Your Child Deserves a Seat at the Table: Rethinking Advocacy, Independence, and Disability

As parents, we spend a lot of time making decisions for our children.

We choose their schools.

We schedule their appointments.

We advocate for services.

We attend IEP meetings.

We ask questions.

We research therapies.

We communicate with teachers and providers.

We try to anticipate problems before they happen.

And when our child has a disability, there can be even more decisions to make.

What supports do they need?

What accommodations will help?

What communication approach should we use?

What educational setting is the right fit?

What will happen next?

The list can feel endless.

And because we love our children so deeply, our instinct is often to protect them, to make things easier, remove obstacles, and prevent them from experiencing the struggles we know they may encounter.

But during my recent conversation with Dr. Anne McIntosh on Parenthood Unscripted, we talked about a shift that I think is incredibly important:

What happens when we stop thinking only about what we can do FOR our children and start thinking about what we can do WITH them?

Our children are not problems to be fixed.

One of the most powerful themes throughout our conversation was the idea that disability doesn't automatically mean something about a child needs to be fixed.

Dr. McIntosh described her own evolution in thinking about deafness. She explained that she didn't always view deafness as a strength. Over time, however, she began to recognize the different perspectives, problem-solving abilities, adaptability, and ways of experiencing the world that can come with being Deaf.

That doesn't mean we should ignore barriers.

It doesn't mean that accessibility doesn't matter.

It doesn't mean that children shouldn't receive therapy, accommodations, assistive technology, interpreters, educational support, or whatever else they need.

In fact, the opposite is true.

We need to identify barriers and remove them so children can participate and thrive. Dr. McIntosh emphasized that we should focus on creating environments where children can flourish rather than approaching them as something that is broken and needs to be fixed.

There is a big difference between changing the child and changing the environment around the child.

That distinction matters.

What if our fears aren't their fears?

This is something I've thought about a lot as a parent.

In our conversation, I shared a story about my son transitioning into a mainstream school.

I was terrified.

I had all of these concerns running through my mind. I worried that he would be isolated. I worried about communication. I worried about how he would navigate the environment.

But when I actually talked to him about it, I realized something important:

Those were my fears. They weren't his.

He was excited.

And that experience reminded me how easy it can be to unintentionally project our own fears onto our children.

We see a potential problem and immediately start trying to solve it.

But before we do that, we can ask:

“What do YOU think?”

Sometimes the answer changes everything.

Your child can have a voice even when they need significant support.

One of the most important things Dr. McIntosh said was:

“Don't leave your child out of the decision-making.”

I think this is especially important when we're talking about children with disabilities.

We can sometimes make assumptions about what a child understands based on their age, diagnosis, communication style, cognitive abilities, or level of independence.

But needing support doesn't mean needing to be excluded.

A child may not be able to make every decision independently.

That doesn't mean they can't participate in decision-making.

There is a difference.

Maybe the child can't choose their entire educational program.

But perhaps they can tell you which part of the school day feels easiest.

Maybe they can't determine their IEP goals independently.

But they can tell you what they want to get better at.

Maybe they can't explain exactly what accommodation they need.

But they can tell you, “This is really hard,” or “I don't like when…”

Those pieces of information matter.

What does this look like at an IEP meeting?

As an SLP, I sit in on a lot of IEP meetings.

And one of my favorite things is when the child is there.

Because we're meeting about that child.

So why shouldn't they have a seat at the table when it is appropriate?

That doesn't mean every child needs to sit through an entire meeting.

For a young child, participation might look very different than it does for a teenager.

But as children get older, I believe we should increasingly create opportunities for them to participate in their meetings and understand what is being discussed.

They can share:

• What's working

• What's difficult

• What they enjoy

• What they want to improve

• What supports help them

• What they want their team to know

• What goals matter to them

Dr. McIntosh and I discussed how uncommon it still is for children to attend their own IEP meetings, particularly in the younger grades.

But involving children isn't just about getting their input.

It is also about teaching them how advocacy works.

When a child watches their team discuss their needs, listens to adults problem-solve, contributes their thoughts, and sees their voice taken seriously, they are learning.

They're learning:

I can ask questions.

I can say what I need.

I can disagree respectfully.

I can participate in decisions about my education.

My voice matters.

Those are skills they'll need long after they leave school.

We don't build independence by doing everything for our children.

This was another major theme of our conversation.

As parents, it can be incredibly uncomfortable to watch our children struggle.

We want to jump in.

We want to fix it.

We want to make sure they don't fail.

But if we remove every opportunity for our children to problem-solve, make mistakes, and experience manageable discomfort, we may unintentionally take away opportunities to build independence.

Dr. McIntosh talked about the risk of “learned helplessness,” when someone becomes accustomed to having others make decisions and solve problems for them.

That doesn't mean we should throw our children into situations they're not prepared to handle.

It means we can gradually give them more opportunities to try.

Let them order their own food.

Let them ask the teacher a question.

Let them decide which extracurricular activity they want to try.

Let them make a mistake.

Let them figure out how to solve a small problem.

And be there if they need you.

Support doesn't have to mean taking over.

Sometimes the most supportive thing we can do is step back just enough to let our child step forward.

“Getting out of the way” can be an act of advocacy.

One of the lines from the conversation that really stuck with me was Dr. McIntosh's idea that sometimes we need to “get out of the way.”

She wasn't suggesting that parents stop supporting their children.

Quite the opposite.

She was talking about giving children room to explore, take risks, make decisions, and discover what they're capable of.

We can be the safety net without being the person doing everything.

We can be the resource without being the decision-maker every time.

We can be there without always being in front.

And sometimes, that is what allows our children to discover strengths we didn't even know they had.

Let your child explore who they are.

Another important part of our conversation was the idea of allowing children to explore their own interests.

Not necessarily the interests we think they should have.

Not necessarily the activities we think will be most beneficial.

Their interests.

Dr. McIntosh talked about giving children opportunities to try things, even when we aren't sure how they'll work out.

They might succeed.

They might fail.

They might discover that they don't like it.

Or they might discover something they're incredibly passionate about.

All of those outcomes are valuable.

Our job isn't necessarily to predict our child's future.

It's to give them enough opportunities to discover it.

Inclusion means more than access.

Another piece of our conversation that I found especially important was the discussion about inclusion.

It isn't enough to simply place a child in a classroom, activity, healthcare setting, or community environment.

We need to ask:

Can they actually participate?

Can they communicate?

Can they build relationships?

Can they contribute?

Can they access the information?

Can they develop social connections?

Can they see themselves represented?

Can they influence what happens around them?

Dr. McIntosh emphasized the importance of removing barriers and making sure Deaf and hard-of-hearing individuals are included in decision-making, not simply as people receiving services, but as people who can help shape those services.

That's true inclusion.

Not simply being in the room.

But having a voice in the room.

What can parents do differently this week?

You don't have to completely change the way you parent overnight.

Start small.

The next time you're about to make a decision for your child, pause.

Ask:

“Can my child have a voice in this?”

Try questions like:

💬 “What do you think?”

💬 “What would you like to try?”

💬 “What's working?”

💬 “What's not working?”

💬 “What would make this easier?”

💬 “Do you want help, or do you want to try it yourself first?”

And when your child gives you an answer, really listen.

Their answer may not be the one you expected.

That's okay.

Because the goal isn't always to get the answer we think is best.

The goal is to help our children develop the skills, confidence, and self-awareness to participate in their own lives.

Your child doesn't need you to remove every obstacle.

They need you to help them learn how to navigate the world.

They need access.

They need support.

They need accommodations.

They need people who believe in them.

They need people who will advocate when barriers are placed in their way.

But they also need opportunities to make decisions.

To try.

To fail.

To problem-solve.

To speak up.

To discover what they're good at.

To figure out who they are.

And sometimes, they need us to take a step back.

Not because they don't need us anymore.

But because we're preparing them for a life where they get to be the person in charge of their own story.

That, to me, is one of the most important parts of advocacy.

Not just creating a better world for our children, but helping our children know they belong in that world and have a voice in shaping it.

🎙️ Want to hear the full conversation? Dr. Anne McIntosh and I dive into disability, communication, inclusion, independence, advocacy, resilience, and so much more on this week's episode of Parenthood Unscripted.