WELCOME to the 2025 BLOGS
Join us on this journey towards growth and discovery. ROCCOSJOURNEY is dedicated to providing a supportive and nurturing environment. We will try to catch you up on our experience and on what you've missed. So, come along with us on this journey of a lifetime.
2025
The Year We Realized Control what we can and Ce' La Vie the rest!
How We Survived 2024 (and the start of 2025)
The truth is we barely did. I was diagnosed with a very rare disease and Rocco was placed into a intensive inpatient care facility (he's home now). The entire year was full of hospitals, feeding tubes, surgeries, missed holidays, and wishing for a lot of peace. The New Year has brought chaos but a lot of hope! One thing it inspired was a new book and a spark to continue writing! So please enjoy the new adventures of the Full Spectrum Mom!
A Sister's Wish
What if we could hear every wish our children make from behind closed doors? As a parent, I consider myself fortunate to have caught a glimpse of one such moment, a reveal of innocence. It was a seemingly ordinary day as I stood in my living room, folding blankets, when I overheard my autistic daughter, Lily, coming from the bathroom. She was speaking to "Santa" and "Mr. God", sharing her wishes with a sincerity that stopped me in my tracks.
As I listened, I held my breath when she proclaimed, “I wish mommy's belly would heal so she could jump on the trampoline, and I wish Rocco, her profoundly autistic brother, could talk so he could tell us when he’s in pain.” In that moment, I was struck by her selflessness—there was not a single wish for herself. Instead, her heart overflowed with concern for others.
Unable to contain my emotions, I gently knocked on the door and let Lily know I had overheard her wishes. She wasn't upset but rather intrigued, asking if I believed those hopes could come true. I explained that she was completely selfless, that we could indeed work towards making them a reality.
Lily’s face lit up as she then confessed those were always her wishes—on every candle, eyelash, and dandelion. This innocent ritual of wishing reflected a depth of empathy that many adults overlook. In a world where we can become overwhelmed with our own desires and goals, her example serves as a gentle reminder of the beauty in wishing for the happiness and health of others.
If only more adults could harness such wisdom in their wishes, focusing less on personal gain and more on the welfare of those around them. Perhaps, if we embraced the purity of a child's heart, we might transform our wishes into hopes that ripple outwards, creating kindness and compassion in our communities.
These moments of clarity from our children that reveal the true essence of what it means to wish—blow out your candle!
What if we could hear every wish our children make from behind closed doors? As a parent, I consider myself fortunate to have caught a glimpse of one such moment, a reveal of innocence. It was a seemingly ordinary day as I stood in my living room, folding blankets, when I overheard my autistic daughter, Lily, coming from the bathroom. She was speaking to "Santa" and "Mr. God", sharing her wishes with a sincerity that stopped me in my tracks.
As I listened, I held my breath when she proclaimed, “I wish mommy's belly would heal so she could jump on the trampoline, and I wish Rocco, her profoundly autistic brother, could talk so he could tell us when he’s in pain.” In that moment, I was struck by her selflessness—there was not a single wish for herself. Instead, her heart overflowed with concern for others.
Unable to contain my emotions, I gently knocked on the door and let Lily know I had overheard her wishes. She wasn't upset but rather intrigued, asking if I believed those hopes could come true. I explained that she was completely selfless, that we could indeed work towards making them a reality.
Lily’s face lit up as she then confessed those were always her wishes—on every candle, eyelash, and dandelion. This innocent ritual of wishing reflected a depth of empathy that many adults overlook. In a world where we can become overwhelmed with our own desires and goals, her example serves as a gentle reminder of the beauty in wishing for the happiness and health of others.
If only more adults could harness such wisdom in their wishes, focusing less on personal gain and more on the welfare of those around them. Perhaps, if we embraced the purity of a child's heart, we might transform our wishes into hopes that ripple outwards, creating kindness and compassion in our communities.
These moments of clarity from our children that reveal the true essence of what it means to wish—blow out your candle!
Restoring The Routine
6/4/25
"...and they're off." Those words mark the beginning of a fleeting quiet, I watch as my children head off to school, bringing with them a whirlwind of energy and noise. Having two special needs children, one with profound autism, is time consuming and requires a strict routine. The hours that follow them leaving for school feel like mere minutes, a precious reprieve that I never take for granted. However, the time away is not a chance to unwind; it serves a vital purpose: restoring the routine.
Once the chaos of getting them to school subsides, the real work begins. I find myself in a race against time, slotting back each piece of our day into place. Everything must be returned to its designated spot—figurines find their way back to their dedicated pillow position, dolls are placed in their carriages, and snacks need to be placed on the table, all in preparation for their return. This restoration process is crucial; it helps maintain the rigidity that keeps meltdowns at bay, at least those I can control.
While engaged in this routine, I also tackle the multitude of "normal" housework tasks that inevitably pile up. The laundry must be washed, dishes cleaned, surfaces wiped down—tasks that feel mundane but are essential in keeping our home environment calm and welcoming. Alongside these responsibilities, I can't forget the cascade of communications: phone calls, emails, texts, scheduling and confirmations that need addressing throughout the day.
The importance of these small details cannot be overstated. Each figurine returned to its rightful home and every snack perfectly placed play a pivotal role in calming the atmosphere for when my children arrive back home. It’s a meticulous dance of careful planning, and this routine is one I engage in every single day.
However, this daily ritual complicates the logistics of scheduling any extended activities that take away from my responsibilities. There is a unique challenge in balancing the demands of household maintenance with the desire to create and explore outside of my daily routine. The need to restore the routine becomes a consistent reminder of the unpredictability that comes with caring for special needs children.
The moments of quiet may be fleeting, they serve a significant role in allowing me to restore order in our home. It is an ongoing juggling act between maintaining stability for my children and managing the inevitable demands of everyday life. Each day brings its own triumphs and challenges, but through it all, the most important part, restoring the routine.
Morning Madness: School Prep
6/3/25
Every morning, without fail, I dread the build-up to what I have come to call "morning madness." As the clock slowly approaches that fateful time when I must get my children ready for school, my heart races. With two special needs children, particularly Rocco, who has profound autism, preparing for school feels akin to trying to catch a cat, bathe it, and dress it in a costume—a chaotic nightmare filled with scratches and heart-wrenching screeches.
To manage Rocco's meltdowns, I have resorted to hiding the backpacks. Just a glimpse of those bags can trigger an instant emotional outburst. Rocco has become wise to the morning routine; he refuses to allow me to change him, whether it’s his shirt or pants, guided by the realization that dressing means it’s time for school. When afternoons come, or on weekends, he is a sweet and compliant child. However, mornings bring a stark transformation; even when he is soaked, he will resist with all his might. His determination leaves my weary body fighting a losing battle, often resulting in me ending up on the floor or the couch, utterly spent.
While I grapple with the task of preparing Rocco—battling with brushing his teeth, applying deodorant, and attempting to style his hair—my daughter, Lily, also requires my care. Once she has chosen her clothes, she frequently needs assistance with her teeth and hair as well. Yet the requirements do not stop at physical care; every morning we also engage in affirmations and discussions about the day ahead. However, this much-needed connecting time is frequently interrupted by shouts, crying, and the myriad demands of the morning rush. My own physical limitations further complicate things, necessitating breaks to manage my own fatigue. This entire symphony of morning chaos unfolds in a mere 30-minute window.
Despite rising two hours before school begins, I know that trying to start preparation too early makes both of my children anxious. When the van pulls up, uncertainty looms over whether Rocco will even leave the couch. Over the years, I have tried various strategies: placing the backpack prominently in view, moving it to a hidden spot, packing it right outside the door, and even allowing him to bring his favorite toys and snacks. Nevertheless, getting Rocco to the van is often a struggle that leads to screaming, dead dropping, and an overwhelming torrent of chaos.
Each morning is defined by this madness. The gut-wrenching nature of these routines leaves me in a state of anxiety, filled with the unpredictability of what the morning will bring. Yet, amidst the incessant struggles, I have come to realize that these chaotic moments define my life. Each instance shapes my experience as a mother, characterized by love, frustration, and resilience.
Although mornings may appear to embody madness, they are our madness. This unique journey, riddled with challenges and fleeting moments of joy, profoundly impacts who I am and the life I lead. Despite the chaos, I embrace the unpredictability of each day.
Madness.
Self-Care: To An Autism Parent of Two I Don't Understand The Assignment
6/2/25
As an autism parent, I have frequently found myself neglecting my own needs, prioritizing my family's well-being over my own. This cycle of self-neglect has been ingrained in my routine for years, often leading me to sleep on the couch or sometimes even the floor. The physical repercussions of this choice have been profound; I have experienced body aches, hair loss from malnourishment, and brittle nails. This was even prior to my diagnosis. Days have passed without me even realizing I forgot to eat. This relentless hustle of managing schedules and meetings often leaves little space for self-reflection, eventually causing me to lose sight of my own identity. I'm unable to work and still can't seem to find the time for self-care, but plenty of time to feel worthless. I bring nothing to the table as far as contributions to the household monetarily.
When I gaze into the mirror, I often wonder, "Who is this person looking back at me?" I question when I last took the time to have my hair or nails done or even slept peacefully in my own bed through the night. It strikes me how seldom anyone checks in to see what I might need. Even during my so-called "breaks," where I might steal a moment on the couch, my mind races faster than that lizard who runs on water, reminding me of all the responsibilities waiting for my attention.
Since my diagnosis, each day has presented me with a new set of challenges that seem to multiply the strain I already experience. This has made the concept of self-care all the more essential yet complex. Do I even deserve it since I don't bring any finances into the home? What does self-care truly mean? Is it merely taking a shower without children interrupting? Or simply enjoying a quiet car ride to grab a coffee and sitting in a park with a good book? I have come to understand that chores, like grocery shopping or cleaning, do not constitute self-care. Instead, they serve the needs of the family without fulfilling my own.
This realization leads to an essential question: when was the last time I genuinely cared for myself? When was the last time someone else cared for me? In a world that often overlooks the caregivers, it’s imperative that we, as autism moms, put ourselves back on the list of priorities.
Self-care should not be viewed as an indulgence, but rather a necessity—an act of self-love that empowers us. It is the time we take to replenish our spirits and reclaim our identities. Whether it is indulging in a long bath, enjoying a moment of solitude in nature, or simply allowing our minds to relax (if that's possible), these acts can reinvigorate our lives.
Rediscovering the essence of self-care is both a journey and a commitment. As autism parents, let us challenge ourselves to prioritize our mental and emotional well-being, finding beauty and strength within our commitment to take care of ourselves. After all, when we nurture ourselves, we can better nurture our families.
The Odds Of Love
6/1/25
Raising children is a daunting task under any circumstances, but for parents of special needs children, the challenges can often feel insurmountable. As a parent of two special needs children, one of whom has profound autism, I have experienced firsthand the extent of these challenges, especially in light of my own health issues. Yet, it is through the unwavering support of my loved ones that I have navigated this difficult journey.
The journey of parenting special needs children requires immense resilience. On days filled with uncertainty and stress, the importance of a strong support network becomes evident. My parents have played a crucial role in providing emotional and practical assistance. However, the anchor in my life has undoubtedly been my husband. He embodies strength, love, and dedication, stepping up in ways I never could have imagined.
Despite the hurdles we face daily, we have found ways to laugh and connect. Humor has become a vital tool for coping with the stress we both carry. It’s not always easy, but finding joy in our shared experiences allows us to maintain our sanity amidst the chaos. The gravity of our responsibilities can be overwhelming, especially during prolonged hospital stays where care for our children becomes a team effort. During those trying times, my husband took on the mantle of primary caregiver, ensuring that our children were loved and cared for while I dealt with my health issues.
The statistics surrounding couples raising children with disabilities paint a bleak picture; many do not last. However, I have come to realize that statistics fail to account for personal narratives—like ours. Together, my husband and I have proven that love and determination can triumph over the challenges we face. We do not let the odds define us. Instead, our desire to provide a loving home for our children drives us to persevere.
Through the struggles, the love we share motivates us. We carry a significant load, yet we do it not just for each other but for our children who inspire us every day. In a world where societal expectations often overwhelm us, we choose to create our path. Our story is not merely one of adversity, but of love, commitment, and resilience.
This journey of raising special needs children can be daunting, but the power of support and unwavering love is transformative. With the help of family, especially my husband, we have embraced our unique challenges. Despite everything stacked against us, we continue to move forward together, demonstrating that love knows no bounds.
The Pain In Communication
5/31/25
One of the greatest heartbreaks for any parent is watching their child suffer. This pain is amplified for the parents of children with profound autism, where communication becomes a seemingly insurmountable barrier.
Rocco is typically unbothered by the everyday aches and pains that other children might express. However, the severity of his discomfort recently became evident in a striking and alarming manner. Yesterday, as I prepared to dress him for school, he resolutely refused to allow me to put his clothes on him. This was not typical behavior; it was my first inkling that something was profoundly wrong.
In the frantic moments that followed, I decided to check his temperature. The discovery of a fever was alarming, but it was the hours that followed that truly tested my resilience as a parent. There I was, kneeling next to him, tears streaming down my face, as I attempted to coax him into drinking fluids and taking medicine. I desperately wanted him to understand that I was there for him, that I recognized he was suffering.
When I looked into Rocco’s eyes, I saw a reflection of despair that pierced through my heart. It was as if he was silently pleading for help, caught in a cycle of communication that felt impossible to navigate. The absence of words often leaves a void filled with fear and heartbreak, especially when it comes to alleviating suffering.
As a parent, it is unbearable to witness your child in pain, especially when time and time again, you recognize that they cannot express their feelings as most do. Each moment becomes a lesson in patience and love, as I innovate new ways to support Rocco through his discomfort.
Today, I am grateful that Rocco woke up back to himself, full of life and energy. However, I am acutely aware that this journey is far from over. The challenges ahead are daunting, and there will undoubtedly be more moments of struggle. Yet, I remain committed to being his advocate, his voice, and his unwavering support.
The road ahead may be unpredictable, but my love for Rocco is constant and binding. Together, we face each day, ready to conquer the challenges that arise, equipped with hope and determination.
In essence, the journey of a parent to a child with profound autism is filled with heartbreak, but it is also a testament to resilience and unconditional love. For every painful moment, there are also small victories that nurture our bond and strengthen our journey together.
Piece By Piece
5/28/25
How am I learning to love myself again? The answer is simple yet subtle: every day, slowly.
Life has flipped upside down three times in the past decade in ways that no one prepares for. Two of my children have been diagnosed with autism—one with profound challenges. In addition, I faced my own diagnosis of a rare, life-threatening illness. Throughout all these years, I maintained what I call a "post-perfect" appearance, projecting strength and happiness outwardly, even as I was slowly breaking inside.
Little by little, the cracks formed—I hardly noticed them at first. Some days, the pieces of my unraveling were bigger than others. I convinced myself that if I just kept pushing to feel happy, I would eventually achieve that elusive state of joy. But this belief proved to be a mirage.
Then it happened—on an ordinary day, amidst the chaos of life, Rocco experienced a severe meltdown. In a moment of emotional turmoil, he lashed out at me while Lily desperately tried to intervene. Time stopped, in that instant, I broke. Reality hit me: I realized just how bad our situation had become, how dangerous the pressure I had put on myself to appear strong truly was. It was an overwhelming revelation.
Within a day or two, I knew what I had to do. No more. It was time for my family—and for me. Almost immediately after that decision, I felt a weight lift. The pressure I had imposed on myself dissipated, leaving me feeling… free.
I began to breathe again. For so long, I had fought so hard for inclusion, acceptance, and to spread education that I had lost sight of living in the moment. I was racing to ensure children like Rocco were seen and helped, but this fervent push was taking a toll on me. I had become a shell of myself—a shell I no longer recognized or even liked.
I've come to learn that I don’t need makeup, fancy nails, or a polished appearance to create change. That change must start with me. I let go of the anxiety that came from trying to appear "perfect" all the time. I am grateful to accept that it’s okay not to have it all together.
We don’t enjoy life like other families—weekend vacations, trips to the beach, even a day at the mall—those options are outside our reach. So, instead, we create moments of our own, in our own way, and only the way we can.
As I embrace this new version of myself—the liberated me—I am learning how to love myself. This is the me who can truly breathe. This is the me who has discovered that I have always been "post-perfect"—just in a different way.
I love this new me. Well, I’m learning to.
One day at a time.
Lost At Sea: Special Needs Paperwork
5/27/25
The amount of paperwork a special needs parent faces daily is nothing short of surreal. Just the sheer volume of documents can be overwhelming, but add in the emails, phone calls, messages, and meetings, and it feels like navigating a labyrinth. The ability to remember even the most crucial details becomes an insurmountable task, especially when you have two children with completely different requirements.
Today was particularly challenging. The system is a tangled web of services; you can have one but not the other, and each decision seems to come with strings attached. Once you sign over a service, you may inadvertently lose another. Promises of more assistance dangle just out of reach, often months away, leaving us in a perpetual state of uncertainty. In this reality, every decision feels like a gamble.
But here’s the truth: My children are not a gamble. Their needs are not negotiable stakes in a game of chance. The complexity of services should not dictate the care they receive. My son’s meltdowns happen multiple times a day; they do not wait for the bureaucratic process to catch up. So why should we?
It feels infuriating to be immersed in this ocean of paperwork that often leads to a dead end. Lost in that profound 27% of the system, unspoken of, I refuse to let my children become just another statistic. I won’t allow them to be forgotten.
As a parent, the overwhelming weight of responsibility lies on my shoulders, and I will advocate fiercely for their needs. I will push back against the system, demanding that it prioritize the well-being of children like mine. It shouldn’t be this complicated—access to essential services should be immediate and fluid, not riddled with obstacles.
In conclusion, the daily challenges of special needs parenting are daunting, but I stand firm in my commitment to fight for my children. They deserve better—because they are worth every ounce of struggle and every piece of paperwork I tackle. On my watch, they will not be overlooked. Plus it's totally not worth the papercuts!
Perfectly Imperfect Summer
5/25/25
I'm standing by my front window, soaking in the sounds of laughter from neighbors celebrating the start of summer, the aroma of BBQ wafting through the air, and the sight of cars lining the street. It’s a vivid reminder of Memorial Days spent lounging by the pool, beginning the long journey to that sun-kissed tan. But in a split second, the sweet nostalgia fades—a loud vocal stim followed by Lily's voice asking with her puppy dog eyes if we can play school yet.
I have to remind her that I’m waiting for Rocco to calm down after his latest meltdown. It’s a bittersweet irony; while this weekend marks the start of summer fun for many, it also signals the end of my daily respite when Rocco returns home from school, leaving only the brief stretch of Extended School Year (ESY) programs in its wake.
I reflect on how our lives differ from those of the families around us. Spontaneous BBQs and gatherings are luxuries we can't plan for. As I glance at my children, I acknowledge the reality of our adjusted life, and yet, the weight of unmet expectations feels heavy. This isn't the idyllic summer I once envisioned. It’s okay for me to grieve the dream of carefree family outings, of dressing Rocco in matching outfits for a sunny picnic. Instead, I face monumental meltdowns over something as simple as choosing a shirt.
Yet amidst the quiet chaos, we'll embrace the little moments. Our safe home becomes a haven where familiar routines evoke joy and comfort. For now I'll just stand by the window and breathe in the smells, cherishing the lucky parts of my life—the boundless, unconditional love that envelops us.
But you know, if you've got any extra ribs lying around!
We may not have the perfect summer BBQ, but we always have room for a little bit more love at our table.
In The Blink Of An Eye
5/24/25
Being a parent to a child with profound autism brings a level of exhaustion that is difficult to encapsulate in words. It's not just the physical toll of sleepless nights and constant movement; the struggle permeates the very essence of our being—mentally, emotionally, and socially. Our bodies are in a relentless state of fight or flight.
Today epitomized this unending struggle. We were engaged in a moment of joy—action figures in one hand, my son's laughter bubbling forth as though his toes we're being tickled, munching on french fries. In what felt like the blink of an eye, that joy transformed into chaos. The fries were hurled, my son was banging his head against the iPad with enough force to crack its screen, and figurines were thrown under the couch.
The screams that followed were heart-wrenching; they clawed at my soul. I found myself pleading for words—to understand what was causing his distress. In a moment of desperation, I rubbed his belly, hoping it would be a simple discomfort. If only he could just point to the pain... But for twenty agonizing minutes, all I could do was wait and hope.
Then, as if someone flipped a switch, the giggles resumed, and it was as though that turmoil had never occurred. My heart, which felt like it had been ripped from my chest, somehow mended in the blink of an eye. The anxiety that had shot through me dissipated, and the room returned to normalcy—despite the chaos still surrounding us.
In these moments, we learn the true meaning of resilience, both in ourselves and in our children. It’s a continuous cycle of joy and struggle, of understanding and misunderstanding. We emerge from each episode, weary yet determined, navigating a world where words often escape us but love and connection endure.
Our fight may be invisible to others, but it is ever-present, a dance between calm and chaos, marked by an unwavering love and relentless hope that someday, communication will be a bridge, not a barrier. Through it all, we make it—one day at a time. Until then, it's all in the blink of an eye.
Full Spectrum Mom
5/23/25
Every day unfolds like a vivid tapestry woven with both beauty and challenge. As a Full Spectrum Mom, my life is a whirlwind of surprises, sudden turns, and moments that can leave your heart racing. With a high-functioning 8-year-old daughter and a profoundly autistic 9-year-old son, our home is a vibrant symphony of imaginative play, loud tics, stimming, and many the meltdown. It's an experience that might sound chaotic to some, but to us, it’s simply life.
In our household, loud laughter mingles with the sound of beloved movie lines recited on repeat, and repeat. It’s not uncommon to witness our son engaging in his unique behaviors while our daughter immerses herself in vast worlds created by her imagination. These moments are filled with organized chaos—where diaper changes meet gentle reminders to be kind, and where the clatter of toys serves as backdrops to tender sibling bonds.
There’s no denying the emotional toll of grappling with the daily demands inherent in our lives. We often find ourselves in a constant state of fight or flight. Therapists have become like family, frequent visitors sharing our daily lives and contributing to our modern tribe. The rare outings are cherished; our days tend to blend into a beautiful yet exhausting routine, and while our friends have dwindled, those who remain are truly understood and appreciated.
Navigating the school system is akin to a rollercoaster with no safety harness. Each battle for our son to receive a fair education revolves around ensuring he learns essential life skills, not merely adhering to the conventional educational framework. Our advocacy focuses on what matters most—the ability to dress himself, to communicate, and to thrive in the world. Meanwhile, our daughter grapples with her own set of challenges, feeling the immense pressure to mask her struggles despite her good grades. The issue of masking in girls is often overlooked, and I find myself fighting not just for my son’s future but also for my daughter’s emotional well-being.
As a Full Spectrum Mom, I have the privilege of viewing the complexities of autism from multiple sides of the spectrum. It’s true what they say: “If you’ve met one person with autism, you’ve met one person with autism.” Every individual offers a unique lens through which to understand this diverse condition. It serves as a reminder not to generalize, to celebrate the differences, and to embrace the lessons learned.
And so, I find beauty in the chaos, gratitude in the struggle, and joy in the kaleidoscope of everyday moments. Yes, I am blessed, yet tired—a Full Spectrum Mom in every sense! The challenges make the joys more poignant, and every laugh, every hug, and every small victory deepens my love for our family. Each day until the sunset, I’ll continue to be their champion, creating space for their magic to unfold while navigating this extraordinary adventure. But please, send coffee!
FOR SOME BACK STORIES! Enjoy the read!
Smile...because I AM HERE!
May, 26 2020
So I want to use today (after speaking with Rocco and Lily's hospital case manager as well as Rocco's one-on-one aide) to discuss working with special needs children from home and caregivers mental health - ESPECIALLY during a time when there are really no moments for a break.
As someone who has (and yes, sometimes suffers) from BiPolar there are horrible, horrific days. Are they unbearable, yes. Do I get through, yes. Do I also have awesome days... HELL YEA!
Not because I am special but because I can ask for help.
That isn't a sign of weakness, but strength. Did it take a long time to do this.. yes.
It is HARD to ask for help. Some people don't know WHO to ask for help. They don't know where to ask for help.
I am telling you now.
I AM HERE.
This is one of the most difficult times for those that suffer from mental health issues.
Do NOT be embarrassed. I have had days I didn't want to get out of bed. I've cried because I lost my pen cap. I have cried because I can't find Rocco's favorite chips. I have cried because of Autism. I have cried because without my medication I couldn't have a functioning life. I smile because I am the BEST mother I can be. I smile because I have the BEST support system I could ask for. I smile because I HAVE THE MOST AMAZING, BEAUTIFUL, WONDERFUL KIDS I WOULDN'T CHANGE FOR THE WORLD!!!
I smile because I can do this... not alone... but I can do this.
Please, I am here.
Smile, because I AM HERE!
Share Your Jump For Joy
April, 21st 2020
Since the day that I ate cake I knew you'd love to jump.
In my big ole tummy growing, what a bouncy lump.
As you grew so did your jumps, like when you heard your jam!
Any rockin' Disney tunes, my happy little man.
Then out you came it wasn't long until that jump did start..
In your saucer you would bounce- you'd never be apart.
Then you found your own two feet and got them off the ground
The only place, up in the air, is where you could be found.
Bubbles were up in the air and quickly you'd go too!
Moana's on? Well ok! We know what you'll do!
Then there is Zootopia! Those big hops that you give,...
Oh boy and that trampoline, where you wish you could live!
You jump into that wild wind, the air whips in your face...
It's that joy within your jumping no one could replace.
You exude a happiness your very special way,
It's present now, present before, present everyday.
So please sweet son, my dear sweet boy,
All I ask - Share with the world -
Share Your jump for joy!
The Day You Were Born I Came To Life...
March 8th, 2020
Its hard to write something special about the day Rocco was born because I don't remember much of it! What I remember are the many days of worry before. Cradling my belly and wondering if I would be a good mother. Standing in the middle of his future room and hoping that it would be enough. Looking at his little clothes and hoping he'd come home healthy... The next thing I remember is cradling him in my arms knowing that no matter what as long as we had love I would be a good enough mother. Standing in the middle of his room knowing that nothing in there mattered as long as we had love. I remember dressing him in those little clothes knowing that he was healthy and no matter what the future brought us our love was unbreakable. The day of his birth was important yes, but it was the days after that meant so much more. It is the day of our child's birth that begins an amazing journey for you both. So yes, I am grateful for today, but I'm far more grateful for everything that has come after. Because Rocco, the day you were born, I came to life.
I Do Know An Angel...
February 12th, 2020
Don’t click away!
I know I know… you see some post about Angels and you either go, “Oh MY GOD! ME TOO!”, or you are the one going, ‘Oh, she’s one of those!”
Just hear me out. OK?
So, I had a lot of issues, won’t go into details, but the probability of me having kids was like Brad and Angie staying married… not so much. Turns out, miracles happen. Also, doctors are NOT Gods. They are wonderful to have; they just don’t get the final word.
Here is where the Angel thing starts to happen… DON’T LEAVE…
I had Rocco – didn’t know he was autistic yet, just a giant pain in the baby ass. I was cranky, moody (yes, more than usual) and after 8 months I had NO idea why my gas was kicking me. You guessed it. This sneaky little thing was 21 weeks along! I used to make fun of those women who didn’t know they were pregnant until the kid was falling out. I was one of them! I called the doctors with all these symptoms I was having, and they were right along with having just had a child. I wasn’t gaining weight because I was breast feeding and I was “sick”. Turns out I had morning sickness all during the day.
So I had a one year old and a newborn!
Little did I know that this sneaky little girl I nicknamed “My Angel” would turn out to be the real deal. NO! I don’t want to lose you yet!
By now Rocco was just starting to show the signs of autism. I had a newborn, was watching my son go through his first regression, and I was entering a severe state of post-partum.
At Lily’s first well visit the doctor walked in and Lily’s face lit up. It was a smile. Of course, I was used to the ugly little face and mouth full of gums (yes, I can say she was ugly – not all kids are cute! I mean, yes, she was a cute little lump of skin ok!) And I’ll never forget the doctor saying she was shocked. That almost NO babies smile that young. She was excited to mark that in her report. I just thought it was normal. I think it was THAT moment it clicked somewhere. This kiddo, something was special.
Time passed and as Rocco regressed, he never really acknowledged his sister (but he also never pushed, hit, or was aggressive towards her). Lily NEVER let that phase her. During his tantrums she didn’t leave his side. He’d cry and Lily would bring him his favorite toys or quietly place his bottle nearby. There was a bond. It was silent and hard to see at first. But this bond would prove incredible.
One day he was in tremendous pain. His head. As I watched from the other room, I saw him laying on the couch and Lily came up behind him. She gently placed her hands on the back of his head and lowered hers down. They just stayed like that… for minutes. Still. As fast as it happened is as fast as it was over. She is his healer.
Rocco may be older, but Lily has begun to help him without our direction. He comes in the door from school and helps him take off his coat and shoes. She tells me what he wants to watch.
If he won’t take food from me, I leave the room and peek back – it never fails. She is handing him the same food and he’s taking it.
She won’t do anything unless Rocco is taken care of first. If we go out shopping and she picks out a toy – and Rocco? When he does something, the littlest thing, she claps and cheers him on! Jumps with two feet? GO ROCCO! Throws a rock far? YAY ROCCO!
Lily is only 2 ½ and has better qualities than many adults I know. She knows unconditional love, compassion, and complete non-judgement. She sees him as this incredible kid and just adores him. She doesn’t know what disability is. If we could all be a little more like her this world would be amazing. So, you see?
I DO know an Angel, I just call her Lily.
I Won't Breathe
February 4th, 2020
Don't Sneeze...DON'T SNEEZE!
It's that feeling when your entire head is going to pop...then that tickle in your throat and you have to cough...NO! It's in your mind. IT'S IN YOUR MIND! Don't you DARE cough...
He's finally sleeping...Shhh...
Do NOT do it...
You hold it in with ALL your might....
It passes...
PHEW...
Mission passed! He's OUT!
That face...his breathing paced so calmly...his body lay so heavily...relaxed...nothing like when he's awake... his mind is at ease.
I would black out holding in that cough just to let him keep that peace.
Not that we don't love every minute of his joyous laugh and infectious smile...but when you see him struggling to bring his body to rest you know it's what he needs.
These past few weeks have been hard. As I've mentioned, with any kind of illness, communication is rough. He can't tell me he has a headache and can't go to school. He can't tell me he has a sore throat and doesn't want to eat. I've been trying my best to read all his signs and signals, the little things.
After a few nights of rigorous coughing I knew that he was desperate for sleep - SO WAS MOMMY!
Last night after medicine was given and the routine of "bedtime" was nearing completion he took my hand and sat me on the couch. After the daunting hunt for "the movie" he curled up and laid his head on my stomach... I was contorted in the most uncomfortable, circulation cutting, neck breaking, bladder squishing, leg twisted, position and he laid there...so gently on my stomach...I knew if I even TRIED to move I would break it!
Not him.. but that moment. That settled moment
Then it happened. I felt it! He was out. It was over. I'd have to stay there as long as he slept. Most nights it's only a few hours. Nope. Not this night...TEN HOURS...
Yes. I could have moved him. Yes. I had to pee so badly but risked a bladder infection... AND YES! I held in so many coughs and sneezes there is no count as to how many brain cells I damaged...
But you know.. when our child needs something and we can give it to them- we do. Especially when it comes to health.
I'll tell you something though.
For those 10 hours... I had the most amazing view...
So just for him to rest and be at peace... my baby... I won't breathe.
His Red Skittles
January 29th, 2020
If we go out to eat and I get my cheese fries, don't even let it cross your MIND to touch them, you know what, don't even look at them. Especially the crispy looking fry and slightly burnt cheese...hands off!
I mean, if you're starving and I love you I'll give you a few soggy ones from the bottom but wait your turn!
We all have our "food thing" right!
Rocco is very, um, special when it comes to food. The fact that he eats anything now is such exciting progress. I think him eating a cheese doodle at 3 in the morning is cause for quite the celebration. In all seriousness, he went from weeks of NO FOOD. Yes, NO FOOD. Only sustaining on milk, no supplements. If you know some ASD kids, you can't sneak ANYTHING by them, they are particular and very, VERY smart. I tried changing brands of peanut butter once when he was eating that, and the stare down I got burned holes in my soul! But slowly he began to eat, Doritos, nonetheless, he ate. It's been several months and that was basically his meal. We were able to integrate pizza...crust only. And after he entered Hand Over Hand we slowly watched his curiosity expand his pallet. Mind you before this kid even had teeth he was gumming steak and sucking on bacon!
Anyway, I have to add Rocco's favorite color is red. I think if broccoli were red we'd have a chance! He simply gravitates towards it! Especially cars. Well, he doesn't discriminate, because every bag of skittles, all the reds are missing. We know the culprit and we know he does NOT SHARE. Mixed color goldfish, don't you touch the red. Fruit loops, hands off the red.
So yesterday Rocco came home from school full of his joyous energy and we had some time to cuddle as Lily napped, (I know, I WTF'd too!) so we took advantage.
He got up and brought back a bag of skittles from the candy dish. Yes, we have an accessible candy dish. I shouldn't have to explain but for the "holy-er than though perfect parents", Rocco had a tendency to eat rocks for input so chewing tough or crunchy candy prevents that.
Back to this cuddle and skittles. I opened the bag and poured some in my hand. There goes his grubby little paw... right for the reds. I thought nothing of it, that's just routine.
What happened next blew my mind...and my heart.
His hand came to my face and put that red skittle in my mouth.
I looked at him shocked and did the big exaggerated rubbing-your-tummy, YUM! Wow, thank you for sharing.I chewed it really big and he laughed. It happened again. Then he alternated, him than me, over and over. When they were all done he just sat back like nothing special happened and we finished our cuddle.
He has no idea what he just did.
He gave me his red skittles.
I'll never let him know how much I hate those things, because yesterday, those were the most DELICIOUS bag of skittles I've ever had.
Your Tears Burned My Face
January 18th, 2020
When you aren't feeling well kiddo, well, none of us are. I think that is one of the hardest things about not being able to communicate. Where does it hurt? What is hurting? How bad? What kind of pain? It makes everything, well, amplified. ESPECIALLY not being able to speak.
Last night I laid with Rocco on the couch (it's part of a daunting but sweet, -gritting my teeth through a smile- oh so sweet, routine we do EVERY night), him tucked under my arm and me uncomfortably trying to figure out where to put my head so my neck wouldn't stiffen into a contorted giraffe. He took brief naps, waking up screaming and falling back to sleep. So you know I obviously slept like my husband.
Right.
Seriously, the bags under my eyes could make one strong cup of tea!
That's not the point, this poor kid was so restless and uncomfortable and I had no way to help him. He had, um, bathroom issues (I'm sparing you the details), was coughing up a lung, and a stuffy nose. The one thing, ONE THING that helps him stay somewhat at peace are his movies. He is enthralled by them, gets lost, the way he laughs and dances along, gazing into the screen, he's inside living this cartoonesque life where he's understood, no words are needed.
Come 3am I knew Rocco was up for the long run. He was sniffling, groggy, and had a pout on his face that I can't describe. It's the kind that in movies little kids put on and they can have a puppy, pick a car, and be sent on a dream vacation just for quivering that little lip!
I was rubbing his arm and just repeatedly asking what I could do for him. He took my hand and placed it on the remote...and that my friends... began the daunting task of finding the movie he wanted... that my friends caused the tears he cried that burned my face.
We must have gone through, at LEAST, thirty movies. He knew what he wanted to watch and he tried so desperately to tell me...
The longer we looked the heavier the tears. I knew because he was sick it was ten times worse. He started to bang his head into the couch, face red, smacking himself. I'm doing my best to stay calm and use my gentle voice. "It's ok bud, we'll get this!"... I kept going through the movies, one by one, doing joint compressions in between and rubbing his feet as I sat on the floor... then we finally found it! It only took FOREVER!... He had stains on his face where the tears ran and I watched him wipe them away.
I jumped back on the couch and he pulled my arms into his chest. He grabbed his bottle, took a deep breath, and laid back on my chest.
He couldn't see, but I was crying his tears now. His tears were burning my face. His tears are my tears.
Don't worry bud. We have this.
I think I'll go wake my husband up now...
Click Here to Add a Title
Click this text to start editing. This image and text block is great for descriptions about your business, products, or services. Double-click the image on the right to change it. You can also stack more of these blocks to describe items with imagery.
Click Here to Add a Title
Click this text to start editing. This image and text block is great for descriptions about your business, products, or services. Double-click the image on the right to change it. You can also stack more of these blocks to describe items with imagery.
Vanilla Lip Gloss
January 10th, 2020
The best way to describe Rocco's Autism is much like Alzheimer's (I'm using this word to describe how there are brief moments a memory can return, is how there are moments it's like he's typical). Rocco is often off in his world. I'm sure it's beautiful because he's usually smiling and laughing... Though I do wonder if he's lonely.
Then...there are brief moments...sometimes only lasting minutes... but they are so miraculous. Don't get me wrong. I love this kiddo with or without these moments, but good gracious...the little snippets give me something so beautiful inside I just can't explain. It's like he is here, present, listening and participating in this world with us, and I'm not desperately trying to join his.
The other night he ran to me in the dining room with his arms in the air, made a sound like "up", bouncing up and down. I lifted him quickly (all 55 lbs. of him) and hugged him tightly...and he hugged me back! He pulled away and held my face. He smiled and laughed....kissed me and giggled. I had just put on vanilla lip gloss and he licked his lips! He shook his head in surprise, kissed me again, touched his lips and licked his finger. He held my face and brushed my cheek. Stared into my eyes and just..smiled. I looked at my husband in disbelief! He kissed me again quick and laughed! He was now just playing because he was getting such a reaction. I didn't realize that I was screaming and bouncing him almost through the roof! I had tears streaming down my face out of joy. At this point my arms were numb but I didn't want to let go...I was so afraid.. If i put him down would he come back? Would he run away, out of the room and slowly slip into his happy little world? I risked it, He didn't want to go down... I mustered up a little more strength. He nuzzled his head into my neck and hugged me so tight. I knew...in that moment...he may be in his own little world...but he knows how much I love him...and I know how much he loves me...I put him down and he ran back to the couch.
I will hold on to that moment forever...and I will always wear vanilla lip gloss.