An Open Letter

By David Ozab

To the anonymous donor who gave $60 to Team Anna for our 2012 Walk for Children with Apraxia of Speech:
 
I want to say "thank you." I know the chances of you reading this post are very small—perhaps infinitesimal—but on the slight chance you see a link to this post, I want to tell you a bit about the girl you're supporting and the many kids like her.
 
Anna is an amazing girl. I know I'm biased since I'm her dad, but she really is. She is six-and-a-half and she just started first grade: she loves to read, to swim, and to perform for anyone who'll watch, or when she's alone in front of a mirror. She wants to be an actress and I think she'll be a good one: we're looking into classes for next spring.
 
But to act she has to be understood and that's a challenge for her. At two-and-a-half years old she was diagnosed with Childhood Apraxia of Speech. CAS is a motor-speech disorder where her brain knows what to say but the mouth can't keep up. It's a spectrum disorder: some kids don't talk at all while others talk non-stop but can't be understood. Anna was in the latter category: she still is, but thanks to almost four years of intensive speech therapy, we now understand her most of the time. She's not done yet, but she's come a long way.
 
Speech therapy has made a huge difference in her life and we are grateful to all the speech language pathologists (SLPs) she has worked with over the last few years. SLPs undergo intensive training in order to work with children with CAS, and CASANA helps fund some of that training. They also fund research, iPad app development, and outreach to over 350,000 people each year through Apraxa-KIDS.com, the Apraxia-KIDS blog, and social media sites like Facebook and Twitter. None of this would be possible without donations like yours.
 
Every year, kids with Apraxia and their families participate in walks across the country to raise money and awareness. Last year, we walked with a small group of families in Salem, Oregon, and despite registering just before the deadline we still raised $360. This year, with more time to plan, we hoped to do better.
 
We did. My wife's employer gave us $1000 (meeting our original goal) in early-September. Friends and family contributed too. And Anna decided to do her part. She saved change from household chores in a special Apraxia piggybank, set up a lemonade stand during a church garage sale, and contributed half of the money she made selling her pre-school aged toys in the same sale. She raised $50 all by herself, which we matched to bring her total contribution to $100.
 
After the sale was over, we submitted her contributions to our fundraising page, leaving us only $60 short of out new goal of $1350. I posted the story of her lemonade stand on both Facebook and Twitter and with less than two weeks to go we hit our goal.
 
Thanks to you, anonymous donor.
 
It's been said by many people that the greatest testimony to a person's character is what he or she does when no one is looking. This contribution, however big or small it may seem to you, is a great testament to your character. You didn't give it in hope of recognition. You knew that no one would ever know your identity and yet you gave anyway.
 
We will never know your name, but we will always be grateful.
 
Sincerely,
 
David, Julia, and Anna Ozab.

______________________________________________________________________________________________
Biography: David Ozab is currently editing and revising his first non-fiction book, A Smile for Anna, which tells the story of his daughter’s cleft diagnosis and surgery, her difficulties with speech, and her incredible outgoing spirit through it all. He is a Contributing Editor at About This Particular Macintosh and a Guest Contributor at MyEugene. His writing has been (or will be) featured such diverse publications as Chicken Soup for the Soul, Errant Parent, and Catholic Digest. He is a stay-at-home dad and blogs about parenting and life at Fatherhood Etc (http://www.fatherhoodetc.com). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.

For more information on David Ozab, visit his website at http://www.davidozab.com/ 

A Bit of an Accent

By David Ozab

“Will my child be accepted?” It’s a question every parent asks, particularly parents of kids with Apraxia of Speech. I’ve asked that question myself many times. My daughter Anna has always made friends easily, but as other children her age became more verbal, I began to notice a barrier forming between her and them. It’s been two years, but this incident still sticks with me. She had just turned four, and it was the first time she was excluded because of her Apraxia.

We were at our local mall's playland that day—one of Anna’s favorite places to play. She likes the waterfall themed slide, the hollow log topped with a lounging bear, and the big red canoe. I like that there's only one way in or out so it's easy to keep an eye on her.

I sat by the entrance as I always do. I had my notebook at hand to catch any cute or funny things Anna might say. She ran around, slid down the slide, and made friends with all the kids—it was spring break so there were lots of kids to play with. She approached an older girl who was sitting on the bear and asked the same question she always does:

"Do you want to play with me?"  The girl didn't understand, so I repeated it.

"She got a bit of an accent," the girl replied.

"Yeah," I said. "She's in speech therapy."

The girl shrugged her shoulders, slid off the bear, and ran over to the slide. Anna followed, of course, like she always does when she wants to be friends.

A few minutes later, I saw Anna talking to the older girl, who sat by the slide with two other girls closer to Anna's age. The girls struggled to understand Anna so I walked over and helped translate:

"She said 'My name is Anna, what's your name?’”

"I'm Whitney," the older girl said.

"Do you want to play with me?" Anna asked again. I repeated what Anna said so the girls would understand.

"This game's for three," Whitney said. "I'm the mommy cat, and they're the kittens."

I wasn't sure if the girls were excluding Anna on purpose, or if they’d created a three-person game, but I quickly thought of a way they could include her.

"Can't there be three kittens?" I asked. "Like the song?"  I sang a verse of The Three Little Kittens. Anna and the two younger girls smiled, but Whitney shook her head.

"This is a different game.” She got up and walked away. The two younger girls followed her. Anna started off too, but I called her over.

"Anna, they’ve already started their game."

She pouted. “But I want to play with them.”

"There are lots of kids here. Why don't you find another one to play with?”

I gave her a hug and sent her on her way. Within five minutes, she and another girl were running around the play area, sliding down the slide, and laughing. She was over the snub.

But me? Not so much. It's something I've worried about since she was first diagnosed with Apraxia. She's always made friends so easily, but as she grows older, will she be seen as different and shunned by some of the kids? Her speech is improving rapidly, but she may need years of therapy to be completely understandable and even then she may never lose her "accent."

How will she handle the rejection? How will I? How much do I shield her? How much do I let her experience so she can learn to take it and ultimately ignore it?

Those questions were on my mind the rest of the day, and they’ve nagged at me ever since. Every time she enters a new social situation, I always wonder if she’ll be singled out because of her speech.

Almost two years have passed since that day at the mall. She’s six now, and has just started the second semester of Kindergarten in our neighborhood public school. She still has trouble being understood at times, but she's had no trouble making friends. Her outgoing personality and our constant encouragement have made a big difference. So has her ongoing therapy. Other than her “accent,” her classmates see her as another girl in their class.

If you are a parent of a child about to enter school, and you're worried about how your child will fit in, I hope that I've eased your worries a little bit. Yes it can be difficult, but in my experience it's never as bad as we imagine it will be. Take advantage of all the support that's given to you, and then let your child have fun.

______________________________________________________________________

Biography: David Ozab is currently editing and revising his first non-fiction book, A Smile for Anna, which tells the story of his daughter’s cleft diagnosis and surgery, her difficulties with speech, and her incredible outgoing spirit through it all. He is a Contributing Editor at About This Particular Macintosh and a Guest Contributor at MyEugene. His writing has been (or will be) featured such diverse publications as Chicken Soup for the Soul, Errant Parent, and Catholic Digest. He is a stay-at-home dad and blogs about parenting and life at Fatherhood Etc (http://www.fatherhoodetc.com/). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.

Links:
David Ozab: Writer http://www.davidozab.com/ Salem, Oregon 

Early Advocacy Made the Difference

By Sheri Larsen

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

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

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

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

CJ was officially diagnosed with Apraxia of Speech.

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

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

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

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

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

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

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

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

Every child deserves a voice.

More about Sheri Larsen



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

Quiet

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.

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

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."

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

[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

[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.

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

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

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

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

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

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

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

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

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

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

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

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