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!
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.”
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.