Journalist, Author, Blogger

Autism clinicians bring essential expertise. But lived experience brings something more: context. Without that context, even the best professionals can miss what families really need.

What do our special kids really want for the holidays? What do you buy for a child who doesn’t make a list? Who doesn’t play with toys, or read, or care what they wear? Maybe we’re overthinking it.

I know how difficult holidays can be. Many Thanksgivings, I have spent away from the cramped kitchen. I stayed in another part of the house because the noise was overwhelming for my daughter. The crowd was just too much for her. How do I get through it with a smile on my face? I count…

Adjusting to life without Brielle at home has been a profound journey. Despite the emotional turmoil, I find solace in knowing she is thriving in her group home, embraced by caring staff. Yet, the haunting stories of neglect fuel our worries, reminding us of our vigilant love and advocacy.

Am I OK? How do I answer that? Right now I feel like I will never be OK. My 23-year-old daughter is moving into a group home in days, and I’m not OK. Externally, I guess I’m OK. I woke up today, I didn’t cry. I got stuff done. I just packed another suitcase full…

I wish we could cure autism. I understand that some people may not believe autism needs to be cured, and I respect that. Autism is a wide spectrum, and I know it well. There are many incredible people in the world with a type of autism that makes them unique, talented, special, and amazing. My…

After seven years as New Jersey’s government advocate for individuals with developmental disabilities, Paul Aronsohn is still struck by the indifference. Year after year, Aronsohn brings attention to heartbreaking stories of disabled individuals abused in group homes and neglected on buses; families desperate to keep their violent children with severe autism from hitting them and…

It’s 6:34 a.m. and Brielle is standing over me on my side of the bed, pressing “spaghetti” on her big pink iPad. I nod and she skips back out. I search for my glasses and my phone, throw on my sweatshirt and slippers and head toward the kitchen. I close the bedroom door behind me,…

When Mary gave birth to identical twin sons on Christmas Eve in 1988, she felt like she had won the lottery. But within two years, she knew her boys were not developing like others their age. Robert and James didn’t seem to notice if Mary was upset, nor did they miss her when she wasn’t…

Do I wish she didn’t have autism? You bet I do.

Imagine having to build a padded room in your home to keep your daughter safe.

We visited her future group home this week. I wanted to hate it. No such luck. It was everything I could have wanted for my daughter, if I ever dreamed of her moving out. I don’t know that I did. But if I did, I would have wanted a big beautiful home in light colors…

I drive with my left hand on the wheel and my right on my daughter in the back seat. My husband scolds me for it. He can pound sand. Brielle usually just humors me by holding my hand loosely for maybe a minute if I’m lucky. In recent weeks, she’s been holding on longer. Just…

Autism consumes us, so much so that when non-autism trauma happens in our lives, it throws us. It pushes us to the very edge of our sanity. I haven’t written in a while, but I knew April was coming. I pledged I would write every day in April, as I have done in the past.…

I return to this blog, like a long lost friend. Eager to see my fingers sweep across the keyboard. But where do I begin? Like that friend you haven’t seen in so long. There’s so much to say, but you are silent, paralyzed by the decision over where to start. Do you start where you…

I had my ex-husband and his wife over the other night for wine, beer and charcuterie. This doesn’t happen often. In fact, it was the first time. But it was needed and healing. And a bit unreal. Our anxious adult son, who was working at the time, kept texting my ex to ask if everything…

Lately I feel like there’s a clock counting down the days until Brielle is no longer living at home with me and my husband. Even though we have no set day or time or place for when Brielle leaves us and moves into a residential program, the fact that we have been approved for funding…

It was not until I became Brielle’s mama that I realized the incredible bond between mother and daughter. Don’t get me wrong, I love my son just as much. But the relationship is different. Perhaps because of Brielle’s special needs, she and I are closer than I ever thought possible. I feel like I need…

Here’s a piece of advice for my fellow exhausted caregivers: don’t let it consume you. Acknowledge the stress, plan an hour or two or a whole day of stress-free living for yourself, and then look forward to losing yourself in it. I get a break from caretaking every other weekend when my daughter spends time…

Bumps in the winding road. The next chapter begins. It’s the first few chapters of the next book, and it’s fitting. Our lives face a critical stage. For awhile we were on a fun trip, riding a naïve wave that the toughest parts were behind us. But every time we think we have survived the…

Once upon a time, there was a mom. She was a very special mom, with very special kids. She adored and embraced them. They were amazing. Every once in a while, though, she wondered what it would be like to be just a mom. Not special. Just a mom. “You’re really good with children,” a…

I knew they were right, but that didn’t stop the torrent of emotions.

How can we expect our employers and colleagues to understand our work-life balance if they only know the work side of our equation?

This Mother’s Day, Brielle wakes with the roosters. She changes her purple pajamas for pink-and-gray ones. They are put on beautifully backwards, with a big white butterfly on her back instead of her front. The old pajamas are in a pile in her bathroom. Brielle charges into her mama’s room with a Barney DVD in…

What makes me love him so much, is not only that I’m lucky to have him. It’s that he feels lucky to have me.

I wish I had taken Bree on a plane when she was little. By now she would have been a pro. Flying with her was something I talked myself out of doing numerous times, convincing myself the stress was not worth the effort. But I think it would have been. I would love to show…

On a rainy weeknight, as I taught a college class, I returned to my lecture stand and my cell phone while the students did an independent task. “Let me see my daughter,” I text my husband, who is home watching Brielle so I can fulfill a lifelong dream and do this one-semester gig. A photo…

Being a parent to a special needs child is both a blessing and a challenge. My daughter’s gestures and expressions of love bring me immense joy, but I also bear the weight of her struggles. Despite the progress we’ve made, I remain cautious, knowing that her behaviors could resurface. Yet, her moments of happiness remind…

I’m trying to write more. It’s been too long. I’ve had a lot of new followers and made a lot of new friends over the years. So I’m going to reintroduce myself. My name is Stacie, I am a lifelong New Jersey girl. I have been a journalist for more than 30 years. I’ve mostly…

Acknowledging my inevitable mortality was the first step. Planning for her life after my life is no easy task. We are on a waiting list for residential care. I want that care to be in place before I die.

I think they want us to give up. A fellow autism mom said this the other day, and it stuck with me. She was responding to my venting about the difficulty and complications of getting services for our kids. Everything is a fight. Everything. For more than 20 years, I have had to fight for…

It’s amazing how a quick interaction with a stranger can stick with you. Mine came early this morning around 6am when I pulled into Wawa to fill up my tank and get a cup of coffee. I got out of the car asked the guy to fill it up and handed my card to him.…
Today she didn’t feel so blessed. She was tired, angry, helpless, stressed. It’s hard to feel blessed on four hours sleep, Her girl would laugh, she would weep. Waking at three, in and out of bed, Up and down the stairs, she felt dead. Chips, ice cream, spoons and spills, Noodles, butter, kosher dills. Stains…
This past February, I took my adult disabled daughter to get her first vaccine in 17 years. As I pulled into a parking spot at the mass vaccination site, my hands were shaking. My heart was beating fast. This was not a decision I made lightly. For nearly two decades, I have been one of…

I thought I could handle anything. I thought life had thrown me all the hardest curves. And then came 2020. Everything I thought I knew disintegrated as a pandemic swept into town, forcing me to work from home, my daughter’s school to close, my husband’s sales to slow, my son’s anxiety to balloon. Forcing my…

Sending our special-needs kids back to school poses many risks, no doubt. So does keeping them home. It’s understandable to be wary. But the alternative does not solve the problem. In fact, it creates many additional ones. I don’t think any of us expected to be home this long. But here we are, more than…

Even in the middle of a state park, surrounded by 19 majestic waterfalls, signs of Covid-19 were present. Literally. Signs directing visitors to stay six feet apart, to hike in one direction. People wearing masks, keeping their distance. But still, the area offered us the best chance of a brief escape from the lockdown and…

The reality of the new coronavirus hit me about a week ago, when the number of cases in my home state of New Jersey was still relatively low, less than 50, but had possibly reached my town. A mother and daughter were self-quarantining after working a house party in Princeton where several positive cases were…

The Centers for Disease Control and Prevention’s list of people at higher risk to get sick from Covid-19 includes older adults and people with serious chronic conditions like heart disease and diabetes. But there is a whole other population in danger, a group of adults who can’t speak for themselves, because they can’t speak at…

I blinked, and my baby turned 18. The years, the moments have passed too quickly. If I could only go back, I would have written about every one of your smiles, every laugh. I would have photographed all of them and created huge photo albums of you. Every time you grabbed my hand, or did…

The year began with a celebration at our house with friends made over the past few years. Friends who understand me and have gotten to know me better than I have let past friends get to know me. I am honest about my feelings and my struggles. I am myself around them and they love…
It’s moments like these that I’m so thankful for. A minute every morning to watch my girl wake from her slumber. A minute to stare at her beauty. A minute to marvel at all that she is and all that she has yet to be. A minute to wonder what she’s thinking, wonder what she…

This was written a few months ago. Took me a while to hit the publish button. I can’t be anything but myself. I have lost the ability to put on a brave or happy face. People ask me how I have been and I don’t have it in me to lie and say great. I…

Poop is going to be the end of me. It’s also going to be the topic of this post, so if you’re queasy, be warned. Poop is the cause of so much pain, so much stress, for so many autism mamas. So many kids with autism have stomach issues, mine included. Many studies show that…
Just like you, I wanted to be on time. Nineteen years ago, exactly, my water broke. At midnight, on my due date. Sixteen hours later, my first child, my son, was born. And here we are, I blinked and you are 19 years old. When I think of how much you have grown, and struggled,…

I don’t know what happens. One week I’m writing every day, and then I come to a point where I don’t know what I want to say. I mean, I have plenty to say. But I don’t want to write a post that sounds like I’m super miserable and negative, because I’m not. At the…

I was in the bathroom with Bree the other night. We were out to dinner at a nice restaurant for Mother’s Day. It was probably the fifth time we were in the bathroom that night. As I stood in the big stall giving toileting directions to my 17-year-old daughter, a woman came in to the…

This is the post I should have written so long ago. This is the post about the most beautiful women in the world. I’m not exaggerating when I say my two aunts are the biggest influences in my life. And they probably don’t know that because I have done such an awful job of communicating…

I would not be able to forgive myself if I ended April without a blog post about my other half. He has been in my life and my kids’ lives for more than 12 years. I cannot picture our lives without him. When we started dating, my son was 6 1/2 and my daughter was…
I heard “Easy Silence,” a Dixie Chicks song, the other day in the car and I thought of my baby. She’s been away this week at her dad’s house. She loves the Dixie Chicks. As I listened to the words, I thought about that phrase Easy Silence, and I thought about how there’s no such……
I heard “Easy Silence,” a Dixie Chicks song, the other day in the car and I thought of my baby. She’s been away this week at her dad’s house. She loves the Dixie Chicks. As I listened to the words, I thought about that phrase Easy Silence, and I thought about how there’s no such…
When I look back on my years as an autism mother, there are many things I wish I did differently. I regret never taking my daughter on a plane. I regret caring so much what other people thought. And I regret not asking for help. If I had started taking Bree on a plane when…
When the doctor tells you that your child has a disorder with no known cause or cure, and there’s not much they can do to help, you walk out of their office for the last time. Then you embark upon a lifetime journey of doctors and medicines and treatments and therapies, not all of them…

What do you want to be when you grow up? When do you need to grow up? Are you being what you wanted to be when you grew up? Are you supposed to do what you love or do what you know? Can you do both? These are huge questions for all of us, but…
I hear it’s sibling day. So with an apology to my big bro for not writing about him, I want to focus this on the amazing relationship between my son and daughter. Cam is such a good big brother. Every time I see him carry her backpack for her, or grab her hand to keep…
Most of the time, I hate this autism. It has rattled and aged me. I’ve shed so many tears over it, and I’m still here on this endless journey. Beyond the frustrations and the tears, the tantrums and the sleepless nights. The struggles, the fears, the failures and the fights. I’m here today a strong…
Today we set our own little record. I love to go on walks with my girl. There is a walking/running/biking path right near our house. The length of our walks always depends on her mood. There are days we make it out the front door to my car and that’s as far as we go.…
I am taking a pass today. Bree was with her babysitter all day and is now at her grandmas for dinner. I went to the gym, helped my son with his term paper, went food shopping and now I have the house to myself so I am going to catch up on my shows. Pic…

Anyone who just started reading my blog this month must think I am a big crab-ass . Well it just so happens it’s been a crappy April so far. My life is not awful. It’s wonderful. I know you can’t tell that from my April posts. But I’ve been down in the dumps. My life…
I don’t have much to give tonight. I thought the day started well. I slept well, got up, got dressed and ready for work without any interruptions. Got Bree up and she seemed OK. Almost got upset at the top of the stairs, but then got herself together. My plan was to get her on…
I woke up Tuesday morning ahead of my 6:30 a.m. alarm. I got out of bed, wandered into the bathroom and took a shower. Then I glanced at my clock. 2:30 a.m. I can’t make this stuff up. So I took myself, my towel and my wet head of hair back to bed and back…
Over the past six months, Brielle has become super compulsive. It started in our house. At first it was cute! She would put her stuff in the garbage and put her stuff away. A parent’s dream, right? I was grateful to have at least one kid who would clean up. Then we slowly realized she was throwing everything…
Happy April. Here we are again. Kicking off Autism Awareness Month with the first of hopefully daily blog posts. Maybe you will read them. Maybe someone will learn something. Or I help someone. Brielle’s still autistic. Just in case you were wondering. These things don’t go away. As much as I pray. Each year they…
I was getting ready to leave for work early one day when I heard my son’s bedroom door open. He stumbled down the stairs, his eyes half-open, his hair all messy, and stopped in front of me. “What are you doing up so early, bud?” I asked. He had no classes that day. “I wanted to…
This is about the ugliness of anger and denial, and the beauty of acceptance. It’s about anger at the world, at a diagnosis, at a person. I spent so many years so angry about my mother’s death. Decades. I wouldn’t, couldn’t talk about it. I did things I shouldn’t have, and each time I blamed…
TGIF. She is so good with the Camera. We make great Snapchat shots! Quick post. Back from dinner around the corner. The local Italian place was VERY busy tonight. It was just me and my kiddos. I asked for a table by the wall or in the corner and the hostess started saying they were…
A friend was on Facebook the other day, complaining about the screaming kid in front of him at the store. Most of the people who responded were right there along with him, expressing their own frustrations with those kids and their tantrums and how they needed to be disciplined or get the hell out of…

In my daughter’s room there is a mini trampoline, a swing hanging from the ceiling and a ton of toys and stuffed animals. She has had most of the toys for years. They all are “suitable” for children far younger than her. Most of those toys have sat there for weeks, months, years untouched. The wooden six- to…

Twenty minutes after last night’s freakout, she was back downstairs. A smile on her face, asking for a drink. She amazes me. One minute she is screaming, the next she is laughing. I don’t think she knows how to hold a grudge. It takes me a bit longer. I had stopped crying, but I was…
This isn’t the post I was going to publish. That one will have to wait. That one was positive and proud and praising. I’ve been working on it for days. To publish it now I would be a hypocrite. Because I’m crying and sad and angry and I just pushed my daughter to get her…
So much to be grateful for. No matter how tough it gets, or how much I cry or complain or stress, know this: I am blessed and I am grateful. At some point in my life — I’m not sure exactly when but I was well into my 30s — I began to focus less…
From my seat downstairs, I can hear her cry, As she lies in her bed, I don’t know why. Week after week I search for a clue, Maybe it’s cramps, Maybe the flu. Doctor after doctor, Probes and prods her. Maybe it’s a toothache, Or she stubbed her toe, Maybe it’s a headache, What the…

It’s 5 a.m. and I am awake for no reason at all. God is playing tricks with me lately. I used to only be up at this ungodly hour when my daughter woke me up. Lately, she sleeps for the most part, and I’m wide awake. Some early mornings, I read or watch TV. Yesterday, I did yoga.…

I pull my car in my driveway and put it in park. As I open the door to get out, a safety bell dings and a warning message flashes, telling me to make sure I don’t leave my kid behind. It’s a bittersweet reminder that my backseat is empty. One week down, two to go.…

I dropped Bree off at sleepaway camp today, climbed in the car and cried. Partly because I missed her already. Partly because I worried about leaving her for three long weeks. But most of the tears came because I knew that I could not wait to drive out of that parking lot. It has not been…
My son graduated high school. My son is going to college. Never ever say never. Not to me, not to my kids. I am bursting with pride. My boy hasn’t had an easy path. Things that other kids grasp with ease have been a struggle for mine. When he was a toddler, speech didn’t come…

My daughter and I have been enjoying the warmer weather. Walks to the park have become our little thing. Of course they’re not your typical walks or your typical visits to the playground. But they are ours and I cherish them. We hold hands and walk, and once we get to the playground she does…

This one has nothing to do with my kids and everything to do with me. Allow me this space for some self-pity. Writing it will be my therapy, and then I can return to our regularly scheduled programming. My 31st Mother’s Day without my mother approaches. I should be an old pro by now. But…
Most of my posts start with a headline. I write headlines as part of my job and I’ve been taught that headlines are so important; they are what draws the reader in. A good headline gives the reader a hint of what they will read. Tonight is a dear friend’s birthday. She’s a newish friend…

Well, we made it to the end of April. I almost did a post a day. I had the best of intentions, but the past few days got away from me. And my kids were away the past few days! I should have had plenty of time to write. But this past weekend was filled…

If she sleeps, she pees. If she pees, she sleeps. That is my current state of affairs. My daughter has had sleep issues for as long as I can remember. She also has nocturnal enuresis — a fancy term for involuntary urination while sleeping. I have tried just about everything to solve both problems. When…

We sat on the kitchen floor after I pulled out her favorite book. I was trying to prolong her going to sleep. It was kind of early and I was not in the mood to get up at 4 a.m. again. Monday are always kind of rough for my daughter. She comes home from school…

I was looking through old photos over the weekend and I came across one of me carrying my daughter with one hand and pushing a double stroller with another. We were at a local fair, my son must have been off running around with his dad or his grandma. That photo was taken when my…

What causes autism? It’s a question I’ve been waiting for scientists to answer for more than 15 years. Plenty of people and studies will tell you what doesn’t cause it, or tell you what increases the chances of your kid having autism. But the precise cause remains unknown. I’m a journalist. If there is a…

They don’t scream because they like the sound. They scream because it’s the only way they know to make themselves heard. My daughter typically is a happy kid, as far as autism goes. I literally just knocked on wood — I do so every time I say something is good, as if that will prevent…

You think I’m pretty special? I’m nothing compared to my daughter’s teachers. I do what I do because she’s my child. I have to. She’s my heart, my creation. Her teachers choose to do this. And I’m grateful for each and every one of them. My daughter is blessed to be a student at an…

I love quality time with my kids. Just as much, I love quality time without them. That doesn’t make me a bad mom. It makes me a better mom. My kids spend every other weekend with their father in the adjacent state where he lives with his second wife and their daughter. Back home, I…

The other day, I crawled into her bed as she watched a Sesame Street DVD, just to keep her company. As I read my book, she stared at me. Each time I looked over her, she smiled and made quiet little happy noises. I adjusted my arm so she could put her head on it.…
I decided a long time ago not to fix my daughter’s two protruding front teeth. When she was about 9 or 10, we had an unfortunate event with an ignorant lady at a restaurant, who made fun of my daughter’s buck teeth, by making bunny faces to her daughter. It was the first time I…

I’m kind of an expert in non-verbal communication. I can tell what my daughter wants without one word spoken. I can tell by her noises or gestures whether she wants to go to bed, or wants a drink or some ice cream, or needs help with her DVD player. I’m usually grateful to have such…

As my son takes his college placement tests, I sit in a waiting room next door thinking about how we got here. High school wasn’t easy for my kid. Not much is easy for my kid. But he will be graduating in June and attending a great community college in September. My pride is immeasurable.…

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” Martin Luther King Jr.
How do I love thee? Let me count the ways. I love thee to the depth and breadth and height my soul can reach. (Elizabeth Barrett Browning.) I love you every second, every minute, every hour. Your laugh is the sound that paints a smile on my face. Your smile is the sight that warms and…

Dear Brielle’s counselors, Hi! This is Brielle’s mom! I apologize in advance. This letter is going to be long. But this is the first year that Brielle is going to sleepaway camp for three whole long weeks, and I’m a nervous wreck. Just imagine what it must be like to send your non-verbal, mentally…

My life as an autism mama consists of not enough sleep, a lot of cleaning and cooking, some anxiety drugs and an occasional glass of wine or vodka/club. From time to time it includes tantrums, screaming, middle-of-the-night awakenings. It is what it is. I can’t imagine it any other way. Because it also includes love and laughter, hugs and…

Ten years ago, I met the jackpot of men. I didn’t know it at the time. He was just a guy from my town, a friend of a friend. I was a single mom of two kids with special needs, tired of speed dating, tired of mating games, fed up with trying to be something…
My dearest daughter, Today you turn 15! I close my eyes and I can picture you when you were small enough to hold in my arms. Your little blonde curls, your tiny, dainty fingers, your big brown eyes. I can still hear that beautiful toddler giggle you made when you were being tickled or chased and that…

I often say writing is my therapy. God I hope this blog post does the trick. Three times yesterday, I found tears running down my face while at my desk. Once, I started hyperventilating. I’m sure my colleagues saw. I pretended they didn’t. I’m overwhelmed. The weight of the world sits on my shoulders. Usually I’m a master…
The other day, my daughter told me she had a sore throat. And I cried. At least I think that’s what she told me. Amid a crying spell, Brielle grabbed my hand and brought it to her mouth. “Does your throat hurt?” Again, she grabbed my hand and brought it to her mouth.…