Monthly Archives: June 2011
|June 29, 2011||Posted by Laura under Apraxia Awareness, Treatment|
When I first suspected that E might have Apraxia, the Apraxia-Kids website was one of the first places I turned. The Family Start Guide gave me an overview of what I needed to do and information about CAS. I joined the e-Community to ask questions but soon realized that their Facebook group had more members and moved much more quickly. I can’t even begin to tell you how invaluable it was to find other families who had a child with CAS. Having a child with a rare disorder when you (at the time) don’t know anyone in real life whose child has the same thing is extremely lonely. Developing some sort of community with similar people is an absolute must. We are extremely lucky to be living in the age of the internet for this reason alone.
CASANA was founded by Sharon Gretz, a parent of a child with CAS, in 2000. Go here and here to read a wonderful two part interview with her. CASANA began as a parent support group but now also provides high quality professional and parent education workshops and conferences, an Apraxia Treatment Research Fund, and Walks for Children with Apraxia of Speech to raise awareness and funds for treatment of CAS.
One of the important things that CASANA is provide education workshops for professionals. Less than fifteen years ago, little was known about CAS. ASHA (the American Speach-Hearing-Language Association) did not release a postion statement on CAS until 2007! Some SLPs have never treated (or realized they were treating) a child with CAS. It is imperative that not only are parents educated about CAS but also that SLPs are as well. This summer CASANA is sponsoring the tuition for 20 SLPs to attend a four-day intensive Apraxia training institute at Dusquesne University.
Very limited research has been done on CAS. Primarily it involves case studies of a handful of children. CASANA is trying to change that. They are working to organize a database of children with CAS (much like the one used by Autism researchers) so that researchers can find enough subjects to conduct more valid studies.
Even if you have never heard of CASANA, if your child has Apraxia, you are most likely benefitting from their work in one way or another.
Another CAS parent entered CASANA in the Vivant Gives Back Project. CASANA has the opportunity to win up to $250,00 to support its programs. This would be the largest gift CASANA has ever received! This contest runs through August 27th and you can vote daily. Please click on this link to vote each day and please pass this along to your friends. It will only take a moment of your time.
Here is a video put out by CASANA that will hopefully encourage you to try and help us.
I don’t often ask for people to do things like this. I’m not connected with CASANA in any other way than I know they are helping E and other kids like her. Please join me in helping them.
|June 28, 2011||Posted by Laura under E, Special Education, Treatment|
I am not a confrontational person by nature. I don’t like to hurt people’s feelings and I’m much more likely to try and smooth over disagreements rather than go at them head on. These traits are not to my advantage when advocating for my child. As hard as it is, I’m finding that in order to be successful, sometimes I need to be confrontational and outspoken. Other people’s feelings have to come second to the well-being of my child. If I don’t do this, no one else will.
I’m realizing that I need to grow more of a backbone when it comes to who is treating my child.
Along that line of thinking, there are two types of speech therapists with which I am familiar: SLPs and SLPAs.
SLPs (Speech Language Pathologists) have earned a Master’s degree and satisfied licensure requirements in their state. Many have gone on to earn the Certificate of Clinical Competence in Speech-Language Pathology (CCC-SLP) offered by ASHA. In order to earn a CCC-SLP, an SLP must also complete a 400 hour supervised clinical practicum, a 36-week full-time postgraduate clinical fellowship, and pass the Praxis Series examination in speech-language pathology administered by the Educational Testing Service. SLPs administer diagnostic tests, communicate diagnostic test results, diagnose, propose treatment, and most importantly provide speech therapy.
SLPAs (Speech Language Pathologist Assistants – often referred to as “Slipas”) are support level personnel licensed by the state in which they work. Although SLPAs have been in existence for more than 30 years, it has only been in the last decade or so that specific licensure requirements were implemented. This was needed to help expand the way in which to deliver speech therapy services because of a shortage of SLPs. SLPAs can meet licensure requirements by having either an Associate’s or Bachelor’s degree and 70 hours of fieldwork or clinical experience. SLPAs must work under the supervision of an SLP. While the SLP does not have to actually physically supervise therapy sessions in the room, they must provide a treatment plan for the SLPA to follow. Among other things, a SLPA cannot interpret testing, participate in parent conferences or IEPs without the SLP being present, or provide counseling outside of the patient’s treatment.
I read once that the relationship between a SLPA and SLP is like the relationship between a dental hygienist and a dentist. A dental hygienist is perfectly capable of routine cleaning of your teeth but a dentist interprets x-rays, performs surgeries, and creates treatment plans.
Notice that an SLP has a Master’s degree and may have more than five times the hours of fieldwork required of a SLPA.
E has worked regularly with three SLPAs over the last two and half years. In fact, now that I think about it, she has worked just as often with a SLPA as an SLP, perhaps even more. Her SLPAs have been among the kindest therapists. Although I was initially uncomfortable with her be treated by SLPAs, each SLP told me how wonderful each SLPA was and that E was in good hands and would be just fine. At our last IEP meeting when our Advocate told the district that we wanted E to work with only SLPs and no more SLPAs. Imagine my surprise when they acquiesed without so much as a blink. Who knew it was that easy?
And herein again comes the problem with my personality traits. I was worried about hurting our SLPAs’ feelings. In fact, at our last session, I could tell she was hurt. I felt bad but I kept reminding myself this is about E and what she needs not about someone else’s feelings.
If you had a rare cavity that needed an extraordinary amount of treatment, the kind of cavity that not all dentists have even seen, would you be okay with a dental hygienist performing the surgery even under the treatment plan of an experienced dentist? I doubt it. You would want a dentist, and not just any dentist, but a dentist who had seen and treated this kind of rare cavity before. I know that I would.
So now here we are, ready to go meet E’s new SLP this afternoon. This will be the eleventh speech therapist she’s worked regularly since she first began speech therapy at twenty months old. This doesn’t even count the substitutes she’s worked with when someone was out. And people wonder why she has a hard time working with new therapists? It’s because we keep switching things up on her. E needs to be able to trust her speech therapist. The therapist is working with her at her most vulnerable. How would you feel with having to see eleven different doctors while seeking cancer treatment? How would you feel as a parent if you had had to place your child with eleven different daycare providers in a two-year time period? You get my point.
And in a totally unrelated piece of news, E wore ballet shoes at her dance lesson yesterday!!!