Communication Development

Communication difficulties are common in individuals with Down syndrome. Charlie's Clinic is committed in supporting total communication for all patients

You can read more about communication development in children with Down syndrome in the following resources:

Boston Children's Hospital Down syndrome program - Communication Guide

National Down Syndrome Society - Speech and Language

Lecture on communication development in children with Down syndrome

Speech Therapy

Speech therapy is fundamental in supporting a child's speech and communication development

There are a few ways of obtaining speech therapy services

From 0-3 years old:

• You can receive speech therapy through your medical insurance

• If your insurance does not cover the service, or if the insurance cannot provide an adequate network leading to excessive wait times, the Regional Center can provide this service

3 years and up:

• You can receive speech therapy as part of your IEP, paid for by the school district. Your IEP needs to have speech and communication goals that justify the need for speech therapy services

• You can ALSO receive speech therapy through your insurance. If your insurance does not have anyone in network, you can request a single case agreement with a provider who is not in network

Sign Language and Total Communication

Charlie's Clinic, collaborated with Dr Bettina Larroudé , Ed,D, CCC- SLP  (a speech therapist with over two decades of experience working with children with Down syndrome), and Raquel Ramos, RN, BSN, PHN (a nurse and the parent of a lovely young man with Down syndrome), to create a total communication toolkit for families to use as a resource. 

You can access the toolkit below. We recommend printing it out and laminating it, to make it easy to use. It includes signs, pictures, and words, to provide your child with numerous options for communication

Learn Sign Language! Total Communication toolkit

Sign Language Videos

Simple Signing Rules 

Oral Motor Skills

• Oral-motor skills: Ability to use the lips, cheeks, jaw, tongue, and palate. Includes oral exploration, feeding, and sound play 

• Feeding: Gathering food and preparing to suck, chew, and swallow it 

• Speech: Communicating verbally Consists of articulation, voice, and fluency 

Notes from Heather Vukelich's talk on Oral Motor Function and Speech Development

Orthodontics for Orofacial Myofunctional Disorder

Low muscle tone and orofacial muscle weakness can lead to improper development of the jaw and palate in children with Down syndrome. Over time, this impacts speech clarity and speech production. Orthodontics and palate expansion can support proper development of the jaw, maxilla, palate and airway structures. 

What Is Apraxia?

Historically Childhood Verbal Apraxia was not identified or treated in children with Down Syndrome (Kumin, 2006). The original researchers who defined ‘Apraxia of Speech’ in children included only children with IQ scores within the normal range in their research sample (thus excluding children with Down Syndrome). This meant that children with Down Syndrome were not assessed or treated for Childhood Verbal Apraxia. However, recent research (Kumin & Adams, 2000 and Kumin, 2006) has documented that symptoms of Childhood Verbal Apraxia can be found in children with Down Syndrome. In a recent American Speech-Language research study, the researcher has found that 15% of a sample of 1620 children with Down Syndrome had Childhood Verbal Dyspraxia. She also found that a diagnosis of Oral-Motor Difficulty was more frequently given (about 60.2% of the 1620 children surveyed) than a diagnosis of Childhood Verbal Apraxia.

Apraxia is different from dysarthria. Dysarthria is due to weakness and presents as difficulty with intelligibility. Ben absolutely has dysarthria. However, Ben also shows a wide gap between his receptive and expressive language, and a wide gap between his gestural language and sign language vs. His spoken language, which is indicative of a motor planning issue - ie apraxia.

Read more here:

Augmentative and Alternative Communication

You may have seen someone write in a notebook to answer a question. Maybe you have seen people using sign language or other gestures. You may have seen someone push buttons on a computer that speaks for them. These are all forms of augmentative and alternative communication, or AAC. 

AAC includes all of the ways we share our ideas and feelings without talking. We all use forms of AAC every day. You use AAC when you use facial expressions or gestures instead of talking. You use AAC when you write a note and pass it to a friend or coworker. We may not realize how often we communicate without talking.  

People with severe speech or language problems may need AAC to help them communicate. Some may use it all of the time. Others may say some words but use AAC for longer sentences or with people they don’t know well. AAC can help in school, at work, and when talking with friends and family.  

Types of AAC 

Do you or your loved one have difficulty talking? There are options that might help. There are two main types of AAC—unaided systems and aided systems. You may use one or both types. Most people who use AAC use a combination of AAC types to communicate.  

Unaided Systems  

You do not need anything but your own body to use unaided systems. These include gestures, body language, facial expressions, and sign language.  

Aided Systems 

An aided system uses some sort of tool or device. There are two types of aided systems—basic and high-tech. A pen and paper is a basic aided system. Pointing to letters, words, or pictures on a board is a basic aided system. Touching letters or pictures on a computer screen that speaks for you is a high-tech aided system. Some of these speech-generating devices, or SGDs, can speak in different languages.

Research and studies over the last two decades have shown that AAC helps children with Down syndrome develop better communication skills than their peers who are not exposed to AAC.

Further, research also shows that early exposure of children with complex communication needs (CCN) to AAC minimizes the potential for continued delay that these children face with developing language. In a 2010 study (Drager, Light and McNaughton, 2010), it was found that AAC intervention can have a positive effect on functional communication skills, challenging behavior, language development (both receptive and expressive), and speech production. Unlike other studies that observed the effect of AAC on children between the age of 3 and 5, this paper specifically focused on understanding the effect of AAC exposure on children under the age of 3. The study recommends AAC intervention by the age of 6-9 months when a disability with the risk of communication risk is identified. That said, many caregivers still have doubts about using AAC. We looked at some of these doubts on using AAC for children with Down syndrome and asked: are they real, or are they myths?

Common myths about using AAC for children with Down syndrome:

1. Fear of natural speech development being impeded

The fear of AAC intervention becoming an impediment to speech is quite widespread. However, several studies (such as Millar, Light, and Schlosser) show that AAC does not cause impediment in the development of natural speech in individuals with developmental disabilities. On the contrary, children with exposure to AAC learn to use multiple modes of communication, unlike children with no exposure to AAC.

2. Fear that social skills won’t develop

Another common fear with using AAC intervention is regarding the development of social skills. How will the child learn social skills using AAC? This fear too is ill-founded — AAC as a multi-pronged model of communication uses modeling, practice and feedback to teach the child different language skills as well as social skills that are required to engage with people (for example, turn taking). Multiple studies have shown this to be effective specifically for children with Down syndrome, including the study by the Janice Light & Kathyrn Drager in 2010.

3. Concern that AAC cannot help tackle challenging behavior

Sometimes, caregivers question the possibility of resolving challenging behaviors using AAC. On the contrary, though, device-based AAC systems can especially be useful in helping with handling challenging behavior, by working on Functional Communication Training (FCT) with children. For example, caregivers may model with the child on using a specific AAC switch or symbol, to replace a challenging behavior like hitting his head on the wall to call someone. Studies show that such methods have been effective with most children observed.

4. Concern that the child will be unable to communicate when the AAC device is unavailable

With advancements in technology, electronic device based AAC systems have become the order of the day. This often makes caregivers wonder if their child will be left stranded without any means of communication when he or she does not have access to the electronic device. Will the child’s communication become device-dependent? If AAC is properly introduced, this is not a major concern. There are many different types of AAC systems, including unaided and aided systems. While unaided systems usually include signs and gestures, aided systems include picture boards, communication books and electronic devices. If a child has no access to an electronic device based AAC system, and if they have been properly trained to use multiple modes of communication, they will not be left stranded: unaided systems, or other aided systems with similar visuals as the child’s device, may be used to communicate with the child.

In our experience, we have heard a lot of success stories of children with Down Syndrome using AAC. 

References:

1. Effects of AAC intervention on communication and language for young children with complex communication needs by Kathryn Drager, Janice Light and David McNaughton, (https://pdfs.semanticscholar.org/4fde/36329edf21ce59bf0afb2a0f7adb10ff00cf.pdf)

2. Effect of early AAC intervention for children with Down Syndrome by Janice Light and Kathryn Drager  (http://aac-rerc.psu.edu/_userfiles/file/Light%20ASHA%202010%20%20AAC%20and%20children%20with%20Down%20Syndrome.pdf)

3. Millar, D. C., Light, J. C., & Schlosser, R. W. (2006). The impact of augmentative and alternative communication intervention on the speech production of individuals with developmental disabilities (Journal of Speech, Language, and Hearing Research, 49, 248-264.)

The Down Syndrome Connection of the Bay Area has a whole page devoted to AAC on their site. It includes multiple presentations on AAC, as well as information on how to access their lending library

Learn more about AAC from the DSCBA here

Programs in the area that support AAC

The Silicon Valley Independent Living Center can provide loaner equipment for AAC

The Vision Options program connects Californians with speech language disabilities to iPads with speech apps.

Learn more about the Vision Options program here 

For more information, you can contact Joe Escalante at  joee@svilc.org.

The Center for Accessible Technology providers 30 minute free consultations and can be vendorized by the Regional Center to do full assessments. Check out the Center for Accessible technology here

Get Started with Picture Communication

Research and Resources to Support the Use of Augmentative and Alternative Communication

Presentation on AAC from the 2021 DSMIG Symposium:

https://dsmig-usa.org/resources/Symposium%202021/2021%20Handouts/Augmentative%20and%20Alternative%20Communication.pdf

Communication Bill of Rights: 

https://www.asha.org/siteassets/uploadedFiles/NJC-Communication-Bill-Rights.pdf

Myths about AAC in I/DD:

https://www.asha.org/njc/myths-about-adult-communicators-with-severe-disabilities/

Evidence-Based Practice Resources

• International Society for Augmentative and Alternative

Communication (ISAAC): https://isaac-online.org/english/home/

• United States Society for Augmentative and Alternative Communication (USSAAC): https://ussaac.org/

• Northwest Augmentative Communication Society:

https://www.nwacs.info/mission-vision-values

• American Speech-Language-Hearing Association (ASHA) Practice Portal for AAC: 

https://www.asha.org/practice-portal/professional-issues/augmentative-and-alternative-communication/

• Exploring Cultural Responsiveness: Guided Scenarios for Communication Sciences and Disorders (CSD) Professionals (2020). ASHA Press.

Music Therapy

"Music Therapy is the planned, programmatic use of music to restore, maintain and improve emotional, mental and physiologic health and well being. Through singing, playing instruments, listening to music, songwriting, discussion of lyrics, improvisation, moving to music and music-imagery exercises, the music therapist facilitates improved communication and motor skills, social interaction and emotional health.

Singing and playing musical instruments enhances muscle control. For participants who cannot form sentences, songs provide a context to interact with others and build communication skills. This interaction increases self-esteem and independence. In addition, many clients find — through music — a means of expression previously untapped."

- Maya's Music Therapy Fund

Rosannah Hayden Word  of the Week

Rosannah Hayden, MS CCC-SLP, is a wonderful speech therapist from Rincon Valley Partnership School District

She has been making handouts for a "word of the week", to really focus on a different word each week in a multi-modal fashion

She has graciously shared her resources with our clinic! Check it out!

On/Off

Who

Make

Where

He/She