tag:blogger.com,1999:blog-64478921877392215412024-03-06T03:40:53.883-05:00Apraxia-KIDS - Every Child Deserves a VoiceThis is the blog site of Apraxia-KIDS, a program of (CASANA) The Childhood Apraxia of Speech Association of North America. Our mission is to improve the systems of support in the lives of children with apraxia so that each child is afforded their best opportunity to reach their full potential in speech and in life.Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-6447892187739221541.post-52647775454143059382013-12-18T19:54:00.004-05:002013-12-19T09:03:03.410-05:00How Danny Keefe Found His Voice - A Most Unusual Story<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1VSUqitBdl6hw19alu6ox0HqE-JUYgEvvHnnlyl9QZIgdtMLB_MURFdYrdOo2NNw8B9K2xDgi3gpppip4elmLXdz4Z8Sl-QkbrXjK12CAfPYJrGjzhpnD42Ool3TLUMLXtaLkfz-WeM4/s1600/DannyKeefeWalk.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1VSUqitBdl6hw19alu6ox0HqE-JUYgEvvHnnlyl9QZIgdtMLB_MURFdYrdOo2NNw8B9K2xDgi3gpppip4elmLXdz4Z8Sl-QkbrXjK12CAfPYJrGjzhpnD42Ool3TLUMLXtaLkfz-WeM4/s200/DannyKeefeWalk.jpg" width="146" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Danny at Apraxia Walk</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;"><i>By Jennifer Keefe</i></span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;"><br />As a mother of four, my first job is to protect my children to ensure their safety, keep them happy and feel loved. With Danny, my instincts to protect are very different than how I want to protect his siblings.</span></span><br />
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Danny has childhood apraxia of speech (CAS) and was diagnosed at 3 years old. When asked how he compared to other children with CAS, I was told he was severely unintelligible. They didn't have to tell us that we already knew it as we had a very difficult time understanding him. Although his siblings could understand most of what he said and could help us out.<br />
<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><br /></span><span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">At home, Danny is treated just like his siblings. No special treatment just another member of the Keefe household. Sometimes I would forget he had trouble speaking and communicating clearly until we left the safety of our house and I would hear children younger than him speaking clearly. It was especially hard watching his younger cousins speak so clearly when he struggled so much. His cousins have always supported him, they say cousins become your first friends, we believe that.</span><br />
<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><br /></span><span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">I was afraid to send Danny to school for fear he would get picked on by classmates. It was so hard to let him go off to school when my instincts were telling me to hold on and protect him from potential hurt. I knew I had to send him, he needed it and was ready even if I wasn't.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;">His years in preschool went well. He made friends. We all felt safe. Then it was time for kindergarten. His first year was OK, some children questioned why he talked the way he did, did he speak Spanish and although they weren't picking on him, the words hurt Danny deeply. I still remember Christmas of 2012 when the biggest gifts he asked for was a world globe. When I asked Danny why he told me so he could show his classmates he was from America like them and not from another part of the world. He wanted them to know that was just like them. My heart broke. I couldn't stop this from happening to him. That year Santa brought him his globe and he was so happy!</span></span></span><br />
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">Another thing happened that year is that Danny decided he was most comfortable in a suit and hat. He wears a suit seven days a week and walks with confidence, as he should!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji3Q3qsu9i8C_a2pfdyaqEghG3jxx41CF3_ow87vktekvUWPnJr4aaNxAlQqelPUBgPpFLOq6pqz4sNA2HopVYEB6pilRvo3s6sVeWecYVArx0QRaQz1z8PzFfeTvFEvLLeiuOf-2bgHo/s1600/band-of-brothers-2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="121" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji3Q3qsu9i8C_a2pfdyaqEghG3jxx41CF3_ow87vktekvUWPnJr4aaNxAlQqelPUBgPpFLOq6pqz4sNA2HopVYEB6pilRvo3s6sVeWecYVArx0QRaQz1z8PzFfeTvFEvLLeiuOf-2bgHo/s200/band-of-brothers-2.jpg" width="200" /></a></div>
<span style="font-family: Trebuchet MS, sans-serif; font-size: 15px;"><span style="background-color: white;">This year, Danny repeated kindergarten, not just because of CAS, but it did play a role in our decision. This time, though, he would go four full days and one, half day, which meant he would be at school all day and have to go to recess and lunch. While he was very excited about this, I cringed. I knew for some children that these were times of the day when they should be carefree can sometimes be the worst part of their day. </span></span><span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">For Danny that became true.</span><br />
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">For the most part, he has more great lunches and recess outings than bad, but when they are bad he cries and I cry. Truly, as a mom, it is the most helpless feeling not to be there to protect your child from bad things happening to them. When he would come home upset we talked about it as a family and our motto was, "it doesn't matter what people think of you it only matters what you think of yourself." It was hard saying it when Danny's heart was breaking, but my husband and I believe this. We would also talk about all of the great people in his life.</span><br />
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">One day Danny came home and told me how two little boys took his hat off, threw it and then proceeded to throw mulch in his hair. I was so angry - beyond words - and I wanted to march on that playground and speak to those little boys, but Danny looked at me - not even angry - and told me, </span></div>
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><span style="background-color: white; font-size: 15px;"><span style="font-family: Trebuchet MS, sans-serif;">"It doesn't matter what they do, Mom. It only matters what I think of myself." </span></span></span></blockquote>
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7UroCasFvzUYmwNH8zsT9aHdESUk_4K5yusXhkP8RRWDcYwD-ZyYNvcyKkRj_K1XeGvYOEsbFyqdx6bytbZaPFyPHm3YAIHBE5VcSS1nh2hRmYKhYVuVVKL8CWgI2X5FTCPENjQfbxVQ/s1600/-kids-suit-up-to-support-bullied-danny.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7UroCasFvzUYmwNH8zsT9aHdESUk_4K5yusXhkP8RRWDcYwD-ZyYNvcyKkRj_K1XeGvYOEsbFyqdx6bytbZaPFyPHm3YAIHBE5VcSS1nh2hRmYKhYVuVVKL8CWgI2X5FTCPENjQfbxVQ/s200/-kids-suit-up-to-support-bullied-danny.jpg" width="200" /></a></span></div>
<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">What I didn't expect, but should have realized, was how these stories were also affecting his siblings. His oldest brother Tim was deeply upset by what was happening to his brother. Tim didn't tell us; he confided in his friends. The friends were so impressed that a six-year-old said that it didn't matter because it only matters what he thought of himself, that one 11-year-old boy started a movement. The boy didn't know it at the time, he just wanted to support Danny and show Danny that he loved him by also wearing a suit and fedora to school. Then the word started to spread through the entire 5th grade football team that November 20, 2013 was going to be "Danny Keefe Awareness Day." There were 45 boys who came to school to show my son, Danny Keefe, that they love and support him.</span><br />
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">My wish has come true. Danny is protected and it doesn't always have to be just my husband and I, but that our community is also there to help him!</span></div>
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;">Since November 20th our lives have changed. Locally, schools are sponsoring Danny Awareness Days and</span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRTUTg64Zw-biRBG3mPrqdUBZqLowTHBhIx9JI02FejefWWKHvhwKJUqcgOIxRD_8_EB_HSWDvK7-cDe4j_rzsHtop2WrY4i-OIVzOn36p3fMuQPRtgTe15VIr3cS94OoFp29Y4RyY0Js/s1600/DannyKeefe3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: black;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRTUTg64Zw-biRBG3mPrqdUBZqLowTHBhIx9JI02FejefWWKHvhwKJUqcgOIxRD_8_EB_HSWDvK7-cDe4j_rzsHtop2WrY4i-OIVzOn36p3fMuQPRtgTe15VIr3cS94OoFp29Y4RyY0Js/s200/DannyKeefe3.jpg" width="196" /></span></a><span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;"> everyone dresses in suits and hats. His story is being told in classrooms near and far. This story has been aired locally and nationally. Most recently, Danny sat across from and spoke with Ellen DeGeneris on The Ellen Show and then demonstrated to the world his famous dance moves. </span></span><span style="font-family: Trebuchet MS, sans-serif;"><br style="background-color: white; font-size: 15px;" /></span><span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;"><i><b><br /></b></i></span></span></span></div>
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; font-size: 15px;"><i><b>Even though Danny has Apraxia, Danny's voice is being heard by millions</b></i> and I'm not afraid for him anymore - (well maybe a little)! He is one of the strongest, most self confident people that I know. We are so proud of him, our family, community and all of those people out there that have taken the time to reach out to us. We feel very blessed and lucky to have this support for our little Danny Keefe. </span></span></span></div>
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<span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;"><span style="background-color: white; font-family: 'Trebuchet MS', sans-serif; font-size: 15px;">As a mom it felt great that the lessons we were teaching actually were paying off, but I felt terrible that he had to endure even an ounce of pain. </span></span></div>
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</span>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com4tag:blogger.com,1999:blog-6447892187739221541.post-63707308222504860572013-01-08T13:03:00.004-05:002013-01-08T15:23:35.964-05:00The Relationship Between Treatment Intensity & Treatment Outcomes for Children with Apraxia of Speech<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizwbMIgEfvbkd-ZLC39imzpSiVTgVzSrFHqn2fVENvvKj7Zc6UOeHoJfqpzEfbrTu7lQuxfKt_knS5SrApM60u7ySs3jY6CQXXrePw5_ycTLbdxRifQRGowP89pOuXFhSR9fDA0Pg2fGY/s1600/child-and-therapist.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="208" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizwbMIgEfvbkd-ZLC39imzpSiVTgVzSrFHqn2fVENvvKj7Zc6UOeHoJfqpzEfbrTu7lQuxfKt_knS5SrApM60u7ySs3jY6CQXXrePw5_ycTLbdxRifQRGowP89pOuXFhSR9fDA0Pg2fGY/s320/child-and-therapist.jpg" width="320" /></a><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">by <span class="il">Aravind</span> <span class="il">Namasivayam</span> Ph.D. S-LP(C)</span></div>
<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;"><br />Childhood
Apraxia of Speech (CAS) is in terms of diagnosis and treatment a very
challenging and complicated speech disorder in children. Children with CAS find
it difficult or impossible to accurately produce speech sounds and/or words
despite having a good understanding of language. Although there are several
treatment approaches for CAS, there are very few published studies examining
their efficiency and effectiveness. For example, at present, we do not know the
amount of change in speech intelligibility (the <span class="googqs-tidbit"><span style="line-height: 115%; mso-ansi-font-size: 12.0pt;">degree by which their speech
can be understood by a listener)</span></span> or their ability to communicate
effectively in real world situations (i.e., functional communication) following
treatment. We also do not know if more intense treatment (although promoted by
most clinicians) is actually better for this population.<span style="mso-spacerun: yes;"> </span>Thus, there is a strong need for
well-designed research studies in this area to advance clinical practice.<o:p></o:p></span></span><br />
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<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">In
July 2011, the Childhood Apraxia of Speech Association of North America
(CASANA) awarded a competitive clinical treatment research grant to Dr. Aravind
Namasivayam of the Speech and Stuttering Institute in Toronto, Ontario, Canada.
His team consisted of experts in the areas of CAS research (Dr. Ben Maassen, University
of Groningen in the Netherlands), speech science (Dr. Pascal van Lieshout,
University of Toronto in Canada) and speech disorders treatment (Ms. Margit
Pukonen from the Speech and Stuttering Institute, Toronto, Canada). The CASANA
funding was used in support of the research project titled “Exploring the
Relationship Between Treatment Intensity and Treatment Outcomes for Children
with Apraxia of Speech”.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">Using
the funds from the CASANA grant a specialized screening tool was developed to
identify a subpopulation of two to five-year-old children, who demonstrated
characteristics of CAS, from a larger database of 102 preschool age children
with motor speech issues. All children received a specialized motor speech
treatment program delivered by qualified speech-language pathologists in one of
two possible treatment formats: high-intensity (2 times a week for 10 weeks) or
low-intensity (1 time a week for 10 weeks). Each speech therapy session lasted for 45 minutes. The speech-language pathologists
providing the treatment were randomly assigned to either of these treatment
formats. A child’s ability to correctly produce speech sounds in words, speech
intelligibility and functional communication were evaluated both before and
after treatment. Speech intelligibility was assessed at the word-level
(percentage of words correctly identified by a listener) and at the
sentence-level (percentage of words correctly understood in imitated sentences
by a listener). </span></span><br />
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<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">Overall, the results of the study demonstrated that the
outcomes of the high-intensity treatment were superior to those of the
low-intensity treatment. Specifically, high-intensity treatment resulted in a
significant change in a child’s speech production abilities, word-level
intelligibility and functional communication when compared to low-intensity
treatment.<span style="mso-spacerun: yes;"> </span>Furthermore, high-intensity
treatment produced almost twice the amount of positive changes and had fewer
children failing in treatment (i.e. not showing any real progress- especially
for speech production) relative to the low-intensity treatment.<span style="mso-spacerun: yes;"> </span>However, neither high- nor low-intensity
treatment improved sentence-level speech intelligibility in children with CAS. <o:p></o:p></span></span></div>
<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">This CASANA funded study
represents the largest data set available to-date relating the amount of
therapy induced change and treatment dose and its effects on speech
intelligibility and functional communication outcomes in children with CAS. The
results from the study could be used to set appropriate levels of clinician and
parental expectations prior to treatment and could potentially guide clinical
practice (e.g. amount and possibly type of treatment required for this
population). </span></span><br />
<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;"></span></span><br />
<span lang="EN-GB" style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">Importantly, even though positive changes were found for speech
production and functional communication in CAS children with 20 sessions (2
times a week / 10 weeks) there was only minimal improvement in sentence-level
speech intelligibility following treatment. Thus, the CAS children may benefit
from more than 20 sessions of therapy and from a treatment program that
systematically builds in practice of speech production targets in longer
utterances (i.e. phrases, sentences, connected speech). At present additional
analyses are being carried out to identify factors contributing to positive
outcomes in children with CAS. For example, we ask which of the following
factors affect a child’s treatment outcomes: child’s participation in the
therapy process, amount of home practice and/or quality of parent-child
interaction? With further analysis, we will be able to identify key factors
that contribute to positive treatment outcomes in children with CAS and thus
make a significant contribution to future clinical practice in this area.</span></span><br />
<span lang="EN-GB" style="line-height: 115%;"><span style="font-family: Calibri;"><br /><em><span style="font-size: x-small;">[CASANA funded research dollars are raised through the Walk for Children with Apraxia]</span></em></span></span><br />
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Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com3tag:blogger.com,1999:blog-6447892187739221541.post-42036384198953230952012-12-13T14:39:00.000-05:002012-12-13T14:41:26.878-05:00Exploring New Treatment Methods for Childhood Apraxia of Speech<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA2xGy4q2neQuj464M15XI_geQR0Rt2cfkOSDdAVOCVX8lxpHTyHg-0zcWdrrZIvawH10FH2uSSOK8Bo2s7Usju6PdAfxgN-uP_2gsnYB00tQ-JEZQwmxEZ22mPEjkZQqKwPTMK9k9ROw/s1600/tongue.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA2xGy4q2neQuj464M15XI_geQR0Rt2cfkOSDdAVOCVX8lxpHTyHg-0zcWdrrZIvawH10FH2uSSOK8Bo2s7Usju6PdAfxgN-uP_2gsnYB00tQ-JEZQwmxEZ22mPEjkZQqKwPTMK9k9ROw/s200/tongue.jpg" width="200" /></a></div>
<span style="font-size: 11pt;"><span style="font-family: "Trebuchet MS", sans-serif;">A study funded by CASANA was
completed by Dr. Jonathan Preston, a researcher from Haskins Laboratories (</span><a href="http://www.haskins.yale.edu/"><span style="color: blue; font-family: "Trebuchet MS", sans-serif;">www.haskins.yale.edu</span></a><span style="font-family: "Trebuchet MS", sans-serif;">) and Southern
Connecticut State University. The research involved using ultrasound (the same
device used to obtain images of a fetus or heart) to provide a real-time visual
display of the tongue. The ultrasound transducer is held under the chin, and
the ultrasound images are then used to teach children how to move their tongue
into different positions to produce certain speech movements. Speech-language
pathologists can use this information to provide the child with cues about the
tongue.<o:p></o:p></span></span><br />
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<span style="font-size: 11pt;"><span style="font-family: "Trebuchet MS", sans-serif;">One advantage of using
ultrasound biofeedback for children with persisting speech errors is that both
the clinician and the child have more information about what the child is doing
with the tongue when he or she speaks. Additionally, clinicians can provide
more direct and explicit cues to the child, such as “move this part of your
tongue up here,” and the child can readily see if the movement was produced
properly. <o:p></o:p></span></span></div>
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<span style="font-size: 11pt;"><span style="font-family: "Trebuchet MS", sans-serif;">Among the disadvantages of
this approach are the cost of the equipment (the ultrasound probe costs about
$5,500) and the need for clinicians to be trained in the approach.<span style="mso-spacerun: yes;"> </span>Presently, only a few clinics in the country
are using ultrasound biofeedback therapy. In general, children younger than 7-8
years are probably not good candidates for this type of therapy because it
requires a great deal of focus and is not as “play-based” as some other therapy
approaches.<o:p></o:p></span></span></div>
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<span style="font-size: 11pt;"><span style="font-family: "Trebuchet MS", sans-serif;">The target group of children
for this study was children who had speech errors that had not resolved by the
age of 9 years.<span style="mso-spacerun: yes;"> </span>Six children, ages 9-15,
participated in the study for 18 therapy sessions. All children had been
resistant to traditional treatment methods and were showing limited progress in
their school-based speech therapy programs.<span style="mso-spacerun: yes;">
</span>All of the participants in the study showed improvement in their speech
sound accuracy on treated sounds, and all parents reported improved speech
intelligibility.<span style="mso-spacerun: yes;"> </span>Specifically, each
child achieved 80% accuracy or higher on at least two treatment targets, and
some children showed substantial generalization to sound patterns that were
untreated.<span style="mso-spacerun: yes;"> </span>Dr. Preston cautions that not
all children necessarily respond equally well and that further research is
needed. However, the use of ultrasound biofeedback therapy holds potential to
become another tool in the toolbox for treatment of children with persistent
speech errors.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 11pt;"><span style="font-family: "Trebuchet MS", sans-serif;"></span></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-size: 11pt;"></span><span style="font-family: "Times New Roman","serif"; font-size: 11pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Trebuchet MS", sans-serif;">Dr. Preston has recently applied for federal funding
to continue to support this research.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 11pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 11pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: Trebuchet MS;"><em>[Note: CASANA research grants are made possible by funds generated by the </em><a href="http://www.apraxiawalk.org/" target="_blank"><em>Walk for Children with Apraxia</em></a><em>]</em></span></span></div>
Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com2tag:blogger.com,1999:blog-6447892187739221541.post-31379648087228332652012-10-08T14:43:00.000-04:002012-10-08T15:01:56.825-04:00An Open Letter<span style="font-family: "Trebuchet MS", sans-serif;"><em>By David Ozab</em>
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiQxqb7xU7CLHvDxuFvqewOupLSTz4V5FE9JBDmobtyBkJVn7o_UhTqcYPDiAPraoRGwxmlO56W1FdGPfBzU7M2v4of9cb_AVZudeZ06aKAtlm1M0f9o69fI23I57y9DsRHiEvz4NVy0o/s1600/2011_TeamAnna_Salem.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiQxqb7xU7CLHvDxuFvqewOupLSTz4V5FE9JBDmobtyBkJVn7o_UhTqcYPDiAPraoRGwxmlO56W1FdGPfBzU7M2v4of9cb_AVZudeZ06aKAtlm1M0f9o69fI23I57y9DsRHiEvz4NVy0o/s400/2011_TeamAnna_Salem.jpg" width="271" /></span></a></div>
<span style="font-family: "Trebuchet MS", sans-serif;"></span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">To the anonymous donor who gave $60 to Team Anna for our 2012 Walk for Children with Apraxia of Speech:
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">Thanks to you, anonymous donor.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">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.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">We will never know your name, but we will always be grateful.
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">Sincerely,
</span><br />
<span style="font-family: "Trebuchet MS", sans-serif;"> </span><br />
<span style="font-family: "Trebuchet MS", sans-serif;">David, Julia, and Anna Ozab.</span> <br />
<br />
<span style="font-family: Trebuchet MS; font-size: x-small;">______________________________________________________________________________________________</span><span style="font-size: x-small;"><span style="font-family: "Trebuchet MS",sans-serif;"><br /><b>Biography:</b> <i>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
(<a href="http://www.fatherhoodetc.com/"><span style="color: #2288bb;">http://www.fatherhoodetc.com</span></a>). He
lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits
named Jellybean and Oreo.</i></span></span>
<br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif; font-size: x-small;">For more information on David Ozab, visit his website at </span><a href="http://www.davidozab.com/"><span style="color: #2288bb; font-family: "Trebuchet MS", sans-serif; font-size: x-small;">http://www.davidozab.com/</span></a><span style="font-family: Trebuchet MS; font-size: x-small;"> </span> Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6447892187739221541.post-15536584071023359362012-03-13T13:29:00.004-04:002012-03-13T14:12:33.926-04:00A Bit of an Accent<div style="font-family: "Trebuchet MS",sans-serif;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSR6JGmqqmj6XmqUyYBQ49Hs79SP9JxRehlnbT5yif9XtJxlkQWAWBW37IKiXWEC96Kd6ZtE6G3l0gWtARQO6yvAxzANcxZLnGfQ0LKyIxxcuBylsaHY-Y_oYLE7Rpc_ICTebB9ZzYUfM/s1600/Anna-Daddy-Berries-Profile.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSR6JGmqqmj6XmqUyYBQ49Hs79SP9JxRehlnbT5yif9XtJxlkQWAWBW37IKiXWEC96Kd6ZtE6G3l0gWtARQO6yvAxzANcxZLnGfQ0LKyIxxcuBylsaHY-Y_oYLE7Rpc_ICTebB9ZzYUfM/s200/Anna-Daddy-Berries-Profile.jpg" width="200" /></a></div><span style="font-size: small;"><i>By David Ozab</i><br />
<br />
“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.<br />
<br />
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.<br />
<br />
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:<br />
<br />
"Do you want to play with me?" The girl didn't understand, so I repeated it.<br />
<br />
"She got a bit of an accent," the girl replied.<br />
<br />
"Yeah," I said. "She's in speech therapy."<br />
<br />
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.<br />
<br />
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:<br />
<br />
"She said 'My name is Anna, what's your name?’”<br />
<br />
"I'm Whitney," the older girl said.<br />
<br />
"Do you want to play with me?" Anna asked again. I repeated what Anna said so the girls would understand. <br />
<br />
"This game's for three," Whitney said. "I'm the mommy cat, and they're the kittens."<br />
<br />
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.<br />
<br />
"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.<br />
<br />
"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.<br />
<br />
"Anna, they’ve already started their game."<br />
<br />
She pouted. “But I want to play with them.”</span></div><span style="font-size: small;"><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">"There are lots of kids here. Why don't you find another one to play with?”</span><br style="font-family: "Trebuchet MS",sans-serif;" /><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">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.</span><br style="font-family: "Trebuchet MS",sans-serif;" /><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">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."</span><br style="font-family: "Trebuchet MS",sans-serif;" /><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">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?</span><br style="font-family: "Trebuchet MS",sans-serif;" /><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">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.</span><br style="font-family: "Trebuchet MS",sans-serif;" /><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">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.</span><br style="font-family: "Trebuchet MS",sans-serif;" /><br style="font-family: "Trebuchet MS",sans-serif;" /><span style="font-family: "Trebuchet MS",sans-serif;">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.<br />
<br />
______________________________________________________________________</span></span><br />
<span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"><br />
<b>Biography:</b> <i>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 (<a href="http://www.fatherhoodetc.com/">http://www.fatherhoodetc.com</a>/). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.</i><b><br />
<br />
Links:</b><br />
David Ozab: Writer <a href="http://www.davidozab.com/">http://www.davidozab.com/</a> Salem, Oregon </span></span>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com5tag:blogger.com,1999:blog-6447892187739221541.post-13379116610097186392012-01-26T14:30:00.001-05:002012-01-26T14:17:57.437-05:00Early Advocacy Made the Difference<em>By Sheri Larsen</em><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYL5YdHOmFoxcxP9V-4iy9_1gIUjWdqgs62PQsCn3EWaV56zLFkej5im-eW3SS0Cbzo0huQzrMQr_1ivxUzPSbcyU8HlvdON46AZJUKusqmdlhbtnWg-mLh-mnLda07dZCQV5mmJah9_I/s1600/CJ1.jpg"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnx1-HQyFo_M-fv2zjdfGCLJ661i8-VzhY1fIL55dzQiO7dobBXzb5TLcOK93I-L1vehnzp_9TZbXjEs7Mwbsq8Zu_9XtNEMKVlH9mqyYDD47Xhx47TSOZcI3fVhzVINGih6CZ4cZ-qGA/s1600/CJ1.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 154px; FLOAT: right; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5702013052604220786" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnx1-HQyFo_M-fv2zjdfGCLJ661i8-VzhY1fIL55dzQiO7dobBXzb5TLcOK93I-L1vehnzp_9TZbXjEs7Mwbsq8Zu_9XtNEMKVlH9mqyYDD47Xhx47TSOZcI3fVhzVINGih6CZ4cZ-qGA/s320/CJ1.jpg" /></a><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />CJ was officially diagnosed with Apraxia of Speech.<br /><br />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.<br /><br />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.<br /><br />CJ had lots to say. He only needed help finding his voice.<br /><br />My greatest joy was the first time I heard him say, “Mama.”<br /><br />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.<br /><br />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.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7t8bmlqiz-YKXJ-8QAgXh-_WxaHL9UieOALXHJU7h3UbRPlfkDNl9Xpz7yUqxlsSIerGh9rJpIgMxR3mQ2pab-bTud52jBCfnvx-w_M-GkCyulsaFaSTfoOHV6IHXT3vIv7sS8cTfU4A/s1600/Sheri5.jpg"></a><br />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.<br /><br />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.<br /><br />Every child deserves a voice.<br /><br /><strong><u>More about Sheri Larsen</u></strong><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1h4-uIhUvjdr7cHJIxx3EGEtpJ_3n9l01om1g3ejFzmoBKY8RyiGMVJoTTPznU8Y86ziuSx5RI0MPvozMhBN5tfGiu75DB6Hb3ds6vaeFZxhT3m1GxwFcqUhCYBZtC-_NL6lR3nnXNes/s1600/Sheri5.jpg"><img style="WIDTH: 400px; HEIGHT: 265px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5702011922147370978" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1h4-uIhUvjdr7cHJIxx3EGEtpJ_3n9l01om1g3ejFzmoBKY8RyiGMVJoTTPznU8Y86ziuSx5RI0MPvozMhBN5tfGiu75DB6Hb3ds6vaeFZxhT3m1GxwFcqUhCYBZtC-_NL6lR3nnXNes/s400/Sheri5.jpg" /></a><br /><br /><em>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 (</em><a href="http://writersally.blogspot.com/"><em>http://writersally.blogspot.com</em></a><em>), is where she explores writing, children’s literature, and motherhood. She lives in Maine with her husband and four children.<br /></em>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6447892187739221541.post-57609293469680310222012-01-03T09:26:00.031-05:002012-01-04T13:35:57.169-05:00Father Leads Team to Raise Awareness and Over $22,000 in 2011 Denver Apraxia Walk<p align="left"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5U44UOkS062KfS5K9s4MPoRP5Xv5o1dgWKB5XwuzKV0f2Vt1sZiOhYI4Zc0tKQu5NCGglrJId4BMXPx0pxyiO3NHw1tJxCXKuuB-luUV8He5RQ2mrGnAYNm2xExQ4D-UnTocmmoL286s/s1600/Green_1.jpg"><img style="WIDTH: 400px; HEIGHT: 275px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5693778059811359858" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5U44UOkS062KfS5K9s4MPoRP5Xv5o1dgWKB5XwuzKV0f2Vt1sZiOhYI4Zc0tKQu5NCGglrJId4BMXPx0pxyiO3NHw1tJxCXKuuB-luUV8He5RQ2mrGnAYNm2xExQ4D-UnTocmmoL286s/s400/Green_1.jpg" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZt_XKWB7Hvxd5xCefIOn_7EurMZhgOIAsgg4HcaXb95YBgIXAjTe1sL8Ri5OJExSjS5Xe0BHmMnpMVenDltqvfh6afeMQHBMgfKAi8lRiqxtCkVuFSowcOesq_HYXbMQ0riBpKTf8Lek/s1600/green2.jpg"><img style="WIDTH: 400px; HEIGHT: 265px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5693778435564655314" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZt_XKWB7Hvxd5xCefIOn_7EurMZhgOIAsgg4HcaXb95YBgIXAjTe1sL8Ri5OJExSjS5Xe0BHmMnpMVenDltqvfh6afeMQHBMgfKAi8lRiqxtCkVuFSowcOesq_HYXbMQ0riBpKTf8Lek/s400/green2.jpg" /></a><br /><span style="font-size:78%;"><em>(Top Photo from left to right: Jill (Gillian) Green, Saoirse Green, Dan Green, and Siobhan Green; Bottom </em></span><span style="font-size:78%;"><em>Photo: Siobhan Green)<br /><br /></em></span>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.<br /><br />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.<br /><br />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).<br /><br />“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.”<br /><br />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.<br /><br />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.<br /><br />“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.<br /><br />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.<br /><br />“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.”<br /><br />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.<br /><br />“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.”<br /><br />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.<br /><br />“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.”<br /><br />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.’”<br /><br />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.<br /><br />“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.<br /><br />To find out more about the Walk for Children with Apraxia of Speech, visit: <a href="http://www.apraxiawalk.org/">http://www.apraxiawalk.org/</a></p><br /><br /><br /><div align="left"></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6447892187739221541.post-80527735844148837602011-11-30T08:34:00.010-05:002011-11-30T09:14:09.617-05:00YOU'RE A STAR<em><span style="color:#000000;">This poem was written by 10-year-old Megan Stephens. She wrote this poem for her younger brother, Dawson, who has apraxia. </span></em><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3DBrX6Afl7N9zBMgxDmKWFuxOekZPflhWWBJQwEd7GCEOjeH_KUSXPl6hCt5GAQ6Sc89y9xMAT2869tcrJLf5dXzzmovcMek4SLn2I3v083mIQ8g-hwBgbEQUii8hT3Wx-K4Vohf-N78/s1600/MP900431006.JPG"><img style="WIDTH: 200px; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5680788138395850354" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3DBrX6Afl7N9zBMgxDmKWFuxOekZPflhWWBJQwEd7GCEOjeH_KUSXPl6hCt5GAQ6Sc89y9xMAT2869tcrJLf5dXzzmovcMek4SLn2I3v083mIQ8g-hwBgbEQUii8hT3Wx-K4Vohf-N78/s200/MP900431006.JPG" /></a><br /><br />Through my sight,<br />I can see your fright,<br />But it’s alright.<br />It’s not your fault.<br />You’ve done nothing wrong.<br />I know that you are strong.<br /><br />You may have trouble talking,<br />But that doesn’t make you any different.<br />No one is the same,<br />And there should be no shame.<br /><br />Some people may be mean,<br />And it doesn’t make it right,<br />But on your face,<br />I can still see the light.<br /><br />When I hear your voice,<br />It makes me smile.<br />I would love to hear you talk to me<br />For a while.<br /><br />You may have trouble talking,<br />But that doesn’t mean a single thing,<br />Because you are everything<br />To me.<br /><br />Now I can see your strength.<br />I can’t even measure its length.<br />You know that you are amazing,<br />And you truly are<br />My star.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6447892187739221541.post-41587034815317444072011-10-13T11:26:00.020-04:002011-10-13T14:27:41.465-04:00Telling Anna's Story<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5v8OJGBBZtyyXZzr4DrU0EjZqML9r6S3rGveuBJ4TxeNVUBLVxJeesv1VrOIytesvo3n0FID71iChrnwDzuPLgJSoD5l3_UuVXpLJ8lwre_kIPI7n6_brL6fhrURimlSo20tP95B06o4/s1600/Anna-Daddy-Berries-Profile.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5663026451004246466" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5v8OJGBBZtyyXZzr4DrU0EjZqML9r6S3rGveuBJ4TxeNVUBLVxJeesv1VrOIytesvo3n0FID71iChrnwDzuPLgJSoD5l3_UuVXpLJ8lwre_kIPI7n6_brL6fhrURimlSo20tP95B06o4/s320/Anna-Daddy-Berries-Profile.jpg" style="cursor: hand; float: right; height: 241px; margin: 0px 0px 10px 10px; width: 320px;" /></a>By David Ozab (Writer and father of a daughter with Apraxia)<br />
<br />
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?<br />
<br />
It's the story of a girl in search of her voice. Her name is Anna, and she has Childhood Apraxia of Speech.<br />
<br />
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.<br />
<br />
"Help please, mommy."<br />
<br />
We turned to see a small boy struggling to climb up the ladder behind Anna. His mom leaned down and gave him a boost.<br />
<br />
"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.<br />
<br />
"He's a beautiful little boy," Julia said.<br />
<br />
"Thank you," his mom replied.<br />
<br />
"How old is he?"<br />
<br />
"Eighteen months."<br />
<br />
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.<br />
<br />
That's when we knew there was something wrong, but we didn't know what it was yet.<br />
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:<br />
<br />
C-A-T<br />
<br />
"Meeeow." She couldn't say "cat" yet but we knew what she meant.<br />
<br />
D-O-G<br />
<br />
"Rffff." A bark.<br />
<br />
P-I-G<br />
<br />
"Doh, doh, doh." Her approximation of an oink.<br />
<br />
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:<br />
<br />
"Awaem oobie ees."<br />
<br />
"What's that honey?" Julia asked.<br />
<br />
"Awaem oobie ees."<br />
<br />
"I have no idea," I said.<br />
<br />
She made the sign for eat, putting her hand up to her mouth.<br />
<br />
"Awaem oobie ees."<br />
<br />
"Eat," Julia said. "Eat what?"<br />
<br />
"Oobie."<br />
<br />
"Oobie?" I asked.<br />
<br />
"No," Anna replied. Her "no" was unmistakable. "No oobie, oobie."<br />
<br />
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.<br />
<br />
"It's something she wants to eat." Julia said.<br />
<br />
Anna smiled and nodded. "Oobie."<br />
<br />
"So it's food, two syllables?"<br />
<br />
"Great," I said. "We're playing charades with a two year old."<br />
<br />
"You're not helping.<br />
<br />
"Sorry."<br />
<br />
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.<br />
<br />
"Oo - bie ees?" Julia sounded out the words, grasping at each syllable as it passed over her lips.<br />
<br />
I joined her. "Oo - bie ees."<br />
<br />
Over and over we both said it. "Oo . . . bie . . . ees." Then it hit me.<br />
<br />
"Cookie please?"<br />
<br />
Anna smiled and nodded again. "Oobie ees." She sounded so happy.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Every child deserves a voice.<br />
<br />
<strong><u></u></strong><br />
<em><u>Biography</u>:</em> <em>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 (</em><a href="http://www.fatherhoodetc.com/" target="_blank"><em>http://www.fatherhoodetc.com/</em></a><em>). He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.</em><br />
<br />
<em><u>Links</u>:</em><br />
<em>David Ozab: Writer </em><a href="http://www.davidozab.com/" target="_blank"><em>http://www.davidozab.com/</em></a><em> Salem, Oregon<br />
Apraxia Walk: </em><a href="http://www.apraxia-kids.org/salemwalk/davidozab" target="_blank"><em>http://www.apraxia-kids.org/salemwalk/davidozab</em></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6447892187739221541.post-64089460481934322612011-09-28T09:13:00.000-04:002011-09-28T09:13:36.120-04:00Walking for Apraxia & Learning that THIS is OUR thing<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpy8FgaUPwhjjFls4FNQVmogSe_cWumbrtHYXoTEWPrx00MQEksIUBMzYDBtpmoyLS5Oy_70a2snrjZlvg5PW82i937-Xt3vf0wOtONZVmvfj5z07___pN5f2uW4E-6nMT5LqKtq8BSdQ/s1600/306836_10150331011064711_788609710_7944193_1546125063_n.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" kca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpy8FgaUPwhjjFls4FNQVmogSe_cWumbrtHYXoTEWPrx00MQEksIUBMzYDBtpmoyLS5Oy_70a2snrjZlvg5PW82i937-Xt3vf0wOtONZVmvfj5z07___pN5f2uW4E-6nMT5LqKtq8BSdQ/s320/306836_10150331011064711_788609710_7944193_1546125063_n.jpg" width="320" /></a></div><em>By Kari Weed (SLP & mom of daughter with apraxia)</em><br />
<br />
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.<br />
<br />
<br />
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:<br />
<br />
<strong>Experience #1</strong><br />
<br />
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!<br />
<br />
<strong>Experience #2</strong><br />
<br />
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.<br />
<br />
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!<br />
<br />
I have learned that yes there are walks for everything, but this is <u><strong>our</strong></u> 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 <u>will</u> be planning this walk again next year because this is <u>our</u> thing.<br />
<br />
Thank you everyone who supported us!<br />
<br />
<em>[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.]</em>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com1tag:blogger.com,1999:blog-6447892187739221541.post-42283534217013115202011-09-09T19:46:00.000-04:002011-09-09T19:46:41.164-04:00Triathlete Luke Farrell Takes on World and Speech Dyspraxia<em>Written by: Roy Elmer, Luke’s Grandfather </em> <br />
<em></em> <br />
<em>Please Note: Terminology used throughout this story, such as Speech Dyspraxia, is the same as Childhood Apraxia of Speech. </em> <br />
<em> <br />
</em><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq1EkscMydsqWGrFaXhfon80DyUKpeO1hmkgI8LOHkQpS6w9XgC5aBEZjPFipPdsbIeqZGHrtmf1XDHxHeZ7anW4dAcC9p5xNriaU4nbDhk_lFeNMYAPIxc4Gqm6gNiXWK8OLuAAQZISk/s1600/luke_1.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5646640943684367714" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq1EkscMydsqWGrFaXhfon80DyUKpeO1hmkgI8LOHkQpS6w9XgC5aBEZjPFipPdsbIeqZGHrtmf1XDHxHeZ7anW4dAcC9p5xNriaU4nbDhk_lFeNMYAPIxc4Gqm6gNiXWK8OLuAAQZISk/s320/luke_1.jpg" style="cursor: hand; float: right; height: 230px; margin: 0px 0px 10px 10px; width: 163px;" /></a>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. <br />
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<strong>LUKE’S EARLY LIFE—A ROUGH RIDE.</strong> <br />
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. <br />
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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. <br />
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<strong>A GLIMMER OF LIGHT.</strong> <br />
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. <br />
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<strong>PATHWAY FORWARD.</strong> <br />
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. <br />
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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. <br />
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<strong>SPORT—THE KEY TOWARDS NORMAL LIFE. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyc-d7ngC_YdPGv7GWL0wldTKHVTnmW-zhdxV_Sv688ajmboBnx5vG_pLpys-jsWYYiFWmaUdlHymO9DfNGb2uXTTJc3qrgHDASE0EPLXWs_W9zBIQm9H20D37Fn2NRxXBYdOhuFgFG3Y/s1600/luke_2.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5646641195393618546" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyc-d7ngC_YdPGv7GWL0wldTKHVTnmW-zhdxV_Sv688ajmboBnx5vG_pLpys-jsWYYiFWmaUdlHymO9DfNGb2uXTTJc3qrgHDASE0EPLXWs_W9zBIQm9H20D37Fn2NRxXBYdOhuFgFG3Y/s320/luke_2.jpg" style="cursor: hand; float: right; height: 255px; margin: 0px 0px 10px 10px; width: 175px;" /></a></strong> <br />
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. <br />
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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. <br />
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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. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXpneiGuMjHHlYP6eMLAECMjoBfd3BIeotiJJv5oqBcirNCIa4bDJLbCplUP9sifvCEOjH9spDZvfHiOhoMkImpSpJAdn_abaNj0FaJnP6fhojdGz4Pjepa1HKWGk9_1doFL45qeTwNck/s1600/luke_3.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5646642252749299298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXpneiGuMjHHlYP6eMLAECMjoBfd3BIeotiJJv5oqBcirNCIa4bDJLbCplUP9sifvCEOjH9spDZvfHiOhoMkImpSpJAdn_abaNj0FaJnP6fhojdGz4Pjepa1HKWGk9_1doFL45qeTwNck/s320/luke_3.jpg" style="cursor: hand; float: right; height: 338px; margin: 0px 0px 10px 10px; width: 127px;" /></a> <br />
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. <br />
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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. <br />
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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. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyZG53Re7CR7lP0W1r1r5IEvdsvXf4wGjWfMYiKHcGDuziozPMXTQlTMF78c-pAjbqsVABAFwa7_g7Ds-ZZpUTLsWvlb0QN1bp5Ir3LeATlo5llq9pVYnqDTDjiEkQPBRIXzM9eGUAWC8/s1600/luke_5.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5646644247147499730" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyZG53Re7CR7lP0W1r1r5IEvdsvXf4wGjWfMYiKHcGDuziozPMXTQlTMF78c-pAjbqsVABAFwa7_g7Ds-ZZpUTLsWvlb0QN1bp5Ir3LeATlo5llq9pVYnqDTDjiEkQPBRIXzM9eGUAWC8/s200/luke_5.jpg" style="cursor: hand; float: right; height: 237px; margin: 0px 0px 10px 10px; width: 189px;" /></a> <br />
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. <br />
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<strong>TIME TO MAKE A DECISION ON A FUTURE LIFE. </strong> <br />
<strong><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiy3495D3f4NnyTkJ9ortzAdSKgIz7dgqQEVomdhUfHKxKIpV7XhWjoN_wrlHkpzizxrKx_GLDJQhVBnoh1pALb2kp6oLUaLA_YnTnAD-nw9L20UaHfoTN6ON02Q5PiG-uzERHUfiALOQ/s1600/luke_6.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5646647015719095218" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiy3495D3f4NnyTkJ9ortzAdSKgIz7dgqQEVomdhUfHKxKIpV7XhWjoN_wrlHkpzizxrKx_GLDJQhVBnoh1pALb2kp6oLUaLA_YnTnAD-nw9L20UaHfoTN6ON02Q5PiG-uzERHUfiALOQ/s200/luke_6.jpg" style="cursor: hand; float: right; height: 200px; margin: 0px 0px 10px 10px; width: 165px;" /></a></strong>After Luke finishes school in late October 2011, he will begin life as a semi-professional triathlete <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjjFC5Mv2zw60UoH6ymiWQEVXrLt1FbmDDxNf_a4NimjhKLqiYExpFFG7wwjJyGoVCGd5RNVg1-RICVLv8IoCbN1Cmk49M7q0ZbqzJL3MFj0Nq0jRupXGtAxECGJBmiNKwhKO1xsThAXo/s1600/luke_6.jpg"></a>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.” <br />
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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. <br />
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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 challe<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOq6N4sXJoG3SfHm5_GUdl3vlRI5YQjQVwORxtwKeqgbRI_4fz1TthDt-Ljr5NENYDh2gaqKTtqZCRdynUC66xCfl78M-7Ix8hkHr0GWbvLcZ_4wTrR8fl_DnljjfRVHf5zdXAor28FvQ/s1600/luke_4.jpg"></a>nges. <br />
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<em>For more information go to Luke’s Website: <a href="http://www.lukefarrell.com.au/" target="_blank"><em>http://www.lukefarrell.com.au/</em></a> <br />
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E-mail: <a href="mailto:roy@lukefarrell.com.au">roy@lukefarrell.com.au</a> <br />
</em><em></em>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6447892187739221541.post-82684816339355233462011-08-01T11:49:00.007-04:002011-08-01T12:00:05.237-04:00Truth or Misleading? “Children with Apraxia of Speech Make Very Slow Progress”<span style="font-family: Arial, Helvetica, sans-serif;">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:</span><br />
<ul><li><span style="font-family: Arial, Helvetica, sans-serif;">Children with apraxia of speech often make <strong>slower</strong> progress <strong><u>than</u></strong> children with other types of speech sound disorders. (Note: <strong>slower than</strong> other types of disorders; <strong>not slow in and of itself</strong>)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">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, <strong>most likely</strong> have a phonological disorder and <strong>NOT CAS</strong>..</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">With appropriate goals, informed by detailed assessment – <strong>AND</strong> – appropriate, well executed speech therapy that incorporates principles of motor learning, children with apraxia of speech <strong>can be expected to make good, steady progress</strong> in therapy, <strong><u>especially</u></strong> those with age appropriate or near age appropriate cognitive and language skills.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Both parents and SLPs should not blindly accept that, “progress will be or is slow because the child has apraxia.”</span></li>
</ul><span style="font-family: Arial, Helvetica, sans-serif;">Discussion:<br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Speech progress may be very slow, even with appropriate planning and therapy, <strong>when other co-existing problems add to the challenges</strong>, 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.</span><br />
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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.) <span style="font-family: Arial, Helvetica, sans-serif;">If this progress does not occur for a child whose primary diagnosis is CAS, an SLP should consider the following questions:</span> </span><br />
<ul><li><span style="font-family: Arial, Helvetica, sans-serif;">Is the diagnosis correct?</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Are the goals and stimuli appropriate?</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Are there additional diagnoses that should be considered, in addition to CAS?</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">If there are other diagnoses, is one of them really the bigger challenge to the child’s speech production skills?</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Is the intensity of speech practice, both in therapy and at home, sufficient?</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">Is the frequency of direct speech intervention sufficient?</span></li>
</ul><span style="font-family: Arial, Helvetica, sans-serif;">Remember that although speech progress can be slower for children with apraxia than it is for children with other speech problems, <strong>there should be noticeable and ongoing progress</strong> 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.</span>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com0tag:blogger.com,1999:blog-6447892187739221541.post-80687399172955506082011-07-19T15:50:00.002-04:002011-07-19T15:53:24.227-04:00Interview with Dr. Aravind Namasivayam<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdUlhLRyiHPxMqnV-ByMawcXmLfkLXB0g-wkkef_y-5W841TIkfugZ1zO8fMKYU2B4BzuToWcUuBZ-05-RZwL5_7oP6iyXqnl98j-aQMNukdYScia_Buq-MmPqTENfxC9GVYA2Jtm5bcs/s1600/Aravind2009image.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdUlhLRyiHPxMqnV-ByMawcXmLfkLXB0g-wkkef_y-5W841TIkfugZ1zO8fMKYU2B4BzuToWcUuBZ-05-RZwL5_7oP6iyXqnl98j-aQMNukdYScia_Buq-MmPqTENfxC9GVYA2Jtm5bcs/s200/Aravind2009image.jpg" width="196" /></a></div><span style="font-family: "Calibri", "sans-serif"; font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US;">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.</span><br />
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<span style="font-family: "Calibri", "sans-serif"; font-size: 10pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US;"><strong>CASANA: Why do you feel this study is important?</strong></span><br />
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<strong>Dr. Namasivayam:</strong> 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:<br />
a) the magnitude of treatment effects, <br />
(b) the relationship between treatment intensity and outcome measures and <br />
(c) to identify the key factors that contribute to treatment effectiveness of motor speech treatment for this population. <br />
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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). <br />
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<strong>CASANA: In what ways do you anticipate the study being most successful?</strong><br />
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<strong>Dr. Namasivayam:</strong> 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. <br />
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<strong>CASANA: What are the biggest challenges you will face with this study?</strong><br />
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<strong>Dr. Namasivayam:</strong> 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.<br />
<br />
<strong>CASANA: When this study is successfully completed, what future research do you expect?</strong><br />
<br />
<strong>Dr. Namasivayam:</strong> 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. <br />
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<strong>CASANA: What are your thoughts on CASANA's Apraxia Treatment Grant Program?</strong><br />
<br />
<strong>Dr. Namasivayam:</strong> 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.<br />
<br />
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. <br />
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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”.Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com0tag:blogger.com,1999:blog-6447892187739221541.post-48421807446154171102011-07-01T08:24:00.001-04:002011-07-01T08:28:22.236-04:00Is the iPad Worth It?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfvD347GzdceFonn5dxwkYpO6zsRKAa8XXJqQtDI8nFqgfPbyJktrdW0DOpYWTqBQUYn4HPNWDGcNDrhCcGd6ejLHHUhX5aRdO0Nz63pWVo3kkaJD4PHE3UOK6t9T4RQXyn7SVd9jDGAM/s1600/ipad_child.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="211" i$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfvD347GzdceFonn5dxwkYpO6zsRKAa8XXJqQtDI8nFqgfPbyJktrdW0DOpYWTqBQUYn4HPNWDGcNDrhCcGd6ejLHHUhX5aRdO0Nz63pWVo3kkaJD4PHE3UOK6t9T4RQXyn7SVd9jDGAM/s320/ipad_child.jpg" width="320" /></a></div><span style="font-family: "Trebuchet MS", sans-serif;">By Kim Singleton, M.S., CCC-SLP<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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. <br />
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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!</span><br />
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<span style="font-family: Trebuchet MS;">[View Kim using an iPad in therapy for a child with apraxia of speech]</span><br />
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<i><span style="font-family: "Trebuchet MS", sans-serif;">[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 </span><a href="http://www.kimsingleton.com/"><span style="font-family: "Trebuchet MS", sans-serif;">http://www.kimsingleton.com</span></a><span style="font-family: "Trebuchet MS", sans-serif;">]</span></i>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com13Pittsburgh, PA, USA40.440624799999988 -79.99588640000001840.370625299999986 -80.11066390000002 40.510624299999989 -79.881108900000015tag:blogger.com,1999:blog-6447892187739221541.post-31931534331333194162011-05-31T11:33:00.006-04:002011-05-31T12:03:51.588-04:00What the Research Says: The Importance of Production Frequency in Therapy for Children with Apraxia of Speech<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicXZPtv35d4KbU6-pzn49Mr78TR2lzL_FNeSm_nGESoTdZUY8OyPj7EbMN9r2SGyxvmo3uGyo2jw7OwKFYVxQM9D4FCCwEIf3LELChCDdHf2AK6LlY9-a01HtJNCMzVik4GZEXrQkmMK0/s1600/MC900311788%255B1%255D.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 97px; height: 78px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicXZPtv35d4KbU6-pzn49Mr78TR2lzL_FNeSm_nGESoTdZUY8OyPj7EbMN9r2SGyxvmo3uGyo2jw7OwKFYVxQM9D4FCCwEIf3LELChCDdHf2AK6LlY9-a01HtJNCMzVik4GZEXrQkmMK0/s320/MC900311788%255B1%255D.jpg" alt="" id="BLOGGER_PHOTO_ID_5612911071215395138" border="0" /></a><br /><span style="font-size:100%;"><span style="font-family:arial;">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).<br /></span> <span style="font-family:arial;"><br />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.<br /></span> <span style="font-family:arial;"><br />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.</span> <span style="font-family:arial;">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.<br /></span> <span style="font-family:arial;"><br /><span style="font-weight: bold;">Results<br /></span></span> <span style="font-family:arial;"><br />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.<br /></span> <span style="font-family:arial;"><br />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.<br /></span> <span style="font-family:arial;"><br /><span style="font-weight: bold;">The Bottom Line<br /></span></span> <span style="font-family:arial;"><br />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:</span> </span><ul><li><span style="font-size:100%;"><span style="font-family:arial;">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.<br /><br /></span></span><span style="font-family:arial;"></span></li><li><span style="font-family:arial;">Therapy approaches that incorporate principles of motor learning may be key to progress for children with a primary diagnosis of apraxia of speech.<br /><br /></span><span style="font-family:arial;"></span></li><li><span style="font-family:arial;">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.</span> </li></ul><span style="font-size:100%;"> <span style="font-size:85%;"><span style="font-family:arial;">Source:</span></span> <span style="font-family:arial;"><span style="font-size:85%;">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.</span><br /><br /></span><span style="font-family:arial;"><span style="font-style: italic;">© 2011 by the Childhood Apraxia of Speech Association of North America (CASANA). All Rights Reserved.</span> </span></span>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com0tag:blogger.com,1999:blog-6447892187739221541.post-19620668448811493472011-01-04T08:58:00.002-05:002011-01-04T09:08:11.979-05:00In Your Silence<div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSrvOWOLn9Cerh2nGhY2nRGG_P-2OyHp4d-hxTxqsawBaLe8lYAzuHqqoYPwXtyDBNucXx7oIMV3K5RolbH1b88fSMHjQSGUX9sJQY2MvWBlvzsHL2iR4EPPrgldmloRgot9dg7oyrrjI/s1600/Eustice+04012011.JPG"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 240px; FLOAT: right; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5558330046248064034" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSrvOWOLn9Cerh2nGhY2nRGG_P-2OyHp4d-hxTxqsawBaLe8lYAzuHqqoYPwXtyDBNucXx7oIMV3K5RolbH1b88fSMHjQSGUX9sJQY2MvWBlvzsHL2iR4EPPrgldmloRgot9dg7oyrrjI/s320/Eustice+04012011.JPG" /></a><strong>In Your Silence</strong></div><br /><span style="font-family:arial;">In your silence I hear your fear,</span><br /><span style="font-family:arial;">Your need to have me always near,</span><br /><span style="font-family:arial;">The fear you won't be understood.</span><br /><span style="font-family:arial;">Speak my child - if only you could.</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;">Some people don't know, they say "She'll be alright!"</span><br /><span style="font-family:Arial;">They don't see the pain, the anguish and fright.</span><br /><span style="font-family:Arial;">You understand all that they say and infer,</span><br /><span style="font-family:Arial;">Yet you cannot respond - a pain you incur.</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;">My love for you is simply not enough,</span><br /><span style="font-family:Arial;">To get you through life, at times will be tough.</span><br /><span style="font-family:Arial;">But I will help you grow with all in me,</span><br /><span style="font-family:Arial;">You shall find your voice, this I guarantee.</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;">Your voice will be strong, your words so proud.</span><br /><span style="font-family:Arial;">You will one day stand tall and speak out loud.</span><br /><span style="font-family:Arial;">You won't fear anymore, not being understood.</span><br /><span style="font-family:Arial;">It is then that we'll know we did all that we could.</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;">So for now in your silence I hear your fear,</span><br /><span style="font-family:Arial;">Your need to have me always near.</span><br /><span style="font-family:Arial;">The fear you won't be understood,</span><br /><span style="font-family:Arial;">One day will be gone - it will be gone for good.</span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;font-size:85%;"><em>(posted with permission of author Sarah Grainer)</em></span><br /><span style="font-family:Arial;"></span><br /><span style="font-family:Arial;"></span>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com6tag:blogger.com,1999:blog-6447892187739221541.post-1292062747146545312010-05-07T07:56:00.007-04:002010-05-07T08:14:36.301-04:00What Causes Childhood Apraxia of Speech and Is It Preventable?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrdDsdJT4Vg_lvd2PlBkOZgLz65UjkBvosLNLVLtg-HohVUxhZFRRtSpDmkm8xl4gIKlOixUWaEF3nCxGrh5uHo8v2HFG2iJB6X2fx6xCXwS8x2WDjxlSzFNATEXcYq0YqXXH4TXZAuwk/s1600/sonogram.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 230px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrdDsdJT4Vg_lvd2PlBkOZgLz65UjkBvosLNLVLtg-HohVUxhZFRRtSpDmkm8xl4gIKlOixUWaEF3nCxGrh5uHo8v2HFG2iJB6X2fx6xCXwS8x2WDjxlSzFNATEXcYq0YqXXH4TXZAuwk/s320/sonogram.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5468497040075873954" /></a><p class="MsoNormal"><i><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:small;">From CASANA</span></span></i></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">First, it is important for parents to understand that there is most likely nothing that you did to “cause” your child’s speech disability.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">It is not about how much you talked to your child or whether or not you had them in daycare, for example.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">Your child does not have apraxia because you separated from your spouse or because you moved to a new city.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">The current knowledge that we have about Childhood Apraxia of Speech (CAS) is this.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">CAS occurs in the following 3 conditions:</span></p><p class="MsoNormal"></p><ul><li><b><span class="Apple-style-span" style="font-family:'trebuchet ms';">Neurological impairment</span></b><span class="Apple-style-span" style="font-family:'trebuchet ms';"> caused by infection, illness, or injury, before or after birth or a random abnormality or glitch in fetal development.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">This category includes children with positive findings on MRI’s of the brain.</span></li><li><b><span class="Apple-style-span" style="font-family:'trebuchet ms';">Complex Neurodevelopmental Disorders</span></b><span class="Apple-style-span" style="font-family:'trebuchet ms';"> – We know that CAS can occur as a secondary characteristic of other conditions such as genetic, metabolic, and/or mitochondrial disorders.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">In this category would be Childhood Apraxia of Speech that occurs with Autism, Fragile X, Galactosemia, some forms of Epilepsy, </span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';">and Chromosome translocations involving duplications and deletions.</span></span></li><li><span class="Apple-style-span"><b><span class="Apple-style-span" style="font-family:'trebuchet ms';">I</span></b><span class="Apple-style-span"><b><span class="Apple-style-span" style="font-family:'trebuchet ms';">diopathic Speech Disorder</span></b><span class="Apple-style-span" style="font-family:'trebuchet ms';"> (a disorder of “unknown” origin) – with this condition, we currently don’t know “why” the child may have CAS.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">Children do not have observable neurological abnormalities or easily observed neurodevelopmental conditions. </span></span></span></li></ul><p></p><p class="MsoNormal"><span><span><span class="Apple-style-span"><span class="Apple-style-span" style="font-family:'trebuchet ms';">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 </span><u><span class="Apple-style-span" style="font-family:'trebuchet ms';"><i>direct</i></span></u><span class="Apple-style-span" style="font-family:'trebuchet ms';"> relationship between complications of pregnancy or childbirth and a </span><u><span class="Apple-style-span" style="font-family:'trebuchet ms';"><i>specific</i></span></u><span class="Apple-style-span" style="font-family:'trebuchet ms';"> increase in risk for apraxia of speech.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">However, such a condition could also NOT result in CAS or even neurological injury.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">Some children are born just fine even though there was some complication during pregnancy or birth.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span></span></span></span></p><p class="MsoNormal"><span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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 <i>specifically</i> to CAS, are only speculations. </span></span></p><p class="MsoNormal"><span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">A child who is healthy is more fully capable of taking advantage of opportunities to learn.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">Helping your child be healthy and thus more “present” to the learning opportunities around them is one way parents can help.</span></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Most likely in the future we will learn that CAS is caused by multiple factors and conditions, not one.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span><span><span class="Apple-style-span" style="font-family:'trebuchet ms';"> </span></span><span class="Apple-style-span" style="font-family:'trebuchet ms';">Children who are able to maintain optimum health will most likely directly benefit the most from appropriate help.</span></p> <!--EndFragment-->Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com13tag:blogger.com,1999:blog-6447892187739221541.post-49328505852092980172010-02-25T16:58:00.004-05:002010-02-25T17:46:14.139-05:00Response to Op.Ed. on Environmental Toxins & Neurodevelopmental Disorders<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrmjIOHQ7mBe9a6n9SKlI2rchS9rIToHacFJOlD1awZs6wbQulFFIlAx72l6BliGS8IbU2IchyphenhyphenSOjhDA34d5bHRfgCJGItIAkhs3szKf2byi-wSlDBYr6FSnLeNWwaVQQ8DWxYx74ZBuc/s1600-h/images.jpeg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 140px; height: 93px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrmjIOHQ7mBe9a6n9SKlI2rchS9rIToHacFJOlD1awZs6wbQulFFIlAx72l6BliGS8IbU2IchyphenhyphenSOjhDA34d5bHRfgCJGItIAkhs3szKf2byi-wSlDBYr6FSnLeNWwaVQQ8DWxYx74ZBuc/s320/images.jpeg" border="0" alt="" id="BLOGGER_PHOTO_ID_5442316122950517906" /></a><br /><span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:13px;"><i>[Note: This blog article is in response to the February 24, 2010 New York Times Op. Ed by Nicholas Kristof titled, "<a href="http://www.nytimes.com/2010/02/25/opinion/25kristof.html?em">Do Toxins Cause Autism?"</a>]</i></span><div><span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; font-size:13px;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; font-size:13px;"><b>By Tesi Kohlenburg</b><br /></span></span><div><span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; font-size:13px;"><br /></span></span></div><div><span class="Apple-style-span" style=" border-collapse: collapse; font-family:arial, sans-serif;font-size:13px;">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.<br /><br />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:<br /><br />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.)<br /><br />See this link for more about obesogens <a href="http://www.newsweek.com/id/215179" target="_blank" style="color: rgb(17, 65, 112); ">http://www.newsweek.com/id/<wbr>215179</a><br /><br />2. Learn which are the most pesticide-contaminated kinds of fruits and veggies, and either don't buy them, or buy them organic.<br /><ul><li>( Berries, which are so good for us in many ways, are sadly among the worst offenders in terms of pesticide contamination.)</li></ul><br />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.<br /><br />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: <a href="http://www.youtube.com/watch?v=RE7OK9sMDvo" target="_blank" style="color: rgb(17, 65, 112); ">http://www.youtube.com/watch?<wbr>v=RE7OK9sMDvo</a><br /><br />For more resources, visit:<br />The Environmental Working Group at: <a href="http://www.ewg.org/home" target="_blank" style="color: rgb(17, 65, 112); ">http://www.ewg.org/home</a><br /><br />OR<br /><br />The Mount Sinai Children's Environmental Health Center (Dr. Landrigan's center) at:<br /><a href="http://tinyurl.com/c5xnx2" target="_blank" style="color: rgb(17, 65, 112); ">http://tinyurl.com/c5xnx2</a> ).<br /><br />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.<br /><br />With great concern and also hope that we can change,<br /><br />Tesi Kohlenburg</span></div><div><span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; font-size:13px;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:arial, sans-serif;font-size:100%;"><span class="Apple-style-span" style="border-collapse: collapse; font-size:13px;"><i>[Tesi Kohlenburg is a physician and the parents of a child with apraxia of speech, dyspraxia]</i></span></span></div></div>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com1tag:blogger.com,1999:blog-6447892187739221541.post-57468242658624551592010-02-21T09:07:00.004-05:002010-02-21T09:14:55.354-05:00Quiet<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizuRnK50IpKxaSfwf5xt-ih8x10_VyV_UBQJJEpyv5I18oipG83ioiViOu0PQOwF8IXBwAKF4QALT7EStQm3l8VWBSHQp1Xi2G4jiwNNLkJ3agLrHWq7ffG_Vb3WnXp-jo-rQzgraHxQ4/s1600-h/100_1107.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizuRnK50IpKxaSfwf5xt-ih8x10_VyV_UBQJJEpyv5I18oipG83ioiViOu0PQOwF8IXBwAKF4QALT7EStQm3l8VWBSHQp1Xi2G4jiwNNLkJ3agLrHWq7ffG_Vb3WnXp-jo-rQzgraHxQ4/s320/100_1107.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5440699669990179970" /></a><br /><div style="text-align: center;"><span class="Apple-style-span" style=" ;font-family:'trebuchet ms', serif;"><b>Quiet</b></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><i>By Pia Prenevost</i></span></div><div><br /></div><div><br /><div style="text-align: center;">S<span class="Apple-style-span" style="font-family:'trebuchet ms';">ometimes he is so quiet.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Frequently he is so quiet.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Word attempts are sporadic.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">I can never predict when</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">he might make a sound or word.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">He doesn't jabber or babble.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Not to himself, and not to us.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">At least, not often.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">He is quiet.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Some days I think he wants to communicate.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">To talk.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Other days I think he is happy being quiet.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Wordless.</span></div><span class="Apple-style-span" style=" color: rgb(255, 255, 204); line-height: 20px; font-family:'Trebuchet MS', Trebuchet, Verdana, sans-serif;font-size:11px;"><div align="center"><div align="center"><span class="Apple-style-span" style="color:#000000;"><br /></span></div><div align="center"><span class="Apple-style-span" style="color:#000000;"><br /></span></div></div></span></div>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com0tag:blogger.com,1999:blog-6447892187739221541.post-58994870329430629392010-02-18T07:10:00.001-05:002010-02-18T07:12:54.608-05:00Apraxia………..<span class="Apple-style-span" style="color: rgb(51, 51, 51); "><span class="Apple-style-span" style="line-height: 5px;"><i><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">by </span></span></i></span></span><span class="Apple-style-span" style="color: rgb(51, 51, 51); line-height: 15px; "><i><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">Michelle Genser-Jones</span></span></i><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;"><br /><br />The expressions in your face<br />Show the words you can not say<br />Not a fault, of yours nor I,<br />But of Apraxia,</span></span></span><div><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;color:#333333;"><span class="Apple-style-span" style="font-size: small; line-height: 6px;"><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); line-height: 15px; "><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">Unknown to most…. <br />It is not heard, nor seen, <br />But a Voice it takes</span></span></span><div><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;color:#333333;"><span class="Apple-style-span" style="font-size: small; line-height: 6px;"><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); line-height: 15px; "><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">Scared parents…cry…worry <br />While surrounded by others…<br />Who just can’t understand</span></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;color:#333333;"><span class="Apple-style-span" style="font-size: small; line-height: 6px;"><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); line-height: 15px; "><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">The fate, the destiny of their loved child <br />Seem unfounded through the endless wait…<br />With ears constantly ready for that first word<br />Joyful tears pour out when it’s finally heard</span></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;color:#333333;"><span class="Apple-style-span" style="font-size: small; line-height: 6px;"><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); line-height: 15px; "><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">Words…movements… Sounds, may be found<br />Only to be lost once more,<br />And re-found at a later date<br />Dreams only to remain are those shared</span></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;color:#333333;"><span class="Apple-style-span" style="font-size: small; line-height: 6px;"><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(51, 51, 51); line-height: 15px; "><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size: small;">Between child and parent<br />A bond always remains</span></span></span></div></div>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com0tag:blogger.com,1999:blog-6447892187739221541.post-11913317799768322592010-02-17T12:10:00.005-05:002016-09-07T19:13:27.903-04:00Is Your Nonverbal Child Safe on the School Bus?<div>
<span class="Apple-style-span" style="font-family: "trebuchet ms";"><span class="Apple-style-span" style="font-size: medium;">by Sharon Gretz, M.Ed.</span></span><br />
<span style="font-family: "trebuchet ms"; font-size: medium;"><br />[<i>April 14, 2013: Unfortunately, it keeps occurring. Today we learn of <a href="http://www.kare11.com/news/article/1021433/391/3-year-old-left-alone-on-school-bus-for-4-hours" target="_blank">3 year old Elliott</a> from Minnesota, who has childhood apraxia of speech, and never made it to school. His mom thought he was playing and learning but he never made it and when he did not arrive at home on the bus and she called the school, the school said he had not been there. He was found 4 hours later still strapped in the bus in the bus terminal. We are so grateful that Elliott is safe. Please read the article below and consider what you can do for your child or in your school district to make sure this doesn't happen!</i>]</span></div>
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<span class="Apple-style-span" style="font-family: "trebuchet ms" , serif;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: "trebuchet ms";"><span class="Apple-style-span" style="font-size: medium;">Two weeks ago we learned of a very disturbing story via the internet about a <a href="http://www.seattlepi.com/local/415074_bus05.html">four year old girl with childhood apraxia of speech who was left unattended</a> 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.</span></span></div>
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<span class="Apple-style-span" style="font-family: "trebuchet ms";"><span class="Apple-style-span" style="font-size: medium;">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 <a href="http://www.facebook.com/apraxiakids">CASANA facebook page</a> 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.</span></span></div>
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<span class="Apple-style-span" style="font-family: "trebuchet ms" , serif;"><span class="Apple-style-span" style="font-size: medium;"><br /></span></span></div>
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<span class="Apple-style-span" style="font-family: "trebuchet ms";"><span class="Apple-style-span" style="font-size: medium;">So the bottom line is this: What can parents to do best protect their child with limited intelligible speech?</span></span></div>
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<li><span class="Apple-style-span" style="font-family: "trebuchet ms" , serif; font-size: medium;">Make sure that your school district has bus safety procedures in writing and assure that you get a copy of the policy.</span></li>
<li><span class="Apple-style-span" style="font-family: "trebuchet ms" , serif; font-size: medium;">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.</span></li>
<li><span class="Apple-style-span" style="font-family: "trebuchet ms" , serif; font-size: medium;">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. A transportation plan would be a tremendous addition to the IEPs of children who are unintelligible or nonverbal.</span></li>
<li><span class="Apple-style-span" style="font-family: "trebuchet ms" , serif; font-size: medium;">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.</span></li>
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<span class="Apple-style-span" style="font-family: "trebuchet ms";"><span class="Apple-style-span" style="font-size: medium;">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. </span></span><br />
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<span class="Apple-style-span" style="font-family: "trebuchet ms";"><span class="Apple-style-span" style="font-size: medium;">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! For a guide designed for both parents and educators, please read <a href="https://doe.sd.gov/oess/documents/SPED_Transportation_Guide.pdf" target="_blank">An Overview of Special Education Transportation:A Primer for Parents and Educators</a>.</span></span></div>
Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com4tag:blogger.com,1999:blog-6447892187739221541.post-84595717570454667682010-01-28T11:11:00.005-05:002010-01-28T11:33:41.178-05:00Every Child Deserves A Voice<p><span style="font-family:arial;font-size:85%;">by <em><strong>Megan Steinke</strong> (originally on <a href="http://www.hippymom.com/">Hippymom.com</a>; posted with permission of the author)</em></span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;">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 <a href="http://www.apraxia-kids.org/">Apraxia Kids Network </a>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.</span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p align="center"><span style="font-family:arial;font-size:85%;"><strong>“Will my child ever speak normally?”</strong></span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;"><em>Tell me that you love me<br /></em></span><span style="font-family:arial;font-size:85%;"><em>Tell me that you’re thinking of me<br />Tell me all about the things you’re thinking<br />Tell me that you’re happy and you love it when we’re laughing<br />Tell me more, show me a sign.</em></span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;">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.</span></p><p><span style="font-family:arial;font-size:85%;">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.<br /></span></p>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com7tag:blogger.com,1999:blog-6447892187739221541.post-38118050718416499972009-11-01T15:33:00.009-05:002009-11-01T15:41:40.120-05:00Beautiful Girl<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiay4iHZqA-MTQUHvh3KRle5dYX-ZP-7cO-yhhPp5o2vw3b8NdH0DM1cxp7sNqGz-W6A-ptnZxD2gC7tqIp3He9cK1SyOp9wDtImkWgarffmqbNmdIUUBqhwyBAJkWk_ljCp0zagM37LZA/s1600-h/beautifulgirl.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiay4iHZqA-MTQUHvh3KRle5dYX-ZP-7cO-yhhPp5o2vw3b8NdH0DM1cxp7sNqGz-W6A-ptnZxD2gC7tqIp3He9cK1SyOp9wDtImkWgarffmqbNmdIUUBqhwyBAJkWk_ljCp0zagM37LZA/s320/beautifulgirl.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5399236668322222018" /></a><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">By Isobel Allen</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">You’re light has always shined so bright</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Even when you lost your words</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">And we started this fight</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">You’re light shined bright</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Happiness is infectious coming</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">From such a special child</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">I struggle to be more like you</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Not letting the worry build</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">They will not misunderstand,</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Or get it all wrong</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Oh but sometimes they do</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Does it hurt me more than you?</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">I see the words in your eyes</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">What you want to say with all your might</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">To join with the other kids</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">And still your light shines bright</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">How hard you have worked, what a feat</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">For such a young life</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">We will keep on going</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Educating all we meet</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Someday you will tell us</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">All your dreams and desires</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">This I have no doubt</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">The Joy you give we could not live without</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><br /></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">I’ll always be by your side</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">My heart weighs heavy still as</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">You’re light shines bright</span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';">Our beautiful girl</span></div><!--StartFragment--> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;"><br /></span></p>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com6tag:blogger.com,1999:blog-6447892187739221541.post-6146635093869393982009-10-20T18:59:00.009-04:002009-10-21T07:01:10.916-04:00Small Seeds Watered with Tears<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir8LgmWt6CFUumxdNwYh-FoDbo9_ANZJ3vUg8u1Hli0btaULuTCwEOKRnGKhwSgvC9Bh99EfztPt0HjNMkFpeTrldKmTGE40K2lJbg_7wH_bjoeyTPgwbJN9MhrHiAtzPyT28CU0XD7MQ/s1600-h/Sue_and_sean.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir8LgmWt6CFUumxdNwYh-FoDbo9_ANZJ3vUg8u1Hli0btaULuTCwEOKRnGKhwSgvC9Bh99EfztPt0HjNMkFpeTrldKmTGE40K2lJbg_7wH_bjoeyTPgwbJN9MhrHiAtzPyT28CU0XD7MQ/s320/Sue_and_sean.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5394848520169730610" /></a><br /><!--StartFragment--> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;"><i><span class="Apple-style-span" style="font-size:small;">[Written and delivered at the 2009 Pittsburgh Walk for Children with Apraxia of Speech]</span></i></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:medium;">by Sue Freiburger</span></span></p> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;"><span class="Apple-style-span" style="font-size:medium;"></span></span></p><span class="Apple-style-span" style="font-family:'trebuchet ms', serif;"><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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.</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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.</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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?</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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...</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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.</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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. </p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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. </p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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.</p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri; min-height: 17.0px"><br /></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 14.0px Calibri">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.</p></span><p></p>Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com6tag:blogger.com,1999:blog-6447892187739221541.post-52511581752710859372009-09-30T19:28:00.004-04:002009-09-30T19:34:18.700-04:00Mississippi River Apraxia Challenge (MAC Ride) and Tom Welge Solidify Choice of Speech Language Pathology Careers<!--StartFragment--> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><i>by Ellen Groh & Lindsay Croegart</i></span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">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. </span></p><p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">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. </span></p> <p class="MsoNormal"><o:p><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span></o:p></p> <p class="MsoNormal"><o:p><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span></o:p></p> <p class="MsoNormal"><o:p><span class="Apple-style-span" style="font-family:'trebuchet ms';">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.</span></o:p></p> <p class="MsoNormal"><o:p><span class="Apple-style-span" style="font-family:'trebuchet ms';">Ellen Groh and Lindsay Croegart</span></o:p></p> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Augustana College, Rock Island, IL</span></p> <p class="MsoNormal"><span class="Apple-style-span" style="font-family:'trebuchet ms';">Communication Sciences and Disorders Classes of 2010 & 2012</span></p> <!--EndFragment-->Apraxia-KIDShttp://www.blogger.com/profile/17484018071197731716noreply@blogger.com0