Relieved About Ben’s Apraxia Therapy

Ben enjoying some April sun

Today has been a happy day. I start a new job next week so I decided to leave my last job last Friday to enjoy Spring Break at home with the family (unpaid of course). After a long day in the yard, I should be getting ahead in my online MBA class, but I can’t help thinking about how happy I am about Ben’s upcoming therapy plan.

It’s been almost five years since the day Holly emailed me in Iraq in August of 2006 to tell me that she was 100% positive our son Ben had Apraxia. While we’ve had glimmers of hope in his treatment, right now is really the first time I’ve felt good about Ben’s overall treatment team, therapy hours, and prognosis! We were very scared at the beginning of the year that Ben was not getting the right therapy by the right people and he would soon be too old to receive a majority of the benefits of recognized Apraxia speech therapy techniques (which should have begun for him at two years old but only began about two years ago). We were almost to the point of moving to Stafford when I got the call about a government job right here in Charlottesville. Not wanting to commute an hour and a half, we decided to try one more time to find a qualified private therapist to oversee Ben’s therapy.

I’d say we got lucky, but all I could really think is that we didn’t try hard enough when we moved here. After just two phone calls, I ended up speaking with Christine Evans of Evans Family Speech and Hearing, LLC. Based in Richmond, Christine meets clients in Charlottesville twice a week near Pantops and has experience treating Apraxic children. We quickly got a consultation scheduled and the very next week. Christine confirmed her theory during an full evaluation that Ben’s errors had become very consistent and could greatly benefit from the Hodson Approach. On top of that, she was able and willing to attend the IEP meeting for Ben at Ruckersville Elementary School last week!

This was not the only great news for us. In our search for Christine and realizing we would be staying locally, I began asking more questions of our school speech pathologist. Ms. G is a new SLP this year and just graduated from JMU last year (for her Masters). While I never doubted she was a good therapist, I was under the impression from my first conversation with her that she did not know much about Apraxia or how to treat Apraxia. In our most recent talks, it turns out she had been doing the things I was looking for all along. She was using the Kaufman Speech Praxis Treatment Kits for Children. She was using cuing and prompting techniques. Most importantly, she was producing results. We didn’t quite realize this until we spoke with Christine more as well as our January visit to St. Rita School for the Deaf in Cincinnati, home of the Sign N’ Say school for Apraxic children. Sign N’ Say confirmed that Ben was age appropriate and would compare with their late 1st grade students who have dedicated Apraxia SLPs and even use sign language to supplement their communication skills.

The final piece of the puzzle was the IEP meeting. For those that do not have a special needs child (of any degree), the IEP is the Individualized Education Plan that forms a contract between the school district and our son to provide specific, appropriate treatment in the least restrictive environment. Since moving to Greene County, I do not have one bad thing to say about the school board, Ruckersville Elementary staff, or the process. They have always been responsive and willing to take the next step. The problem has been the same issue faced by many parents of Apraxic children: the appropriate therapy for Apraxia is not always well known and treatment is not consistent throughout the educational system. Part of this revolves around the simple fact that not all Apraxic children have the same issues, but it is also because many educators and therapists are not on the same page when it comes to how Apraxia affects learning and how it should be treated. That is why I volunteered to assist the Cherab Foundation; I wanted to help change that.

Our IEP meeting was a great success. Holly and I formulated a list of our concerns based on hours of research and consultation. The director of Special Education for Greene County attended the meeting (I invited him to attend earlier in the month) and I believe his presence really helped as well. We had a great discussion about Ben’s capabilities and even worked to move him to the main stream classroom for the full day minus his one of one speech therapy and reducing occupational therapy sessions. We’ve uncovered a lot of new information this year and the school was really willing to incorporate that for the next school year. One thing I’m very happy about is the inclusion of a ‘total communication approach’ that will incorporate low tech and high tech communication aides such as a letter strip (so Ben can point to the letter a word starts with when somebody can’t understand him), WordQ to help predict words and help with spelling and reading, and other options to be explored. On top of that, we were able to connect our private speech therapist with the school therapist so that they can work off of each other and reinforce each other. I can’t be happier about that! I also want to send one more thank you to Christine Evans for coming to the IEP meeting and also for the hour long private session she held at our house afterwards!

With all that Holly and I learned through this process, we really want to share with other parents that may be in the same situation. Look for more postings about the topic. I’m also considering a more comprehensive article for use on the Cherab Foundation website (after thorough review by the board of advisors of course) and possibly submitting the story to Albemarle Family (I spoke with them about this possibility last year).

I close with a small summary of Ben’s upcoming therapy sessions:

Ruckersville Elementary School:

Speech Therapy: One-on-one sessions and in-class support for six 20 minute sessions totaling 1 hour and 20 minutes a week

Occupational Therapy: 30 minutes weekly focusing on pencil grip and proper handling of eating utensils

Private Therapy:

Evans Family Speech and Hearing, LLC: 30 minutes weekly. May move to two sessions if necessary.

Happy Horse Hippo: 30 to 45 minutes weekly to focus on physical therapy and core muscle development while incorporating some speech therapy activities while riding a horse (hippotherapy). This work with Ann Tuzson PT, PhD, is not only fun for Ben, but I really think he’s gained confidence and some definite throwing and catching ability! Sessions are held at Hidden Creek Farm in Ruckersville, VA

Dietary Supplementation:

ProEFA – Essential Fatty Acids – 2000mg daily (two pills in the morning)

Nutriiveda – created as a dietary shake, this powder has been shown to give great improvements to children with Apraxia as described by numerous parents at the Pursuit of Research website. We try to get this to Ben daily, but he fluctuates on his willingness to drink the shake. It goes in spurts.

Considerations: we try to stay fairly dairy free (one cup of yogurt will give Ben a runny nose for days and the same with most other dairy as well) but we’re considering trying a gluten-free diet as well. Thoughts?