On November 13th, my family’s lives were shattered.
My mom—mother of ten, grandma of many, teacher of even more—passed away. As I’ve tried to navigate this grief, I found myself struggling with how to write about her. It wasn’t until I was scrolling through pictures, especially the ones of her with Courtney, that it hit me…the world lost the Autism Whisperer.

My fascination and love for the autism community started long before my girls were born. My mom was the one who introduced me to the beauty of Autism. While I was in college studying to become a teacher, she was teaching preschoolers with special needs, many of them on the spectrum. Whenever I was home on breaks, I spent as much time as I could helping in her classroom.

I’ve told this story before, but it remains one of the defining moments of my career:
I went on a field trip with her class, and one of her students with significant needs sat on my lap while waiting for his turn. That was it. I was hooked. Something inside me lit up, and from that moment, I wanted to learn everything I could about autism. And I had the best teacher right in front of me—my mom.

Watching her work was incredible. She loved every student who walked through her door with her whole heart. They felt that love too; you could see it in the way she calmed them, how she held them, how she made them feel safe. She had a gift—one I didn’t fully understand until much later.

Years passed, and then my own beautiful blue-eyed daughter began slipping into her own world. With the help of two important people in my life, I was able to accept that my daughter had autism. One of the people who struggled most with that diagnosis was the Autism Whisperer herself, my mom.

To her, Courtney was perfect. And she was. But once the diagnosis became official, my mom let go of the denial and stepped into a new role: Courtney’s biggest cheerleader and her number-one teacher.

My mom was incredible with all of her grandchildren, but with Courtney, you could see her special-education magic come alive again. When I look back at photos now, I can see it so clearly, the look in my mom’s eyes. The look of someone who truly understood, accepted, and adored the autistic world. The look of an Autism Whisperer.

As her health declined over the years, it broke her heart that she couldn’t help me with Courtney the way she once had. I can still hear her voice:
“Oh, Erin… I wish I could help you more.”
And every time, I reassured her that loving my girls was everything I could ever ask of her. And it was.

A few days after she passed, I took the BCBA exam. Something I had worked so hard for, something she was so proud of me for chasing. When I found out I passed, it broke my heart that I couldn’t call her up to tell her. But in that testing room, and in that moment of passing, I felt her with me. I know she was there, cheering me on the way she always did. It was one of the most bittersweet moments of my life.

These last few weeks have been harder than I ever imagined possible. People say there’s nothing like losing a parent, but until it happens to you, there is simply no way to understand the depth of that pain.

On November 13th, I lost my mom.
My friend.
My girls’ grandma.
My mentor.
And we all lost our Autism Whisperer.

Summer break is coming to an end.
As we wrap up the remaining days, I’ve been reflecting on our recent vacations.

For many families, vacation means letting go of routines, trying new foods, and embracing spontaneity.
For us, vacation means creating predictability out of chaos, finding peace in unfamiliar places, and accepting that joy may look different—and that’s okay.

We take the same two trips every year: Mackinac Island, MI, and the Cranston family beach house in Connecticut.

Mackinac Island

Mackinac Island is as whimsical as it gets—no cars, horse-drawn carriages, and fudge shops on every corner. It sounds like a dream.
But when you’re traveling with a child like Courtney—who has severe autism, is minimally verbal, not potty trained, and experiences intense sensory needs—you don’t step into that dream. You create your own version of it.

We go into this trip every year expecting the worst but hoping for the best. Some challenges are predictable: eating dinner separately, with one of us staying in the room with Courtney while the other parent eats; missing activities we’d hoped to enjoy as a family; or watching Alyssa take a carriage ride with Joe while I stayed behind with Courtney, knowing she couldn’t handle that particular outing.

Those moments sting quietly. They remind us that even on vacation, we can’t step away from the caregiving, the advocacy, the constant mental load.

And yet—there’s still magic. Especially when princesses and superheroes are involved.

Courtney lit up when she saw them, asking for each by name—something she doesn’t often do. She hugged Elsa without hesitation. The princesses came to her gently, offering their hands, crouching low, meeting her exactly where she was—no pressure, just presence. Those outstretched hands felt like everything we try to give her every single day: an invitation to join the world without needing to change who she is.

We didn’t do everything on Mackinac Island. We didn’t need to.
We did what worked for both Courtney and Alyssa, and in the process, we made memories that matter.

The Connecticut Beach House

As we do every year, we ended our summer at the Cranston family beach house in Connecticut—a place that feels like a second home. No strangers. No big crowds. Just space to be ourselves.

At the start of the week, Courtney loved playing in the wet sand at low tide. She spent hours digging, feeling the textures, letting the waves wash over her feet. She was calm. She was joyful. She was in heaven.

And then—like so many things with autism—it changed.

After a few days, she no longer wanted to go to the beach. We tried other outings, like family dinners out, but she grew frustrated quickly, wanting to return to the comfort of the cottage—only to then be frustrated there because of the lack of cell service for her greatest coping tool: YouTube.

So, we adjusted. Just like in Mackinac, we split up at times. Joe and Alyssa would go to dinner with his parents while Courtney and I stayed back. It’s not what most people picture when they think “family vacation,” but it’s what works for us.

We found joy in the smaller moments—watching Alyssa meet Courtney where she was, without expectations. Courtney even began asking Alyssa for hugs and tickles, using her voice and gestures to seek connection. Those moments kept our hearts full, even on the harder days.

So what does does vacation look like for us?

Vacationing with a child with severe autism means redefining what “fun” and “relaxing” look like.
It means letting go of the fantasy and embracing our version of reality—messy, beautiful, unpredictable, and real.

(Back a few months ago while we were in the thick of the due process with our local school district, I wrote out my feelings in a letter to the district. Though I had full intention to post it, I kept waiting because I wasn’t sure if it was appropriate. As the neighborhood schools finish off the school year and friends post about their 5th graders moving on to Jr. High, my emotions have resurfaced and I have decided what would help is finally posting this. So here it is…)

I remember when I married my husband, who is a graduate from the district, told me how our future kids will be lucky to grow up in one of the best districts in Illinois. So, when my oldest was diagnosed with autism, I sighed with relief because she lives in this district and she will get the education she needs to meet her potential.

District, I remember oh so vividly at the end of her first year of preschool her team shared with us that the district was moving to an all inclusive preschool environment and they would be blending her. I shared how I was certain she wasn’t ready for such an environment but you assured me, this will be the best thing for her. 

District, my husband and I shared our concerns with you as she went into kindergarten to a school that was having the instructional classroom for the first time with a new teacher. A school with so much experience with children with similar needs was 7 minutes away from our house, but there wasn’t room for her. So to a brand new program she went. It’s ok though, she was going to be a part of this other school and their community for 6 years and, again, you assured us, it will be just fine.

District, what do you think would have happened if a regular 2nd grade classroom had 2 different teachers in one year and then the next year 3 different teachers? Yes, that’s right, they would have shown up as a huge group at a board meeting ready to fight and they would have gotten their way. Not a little special needs classroom though that was continuously getting the short end of the stick.

To the two district administrators that promised the transitions were done for a few years. You promised us that Courtney’s needs were finally going to be of utmost importance. As I said before, shame on us for believing that you could keep such a promise. But, District, shame on you for not finding a way to give this one little girl some consistency just for once.

District, you said 4th and 5th grade will go just fine at this new school. There was no need for us to worry because Courtney doesn’t struggle with transitions. Though, again, a newer team, it’s a strong team and all will be fine!

Here we are, District, nothing has been fine. Nothing has gone well. In fact, I’m pretty sure just the opposite. That little girl that was going to be just fine in a blended room in preschool is now too severe to even be educated by your own professionals. Too severe to be included in her home district. Too severe for one of the best districts in the state of Illinois to meet her needs. Too severe to finish off elementary school with all the other 5th graders in the district.

Maybe I’m an angry parent going through that dreaded grieving process. If that’s the case, I have the right to be that parent. And yes, I’ve gone through the stages. I’ve blamed myself over and over and over again. I’ve cried. Boy have I cried. I’ve cried that maybe I should have fought harder for her. But here’s the thing…I have been fighting every step of the way for what I, as her parent, feel is best for her. The one thing she has not gotten in return is her free and appropriate public education that EVERY child has the right to from the district that should be able to provide it.

District, you failed her and you should be ashamed of yourselves. I don’t blame the teachers. I truly believe they tried their best. I blame the district administrators. I blame those who make the big decisions. I blame you, District. 

And to Courtney…you are a ray of sunshine. You are as true as they come. And no matter how hard of a day, you always find a way to make me smile.

Parenting is a journey filled with love, learning, and challenges. When your children have unique needs, that journey takes on a whole new depth.

As I’ve shared, the past several months have brought one obstacle after another. After finally getting through the legal battle and helping Courtney transition to a new school, I thought maybe—just maybe—things would slow down. But that wasn’t the case. Alyssa now needed are full attention.

Several weeks ago, I was watching TV while Alyssa was on FaceTime with a friend. I wasn’t paying much attention until I heard her say, “I don’t like that right now because I’m afraid it will go in my mouth and hurt me.” I wasn’t sure what “that” was, but her explanation sounded so mature for her age. Later, she mentioned her water bottle. When her friend asked where her Stanley cup was, Alyssa replied that she doesn’t use it anymore because she’s afraid germs will get in the straw.

How does a 9-year-old carry such intense thoughts and fears about germs and harm? My heart ached hearing those conversations.

At 9 years old, she should be worried about when her next playdate is—not how to eat finger food without touching it because her hands might be contaminated.

At 9 years old, she should be thinking about what game to play at recess—not whether a blade of grass might fling into her mouth and poison her.

At 9 years old, she should be having silly sibling arguments—not fearing her sister might be carrying one of her allergens.

At 9 years old, she should be running into my arms for comfort—not hesitating because she’s afraid I might be contaminated, too.

At 9 years old, she shouldn’t have to navigate the complexities of anxiety that a doctor now calls OCD-like behaviors.

It’s been a tough few months, filled with meetings with her psychiatrist, psychologist, therapists, and school team. But then something beautiful happened.

Two weekends ago, I watched my amazing 9-year-old enjoy a very belated birthday gift—a photoshoot with her friend titled “The Future is Female—Wicked.” And in that moment, I couldn’t help but feel like we truly defied gravity. Medicine is helping, therapy is helping, things are finally improving for my sweet girl. Her brain was playing some crazy tricks on her but now she is back. 

Alyssa, the road may be rocky. At times, it may feel scary. But you are strong, you are brilliant, and you are destined for great things. The future is yours.

Dance through life boldly, my girl—and know that I’ll always be here to help when you’re unsure of the next step.

(Photos by Novella Photography)

I’m home with Courtney today. She woke up at 3 a.m. Her period started yesterday, and now she has the cold I just got over. In the midst of exhaustion, I made the decision that we both needed a day off. So here we are, just chilling.

I sit here, looking around at my house—cluttered and desperately in need of a spring cleaning that probably requires a dumpster. My computer sits beside me, reminding me I should be working on end-of-year progress reports, an IEP, or even studying for the BCBA exam I’ll be taking for the second time in June. But instead, I just sit.

Then I remembered—it’s the end of April. The end of Autism Awareness and/or Acceptance Month (whatever you want to call it). Maybe instead of crossing off items on that never-ending to-do list, I should blog. But I’m not finding this task any easier than the others.

What do I have to say about autism these days? Especially now that it’s suddenly a hot political topic? Nope… not going “there”.

Life has been hard lately. Really hard. I’m not even sure “survival mode” begins to cover it. Sure, we’re all healthy and happy, and that’s the most important thing. But the chaos of the past several months has left me emotionally, physically, and mentally drained. I go through each day on autopilot. A year-long legal battle. Trialing medications. Navigating the uncharted waters of a pre-teen with autism starting her period. OCD. Anxiety. Initial IEP. Re-evaluation. Sleepless nights. Therapies. Activities. The list goes on. Illnesses. Just when it feels like we’ve overcome one thing, something else hits.

Ok, so maybe I will go “there”. I’ll answer the question so many parents like me are feeling the need to answer right now:

Is having children with autism a tragedy? Is autism destroying our family?

Some might read what I’ve written and assume the answer is yes. But here’s the truth: Having children with autism is hard. Very hard. But is it a tragedy? In my opinion, absolutely not.

And in case you don’t know our story—both of my girls have autism. One is considered as having profound autism.

Is it destroying our family? No. Does it make daily functioning incredibly difficult at times? Yes.

Do families like mine need help? Absolutely.

And that’s the message I want to end Autism Acceptance Month with: We’re not looking for pity. We’re not asking anyone to see our lives as tragic. We’re asking for understanding, for support, and for a world that sees our kids for who they are—worthy, valuable, and deserving of everything good life has to offer.

A year ago today, I posted a piece titled “It’s Okay to Not Be Okay.” I reflected on how incredibly hard January and February had been for our family due to some traumatic events. In that post, I wrote:

“January and February were so hard. Actually, they were traumatic. I welcomed March with open arms, even though it came with some big changes. But after a meeting with Courtney’s school today, I’m not feeling confident that March will be much better.”

March wasn’t much better. In fact, that’s when everything truly started. That’s when it was first hinted that Courtney’s team was leaning toward recommending an outplacement. The official recommendation came in May, but I knew it was coming as of March 8, 2024.

Here we are, one year later. I could write a book about what we’ve been through over the past year—the struggles, the tears, the arguments. It was awful. And all because we were fighting for something Courtney had a right to: a Free and Appropriate Public Education.

A few days ago, I posted that a school had been found—a school not of our choosing. I shared that we were ready to keep advocating. But with the guidance and support of some incredibly important members of #TeamCourtney, we decided the best path forward was to give this new school a try.

The tears have been flowing lately—tears of exhaustion, anger, and fear. You know the five stages of grief? I’m pretty sure I’ve felt them all this week.

At first, choosing to move forward with the assigned school felt like admitting defeat after everything we had fought for. But we were quickly reminded that this couldn’t be further from the truth. We poured our hearts into advocating for our girl. Even Alyssa made sure her voice was heard throughout this process. Our goal was always to ensure Courtney got what she deserves. And that, my friends, makes our family winners.

To everyone who has been part of #TeamCourtney in so many ways—thank you! Now, if you could continue being part of her team by sending all the positive vibes as she starts at her new school next week, we would be so grateful.

I am her voice. She is my heart.

Advocating for my girls has been the hardest job I’ve ever had—yet, without hesitation, it’s a job I would do over and over again, no matter the difficulty. Lately, that fight has been more exhausting than ever, specifically for Courtney. We have poured our hearts into this battle, doing everything in our power to secure the right support for her. And yet, after all that effort, here we are.

I am at a loss. How did we get to this point? I’ve replayed every conversation in my head a thousand times, searching for answers. But no matter how many times I go over it, the outcome remains the same.

Today was Courtney’s last day at her current school. And no, you didn’t miss a big announcement—we haven’t found a school for Courtney. The district did. A school we did not approve of.

Is this legal? How is this okay? What happens next? These questions have consumed my thoughts for the past 36 hours.

I want to have faith that this new school will be the right fit for her. But after everything she has been through over the years, my patience for “wait and see” is gone.

I want to trust that the district knows what’s best for Courtney. But after so many broken promises, that trust no longer exists.

So, what now? The only thing I can do: Keep fighting. Keep pushing. Keep advocating. Because giving up is not an option. Not now. Not ever.

Mediation. A hearing. A list of over 70 schools. More than 20 releases of information signed. A dozen school tours. Hours of meetings. Thousands of emails. And let’s not forget the sleepless nights and the tears. All of this has been part of the exhausting, soul-crushing process of finding a therapeutic school for Courtney.

Now, it seems the search may be coming to an end—but instead of relief, I feel more frustrated than ever. A school has been chosen, but not by us. Not by the parents who know her best. Not by the people who have fought for her every step of the way. And worst of all, not a school we believe will truly meet her needs.

We’ve spent years advocating—asking, pushing, sometimes begging—for the right support, only to be met with roadblocks and excuses. This past year, we’ve fought harder than ever for what we know is best for Courtney. They say they want to help, but their version of “meeting Courtney’s needs” continues to fall painfully short.

I don’t need a perfect school. I just need a place where Courtney will be supported, challenged, and respected. A place where she isn’t just accommodated but truly understood. A place where, in whatever way she can, she’ll show me, This feels right. I didn’t realize that was asking for the impossible.

More than anything, I wish we could ask Courtney. I wish she could tell us where she wants to go.

But until we find that place, I won’t stop looking.

I have so much on my mind lately—so much just building up, ready to explode. Don’t keep it boiling inside, they say. Share it. Let it out. I know there are people out there who will listen when I’m ready.

But every time I think I’m ready, I end up telling the “I’m doing okay” version. The version that says, I’m hanging in there, I can handle this. When the version that really needs to come out is, I’m hanging on for dear life.

I have sat down, ready to write, so many times. And every time, I just sit there, staring at a blank page.

How do I put into words the ugly legal battle we’re going through?
How do I explain the gut-wrenching process of searching for a therapeutic school for my child—only to keep hearing, we can’t meet her needs?
How do I help my daughter through this new phase of life when I can’t even find the words to explain what she’s going through?
How do I describe the way anxiety is creeping in, making everyday life harder for one of my girls?

I don’t know how to say it all. I don’t know how to let it go because if I do, I might fall apart.

But maybe I don’t need the perfect words. Maybe just saying this is hard is enough for now. Maybe just admitting that I don’t have all the answers is the first step.

So here I am, trying. And if you’re reading this, maybe you get it. Maybe you’ve been here too. Maybe you don’t have the words either.

And maybe—for now—that’s okay.

New Year Day… a time for reflection, a moment to pause and think about the year that just came to a close. It’s also a time to set intentions for the year ahead.

As I look back on 2024, I must admit it felt like a whirlwind. There were moments when I wondered if the weight of the world was truly resting on my shoulders. I find myself asking, “Did all of that happen in just one year?” Yet, like many challenges before, I faced them head-on, doing my best to navigate the storm.

I am deeply thankful for the incredible support system that helped us through this turbulent time:

• Our new caregivers who stepped in when our long-time caregiver had to move away.
• Our dedicated advocate and attorneys who guided us through some of the most complex school issues we’ve faced for both of our girls.
• My friends and family, whose unwavering emotional support carried me through the rollercoaster of highs and lows.

While I’m relieved to bid farewell to 2024, I won’t forget the strength I gained from overcoming its challenges. There’s a saying that resonates with me: “What doesn’t kill you makes you stronger!”

As we step into 2025, I know it will bring its own set of challenges—some new and others lingering from the previous year. But just like before, I am determined to confront them with resilience and courage.

I wrapped up 2024 with a special activity: seeing the movie Wicked, a long-time favorite musical of mine. The song “Defying Gravity” has always held a special place in my heart. It’s my anthem—a reminder of my strength and ability to rise above life’s obstacles. As the song played, I felt a wave of emotions wash over me, crying not just from exhaustion, but from a place of pride for what I’ve endured.

Goodbye, 2024. I truly defied gravity as I tackled every challenge you threw my way. Hello, 2025! I’m ready to embrace you, even as I anxiously anticipate the light at the end of the tunnel regarding some ongoing struggles. I look forward to the adventures that await us and remain grateful for the incredible people who will stand by our side, no matter what challenges may come.

Happy New Year, everyone! Here’s to new beginnings and the courage to face whatever lies ahead!