Sharing the gift of TalkTools with those living on Roatan, Honduras

Posted by Deborah Grauzam on

Kerry Tichi, MS CCC/SLP received a donation from TalkTools a few months ago to use with children and young adults with special needs during her trip to Roatan, Honduras. She writes about her experience and the impact it made on this population.

"It is with much privilege and gratitude that I have been able to share the gift of TalkTools with those living on Roatan, one of the Bay Islands of Honduras. Certified with TalkTools as a Level II Speech/Language Pathologist, I spent one week assessing and putting a basic treatment plan in place, for students who attend CATTLEYA, a small school for children and young adults with special needs. The plan, collaborating with TalkTools President, Luke Blessinger, was to arrive with a suitcase full of TalkTools material, do a brief evaluation on each student, implement a program plan for those students in need of Oral Placement Therapy, and train teachers and parents on the basics of TalkTools and the specifics for each child. 

Having lived on Roatan for three years, back in 2014, where my focus was on teaching English to an impoverished community, I had only briefly met a few parents and children with disabilities. For cultural and economical reasons, girls often do not receive as much education as boys in Honduras. As you might imagine, those with handicaps receive even less. Less respect, less dignity, less opportunities…less life. Thankfully, a strong, dedicated group of parents of children with disabilities there, has created more. More awareness, more opportunities, more dignity, more respect, more life.

  

CATTLEYA is an established NGO on Roatan, Honduras whose mission is to advocate for those with disabilities on the Bay Islands of Honduras. It is associated with the Honduran National Federation of Parents of People with Disabilities (FENAPAPEDISH) and is managed by its dedicated group of volunteer parents of children and young adults with disabilities. The goal of Cattleya is to reach every child, providing guidance and resources, to help achieve their full intellectual capability and integration as a functioning member of society.

TalkTools | CattleyaCATTLEYA is named in honor of a young girl, Mia Cattleya, born with Down Syndrome who sadly, passed away many years ago due to heart complications. It is also the name of a beautiful orchid, representing life and possibility. It has grown from a small group of concerned mothers in 2010. It operates CEDICA, (Centro Educativo de Desarillo Inclusivo CATTLEYA), a small school for those with disabilities. Currently, the school serves approximately 20 children and young adults ranging in age from 3 to 22 years.

Initially, all students were assessed, ranging in diagnoses from Down Syndrome, Cerebral Palsy, West Syndrome, Autism, Developmental delay to undiagnosed. Additionally, another 10 children were assessed, who heard about my being on island via Facebook, television announcement, and/or word of mouth. By week's end, a TalkTools program plan was put in place for more than half of the children. All of the teachers, a few parents, and a retired SLP on island were trained in proper positioning, the components of standard speech production, the how and why of the chewing, straw, and horn hierarchies, and the criteria needed to advance to the next level. While it was a lot of information given over a little bit of time, we will continue to “talk” via email and video to provide ongoing education. Additionally, a follow-up trip will take place in three months time.

  

While I knew in my heart I could be of service, never did I imagine to what great extent!  With TalkTools help, and assistance of others interested, together we can make a lasting impact on this community. As this outreach grows, paired with trainings in typical speech/language development and intervention strategies, more children on island will be identified and reached. Using our skills and talents, offered in a culturally relevant way, within a locally driven, extremely receptive organization, can greatly assist those, too often marginalized in a 3rd world country like Honduras. Thank you TalkTools for partnering in this venture!"

-Kerry Tichi, MS CCC/SLP

  

Over the past 2+ years, CEDICA has grown from a two-room space within a clinic to a free standing beautifully renovated building. While they have come far, there is still much work to be done! Current needs include raising funds to:

1-Hire a Special Education Teacher/Administrator to oversee and guide program development.

2-Sponsor children/ young adults with disabilities so that they can afford to attend this school.

3-Provide ongoing Continuing Education for teachers and parents to increase knowledge.

4-Provide ongoing Evaluation and assessment of students and programs

5-Advocate for individuals with disabilities and increase awareness on the Bay Islands.

6-Improve the website to increase exposure, facilitating sustainability.

7-Begin planning for implementation of a vocational program.

In US dollars CATTLEYA's current monthly budget based on planned projections according to the above is $4623.70 and their actual capacity based on 2016 income generated by sponsorship, donations, board activities plus parent contributions is $3063.79.  CATTLEYA is short $1559.91 and is basically the reason they have not been able to have a FT Administrator/Special Education teacher, are lacking in specialized training, and have a limited capacity to reach more children and families.

If this resonates with you, contact CATTLEYA to make a donation today

Kerry can be reached via comments below. 

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TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius

Posted by Deborah Grauzam on

Maureen Dykinga, MS, CCC-SLP, reached out to TalkTools last year to request a donation for SPOON Foundation's upcoming trip to Mauritius. The goal of this trip was to train the local caregivers to use good feeding techniques with children living in shelters. That mission was close to our heart as we strive to teach and spread good feeding techniques throughout the world too! If this resonates with you too, feel free to make a donation here.

TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius

Here Maureen writes about her trip and the organization's mission in general.

"SPOON is the only organization worldwide focused on the issue of malnutrition for children living outside of permanent family care. SPOON has worked in 12 countries since 2007, using tools specifically designed to accommodate the unique nutrition and feeding needs of children impacted by disability and/or institutional care. In many areas where SPOON works around the globe, there is no access to specialized feeding equipment such as maroon spoons and flexi-cups. For children who have complex feeding challenges, these items are essential for promoting safety during mealtimes. In addition to providing training and education on feeding, we at SPOON provide the equipment and model its use, with the goal that we will decrease the number of children fed with their heads tipped back, and those fed bite sizes too large to be managed safely. These solutions have been proven to drastically reduce malnutrition and life-threatening feeding practices in institutions, foster care, and community settings."   

"In November, SPOON traveled to Mauritius to train caregivers of children living outside of permanent family care on proper feeding techniques for children with disabilities. In the Mauritius shelters we visited, we saw children with disabilities being offered drinks with their head tipped back, causing dangers of aspiration and choking. Children were also being fed large bit sizes by scraping the food off of the spoon into their mouths. We utilized TalkTools' donated flexi-cups to train caregivers on offering children with disabilities drinks without tipping the child’s head back, decreasing the risk for aspiration while drinking. We also trained caregivers to use donated TalkTools' maroon spoons, which allowed the children to take in smaller bite sizes and, with assistance and the maroon spoon, begin to develop lip closure skills. These critical feeding tools, paired with our training, will increase these children’s feeding skills, leading to increased safety, efficiency, and skill building during feeding. As these feeding practices improve, we hope to see improved health in the children as well as promoting dignity and a better quality of life."

TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius

TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius

TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius

TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius


TalkTools Sponsors SPOON's Feeding Therapy Work in Mauritius

Here's Maureen Dykinga, MS, CCC-SLP's bio from the SPOON Foundation website: "Maureen is a pediatric speech-language pathologist with a background in improving the lives of those with feeding, communication, and cognitive difficulties. She has devoted the majority of her career to the birth to three population, with a special focus on supporting medically fragile individuals and their caregivers. Maureen spent the past 13 years as a business owner and entrepreneur, running a small private practice in Tucson, Arizona. She used her collaborative efforts both professionally and philanthropically to develop and promote systems that improve quality of life for this special population. Maureen has brought her passion for advocating for underserved populations to the Pacific Northwest and along with her husband and furry family of pets, is developing a newfound love of rain!"

Maureen can be reached via comments below.

 

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Success Story | Colter and Vanessa

Posted by Deborah Grauzam on

In April of 2015, I received an e-mail about a little boy with Down syndrome named Colter. His mother was desperately seeking help…he couldn’t chew his food and she was at her wits end trying to figure out how to teach him.

Even though this is “speech therapy,” his actual speech was not an issue at this point…yes there were delays but if a child can’t eat that is priority #1. Plus, in the back of my mind I knew that if we targeted his feeding goals his verbal speech would start to develop as well.

I love feeding therapy! When we meet goals, it means we are getting nutrition and hydration to little ones and it positively impacts the whole family. Many people take for granted the ease that there is in getting a baby or toddler to eat meals and snacks throughout the day. However there are many families out there that experience a battle EVERY TIME, EVERY DAY they try to feed a child. There has got to be few things more stressful to a parent than a child not being able to eat or being an aspiration risk. Colter was a mix of both of those.

Colter was 18 months old and swallowed almost every solid he put in his mouth but without chewing. He yearned to eat but couldn’t get the motor plan down to do so. He couldn’t move his tongue side to side (also known as lateralizing) so if food was placed in the front of his mouth he would suckled it and then swallow. What is frightening about a child doing this is that if it happens frequently they actually lose their choking reflex. We had our work cut out for us.

I educated his mother on how to place meltable solids on the side of his lateral molars so he had a better chance at chewing it and keeping it there. For practice, we used the TalkTools Pre-Feeding Hierarchy, as described in Lori Overland & Robyn Merkel-Walsh’s book A Sensory Motor Approach to Feeding. This eliminated the risk associated with choking on food and focused solely on practicing chewing and tongue lateralization. This paired with a pre-feeding program began to work wonders on Colter. We used a Z-Vibe with pre-feeding exercises from Lori Overland’s TalkTools course Feeding Therapy: A Sensory-Motor Approach before we started any feeding therapy.

Colter’s mom was diligent about keeping up with this program, which was a major factor in how far he came! Within 6 months Colter was eating much more solid food and the best part was he was being safe while doing it!

A few months later, his verbal speech exploded. He always had a higher receptive ability than expressive and thanks to getting his feeding on track, his verbal expression blossomed. When I explained to his mother that his talking was most likely a direct result of oral motor therapy, she said “I know you said that him talking more could be a possibility when we first started therapy but I didn’t think it could happen!”

Currently Colter is 2 years, 9 months old and is eating everything. One of his first words was “eat”! He loves beef jerky, hummus with veggies, fruit snacks, watermelon, and grapes. He is beginning to speak in 2 word utterances and has great intelligibility when doing so.

TalkTools | Success Story - Colter & Vanessa

The next frontier we are on is drinking from a straw. Colter still uses a bottle and isn’t thrilled with learning to drink from anything other than that! Now our focus has shifted to drinking from the Honey Bear. We had to put the beloved Honey Bear “away” for a month or so as he was so opposed to it. Then during therapy one day, I started to do some lip rounding pre-feeding exercises with Colter and he was successful, so we brought it out on a whim. All of the sudden, it clicked for him! While we are still working on him getting used to it, his family and I are thrilled with how far he has come!

What I love about Colter’s story is that he is a textbook case about what TalkTools can do for kids. In Lori Overland and Robyn Merkel-Walsh’s book A Sensory Motor Approach to Feeding, it is discussed that you cannot separate speech and feeding. While it may not be a 1:1 ratio, speech and feeding have a very close connection. Colter is proof of that!

~ Vanessa Anderson-Smith

TalkTools | Vanessa Anderson-SmithVanessa Anderson-Smith is a Speech-Language Pathologist born and raised in South Dakota. She received her Bachelor’s Degree at Augustana University and Master’s Degree from The University of South Dakota. In 2013 she began Anderson-Smith Speech Therapy, LLC. Her practice focuses on assessment and treatment of motor-based speech and feeding disorders among children and adults. Vanessa lives in Canton, South Dakota with her extremely supportive husband, Ryan.

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Cerebral Palsy treated with Oral Placement Therapy in Norway

Posted by Deborah Grauzam on

LineVildeIn a recent article published in the Norwegian publication Cerebral Palsy Magazine,  TalkTools® Instructor Line Avers, MS, SLP is featured along with one of her long date client diagnosed with Cerebral Palsy. The main focus of the article is TalkTools Therapy and the huge gains that this little girl has made. TalkTools® Instructor Renee Roy Hill, MS, CCC-SLP also evaluated her way back, and Line Avers has followed that therapy plan. Her name is Vilde, and her picture makes the front cover of the magazine!

Line Avers has been Vilde's therapist since she was two and a half years old. Vidle's parents heard of Line Avers in conversations with other parents in a Cerebral Palsy Association. They recommend to seek speech therapy services early, as many children with Cerebral Palsy have speech and feeding issues. "Vilde still faces challenges related to eating and speaking, but the problems have been reduced after several years of regular oral-motor therapy," says Linn, Vilde's mom.

"Vilde therapyWe started the work on strengthening the functional movements by strengthening the muscles in the mouth that we use when we eat and speak. We took small steps, and it was important to find a balance between pushing slightly while respecting boundaries," says Avers. "When Vilde became accustomed to the therapy, I introduced new exercises. Jaw strength was the focus. A stronger jaw provides more support, and more support means more words. This is how Oral Placement Therapy works."


"After a few months we could already see improvement. Vilde was better at chew, was willing to try several types of food and produced more different sounds," says Linn, Vilde's mom.

TalkTools Therapy involves a range of tools for exercising your jaw, tongue and sensory system. Vilde has used bean bags (small pillows with different textures), straws, horns, bite tubes and vibrator with toothettes.

Daily monitoring and training is important. Vilde's parents have been present from the beginning during training to learn the method and exercises. Every day after school, the family spends 15-20 minutes going through the latest exercises. "It may sound like a lot, but it really takes very little time. It has become part of our daily routine. It is easy, and the program is very affordable," says Linn.

bean bagsIn addition to working directly with children, staff in schools and kindergartens, and parents, Line Avers's center also organizes live workshops. Parents, grandparents and professionals who want to become familiar with TalkTools Therapy can participate. The goal is that after two days of training, you should be able to initiate the procedure.

Vilde's family hopes that her story can inform other families about an important service that they may have no knowledge of and maybe even inspire them to start training.

Line Kristiansen Avers, MS, SLP is a Speech-Language Pathologist who has over 12 years of experience specializing in topics within Apraxia, Alternative and Augmentative Communication (AAC), and Oral Placement Therapy. Line teaches classes in Apraxia and AAC at the University of Oslo, lectures at numerous seminars within Norway, and is a member of the TalkTools® speakers bureau. Line heads a private oral-motor, speech and language clinic in Norway, BARNAS språksenter. She has an M.S. from Penn State University and was a Fulbright Scholar.

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Success Story | Beth and Heather

Posted by Deborah Grauzam on

In celebration of 30 years of successful therapy, we asked you to share your success stories with us at the last ASHA Convention and the response was amazing! Here are Beth Marafiote and Heather Peterson's inspiring testimonials.

“My name is Beth Marafiote and I live in Parker, Colorado. I discovered TalkTools and Sara Rosenfeld-Johnson many many years ago after going to many different other people’s workshops on how to help oral motor. They helped a little bit but not much. I discovered her. She revolutionized the way I do therapy. I feel like her products have made me the best therapist. Well, that’s a little exaggeration, but so much better. I am forever ever grateful because I view these products as the miracle of speech therapy.” Beth Marafiote, MA, CCC-SLP

“Hi, my name is Heather. TalkTools has completely changed my life. I think we all start in the same place, where we are gathering information. When I was newer into my career, I found Sara Rosenfeld-Johnson’s first course and I took a video course (the “Level 1” course) and it was really after that that I decided: “Wow, look at all this information that I just learned! I have never heard this before, this totally makes sense to me. I think I’m going to try it!” And so I had a child - actually, it was not a child, it was a teenager - walk in and he had Dandy-Walker Syndrome, he wore a bandana, and he drooled constantly. His mother came in and said: “You know, I would really like to work on this drooling. I want his mouth to close, I want his tongue to be in his mouth, and I really want him to try to use his mouth for speech.” I just remember, I think the weekend before I have been to that course and I just thought: “Ok, I’m going to try this. I’m going to use the Bite Tubes, and I’m going to just order that,” because it was the one thing that I grasped: the jaw was so important. So we used those on him and that mom was amazing. We used those on him for about six months and we were able to close his jaw and his lips, and there was no more saliva. We took off that bandana. For so many of us, we know that perception is so important. Not only had we changed his oral function, but we changed the perception of everybody looking at him and that is really important. That is just one awesome example of what TalkTools has done. If you think about a fourteen-year-old, he was not spontaneously developing, that was something that the mom really did. So that’s a really true testimony to TalkTools. Since then, it has opened up my eyes and I started using it and I really have changed my practice. I predominantly now work with children with Down Syndrome and I watch it every day. Parents comment every day that this is changing the lives and the faces and the structures and the articulation and feeding development of the children. I have really my career I have to thank Sara Rosenfeld-Johnson for creating and I am keeping on with the oral motor movement even when it wasn’t such a hot topic, because clinically - man - it is just so incredible. So thank you TalkTools, thank you Sara, and thank you to everybody in the oral motor community who has come before.” Heather Peterson, MS, CCC-SLP

We are incredibly appreciative of those who shared their stories, let us know if you have a story to tell.

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