Posts Tagged by CASANA
|October 18, 2012||Posted by Laura under E, Learning to Read, Special Education|
Over the summer, E had a two-week break in speech therapy when we traveled to Boston for the CASANA Conference. When we started up again, one of her speech therapists was still on vacation so it was an entire month before we got back onto our regular schedule. I thought the break would help E, that she would be refreshed. Instead, it was like she’d had a taste of freedom. She didn’t want to do speech therapy.
She’s verbal now and she was able to tell us that she didn’t want to go and that she wished she was like S and didn’t have to do speech all the time.
What I really wanted to tell her was, “I know honey. I don’t want you to have to go to speech anymore either.”
Instead I told her I was sorry and that she still had to go to speech. I understood that she was frustrated and tired but she’s made so much progress and will continue to make more progress. One day she won’t have to go to speech anymore.
When will that day be? Five years, ten years? To me it seems like a lifetime. To her it seems like eternity.
Her speech therapists were wonderful and switched things up a bit. They tried to give her more choices in therapy, tried to make things more fun. We pushed through the hump and are now on the other side for her. At least at the moment, she’s no longer complaining about speech therapy.
I, on the other hand, am starting to feel the effects of burnout. E attends preschool five days a week, a distance from our house, but the right school to meet her needs. She has speech therapy four times a week, twice in our home, once at preschool, and once nearly an hour away in one direction. She has OT twice a week and plays on a soccer time that practices twice a week. We’ve also recently added in a once a week session with a children’s counselor to work on her anxiety. I have two other kids and I work part-time. Most of E’s therapy is on the days I don’t work so my days off are spent driving, driving, and driving, or sitting in my car waiting, waiting, and waiting.
I’ve been doing this, we’ve been doing this, for nearly four years. I’m tired. I’m exhausted. I’m burned out.
I know that next year will be easier in some ways. Once she starts kindergarten, most, but not all, of her therapy will be during the school day. I will have less driving and waiting to do.
But I also know that next year begins learning to read – a potential problem that I am acutely aware of because of my job and my educational background. What we give up in speech therapy next year may be replaced with tutoring or educational therapy. The public school system is not set up to proactively address potential learning difficulties. Instead it addresses kids who are already failing.
One of the things I have learned from our experience is to be proactive with E. We are proactive with addressing her anxiety difficulties now rather than waiting for them to worsen. I am working with her at home on pre-reading skills in addition to her regular preschool curriculum. I notice the other day that she doesn’t know that Flag Salute. I downloaded it from iTunes so that we can listen to it over and over again in the car. She will need to be able to make a reasonable attempt at it next year in Kindergarten.
Being proactive is exhausting. I’m burned out but I don’t have a choice. I’ve got to push through the hump and hope I’ve still got enough energy when we get to the other side.
|April 28, 2012||Posted by Laura under Apraxia Awareness, Diagnosis, Early Intervention|
The month of May is Better Hearing and Speech Month. Another CAS parent I met through Facebook came up with the idea of posting a fact about CAS on Facebook each day during the month. I thought this was a great idea so I came up with 31 facts about CAS that I am going to use. I’m posting them here in case you would like to do the same thing. You can certainly modify any of the facts and make them more specific to your child.
– All of these facts either came from documents in CASANA’s Apraxia-Kids Library, ASHA, or the NIH. –
Let’s spread Apraxia Awareness during the month of May!
May 1 – Childhood Apraxia of Speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.
May 2 – In the past CAS has been referred to as verbal apraxia, developmental apraxia, verbal dyspraxia, developmental verbal dyspraxia, and developmental apraxia of speech. In 2007, an ad-hoc committee formed by the American Speech Hearing Association (ASHA) determined Childhood Apraxia of Speech is now the preferred terminology for this disorder. The term CAS is used to differentiate this disorder from adult-onset Apraxia of Speech.
May 3 – CAS is a low incidence disorder. Best estimates suggest that about 1 in 1000 children (0.1%) of children are affected by CAS.
May 4 – Some people think that the incidence of CAS is increasing but there is currently no published scientific data to support this.
May 5 – Currently, the causes of CAS fall into three known categories. First, CAS can be caused by known neurological injuries, ie., intrauterine stroke, infection, or trauma. Second, CAS can occur as a primary or secondary sign in children with specific and known genetic or metabolic disorders. Third, CAS can present as idiopathic; that is, not associated with any known neurological or complex neurobehavioral disorder. Essentially there is as yet no known cause for the disorder in this subgroup.
May 6 – The term oral apraxia indicates that a person has difficulty with volitional control of non-speech movement; ie, sticking out the tongue, puckering, smiling, blowing, licking. Oral apraxia often accompanies CAS but that is not always the case. However, it is very rare to fairly unheard of for a child to have oral apraxia and not accompanying CAS.
May 7 – “Pure” CAS is when no other speech, language, cognitive, or sensory issues coexist with the disorder. The professional literature states that “pure” CAS is very rare.
May 8 – A child with CAS may also present with other motor planning deficits. Limb apraxia refers to motor planning deficits relating to arms, legs, fingers, etc. Global apraxia refers to motor planning deficits with all of the above.
May 9 – Diagnosis of CAS falls under the scope of practice of a Speech-Language Pathologist not a neurologist or other MD.
May 10 – A diagnosis of CAS cannot be confirmed until a child has enough of a speech repertoire to determine that there is a deficit. A very talkative two-year-old who is completely unintelligible may be able to be diagnosed but a nonverbal four-year-old would be more difficult. Early intervention is critical and often a working diagnosis is made so that therapy can begin at a very young age.
May 11 – The American Speech Hearing Association (ASHA) came out with a Position Statement on CAS in 2007. In it, CAS is identified as a specific speech disorder and recommendations for the amount and type of speech therapy is given.
May 12 – Most treatment methods in the professional literature describe variations of therapeutic multisensory input to the affected child. Use of multisensory strategies may incorporate input that is visual, auditory, proprioceptive, and tactile in order to teach the child the movement sequences for speech.
May 13 – Appropriate speech therapy for CAS is three to five times per week for 30-minute individual sessions. As children improve and develop speech motor control over volitional utterances, frequency can be reduced accordingly, as long as they maintain and generalize improvements
May 14 – Although appropriate treatment is intensive and takes place over a number of years, children with CAS are capable of making many gains and many are capable of developing intelligible speech. Some children may have some minor differences in their speech, their intonation may not be perfect, or others may perceive some sort of accent. However, most children will speak in a way that others understand.
May 15 – Augmentative and Alternative Communication (AAC), such as sign language or an electronic device, can often help children with CAS. With proper planning and implementation, AAC is extremely unlikely to interfere with the child’s development of speech.
May 16 – Speech therapy for CAS is expensive and intensive. Parents and clinicians need to advocate for children with CAS to ensure that they receive the appropriate amount of therapy.
May 17 – “I do not expect to provide speech education for children with developmental apraxia of speech on a cursory basis for it may be the most important part of their entire education.” – Robert Blakely.
May 18 – Children with CAS have most likely experienced a lot of failure in their communication attempts. As a result many either withdraw from communication interactions or develop behaviors related to their frustration.
May 19 – Therapy for CAS is expensive. Many medical insurance plans do not cover speech therapy for CAS because it is a congenital issue and not a result of a specific injury. Other medical insurance plans may cover speech therapy but only for a limited number of visits. Due to the frequency of visits needed, insurance coverage may run out quickly. The private speech therapy costs for a child severely affected by CAS can easily reach $15,000 per year.
May 20 – Children with CAS can qualify for free or reduced-cost speech therapy through state Birth to Three Early Intervention programs. Once they reach three years of age, they can receive free services through their local school district.
May 21 – Parents looking to augment the publicly offered speech therapy may be able to find free and reduced-cost speech therapy services through Scottish Rite and local universities.
May 22 – Children with CAS often have poor oral and written language and narrative skills. As they get older, they should be carefully monitored for difficulties with reading, writing, and spelling.
May 23 – As recently as the mid 1990s, little educational information was available for families whose children were diagnosed with CAS. In 1997, Sharon Gretz, the mother of a son with CAS, established the first parent support group in the U.S. and began working with local experts to conduct educational training programs for SLPs. In 2000, the Childhood Apraxia of Speech Association of North America (CASANA) was founded with the exclusive mission of representing the needs and interests of children with CAS.
May 24 – Educating professionals and parents about CAS is CASANA’s primary goal. CASANA is an ASHA-approved provider for continuing education and since 2002 they have provided high quality workshops and other educational opportunities throughout the country.
May 25 – CASANA has held a National Conference on CAS each summer since 2004. This gives parents, SLPs, educators, and other caregivers a chance to meet with each other as well as learn from CAS experts about the latest research on CAS.
May 26 – Recently CASANA opened up an online apraxia research registry where families can submit information about their child so that researchers can identify children for participation in qualified research projects to further understand the causes and nature of CAS.
May 27 – Children with CAS often have family members who have a history of communication disorders or learning disabilities. This observation and recent research findings suggest that genetic factors may play a role in the disorder.
May 28 – Children with CAS are a heterogeneous population. No two children are exactly alike. Difficulties and ease with particular sounds may vary across the population.
May 29 – Progress in therapy may be slow but it should not be unproductive. If a child is not making noticeable and meaningful progress after several months, then treatment needs to be reassessed.
May 30 – CASANA launched its Apraxia Treatment Research Fund in 2006 in order to advance what is known about effective treatment for children with CAS.
May 31 – CASANA’s motto is “EVERY CHILD DESERVES A VOICE, AND WHENEVER POSSIBLE, THE ONE THAT IS THEIR VERY OWN.”