Tag: parenting

  • The Value of Lived Experience

    The Value of Lived Experience

    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.

  • From One Autism Mom to Another Autism Mom (or Dad)

    From One Autism Mom to Another Autism Mom (or Dad)

    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…

  • Letting Go While Holding On

    Letting Go While Holding On

    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.

  • The Challenges of Autism: A Mama’s Perspective

    The Challenges of Autism: A Mama’s Perspective

    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…

  • Restless Mind

    Restless Mind

    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,…

  • Raising Twins with Autism: A Family’s Journey

    Raising Twins with Autism: A Family’s Journey

    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…

  • Soul Fatigued

    Soul Fatigued

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

  • Her Home

    Her Home

    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…

  • Life in Transition

    Life in Transition

    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…

  • April Rains

    April Rains

    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.…

  • The Ties That Bind

    The Ties That Bind

    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…

  • The Clock Ticks

    The Clock Ticks

    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…

  • Invest in Yourself

    Invest in Yourself

    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…

  • Just Mom

    Just Mom

    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…

  • Happy Medicine

    Happy Medicine

    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…

  • Mixed Blessings

    Mixed Blessings

    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…

  • Where It Began

    Where It Began

    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…

  • A Never-Ending Anxiety Attack

    A Never-Ending Anxiety Attack

    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.

  • They Want Us to Give Up

    They Want Us to Give Up

    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…

  • Midnight Sharp

    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,…

  • Friday nights

    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…

  • Quiet Time

    Quiet Time

    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.…

  • Milestone Moment

    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…

  • Lesser of Two Evils

    Lesser of Two Evils

    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…

  • Waiting room thoughts

    Waiting room thoughts

    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.…

  • Just as Amazing

    My first-born asked me the other day why I didn’t write about him like I wrote about my daughter. I had no good answer. Maybe I thought he would be embarrassed. Maybe I was trying to protect him from this cruel world. He is just as special, just as inspiring, just as amazing. And he, too, faces…

  • My Bittersweet Birthday

    I turn 42 today. That’s the age I’ve been dreading for as long as I can remember. When I allow myself to think about it, as I force myself to do now, the reality of it makes my hands shake, takes my breath away. Here I am, the same age my mother was when she…

  • Here Comes The Hate Mail

    Here we go. I’m putting it all out there. Once and for all, I’m going to try to explain why I don’t vaccinate my child. I’m prepared for the hate mail. It wouldn’t be the first time I’ve been called names while talking about this subject. Bring it. But before you prepare your hate-filled response, I…

  • Superwoman

         Please don’t call me Superwoman. I know you mean well. You all do. But I’ve been hearing it for far too long, and staying silent.      “I don’t know how you do it,” you said, and I just smiled and said nothing. Oh, so many times. I’ve heard it, stayed silent. No More. You…

  • Brielle’s Voice

    I want to tell you the story of a beautiful little girl named Brielle. Brielle was born on a February afternoon in 2002. She was full term, 7 pounds 13 ounces, a perfectly healthy bundle of joy who instantly brightened my world. Brielle reached all her milestones like other babies — she sat up at…