Posts Tagged by 2011 CASANA Conference
|December 3, 2011||Posted by Laura under 2011 CASANA Conference, Apraxia Awareness, Special Education|
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.
|July 14, 2011||Posted by Laura under 2011 CASANA Conference|
The second session we attended was given by Lynn Carahaly, MA, CCC-SLP. It was entitled Auditory Processing Deficits in Children with CAS: Effects on Speech Production and Literacy. Ms. Carahaly is the owner and director of Foundations Developmental House, LLC located in Chandler, Arizona, which houses an Apraxia clinic for the greater Phoenix area. She specializes in treating Childhood Apraxia of Speech as well as Auditory Processing Disorders. She is also the developer of The Speech-EZ® Apraxia Program.
When we registered for the 2011 CASANA Conference, I signed us up for this session because I wonder whether or not E also has an Auditory Processing problem. Many times I have to repeat what I am saying to her in order to get her to understand me. I can’t give her more than one direction at a time. For instance, I need to say, “Go put your pajamas on.” After she comes back, I then tell her, “Go to the bathroom.” Then it’s, “Brush your teeth.” If I told her all three directions at the same time, she would be lost and not be able to complete them even though she receptively knows what I am saying.
Auditory Processing is different from hearing. A child may have perfect hearing but still have problems processing auditory information. Basically they have problems listening to and processing the information that the ears hear. Background noise (like that in a noisy classroom) can particularly cause problems for them. There are a variety of ways to treat Auditory Processing Disorder (which I will write about in another post) and help children better their skills.
E also appears to have some mild hearing loss (which is different from Auditory Processing deficits). When she was born, she failed the initial hearing test at birth but then passed it when given it a second time. We had her hearing tested in December 2009 at the John Tracy Clinic. She was EXTREMELY uncooperative. It appeared she had hearing loss but the clinicians did not have a lot of confidence in their results because she was so uncooperative. We took her for a follow up at another hearing clinic covered by our insurance in March 2010. This time she was much more cooperative and the results were much more reliable. She seemed to have some minor hearing loss in at least her right ear. The audiologist referred us to an ENT for further testing. Our ENT said it was only mild hearing loss and not to worry about it. At the time, the buck stopped there.
E has a major history of severe ear infections and has had PE tubes inserted twice. Is her potential hearing loss something she was born with or a result of all the ear infections? Who knows but since we have not had her hearing tested in over a year it is probably time that we have it done again. We made this decision after hearing Ms. Carahaly say that even a mild hearing loss can affect children learning to talk, especially children with speech disorders. Some of the ending sounds in English, like /s/ and ed pronounced /t/, can be missed if a child has minor hearing loss. Here is a chart put together by the Education Audiology Association that I found pretty helpful.
For us, all of this begs the question, does E have problems following multiple step directions because she has hearing loss or because she has Auditory Processing Deficits? This is something that we will have to tease out over the next few years.
There have not been any studies to see how many children with CAS also have Auditory Processing Deficits. However, Ms. Carahaly stated that in her practice, about half of the kids that present with CAS also have Auditory Processing Deficits. For us, this is something that we need to keep an eye one and have E tested for eventually.