You deserve more than just survival mode

Photo by Sora Shimazaki

Wendy is a devoted mother, she faced the daunting journey of raising her son, who was diagnosed with autism. Managing the complexities of therapies, educational systems, and societal misunderstandings, she often found herself questioning every decision.

One pivotal moment was when Wendy had to advocate for a change in her son’s therapist. She realized that consistency and understanding were crucial for his development. This decision, though was challenging, but it underscored the importance of trusting her instincts and prioritizing her child’s needs.

Throughout her journey, Wendy emphasized the significance of self-care. She understands that to support her son effectively, she needs to ensure her well-being. Her story is a piece of evidence of the resilience and the challenges that parents of autistic children face daily.

Source: Norooz Clinic – Raising a Child Who is Living With Autism: Wendy’s Story

It struck a nerve because when you’re raising a child with special needs, exhaustion isn’t just physical. It’s emotional, mental, quiet, and constant.

Let’s pause for a second and ask about something important.

How have you been coping?

If your cup is always empty, how can you pour it into your child?

This is for you. Not as a reminder of your strength. But as an invitation to care for yourself as well.

Why Your Self-Care Isn’t Selfish

You’ve probably heard the phrase,“You can’t pour from an empty cup.”

But when your life revolves around therapies, appointments, IEP meetings, meltdowns, and long nights, self-care can feel like a luxury.

It’s not. It’s survival, restoration, and it’s how you keep going.

You are the hero parent, and the anchor in your child’s storm. Even anchors need maintenance.

These are Some Simple Self-Care Strategies That Work

• . Schedule 10-minute breathers.

Even just 10 minutes of stepping outside, deep breathing, or listening to your favorite song can reset your mind.

• Join a support circle

You don’t have to walk through this all by yourself. Virtual parent groups, Facebook communities, or local meetups can offer more than advice, they can offer you understanding and support.

• Ask for help without guilt

Tag in a friend, ask a neighbor. Or let your partner handle dinner. You’re not failing, you’re human.

• Sleep is sacred

You know sleep can be erratic. Even a few hours of rest can make a world of difference. Set boundaries, and let your body recover.

• Celebrate your wins, too

Your child’s progress matters, and so does yours. Did you stay calm during a meltdown? Did you advocate during an IEP? You’re growing, too.

You Are the Hero of This Story.

You’re a parent. You’re an educator, a therapist, a warrior, and a guide.

I don’t want you to forget, you’re a human being.

You deserve joy, rest, and to feel great again.

I want you to remember what Wendy discovered, sometimes the most powerful thing you can do is say, “I need care, too”.

Hear What a Clinical Psychologist and Researcher Has to Say.

Dr. Elisabeth Dykens, a Professor of Psychology and Human Development at Vanderbilt University, has extensively researched the stress experienced by parents of children with special needs.

In a 2019 conference presentation, she highlighted the critical role of self-care in mitigating this stress. Dr. Dykens emphasized that neglecting self-care can lead to increased anxiety and depression among parents, underscoring the necessity of prioritizing personal well-being to effectively support their children.

Today, I encourage you to pause for a moment and take a deep breath. When you care for yourself, you show your children how to care for themselves someday, too.

Do you have any strategy different from the ones mentioned? Kindly share with us in the comment section, let’s learn together.

Dear, Hero Parent

A father once talked about the first time he sat in an IEP meeting.

He walked into the room thinking it was just a check-in. But within minutes, papers were passed around, acronyms were flying, and a dozen professionals were speaking. None of whom had spent more than 10 minutes with his daughter.

This was a brand new language, he felt overwhelmed.

He left that meeting confused and frustrated. He mentioned it later, “I didn’t know, I am making the right decision.“

But something later changed everything.He had the choice to bring someone else, an advocate.

Not to speak for him.

But to help him speak up.

That’s what advocacy looks like.And it comes in different forms, each one is powerful.

If you’ve ever left an IEP meeting feeling lost or second guessing yourself, you’re not the only one. But you’re also not powerless.

Let me introduce you to three types of IEP advocates every parent with a child with special needs should know about.

• The Parent Advocate (That’s you, the hero).

You are your child’s first and most consistent voice.

The parent advocate prepares. Learn the law. Shows up with notes, questions, and clarity. You may not have a background in education, but you have something stronger. Lived experience.

When you understand your rights under IDEA, know your child’s strengths and needs, and lead with compassion, you can dictate the tone of the room.

Always remember, you belong at that table.

• The Professional Advocate.

Sometimes, we all need a guide.A trained IEP advocate can help you.

i. Review IEP documents

ii. Attend meetings with you

iii. Offer strategies when you’re hitting a wall

They won’t take over, they will empower you.

They remind you, you’re not crazy for pushing back.That your gut matters, and your voice counts.

You can find them through local nonprofits, school districts, or online advocacy networks.

• The Peer Advocate.

These are fellow parents who’ve walked the road you’re on.

They may not have certifications, but they have wisdom, heart, and stories. A peer advocate might text you encouragement before a big meeting. They’ll share what worked for their child, and what didn’t.

They will remind you that you’re not on this journey alone. And that’s sometimes the most powerful advocacy of all.

Hear What an Educational Consultant Has to say

Dr. Danielle Cohen, is an IEP advocate and educational consultant. She emphasizes the significance of collaboration between parents, educators, and school districts.

She advocates for individual educational plans, student’s specific requirements, to ensure they receive the necessary accommodations and services to thrive academically, socially, mentally, and behaviorally.

Advocacy is confrontation. It’s a connection.You’re not “that parent” for asking questions. You’re the right parent for your child.

No one knows your child like you do.But that doesn’t mean you have to do it all alone.

In every IEP room, you deserve support.You deserve to feel seen.And your children deserve a team that truly gets them.

So before your next meeting, take a breath.Reach out, and prepare for it.Always remember the hero in this story is you.

Here’s a bonus for you, download the PDF checklist version of the 3 IEP Advocates in the link below.

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Prof. Sherley Louis