“Anybody have a really good babysitter you can recommend? Available at the last minute?” This group text popped up on a Friday afternoon and was quickly drowned in a sea of “nopes!” and “good lucks!” and teary emojis from unrecognized numbers. No one lets go of that number lightly. None of these people, other than the sender, were in my contacts. None of these people, including the sender, will get a response from me.

I could say it’s because this person wasn’t a close friend or that I didn’t have the time while hauling my kids around in the sub-freezing darkness that January evening. But the truth is, I just cannot give it up. Because I only have one number.

Other than family, I have one number, one person, I can call to babysit my children. I’m not being picky; I am being deadly serious. I have a five-year-old with cerebral palsy whose 40 pounds might as well be 100 when you’re carrying him up the stairs or lifting him out of the van and into his wheelchair or changing a diaper on the floor. He also has limited speech, so you must be part psychic, part lip reader, to intuit his needs. His babysitter is an employee at his preschool and has known him since he was two. I can’t afford to give away the one person I trust.

Related: 11 Incredible Books That Feature Kids with Disabilities

I know it’s tough to find someone older than 14 and responsible and available and consistent and friendly and cheap-ish to watch your kids. But for us, it is so much more than that. It takes a background in working with children with disabilities, a secret handshake, a personality test, and some serious magic for me to feel comfortable leaving my children in the hands of someone I’m unrelated to.

That number on my phone with “babysitter” in parentheses is sacrosanct. The days of protecting it began in infancy. When we first brought our son home from the hospital, he came with a tracheotomy, suction machine, oxygen monitor, and g-tube. I barely left the room, much less the house. Date nights were not a priority.

And just before I went back to work, we said goodbye to the daycare we had lined up a year in advance. How could we ask them to hook him up to a feeding pump or suction out the snotty gunk from his trach hole? Not to mention pitting him against the invariable sicknesses that pass from kid to kid. A registered nurse or my mother watched him instead.

Thankfully, the trach and the g-tube and all the most precarious of his medical issues faded away with age. We no longer need a nurse. But we do need someone physically strong enough and trained enough to meet his needs.

Related: 5 Things Every Special Needs Parent Should Hear

And did I mention I also have twins? They are insane, in all the natural ways threenagers are, and require just as much eyes-on time—if not so much hands-on time—as their older brother. They will empty the entire roll of toilet paper into the toilet and lock themselves in the bathroom in under 30 seconds. Date nights are happening again, but they are still rare enough to make me feel giddy just backing out of the driveway.

This is why I let the text go unanswered. This is why I let someone else fill in that blank. Our family situation calls for a very particular set of skills. We need the Navy SEALs version of babysitters. And I don’t know another mother with a child with special needs who doesn’t feel the same. We already get less free time, much less time away without worry over our children’s safety. We can’t afford to hand out freebies.

It’s nothing personal. It’s business, the business of running our family. We need the people we trust. And so we keep them close.

This post was originally published in January 2018.

Jamie Sumner is the author of the book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood. She is a writer for The Washington PostParenting Special Needs Magazine and Scary Mommy, and an editor for Literary Mama. She is mother to twins and a son with cerebral palsy. 

Once upon a time, I lived in la-la land. I had magical dreams of a unicorn baby. A baby that slept through the night and never cried. A toddler that was a well-behaved angel. I dreamt of how easy it would be for a baby to nestle into my existing life as a career-driven woman. My dreams were just that, dreams.

The fairytale life I had envisioned quickly turned into a nightmare. My baby had colic, so not only did he not sleep through the night for months, but he cried all day and night, for months. I felt so alone. I felt betrayed by all my mom friends. No one told me how hard motherhood would be. Everyone let me believe that every moment was filled with glitter and rainbows.

My days were filled with darkness. There was no glitter. Unless you count my glistening tears. Every day, I counted down the hours until my husband came home from work. My favorite noise was hearing his key in the door. As much as I couldn’t wait for him to get home every day, I also resented him. I resented the fact that he got to go to work every days. For nine hours a day, he got to escape a crying, screaming, pooping baby. He got to be around adults and have more meaningful conversations than I was having. Although I don’t think goo goo ga ga qualifies as meaningful or a conversation.

I missed working my regular 7-8 hour days. I missed being creative. I missed setting and achieving big, audacious goals. I tried to work whenever the baby was sleeping (which was hardly ever). But I just couldn’t focus. My art wasn’t flowing. I was exhausted, had mommy brain and was always watching the clock. Counting down the minutes until the baby woke up from his nap.

And then, the villain of my fairytale appeared out of the shadows. Guilt. Relentless Guilt with his sharp claws digging into my heart. Guilt made me feel like a bad mother and wife. Guilt made me feel disgusting for wanting to spend more time working than with my baby. Guilt made me feel shameful for not loving and enjoying every moment I had with my newborn. Guilt made me feel like a horrible human being.

I started to spiral. Looking back now, I know I had a postpartum. But I didn’t realize it then. I just thought this is what motherhood is. None of the moms I knew talked about this stuff. And I felt ashamed that I was having these feelings. I put on a make-believe bright and happy face for the world. I was only posting the picture-perfect moments on social media. I was telling people that being a mom was so fun and fulfilling. But behind all the make-believe, I was having mental breakdowns and dreaming of running away.

I loved my baby, but I didn’t feel like myself. I missed my old life. I have always been a high achiever, setting out to be the best in everything I do. My career and art were such a huge part of who I was. I felt like I was losing all the parts of myself that I admired and loved. I didn’t feel like I was the best mom, wife or artist. I felt like an absolute failure.

Being a children’s book author and illustrator, I set out to inspire children and children inspire me. But motherhood left me uninspired. It was only when I confronted my guilt, that the darkness started to lift. I realized that in order for me to be a good mom and be the person I was meant to be, I had to work. My job sparked a twinkle in my eyes and lit purpose in my heart. It wasn’t motherhood that made me feel uninspired. It was too much guilt and too little of what sparked a light in me.

Just because I was now a mom, didn’t mean I was any less of an artist, a goal-oriented high achiever, a complete fantasy nerd, a big goofball and most importantly, my own person. All those things helped me be a better mom and being a mom helped me be a better person.

RELATED: The Real Reason Motherhood Is So Hard

Holly Hatam is the illustrator of the #1 New York Times bestselling Dear Girl and Dear Boy, as well as Unicorns Are RealMade by Maxine, and Jack (Not Jackie). She loves hugging trees, drinking tea, sniffing books, music, animations and most importantly, unicorns. She invites you to be transported into her magical world by visiting hollyhatam.com.  

Having built a toy company over three decades with my best friend and husband, Doug, and experiencing the joy of unleashing the imaginations of children through open-ended play, most would think that my life was all fun and games. After all, we had achieved the very definition of “The American Dream” with every shiny bauble to show for it. And along the way, Doug and I also created six beautiful children who were the very essence of the boisterous family I had always imagined. I had absolutely no reason to be unhappy, I truly had it all.

But the truth was, that for as long as I could remember, I suffered a crisis of meaning that I learned to hide from the world. This sense of futility was so overwhelming, that the only way I could survive was by disassociating from all feelings and denying who I was. And since I would never fit in as myself, I turned to validation through achieving academic perfection to attain the acceptance I so deeply craved. I became who I thought the world wanted me to be to the point where I didn’t even know who I truly was.

As I reached middle age, I finally learned that my lifelong anguish had a name: existential depression. And furthermore, those experiencing existential depression were often highly creative and had intense levels of reactivity in their central nervous systems called over-excitabilities. And this realization was life-changing, because for the first time in my life, I saw I wasn’t alone and there were actually others just like me. I knew that the only way I would access peace was to stop racing outside myself for answers and embark on a journey inward to self-acceptance. That journey was so profound and revelatory, that I knew my purpose was to help others find their pathways out of despair in transforming darkness into light. Here are some of the steps that brought me to writing my memoir LifeLines: An Inspirational Journey from Profound Darkness to Radiant Light, and creating our LifeLines ecosystem to offer community and impactful content to others!

1. Embrace Yourself in Totality
Society tells us to dry our tears and “be strong.” But when we do, we are denying who we are and what we feel. And that prevents us from living authentically.  Once we come to see that this facade we adopt ultimately leaves us bereft and bitter, we begin to shed that pretension and access the space necessary to truly grow.

2. Accept That We All Need Lifelines
Once I completed my journey and accepted myself in totality, I realized that every day wouldn’t be an easy ride. In fact, many days would be on the dark side of the emotional spectrum! I, therefore, needed a practice to keep me “safe and sane” when I began to plunge below the line of equanimity.

3. Lifelines Are Essential in Three Different Areas
My personal practice of engaging LifeLines involved three distinct areas: self-care, tools, and passions/play. Self-care LifeLines involve the deliberate intention to take care of our minds and bodies. These may seem obvious to many, but for me required making a choice every single day to stay strong. They include eating nourishing food, sleeping 7 hours a night, and exercising in nature. Tools for me include reciting mantras, going to therapy, being mindful in everything I do, and offering myself compassion when my head starts to berate me. The activities and hobbies that bring us joy are the essence of life and move us squarely into our hearts. For me they include writing verses, crafting, photographing nature, listening to music, and drinking tea.

4. Engage in a Deliberate Practice 
Just like a diabetic takes insulin to remain healthy, I must also commit to engaging my LifeLines each and every day to remain steadfast. And that means EVERY SINGLE DAY. If we don’t have our practice fully honed during our more contented times, then it won’t be routine when the journey becomes arduous. A practice MUST be practiced no matter the weather, your mood or your circumstances.

5. Find a Community That Supports You
We created LifeLines.com to build a community showing others that “they are not alone.” When we construct a supportive structure around us, we are better able to shine our light and live authentically. We learn from others’ experiences, embrace our uniqueness, and develop the tenacity to keep forging ahead when life throws us curveballs. The community we have forged has already become a lifeline to so many, including me. I am so grateful to have discovered no higher purpose than supporting others to channel their darkness into light and find meaning. And the more our community can help others heal themselves and share their truth, then the more they will do the same for others and make this world a more loving place.

 

Melissa Bernstein, Co-Founder of Melissa & Doug Toys and mother of six, shared her lifelong battle with existential depression and anxiety in her memoir, LifeLines. She and her husband Doug have developed LifeLines.com, a digital ecosystem to support others on their own inward journeys. Melissa lives in Connecticut with Doug and their children. 

Immersive Van Gogh, a unique art exhibit that just opened in San Francisco on March 18, is a fanciful and remarkable escape from our world into a land of sunlit countrysides, endless flowers and star-filled nights. The distinctive, often dreamlike paintings of the famous Dutch painter are turned into huge, moving animations for this exhibition, which combine digital projections and music to create a truly immersive experience. It’s an eye-opening introduction into the growing field of immersive art, and is a fun new way for all ages to appreciate Van Gogh’s paintings. Here’s the scoop on what you’ll see when you check out this exhibit.

Immersive Van Gogh SF

Massimiliano Siccardi, the creative director of this exhibit, was inspired by Van Gogh’s quote, “I dream my painting and I paint my dream”, and the approximately 40-minute exhibition feels remarkably like stepping into a dream. In the darkness, images taken from Van Gogh’s paintings appear on the walls and floor of the empty space: pastoral landscapes, sunflowers and irises, streets filled with people, and the famous starry night.

Immersive Van Gogh SF

The images continually move and morph, so you can see brushstrokes forming an image, the sun moving across a yellow sky, and flowers blooming. One of the most effective sections of the piece makes viewers feel like they are slowly descending down from the night sky past tall towers, onto a busy street lined with cafes lit by candles. At that moment you feel truly immersed in Van Gogh’s vision. The accompanying original score by Luca Longobardi also creates a contemplative, dreamy mood as the exhibition progresses through Van Gogh’s various pieces, roughly tracing his life.

Immersive Van Gogh SF

The exhibition takes place in a single large gallery space at SVN West. Once you step inside, you see ceiling projectors projecting images on all four walls, and hear music filling the space—you’re instantly immersed in sights and sounds. Visitors are spaced out in social distancing circles on the floor, and there is an elevated viewing platform in the center. Definitely move around the entire space to experience the exhibit from all angles. Admissions are limited to comply with city capacity guidelines, and temperature checks are required upon arrival. All guests must wear a face covering at all times during their visit.

Immersive Van Gogh SF

Ticket prices start at $39.99 ($24.99 for children 16 or younger), with VIP, timed, and flexible ticket options available. The exhibition runs through Monday, September 6, 2021, and tickets are already selling out for the month of March. For kids, this exhibition can provide a new way to view art and understand the creative process.

Immersive Van Gogh SF

Very small children may be overwhelmed by the moments of darkness in the exhibition or the loudness of the music, but you can step outside to the adjoining gallery space for a break if needed. More often, older children seem entranced by the images slowly moving across the walls. Afterwards, when you get home you can look up some of Van Gogh’s paintings that were used for this exhibition. They might inspire your kids to create their own artwork or digital art experience: Immersive Van Gogh showcases some of the marvelous ways art may evolve in the future.

Immersive Van Gogh
SVN West, 10 S. Van Ness Ave.
San Francisco, CA

On view through September 6, 2021

Online: vangoghsf.com or call 844-307-4644

—Anita Chu

Photos by Cheshire Isaacs

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It’s only been a short period of time that I’ve stood beside Kanen in this autism journey—6 months ago to be exact is when I heard the official words that changed my world. I don’t know what it is about those words that find a way into a mother’s soul and crushes her spirt but they do. I think mainly because we know this world is not designed for different. It’s simply not made for our child.

During the grieving process you might find your self slipping into the darkness that surrounds any diagnosis. Praying for a light at the end of the tunnel. Before autism changed my world, I was motivated. I was selfish. I was everything you would expect a young 25 year old girl to be. And overnight I knew I had to grow up far beyond the years of my peers.

It was almost instantly that I stopped relating to girls’ night out or “Sunday Funday’s.” While my friends were out living their best lives, my life suddenly felt like I was parachuted into the middle of a dark jungle, expected to walk down a path I’ve never seen before. With no directions, no map, no flashlight, and definitely no tour guide.

Along the voyage I learned I wasn’t alone. I found other mom’s in the dark. And they did something remarkable. Life changing even. They took a seat right beside me. Maybe they sat for only a moment, maybe it’s was for a few days, or a week, or a month. “I will sit in the dark with you, for as long as you need. Whenever you need” they said.

I’ve learned life will throw you curveballs you were never prepared to bat up for. And when they hit they’ll leave bruises that might take a lifetime to heal. It’s okay to cry, be angry, mad, sad, frustrated, and confused. To feel like you’re lost in the dark. Feel all the feels, you’re human too, remember that. But just know you’re never alone. I’ll always be here to take a seat with you. For as long as you need or whenever you need.

Samira is a 25 year old single mom to a 2 year old son Kanen Arley. Her son Kanen was diagnosed with severe non-verbal autism in September of 2020, which inspired her to start sharing their journey through My Charming Arley on Facebook and Samirasstella on Instagram.

It was 3 a.m. White noise screamed in my ears. Besides the small glaring red light of a baby monitor, I was engulfed in darkness. My body was so tired my bones ached. All this as I held onto a small tiny human praying for him to sleep. The five hours before I had been in and out of 20 to 45-minute chunks of sleep, on the nursery floor, in the rocking chair, or my bed, always just long enough for it to be painful to wake to the cries and I would will my body to get up again.

I’d just wonder why my six-month-old baby hated everything at night; sleep, his bed, and possibly even me. I was on the edge. The days I would recoup, but when night came the darkness crept in. We were past the newborn stage, I had read so many sleep training books and had tried it all. Breastfeeding was a struggle so I couldn’t even rely on it. I was six months into parenting and already failing. My only hope was that it wouldn’t last forever. I held onto everyone’s words “he will eventually sleep.” I was so tired.

The thing is that the sleepless nights continued, for weeks, then months, and then years. My son was diagnosed with autism. Which explained so much, but also meant the sleep issues could last forever. Although, he always would sleep just enough that it wasn’t as much of a concern to others, but then other things were getting harder. There was a lack of communication, meltdowns, harm, self-harm, and silence. I was so lost.

Happy moments were in-between the hard. Beautiful and happy moments that I treasured and still do. He found his love for water, music, and tickles. He was a sweet and amazing boy. Some days there were things I couldn’t understand; a slow progress and lack of adjustment to everything. The typical didn’t come.

I had been around children my whole life and cared for many. I would think: Why am I such a bad mother? I should be good at this. The nights continued to be a dark a lonely place. Even as my husband helped, I would sit in the next room and cry.

Home alone with my toddler, the days were lonely too. I would lose my cool and then hate myself for it. We couldn’t live the life I thought we’d live. We couldn’t go many places and when we did, all I could do was assess the differences between us and everyone else. No one really seemed to understand, which made it all the more lonely. Now that time has passed, we’re in a much better place. Sleep is not perfect but much improved, communication has grown, and most importantly I understand and know why my child is the way he is. He takes in the world differently, he thinks differently than me, but my goodness it can still be really hard. Now the progress and behaviors come in waves and many times I pray alone for calm and patience.

The greatest resource I have now is other moms in my life who travel a similar path. I began following a group led by Kate Swenson who once said “I’ll sit with you in the dark.” This immediately resonated with me. I went on to meet amazing women who had been in the dark and were willing to sit with me there. With them, I can just say we had a hard night or day and they automatically understand. These are people I probably wouldn’t know or relate to in many other ways but are now my best friends, my hope, my shoulder to cry on. I have friends who I know are a phone call away. Some whom I listen to chat away in my earbuds while I sit alone, in the dark, willing a six-year-old boy to fall asleep.

If you’re a parent of a special needs child, a new parent or a lost parent and you find yourself in the dark literally or figuratively, know that I understand you. Reach out to someone who can understand. I will cry with you. I will listen to you. “I’ll sit with you in the dark.” It will save you.

Jaime Ramos, is a mom from Colorado. She's married to Isaac and has two kids, Amelie and Jesse. Jesse, her Johnny, is on the Autism Spectrum. She went to school to be a filmmaker, but now spends her days mainly as a stay at home mom.

 

It’s no secret being a mom is hard. I think it once was a secret, but it isn’t any longer. Too many of us blabbing about it on the internet. I knew before kids it would be, but It’s a different kind of hard than I expected. Mothering is a paradoxical life event. An ability I was born with. A biological and worldly life calling I never doubted. It’s a weight though. A heavy life-altering load. It changes your identity, It consumes you in every way.

I have two kids. They are my everything. My oldest, Johnny, is five and on the autism spectrum. Something I wasn’t prepared for. I’m consistently trying to learn and grow, but it’s hard. There is no guide book given to the parent of any child, but especially a child with autism. We have a lot of ups and downs.

Everything in our life is off the beaten path. It’s hard to explain, but we have days, and sometimes weeks, where Johnny is more engaged and aware. He is still autistic and himself but it’s like he is with us more. He has more gains and wins. I’m not going to lie, it’s easier. It’s the time of hope and payoffs to all the hard work.

The other times that my husband and I usually compare with babies “Wonder Weeks”, he’s grumpier, temperamental, and sensitive. These weeks bad behaviors like spitting, screaming, meltdowns, rough nights, etc. become the norm. During these times I feel down, lost, and discouraged. The older he gets, the back and forth between these times get harder.

I should expect the roller coaster, but I always hope they will level out, and hopefully with us on top. On the hard days, I try to stay positive but doubt and worry swarm my mind. This week, it’s very hard. It’s hard not to internalize your child yelling at you, hurting you, and hurting himself. The worst is how I don’t know how to make it better for him. I don’t know why or what is causing it.

When you have a child you take on the responsibility for their life. It’s your job to raise, protect, and teach them. I’m trying my hardest to do those things but it wears on me. Right now it feels like I’m talking at the wall. Like teaching is off the table. It’s pure protection, planning, and defense. I need breaks from my child sometimes. Not in the cute hiding in the bathroom eating a candy bar way, but in the crying into my pillow wishing I had more endurance and patience way. A way that hurts my soul that makes me feel wrong.

I don’t know what I thought motherhood would be. I’ve taken on an enormous task I knew wouldn’t be easy, but I didn’t quite understand the effects. I don’t feel like my child needs to change or fit, but more like I’m the one that doesn’t fit. I should be strong and endure. I should be able to do what needs to be done. I should be able to stay calm in the storm. I do those things 90% of the time, but it takes a toll. Some days it breaks me a little bit. It’s my darkness, but luckily I know it will go. I’ll go for a walk and I will recenter myself and get back to it because I’m the mom and I love my kid.

This post originally appeared on Johnny's Spirit.

Jaime Ramos, is a mom from Colorado. She's married to Isaac and has two kids, Amelie and Jesse. Jesse, her Johnny, is on the Autism Spectrum. She went to school to be a filmmaker, but now spends her days mainly as a stay at home mom.

 

mom and baby

Photo: Adventures in Autism with Murphy

I’m Shannon and this is how autism helped me find myself. My true self. I’m the proudest boy mom to the two most amazing boys. One of those boys was diagnosed with autism two years ago and completely changed everything I thought I knew about myself and autism.

The day our “Adventure in Autism” started was the darkest day of my life. I felt like I was being forced to go on a journey I didn’t want to go on. I did everything I could to keep from boarding that plane. I tried for the longest to keep that plane from taking off. I just knew this flight we were reluctantly on was headed to crash and burn. I feared the label, autism, more than anything I had ever feared before. I had feelings of shame. Despair. Loneliness. I talked about autism only when I had to. I never openly told anyone my son was autistic unless they asked. I thought that with enough therapy we would cure autism right away. It would be gone as quickly as it had appeared. No one would ever have to know. I cried at the sight of puzzle pieces and I only acknowledged autism during the month of April.

Through all the resistance our journey continued. Day after day. Month after month. Autism was still there, but so was my son. The son I knew before the diagnosis. The son I had fell so in love with since the first days our eyes met. I started to see that autism had always been there, even in the moments that I had put my blinders on. I quickly came to the realization to not love and accept autism was to not love or accept my son.

Day after day, I started to open up little by little. But I was still very guarded. See autism can be a very controversial and confusing world to an outsider like myself. I never thought our hard was “hard enough” and I didn’t think we were worthy. My son was diagnosed with Level 1.High functioning. He could talk. He played with other kids. He made progress. Everyone I associated with autism had it so much worse than us. I didn’t want to seem ungrateful. I didn’t want to hurt anyone’s feelings. I didn’t want to offend anyone. Puzzle piece or infinity symbol? My son has autism or is an autistic? High functioning? Labels? Was I suppose to celebrate the month of April? Was I a bad parent because I worshipped ABA and all the therapies? I kept quiet. I talked about the good things about autism. My new perspective. My journey to acceptance. The progress my son made. The beauty that this journey had shown me thus far. Every time I got the urge to speak about our hard, I shoved it down. I buried it. I continued to show the Disney side of autism. That’s what people wanted to hear about right? People didn’t want to hear the negative. And then my son regressed.

I watched everything we had worked so hard for the past year disappear slowly. I tried to grasp and hold on to our world as I watched it fall apart. I had found myself once again in a dark place on this journey. Except this darkness was different. This darkness was darker than any black hole. Lonelier than any feeling of isolation I had experienced previously. The presence of even the smallest glimmer of light was absent. The sheer hopelessness of our new reality engulfed me. And so I got mad. Mad at this journey. Mad once again at autism. Or so I thought.

I quickly realized it wasn’t autism that the source of my anger was me. It was me. I was so very angry with myself. I realized that I had created my current reality. I was the one who stayed quiet. I was the one who didn’t think our story was worthy. I was the one that stayed submissive about our journey. I sadly realized that the current reality I found myself in, darkness, loneliness, and isolation, could be my son’s forever reality if the world stayed the way it was.

And so I started talking. I started sharing our worthy story. I started talking about the hard. I started processing my feelings through writing. Our world was still very hard. Sharing our story didn’t have any change that. But I started to notice that I was less and less alone. People willingly boarded the plane with us and joined our adventure. That darkness that I talked about earlier, I started that see a glimmer of light way off in the distance. I finally started to feel our story was worthy. I finally felt we were seen. Seen by my parents. Family. Friends. Other moms. Special needs moms. Moms that had a hard way harder than ours. I started to see that people saw my son in a different light. They saw his challenges, his victories. They were able to celebrate with us! That beautiful perspective autism had shown me early in our journey, I had selfishly kept that to myself.

Now that I was sharing our truth, others were able to see the beauty of this journey through our hard. They were able to join us on our adventure. They wanted to join us on this journey. And so I continued talking. And now a day hasn’t gone by where I don’t talk about our journey. I use to not be able to say the word autism. It was too painful. But what no one told me on that dark day two years ago is how this adventure would not only be an adventure about my son, it would be an adventure that would lead me to myself. My true self. Someone who isn’t ashamed anymore. Someone who speaks up for those that are different so they never have to feel less. Someone who knows the worth of her son and what he deserves. Someone not afraid to share and talk about the hard. Because it’s in the hard, that I truly found myself. My entire life was changed two years ago by one word. But it’s the best change that could have happened to me. It’s a change that I needed in the worst way. It’s a change that more people in this world today need. And for that reason, I will continue to talk and share. I won’t keep quiet. Because it’s the ones that are the most resistant on this journey that need that change the most.

This post originally appeared on Adventures in Autism with Murphy.

Shannon is a proud boy mom, Hairstylist, and passionate Autism Advocate. She lives in New Orleans, Louisiana with her two sons Murphy (5) and Merrick (2).  Murphy was diagnosed with Autism at the age of 3. Follow her family as they journey through Autism together on Adventures in Autism with Murphy Facebook and Instagram page. 

Dear Momma,

I see you, driving down the road with tears in your eyes. I see the deer caught in headlights look as your hands firmly grip the wheel. You sob, uncontrollably, afraid to utter the words that well within your body. I know you utter how much your child is loved, how you wouldn’t change them for the world, that you will get through it together but I know you’d give your life in a heartbeat to have it so your child didn’t struggle with aggression.

I know the type of day you had. The one where you listened carefully as little feet hit the ground and you cautiously walked on eggshells trying to figure out just what kind of day you may have. You tried to find the perfect clothes, that didn’t tug or pull on your little one’s body. You gently brushed their hair avoiding any snarls for fear that one misstep would send you into a place no parent ever imagines you could be. I know you spent the day offering tokens for positive behaviors and lavishing your child with the love they need to know they are so precious, so wanted, so exceptional that they haven’t been put here just to change your world but to help you change the world for them and others who will walk in the same shoes.

I know it’s late in the day. You’ve iced the bruises and yet your heart is broken. You carefully cradle your child and secure them in their seat to drive. A drive might fix it, or at least keep your child safe and allow you to release the pain that has built up inside, all day. As you head into the darkness I know you wonder if anyone gets it. I know you have been told you are “too much” by friends because well, maybe you are. Maybe the pain and suffering you live with are too much for others to bear, but not me. I am here Momma, I am here for you.

I’m driving too, my child is buckled in. I look in the rearview mirror, and I see you. I see your eyes, darkened with sadness, your cheeks, tear-stained from not just the physical pain but the emotional pain. I know your fear. I live it too.

Aggressive autism isn’t talked about a lot. Most parents fear coming out, afraid to be honest with others or even themselves. They fear saying it out loud because then, it’s true. They fear judgment. They don’t believe they will ever be understood and so, they live in hiding, covering up their bruises with make-up, wearing long sleeves, and perhaps going so far as to get tattoos to hide the scars, at least the physical ones that others can see.

Momma, I want you to know, I see you. I am here. I am you. Except, I am tired. Tired of doing this alone. Tired of hiding. Tired of being ashamed because ashamed I am not. My daughter is more than her aggressive autism and when the autism aggression takes hold of her, she, the child I birthed is gone. She is morphed into a being that she cannot control.

As I rock her, try to gain control of one arm or another to keep her from hurting herself or someone else, I whisper, I am here. We will do this. Together. You are special and I will work through this by your side. She flails and screams unable to control herself, in that moment I find myself in what feels like an out of body experience, turning my mind away from the searing pain of the bites, pinches, and hair-pulling because I know this is not my daughter. And sometimes, sometimes as quickly as it started, that autism aggression escapes her body and she is left limp.

I cradle her in my arms. Rocking. Rocking her. Reminding her I am with her. She is mine and she is so loved.

Momma, come out. You are not alone. You need love. Your child needs to be celebrated, to be shared, to be lavished with the same gifts of other children who don’t live with aggression because of her aggression, she can’t control and Momma, there is nothing to be ashamed of. You show up. Daily. You walk beside your child. You show them love and you, my friend, are their greatest advocate and there is no reason to hide any of that.

 

This post originally appeared on www.messyblessymomma.com.

I'm a mom of many who is living her best life navigating a busy world full of ups and downs. Managing five kids and one with additional needs I enjoy learning through living and sharing what I know. I can't wait to share our Messy World with you.

Dear Confessional,

I absolutely love writing poetry. I love it so much that in my own blank space of thoughts, I constantly make up poems about anything in my head. Something about the rhythm and melody of the words just moves me—it makes me feel so vulnerable and connected. I published my first poem when I was only 7.5 years old. From the moment that I was able to write, I was reveling in my own private world on paper.

One of the most personally impactful pieces that I have written and not yet published still resonates with me today, even more so now because of the relevance to current events. You see, I am the biggest proponent of strong people. Not physically strong, but emotionally unstoppable—people who are selfless and brave and wholehearted. Maybe a part of myself identifies with inspiring strength through weakness; finding the light through darkness; discovering motivation and empowerment through pain. I have always admired and worked to emulate the qualities in those who are passionate, giving, positive, and relentless in the pursuit for fairness and freedom.

As Harriet Tubman has been named to replace Andrew Jackson on the $20 bill, I find it only fitting to offer my personal tribute in her honor with a poem that I wrote back in 1996.

The Underground

Born in darkness, color of night

suppressed by living, suppressed by life

lingers a child denied from light

of a Maryland moon upon a bony face

battered, bruised with black-like stain.

Piercing cries replace

the resonance of a black whip beating night

upon a black exterior.

As gales wailing, waning groans grasp a might

expelled through song

of oppression and search for salvation.

Pieces of earth fall from a face from the grave after days so long;

and so she rises with the same shovel

to dig, to live. To hide among the color of night,

she fights for life through strife. Her tunnel

guides the weak, weaving finger upon finger

hand by hand creating an extraordinary force.

Fighting for freedom, her name lingers

through the air as trees whisper secrets,

humming a hymn in harmony with sound

of bare feet pit-pattering and placing permanent impressions upon solid ground.

As wisps of words whistle within strands of hair,

those who walked the path of Tubman found

themselves in Maryland, 1850, somewhere.

“Down in the waters,

down in the waters children” extend aged hands

to a black “Moses.” As now stands

death, stands life. Fate is immortality with a gun

who casts the coward within

those who turn and run.

Born in darkness, color of night

suppressed by living in terror and strife

lingers the woman who guides the light.

So much admiration and respect for this incredible individual.

“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.” — Harriet Tubman

with Love,

Ruthi

Ruthi Davis is a the Founder of Ruth Davis Consulting LLC with over two decades of success in advertising/marketing, media/publicity, business development, client relations, and organizational optimization for a variety of clients. Ruthi is a proud mom and influencer in the parenting and family market as founder of the Superfly Supermom brand.