Over 3 years ago I began working with Andrew who has a diagnosis of cerebral palsy. Anyone that knows Andrew will tell you that his personality and smile lights up every room that he is in. Each time I arrive for therapy I am greeted with squeals of laughter and a wave from the hardest working boy I know! While therapy has targeted both speech and feeding over the years, I want to highlight the progress he has made with his expressive communication. READ MORE

When my son, Noah, was 2 years old, his speech therapist suspected he might have apraxia of speech. Noah had no intelligible language, almost no approximations and very poor oral motor skills. He did not have the motor coordination necessary to blow a bubble or produce any sound on a horn. He had weakened muscles throughout his mouth. His therapist gave us a horn (horn #1 from the TalkTools horn hierarchy) and told us to practice with Noah every day. She also referred us to TalkTools to purchase the rest of the horn hierarchy and the chewy tube set. We practiced horn #1 every single day for three months before Noah was able to produce his first sound. The amount of pride we felt at this tangible accomplishment was indescribable! After master horn #1, he quickly mastered the others in less than a year. He found great success with the horn hierarchy. Some were harder than others (specifically horn #7), but he worked so hard to master each of them. He loved the different noises the horns made- especially the train and airplane! Each horn taught him specific ways to move his mouth to produce noises and increased his oral motor coordination. We are still using chewy tubes- he still struggles with his left side.

  

After we graduated from the horn hierarchy, his speech therapist began using the bilabial shapes and tactile tubes to help teach him perfect his sounds. He is a very visual and tactile learner, so having these physical prompts really helped him find success. The bilabial shapes actually helped teach him his second and third words when he was 3 - "momma" and "more."  Noah is now 4.5. He is still affected by his apraxia every day. But now, he has so many words. He has sentences! He is able to communicate his needs and wants. We are so grateful to TalkTools for creating these amazing products so kids like Noah can find their words. Thank you so much!

-Mary

Noah's family is active in the Tampa Bay area and is busy every year fundraising for Apraxia Walks benefiting CASANA (Childhood Apraxia of Speech Association of North America).

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3 years ago I was seeing a little boy named Kamdyn who had just turned 2 a couple months prior, through our state’s early intervention program. I was presented with some general background info such as scores, goals of the family, and his limited verbal productions. Also, he had 18 documented ear infections! All signs pointed to your typical late talking boy who had to endure ear infection after ear infection. When he turned 3 he began seeing his local school district for therapy services. I said my goodbyes to this sweet little boy and wished him and his family luck on their journey ahead.

Fast forward 14 months later. I had immersed myself into motor speech and feeding therapy and had opened my own private practice. In May of 2016 I got an e-mail from Kamdyn’s mom, Ashley, who told me he was recently diagnosed with severe Childhood Apraxia of Speech (CAS). Childhood Apraxia of Speech?! I know CAS is very difficult to diagnose before 3 years of age but I was dumbfounded and to be honest, disappointed in my clinical skills for not having any inclination. I worked with this little boy every week for over a year and I never once thought CAS was on the radar. After all, he had 18 ear infections!

There was no time for beating myself up, only time to get Kam into therapy and see what we can do. I had never worked with a kiddo with a sole diagnosis of severe CAS but I knew with all of the trainings I had taken in the last year I could bring something to the table.

Kamdyn came to his initial evaluation reluctantly. This kid had been through assessment after assessment and now he had to do more speech testing. My speech evaluation was different from others he had done though. I examined his mouth and assessed motor responses of his tongue, jaw, and lips. I found asymmetry in his jaw strength and stability, poor lip rounding, and poor lip closure for his /m/, /p/, and/b/ sounds. In addition, I found that he had a high palate, a moderate tongue tie, and a reverse swallow. While Kamdyn had no history of feeding difficulty or being a picky eater, he was chewing and manipulating the food in his mouth in a very unorganized way.

We started the TalkTools Straw Hierarchy (straw #2), the chewy tube hierarchy, Bite Blocks (the ultimate jaw exercise!), the Horn Hierarchy, and bubble blowing. Gum chewing and use of the slow feed technique were addressed as well. We also began to target the reverse swallow.

I explained to his mom that while this looks much different than traditional speech therapy it was essential to for him to have a good oral motor foundation. If we didn’t get his jaw in a good and stable position, he would inevitably have much more difficulty moving his tongue and lips when he speaks. It’s no different than a pyramid of cheerleaders. Without the stable base (the strong cheerleaders planted firmly on the ground), the cheerleader on the top of the pyramid won’t be able to do stunts. The cheerleader on the top is our tongue, the huge muscle that can demonstrate the finest motor movements that can be a difference between Kamdyn calling himself “Tam” instead of “Kam”.

Because of Kamdyn’s CAS and reverse swallow, he wasn’t using his muscles in the optimal way we want for speech. That is where the weakness came in. It was mild, but it was there. During speech he was in a constant state of retraction because he had to clench is jaw so much to provide stability in order for his tongue to have more movement.

I saw Kamdyn 2 x a week between last May and August, in addition to his traditional speech therapy. Our sessions consisted of approximately 30 minutes of oral placement exercises and 15 minutes of speech drills. We did not do 30 minutes of all OPT exercises, then 15 minutes of speech as that is not an effective way to generalize motor patterns. What I did was chain each OPT exercises with a functional speech sound/drill. For example, Kamdyn had a great amount of difficulty rounding his lips so we used the following sequence to target the /o/ “oooo” and /w/ speech sounds: Sensory motor warm up with a Z-Vibe involving cheek activation, fish lip pops, straw drinking, then mass practice of lip rounding sounds in CV or CVCV formation. The key is linking the OPT exercises from sensory, to feeding, and finally to speech.

Within just 2 months, his family noticed a marked improvement in not only his speech, but his confidence while speaking. The first video posted is of Kamdyn during his evaluation, the second video just 2 months after introducing an OPT based program. The difference in his ability to move his lips, cheeks, and jaw is astonishing!

It is an honor to be a part of Kamdyn’s therapy team and be able to see firsthand that OPT is not just for children with feeding difficulties. Kamdyn is living proof that speech is motor and if you pair sensory, feeding, and speech the sky is the limit!

~ Vanessa Anderson-Smith

Vanessa 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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My name is Jenna Kobara and I am an occupational therapist (OT) who recently returned from my third trip to Ankamu, Ghana where I had the opportunity to work with children with disabilities. I was part of a multi-disciplinary team led by my mentor, Bonnie Nakasuji, an OT, who recently received an international service award from the American Occupational Therapy Association (AOTA) for her work. Since 2003, Bonnie has led a multi-disciplinary team comprised of therapists (occupational, physical, speech-language pathologist), OT students, teachers, health professionals (e.g., optometrist), as well as other volunteers to work with children with physical and mental disabilities at the Mephibosheth Training Center (MTC). MTC is a boarding school founded in 2005 by co-directors Pastor Joseph Jehu-Appiah and his wife, Andrea Jehu-Appiah, who is a physical therapist from the United States. The goal of the school is to teach children with physical and/or mental challenges to become productive members of society by providing them with education and training in academia, activities of daily living, and vocational skills. MTC serves over 70 students ranging from 7 to 25 years old who present with a variety of suspected diagnoses including cerebral palsy, post-polio syndrome, Down syndrome, and autism spectrum disorder. While at MTC our team provides rehabilitative treatment for students and educational support to MTC staff, in addition to assessments, consults, and equipment repair for adults and children with disabilities within the surrounding communities. 

 

Each year, our team brings donations of shoes and clothing, basic school supplies, medical supplies, and therapy equipment such as orthotics, adaptive feeding utensils, walkers, and wheelchairs. This year we were fortunate enough to have received a generous donation from TalkTools that included bite tubes, Honey Bears, flex straws, straw kits, and horn kits to use with the students at MTC. Prior to the trip our therapists were invited to participate in a free TalkTools’ Three-Part Treatment Plan to Oral Placement Therapy course to prepare for using the treatment materials. Melissa Sun, an SLP, joined our team this year for the first time and took the lead with introducing the TalkTools equipment to the students and community families. Many of the children at MTC have limited mobility, poor control, and reduced strength in their upper limbs and head/neck. As a result, drinking water is a difficult task and often requires peers to assist with drinking from an open cup. This practice exemplifies community support and kindness, but leaves children dependent on another person and subject to unsafe swallowing and aspiration. To help remedy the situation, our team used honey bears and flex-straws in existing cups to promote independence and safety when accessing drinking water. In addition, some of the children presented with poor intelligibility and saliva management, specifically as a result of poor lip closure and decreased oral awareness. The horn and straw kits were motivational and helpful tools for increasing oral awareness and introducing concepts related to oral placement for speech production. Within a week, students demonstrated improved response to verbal prompts and visual cues to demonstrate increased lip closure and rounding in speech production tasks. Even the MTC students who presented with functional speech production also joined in the fun, especially with the horns. Things got a little loud at times, but their laughter and smiles were worth the noise.

 

In our community assessments, we found that some of the children presented with oral motor weakness impacting both feeding and speech production. Many of these children did not appropriately use their teeth to chew, and instead mashed foods using their tongues or waited until the food dissolved. To help these children, we provided education and instruction to their families using bite-tubes, foods wrapped in tulle, and placement techniques, such as a slow feed, to demonstrate appropriate placement of foods on back molars for mastication. We also taught families how to provide oral sensory input using a Nuk brush to increase oral awareness and manage tactile sensitivity. Although our two-week trip was not enough time to see significant results across all of the children we worked with, we feel that the resources and materials that TalkTools provided helped us to introduce skills and techniques that will serve as a strong foundation to supporting the speech production and feeding skills for future trips to come. Our team will be going back next year and we will continue to work on these same goals! Thank you TalkTools for your generosity and support!

-Jenna Kobara

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.

CATTLEYA 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.