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Lessons by Abigail: Educating a Seasoned Speech-Language Pathologist Named "Mom" Reprinted from Disability Solutions www.disabilitysolutions.org by Carrie Olson, M.A., CCC-SLP
Carrie J. Olson, M.A., CCC-SLP is primarily a stay-at-home mom, and speech-language pathologist in private practice. She has 14 years experience as a SLP for public schools, with a focus on children with severe language impairment and Title 1 Reading. Carrie resides in Gaylord, Michigan with her husband, step-children, and children, one of whom has Down syndrome. Carrie would like to thank the many parents and professionals who shared their concerns, insights and stories on the Downsyn and Apraxia-kids listservs. They have been, and continue to be, an invaluable source of inspiration and support. At the time Abigail made her plea, approximately 6 months ago, sentences like these were highly unusual. She was more likely to simply say, "Tuck!" In fact, she still frequently uses just one or two word sentences. She has many well-rehearsed words and phrases that are clear and understood by most people, but much of her spontaneous speech is unintelligible. Sometimes, especially in new situations, she reverts to using jargon or "humming" as filler, in between real words. A typical encounter with a new person might elicit, " M o m m y n u n u n u n u u n u n u n u D a d d y n u n u n u n u u n u n u n u A b b y n u n u n u n u n u n u n u n u n u fuddy(funny)." Longer, spontaneous sentences are slowly becoming more common in her everyday speech. Even I have been surprised by her correct use of many grammatical structures in her spontaneous speech. Some recent examples are: ! "Dere"s two appos pow Nadan." There’s two apples for Nathan, Abigail’s brother. ! "Duh baby calf nooseen, Mommy." The baby calf nursing, Mommy. ! "Wet’s go on nat tain." Let’s go on that train.
desire—to share what you learn along the way. This is especially true for parents in professions where being advocates for people with Down syndrome intersects with their knowledge and skill. It brings a new dimension to the cliché we often hear: Listen to your child. He’ll teach you every thing you need to know. Carrie Olson, a speech pathologist with the public school system for 14 years, became a mother of a charming girl who has Down syndrome four years ago. As you will learn, Abigail also has Childhood Apraxia of Speech. Carrie found herself thrown into the cauldron of poorly defined diagnoses, inadequate diagnostic tools, and the realization that her daughter needed to be evaluated for a speech disorder not widely accepted by her peers. True to her spirit, Carrie jumped in with vigor and tenacity to first obtain an appropriate diagnosis, followed by appropriate, creative, individualized therapy for her daughter. There are countless people in all types of professions who are vigorous advocates for our children who are not parents of a child with a disability. We are honored, amazed, and grateful to count them as our allies and friends. Our children have better lives because of their work. Even so, there’s nothing like the approach of a parent who is "walking the walk" along side you to help you find your way. Somehow they hear that almost inaudible sigh and catch those minuscule details that are often the difference between success and exhaustion. Children with CAS often find it difficult to speak "on demand." Like many children with severe CAS, Abigail does not generally use her words in public. For quite some time, it was difficult getting her to talk to anyone outside the family. I believe this is not due to shyness, so much as stress impacting her ability to speak. When she was almost three, we were attending two playgroups on a weekly basis. One of the groups was a community playgroup, open to anyone with a child, birth to three years of age. The other was a special-needs playgroup, staffed by an occupational therapist, speechlanguage pathologist, physical therapist and special education teacher. Bothgroups were held in the same room on different days.Both groups had an equal amount of children and adults. Abigail was much more likely to interact in the community playgroup, than in the special- needs playgroup.The children in the special-needs playgroup were all more verbal, so I don’t think that was the reason. The therapists in the special-needs playgroup were all very lowkey and worked hard to have a supportive environment. respond. Being a speech-language pathologist (SLP) myself, I am the first to admit that I never really considered the possibility of CAS when Abigail was a baby. I knew children with Down syndrome typically had more difficulty with speech, than with other areas of development. I knew that receptive skills were usually more advanced than expressive. I also knew signing seemed to help many children acquire speech. I considered myself quite well versed in the area of CAS. Looking back, I’m amazed the possibility of CAS didn’t click sooner. It hit me suddenly one day, when Abigail was about 20 months old. Here are some examples of classic signs of CAS Abigail demonstrated that turned on the light for me: •Children with CAS are reported to "lose words." At 18 months Abigail only had a few words (book, duck, dada, bubba-brother, bye, oo-Pooh and moo). Some other words she had said appropriately once or twice, then never again. •The speech of children with CAS is described as unpredictable and variable. Even when she had a word, Abigail had difficulty reliably producing the sounds in the correct place and order. "Book" and "duck" had been her first two words and she had used them fairly consistently for several months. Then, suddenly she started mixing up the consonants. Sometimes book was "boo," sometimes "doo," and other times "buh." •Children with CAS have difficulty combining and sequencing sounds to produce words. Abigail was able to babble quite a few consonants /p, b, h, d, m, w, j, t/, including some difficult ones /r, l,/. Vowels we heard f r e q u e n t l y were /a, oo, and ee/. When she babbled, she could combine these consonants and vowels into a variety of combinations. Her difficulty came in combining these consonants and vowels together to produce words. •Low tone cannot account for the primary speech difficulty of children with CAS. Even though Abigail had the common open-mouth posture and relaxed tongue common to children with Down syndrome, I knew low tone was not the primary reason for her lack of words. I knew this because she was able to babble many different sounds and sound combinations that she wasn’t able to use for words. She could roll her tongue and do great popping sounds with her lips. She clearly had the strength and the ability in her structures. If she could babble those sound combinations, then low tone was not preventing her from saying the words. •Differences in Receptive and Expressive Language Skills. A gap between receptive and expressive language ability is often reported in children with CAS, with receptive ability exceeding expressive ability. Abigail’s receptive language was well above her expressive. She was able to follow many simple commands, she knew the names of many objects and animals, attended very well to books and pictures, and knew quite a few actions to many different fingerplays and songs. She had a sign language vocabulary of 40-50 words. It was obvious a cognitive deficit was not the primary reason for her expressive language delay. •Difficulty "Speaking on Demand" Children with CAS often have difficulty speaking on demand or under even minimal pressure. Abigail appeared more able to produce her words if she had a carrier sentence provided. Asking her, "Who is that?" and pointing to Pooh, usually threw her for a loop. If, instead, I said, "Look, it’s _____?," she was usually able to say, "Oo" for Pooh.
It is difficult, if not impossible, to diagnose apraxia at such a young age. I was certain enough to begin treating Abigail’s lack of speech as such, and planned to continually evaluate as we went along. I had her "suspected apraxia" diagnosis confirmed by two private speech-language pathologists. If you suspect your child may have CAS, or if you feel your child’s severely limited and -unclear speech has not been adequately investigated or explained, it is essential to have an evaluation by a speech-language pathologist with expertise in CAS. More importantly, the SLP should be open to the possibility of apraxia in young children, and particularly young children with Down syndrome. Unfortunately, through my experience I found many professionals are not as likely to recognize CAS in children with Down syndrome. The good news is that this seems to be changing. I’ve seen more and more parents of children with Down syndrome, joining the Apraxia-Kids listserv, an email discussion group, after their child has been diagnosed with apraxia. The reasons for this hesitation in diagnosis are explored in depth in Dr. Libby Kumin’s article in Volume 5, Issue 2 of Disability Solutions. In a nutshell, SLP’s are traditionally more likely to attribute speech difficulties in children with Down syndrome to low muscle tone (dysarthria) or low cognitive functioning. The question here is not whether those reasons exist. The question is, "What is the primary roadblock to speech for this particular child?" In my own experience with Abigail, low tone or cognitive delay could not account for her speech production difficulty. After reading many postings from parents to the Down syndrome listserv over the last four years, I have to conclude that this is true for many other children with Down syndrome as well. There are some pervasive notions regarding children with Down syndrome.
"Sara’s got that stubborn Down syndrome streak. She talks when she wants to." "Jeff loses words because he’s lazy. He’d rather just sit than interact." "Danny will talk when he’s ready. Just give him time." Without a doubt the people who make these type of remarks are sincere and have the best of intentions; however, they are wrong. The last example above is the most dangerous because it is so widely accepted. Professionals and parents alike often assume that because a child has Down syndrome, he will talk late. This type of thinking prejudices how we view therapy and expected progress. It allows us to sit back and waste time waiting, rather than aggressively searching out the reason and providing the appropriate therapeutic intervention. If not for Abigail, and the lessons she has taught me, I may also have accepted this erroneous belief. More helpful and accurate remarks for the children above are these comments: "When Sara is comfortable and feels successful in her interactions, she will be able to talk more." "Jeff will retain words better when he has practiced them enough to develop an intact motor plan for those words." "Something is inhibiting Danny’s expressive language. He seems to know much more than he can communicate. Obviously, he is ready to talk. We need to find what is most inhibiting his speech, so we can intervene appropriately."
However, these are merely words and may or may not reflect the attitude and belief of the person making them. They must be followed by appropriate, assertive action and treatment plans.
Obtain an Accurate Diagnosis In the last issue of Disability Solutions, Dr. Kumin outlined the essential tools and techniques to evaluate people with Down syndrome for CAS. As a mother, and SLP, these are some things I found are essential for parents to do to expedite the process.
Be sure the SLP has experience with CAS. As mentioned earlier, it is also essential that the professional is open to the possibility of CAS in children with Down syndrome. Take the three issues of Disability Solutions that cover speech intelligibility and CAS (Volume 5 Issues 1-3) to the evaluation. Libby Kumin’s articles show this diagnosis is too frequently missed in children with Down syndrome. If your child does not have CAS, but another concern that is getting in the way of her understandability, these issues will help guide the speech pathologist in designing appropriate treatment. It would be best if the SLP also has experience with children with Down syndrome, but if you have to choose, go with one who understands treating CAS. Go to the evaluation armed with information. Diagnosis of CAS is difficult to make in a typical 90 minute evaluation. Teasing out an apraxia diagnosis becomes even more difficult when there are other extenuating factors, such as low tone, hearing difficulties, inability to attend, and so on. If you suspect CAS, let the SLP know beforehand that your goal for the evaluation is to learn whether CAS may be contributing to your child’s speech difficulty. Anything you can have written down and organized will be helpful. Some things you will want to let the SLP know are: •History of babbling, laughing, using words and so on.
•Any words, word approximations or sounds your child produces. Consider an audiotape or writing down how various words are produced. If they are at the babbling stage, it’s helpful to tape record them while they are babbling. Many children babble more when they are lying in bed, looking at books, or playing in the bathtub. ! Any words or word approximations that your child has used and then "lost." Your child’s ability to imitate sounds or words.
• Your child’s ability to "perform" on demand. They may be able to use a certain word or phrase consistently around their parents, but when told to "Say ______ for Aunt Louise," they appear completely unable to do so.
•Are words produced differently with each successive repetition?
• If speaking in sentences, are words less understandable as sentence length increases? Does your child use normal rate, rhythm and stress?
•Does your child have some well-rehearsed phrases or song lyrics that are fairly clear? •Does your child ever look like he or she is trying to get a word out, but just can’t get her mouth to work for them? •Provide examples of things your child understands. What body parts do they know? What are some directions they can follow? Do they use any sign language? This will give the SLP an idea of receptive language ability. • When you have gathered this information, share it with the evaluator before the assessment. There’s not much time to review information in a 90 minute evaluation.
Therapy for Childhood Apraxia of Speech Therapy for CAS should look different than traditional articulation or language stimulation therapy. There are a variety of treatment approaches, but therapy for CAS should always incorporate principles of motor learning. These principles include:
• A great deal of repetition and drill of the target productions. Target productions are whatever sounds, words, phrases or sentences the SLP is "working on" with your child. They may be simple consonant- vowel productions (baa, moo, whee), more advanced productions (baby, Daddy, okay), two-word phrases (my turn, help me) or longer sentences including "a" and "the."
•A focus on motor placement. This refers to helping the child with the proper positioning of their articulators (lips, tongue, teeth, cheeks, palate, and mouth) to produce the sounds correctly.
•Feedback regarding productions. The child needs specific feedback about what is helping them produce the correct sound. Statements like, "Yes, you puffed your cheeks out that time" or "Uh-oh, you forgot to pop your lips. Let’s try again. Ready, Okay, pop your lips. You did it!"
Structuring the Session One very important component of therapy for CAS is multiple repetitions of targets, by your child, during each session. It is not helpful for the child, if the therapist is the one continually repeating the words instead of the child. This would be considered a language stimulation approach, which does not appropriately address the motor planning difficulties experienced by children with CAS. Multiple repetitions, by your child, are necessary to ensure adequate development of motor pathways. Research shows as the number of productions increase in a session, performance improves Depending on the child’s skills, targets should start with simple consonant- vowel (moo, Pooh, Ma, Baa) or consonant-vowel-consonant-vowel (Mama, baa-baa, Papa) combinations. Targets should be developed according to the sounds that the child finds easiest to produce. Children with CAS do not always follow a typical developmental acquisition of sounds and may have some later developing sounds, yet be unable to produce earlier ones. Some children need a therapy program that begins at the individual sound level. In this type of therapy, individual sounds should be given some meaning such as "oo" being the sound an owl or monkey makes or used as a word approximation for "Pooh," "moo," or "boo." Over time, therapy progresses to more complex c o m b i n a t i o n s . Children at this stage of language development need to experience success in early therapy to give them confidence and build trust in the therapy process.
Cueing Systems Use of a cueing system to aid in motor placement for individual sounds has been found to be a very helpful strategy for children with CAS. Since most children with Down syndrome are considered visual learners, visual cues are likely even more important for them. An example of a visual cue, would be pointing to your throat to cue for a /k/ or hard /g/ sound. Abigail has always responded very well to visual cues. In fact, she often cues herself when she is trying to remember a difficult sound. Sign language is also helpful in cueing children, as well as adding to their intelligibility.
Use Feedback Feedback for overall performance as well as specific word productions is an important consideration in therapy for children with CAS. However, research suggests children with Down syndrome often have trouble correcting their mistakes. In other words, once your child has said something in a certain way, it is very hard— sometimes impossible—for them to change how they say it even when they are reminded as they are saying it or told later they said it "wrong." This difference in learning may be specific to children with Down syndrome. For example, instead of correcting Abigail when she is spontaneously speaking, or attempting target productions, I take note of her incorrect production. Then, a few seconds or minutes later, I set up a context where that particular production will occur. Before she attempts the production, I utilize whatever strategies are necessary for Abigail to be successful. Such strategies may include: imitating me producing the target; visual cues; slowing productions; emphasizing particular sounds; unison production in which Abigail and I say the target simultaneously; and practicing similar targets. When I do correct Abigail’s speech, I stay away from negative comments. Instead of saying, "No, that’s not right," I use the visual cue and say, "Remember your throaty sound" or, "Let’s get that Popper." In my own experience with Abigail and other children with Down syndrome, I’ve learned it is important to have many successes before immediate feedback is given.
Other Therapy Components Other components of appropriate therapy include the immediate development of a functional vocabulary and expansion to phrases as soon as the child has approximately 30-50 words or word approximations. Play-based therapy is ideal for children with CAS, especially children who also have Down syndrome. Since language structures are also usually affected, generalization to real life situations is better in a play situation than in a "sit-down-and-drill" situation. By "play-based" I do not mean sit down in a room full of toys and follow the child’s lead. I also don’t mean play while the SLP provides words for what the child is doing. This method does not get enough repetition of targets, by your child. Therapy time needs to be planned and structured in order to maximize the repetitions of target words and phrases. Some of the session may include drilling with pictures, but most of the session should be fun, motivating play that naturally incorporates the target productions.
Obtaining Appropriate Service Therapy for children with CAS should be frequent and intense in order to provide the extensive repetition and specific feedback they require. It is much better to have two to four half hour sessions per week, than one or two hour long sessions. Convincing school personnel and insurance companies of the need for frequent, intense speech therapy can be an arduous task. Some school districts, however, recognize the need and gladly oblige. Those school districts have the financial resources and the desire to provide needed services for all children. Unfortunately, there are also many districts that, for myriad reasons, balk at providing those same services.
Homework for Parents I cannot stress enough the importance of parents in the therapy process. Follow through at home from supportive, involved parents is an integral part of effective therapy. If your child has CAS or you suspect she may, here are some ideas to get you started.
Ideas for Children Who Are Pre-Verbal Most parents already know to provide an enriched language environment for their children. Even so, I feel it is so important it bears repeating. ! Read to your children. Do this from the very first day of their life. We had two books we read over and over to Abigail, right from the start: Owl Babies and Little Gorilla. By two months of age, when Abigail was fussing and uncomfortable, the very best cure wasn’t walking her or singing or rubbing her tummy. All we had to do was sit down in the rocking chair and read "her books." Also, Owl Babies seemed to be the first words we knew Abigail understood. Provide a variety of music, but don’t forget to sing along!
• When reading books or singing, be sure to choose some books and songs that contain animal sounds. Point to the animals and make their sounds as you read. Sing Old MacDonald. Abigail was often kept happy during long car trips listening to Mommy or Daddy make animal sounds. She loved to sit in the back seat and hear, "The monkey says, OO OO EE EE AH AH, the cow says, MOOOO, the snake says, SSSSSSSSSS." Many children with speech difficulties are likely to attempt to produce animal sounds as some of their first words. • Counting books are also fun. Counting has a different sound than reading, singing and talking. Children typically notice the difference and it’s never too early to expose them to the idea of counting. ! Provide many familiar verbal routines with accompanying actions. Do them several times a day. We started these when Abigail was very young. She wasn’t able to sit alone, but could sit facing us, in our lap. We did Pat-a-Cake while holding both her hands and having her do the motions. She faced us for Row Your Boat as we held her hands and "rowed." •When singing, it is important to sometimes sing the verses slowly. Draw out the vowels and really enunciate the consonants, especially the last word in each line of the song. Children will often attempt to imitate words from songs, before they will imitate speech. Combining the sound or word with a visual cue or sign, may make it easier for the child to produce. Abigail attempted many of her first vowel sounds this way. ! Talk to your child. Use words throughout the day. Use conversational tones and talk as you would to a friend. Use exaggerated facial expressions. Engage her. ! Babbling is usually limited in children with Down syndrome. Pamela Marshalla, the author of, Imitation: How to Facilitate Imitation in Speech and Language Therapy lists the following as typical of children with speech impairments: 1.Produce fewer of these pre-speech vocalizations. 2.Experiment less with the variation of these sounds. 3.Spend less time practicing them. 4.Pay less attention to the sounds as they make them. 5.Pay less attention to others as they say them.
•Encourage more vocal play by spending a considerable amount of time each day imitating your child’s productions. Imitate productions exactly as they sound, even nonspeech productions, such as laughter, giggling, coughing, sighing, and so on. Imitate her facial expressions and movements too. Imitate for several turns, or as long as you can maintain your child’s interest. Don’t worry if you don’t imitate perfectly. Relax and have fun! Once in awhile, produce a sound you know she can do, but wasn’t just doing. When she is ready, she will start to imitate you. Provide novel sounds every so often. Use different volumes and pitches. Whisper the sounds; yell; talk low; talk high; sing the sounds. At first it may just entertain her, but eventually she will try the novel productions.
• Be careful not to over stimulate your child. Children need quiet times as much as we do. Make sure there are quiet times throughout the day, when there is no unnatural background noise. Turn off the TV and the music.
Ideas for Older Children Who Are Pre-Verbal To help your child produce more sounds, try the following: • Imitate any sounds your child makes. Coughing, laughing, sneezing, hiccups, are all fair game. Use a puppet, stuffed animal or action figure and have her imitate the sounds too. Laugh and have fun. • Think of activities or places where your child is more likely to produce sounds. Does she squeal with delight when going down a slide or splashing water in a pool or tub? Laugh when she is tickled? • Use music that repeats simple consonant-vowel combinations over and over. Singing Sounds a CD from Super Duper was made in collaboration with a speech-language pathologist and includes lots of repetition of consonant-vowel productions in it’s songs. • Use anything that encourages noise-making. Toy microphones, karaoke equipment, tape recorders, and kazoos work well. Decorate paper towel or toilet paper holders for "ready-made microphones." Older children may respond better to long wrapping paper rolls, just because it’s sillier. • For some children, stress is such an inhibiting factor that they seem unable to produce sounds when there appears to be an expectation for them. This is one reason to try to be as funny and silly as you can. Laughter and giggling can help loosen children up. Sometimes, doing something physical at the same time also helps relax them. Bouncing on a big ball, swinging, jumping up and down in a pool, or hanging from a balance bar are all things that may help "take their mind off" the expectation of producing sounds. ! Some children may have difficulty taking turns with sounds. They may make sounds at the same time as you. This is okay at first. Your child may be more comfortable producing sounds along with you. Don’t push to "perform" right away. When you think she is having fun and relaxed, which may be several sessions later, try using only one microphone and take turns with it. This helps give her a visual cue for turn-taking as well. Your child can see that she has to wait for the "microphone" before she makes her sound. Again, using a puppet to make the sounds and lots of silliness and laughter can help encourage her when she is reluctant.
Ideas for Children with Some Words Children with CAS may have difficulty maintaining words. Parents report their child used to say, a particular word or phrase, but seems unable to say it anymore. This difficulty has been mentioned by many parents on the Down-syn listserv. Whether your child has CAS or not, I believe it is crucial for children with Down syndrome to get very frequent, repetitive practice with their words in order to maintain them. In Neural and Cognitive Development in Down Syndrome, Lynn Nadel writes: In individuals with Down syndrome there is serious instability, of unknown origin, that hinders this accumulation of learning in some way. This fact suggests that special attention should be paid to ensuring that learning is strongly consolidated and perhaps repetitively drummed in. Fortunately, "repetitively drumming" words in can be fun! One thing I did with Abigail was to write down all the words I had heard her say. Then I sat down at the table with the rest of the family. Abigail’s brothers and sisters were all 15 years and older, so they were a great help. We brainstormed activities and games that we could use to elicit those words. • One of the games we played was Ring-around the Rosie. Daddy and Abigail’s brothers and sisters, played when they were home; if not Abigail and I held hands with Elmo and Baby (a doll) and they played with us. When we all fell down, we would stay down until Abigail said our name to get us up. Then we would get up and play again. In the b e g i n n i n g , Abigail needed lots of prompts, both with signing and us showing her what to do. At first, I just accepted the sign for "mama" and some lip movement, then I waited for the "mmm," then "Ma," then "Mama," and eventually "Mommy." It took almost a year to go from the initial "mmm" to being able to say "Mommy" consistently. Always be careful to accept what your child can offer at the time. It isn’t stubbornness or laziness that prevents her from getting a word out. For whatever reason, she is unable to, at that time. •Using a sign or a sound cue for the word you want can help your child bring it forth. Use of a puppet or stuffed animal is also helpful. If Abigail couldn’t come up with a word, sometimes I would say, "Let’s help Momo (Elmo) call Daddy." Then I would hand her Elmo and demonstrate calling Daddy. Other games we played to encourage name words were, "Where’s Momo?," "Who Should Momo kiss?," "Who shall I tickle?," "Night-night" and "Hi, Bye" !"Where’s Momo?"I hid Elmo and Abigail had to call him while looking for him. Mommy, Daddy or siblings can take turns hiding, too. I also used several boxes and hid Elmo or Baby underneath. Then Abigail had to "call them." ! "Who should Momo kiss?" and "Who shall I tickle?" were good for working on other people’s names and the word, "me." It’s especially fun if you have the Tickle Me Elmo that laughs when you press his tummy. • "Night-night": Get blankets and pillows and put everyone to bed. Saying their names and "night-night" as they are covered up; yawning, snoring, stretching, and singing Rock-abye-baby. ! "Hi, Bye": People or stuffed animals take turns going out the door. Say "Bye, ___" as they leave and "Hi ____" as they come in. May also work on "knock-knock," "Who’s there?" and "Come in." To achieve many repetitions of target words, there are many things that can be done using small objects. Parents can line up the items first, and have your child say the name at the same time as you. When finished, put them all in a big container, saying the names as they go in. Later on, you can expand to, "put away ____" or "Bye, ____ ." •Have play items representing target words take turns going down a slide. Say the object name as it goes down. Don’t forget to count the steps as it goes up, or say, "up, up, up." When it goes down, say, "Whee!" ! Draw a face on a big, tall box. Cut out a big mouth and "feed" the objects to "Big Box." You may also work on the words eat, mmm, and good. Draw a face on a small box too so you can have Big Box and Little Box. • Put the objects under blankets or towels. Feel them and try to name what is underneath. • Load the objects one at a time onto a big truck or boat. Again, asking your child to say the target words. • Put one object on each stair step. Sit and scoot down the stairs, saying the name of each object. • Take pictures of the objects or people using a Polaroid, I-Zone, or digital camera and make a book with the words written under each picture. Have your child "read" the book to different family members. Once a fairly good single word vocabulary is developed, start working on two word phrases that can be used over and over throughout the day. Use signs for the phrases. Some common phrases that can be used frequently are:
help your child practice the phrases many times naturally throughout the day. There are also many planned games and activities that these phrases would fit into. Nancy Kaufman, M.A., CCC-SLP, developer of the Kaufman Speech Praxis Evaluation and Treatment Kits (see page 15), explains that in the beginning, you will be "completely helping" your child produce these phrases by providing any cueing that is necessary. With Abigail, I would say, "My," while signing my and really sustaining the /m/ and vowel sound. When she attempted "my" I would then sign and say, "turn" until she did it. Sometimes, I had to help her by having her puppet sign and say it, too. I didn’t withhold things if she seemed unable to do it, but I did always give her many chances. For many working parents, especially those with other young children, it may not be feasible to actually plan activities and games. There are many natural times during the day when the words or phrases can be incorporated. Use them frequently! Whenever anyone goes in or out, say, "Bye ______," "Where’s Mommy going?," "Mommy go work," or "Look, Andy’s home." Whenever possible, incorporate your child’s speech targets into your daily routines and conversations. One thing we did was to post signs in different areas of the house to remind everyone of words or phrases Abigail could use naturally in those areas. These are the things that were written on our bathroom sign: When Abigail went to the bathroom, we would try to remember to work on a few of the phrases. We only used a few, each time and tried to facilitate a need for saying them. For example, Abigail loved playing in the tub. We would fill it just a little, so she would ask for "more water, please" Then we would fill a little more and wait e x p e c t a n t l y again. This was one of the first phrases she was able to say spontaneously, because it was very motivating for her. Turn light on / Turn light off Too hot / Too cold Ahh, just right I do it Turn off water / Turn on water /Put away / Go potty /More water / Please help me All done / Shut door /Please brush my teeth / My turn / ____’s turn / Help Me Bye _____ / Hi ______ / More _____ / I want / Me too / Turn off Turn on /Put away Fall down / That one/ Watch this / Let me / I do / Pick up
Ideas for Verbal Children Working on Intelligibility Longer phrases can be incorporated into any of the previously mentioned games. For example, when playing Ring-around the Rosie, the child could say, "Get up, Mommy" or "Help me up, please." It is still important to set up games or routines that will elicit the words often and throughout the day. With longer sentences, many children will need to work on slowing down and saying words one at a time to increase intelligibility. Tapping as they say each word, signing each word, or pointing to words on cards as the child says them are all ways to help improve intelligibility. Again, it’s best to work together with your SLP in determining what is best for your child.
Conclusion Do I think Abigail would be where she is today if I had not recognized she had CAS? No, I do not. I honestly don’t think she would be anywhere near where she is. In the beginning, each new sound combination required a tremendous amount of repetition. Often, when attempting a new combination, she would lose the old one. Sometimes only fleetingly, other times it was many months before she was able to consistently retrieve what she had lost. Therapy was intensive, laborious, and heartbreaking at times. For quite awhile, I wondered if I would have to directly teach her every phrase and sentence she would ever use. To my great relief, I can now answer that question with a resounding No! Appropriate treatment for CAS is essential if you feel your child may have a motor-planning disorder. Our children are worth it.
As Abigail has said a few times recently, "Ah done, Mommy? Wet’s go pay a game." ! ! ! References # Duffy, L. & Wishart, J. G. (1987). "A Comparision of Two Procedures for Teaching Discrimination Skills to Down’s Syndrome and Non-handicapped Children." British Journal of Educational Psychology, 57, 265-278. # Wishart, J. G. (1988). "Early Learning in Infants and Young Children with Down’s Syndrome." The Psychobiology of Down Syndrome. New York: NDSS # Davis, B. L. & Velleman, S.L., (2000). "Differential Diagnosis and Treatment of Developmental Apraxia of Speech in Infants and Toddlers." Infant-Toddler Intervention, 10 (3), 177-192. # Kaufman, N. R., (2001). Kaufman Speech Praxis Treatment Kit for Children Manual, Kit 2. Northern Speech Services. nss@traverse.com # Marshalla, P. (1999). Imitation: How to Facilitate Imitation in Speech and Language Therapy. Macula, CA: Speech Dynamics, Inc. # Nadel, L., (1995). "Neural and Cognitive Development in Down Syndrome" in DownSyndrome: Living and Learning in the Community, 107- 114. New York: Wiley Liss
Resources:
The Apraxia-kids Website www.apraxia-kids.org This is an excellent website developed by the Childhood Apraxia of Speech Association and The Hendrix Foundation. Among other information, there are many articles that may be helpful. Once at the Apraxia-kids website, look in the "articles" section. Two that may be particularly helpful, when planning for an evaluation are: ! How to Think About a Speech/Language Evaluation, by Sharon Gretz,
How to Find a Speech-Language Pathologist, by Marie Novak, M.A. Reg. CASLPRO, CCC-SLP also on: www.apraxia-kids.org
Cueing Systems There may be a SLP in your school system or area that has already been trained in one or more of these systems.
Visual Phonics International Communication Learning Institute, PO Box 39153, Edina, MN 55439-0153. 612-929-9381, 612-929-1053 (fax). www.icli.org A process of using physical signs made with your hands (similar but not the same as sign language) for each of the letter sounds. There are also written symbols for these sounds. Your child learns the physical sign right along with the auditory sound. Later, if your child has difficulty remembering the sound the letters make such as /b/, /ph/, and so on, you show your child the previously learned "sound sign." This works better than simply saying the sound for your child because she must draw on her own memory, which, in turn, strengthens the connections to that memory template in the brain. Use of Visual Phonics requires training in the program. Staffed by volunteers, so may take a few days to return phone calls.
PROMPT PROMPT Institute, 4001 Office Court Drive, Suite 305, Santa Fe, NM 87507. 505.466.7710, 505.466.7714 (fax). This is not a visual cueing system. PROMPT uses tactile-kinesthetic prompts (different types of touch) directly on the child’s face for the different sounds. Correct use of the PROMPT cueing system requires training and certification in the program.
Resources for Therapy for Children with CAS Kaufman Speech Praxis Treatment Kits for Children Published by Northern Speech Services. PO Box 1247, Gaylord, MI 49735. 888- 337-3866. www.nss-nrs.com Kit #1: $163.00 Kit #2: 193.00 There are two levels of the Kaufman Speech Treatment Kit available, Kit 1 and Kit 2. Both kits have picture cards arranged according to ease of production. On the back of each picture card, the word is shown along with several word approximations your child may use from the easiest to the correct production of the word. The therapy manual details the Kaufman Method of "successive approximations" to teach children the easiest way of saying words, while continually progressing toward correct speech. The manual also provides many ideas for increasing sentence length and grammatical structures.
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"Soe down, Mommy. Big, big tuck right ner." These beautiful words came from the back seat as I passed a double tandem
semi on I-75. My 4-year-old daughter, Abigail, was straining to see the "big,
big tuck" from her car seat. Abigail is a delightful child. She is
bright, engaging, sensitive, creative and energetic. She loves pizza, slides, Ring around
the Rosie, her dog Bugsy, and, of course, "big,
big tucks!" She has big blue eyes, beautiful honey blonde hair and a smile
that melts us. Abigail also has Down syndrome and severe Childhood Apraxia of
Speech (CAS).
These new developments in Abby’s speech show significant
improvement and are heartwarming to her father and me. She is slowly, but
surely, gaining the tools that will eventually free her voice. There’s no question about it: having a child with Down syndrome, or a related disability, changes your life. Some of the changes are obvious, while others are subtle. For many parents, myself included, a prevalent result is to shift the focus of your knowledge and skills to help your child reach his potential within your community. Sometimes, this process results in a desire—sometimes a compelling
Abigail, however, can smell an agenda a mile away. Somehow, she knew they wanted her
to talk and interact. Just knowing this, makes it virtually impossible for her to
Diagnosing Childhood Apraxia of Speech
I have heard of too many parents who are given explanations for their child’s speech delay such as: