Global’s Webinar Series – May 2017

SPRING 2017

Multimodal Approach to Teaching Children with Down syndrome Speech and Language Skills

What You Need to Know



Kathleen Mays,
M.S., CCC-SLP


Speech and language skills can be a huge challenge for people with Down syndrome across their life span. All efforts should be made to utilize Evidence Based Practice (EBP) in approaches to therapy. A multimodal approach (including signing, visual/picture support, and Augmentative and Alternative Communication) was explored in a myth vs. fact format to empower parents, speech-language pathologists, and teachers with the tools needed to allow your children the means to communicate.

 


Overview:




Presentation: Click to Download 



 QUESTIONS & ANSWERS


1. Are there any specific strategies for adults with stuttering problems?

  • From the Stuttering Foundation website: http://www.stutteringhelp.org/downs-syndrome
    • People with Down’s syndrome may find some or all of these steps particularly difficult. Ideas may not be clearly formed; the language plan and/or the speech movement plan may not be well established; the actual process of speech may be a problem. As well as this, hearing loss, which is quite common in people with Down’s syndrome, makes learning and understanding language difficult. Also, the individual may lack the social awareness needed to know when or where it is appropriate to say what is wanted.
    • For all of us it is common to find that, as the pressure to speak and speak well builds, a breakdown in fluency may occur. Imagine that you are trying to plan what to say in a foreign language—one where you only know a few words! You are likely to have long pauses when you are thinking of words; you might start a word, realize it’s wrong and try another word; you may repeat a word a number of times while you are trying to plan the sentence. In fact you may appear very disfluent!
  • For a person with Down’s syndrome, wanting to convey messages through a system that does not always work perfectly may lead to:
    • Repeating whole words or parts of words while trying to think of the next bit of the sentence (it’s…it’s…it’s big).
    • Long pauses in the middle of the sentence when he or she can’t think of what to say next (it’s a………ball).
    • Pauses in unusual places in sentences, often followed by two or three words in a sudden rush that may be hard to understand (I’m going swim……min tomorrow). This stop- and start speech can be caused by problems in the language program or in the conversion of the language into a speech muscle program. The effect is as if the “bottled up” air is escaping from the lungs in a rather uncontrolled fashion. Fluent speech is dependent on a steady flow of air.
    • Emphasis being placed on the wrong word in a sentence or on the wrong part of the word. This may occur because the language program is not precisely planned or the control of movements of the speech muscles is not sufficiently well organized (I like to eat apples).
    • Some struggling to find the right speech sounds to start the word off (a…er…er.i…er…um…over there). Sometimes it may be difficult for the person to start the voice working leading to sudden high pitched or loud sounds.
    • Possible problems with hearing others and/or with noticing that what has been heard has not been understood. This may lead to hesitant and unsure speech and to communication between the person with Down’s syndrome and the listener breaking down.
  • It is possible that fluency depends on an equal balance between demands made on the language system and the abilities of the individual to meet these demands (3). Stuttering may occur when demands exceed one’s abilities.
  • These are just a few of the demands made upon speakers and the abilities that a speaker needs to have in order to manage well. There are many others that can be added.

Demands made on the child or adult

  • Expectations of parents or others for good speech or good behavior, etc.
  • Asking child or adult with language difficulties to say certain things
  • Child or adult’s desire to please
  • Need to communicate

Abilities of the child or adult

  • General ability to understand
  • Level of language ability
  • Hearing ability
  • Speech motor ability
  • Desire to communicate

 

Following on from the chart above, we can see how our aim is to
try to decrease demands and increase abilities.

  • How Can People with Down syndrome be helped?
    • Decreasing demands:
      • Give the person with Down’s syndrome plenty of time. Planning what to say and saying it may be slower than you might expect.
      • Take a slightly longer pause between what he or she has said and your reply—this slows the overall speed of the conversation down. Encourage the adult or child to also take longer pauses. This allows thinking time before speaking.
      • Try to avoid finishing sentences or saying what you think he or she might be trying to get across.
      • Speak a little slower yourself—this gives a model for the child or adult with Down’s syndrome to follow.
      • Try not to use too many long and complicated sentences.
      • Give positive encouragement for the message rather than the style of delivery.
    • Working to increase their abilities:
      • For children, helping the language to develop and the vocabulary to expand may reduce the amount of disfluency. Rhymes and jingles that have a strong rhythm and can be moved to or clapped out are particularly useful. However, it is important not to make too many demands for speech—this can have a negative effect.
      • Encouraging the use of sign language and other aids (such as pointing to pictures, etc.) reduces the pressure on children or adults who are disfluent and difficult to understand.
      • Encouraging the development of good social and communication skills (such as knowing when to speak and when not to speak, looking at people when talking to them, listening carefully, smiling and nodding, taking turns to speak) helps build confidence. Speaking is only a small part of communicating.
      • Most children with Down’s syndrome will be particularly disfluent while their language is developing and their vocabulary is expanding. The disfluencies may pass or reduce as they become better at planning and organizing their language. However, for some, language and speech may always be difficult.
      • As adults, a number of people with Down’s syndrome will be quite difficult to understand at times, and they may have bouts of disfluency varying from mild hesitancies to more severe struggling to get words out. The most important thing is that they should still feel that what they say has value and that others want to listen to them. Attempts to make people imitate sentences or practice speaking in different ways are unlikely to produce more fluent, clearer speech in the long run, and this might make them feel that the payoffs for speaking are not worth the effort.
    • Conclusion
      • Do talk about the problems of disfluency among yourselves and with people who can help. Don’t feel you cannot or must not say anything. By avoiding talking about the issue you could be making yourself and the person who has the problem feel worse about it.
    • References:
      • “Down’s Syndrome: Information for Journalists” Leaflet produced by the Down’s Syndrome Association
      • Shames G, Wiig E & Secord W (1994) Human Communication Disorders (4th edition) Macmillan
      • Starkweather W (1987) Fluency and Stuttering Prentice Hall

2. My sister is 50 and very independent. She speaks and communicates very independently. We are finding that her enunciation and clarity is poor and we are having difficulty understanding her. Speech therapy is an option but we aren’t sure what is the best suggestion, other than a hearing exam which we will obtain. Is there a group for older adults with Down syndrome?

  • You should certainly seek the expertise from a speech language pathologist. The model of therapy would most likely not be weekly visits, but more of a consultative model to provide support and guidance for strategies that would be beneficial.
  • I would suggest that functional phrases/sentences that are used within her work or home setting be written down and practiced (e.g., “Can I help you?” “What do I need to do today?” etc.). You could have someone record phrases that she is using throughout the day. These can be placed on index sized cards with a hole for a ring to keep them together.
  • Try video or audio recording her practicing the phrases/sentences and have an unfamiliar listener listen to the recordings to see if they can understand them.
  • To possibly assist in increasing volume, try searching for a “volume meter” app and have a target dB level to reach (35dB for a quiet voice to 70 dB for a conversational voice). I would first rule out there is not a physiological basis for her low volume before attempting this (from a speech language pathologist and an Ear, Nose and Throat (ENT) specialist).
  • Knowing that hearing is intact, by having an audiological evaluation, would rule out hearing as an obstacle.
  • Seek out adult services within your location through an Adult Down Syndrome Clinic, the Arc, a Down syndrome support group, or similar programs for activities and programs.

3. My son is 2 years and 9 months. He has minimal speech, but a lot of signs. He’ll start developmental preschool in August. Would you recommend trying PECS or should we hold on and push the school for an AAC device?

  • Begin the process with a visit to your Primary Care Physician (PCP). In order for insurance to pay for an AAC evaluation, you will need to have this referral (Medicaid will pay for this evaluation and if a Speech Generating Device (SGD) is recommended, it will also be paid for by Medicaid).
  • You should seek a Speech Language Pathologist (SLP) that specializes in Augmentative and Alternative Communication (AAC) for the AAC evaluation. Not all SLP’s specialize or are comfortable with AAC. If you are in a school system, there is typically a district level person that may be the AAC “expert”. They can go through the entire process the same way as an SLP in a clinic/private setting.
  • This AAC evaluation is a process and may take several hours or may be spread across several sessions (in order for Medicaid to pay for a device, the SLP will need to trial at least 3 devices. They do this so that they know the device is the most effective, beneficial, and individualized device for your child).
  • You can begin using pictures now (this summer) in your home setting. I suggest starting with preferred food choices. You can make these small pictures of items your child would request to eat (e.g., juice, milk, water, goldfish, grapes, broccoli, etc. and always place the written word on the picture as well). Put a magnet on the back of them and put them on the refrigerator within your child’s reach (or out of reach until the appropriate time). Always provide choices that you can live with (and you have on hand). You can begin with “What do you want to drink? Milk or water?” Your child can make their choice. Move on to choices of activities (e.g., toys, outdoor play, books, etc.).

4. Is it worth doing any sort of exercises involving the soft palate to increase intelligibility? What is your opinion regarding the use of talk tools in therapy? Is it more beneficial at a specific age?

    • This is a very controversial subject in the field of speech language pathology. I would defer back to the Evidence-Based Practice (EBP) triangle on slide 5 of the Webinar presentation. As a licensed and practicing speech language pathologist (SLP) operating under the American Speech-Language-Hearing Association’s certification, I operate utilizing the principles of EBP.
    • Let’s look at the 3 areas of support for the triangle:
      1) Scientific evidence is one of the triangles base. “Although often used by many SLPs, the legitimate professional literature refutes the appropriateness of Nonspeech Oral Motor Exercises (NSOME) for intervention to change speech sound production.” Lof & Watson (2008) and Watson & Lof (2008) – I will include as an attachment: “Parent-Friendly Information about Nonspeech Oral Motor Exercises” handout by Watson and Lof (2011).

      • Because speech (and feeding and swallowing) are so complex and fast moving, there is no way to isolate the movement and practice it. If you want to learn to talk – you should practice talking. If you want to learn to eat – you should practice eating. There are strategies and techniques that will help facilitate practice in both areas that are evidence based.
    • 2) The second base is clinical expertise. Utilize the experience and knowledge of your SLP. In Libby Kumin’s “Resource Guide to Oral Motor Skill Difficulties in Children with Down Syndrome”, she mentions oral motor treatment may:
      • Help children develop awareness of the mouth and the speech articulators,
      • Help children learn movements that are needed for speech sounds,
      • Help serve as a warm-up exercise at the beginning of therapy sessions.
      • “Non-speech tasks should be phased out as the focus of therapy as soon as the child is able to make speech sounds.” I will include as an attachment: “Resource Guide to Oral Motor Skill Difficulties in Children with Down Syndrome” Kumin
    • 3) The third base is client/patient/caregiver perspective, including interest, values, needs, and choices of the individuals we serve.
      • Certainly, listening to what parent’s interest, values, needs and choices are equally important. If a parent chooses to utilize NSOME techniques, just know all SLPs may not have specific training (Talk Tools is a specific training like PECS is a specific training – therapist should be trained in the theory, assessment, and treatment, etc., before providing this as an approach in therapy) and all may not support the use because of the lack of evidence.
      • I believe I answered a similar question during the webinar, but also remember, NSOME techniques will not harm your child, it should just be a minimal part of your child’s therapy approach. As with any non-evidence based approach, do not put your family in a situation where the therapy you are providing places you in a financial hardship.

5. I am hoping to learn about intervention and parent coaching specifically for SLPs working with 1-5 year olds with Down syndrome. Any suggestions of what might be distinct for DS language goals?

  • These seem to be coming from professionals, either Special Education Teachers or SLPs. I will refer you back to the references and resource list provided with this webinar. Some of my favorites are:
    • Kumin, Libby (2012). Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals.
    • Chamberlain, C. & Strode R. (1999). The Source for Down Syndrome
    • For the young ones – Signing Time videos – http://www.signingtime.com/
    • The See and Learn program, as many children with Down syndrome, learn well through visually based materials. Consider using the Down Syndrome Education USA website for additional resources and support: https://www.seeandlearn.org/en-us/ and their See and Learn Speech programs: https://www.seeandlearn.org/en-us/speech/ This is the work of Sue Buckley, who is another fabulous reference
    • Look through the names of those researcher in the reference list, begin reading those articles to understand the needs of children with Down syndrome.
    • The Penn State website on Slide 25 of the Webinar PowerPoint is a very powerful representation of the possibilities with AAC, Success stories: http://aackids.psu.edu/index.php/page/show/id/3/index.html

6. Would you recommend making our own PECS book or is there somewhere online where we can buy one?

  • There are commercially available materials through the PECS website: http://www.pecsusa.com/store/ however, talk with your child’s SLP and Special Education teacher, there are certainly very creative ways to make useful tools without the expense.
  • Defer back to question #4 & #5 for possible suggestions on how to start with pictures.

7. Any recommendations on AAC devices and/or systems that might help a child with articulation problems establish a topic before they begin speaking? We can understand my child once we know what she’s speaking about, but get lost is she initiates and we don’t know what the topic is.

  • I do not have a specific app to address this.
  • I would suggest starting with something as simple as starting the conversation with: “I would like to tell you about…
    • Something new…
    • Something that happened at school…
    • Something I heard…
    • Something I saw…
    • Something I read…
    • Something my friend told me…
  • Come up with your own starters, based on how your child begins conversations. Start paying attention to how they introduce topics.
  • These could be written down and referenced at the beginning of a conversation.
  • By introducing the topic first, or at least providing a reference, it may become easier.
  • If you are still having difficulties, have your child attempt to spell part of the word (at least the word you are having difficulty understanding). One of my recent patients, used his phone and would text me (during therapy) words that I was having difficulty understanding.
  • General rules of conversation:
    • Eliminate distractions when discussing important or complex information. Distractions such as the TV or others talking can make it more difficult for your child to initiate, follow and understand what is being said.
    • To help increase understanding of a conversation, pause between sentences, keep sentences short, and reword/rephrase if you sense confusion.
    • Sometimes your child may assume you know more than you do. For example, they may begin talking about someone without telling you who he or she is. When this happens, stop your child and ask, “Who is _______? I don’t know him.” This will gradually help your child realize you need more information.
    • Social skills must be taught in order to develop. Make positive comments about the social behavior that you would like to increase, e.g., “I like the way you told me what you were talking about first” or “I liked how you looked at me when you were talking to me.”
    • Use role-playing to help your child learn how to engage in friendships and more complex social interactions. Breakdowns in your child’s interactions during the day can be used as the basis for role-playing situations. Provide your child with specific training in what to say, how to say it, and when to say it. If you are having difficulty understanding your child, you can be sure that others are not always understanding them as well.

8. What are some best practices to address consonant production at the ends of words?

  • I would ensure your child has had a recent audiological evaluation to rule out a high frequency hearing loss. Many of our ending sounds in words are high frequency sounds (e.g., -s, -‘s, -th, -f). I will include as an attachment “The Speech Banana” as a visual representation of how hearing loss may affect speech sound production. https://www.agbell.org/professionals/auditory-functioning/the-speech-banana/
  • As with most of my approach to intelligibility, I target meaningful and functional words for practice. I always have a visual and written representation of the target words (fade visual as your child learns to read words).
    • Target words include: Names (own name, family member’s names, classmate’s names, teacher’s names, academic subject area vocabulary, literacy vocabulary (characters names, setting, new vocabulary, etc.), holiday vocabulary, your child’s interest vocabulary (e.g., if they like dinosaurs, can they be understood as they name the different dinosaurs or if they like Disney Princesses, can they be understood as they name their favorite princesses?).
    • When your child can visually see what the ending sound in a word is, they have a visual reference as to how the word should end.
    • I would do an audio or video recording of your child practicing target words. As they listen, do they hear when they do not produce the final consonant?

9. My son is a teenager. He could benefit from an assistive device. He would prefer using an IPad. The problem is that the IPad becomes a distraction at school. Games, online videos and other non-educational uses become an issue and the IPad gets sent home and suggested it stays there. Any suggestions?

  • I would begin by referencing question #4 and #5 – as to the initiation of an AAC evaluation.
  • When insurance pays for a device, you receive what is called a dedicated device – it’s only purpose is for communication. It may be slightly heavier than tablet/iPad because it will have a voice output system on the back of the device.
  • Sounds like the school might not have had “buy-in” to the use of the device. If they initiate or are a collaborative part of the process they will tend to ensure the successful implementation of the use of a SGD.
  • That being said, the iPad does have a Guided Access feature.
    • Use Guided Access with iPhone, iPad, and iPod touch. Guided Access helps you to stay focused on a task while using your iPhone, iPad or iPod touch. Guided Access limits your device to a single app and lets you control which app features are available.
  • You can use Guided Access to:
    • Temporarily restrict your iOS device to a single app
    • Disable areas of the screen that aren’t relevant to a task, or areas where an accidental gesture might cause a distraction
    • Disable the hardware buttons
  • Set up Guided Access – Tap Settings > General > Accessibility > Guided Access to set up Guided Access.
  • This website had a good tutorial on use of Guided Access: https://www.imore.com/how-use-guided-access-iphone-and-ipad

Additional Resources:

Down Syndrome & Stuttering: Click to Download 

Parent-Friendly Info about Nonspeech Oral Motor
Exercises:
 
Click to Download 

Resource Guide to Oral Motor Skill Difficulties in
Children with Down syndrome:
 
Click to Download 

The Speech Banana: Click to Download