There was a knock on the door.
Surprise… Courtney’s beautiful new pink adaptive stroller had arrived early.

Wait… but why is there more than one?

Maybe we have to make sure it’s the right fit.

“Courtney, sit in it.”

We start pushing through quicksand to get to the stairs. But with each step, we sink a little deeper. Every time I try to ask for help, the help somehow adds more weight. The stairs seem so close, yet impossibly far away. Still, I keep pushing. Keep sinking. Keep trying.

Then… I wake up.

Phew. Just a dream.

Or maybe a nightmare.

Or maybe… a metaphor for life right now.

The new stroller? Yes, we really are waiting for a new adaptive stroller. Cross your fingers insurance doesn’t decide to play games and approves it quickly.

The multiple strollers? Maybe that part came from the fact that Alyssa currently has a fractured knee, and honestly, a second stroller might actually help me survive some outings right now. Who knows… LOL.

The condo? We don’t even live in a condo. But I’m pretty sure the stairs represented the end of the school year.

I won’t get into everything publicly, but this has been an incredibly hard year at work. Lately, it feels like we are crawling toward the finish line, and the quicksand metaphor fits perfectly.

And school isn’t the only place where I feel like I’m walking through quicksand.

I feel it at home too.

If you know me personally, you know the past six months have been incredibly hard with the loss of my mom. Learning to live without your mom is a “new normal” you never truly get used to.

Then April hit.

In one week, our afternoon nanny and Courtney’s in-home therapist both suddenly quit. In short, they both said they couldn’t handle Alyssa’s “attitude.”

To each their own.

Thankfully, our morning nanny stepped in and took over the afternoon hours. We will forever be grateful for her.

Being without a therapist for Courtney has been hard. It’s becoming more and more obvious that there are times during the day when we almost need two adults in the house — one person keeping constant eyes on Courtney, and another able to give Alyssa the attention she wants and deserves.

Yes, Alyssa is entering her pre-teen years. She’s independent in many ways, and honestly, she’s learning independence faster because of her sister’s needs. But sometimes she still just wants someone to hang out with. Someone to sit with her. Listen to her. Be present with her.

And sometimes… she really needs that.

Meanwhile, Courtney has developed some new behaviors that are wearing me down. She is intensely tactile-seeking right now. Her fingers are determined to explore every possible texture imaginable — soap, sand, Play-Doh, putty, slime, picking apart objects… EVERYTHING.

And slowly but surely, it feels like it’s destroying our house.

AAAAHHHHH.

Wait… maybe that’s the quicksand metaphor.

Maybe in my dream I was trying to walk through one of Courtney’s sensory concoctions.

And yes… for the record… this was an actual dream I recently had.

So, as we crawl toward the finish line over these next few weeks, if you see me, try not to add more weight.

Throw a life preserver instead.

April is Autism Awareness Acceptance Month, and while awareness has come a long way, there’s still a huge gap in understanding, especially when it comes to those who are considered “high-functioning.”

Back in 2024, Alyssa was diagnosed with autism. She is what many would call “high-functioning,” and on the surface, that might seem like a good thing. People assume it means her autism is mild. Manageable. Easier.

But the truth is, in my opinion, “high-functioning” can be one of the most misleading labels out there. What people don’t see is how much of her struggle is hidden, internalized, and often masked.

Alyssa doesn’t usually “look” like she has autism. She can communicate, she can learn, and in most moments, she can blend in. But that’s exactly why so much gets missed. Her challenges aren’t always obvious…they show up in ways that are easy to misunderstand.

They look like defiance.
They look like attitude.
They look like a child who just “won’t listen.”

But that’s not what’s really happening.

When Alyssa refuses to do something, it’s often not about being oppositional—it’s because something feels overwhelming, confusing, or completely out of her control. When she reacts strongly, it’s not because she’s trying to be difficult, it’s because her nervous system is overloaded.

Autism, especially in kids like Alyssa, is a hidden disability.

As Courtney has gotten older, it’s hard to miss that she has a severe disability. She may be in a special needs stroller, her diaper may be visible, or she may make sounds that stand out. Her needs are seen.

For Alyssa and others like her, there’s no cast, no visible marker, nothing that signals to the outside world, this is hard for her. And because of that, expectations are often higher, patience is often lower, and support is sometimes withheld.

People see what she can do and assume she should be able to do it all the time.

But autism doesn’t work like that.

Skills can be inconsistent. One moment she may seem completely capable, and the next, something small can completely derail her. Transitions, social misunderstandings, sensory overload—these aren’t minor inconveniences for her.

As most people know, Courtney wears headphones 24/7. What many may not realize is that Alyssa’s sensitivity to noise is actually even greater.

These are real barriers. And when those barriers aren’t recognized, her behavior gets labeled instead of understood.

That’s one of the hardest parts.

Because behind every meltdown, every shutdown, every moment that looks like noncompliance, there’s a reason. There’s a need. There’s a child trying to navigate a world that doesn’t always make sense to her.

Awareness isn’t just about recognizing autism when it’s obvious. It’s about understanding it when it’s not. It’s about looking beyond behavior and asking, what’s underneath this?

And most importantly, it’s about giving kids like Alyssa the same compassion and support we would offer any other child who is struggling, even if we can’t immediately see why.

Autism doesn’t always look the way people expect. But that doesn’t make it any less real.

And it definitely doesn’t make it any less hard.

Sometimes, the kids who look “fine” are the ones working the hardest just to hold it together.

I don’t feel like I can get anything accomplished in my house. “To-do” lists go untouched because I need to keep a pretty constant eye on Courtney.

Back in the day, if you took your eye off her for more than a minute or two, you’d find her climbing a railing to dangerous heights. Then there was the “poop” phase—I won’t go into details on that one…it was AWFUL.

Even now, at 12 years old, if I leave her unattended for more than five minutes, you might find her playing with soap, getting into Alyssa’s room and destroying a squishy ball, digging into a basement closet and playing with styrofoam, or adding ingredients to putty that definitely shouldn’t be added. Oh…and the non-edible things that she has eaten over the years!

I (or Joe or Alyssa) literally have to check on her every five minutet…and even that isn’t enough. You’ll hear this question often in our house: “When was the last time Courtney was checked on?”

Remember those toddler years? I feel like we are stuck there for life.

So why start a project when I have to pause every five minutes to check on Courtney, and still worry about what I’ll find since the last time I looked?

I’ve said for years that I need to get cameras for the rooms she spends the most time in, just so I can cook dinner without constantly worrying about what she’s getting into. Years have passed, and I still didn’t have cameras…until today.

I have the first one hooked up, and wow, I can already tell this is going to be a game changer. Though I may need to find a way to replace the insane number of steps I used to get from going up and down the stairs all day…hmmm.

Some people might ask, “Isn’t that an invasion of her privacy? She’s a pre-teen, doesn’t she want privacy?”

I wish I could give her more than five minutes of privacy. Rugs in our house have been destroyed because we left her alone for just a minute.

For us, this is just one more way to make our home work a little better. A little more peace of mind, a little more ability to get through the day, and maybe even finish a task from start to end. And honestly, that feels like a pretty big win right now.

You know that getting into everything phase?
Where silence is suspicious.
Where every room scan turns into a risk assessment.
Where you can’t sit down, not because you don’t want to, but because someone is actively opening, dumping, or dismantling something.

People say, “Enjoy it while it lasts.”
“This phase will pass.”

For Courtney, it hasn’t.

She’s twelve, but she still gets into everything. And not in a cute, curious way, this is relentless, zero-fear exploration that requires constant supervision.

Drawers. Cabinets. Bags. Toiletries.
Food that isn’t food.
If it exists, she’ll find it.
If it’s closed, she’ll open it.
If it’s hidden, she’ll locate it.

Toddler-proofing?
I call it Courtney-proofing.

There’s no “I’ll just run to the bathroom.”
No “She’s old enough, she’ll be fine.”
Because the moment I look away, something is happening.

Sometimes it’s harmless chaos.
Sometimes it’s the kind of moment that makes your heart drop and your adrenaline spike.

People see a twelve year old and assume independence.
What they don’t see is the constant mental checklist.
The vigilance.
The exhaustion of never turning your awareness off.

And yet, this is so deeply Courtney.
Her curiosity.
Her determination.
Her need to experience the world hands on, fully, now.

She’s not being difficult.
She’s being Courtney.

And my job, as hard as it is, is to keep her safe while she explores a world that was never designed for her kind of curiosity.

“Get out, Erin. It will do you good.”
“Take time for yourself.”
“Treat yourself.”

They’re right. It does feel good to get out and enjoy time without kids.

But then I get home…

Within minutes, not only do I feel like I didn’t actually get a break, I’m somehow more stressed than before I left.

Putty in hair.
Stains in the rug.
Dishes in the sink.
Toys not put away.

I don’t blame the sitters. They truly do the best they can.
I don’t even blame the girls.

Keeping up with Courtney is not for the weak. Add Alyssa’s sometimes demanding personality and behaviors into the mix, and trust me, what the sitters deal with while I’m gone is exactly what I deal with when I’m home.

So why do I feel so defeated when I get back after finally taking time for myself?

(The picture is of the chunk of hair I had to cut out of Courtney’s hair due to yet another putty disaster.)

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.