From Meltdowns to Meetings

From Meltdowns to Meetings: How I Advocate for My Neurodivergent Child

There was a time when I literally measured my days in meltdowns, my child’s and my own. Before I ever knew the ins and outs of IEPs, 504s, or IDEA, I was just a parent trying to survive another tough morning just trying to get my daughter to school, another misunderstood moment when communication was a roller coaster ride on both sides, another phone call from school or my daughter.

If you're reading this, maybe you’ve been there too. It’s exhausting, frustrating and sometimes extremely scary.

If your child is neurodivergent (including autistic, ADHD, dyslexic), or maybe just doesn’t seem to fit in and you're trying to figure out how to help them thrive, not just survive. I want to share my journey with you. Definitely not because I have all the answers, but because I know how lonely and overwhelming this can feel. I would sometimes see a light at the end of tunnel, but then think ‘is it just the light of the train speeding at me?’ Can you relate? Here are some things I have learned so far on my journey.

Trusting Your Gut (Even When Others Don’t)

Before there was a diagnosis, there were signs. The trouble changing routines. The intense reactions to “little” things. The anxiety felt in a crowded classroom. I knew my child needed something different, but I didn’t know what that was. I have been in the mental health field for most of my career. I got my degree in Psychology. I even had a prior child with ASD and went through school on an IEP. How could I not see what was going on?

Still, I kept asking questions. I listened more closely to what she wasn’t saying with words but was communicating in every other way. I saw the anxiety. I set up counseling. I even got psychiatry involved, which added the ADHD diagnosis to the generalized anxiety. But, in middle school, she was having more stomach aches and needing to come home early or not wanting to go to school at all. There were more gut-wrenching meltdowns in the evening. Things were going downhill and fast. I knew this was more than anxiety, but I had no idea what it was. I’m talking with the therapist and psychiatrist frequently, begging for suggestions. I took her out of public school and moved her to private school. This didn’t help (actually made it worse – more on that another time). The psychiatrist suggested online school until middle school was over. This gave some relief but not enough. There was still anxiety about classes, problems with routines, meltdowns when she felt overwhelmed (often out of extreme perfectionism). Finally, the psychiatrist asked about getting an evaluation for autism.

“She looks/acts/appears nothing like her brother”, I said.

Females present totally differently than males when looking at traits of ASD as well as ADHD. What?!!? I thought I “knew” autism. I had read about it, dealt with the school on it, felt like I had a handle on it. GREAT! I get to re-learn autism. I can tell you that after almost two years of researching, females have a totally different presentation of traits, especially concerning level 1.

MY GUT WAS RIGHT. And I couldn’t have gotten interventions years earlier. Cue the “mom guilt”.

If you're in that space right now—trust your gut. You are the expert on your child. You are the BEST expert when it comes to your child. And you are not alone!

Learning the System (and the Language)

I did not set out to become a parent advocate. I actually had aspirations of forensic work or maybe private practice. I just wanted, no - needed, support. But to get it, I had to learn how the school system works—and more importantly, how it doesn’t.

Terms like FAPE, LRE, IDEA, IEP, 504 and accommodations sounded like a foreign language. I attended online workshops, followed parent advocates online and social media accounts, and started asking questions like, “What am I missing?”

Knowing the language gave me power, confidence and most importantly it gave my child a chance to be truly seen and heard.

Shifting from Reactive to Proactive

I thought I was handling the issue by having her engaged in therapy, trying different communication styles, and having long conversations with her to attempt to understand her - - really understand her. At first, I mostly reacting when there was a problem. But they kept growing. Now, I act before things escalate. I have always made a point to share what’s working at home and in the past. I send short emails with helpful updates and let the teachers know that I truly want to hear from them. Being proactive helps everyone stay focused on solutions instead of just reacting to crises.

However, sometimes your proactive stance needs to be assertive, consistent, intentional, and even demanding in some cases.

Finding (and Building) a Support System

Support is the game changer. I needed support. My daughter needed support. I had to find my people—other parents, therapists, educators who get it. Not everyone will understand you or your child, but some will. So, keep looking (and looking and looking) until you find them. They are there! I promise you. You’ll never see a billboard or flashing sign with all the information you need. But if you look, you will find your tribe. And your tribe will give you stability and guidance which leads to confidence and even a little serenity.

And if you're further down the path like me, consider becoming that person for someone else.

Like I noted in the earlier section, being a parent advocate was not what I set out to “be” per se. It was just something I had to do. But after learning how difficult it can be, seeing parents giving up out of overwhelm and frustration, and learning how immense and involved the process is, I knew I had to do more. I felt driven to help others.

Redefining Success

We don’t always see success as straight As or perfect behavior. Success might mean using a coping skill instead of melting down. Advocating for a break before things get too big. Having one good day. Saying, “I need help” and not feeling like they are bothering anyone. Successes can be huge like finishing an entire school day. They can also be small like being on time to school. And hearing “today was a pretty good day” will still melt my heart. Because a good day is a very big win in my book. It should be in yours as well.

Our wins are quieter—but they are huge and no less important than the louder ones.

Finally, You Are Not Alone

If you’re navigating a neurodivergent journey (or roller coaster ride as I often call it), please hear this: You are not too emotional. You are not overreacting. You are not imagining things. Everything you feel is OK.

You are a fierce and loving advocate. People, especially school personnel, may have issues with your passion. That’s on them, not you.

From meltdowns to meetings, from confusion to clarity—you are doing brave, beautiful work. Keep going.

And if you ever need someone in your corner—I’m here.

Please feel free to share this post with anyone you may know that can use this information.