people tell me, "Well he looks normal." That’s when I tell them that Apraxia doesn’t have a face. It truly affects more than an individual person. We try to make it an open topic within our lives. A few times when Andy has had meltdowns and I don’t understand why, I’ve had people look at me and stare. On the flipside, being so open has helped two of my friends from high school get help for their children.

Everybody wants the best for their children. But when one of your children has a problem the balance can be harder to maintain. Our daughter is very aware of her brother’s lack of speech, what she never forgets is that he understands almost everything people say. Having a son that has a special need has made my husband and me more aware of everything. When I tell people about Andy I never say there’s something “wrong” with him. There’s nothing wrong about him, he has trouble forming words is all I say.

Having a child with apraxia of speech has made me see the genuine goodness that people have and it’s also shown me the epitome of ignorance in society. For as difficult as a single day could be, we don’t know any other way. Honestly, I can’t even imagine what it would be like to have two children talking like my daughter does. We laugh about it and make jokes, but we pray for it every day.

Andy recently celebrated his fourth birthday and it was special. He was able to blow out his birthday candles! It was very exciting for my husband and I, as well as, Andy. If you asked me at age 22 would I ever cry at the sight of a boy blowing out a birthday candle, I’d probably tell you no. It was great!

Nobody ever really knows what life brings. I’m fascinated by the way children are taught in speech therapy, all the different things to help lessen the burden of Apraxia on a child. Watching Andy go from Speech to Occupational Therapy or Physical Therapy on a Monday afternoon just amazes. Some days there’s drastic improvement and other days, it seems like he’s regressed. At home, most of Andy’s play is based on his therapies. I don’t know many 4 year olds that hang from a chin up bar in the basement for fun. We often put small objects in rice to help with Andy’s sensory issues. I always say, rice is the new Play-doh! It’s funny to see the expression people get when they come over in the winter and we’re blowing bubbles.

I’ve declared this the summer of fun! After spending almost one year of doctor appointments ruling out Muscular Dystrophy, cardiac problems, neurological issues, genetic issues, vision and hearing problems, I think my family deserves it. Rather than running to a doctor's appointment, I try to make it a few hours at a park. One day my hope is that I’m standing watching my kids playing and Andy will stand up and say something like, "How am I doing mommy?" I also wonder how many things Andy will be able to tell me that his sister does and blames him! Either way, I look forward to both!

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

2009-06-26T07:11:00.004-04:00

[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!

Somewhere Over the Rainbow - How Childhood Apraxia of Speech Affects the Life of My Child and Family

2009-06-25T06:35:00.008-04:00

By Christa Stevens

[An essay in support of the scholarship application for CASANA’s 2009 National Conference on Childhood Apraxia of Speech]

One of the most memorable scenes from the classic film The Wizard of Oz is definitely the magnificence of the Emerald City. Remember how the Wizard requires all inhabitants and visitors to wear green-tinted spectacles? The view that these glasses offered made the Emerald City magical to Dorothy and her traveling companions, but it also distorted their vision and intensified the power of the Wizard over their lives.

Just like those green-tinted spectacles, my family’s vision has been totally jaded by our Elinor’s diagnosis of severe childhood apraxia of speech. The diagnosis has colored every aspect of our lives. To have a child who is entirely nonverbal has fundamentally changed how our family functions and experiences the world. To have a child who is nonverbal – but maybe isn’t doomed to be – if the “right” treatment decisions are made and implemented – is both overwhelming and debilitating.

To help conquer the powerful force of CAS my husband and I have changed our professional paths. He left behind a job he enjoyed and found fulfilling and aggressively sought out a new but extremely challenging professional opportunity to provide additional financial resources for our daughter’s therapies. I quit working full-time so that I can be my daughter’s full-time advocate. Elinor is extremely vulnerable because she cannot communicate that she is hurting, scared, or worried. She cannot tell me how the people that she is in contact with at school, for instance, treat her or make her feel. I have had to become an expert in reading her body language and monitoring her habits and behaviors. Her teachers, therapists, even her school bus driver, know that I am going to ask a lot of questions about her time with them. These actions have required my husband and me to be very assertive and step way outside our comfort zone. Often we could easily identify with the Cowardly Lion in the Wizard of Oz and feel desperately in need of the courage it takes to provide for Elinor’s special needs.

And just like the Scarecrow in the Wizard of Oz, I have had to put in a request for some additional brain power so that I can wade through the research and technical materials that help me understand my daughter’s diagnosis. The treatment options are vast and complex and I have spent countless hours researching the effectiveness of a variety of interventions such as hippotherapy, music therapy, nutritional support, ASL, AAC devices, and speech therapy methods. Furthermore, although I have no formal training in speech therapy, when one considers all the hours I am spending with speech therapists as they treat my daughter and the time I spend at home working with her individually, I may just end up being able to pass the state SLT licensing exam.

Sadly, the time that must be spent on Elinor’s special needs limits the time that is available for other activities. For example, I don’t cook for my family the way I would like and our house is often a mess. Elinor’s younger sister spends longer days at preschool than we would like but we feel it’s better that she be at school than sitting in the waiting room at therapy offices while Elinor gets treatments. I hear other women talk about scheduling “date nights” with their spouses and I remember the last set of “date nights” my husband and I had: six-weeks of evening ASL classes so that we could help build Elinor’s signing vocabulary. Right now we are considering taking our girls on their first family vacation but we don’t know if it would be wise to use the financial resources that way or disrupt Elinor’s therapy schedule.

Without a heart, the Tin Man in the Wizard of Oz was spared the persistent and unrelenting heartache that my husband and I feel as we deal with the severity of Elinor’s condition. We watch – and try to figure out our role – as other children come up to her and try to engage her in conversation and often end up walking away when Elinor is nonresponsive. We listen to other parents relate humorous stories about their child’s verbal precociousness: silly questions, grand storytelling, and energetic dialogue. Elinor’s little sister’s speech is developing normally and even this has been a bittersweet experience as we see how easily she produces sounds and can’t help compare her fluency with Elinor’s unrelenting struggle to produce verbal speech. And we feel desolation as we think that both sisters are missing out on developing the complex and intimate sibling relationship that is supported by spoken language. Our hearts beat fast as we rush Elinor through a hectic schedule to get her access to the educational and therapeutic experiences that she needs. And guilt weighs heavy on our hearts as we look back over the day and think of all the missed opportunities where we failed to integrate various therapeutic techniques into the daily tasks of family life. Our hearts are heavy and tired and have broken time and time again because of Elinor’s condition. But we just keep mending them and trying to find a safe place and way to grieve and then rejuvenate ourselves for the work that still needs to be done.

With childhood apraxia of speech, there is no magic answer – no set of ruby slippers – that is going to instantly cure our daughter of her severe language disorder. Our family is facing years and years of therapeutic interventions, an increasingly heavy financial burden, mind-numbing research, agonized decision-making of choosing among treatments, and long tedious work of implementing treatment plans. Even though we regard the world through the tinted spectacles of CAS, we are trying not to be permanently distorted by the view. We try to be honest and realistic about the journey that lies ahead for our family while still appreciating the marvel and magnificence of parenting our amazing and delightful daughters. We know the yellow brick road of parenting a child with CAS has taken us – and will continue to take us – down some difficult and troublesome paths. Although we cannot see what lies ahead or how long our journey will take us, we can clearly imagine our beautiful and enchanting Elinor impersonating Judy Garland as she sings:

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

We are getting ready for the National Conference on Childhood Apraxia of Speech

2009-06-24T18:01:00.002-04:00

Welcome to The Apraxia-KIDS Blog

2009-06-23T21:51:00.004-04:00

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!