Section 9: Collaboration, Advocacy, and Long-Term Planning

You are your child’s first interpreter, first advocate, and forever anchor.

For Deaf+ families, no two paths look the same — but the one constant is the need to navigate broken systems.

You’re not just raising a child. You’re managing:

• Medical systems

• School bureaucracies

• Therapy teams

• Cultural misunderstandings

• And your own energy as a human

The systems weren’t built with your child in mind. But with knowledge, allies, and strategy — we rebuild them together.

Building the Team Around Your Child

You deserve providers who:

✅ Use sign language ✅ Prioritize regulation over compliance ✅ View your child as whole, not broken ✅ Involve you in planning ✅ Listen, adapt, and educate themselves

Red flags: ❌ “We don’t usually get Deaf kids.” ❌ “They’ll talk if we just remove the sign.” ❌ “Let’s wait and see.” ❌ “He’s just stubborn.” ❌ “We’ve never done that before.”

Keep a “red flag” list and trust your gut.

IEP and School Meetings: How to Prepare

🎯 Before the meeting:

• Write down goals that matter to YOU

• Bring your own communication profile or visual supports

• Ask for an agenda in advance

• Request an ASL-fluent interpreter if you or your child needs one

🗣 During the meeting:

• Use visuals to explain home behavior

• Speak up about language deprivation and trauma effects

• Ask: “How are we ensuring access in their language of thought?”

📝 After the meeting:

• Request a copy of the IEP in writing

• Write a parent letter summarizing your understanding

• Clarify roles: Who’s doing what? How often? How will it be shared?

How to Advocate for Interpreters and Access

📌 At the doctor’s office or therapy center:

• Ask for a qualified sign language interpreter

• The provider is responsible for arranging and paying

• If they refuse, cite the ADA and Section 504

📌 At school:

• Interpreters must be available for meetings, services, AND the child’s access

• ASL should be modeled, not just translated

💡 Not all interpreters are equal. You can ask:

• Do they have experience with children?

• Are they certified in educational or medical interpreting?

• Do they reflect Deaf culture norms (eye contact, signing pace)?

If you’re denied access:

• Document everything

• Request a written explanation

• File a grievance or contact your state’s disability rights agency

Planning for the Future — Bit by Bit

You don’t need to have it all figured out. But start thinking about:

Age	Goal	Supports
0–3	Language foundation	Early Intervention, Deaf mentorship
3–5	Routine + regulation	Visual schedule, therapy play, sign immersion
6–9	Independence + self-expression	AAC, body awareness, school advocacy
10–13	Self-advocacy + decision making	Choice boards, self-reg cues, identity building
14+	Transition planning	Vocational programs, supported decision making

You’re Not Doing This Alone

We built this guide to share what we’ve learned — as parents, educators, and Deaf+ community members.

You are the most important part of your child’s team. Even when the systems get it wrong, you are right to demand access. Even when others dismiss your concerns, you are right to keep asking.

Together, we’re not just raising children. We’re raising awareness, raising expectations, and raising the bar.