Speech Development
Speech development varies widely among individuals with a chromosome 8p rearrangement, even among those with the same type of chromosomal change. While many individuals will develop spoken communication skills, others may rely on alternative and augmentative communication devices for effective expression.
In general, individuals with an inversion/duplication/deletion of chromosome 8p tend to experience more significant challenges with spoken language compared to those with a deletion or duplication alone. However, this is not always the case, as speech abilities can differ from one person to another. Continued longitudinal studies are necessary to gain a deeper understanding of how speech development is affected by chromosome 8p rearrangements and its relationship to the specific genes involved.
The Chromosome 8p Registry provides valuable insights into the communication abilities of individuals with different types of 8p rearrangements. The details below outline their ability to communicate using spoken syllables, words, or sentences, categorized by the specific type of 8p rearrangement:
8p Inversion/Duplication/Deletion
- 41% of heroes in the Chromosome 8p Registry report the ability to communicate with either spoken syllables, words or sentences.
Among these individuals:
- 39% spoke their first words between the ages of 1 – 2
- 54% spoke their first words between the age of 3 – 4
- 3.5% spoke their first words between the age of 5 – 6
- 3.5% have not yet spoken their first words.
8p Deletion
- 76% of heroes in the Chromosome 8p Registry report the ability to communicate with either spoken syllables, words or sentences.
Among these individuals:
- 60% spoke their first words between the ages of 1 – 2
- 36% spoke their first words between the age of 3 – 4
- 4% have not yet spoken their first words.
8p Duplication
- 42% of heroes in the Chromosome 8p Registry report the ability to communicate with either spoken syllables, words or sentences.
Among these individuals:
- 100% spoke their first words between the ages of 1 – 2
Due to the varying communication abilities among individuals with chromosome 8p rearrangements, it is recommended that all individuals be evaluated and treated by a licensed speech-language pathologist. Treatment will depend on the individual’s specific communication needs and may include one or a combination of the following:
- Traditional speech practices involving muscle strength, movement & speech
- Sign language
- Alternative and Augmentative Communication Devices
- Feeding Therapy
- Respiratory Therapy
Project 8p Foundation’s Share What Works Series: Lisa Brideson-Glynn M.S., C.C.C.
Oral Motor Series:
Speech development varies widely among individuals with a chromosome 8p rearrangement, even among those with the same type of chromosomal change. While many individuals will develop spoken communication skills, others may rely on alternative and augmentative communication devices for effective expression.
In general, individuals with an inversion/duplication/deletion of chromosome 8p tend to experience more significant challenges with spoken language compared to those with a deletion or duplication alone. However, this is not always the case, as speech abilities can differ from one person to another. Continued longitudinal studies are necessary to gain a deeper understanding of how speech development is affected by chromosome 8p rearrangements and its relationship to the specific genes involved.
8p Inversion/Duplication/Deletion
- 41% of heroes in the Chromosome 8p Registry report the ability to communicate with either spoken syllables, words or sentences. Among these individuals:
- 39% spoke their first words between the ages of 1 – 2
- 54% spoke their first words between the age of 3 – 4
- 3.5% spoke their first words between the age of 5 – 6
- 3.5% have not yet spoken their first words.
- 76% of heroes in the Chromosome 8p Registry report the ability to communicate with either spoken syllables, words or sentences. Among these individuals:
- 60% spoke their first words between the ages of 1 – 2
- 36% spoke their first words between the age of 3 – 4
- 4% have not yet spoken their first words.
- 42% of heroes in the Chromosome 8p Registry report the ability to communicate with either spoken syllables, words or sentences. Among these individuals:
- 100% spoke their first words between the ages of 1 – 2
Due to the varying communication abilities among individuals with chromosome 8p rearrangements, it is recommended that all individuals be evaluated and treated by a licensed speech-language pathologist. Treatment will depend on the individual’s specific communication needs and may include one or a combination of the following:
- Traditional speech practices involving muscle strength, movement & speech
- Sign language
- Alternative and Augmentative Communication Devices
- Feeding Therapy
- Respiratory Therapy
Project 8p Foundation’s Share What Works Series:
Lisa Brideson-Glynn M.S., C.C.C.
Oral Motor Series
Augmentative and Alternative Communication (AAC)
Augmentative and Alternative Communication (AAC) includes all the methods used to communicate besides verbal speech. Individuals of any age who have difficulty with speech or language can benefit from AAC. The term “augmentative” refers to techniques that supplement natural speech, while “alternative” indicates methods used in place of speech. Some people use AAC as a lifelong communication tool, while others may use it temporarily. Often, individuals use a combination of different AAC tools, as communication can involve multiple methods. An “AAC system” encompasses all the tools and techniques an individual uses to communicate effectively.1
AAC comes in various forms, which can be categorized as no-tech, low-tech, or high-tech:
No-Tech
Using gestures or facial expressions to communicate:
- Pointing, nodding, or using simple hand signals to convey meaning
- Using body movements, like shrugging or crossing arms, to communicate
- Smiling, frowning, or other expressions to show emotions or responses.
- Using eye movements to indicate choices or answers
- Using sign language to represent words or phrases
Low-Tech Options:
Using communication tools that are not electronic:
- Communication Books: Personalized books with pages of pictures, symbols, words, or phrases. The individual can point to the images or words to convey their thoughts, needs, or emotions. Example – Pragmatic Organization Dynamic Display (PODD)
- Communication Boards: Boards with pictures, symbols, letters, or words that the individual can point to in order to express their thoughts or needs.
- Picture Exchange Communication System (PECS): A system where individuals use picture cards to build sentences or convey their needs by handing them to a communication partner.
- Object Symbols: Real objects (e.g., a spoon to indicate mealtime) that are used to represent specific activities or items.
- Alphabet Boards: Boards with letters and numbers that allow individuals to spell out words or sentences by pointing.
- Writing Tools: Using paper and pencil, dry-erase boards, or magnetic boards to write down messages.
- Spelling out words by pointing to letters
- Pointing to images, symbols, or printed words
- Picture Exchange Communication System (PECS)
- Pragmatic Organization Dynamic Display (PODD)
High-Tech Options:
Using AAC Apps on Tablets or iPads:
These apps are designed to facilitate communication and can be tailored to the individual’s needs:
- PRC Saltillo – TouchChat: A customizable communication app with a variety of symbol-based vocabulary options.
- Tobii Dynavox: Offers several apps designed to support different communication needs, including symbol-based communication and text-to-speech.
- Proloquo2Go: A versatile AAC app that provides symbols and text-based communication options, offering an extensive vocabulary for users with varying communication needs.
- Go Talk: A simple, user-friendly app that allows individuals to communicate using symbols, images, and recorded speech.
- LAMP (Language Acquisition through Motor Planning): An app designed to promote language development by pairing consistent motor plans with symbols, aiding individuals in developing expressive communication.
Dedicated Communication Devices:
These are standalone devices specifically designed for communication, offering more robust features:
- Tobii Dynavox Devices: Provides a range of dedicated devices, each equipped with advanced speech-generating capabilities tailored to various user needs. Some devices induce eye tracking tools to assist with communication.
- PRC-Saltillo Devices: Offers multiple high-tech AAC devices, including touch-screen tablets with specialized communication software and accessories for different accessibility needs.
*This is not a complete list of all AAC apps/devices, but instead a selection of those known to be used within the 8p community.
Many individuals with Chromosome 8p rearrangements benefit significantly from using various types of Augmentative and Alternative Communication (AAC) technology. It is important to understand that there is no “one-size-fits-all” solution; often, a combination of no-tech, low-tech, and high-tech AAC tools is necessary to meet the individual’s unique communication needs.
The key principle to keep in mind is that every individual has the capacity to communicate. Healthcare providers and families should collaborate to identify the most effective strategies and tools that allow the individual to express themselves. Finding the right mix of AAC methods can greatly enhance the individual’s ability to communicate and participate in everyday interactions.
American Speech-Language-Hearing Association (ASHA). Augmentative and Alternative Communication (AAC).
https://www.asha.org/public/speech/disorders/aac/
Colorado Children’s Hospital offers several AAC tools:
- Talking With Technology Camp – A program offering hands-on AAC learning experiences.
- AAC Video Series:
An Introduction to Augmentative and Alternative Communication (AAC)- “AAC is a Journey” video – Learn about the levels of communication and the path to becoming an effective communication partner and AAC device user.
- “How We Communicate” video – Understand the different ways we communicate and how you can more effectively communicate with AAC device users.
- “Why We Communicate” video– Understanding the reasons we communicate, or “communication functions,” can help us look for body language that gives us clues and helps us communicate more effectively.
- “Vocabulary” video– Learn about “core” and “fringe” words and how we can program certain phrases into AAC devices to better communicate.
- “Interests and Motivation” video – Learn what compels your child to want to communicate and why a small difference in motivation can be a big difference in communication.
Communication Partners and Strategies
- “Communication Partners” video – Learn about the different communications partners that may be in your child’s life and how different communication partners can mean different levels of communication
- “Aided Language Stimulation and Modeling” video– Learn how this powerful communication strategy helps an AAC user learn to use their AAC system.
- “Wait Time” video– Learn about this communication partner strategy, how to successfully use it and how it helps an AAC user better compose their thoughts and communicate effectively and independently.
- “Sabotage” video– Learn about this communication partner strategy, how it can help you gather clues to better communicate with an AAC user and create language opportunities.
- “Open-ended Questions” video-Learn about this communication partner strategy and how to use it to encourage a broader level of communication with an AAC user.
Augmentative and Alternative Communication (AAC) includes all the methods used to communicate besides verbal speech. Individuals of any age who have difficulty with speech or language can benefit from AAC. The term “augmentative” refers to techniques that supplement natural speech, while “alternative” indicates methods used in place of speech. Some people use AAC as a lifelong communication tool, while others may use it temporarily. Often, individuals use a combination of different AAC tools, as communication can involve multiple methods. An “AAC system” encompasses all the tools and techniques an individual uses to communicate effectively.1
AAC comes in various forms, which can be categorized as no-tech, low-tech, or high-tech:
No-Tech
Using gestures or facial expressions to communicate:
- Pointing, nodding, or using simple hand signals to convey meaning
- Using body movements, like shrugging or crossing arms, to communicate
- Smiling, frowning, or other expressions to show emotions or responses.
- Using eye movements to indicate choices or answers
- Using sign language to represent words or phrases
Low-Tech Options:
Using communication tools that are not electronic:
- Communication Books: Personalized books with pages of pictures, symbols, words, or phrases. The individual can point to the images or words to convey their thoughts, needs, or emotions. Example – Pragmatic Organization Dynamic Display (PODD)
- Communication Boards: Boards with pictures, symbols, letters, or words that the individual can point to in order to express their thoughts or needs.
- Picture Exchange Communication System (PECS): A system where individuals use picture cards to build sentences or convey their needs by handing them to a communication partner.
- Object Symbols: Real objects (e.g., a spoon to indicate mealtime) that are used to represent specific activities or items.
- Alphabet Boards: Boards with letters and numbers that allow individuals to spell out words or sentences by pointing.
- Writing Tools: Using paper and pencil, dry-erase boards, or magnetic boards to write down messages.
- Spelling out words by pointing to letters
- Pointing to images, symbols, or printed words
- Picture Exchange Communication System (PECS)
- Pragmatic Organization Dynamic Display (PODD)
High-Tech Options:
Using AAC Apps on Tablets or iPads:
These apps are designed to facilitate communication and can be tailored to the individual’s needs:
- PRC Saltillo – TouchChat: A customizable communication app with a variety of symbol-based vocabulary options.
- Tobii Dynavox: Offers several apps designed to support different communication needs, including symbol-based communication and text-to-speech.
- Proloquo2Go: A versatile AAC app that provides symbols and text-based communication options, offering an extensive vocabulary for users with varying communication needs.
- Go Talk: A simple, user-friendly app that allows individuals to communicate using symbols, images, and recorded speech.
- LAMP (Language Acquisition through Motor Planning): An app designed to promote language development by pairing consistent motor plans with symbols, aiding individuals in developing expressive communication.
Dedicated Communication Devices:
These are standalone devices specifically designed for communication, offering more robust features:
- Tobii Dynavox Devices: Provides a range of dedicated devices, each equipped with advanced speech-generating capabilities tailored to various user needs. Some devices induce eye tracking tools to assist with communication.
- PRC-Saltillo Devices: Offers multiple high-tech AAC devices, including touch-screen tablets with specialized communication software and accessories for different accessibility needs.
*This is not a complete list of all AAC apps/devices, but instead a selection of those known to be used within the 8p community.
Many individuals with Chromosome 8p rearrangements benefit significantly from using various types of Augmentative and Alternative Communication (AAC) technology. It is important to understand that there is no “one-size-fits-all” solution; often, a combination of no-tech, low-tech, and high-tech AAC tools is necessary to meet the individual’s unique communication needs.
The key principle to keep in mind is that every individual has the capacity to communicate. Healthcare providers and families should collaborate to identify the most effective strategies and tools that allow the individual to express themselves. Finding the right mix of AAC methods can greatly enhance the individual’s ability to communicate and participate in everyday interactions.
American Speech-Language-Hearing Association (ASHA). Augmentative and Alternative Communication (AAC).
https://www.asha.org/public/speech/disorders/aac/
Colorado Children’s Hospital offers several AAC tools:
Talking With Technology Camp – A program offering hands-on AAC learning experiences.- AAC Video Series:
An Introduction to Augmentative and Alternative Communication (AAC)- “AAC is a Journey” video – Learn about the levels of communication and the path to becoming an effective communication partner and AAC device user.
- “How We Communicate” video – Understand the different ways we communicate and how you can more effectively communicate with AAC device users.
- “Why We Communicate” video– Understanding the reasons we communicate, or “communication functions,” can help us look for body language that gives us clues and helps us communicate more effectively.
- “Vocabulary” video– Learn about “core” and “fringe” words and how we can program certain phrases into AAC devices to better communicate.
- “Interests and Motivation” video – Learn what compels your child to want to communicate and why a small difference in motivation can be a big difference in communication.
Communication Partners and Strategies
- “Communication Partners” video – Learn about the different communications partners that may be in your child’s life and how different communication partners can mean different levels of communication
- “Aided Language Stimulation and Modeling” video– Learn how this powerful communication strategy helps an AAC user learn to use their AAC system.
- “Wait Time” video– Learn about this communication partner strategy, how to successfully use it and how it helps an AAC user better compose their thoughts and communicate effectively and independently.
- “Sabotage” video– Learn about this communication partner strategy, how it can help you gather clues to better communicate with an AAC user and create language opportunities.
- “Open-ended Questions” video-Learn about this communication partner strategy and how to use it to encourage a broader level of communication with an AAC user.
