Tagged "Down syndrome"


Success Story: Emma & Heather

Posted by Admin TalkTools on

Heather A. Vukelich, MS, CCC-SLP, TalkTools Level 4 Therapist specialized in Down Syndrome, has recorded her adult client Emma along her progression in speech clarity, from 18 to 24. Heather sees clients in her private practice Happy Kids Therapy in Danville, CA. Here is what she writes about Emma.

"Emma is a very intelligent and social young woman with Down syndrome. At the initiation of therapy Emma had severe jaw weakness and extremely limited tongue movement. She worked very hard overcoming both. As you can see Emma's speech clarity increased greatly through her dedication to the program. Other parents often comment on Emma's clarity. They are often very surprised when they learn she started the program when she was 18. Emma is a true testimony to the TalkTools program and her intrinsic motivation.  Emma is an incredible young woman who I am proud to call a good friend."

- Heather Vukelich 

TalkTools | Emma & Heather TalkTools | Emma & Heather

Video 1: Emma's first therapy session at 18

Video 2: Post jaw work / lip rounding at 19

Video 3: /t/ and vowels post tongue work at 23

Video 4: Generalizing /t, d, n, l/ & counting at 24

Video 5: Celebrating her success and working on /sh/ and /t/ at 24

Video 6: Emma's last therapy session at 24

Congrats Emma on your perseverance and clear speech!


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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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Success Story | Colter and Vanessa

Posted by Admin TalkTools 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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Grace Kauk's Oral Placement Therapy work in Bulgaria

Posted by Deborah Grauzam on

Grace Kauk writes about her Oral Placement Therapy work in Bulgaria.

"I met Steve and Tanja Pankratz over email in February of 2015. Three weeks later, I was making plans to move to Bulgaria.

The Pankratz' are missionaries in Bulgaria through SEND International. Their 8-year-old son, Jaden, has Down Syndrome. When he was born, God began to show them how great the needs were among the Bulgarian special needs community, and over the years, special needs has become the focus of their work here. Along with some like-minded people, they created a new foundation, called Nova Stupke (meaning "New Steps") to be a platform for serving special needs individuals and their families. The work is in its infancy, but so far includes family summer camps, a home visitation program, a school assistance program, and a special needs day center. I came to Bulgaria primarily to be Jaden's teacher, but also to help with the larger ministry in any way I can. I arrived in November of 2015, and if God is willing, I will stay until summer of 2017.

As I prepared to travel, SMILE on Down syndrome, our local parent network, offered to help outfit me with supplies. As I thought about what tools I most wanted to bring with me for Jaden, OPT supplies were at the top of my list. My sister has Down syndrome, and while there are many therapies that helped her over years, the value of the interventions created by Sara Rosenfeld-Johnson simply cannot be overstated. I wanted that value for Jaden. I knew I could make my own flashcards and math manipulatives - but I didn't want to skimp on oral placement tools. I prayed. SMILE contacted TalkTools on my behalf. And we asked for a donation.

TalkTools helped me figure out what tools we would need for Jaden and sent an abundance of supplies not only for him, but enough for us to make OPT a significant part of what Nova Stupke offers families. One of the happiest moments of my life was opening that box!

TalkTools | Grace Kauk in Bulgaria

So now I have been here six months. I work with Jaden about 4 hours each day, and we are best friends. As part of my work with him, I am using the Jaw Grading Bite Blocks, the Horn and Straw Hierarchies, and the Bubble Blowing Hierarchy. Jaden is making progress in all of those. He has gone from being unable to blow a bubble to blowing them a distance of 3 feet. Recently, we saw a huge increase in Jaden's expressive language, especially his sentence length. OPT is not the only reason for that, but I know that the bubbles were an important piece for him.

In addition to my work with Jaden, I've had the privilege of introducing the tools to the Nova Stupke team-members and explaining when they are indicated and how they are used. Besides Jaden, there are currently two other children who are receiving some OPT. I have met dozens more who would benefit.

At my request, TalkTools included A Three-Part Treatment Plan for Oral Placement Therapy video-on-demand and some other training materials. I am especially grateful for that. When you are a parent or a layperson (like myself) trying to help a child without access to professional support, it means the world to have the chance to educate yourself. I personally refer to those materials over and over, and have encouraged other workers to do the same.

It is my hope that as we grow our program this summer and fall, we will be able to serve many more children with this therapy. I am so grateful to TalkTools for resourcing us."

Before Grace worked with Jaden, he had tongue placement issues, particularly when drinking and when saying /s/ and /z/. He is also hyperactive and has a quite short attention span. She is videotaping Jaden's siblings modeling the exercises correctly and with good behavior to help him see what is expected of him. Discrete video modeling is very effective for Jaden and he regularly gets four 15 minutes sessions of it daily.

Jaden's mom, Tanja, says: "Thank you for the privilege of being recipients of the TalkTools oral motor resources. We are extremely grateful for your generosity, not only to our son but to the children we are working with through our "New Steps" Foundation. As Grace mentioned, we are in the beginning stages but pray that we can help make a difference in these children's lives. The need is great and we have focused this last year on training our staff and experimenting with a variety of different services, including school assistance, Portage Early Intervention Program, and just recently were able to open a modular day center for special needs children. We are trying to assess where the greatest needs are and where to focus our efforts, which we will define this summer after evaluating these last 8 months. Grace graciously did a training seminar on TalkTools Therapy for our staff. It is now available for them to use and Grace has offered to consult them along the way. As our staff gets confident and comfortable in using these tools, they will be extremely helpful in their work with special needs children. Thank you from the bottom of our hearts."

TalkTools | Grace Kauk in Bulgaria   TalkTools | Grace Kauk in Bulgaria

Grace Kauk's trip is entirely funded by donations. The goal of her trip is to empower therapists and parents in Bulgaria to help children with special needs, and Jaden in particular. Because Bulgaria doesn't have good resources for special needs children, Jaden's various developmental needs are evaluated through video appointments with neurodevelopmentalists in the US. Grace is the "hands on the ground" responsible for implementing his therapy assignments. Grace says about Bulgaria: "Children with special needs are typically not admitted to schools. Families truly have little to no help figuring out their children's developmental needs. Special needs families who chose to raise rather than institutionalize their children have an uphill battle. If schools do not accept their special needs children, the family is in danger of impoverishment because of the child's needs. In order for them to be financially solvent, we anticipate setting up a sponsorship program for scholarships for the kids."

Nove Stupke also recently implemented a home visitation program to best answer Bulgaria families' needs. Portage trainers from Russia and England have trained Nova Stupke's staff. Portage is a highly family centered organization, in line with Bulgaria families' needs. Grace says: "We help the parents set developmental goals that will make life easier in their families. Sometimes it is surprising what the parents' priority is, and it may not be what the therapist would have chosen, but it is what matters to them. Then we guide them with what they can do to work toward those goals, and the family is accountable to do those activities."

Grace can be reached via comments below.

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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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