NARBE House's Guide and Lessons Learned

Our family's journey building custom AAC solutions for Ben - principles, lessons, and practical guidance

Disclaimer and Important Notes

This guide provides general information for families and builders exploring custom AAC solutions. It is not medical, therapeutic, or legal advice. Treat it as a starting point. These tools work for Ben, and we release them for others to try. We hope they help. Expect to customize.


Consult qualified professionals (doctors, therapists, assistive technology specialists) before making changes that affect health, mobility, or safety. Test thoroughly before daily use. Respect consent and privacy. The person using AAC should help decide about their system.

Chapter 1: Introduction — Why Custom AAC Matters

What is AAC?

Augmentative and Alternative Communication includes any tool that helps someone communicate when speech alone is unreliable.

Why custom?

Off-the-shelf systems can be costly, slow to obtain, and designed for average users. Personalization drives motivation and use. We build from the person outward.

Success looks like

Small wins: intentional presses, choices made, yes or no answers, typed words, independent play, smiles during use.

Guiding values

Start simple, build on reliable movement, respect comfort, personalize, stay flexible, celebrate progress.

3-point start

  • Observe and note reliable movements and best times of day
  • Try "paper buttons" or simple digital ones to test access
  • Review what's working and what's preferred

Budget rough-in

Paper and markers under $10. Single button $20 to $60. DIY button $20 to $30. Basic mounts $10 to $30.

Starter plan for the first week

  • Day 1 to 2: Observe and confirm one reliable movement
  • Day 3: Set up yes and no with paper or a basic app
  • Day 4: Add two fun choices the person cares about
  • Day 5: Adjust for comfort and timing
  • Day 6: Add sound or speech feedback
  • Day 7: Review what worked and decide the next goal

Chapter 2: Ben's Story — Motivation First

Ben is nonverbal and quadriplegic due to TUBB4A-related leukodystrophy. He once spoke and typed but lost those abilities. He relied on head turns for yes or no.

Early AAC attempts stalled because devices felt sterile and unmotivating. He stopped initiating communication.

The breakthrough

  1. Map two head movements to buttons (left = no, right = yes)
  2. Build a custom app with personal phrases and voice clips
  3. Use AI to create simple games and full keyboard access

Today

Ben plays games, picks shows, and communicates with a scanning keyboard and predictive text.

Lesson: Motivation and personalization drive use. Without personal meaning, tools sit idle.

Chapter 3: Understand the Individual

Observation goals

  • Find reliable movement that is repeatable, intentional, and painless
  • Understand comfort and fatigue patterns and the best times of day
  • Identify motivation triggers

One reliable movement is enough for scanning. The computer highlights options. The user selects.

Comfort matters

Posture and positioning reduce errors and extend sessions. Watch for red skin, accuracy drops, or signs of strain.

Document findings

Create a simple one-page profile. This will guide decisions about hardware, layout, and timing.

Chapter 4: Communication Pathways

The communication ladder

  • Level 1: Cause and Effect
  • Level 2: Choice-Making
  • Level 3: Symbol-Based
  • Level 4: Hybrid
  • Level 5: Spelling or Text

People can skip levels. If literacy is present, jump to text. Motivation beats assumptions.

Growth path

Yes or no → phrase board → expanded board → entertainment controls → keyboard → predictive text.

Chapter 5: Technology Tiers

Low-tech ($0 to $20)

Printed cards, laminated grids, paper boards. Good for testing and backup.

Mid-tech ($20 to $200)

Single or dual-button communicators, switch-adapted toys with audio feedback.

High-tech ($200 to $15,000+)

iPad AAC apps, custom scanning software, dedicated AAC devices.

Rule: Start at the lowest level that meets current needs and builds motivation. Add complexity slowly.

Chapter 6: Input Access and Mounting

Match movement to hardware

  • Head turn → mounted switches (for example, Orby)
  • Finger or hand → large button switch
  • Foot → pedal switch
  • Breath → sip and puff
  • Eyes → eye tracker or webcam-based tracker
  • Head or face cues → camera tracking tools
  • Muscle signal → EMG sensor

Key principle: One reliable, comfortable movement is enough.

Mounting

Place the device at a natural resting position. Small changes can greatly improve accuracy.

Safety notes

  • Avoid straps or pressure on the neck
  • Check skin under mounts and pads
  • Secure and tidy cables to prevent pulls or falls

Chapter 7: Design for Vision, Sensory, and Motivation

Visual principles

Large buttons, high contrast, consistent color cues, minimal clutter.

Vision support

  • Low vision → larger buttons and high contrast
  • Color blindness → pair colors with text or shapes
  • Light sensitivity → dark mode and reduced glare

Hearing support

Text-to-speech is strongly recommended for scanning and selection so the user can confirm what is highlighted and chosen.

Motivation

Use favorite characters, humor, independence goals, and social connection. Make it feel personal, not clinical.

Chapter 8: Build With AI — The Vibe Coding Workflow

Why AI helps

Tools like ChatGPT, Claude, and Gemini let families build custom AAC in hours or days.

Vibe Coding cycle

  • Describe clearly
  • Generate code or designs with AI
  • Test with the person right away
  • Refine based on what you see
  • Repeat often

Ben's early sequence

  1. Two-button yes or no app
  2. Simple phrase board
  3. Entertainment controls
  4. First custom game
  5. Scanning keyboard

Helpful tools

  • ChatGPT, Claude, Gemini for ideas and code
  • GitHub Copilot or Cursor for code completion

Sample prompts

"Create a Python app with two big buttons: Yes (green) and No (red). When pressed, speak the word."

"Add a memory matching game with six cards. Play a sound when a pair is found."

"Make buttons larger with rounded corners and a dark background."

Tips

  • Be specific and break work into small steps
  • Ask AI to explain any code
  • Keep backups of working versions
  • Test before daily use
  • Verify code before running

Chapter 9: Core AAC Skills — Literacy and Choice-Making

Literacy path

  • Single letter sounds (start with lowercase and short vowels)
  • Blend 2 to 3 letters into words
  • High-frequency sight words
  • Multi-letter sounds and endings
  • Compound words and complex patterns
  • Reading comprehension and writing

Daily shared reading

Aim for up to 60 to 90 minutes across the day in short chunks. Keep it fun and interactive. Combine reading and writing.

Build comprehension

  • Start simple: who, what, where
  • Expand: feelings, categories, cause and effect
  • Advance: author intent, alternatives, perspective writing

Choice-making for independence

  • Start with concrete choices you can show
  • Move to recognizable but abstract choices
  • Include meaningful decisions about goals and health topics

Partner-assisted scanning

  1. Establish a consistent yes or no
  2. Prepare a short list of up to five choices
  3. Announce once, then scan with long pauses
  4. Offer a "none of the above" option
  5. Honor attempts and stay positive

Chapter 10: Comfort, Positioning, and Ergonomics

Three pillars

Posture support, stable mounting, and a good environment.

Functional comfort

Can the person access inputs without strain, see clearly, and hear feedback?

Adapt often

Adjust mounts, scan speed, and feedback as bodies and needs change.

Before, during, after

  • Before: Quick skin check, confirm device placement, test audio
  • During: Watch for fatigue, slow scanning if accuracy drops
  • After: Inspect equipment, clean contact points, note what worked

Stop and rest if you see pain, breath-holding, grimace, skin redness, or sudden accuracy loss.

Chapter 11: Build the Digital World

Three essential layers

  1. Core Communication: Keyboard with speech for full expression
  2. Independence: Volume, show or music controls, smart home
  3. Fun and Growth: Motivating games that build skills

Feature checklist inspired by the OpenAAC community

Vocabulary

  • Core words and pre-built sets as a starting point
  • Personalized words and names
  • Multiple grid sizes
  • Motor planning with consistent button spots
  • Optional auto-return to the home board

Display

  • Words with symbols, words-only, or symbols-only
  • Clear grid layout with links
  • High contrast option
  • Skin tone choices for people symbols
  • Non-grid layouts for special access needs

Customization

  • Add buttons with personal images
  • Upload custom symbols and photos
  • Rearrange for physical access patterns
  • Hide or show buttons to focus
  • Record personal audio
  • Adjustable grid size and spacing
  • Color coding by part of speech

Sentence box

  • Build sentences before speaking
  • Speak the entire sentence or the last word
  • Clear and backspace controls
  • Auto-clear option
  • Quick access phrases and saved favorites

Keyboard and spelling

  • Full alphabet
  • Word prediction that learns from history
  • Punctuation and capitalization

Scanning access

  • Row then column scanning
  • Select on press or on release, based on need
  • Auditory scanning
  • Hold-to-select timing
  • Region scanning and drill-down
  • Debounce or cooldown to prevent accidental hits

Audio feedback

  • Confirm every selection with speech or a sound

Data and backup

  • Export to open formats such as Open Board Format when possible
  • Offer offline use and simple backup steps

Chapter 12: Teaching, Daily Routines, and Caregiver Training

Three pillars

Consistency, motivation, caregiver support.

First sessions

Short and fun with no pressure.

Daily routine

Use real life: greetings, games, shows, bedtime messages.

Caregiver training

Placement and setup, troubleshooting, modeling AAC, patience.

Layer complexity slowly

Let each stage feel rewarding before moving on.

Track progress

Simple metrics: accurate presses, choices made, time engaged, smiles, new words used.

When to seek help

  • Pain, skin breakdown, or new positioning issues
  • Repeated device failures or access problems
  • Confusion about vocabulary layout or growth path

Chapter 13: Long-Term Sustainability

Four elements

  1. Maintenance: Clean daily, back up weekly, test monthly
  2. Growth: Plan for changes in strength, vision, posture, and interests
  3. Finances: Budget for repairs and upgrades, look for grants
  4. Knowledge: Document steps for new caregivers

Backup plan

Spare switches and cables, plus a secondary device if you can.

Legacy folder

USB with software, laminated instructions, short demo videos, and contacts.

Long-term functionality

  • Backwards-compatible updates
  • Works offline when needed
  • Data export to open formats
  • Cloud or removable backup options
  • Clear user documentation
  • Real-user beta testing
  • Cross-platform support where possible
  • Sync across devices

Many users keep older devices because they work. Plan for longevity so people are not stranded.

Chapter 14: Sharing Your Tools and Helping Others

Why share?

Every custom solution can inspire or help another family. When you build or adapt a tool, you are part of a growing community making technology more accessible for everyone.

How to share safely

  • Remove personal data, faces, or identifying photos from screenshots or code examples
  • Test your tool before sharing. Include simple setup notes or a short video demo
  • Make it clear if your tool is still experimental or meant for personal use

Ways to share

  • GitHub or personal website: Host code, spreadsheets, or templates. Add a short README explaining what it does and how to use it
  • NARBE Foundation or similar communities: Submit tools or games to be reviewed and possibly hosted on resource pages
  • Discord or online AAC forums: Post screenshots or ideas to spark collaboration
  • YouTube or social clips: Share short demos showing how the system works (without showing private medical details)
  • Guides and templates: Convert your working setups into downloadable spreadsheets, JSON layouts, or step-by-step how-tos others can adapt

What to include

  • Tool name and what it does
  • Required hardware (for example, one or two switches, tablet, or camera)
  • Input method (spacebar, enter, eye tracker, etc.)
  • Platform (Python, HTML5, Android, Windows)
  • Optional: a video clip showing it in action
  • License type (personal, open-source, or non-commercial use only)

Before sharing publicly

  • Always test for safety and reliability
  • Include a basic disclaimer that your tool is offered as-is
  • If you worked with AI tools, note that AI-generated code should be verified before use
  • If your tool is intended for someone's specific physical or cognitive needs, say so clearly

Join the movement

NARBE House and other community projects rely on people like you who try, build, and share. By uploading your tools, documenting your process, or even sharing your ideas, you help accelerate innovation for families everywhere.

Chapter 15: Bringing It All Together

AAC is cyclical — as needs change, revisit earlier steps. Adjust devices, update software, and refresh routines.

Real success — connection, independence, joy, and voice.

Regular checkups

Every 3 to 6 months, reassess comfort, positioning, motivation, and caregiver knowledge.

Caregiver self-care

Use breaks, support networks, and shared duties to prevent burnout.

Stay flexible

Back up weekly, celebrate milestones, keep what works, and be selective with new tools.

Glossary

  • AAC: Tools that support or replace natural speech
  • Scanning: Computer highlights options in sequence, user selects
  • Text-to-speech: Software that speaks written text aloud
  • Core words: Common words used across many contexts
  • Motor planning: Keeping button locations consistent to build memory
  • Debounce: Ignore rapid repeated inputs to prevent accidental selection

Key Takeaways

  1. Start simple and build step by step
  2. Motivation drives consistent use
  3. Personalization matters
  4. Comfort enables longer, better sessions
  5. One reliable movement is enough
  6. Speech feedback is strongly recommended for any scanning system
  7. AI tools make custom AAC possible for beginners
  8. Vibe coding supports rapid, real-world iteration
  9. Literacy and choice-making are core skills
  10. Plan for long-term support and sustainability
  11. Involve the person in every decision
  12. Plan for growth and emergencies
  13. Train multiple caregivers and document everything
  14. Celebrate every victory