Monthly Archives: April 2012
Better Hearing and Speech Month
| 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.”
Mommy Always Knows Best
| April 26, 2012 | Posted by Laura under Celebrations, E, Misdiagnosis, Special Education |
Experienced special needs parents will often tell new ones that the most important lesson they will learn will be to follow their gut. Seek out the knowledge, expertise, and advise of specialists, doctors, and educators, but in the end, you know your child best. While others may be experts in their fields, you are the expert in your child. You are the one who lives with your child day in and day out. You are the one who needs to feel comfortable with each decision you make.
(As an aside, a good specialist, doctor, or educator already knows this and will support you. A good one will not perceive themselves to be the expert in your child and insinuate that if you would only do something their way, you child would be so much better off. I remember watching E’s first preschool speech teacher working with all the kids in her classroom. To me it looked exhausting and I told her so. I told her how much I appreciated the work she did and I didn’t know how she did it. She looked me right in the eye and said that what she did paled in comparison to what special needs parents like me do day in and day out. She said she only worked with these kids three hours a day a few days a week. Special needs parents live this experience every day of their lives. She told me she appreciated what I did and knew it was hard and that I was doing a good job. I left in awe that I had met a specialist who got it!)
When E turned three, I reluctantly allowed her to attend a special education preschool for children with severe speech disorders. I knew that all of the research on CAS states that one-on-one speech therapy is what a child needs, but I needed to sign the IEP in order for her to begin getting any services. If I fought the issue, E would not receive any services because there was no old IEP to use as “stay put.” My husband and I put up a fight and came away with two fifteen minute individual speech sessions a week in addition to the speech classroom. This was only a quarter of the amount of individual speech therapy E had been receiving prior to turning three. We were assured that the speech classroom would help E if we just gave it a chance.
So we began sending E twice a week to speech preschool and three times a week to a typical church preschool. E’s speech therapists were talented and dedicated but at that time not particularly informed about research on best practices for CAS. (We soon took care of that.) E regressed, however, because the eight hours a week of speech preschool (essentially group speech therapy) did not equate to the three to five 30-minute individual speech sessions she needed. After additional IEP meetings, E’s individual speech therapy allotment increased and we settled into the routine of two days a week of speech preschool and three days a week of typical preschool.
E made progress, a lot of progress. She was doing well at her typical preschool, participating in circle time, and enjoying herself. My intent has always been for E to be mainstreamed in regular education classrooms. She was doing well at her typical preschool and now seemed the time to begin. She certainly continued to need speech therapy and occupational therapy but she functioned quite well in a typical classroom.
As we discussed this issue with the experts, we discovered that the E they saw in speech preschool was not the E we saw at home nor the E her typical preschool teachers saw. In speech preschool, E was quiet and withdrawn. She avoided eye contact and did not interact with her peers unless pressed by an adult. She did not initiate conversations with her peers. (Although it is interesting to note that nearly all of her “peers” were speech-delayed as well. She did spend time at recess with typically developing kids but I don’t think twenty minutes a day was enough time to be able to build rapport.) She did talk to adults but only about topics that interested her. I’m sure you can see where I am going with this. In speech preschool, she exhibited autistic characteristics. In her typical preschool, she did not.
Then and there I decided that we were done with special education preschool. It was not working for E. Spending time with children with other delays was not helping her. She was copying their behaviors rather than building typical ones. She was around some typical developing children at this school but her speech disorder and the subsequent social delays it caused were stopping her from having typical interactions. E was doing well in her typical classroom and that was where she was going to spend her time.
In January of this year, E began attending the typical church preschool five days a week. She still gets individual speech therapy four times a week and occupational therapy twice a week. I have been very observant of her social interactions at school. As the specialists are so oft to remind me, her typical preschool teachers only have experience with typical children. Yet, they didn’t seem to understand that that was exactly what I wanted. E was receiving speech therapy and occupational therapy from experts. I wanted her to receive “social therapy” by being around typical children with teachers that would encourage her interactions but also allow here to mature at her own pace. There was an adult for every two children in her speech classroom. In her typical preschool, there was one teacher and about seven children.
I watched E through one of the observation windows in the first couple of weeks and spoke to one of her teachers. It was clear she wanted to play with other children. She would follow alongside them and wait. She would look at them and wait, hoping they would include her. She didn’t know what words to use to enter into their play and so she was an observer and an outsider. But it was obvious from watching that she was interested, she did want to play with them, she just couldn’t figure out how to break into their play without talking.
Then something amazing happened. Over the next few weeks and months, E’s play at home began to take off. She had always been good at pretend but without words. She could pretend to feed a doll or to make someone dinner with play food but she didn’t use her words to pretend. Since January she has been coming up with entire scenarios and talking while pretending. She has toys talk to each other in different voices. She is able to play imaginatively with S and A. This developed solely because of attending a high quality typical preschool with typical kids and it happened in a very short period of time.
These last four months have been nothing short of amazing. E has matured socially by leaps and bounds. Four months ago she couldn’t figure out how to play with other kids and now we are dealing with her trying to boss them around. Her preschool teacher told me last week that she was directing all the girls to play princess. Some of the boys tried to play with them and she told them they could not be princesses because they were boys. Instead, she instructed them to be puppies.
E talks about her friends at home. We have give and take conversations with her on topics we choose. She interacts with the other children at school. She wants to be their friends. She talks to them. E, like many children with CAS, used to prefer to talk to adults because they would be more likely to make the effort to figure out what she was saying. The speech preschool placement just compounded this problem. There were adults all around to talk to and the kids all had speech delays or disorders so they couldn’t understand each other. Because there are fewer adults in her typical preschool, she was forced to interact with children and is thriving because of it.
E is actually catching up socially. She is maturing faster than normal because she is catching up. I think her social skills have grown at least a year in just four months. This is an example of why it’s important for parents to follow their gut. I knew the speech preschool was no longer the right placement for E. The special education preschool experts told me otherwise but I believed in my heart that they were wrong and E is now thriving in a regular preschool classroom because I didn’t let them dissuade me from what I knew was right for E.
