Oral Motor Therapy

Warning: this might be boring and it's very long! However, I promised a few people I would do a post about the workshop that we attended last weekend and the evaluation that Ian had. I can't begin to tell about it without explaining the amazing circumstances surrounding it. On Christmas Eve, we always get together with my dad's family and it's rather chaotic, with all the kids running around busting a pinata, games, gifts, tacos, etc. In the midst of all that, I had a few very rare minutes to talk with my cousin-in-law, Kyla, who has also been blessed with a special needs child. We talked about PT, OT, IEP's and eventually got around to speech therapy. She told me about a lady in Tuscon, AZ, named Sara Rosenfeld-Johnson who is an Oral Motor Therapy specialist and that they had been able to get an appointment to have her evaluate their son when she was here in March to do a training workshop for speech pathologists. I came home and googled her name and was most impressed with her 36 years of research and work in the field as well as the results she has had over the years. 3 days later, Ian had a video feeding study which revealed that he was aspirating everything he eats and the docs at Riley wanted to put a feeding tube in that very day. We weren't ready for that, so we came home and started researching and calling doctors to see if we had any alternative. On a whim, I e-mailed Sara and asked if it's possible to teach a child like Ian (through therapy) to eat safely with the hope of having the g-tube removed someday. She actually returned my e-mail and gave me a time to call her at home, which I of course, did. Everything she said made so much sense and although she didn't have any spots left for another eval, she made one for Ian. Fast forward to last Friday and Saturday: Tom and I were able to attend the workshop which was pretty intensive and a bit over our heads, but we learned soooo much about oral motor therapy. At the end of the second day, we took Sara back to her hotel and she did a 2 hour eval with Ian. It came as no surprise to us that his mouth/jaw are very assymetrical and he has very little jaw strength, almost no lip rounding and no oral airflow. So, we now have a 7 page intensive therapy plan that we will do as many times a day as we possibly can. It's a long road and realistically, we know that it may or may not work, but we feel strongly that we have to give him this chance. We also know that our God is "able to do far more abundantly than all we could ask or think" for His purpose and His glory!

While we were attending the workshop, we discovered that Ian was one of only 5 children in Indiana that were evaluated by Sara and that the only reason she was here to do the workshop was because she and her husband were taking their RV cross country from AZ to Rhode Island and agreed to stop along the way for some trainings. (This woman travels all over the world, training speech professionals the techniques that she has developed.) The timing of Kyla mentioning this type of therapy, and then Ian's feeding study and then, Sara coming to IN and agreeing to see Ian is all just incredible. We stand in awe of our great God!

Now, you might wonder what we did with Ian for those 2, very long days. That is an excellent question and one I will save for another post.