Imagine being a child that completely comprehends everything, is academically equal to most of the students in his 1st grade class, and as social as his daddy, but when he attempts to make his mouth sound out a letter, his brain doesn’t know how to shape his mouth correctly.
Dr Lori Roth, MA, CCC-SLP, defines Apraxia (also known as Dyspraxia) as:
Verbal apraxia is a neurological disorder where children are unable to coordinate and/or initiate movement of their articulators (jaw, lips and tongue) for the production of speech sounds. Oral motor apraxia is a disorder where the coordination of the articulators is hampered for non-speech (raspberries, blowing whistles) or vegetative (eating, chewing, swallowing) skills. Both coordination/initiation disorders are neurologically based.
DIAGNOSIS
While this is not an uncommon disorder in children, finding a speech therapist that is knowledgeable about the condition and how to treat it seems to be. Through the help of the Cherab Foundation and the Late Talker Book by Lisa Geng, Dr. Marilyn Agin, and Malcolm Nicholl, my wife diagnosed Ben as having Apraxia at the age of 2, while I was ten months into an Army deployment to Baghdad, Iraq. Being in the Army, we spent the next two years trying to navigate the Tricare insurance process to get the proper evaluations and therapy for Ben at an early age; early intervention is highly recommended for children with Apraxia. We had no such luck. We often heard, “We need to evaluate him a little bit longer before making that diagnosis.” In the meantime, we could not secure a consistent therapist and never received the diagnosis.
It wasn’t until I got out of the Army and we moved to Charlottesville that we met our first knowledgeable therapist. Actually, she was a developmental pediatrician at UVA. Within five minutes she looked at me and asked me if I had ever heard of Apraxia. This diagnosis was important because studies show that Apraxic children need “frequent and intense” individual therapy with specialized techniques such as the Prompt technique, Beckman Oral Motor Protocol, and the Kaufman Kit for the Treatment of Childhood Apraxia of Speech. We were so relieved to know that the Kluge Children’s Rehabilitation Center at UVA knew about Apraxia and we thought our problem was solved!
THERAPY AT UVA AND RUCKERSVILLE ELEMENTARY
Ben’s follow up therapy at Kluge proved to be not as encouraging. He rotated therapists often and he received very little of the recommended Apraxia treatments. When he began kindergarten at Ruckersville Elementary, we decided we would just fight for as much care as possible on his IEP. We were not impressed at all with the therapy he was receiving through the school, but we had the most wonderful speech language pathologist (SLP) come to our home, free of charge, once a week to work with Ben. She used oral motor therapy and proven Apraxia therapy and we saw a great improvement. But, unfortunately, she could not continue to come. We returned to UVA for the summer, but witnessed the same problems.
We also started supplemental therapy with Dr Ann Tuzson, PT, PhD, of Happy Horse Hippo. He did this once a week at Hidden Creek Farm in Ruckersville (see picture to the right). We’d like to continue this therapy as it helps with his core muscles, but also helps him to focus on the therapy while also working on his balance. I didn’t mention it before, but Ben also suffers from Limb Apraxia, which used to be called, “Clumsy Child Syndrome.” It affects his gross and fine motor skills, or high muscle tone and low muscle tone.
When school started this year, I was very disheartened to see that all of the people I had spoke with at Ruckersville Elementary about Ben’s care seemed to be gone. The Principal, Vice-Principal, and Speech Therapist had all moved on or retired. In place of the speech therapist was a brand new SLP who admitted that her only experience with Apraxia was a video she watched once in school. My wife and I were very skeptical but decided to give the process a chance.
Now it’s five months later and we think Ben is regressing a bit. We’ve made the decision that this can’t go on any longer. He needs to get the appropriate care now. I do not want to sound ungreatful to the work his SLP has been doing. She seems like a wonderful and caring therapist, but she has not received the proper training to treat Apraxia.
NEXT STEPS
We want to move to a school district that has an SLP experienced with Apraxia. We also NEED a private SLP that is PROMPT and Beckman certified and experienced with the Kaufman Kit. I’ve called Albermarle County Schools and spoken with a school SLP, the Special Education Coordinator, and indirectly with the head SLP. I’ve been assured that all of the SLPs have heard of Apraxia and that the county will do what they have to give the appropriate treatment, but none of the therapists have the certifications. Better than Greene County, but still not great news. We’ve been told by multiple SLPs that nobody at Albermarle Therapy Center or UVA is certified in Prompt or Beckman. This is not boding well for the area.
ALTERNATIVES
Three weeks ago, we made a drastic move and decided that we may try to get our son enrolled in one of the two schools in the country with dedicated Apraxia programs. One is in Southern Mississippi and the other is in Cincinnati, Ohio. We chose Cincinnati and drove our son to the St. Rita School for the Deaf’s Sign N’ Say school for an evaluation. This school would be wonderful because they incorporate sign language into the curriculum to provide an alternate communcation method. They also incorporate speech therapy, both individual and group, into the class curriculum so he is not being pulled away from learning to do therapy. Right now he misses approximately an hour a day of class for speech and occupational therapy. After the evaluation, we received good news that Ben is not very far behind in his therapy, but also the recommendation that Ben would be a great fit at their school and could really benefit from their program. The downsides: $29,000 a year tuition, no job, no house, no friends in the area.
Staying in Charlottesville would require finding the school therapist that at least knows about Apraxia and then a private SLP that is fully qualified to treat Apraxia. If the school therapist can’t be found, home schooling is an option, but only if the private therapist can dedicate the extra team each week. Benefits of staying… we love Charlottesville and I have a job here!
Other alternatives? Moving to a place that has what we need. We considered Stafford County as my sister lives there and is friends with a few SLPs that say the schools are well equipped. We even found a private SLP that was fully qualified, but it turns out she moved to Richmond, is having a baby, and probably wouldn’t be able to dedicate much time right now to him. There are a few good therapy places in Northern VA as well. Disadvantages: I just quit my job in McLean to move back to Charlottesville; my wife really doesn’t want to live in the big city or that close to DC; houses are REALLY expensive in Fairfax County.
CAN ANYBODY HELP?
Staying in Charlottesville is our best and favorite option right now. Otherwise, we would need to find that location that coincides with a job for me and place Holly doesn’t hate. Now I don’t talk about my work on here very much, but I will state that my line of work is only available in certain places, usually places with a military or large government presence. But, if by the off chance we are missing something, we’d love your help!
Just a quick follow up: we are consulting with a speech therapist in Charlottesville next week that may be able to help! We may not have to move after all!!!
Hey Lewis! My husband found your blog by searching ‘apraxia’ and ‘charlottesville’. We live at Lake Monticello in Fluvanna Co. and have a 3.5 yr old daughter with cerebral palsy secondary to Schizencephaly who likely has apraxia as well. She is currently in special ed preschool in our district and does receive school speech but I’m not convinced of the treatment’s quality. Before preschool, she did get speech through EI but again, that therapy was a joke, for a lack of better terms. She recently began private speech at Kluge and that so far seems to me making a slight difference though changes/progress seem so sublte that it’s hard to tell. I was curious who you think you found who may be able to help your son. We are in the same fight as your family and we understand the need to do all that you can for your child… would love to hear from you.
Hi —
I found your blog via googling and wanted to comment on St. Rita’s in Cincinnati. I have a son who just turned 2 at the end of March. Though not officially diagnosed as apraxic, he was diagnosed with an expressive language delay at 20 months and has been receiving private ST 1x per week, and we are also involved in the early intervention program in our county. We had our son assessed at St. Rita’s, and he was accepted! He will start in August 2011. The good news with St. Rita’s is that you can apply for financial assistance! Please contact Greg Ernst there is you are still interested in obtaining more info. I am very hopeful this program will help our son as well. Please email me at noebb1@hotmail.com if you have questions!
Thank you for the comment Brandi! We were actually really encouraged by our visit to St. Rita’s as they basically told us our son was right on track and age appropriate. He decided to stay put in Virginia and luckily found a local therapist to take him on! Best of luck to you… St. Rita’s was amazing!
Hi Mo! I meant to reply to you long ago; my apologies. I wrote a follow up Relieved About Ben’s Apraxia Therapy telling how this story panned out for us this Spring. We’re going through Evans Family Speech and Hearing, LLC. Christine Evans works out of both Richmond and C’ville and has therapy hours at Pantops on Tuesdays and Thursdays. We used Kluge for two summers but were not pleased at how often he had a different therapist. We wanted more consistency.