Caregivers/ Family

1. Share Key Information With Healthcare Providers

• Explain the patient’s communication style, sensory triggers, and calming strategies.

• Describe what the patient’s “baseline” behavior looks like so providers can recognize pain or distress.

• Provide a short written summary if the patient has difficulty speaking during appointments.

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2. Advocate for Sensory-Friendly Care

• Request quiet rooms, dimmed lights, or reduced waiting times when possible.

• Ask for step‑by‑step explanations before procedures to reduce anxiety.

• Bring comfort items (noise‑canceling headphones, weighted items, fidgets).

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3. Help With Predictability and Routine

• Prepare the patient ahead of time with visual schedules or social stories.

• Explain what will happen during appointments using simple, concrete language.

• Keep routines consistent on treatment days whenever possible.

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4. Support Decision-Making

• Break down treatment options into clear, manageable pieces.

• Help the patient express preferences, concerns, or fears.

• Ensure the patient’s voice is included, even if they communicate non‑verbally.

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5. Monitor Behavior and Health Changes

• Track reactions to medications, sensory overload, or emotional stress.

• Report changes to healthcare providers quickly, especially if the patient struggles to describe symptoms.

• Keep a log of sleep, appetite, pain levels, and mood.

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6. Provide Emotional Safety

• Stay present during procedures when allowed—familiar faces reduce anxiety.

• Use reassurance, predictable routines, and grounding techniques.

• Celebrate small victories to help the patient feel supported and understood.

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7. Coordinate With the Care Team

• Ask for clear instructions in writing.

• Request accommodations when needed—families are allowed to advocate.

• Encourage providers to use simple language and allow extra processing time.

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8. Take Care of Yourself Too

• Caregiving is emotionally demanding; rest and support help you stay effective.

• Seek support groups or counseling if needed.

• Share responsibilities with trusted family members when possible.