WELCOME to The Full Spectrum Mom 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!
See Past The Smile
(This started as a brief thought, however, I think it's worth the read.)
Invisible, chronic illness and special needs children... My real, daily life.
(Val, when will you shut up about how you feel or having autistic kids? When my kind of illness is seen and our children are medically and educated equally, included, accepted, oh this list doesn't end).
In a matter of hours my body shuts down. It happens within minutes. I try everything to prevent it...I prepare, I put together, I arrange, I do anything in my ability to assure my health will be it's best because I need to succeed. Not just for the Foundation (in this example) but for my children. I want them to know I will never give up on them, on my commitment to the community, on a dream.
But the crash, the crash is head-on.
Only there's no ambulance, no urgent care, no one to come to the rescue.
It's invisible.
It's silent.
It's every... single...day.
To those out there suffering from a chronic illness I see you. Especially if you carry extra weight! This past week I was only hospitalized only once but I'll keep fighting. Honestly, I couldn't do this...life...without my husband. He's been my rock and really my strength with Rocco through so much. I'd say "through my weakness" but I'm learning that this, all I'm fighting, this is my STRENGTH.
In my ability to move forward and fight, even though this is how I have to continue, I GET to continue. So through the pain, nausea, fatigue, meltdowns, diaper changes, aggression, yelling, and that thing called life, I'll go on with the smile on my face. While I refuse to quit, let's hope my body can keep up a little longer. What I will succumb to...I can no longer hold/host long events that require extra strength, I can't attend events that need me to exude energy, especially by evening time, I'm not able to travel far/long periods of time. My whole life has changed and most of my time/energy is given to my children. Once Rocco is in his new home my body may have a bit more, but I would much rather less energy than one less child.
Anyway!
Invisible illness doesn't mean it's any less painful, physically or mentally. It simply means see past the smile, we've learned to hide it better.
Back To School, Back To The Battle
8/14/25
Here it is parents, back to school, again. You have both a sense of dread and relief. A few hours to yourself but what will happen during that time (insert all day long clenched stomach), the build up to those hours, the prep that goes into those hours.
I see you.
I have two autistic children, one profound, and everyday I worry if their IEP is being followed but more importantly, were they treated kindly? Were they loved? Are they safe? Those emotions are valid.
I see you.
We allow our children, many who cannot speak up for themselves, into the hands of strangers and hope they will treat them like we do, help them, give them grace. Teach them to better navigate this world. We pray for patience.
I see you.
So here's to you, caregivers, as your children go back into the unknown. I wish you peace, hope, and a whole lot of luck as we navigate a new year. Wrestling clothes, battling a toothbrush, fighting foods, wipe down baths, and the brush of the hair...
I see you. You're going to do great!
(Don't forget, you get grace too)
Our Eggshells
8/13/25
Walking on eggshells has taken on an entirely new meaning in our home, as we constantly adjust our actions to be mindful of Rocco's, our profoundly autistic son, heightened sensitivities. Each step we take feels like a calculated move in a game where the stakes are high—the stakes being Rocco's comfort and peace of mind, that and avoiding his epic meltdowns. His world is filled with overwhelming stimuli, and the challenge lies in understanding and accommodating his experiences without overwhelming him further.
It’s heart-wrenching to witness his struggle—a silent battle against the noise, lights, and sensations that many of us take for granted. The frustration he faces is palpable, and it's a reminder of the importance of empathy and awareness in our interactions. Desensitization techniques suggested by others may hold potential, but it’s crucial to respect Rocco's current state; the journey toward comfort must be navigated with patience and care, right now isn't the time to place those demands on him.
Even within these confines, small victories shine brightly. Today, car ride was worth celebrating—a testament to Rocco's strength and resilience. It's a delicate balance of presence and reassurance, ensuring he knows he is never alone while respecting his need for space.
Though we may feel like prisoners in our own home at times, we emerge with more compassion and a stronger bond for sure. So far, today, shells avoided!
He's Gone, But He's Still Here
8/12/25
He's gone again. Words are lost and actions have changed. I watch as his once favorite parts of movies come on and not even a glance, once it used to bring him to his feet, bouncing with joy, even giggles. All his requests so clear, "soda" (really watered down lemonade), comes with a grunt and hand off of a cup. Wanting his chips, I now get walked to the pantry and hand thrown at the bag, no more cute voice "chipsa". No one talks about, not just the first "loss" of your child, but with regressive autism, the many times you go through loss. How hard you grieve each time. You look back only weeks and your stomach turns, where did they go? His eyes look empty. I gave up hope a few months ago and I couldn't go on, I needed to hold onto something. I find myself praying so hard, begging for light. I know there's so much in there. I've seen it! I've heard it! Above all, I've felt it.
But right now I'm grieving. I've lost him again. I'll grieve in silence because Lily doesn't deserve a broken mother. She's been through one hell of a summer. During moments I'm not in the midst of a meltdown (rolling with the punches) I'm trying to show her "normalcy" (well, I'm her mom so as normal as it gets! Lol). She's so truly amazing and thriving the best she can and I'm truly proud of her. She is completely aware of the situation and she too wants what's best for Rocco, even if it's not with us. Until things change I'll continue doing what I'm doing. Balancing having one child I continue to lose while hoping the other isn't completely traumatized by all she's seeing. I just hope there's more awareness to regressive profound autism, how a child can go from thriving to surviving, why a parents grief is neverending, losing your child over and over again, the strength we require is unspeakable.
Get A Break
8/11/25
What a whirlwind weekend it was. Between illness, meltdowns, and sleepless nights, I’ve come to a heartbreaking realization: Rocco needs placement sooner rather than later, for his safety and my own health.
After the 21st broken nose, it’s finally clicked... My body can't take this anymore. I struggle with the guilt of feeling selfish, but I have another child who also deserves my best.
The process is underway, and we’re now waiting for his bed in PA. While my heart is breaking, at least my nose won't.
(my eyelashes look like rabid spiders, like I said, it was a rough weekend!)
I'll See Him Dance Again
8/9/25
This message is coming to you in the aftermath of an, almost, 4 hour long meltdown. We still don't know what triggered it but, wow, it was a doozy. There was head banging, scratching, biting, punching, screaming, crying (both Rocco and I), but Mike took the brunt of it. I have to say I'm thankful he was home, but therein lay my fear. I have two and a half weeks of Rocco home, no longer in summer school and minimal hours of in-home behavioral therapy (while minimal it's the max. allotted). I'm terrified. If the triggers were more clear, if I didn't have to worry about protecting Lily, if I were stronger, perhaps I wouldn't be as concerned, but I am. I never want to think I'm afraid of my own child, however, I am but this is in no way his fault. My heart breaks for him knowing he has no control, I can see it in his eyes. He's getting bigger, as are his emotions....and his strength, enter hormones! Watching the constant regression is agonizing. It's days like this that remind me we are making the right decision with an out-of-home placement. Not only for him but for our safety. I'll tell you the truth, it makes it no easier. I will continue to hold onto hope that there is a miracle in our future and the best is yet to come. I know my boy that danced in the wind is still in there, I know I'll see him dance again.
His Voice; With or Without Words
8/5/25
I've been sleeping on the couch for years due to my physical safety. To say that having a special needs child can have an impact on your marriage is an understatement...what about my back! Seriously though, it was a jarring reminder this morning being woken up by a blow to the stomach. Rocco, who has profound autism, had woken up before me and wanted more lemonade, instead of using his vocal sounds or placing the cup in my hand, what he'll usually do, he chose to wake me up the Rocco way. I'm grateful it wasn't my face but WOW was I in pain. I remind myself he's only 9 years old and will continue getting older and stronger, it's frightening. A blow like that a year from now will cause me serious damage. Instead of dwelling on the absence of his speech it drives me to work harder in fighting for more therapies to increase his communication skills (he gets ALMOST NOTHING at school- let's face it, it's bare minimum), but for myself too, to keep looking for the best ways for HIM! Imagine for just one day you were unable to speak, not a word. During that day you get a toothache, how do you tell someone? You're hungry and want a specific food, how do you order? You want to go to the park, how do you ask? The frustration of being trapped must be isolating, frustrating, unbearable... While I do my best I can do better. I know he's going to be living in a home one day but right now he's here with his family and he deserves every opportunity. Plus, I don't know how many more morning punches I can take! So here's to being his voice until he finds his own, no matter what form it may come in
At What Price
8/4/25
It's here. The last few days Lily and I have several hours just us, the girls. Rocco will be out of summer school and back to his couch antics, with therapists of course! Regardless, our time of girly things will come to an end, Rocco does require the majority of my attention. In the little time we have each day we are smushing in some fun activities I know she loves but aren't overwhelming. If we were to go somewhere new a lot of prep work goes into it, Lily has autism and going somewhere new isn't something to be taken lightly. Today we went to Abma's farm. It was familiar and could fit in our time constraint. Rather than keep my phone out to take pictures I captured a few and stayed present, completely mindful. While I'm grateful I did, it brought a lot of pain and regret. Stuff I simply couldn't control. Not the emotion or the thoughts that were haunting me. I watched her feeding the goats with such joy, this kind of natural happiness that you don't see in such simple things. I reflected on the life she has at home and my heart ached. To her this is peace. It's calm. It's a bit of an escape from her chaotic reality. I feel so guilty I can't protect her from that. But I also realize, this is shaping who she will be and so far, she's incredibly compassionate, patient, kind, understanding... But at what price? Missing out on so many childhood memories because we can't travel. Having a brother who's profoundly autistic makes it very difficult. I do the best I can and I hope it's enough. So here's to the girls days... May they be full of laughter, sweets, and lots of lasting memories!
Knock, Knock!
Come On In!
8/2/25
Knock knock, who's here? Come on in! A home that has children on the spectrum, ours has two, one profoundly autistic, you may find a few things that aren't found in typical homes, call it a unique canvas. In our home you will find multiple holes in the walls, head shaped, Rocco height. You'll see doors glued back on hinges and glass removed or replaced. There may be boxes, in excess, of one product because you cannot run out of a favorite food. Not because they just like it and you're just a prepared mom, but because you are avoiding a massive, physical meltdown. Every door has protective locks and alarms. In addition to the locks you may see a full size camera system outside just in case they happen to sneak past you (yes it happens), to know what direction to run in, ESPECIALLY when you live near water. Those are just a few of the things you may see in our home that not everyone has. Oh, there's also "just wearing our diapers" because comfort over clothing, so lots of belly's around here. In our home the biggest rule is no judgement and you come in with love or don't come in, and everyone is welcome.
Welcome to part of our journey...
It's Not Giving Up The Dream...It's Finding A New One
7/29/25
Yesterday, a metaphorical lightbulb flickered to life in my mind. It was a vivid, physical reminder of how my life has transformed into something I never anticipated. I was preparing for an Emergency Service Presentation at the local EMT Station—my passion, my dream. I was mentally equipped. I had envisioned sharing my knowledge, imparting wisdom, and being the vibrant force I once was. Unfortunately, my body had other plans.
Just thirty minutes before I was supposed to step out, I found myself on the floor, engulfed in waves of sickness and crippling pain. The room spun around me as I fought to catch my breath. The effort it took to prepare for what should have been a moment of joy had instead brought me to my knees. It became clear that a dark reality awaited me—a harbinger of bad days ahead.
Today has been challenging, not solely because of physical affliction, but the mental toll has been just as unbearable. I am confronted with the heart-wrenching truth: I must relinquish many of the pursuits I hold dear. An invisible illness can shatter not only the body but also the dreams we cling to. It creates an illusion that even I sometimes buy into, breaking my heart in the process.
As a parent, caring for children—especially with two special needs, one profoundly autistic—can be exhausting. The ordinary demands of parenthood are amplified in my life, draining my energy. It has prompted me to wrestle with the pain of relinquishing certain dreams while coping with the reality of my limitations.
Yet, amidst the challenges, I am slowly realizing that while certain dreams must be set aside, new ones can be born. I still have the privilege of life, and with it, I deserve happiness—even if that happiness unfolds at a slower pace. Accepting that change is necessary and embracing new adjustments can foster a different kind of fulfillment.
As I reflect on this journey, I'm reminded that it’s okay to mourn what has been lost while remaining open to possibilities ahead. With every step back, there remains an invitation to step forward differently—recognizing that our paths may take unforeseen turns, but hope remains steadfast, illuminating the way. Hope is the brightest light I've ever followed.
Your Eyes Story
7/26/25
His eyes look empty, a massive contrast to the brilliance that lies beneath the surface. Each attempt to engage his world often returns met with nothingness. A year ago, he was playful, running through the wind, jumping into the pool, laughter echoing around us (I don't want to paint a perfect picture - those were the rare but wonderful moments, but at least there were moments. It was in those brief miracles you showed me such beauty in this world). Now, he seems to have vanished back into himself once again. Caught back into the cyclical episodes I fear and hate most of all.
Each time I experience a loss I thought I’d already grieved. His rages continue, fierce yet tempered; we've learned to tread lightly, guarding not just his peace but my physical safety. Rocco, I see you and I miss the vibrant spirit that used to shine through those eyes. It’s painful to be reminded of what once was.
Yet I want you to know, regardless of the page we are right now or the time that passes, I am right here. No matter the situation, no matter the page, no matter the stage, my love remains steadfast. You are mine, and that will never change
If A Tree Falls In The Woods
7/25/25
Today was a seemingly ordinary day, I was taking a few precious moments to clear my mind among the flowers and plants that bring me peace. Suddenly, a pang of pain surged through me compelling me to run inside. In those fleeting seconds, I heard a terrifying cracking sound—a massive tree had fallen exactly where I would have been watering my plants. It struck me in that moment how easily things could have gone differently. Would my instincts have kicked in to save me? In such situations, we often don’t know how we will react.
The thought of that tree falling resonated deeply with my everyday struggles and the statement "everything happens for a reason"...I look at my son, Rocco, who is profoundly autistic, and I often ask myself, "What is the reason?" I witness his anguish as he bangs his head and attempts to communicate desperately. Despite my love and support, there are moments when the reason for his suffering eludes me.
Similarly, I see Lily, my daughter, grappling with crippling anxiety. Her challenges manifest in ways that leave her physically ill. Watching her suffer due to her own level of autism raises the same question: "What is the reason?" Every day feels like a struggle against an invisible current, and I often find myself haunted by the search for meaning.
However, today in my garden, the saying "everything happens for a reason" suddenly clicked. The pain that drove me inside was a glimpse of divine intervention; it saved me from harm. In contrast to the daily struggles I bear alongside my children, this incident offered a moment of clarity. Perhaps some moments of pain, confusion, or even suffering have their purposes.
In life’s whirlwind, we sometimes overlook the small, illuminating truths. Today, a tree inspired me, and with it, the light of understanding dawned. While I still grapple with the question of why my children endure their difficulties, that experience reminded me that life has a way of protecting us, even when we can’t see the reasons. Sometimes, that alone is enough to foster a sense of gratitude and hope.
Today, I hold on to that new belief gently yet firmly: everything happens for a reason—sometimes, we have to let the questioning go.
I Had A Vision
7/24/25
Today has been particularly challenging, I'm not feeling well at all. In an effort to take my mind off of the pain, I dedicated some time to work on my vision board. It’s fascinating how envisioning our future can alter our present mindset. My board is more of a dream board, posting hopes that reflect not only where I want to be in a year but also the person I aspire to become.
Each image and word represents an aspiration, a possibility, and a reminder of what brings me joy. While some call it a "vision" board, I find solace in viewing it as a collection of my most cherished hopes. They don't all have to be tangible or urgent. Simply visualizing them provides comfort, especially on days like today when emotions feel heavy.
Staring at my dream board, I realize that sometimes all we need is a gentle nudge of inspiration. It serves as a reminder of potential and the beauty of hope. As I look forward to the future, I embrace the uncertainty while holding on to the dreams I’ve crafted.
In the end, it’s not just about achieving these dreams but celebrating the journey of hope itself. It's amazing what a little reminder can do!
It's My Time
7/22/25
Who really determines how much time we have left? While my doctors can provide insights and statistics, the ultimate power lies within ourselves. Are you ready to embrace this challenge? I know I am.
As I navigate my path, I remain keenly aware of my age, my odds, and the obstacles that lie ahead. But alongside that awareness, I hold a profound understanding of my capabilities. With an incredible team supporting me, I'm ready to face whatever comes.
ROCCOSJOURNEY was born from a deep-seated purpose, and I am committed to fulfilling it. As Ms. Northern NJ International, I proudly represent the values of neurodiversity, inclusion, acceptance, and education. Together, we will amplify our voices, spreading awareness and understanding far and wide.
I eagerly anticipate the upcoming inclusive events, a book launch, and so much more as we continue to advance this mission. Time may be finite, but what truly matters is how we choose to spend it. This is my time.
Until My Last Breath
7/20/25
After a much-needed getaway with my mom and Lily, a day of ABSOLUTELY NOTHING, I found myself in a rare space of stillness—an opportunity for soul-searching and contemplation. It struck me how challenging it has been to put myself first, to prioritize my health amid the chaotic beauty of motherhood, being sick, and running the Foundation.
When my children were born, I instinctively became their protector, their nurturer, which often means my own needs are placed on the back burner. Yet I recognize: for their sake, I must also care for myself. This lesson, while hard-earned, is crucial.
As I navigated through thoughts of continuing ROCCOSJOURNEY, my role as Ms. Northern NJ International, and the upcoming events dedicated to neurodiversity, I realized how intertwined these pursuits are with my identity. It’s not just about the obligations; it's the passion for spreading inclusion and understanding that fuels me. It isn't just my life, it's what gives me life!
While away I tried not to think about my health (the constant pain has become a norm) until it demanded attention, either having a flare up or needing meds, reminding me that self-care isn’t selfish—it’s necessary. Being a mom, a leader, and an advocate isn’t just my role; it’s my essence. It. Is. Me.
So, I will continue on this path—the Foundation, Ms. Northern NJ International, the upcoming events—because to deny this my journey would feel like denying my very breath. I'm very much alive.
Your Child, Your Masterpiece
7/17/25
I felt it, building up inside me, then SNAP!
I did, I snapped and I regretted it instantly. I never, ever, snap at my children. I nipped. As Lily walked away sulking I followed closely behind, calling her name, she made it to the couch and I sat beside her. Especially since she has a hard time processing feelings I felt the need to explain, "Lily, mommy is so sorry. That was not meant at you in any way. I'm overwhelmed, tired, and really not feeling well today. Please, please know I didn't mean to snap at you"! She replied right away, "I know mommy"! I hugged her tight and went back to the work I was doing. I make it my priority to never take any of my frustrations, pain, annoyances out on the children. It has nothing to do with them, they may be the cause of some of it, how many times can you answer to "mommy" in one hour, but by no means should they get any grief, THEY'RE KIDS! So if ever I feel I've been unjust I always apologize. I think it's so important we treat our children, even kids like Rocco who is profoundly autistic, with the utmost respect, just as we would want. It teaches them a lesson in consideration, compassion and they will carry it through their school years, into life. Practice what you preach, even if it means putting your pride aside, your shaping your child's life, make it a masterpiece.
Even If It's Only A Whisper
7/16/25
Life has a way of challenging us beyond measure. In recent times, I've faced profound trials— finding my health is at a standstill, the loss of my beloved dog, the heart-wrenching decision to place my child in a residential facility, the emotional toll of closing a Foundation to which I dedicated my heart and soul, and the everyday weariness that comes with it all. I found myself merely going through the motions, a shell of the vibrant mom, wife, and woman I once was.
Mornings blurred into routines, each act unfolding in slow motion. I was alive but living in survival mode. Yet, in this space, I discovered a flicker of strength—visitors, calls, and messages breathed new life into me. These connections reminded me that while life may not return to what it once was, that’s perfectly okay. Change is not just inevitable; it is essential.
As I navigate this uncharted territory, my purpose remains unwavering: my children. Adjusting to this new reality is complex, but I carry forward with the mission to advocate for autism and neurodiversity inclusion, education, and acceptance. Though the Foundation may close, my voice will not fade. Through my writing as ROCCOSJOURNEY and The Full Spectrum Mom, I will continue to champion those who are often unheard.
My journey may slow at times, but it will never stop. I will seek strength in the wildest places, drawing from the love and support of those who have stood by my side. I will always continue to be a voice for the voiceless, even if somedays it's only a whisper.
I Love You More
7/9/25
“I love you more.” Those simple yet profound words resonate deeply, especially when spoken by those who are usually unable verbalize. This sentiment holds a special place in my heart, having heard it from my son, Rocco. A boy who communicates in his own unique way, Rocco, who is profoundly autistic, whispered those words accompanied by a tender kiss. This moment, though born of echolalia—the repetition of words he hears—was laden with genuine emotion.
In our fast-paced lives, we often overlook these small yet meaningful interactions. Rocco’s small, raspy voice is an irreplaceable reminder of the love we share, and the enormity of feeling encapsulated in a few words. Moments like these are treasures; they are snapshots of connection that remind us to hold onto love dearly.
It's in these fleeting moments that we find the essence of what it means to love and to be loved. Each “I love you more” is a gentle reminder for all of us—that no matter how we express it, love is worth cherishing and sharing. So let us not forget the importance of openness in our relationships. Let’s embrace humility and vulnerability, and never shy away from expressing our affection. After all, love is a language we can all understand, and a gift we can always give.
Let’s celebrate these small moments of love, encouraging everyone around us to say, “I love you more”.
Outcome May Vary
7/7/25
Loneliness can be a profound emotional burden, especially for those of us raising special needs children. When your child has profound autism, the world often feels isolating. This sense of solitude amplifies when you yourself fall sick, battling a chronic illness. It's not just about feeling unwell; it’s the disconnect that deepens with each passing day.
Suddenly, the invitations stop coming. Friends assume your answer will always be no, or perhaps they've just chosen to distance themselves from what they perceive as “negativity.” They don’t even know you were back in the hospital just because you don't post about it; they don’t reach out. The weight of this solitude is crushing, as the reality of your situation doesn’t just consume your life—it becomes your life.
I can name the people who I feel a betrayal by, whose silence and absence cut deeper than any illness. You would think that with the challenges I face at home, they might offer understanding, yet they’ve simply ceased to try. Each loss feels like a cut, each memory bringing back the hope that might have been.
Survival in this new reality feels like a commercial promising hope "outcome may vary"; yet, all that comes is loneliness. However, I know I’m not alone in all of this; many feel the chasm widen as life becomes a series of battles—both external and internal.
Yet amid this, I hold onto those who remain. The handful of friends who still check in, who invite me out, and who genuinely care about my reality. They are the ones who deserve all the love and gratitude I can muster. They even get special gifts in the mail- they know who they are!
To those special few, I see you. Your kindness is a balm in the chaos, and I wish for nothing but miracles in your lives. You are the light in my shadowed world, and for that, I am eternally grateful.
Not Me, Who?
7/5/25
As a parent of profoundly autistic children, one of the most daunting fears I grapple with is a question that looms large in my mind: What happens when I’m no longer here? When I can’t fight for my child, when my voice is gone, who will fill the void? Who will carry out the daily tasks of feeding, bathing, changing, and cleansing? Most importantly, who will love my child as fiercely as I do?
The hard truth stares back at me—no one will love him in the same way. However, buried within this truth lies a spark of hope: someone might. Throughout our time together, my partner and I strive to set our child up for success. We work diligently to provide him with the tools he needs to navigate the world. The task is monumental, but the love driving these efforts is even more profound.
Every day, we face the reality that our greatest fear is ultimately leaving our child behind. To ensure he thrives in a world that may not always be kind can feel like an insurmountable task. Yet, we remain committed to finding a safe place for him to grow old. A sanctuary filled with loving, caring, and most importantly, patient hands.
This truth is heavy, weighing on our hearts every damn day, yet it also fuels a relentless spirit within us. We pour our souls into the hope that our efforts today will lay the groundwork for a brighter tomorrow, allowing our children to lead fulfilling lives.
In these moments of vulnerability, we cling to our love, our perseverance, and the belief that even when we are not there, we are giving them the best foundation possible.
Let Freedom Ring
7/4/25
Today, we will gather as our little family, I even made Rocco's favorite feast of chips and lemonade, surrounded by love and laughter. It’s a day of joy as we celebrate with family, most excitedly, Lily WAS INVITED to a Fourth of July party! It was with extended family, but she was asked to go and there will be another child there she's friends with!
Just as with any holiday, it is bittersweet this year. With yesterday marking our matriarch Grammy's birthday—a day once filled with loud celebrations—the ache of her absence lingers. This day, which used to be bursting with life, feels eerily quiet, blending grief with hope. Especially going from a lifetime of utterly mad celebrations on this day to a drastic difference, the heart can feel an unearthly ache. The ache of loss, grief, want, hope, a mixture. So while it's a day we celebrate freedom, I still feel very trapped. Both physically, in many ways, and mentally.
As I embark on a new medication regiment, I embrace the unknown of what today will bring. Yet, I hold onto the joy of simple moments, cherishing the love in our family.
To all of you who can celebrate with family, soak up the memories—whether it's BBQs, days at the beach, or just sitting poolside. These are the moments that will carry you through the years. Let freedom ring!
Breakin Bacon
6/30/25
Lily is a 8 year old spitfire, diagnosed autistic, ADHD, OCD, and PTSD, sister to Rocco, a 9 year old profoundly autistic brother. Even though he's her brother she takes on A MAJOR responsibility, almost motherly which puts a lot of pressure on her. But it also brings on moments like today. This morning I watched her break up pieces of bacon, picking the crispiest for him. Putting them up to his mouth to eat. He would gently take them, finish eating them up. She'll occasionally bring up times saying she's upset because we can't do things because of Rocco, but when it comes down to the grit, he's got an Angel in Lily. We all do.
She's also seen things no child should ever see. She's witnessed Rocco beat me to a pulp, break my nose, rip my ear lobe off, seen him run through a glass door, etc. She's been through very traumatic events. Including dealing with my illness. While a lot of her life revolves around Rocco she had clearly defined her very unique self! At school she, unfortunately, has brilliantly learned how to mask. Years beyond her age and while does get along well with peers her own age, she wants nothing to do with social activities. She doesn't like when kids don't follow rules or basic instructions, but enjoys babies and smaller children, she loves being a teacher figure. She strives for perfection and will become very flustered, even to tears, when she doesn't understand something. When it comes down to it, Lily is like a living pixie! She is the light in the room and will always look on the positive side! She will make you feel like you are a star, the greatest person on earth. She has a gift and shares it with every person she meets.
Support Not Advice
6/29/25
The results I received from my recent medical evaluations were not promising. What they confirmed, however, is that I continue to grapple with superior mesenteric artery syndrome (SMAS), a rare, life-threatening condition that the majority of doctors and surgeons find daunting and have little experience with. The surgery I underwent offered no relief, and currently, my best chance at improving my situation hinges on gaining approximately 30 to 40 pounds. This task, however, proves to be increasingly complex, as my condition does not allow me to consume solid foods.
In discussions with friends and family, the suggestions of using a feeding tube often arise. While on the surface, it may seem like a straightforward solution, the reality of my living situation complicates matters significantly. My son Rocco, who is profoundly autistic, is a priority in my life. We have established routines that help him navigate the world, and introducing something as impactful as a feeding tube could disrupt everything. Rocco’s responses to change can be unpredictable; even minor adjustments have caused him distress in the past – I found myself ripping off a nose cast at his behest.
For those without experience in our circumstances, it may seem simple to suggest hiding a feeding tube from him. However, the reality is that feeding can last up to 15 hours, meaning at some point, Rocco would inevitably be exposed to this new reality. Our initial plan to relocate to my parents' home, where I could focus on gaining weight, fell through due to the lack of support in caring for my children, especially in the mornings when Rocco needs to get off to school. Thus, while a feeding tube might present a solution in theory, in practice, it becomes unfeasible given our current living conditions.
My close friends and family are aware of my struggles, and we often talk deeply about our journey. It’s important to understand that when we share our stories, we're not seeking suggestions—we're looking for support, prayers, hope, and understanding. Even a simple hug can mean the world to me, and yes, bedazzled hugs are welcome too!
I wanted to clarify why a feeding tube is not an option for me at this time, as it is essential to convey the complexities of my situation. Still, there is a glimmer of hope on the horizon. I have scheduled an appointment with a new surgeon who has considerable experience with SMAS, reigniting my hope for clarity and, ultimately, weight gain. As I move forward, I call upon the universe for ice cream—my lifeline during these trying times! Your prayers and support have been instrumental, and I believe they are making a difference.
That and the ice cream❤️
The Whirlwind
6/27/25
A whirlwind. That’s the best way to describe my mind on a daily basis. As a mother of two beautiful children with special needs—one with profound autism—our home is an endless storm of energy, emotion, and chaos. We are a house that never sleeps, constantly caught in the grip of fight or flight, surrounded by mountains of paperwork, a flurry of emails, and a relentless schedule of doctor appointments, therapy sessions, and filling out bills... that’s just the world of autism; it hardly scratches the surface of life itself.
Every morning, I wake up greeted by a to-do list that feels more like a burden than a guide. It’s a multi-layered list encompassing everything from the needs of my children to the household chores to the fleeting moments I need for myself. The task of multitasking has become an art form, as Rocco requires 24/7 care. Between diaper changes, ensuring he has his favorite chips, keeping the iPad charged, and pouring him a cold juice, my day is a dance of demands.
In the midst of this whirlwind, I strive to engage with Rocco—playing, teaching, and nurturing him—but I am pulled in different directions, answering emails and spending precious time with my daughter, Lily. It often feels like I am tethered to multiple people at once, making calls, checking in on Rocco—who is always in my line of sight—while also making sure Lily is fed and entertained. I sometimes have to schedule a bathroom break between a flurry of obligations!
Beyond the needs of the kids, I juggle the responsibilities of maintaining a home. Dinner doesn’t cook itself, plants need watering, and laundry awaits my attention. All of this unfolds while keeping a watchful eye on Rocco. My whirlwind often feels like a hurricane; the chaos is constant, all of this as my body is slowly giving up on me. Last year I was diagnosed with a disease that weakens your body and mine is certainly challenging me.
Each day presents a new storm, my to-do list transforming into a wishlist as I accept the daily challenges. Yet, despite the chaos, there is a sense of purpose that drives me—an unwavering commitment to my children and the joy they bring, even amid the whirlwind.
To all the moms out there navigating their own storms—juggling, caring, and striving—I see you. I see your whirlwind.
Sit In Silence Loudly In Love
6/26/25
Rocco, as I sit beside you—lost in your world of iPads or gazing off to the horizon—I can’t help but feel a sense of sorrow. You see, both my children have autism, my son profound. I witness your attempts to understand the world as you work tirelessly with your therapists. You’re learning so much: body parts, self-care, and the beauty surrounding you. Yet, to me, you appear lonely, distant, as though your spirit is wandering somewhere far beyond reach.
It breaks my heart to think of the moments you returned home from Kennedy Krieger, your body here but something precious missing. I’m haunted by memories of your laughter, your curiosity, and your once-vibrant presence. It feels as though I have lost you all over again, forced to relive that heartbreaking silence of your absence.
Each day, I strive to engage with you, harnessing the tickle monster, singing our favorite songs, giving your "love you" kisses, and practicing signed words. I willingly sacrifice my comfort, ripping off my nose cast just to soothe you. I find solace in providing you the love that speaks without words and a companionship that respects your silence.
Yet, amidst this struggle, there is one realization that pierces deeper than any other—your once-infinite love for water. Those joyful hours spent jumping and splashing radiate pure life! But this year, for the first time, you have completely avoided the pool yard. The one place that filled your spirit with joy is now a distant memory.
I used to dream of warm days when you would dive back into the cool embrace of the water, tilting your head towards the sun, allowing the echoes to wrap around you. But now, I am left with the hollow ache of loss. The pieces of you that once brought me happiness seem to have drifted away.
Where is the life you once embraced? Now you are back to eating a single food, linger on the couch, and retreat from the joys of playgrounds and breezy car rides. The echoes of your laughter are silent now, replaced with longing. I miss you, Rocco. The son I knew—full of life, wonder, and joy—seems to have vanished.
But let me tell you this: My heart will continue to fight for you. Our journey may have become filled with more challenges, but I will always strive to reach you, to encourage glimpses of that vibrant spirit. You are not just a chapter in my story; you are the heartbeat of every day, and I will keep searching for ways to connect with you—because love knows no bounds, and hope remains alive in every moment shared.
I love you no matter what stage we are at, so today again, I'll sit beside you, in silence, loudly full of love.
A Picture Is Worth The Words
6/24/25
In the midst of life’s relentless pace, I’ve found myself unable to snap as many pictures as is like as I focus on the heart of our family’s journey. Our son, Rocco, who lives with profound autism, has been experiencing more meltdowns, agitation, and unease. Each day brings challenges that require our unwavering attention and care, as we navigate the complexities of his diagnosis and seek to understand his emotional language.
What is Rocco trying to communicate? A myriad of questions fills my mind—Is something bothering him? Does he feel pain, or is his mind racing with thoughts he can’t verbalize? Has hunger crept in unnoticed? Each possible answer weighs heavily on my heart as I strive to quell his discomfort. My search for solutions to provide the calming and soothing environment he needs often collides with my desire to be present for my daughter, Lily, who is also on the spectrum. Juggling these needs can be overwhelming, as the days seem to grow more challenging with each passing moment. (More often than not I'm struggling myself with my own physical disorder)
Rocco's behaviors have intensified, particularly towards me, leaving me with physical reminders of our struggles—like the recent break of my nose (time number 20), a testament to his unawareness of his own strength. As a parent, I’m filled with fear—fear for my safety, fear for Lily’s well-being. Yet, despite these fears, Rocco has never once touched her in aggression, a blessing I hold close.
In the face of these trials, I refuse to back down. Rocco is my miracle child, and there’s nothing I wouldn’t do to support him, however difficult the journey may become. I embrace my role with steadfast determination, solving the equations of his needs, dodging the punches as they come, and fiercely advocating for his well-being. Until the day comes when I can no longer do so, he will continue to thrive under our roof.
While the pictures may have diminished, our time together as a family is what truly takes precedence. These moments, no matter how difficult, are filled with love, connection, and growth. We are undeniably blessed to have one another, forming a solid unit that, despite its imperfections, stands strong and resilient. Life may not always be easy, but it is always worth every effort we put in.
It’s true in our case that a picture may be worth a thousand words, but the experiences we share—filled with joy, struggle, and unconditional love—speak volumes that words alone could never capture. Together, we embrace the challenges, cherish each other, and strive to make the most of every moment, knowing that the path we walk is uniquely ours.
What's In A Mask?
6/23/25
In our society, we often applaud children for their achievements and outward behaviors, overlooking the hidden battles they face. Like Lily, her cheerful demeanor and engaging personality mask a profound internal struggle with anxiety, autism, PTSD, and OCD. While she appears to thrive in social situations, the reality is that beneath her radiant smile, she endures immense pressure to perform.
At school, Lily would be considered social. She laughs, plays, and interacts with her peers, seemingly embodying the essence of a happy child. However, this outward performance comes at a high cost. Much like a duck gliding effortlessly across a pond, the calm surface belies the frantic paddling underneath. In her daily life, Lily works tirelessly to maintain the illusion of composure, all the while battling fears and insecurities that can be overwhelming.
The pressure to perform weighs heavily on her as she navigates each school day. When she sits in class, her body may appear focused, yet her mind is often racing with worries. Will she understand the lesson? What if there’s a test, and she doesn’t do well? The fear of disappointing her teacher or us is constant, often causing her to panic. The moments of joy she shares with friends contrast sharply with the anxiety that grips her when she returns home. It is here, amidst the warmth and love of her family, that the masks begin to fall away, exposing the truth of her experiences.
Despite the supportive environment that we provide, the expectations she places on herself can be crushing. We encourage her to do her best, reminding her that trying is what truly matters. Yet, for Lily, achieving perfection feels like the only option. Every mistake becomes a monumental event—one that she wrestles with long after the homework is completed. This relentless pursuit of flawlessness is not a reflection of our ambitions but stems from her own intrinsic worries and fears.
Understanding the complexities of masking, particularly in a child like Lily, can be challenging for those who view her only in her moments of joy. Misconceptions may arise, leading some to believe that she is simply a happy child who has everything figured out. However, the reality reveals a different narrative. For Lily, daily life is a constant struggle against severe anxiety, navigating the challenges presented by autism, managing the effects of PTSD, and battling OCD. The cacophony of emotions can intensify, especially on days when her brother, Rocco, who has profound autism, faces difficulties that trigger her own anxieties.
Despite these challenges, our home remains a sanctuary—a warm and loving space where we strives to foster acceptance and understanding. It is within this environment that she feels safe enough to express her true feelings and experiences. And while it may not always be a quiet place, the love that permeates it serves as a balm for her spirit.
Lily serves as a reminder of the unseen struggles children face behind their outward appearances. As a society, we must cultivate empathy and understanding, recognizing that every child has unique battles. By embracing authenticity over perfection, we can create a world where children feel supported in their journey. Together, let us shed light on these invisible challenges and foster a culture of kindness and acceptance, ensuring that every child can thrive without the burden of masks.
You'll Resent the Resentment
6/21/25
You have to be able to let go of all the resentment that's built up in order to move forward. That's in any relationship, be it friend, family, or romantic. Not only to create a healthier bond together or apart
but for your health. Holding onto things that no longer matter or remain unable to change will build up, like sewage, waste, and eat away at your gut, your immune system, your mental health. You can only control yourself, take pride in how you handle things in your control. How others respond is a reflection of their character. Only you know the shoes you walk in everyday, the shoes I walk in, not a pair to take lightly, certainly not bunny slippers. With two special needs children, one profoundly autistic, and myself, diagnosed and suffering with a chronic, life threatening illness, there are a lot of blisters from this pair, yet they are full of pride! I love my core. We are strong. We know how important the little things are that we don't let things come between us and holding no resentment allows us to grow closer everyday.
Ultimately, our home is a sanctuary free from the shadows of resentment. By choosing to release these heavy burdens, we open ourselves up to healthier bonds and a more fulfilled existence. We already have enough on our plate! Let us strive to build connections based on love, compassion, and understanding, allowing ourselves and those around us to thrive.
Broken Hearted Nose
6/18/25
When a broken heart hurts worse than a broken nose. In the heat of Rocco's, my son who has profound autism, meltdown all I feel is sadness and empathy, heartbreak and compassion. I see my son, a desperate soul trying to communicate something, a feeling, an emotion, a pain...and he can't. How can I be angry? It's desperation. The way he looks so deeply into my eyes I can see he's begging my soul to try and understand. It's painful, not just physically but the emotional side, it takes a toll on it all. Especially as I'm suffering from a disease that has already left me so frail and weak. How long can I continue this? All the while I'm protecting Lily, my daughter who also has autism, also. Rocco is getting older, bigger, the meltdowns longer and more violent. It's so painful to have to think about him having to live in a placement but it's not only for our safety but his. As I'm sitting here, one day after surgery, I think about this being my SIXTEENTH reconstructive nose surgery and wonder how much more I can handle. I know it's not intentional but it doesn't mean it doesn't hurt. What truly hurts is he is so smart and has the ability to communicate if he had the right program, but his school continues to fail us. Profound autism is avoided, put in a corner, and then sent home. They avoid behaviors so my child will never grow to his full potential. I'm not looking for feedback or recommendations, I'm simply sharing our journey.
In navigating the emotional landscape of parenting a child with profound autism, I have encountered the beauty and the ugliness of this journey. While love radiates brightly amid the darkest moments, the challenges can feel insurmountable. I would endure a thousand broken noses to shield my son from the suffering he experiences. It’s a continuous fight for understanding, compassion, and ultimately, a better future for all children like Rocco—a future where their voices can finally be heard.
What Happens When It's Not Just My Nose
6/15/25
In the journey of parenthood, particularly as a mother to my son Rocco who has profound autism, I have faced a complex tapestry woven with love, frustration, and unrelenting empathy. After my body became depleted, I often found myself defenseless against Rocco’s rages, and the terror that accompanies these episodes is not a feeling one can easily describe. It is not Rocco’s fault when a meltdown hits; his ability to communicate what’s happening slips away in those moments. Did something change that he couldn’t control? Was he feeling pain? Was something bothering him? The uncertainties are many, and for that reason alone, I harbor no ill will or anger towards him—only heartache and deep sympathy.
Yet, when his rage is directed at me, the reality becomes brutal. As his mother, I instinctively protect him, but my priority is always ensuring that Lily, my daughter who is also autistic, stays safe. A fact that gives me solace is that Rocco has never hurt her, even in the throes of blind rage. But I often find myself bearing the brunt of his frustration. Just yesterday, I found myself facing yet another brutal incident—meeting broken nose number 20. Tomorrow, we will discover if reconstructive surgery number 16 will be necessary. This relentless cycle began back in 2019, and while few of these injuries were purposeful, this last one certainly was.
Hours later, Rocco gazed into my eyes, gently stroking my face as if to apologize, conveying his sorrow for his behaviors. In that moment, I did not need words; I knew how deeply Rocco regretted what had happened. I understood that he couldn’t control it. Yet, my body is weary from the toll it takes. I feel like a rag doll, worn and fragile. Years ago, I could withstand the physicality of parenting him, but now, I outweigh him by less than 20 pounds, and when it comes to strength, I often feel powerless.
Every day, I wake up faced with uncertainty, and while that can be scary, I strive to replace any sense of anger with sadness—with compassion. Rocco tries so hard to help us understand his world, to bridge the chasm his autism creates. I’m often reminded of the times when words flowed easily for him, when sitting at the dinner table was a joyful affair. Those memories are treasures, yet they are infused with longing as I wonder why things have changed.
But here I am now, exhausted yet resolute. My face may bear the marks of this journey, but I know it is not my Rocco acting with intention. It is my precious boy, lost for words, fighting battles that I can only begin to comprehend. And for that, I will always have the deepest empathy and compassion, no matter how challenging the day may be.
Morning: Fight or Flight
6/10/25
Every morning, as the alarm blares, I find myself caught in a whirlwind of anxiety and determination. If it’s not the sudden beeping that jolts me awake, it’s the soft insistence of tiny fingers slipping an empty chip bag into my hand, demanding attention. In that instant, my mind races as I prepare for the day ahead, focused on getting Rocco, who's profoundly autistic, and Lily, who's autistic as well, ready for school.
The struggle begins the moment I take stock of my own condition: a quick body check I do each morning, praying for a good day. If I’m lucky, I manage to rise on the first try, but the battle has been relentless lately. My mornings are often filled with the basic tasks—changing Rocco’s diaper, brushing his hair and teeth, and helping him into his shoes, but that is all that is easy...
When I make even a slight attempt to change his clothing, a wave of distress washes over him. The meltdown that follows—a collision of emotions, kicking my knees, and dropping to the ground—leaves me feeling helpless.
It’s heartbreaking to witness, especially for Lily, his sister. She watches, her heart heavy, wishing she could be anywhere but here as Rocco’s cries fill the space. She has told me how his struggles affect her, how the sound of his distress pierces her heart. Even though it pains her to see him like this, her love shines through; she steps in with quiet strength, helping guide him out the door and to the bus, carrying the weight of his belongings...and so much more.
These mornings remind me that while I may wake with anxiety and anticipation, I am not alone. The love between these siblings is immense, and the support that Lily offers, despite her own feelings, is a testament to their bond.
We are, collectively, navigating uncharted waters—each day a new challenge and a new opportunity to learn from one another. As I embrace the chaos surrounding us, I hold on to the hope that we are building resilience together, Lily and I, learning to hold space for one another in the most profound ways.
But everyday I still need my body to recover, even after the smallest battle, effort put out, and everyday I'll do it over again.
Me and my little teammates, anxiety and all.
Rocco Is Just Their Paycheck
6/10/25
No one is obligated to take care of children— not even their parents. I do because my love for my children outstrips any love I have for myself. My children, Lily, autistic, and Rocco, profoundly autistic, occupy a unique space in my heart. We open our family to love and support, encouraging friends to join us on this journey. However, there exists a group of individuals we depend on: the therapists who provide essential care and guidance.
For seven years, these therapists have not just been helpers; they became part of our family. They celebrated holidays, birthdays, and even visited me in the hospital. Yet, this past week exposed a painful truth.
An administrative error resulted in several days without crucial therapy for Rocco. The absence of routine deeply unsettled him; you could see confusion the way he peered at the front door.
But the mounting frustration soon overwhelmed me. I started patient, I understand protocol and rules. Yet, when messages went unanswered after the “release to return” notification was sent, I felt utterly disregarded. The therapists who had once communicated with me suddenly vanished, preoccupied with their own plans, ignoring messages. It took intervention from their supervisor to address the situation, reminding me that, as a mom, my voice was insignificant. I was merely Rocco’s mother, I held no weight.
In that moment, it became painfully clear: Rocco was not viewed as an individual deserving of compassion, but a source of income. Their focus shifted, I realized that for some, he was just another number.
In the world of profound autism, love consistently battles against a faceless bureaucracy that often overlooks the human connections that matter most. My love for Rocco will always be unwavering—yet that love deserves a system that recognizes his humanity, not just his need for dependency.
A Rare Disease vs. Me
6/7/25
For over two years, I have navigated the treacherous waters of a dangerous chronic illness, a journey marked by pain, resilience, and profound self-discovery. It began slowly, almost imperceptibly, as my body waged war against itself, culminating in a diagnosis of superior mesenteric artery syndrome (SMAS) — a rare and incurable condition that has become my shadow.
The battles I have fought, including multiple surgeries, feeding tubes, colostomy bags, and lengthy hospital stays, have left an indelible mark on my spirit (and my stomach!). Just five months ago, I underwent a dangerous surgery—a ray of hope that swiftly turned into another disappointment, my surgery was not successful. I have a new series of tests scheduled in two weeks. The ghost of the vibrant woman I used to be—an energetic mother, a passionate advocate for my beliefs—now feels like a distant memory. Simple tasks, such as taking a shower, can leave me bedridden for hours, and the dreams I once held so tightly have begun to unravel.
As I watch my children, Rocco and Lily, navigate their lives, I often find myself on the floor, gripped by exhaustion and pain, grappling with the stark reality of my limitations. My heart aches as I come to terms with my identity shift, acknowledging that the determined figure who walked stages for her beliefs has surrendered, albeit reluctantly, to a new version of herself who can hardly walk her children to the front door of their school.
Yet, amidst the heartache, I find solace in the love of my family. They are my anchor; their unwavering support fuels my determination to push forward. Though the old me may have faded, I am trying to embrace this new self. With every test, every fluctuation in pain, I discover resilience and strength that I never knew resided within me.
What was once unreasonable hope is now a different kind of dream—one rooted in survival, in cherishing everyday moments, and in redefining what it means to be me. While I grieve for aspirations that may no longer be attainable, dreams I have to let go of, I also celebrate the potential of this new journey.
I refuse to let my diagnosis dictate the entirety of my existence. Though my body may have given up, my spirit remains unyielding. I may be navigating the world differently, but I am still here; I am still a mother, a dreamer, and a fighter.
In this new chapter, I embrace the lessons of resilience that chronic illness has taught me: the value of patience, the importance of support, and the strength of hope. As I redefine my goals and aspirations, I do so with the understanding that every day is an opportunity to grow, adapt, and thrive.
This new me may be the me I was meant to be all along.
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...
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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.