Monthly Archives: December 2011

When we first started on this journey, I spent a lot of time trying to find CAS experts.  At first I needed to find someone to formally diagnose E.  Then I needed somewhat that could actually provide speech therapy for her.  In the early days, the therapist we found was an hour away from us.  Add an hour of therapy as well and we’re talking a three hour commitment twice a week.  I wasn’t working at the time, had one other child in preschool, and was pregnant.  This commitment was stressful but doable.  Fast forward nearly two years later and this is no way I could do this now.  I have two other children besides E, am working part time, my first grader has activities like soccer and Girl Scouts, and frankly I need my sanity.

My mindset has changed over the last two years.  Rather than always trying to find CAS experts to treat E, I’m trying to make CAS experts of the local therapists treating her.  Currently, she sees a school-based speech therapist three times a week and we pay for an in-home speech therapist twice a week.  The private in-home speech therapist has always been more willing to listen because, frankly, we’re paying her.  She does what we want.  However, I learned over the summer how to get the school district and school-based speech therapist to learn more about CAS and I want to share with you how I did this because you might find it useful in your own situation.

I find it important to remember that the Position Statement and Technical Report on CAS was only published in 2007.  SLP’s who finished their schooling before this time may have only covered CAS during one lecture of a motor-based speech disorders class if at all.  There was certainly no unifying curriculum for professors to follow.  Experts in CAS were experts because they had treated a large number of children with CAS not because they had taken multiple courses in the subject.

More and more training sessions and conferences about how to treat CAS have increased drastically since this time, thanks in large part to CASANA.  However, it is important to note that the post-graduate training sessions cost money and many not be available in your immediate area.  School districts are always short on cash, particularly in the current economic environment, and often don’t have money to send their speech therapists for continuing education.  It then may fall upon the individual speech therapist to seek out this training at their own expense.

Keeping in mind this environment in the school system, this is what I did:

• At E’s first IEP, I brought in a copy of the ASHA technical report and highlighted the portions that stated the need for individual therapy three to five times a week.  The District agreed to give her two fifteen minutes sessions of individual therapy.  This was far less than we wanted but considering their first offer was no individual therapy we decided to start with it and try to educate them on the need for more.
• We reconvened E’s IEP meeting six months later when it was woefully apparent that she was not only not progressing but was actually regressing.  I brought in my excerpts from experts citing the need for individual therapy three to five times a week.  The District agreed to double her individual therapy – four fifteen minute sessions weekly.  Sixty minutes total was still less than she needed but we were moving in the right direction.
• At E’s annual IEP, she did not meet all of her goals.  (Part of this was not the SLP’s fault as the team had written goals that were far too difficult for E.  My husband and I knew she would not meet them and told the District so but they did not change them.  In the end, this was to out advantage anyway.)  Here we stalled in our working relationship with the District and so I embarked on a letter writing and information providing campaign this summer.
• We attended the 2011 CASANA Conference and shared with E’s SLP all that we had learned.
• I wrote a letter encouraging the District to seek further CAS training for their SLP’s and gave them some dates of upcoming workshops and online training that would be offered.
• We bought E an iPad, purchased the Speech-EZ Apraxia Apps for it, and offered the use of the iPad for E’s speech therapist.
• I printed out every single article from CASANA’s research library, neatly organized them in a 3-inch binder, and gave it to the District asking for it to be placed in E’s cum file so that it would travel with her all through school.  (I’m pretty sure my child has the largest cum file in the District now.)

For a long time, it seemed like all of this was falling on deaf ears but then slowly things began to happen.  In August, the self-training session for SLP’s in the District covered Childhood Apraxia of Speech for the first time ever.  In October, the District agreed to increase E’s individual speech therapy to three thirty minute sessions weekly.  Then last week, the District sent the two SLP’s working with E to a Childhood Apraxia of Speech workshop taught by Margaret Fish.  E’s two SLP’s are now responsible for presenting all that they learned to all of the District’s SLP’s at the next self-training session for SLP’s in the District in January.

I’m not trying to toot my own horn here, but this change is solely because of me and my information campaign.  Prior to this summer, the District had never trained any of their SLP’s in how to treat CAS even though E is not the only child in the District with this dignosis.  Now they will have spent both of their in-house District-wide training sessions on CAS and even sent the SLP’s working with E to be trained by an expert.  Parent advocacy can work!

No longer are we constantly on the look  out for SLP’s experienced in treating CAS because we are making them right here in our own backyard.  This will not only help E but also all the other current and future children in the District with CAS.

I  know that if I was able to do this then you can too!  If you find yourself in a similiar position, start that information campaign now.  It can work wonders.