Category: Diagnosis

Mr. Miyagi

E is losing her occupational therapist at the end of December.  She is a victim of school district budget cuts.  It is cheaper for the school district to hire independent contractors (read no medical insurance) than to keep their own OTs on staff.  E will of course continue to get services but it will be with a different provider.

I’m sad we are losing her as part of our team but resigned to what is happening at the same time.  It wasn’t always this way.

There was a time when I knew E had CAS but couldn’t get anyone to diagnose her.  I finally found an SLP who diagnosed her and we began therapy with her immediately.  I put all of my faith in her.  I knew we were in for a marathon and she was going to be the coach – our Mr. Miyagi if you will.  Then four months into therapy she decided to stop seeing E because we didn’t fit into her schedule.  E continued to see another SLP in the practice but she was not as experienced dealing with CAS.  E didn’t really care but I was devastated.  Mr. Miyagi had abandoned us.

In reality, it was I and not E who needed a Mr. Miyagi.  E was completely dependent on me and I needed someone to tell me what to do.  I would do anything I was told, I just needed someone to tell me what I should do.

In the three years since that happened, I have come to the realization that there will be no Mr. Miyagi for me.  Instead, I have to be my own Mr. Miyagi.  I do the research.  I make the treatment plan.  I find people to put on our team to help make this happen.  The buck stops with me and it’s scary as hell.

Losing that first SLP was the worst.  We’ve gone through several more – well, eight to be exact.  We’ve found another specialist, one who knows her stuff, one who wants to be on our team.  She treats me like an equal.  She’s the expert in treating CAS and I’m the expert in E.  The two are not synonymous so we have to work together to come up with the treatment plan that works best for her.

I’m really going to miss our OT.  She has worked with E for two and half years, longer than anyone else has worked with her in the school district.  She’s knows her stuff and she genuinely cares.  She’s going to be a real loss to our team.  E has come a long way in her sensory processing and fine motor delays journey because of her.  I’ll be forever grateful but we must pick up and move on.

We’ll have to wait and see what January has in store for us

Better Hearing and Speech Month

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.”

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