Guest Post, Parenting, Special Needs

A Love Letter to My Fellow Autism Mom

BY AMANDA DELUCA

The love language for a special needs parent to feel seen, accepted, and understood is as simple as a head nod, and a “me too” on a zoom call or a quick chat on the phone. Or maybe even in the grocery store where your child is having a hard time.

If you’ve ever been that person for another special needs mom, you’ve changed their life, you’ve made them feel seen, and they thank you for it.

Thank you for sharing your story of walking through the hard, so that mothers like me can learn what may lie ahead.

Thank you for acknowledging my hard, and reminding me it’s healthy to grieve but we can’t stay there.

Thank you for encouraging me to use my voice to advocate for my son and for so many others who share his daily struggles.

Thank you for telling me “I’m not ashamed of Autism, and you shouldn’t be either”.

Thank you for teaching me that love needs no words, and that communication isn’t just speech. For teaching me to be gentle with myself, and my husband.

Thank you for your bravery when speaking about aggression and self-injurious behavior so that the stigma can be shattered and we can work on continuing to normalize it, by publicly speaking about it.

Thank you for calling me when your child just received their diagnosis and confiding in me during one of your most difficult days.

Thank you for inviting my son to the birthday party, even if it’s too hard for us to come.

Thank you for encouraging me to tell my story, to share my hard, and to let the world into our journey.

Thank you for never judging if we light it up blue, say autism awareness or acceptance, say has autism or is autistic because there are no clearly defined rules of what we should be saying and when.

Thank you for saying “I understand” when I talk about meltdowns, sleepless nights, medication trouble, and food aversion.

Thank you for acknowledging my hard, and trying to help me figure out the solution.

Thank you for providing me with powerful mantras like “find the joy”, “dreams don’t die, they change”, and “on we go”.

Thank you for simply saying “me too” when I felt like I was the only one.

Thank you for always lifting me up out of the dark hole of the internet, and holding my hand until I’m ready to try again tomorrow.

The love you have for your children gives me hope, your bravery to share your story gives me confidence, and your honesty about this journey gives me the strength to carry on.

Thank you for all of your love, A fellow Autism Mom

Thank you to Amanda DeLuca for sharing this piece with us. It originally appeared on her blog https://jacksonsjourneyjacksonsvoice.com/

Amanda lives in Ohio with her husband, is a mom of 2 to Monroe, and Jackson. Her son is on the autism spectrum and is what inspired her to begin her journey through advocacy. In her free time she enjoys teaching at her dance studio, co-hosting the Momming Autism podcast, and writing for her page Jackson’s Journey, Jackson’s Voice.

Parenting, Special Needs, The World We Live In

World Autism Day

World Autism Day is today– April 2nd.

This is our fourth World Autism Day. The irony is not lost on me that it was a beautiful day much like today in April, a month that shines the light on Autism, some years ago when we became personally aware of Autism as it entered our lives.

I could pepper you with statistics– 1 in 54 children are living with Autism. Boys are four times more likely to be diagnosed than girls. Autism comes with a slew of co-morbid conditions. Early intervention is essential. Funding for much needed therapies can be very difficult to obtain. There is no cure.

But the stats are stats and what is more important than stats are the living breathing 1 in 54 people those stats represent.

What is important are the advocates out here fighting for awareness and acceptance.

What is important is making the world a kinder, more inclusive place for those living with Autism.

On this day you may see feeds similar to mine flooded with words about Awareness and Acceptance. Both are important so, so important.

I believe that awareness leads to understanding and understanding leads to inclusion and inclusion leads to acceptance. As a mama to two amazing little boys on the spectrum, that is all I want for my boys– acceptance. I want them to be included, feel loved, be treated with respect and kindness, and be accepted for everything that they are.

Autism is a part of them, but it is not the definitive part or the sum of all their parts. It is just a piece of the puzzle that makes them whole. They are kind and sweet boys who love hard and deserve acceptance.

We celebrate our children on this day. We celebrate them for who they are and who they will be. We celebrate them for all the hard fought, hard won accomplishments. We celebrate the families and the caregivers. We celebrate the friends. We celebrate the teachers and the therapists.

We celebrate each and every single person who sees us and loves and accepts our family.

My hope is that on this World Autism Day you take some time to learn more about Autism Spectrum Disorder. My hope is that you will talk to your children and teach them about differences and being accepting and kind. Talk to them about inclusion and understanding.

Because I promise you if you do you will be part of the change this world needs.

You will be part of the change OUR world needs.

I would not change my boys for the world, but I surely would change the world for them.

Parenting, Special Needs

Five Things I Wish I Had Known About Life With Autism

Autism Spectrum Disorder became a constant companion in our life one April day a few years back. I think back to that day and realize how naive I was and how unprepared for the journey I was. I wish I could go back to myself on that day with my tear filled eyes and fill myself in on a little of what I’ve learned so far.

1. It is going to be OKAY.

It will be okay…whatever your version of okay looks like. It may be filled with therapies and mountains to climb and hard at times or it may be smoother with less interventions needed. However it looks, you will adapt and you will learn and you will grow. And you will be okay.

We’ve managed to find our stride and what works for us. And is it how I originally pictured life? No. But it is okay and we’re doing alright.

2. Self, please know that your child has not changed.

The world might look and feel a little different right now and that is okay, but your baby is still your baby. Both of my boys are on the spectrum and both of my boys are still the same happy, loving, and adventurous boys they were before a doctor ever uttered the diagnosis that felt like it changed everything. It really took me a minute or two to get that through my head, but it was a valuable lesson to grasp.

3. My child has Autism, but it does not define him.

Autism is a part of my boys. It is simply one facet that makes up their whole. It doesn’t define them. They have Autism. Autism does not have them. They are smart because they are smart. They are funny because they are funny. They are kind, loving, and stars in my universe because they are them and not because of or in spite of any diagnosis.

4. If you have met one person on the spectrum, you have truly only met one person on the spectrum.

Yes, there are some shared characteristics. Yes, there are common ways in which Autism manifests itself in people. But, just like you or me or the person next door, all people on the spectrum are unique too. My two boys are very different and their Autism looks very different as well. They are unique. Just because your cousin’s neighbor’s sister’s friend has a child with Autism doesn’t mean you know my child or what they need.

5. Subject Matter Expert: My Kids

Just because I am a mother with two boys on the spectrum doesn’t mean I am a subject matter expert on Autism. Shoot, I am far from it. What I am an expert on is my boys. I know what works for them. We’ve worked hard to make progress and to find the right diet of therapies. I know what makes my boys laugh or cry and I know when a situation is too much for them. Generally, I can see a meltdown coming from a mile away.

Autism looks different in both my boys. What works for one doesn’t necessarily work for the other. We’re figuring it all out as we go. But you know what, we’re all going to be okay.

“Don’t give up! I believe in you all. A person’s a person, no matter how small!” — Dr. Suess

Parenting, Special Needs

“Build your tribe. Find your village. You’re going to need them.”

“Build your tribe. Find your village. You’re going to need them.”

I remember looking up at our pediatrician through tears as she said those words to me shortly after delivering my son’s Autism diagnosis.

She explained how dynamic and changing our lives would be and that we would need to find others who understood. The gravity of those words didn’t quite register with me at first.

I mean, I had friends. I had family. What did she mean I needed others?

At first, I was lost in my grief for an uncomplicated childhood that would suddenly be filled with therapies and appointments.

My heart ached for knowing that this world is not kind to those who are viewed as “different.” It killed me to know that I wouldn’t be able to protect my son for that.

It was clear early on that there were just some people in our lives that were there for a season. They fell away as things changed. I don’t fault them– the friends who couldn’t understand enough to offer compassion or the family who couldn’t understand why we couldn’t attend every gathering.

We encountered those who wanted to deny the existence of my son’s disorder. They just didn’t see it themselves so it couldn’t be so.

Our parenting was questioned by those who felt we failed our son by just accepting his diagnosis. I had someone offer me the “cure” to Autism which I believe fell somewhere between essential oils and drinking bleach. When I politely declined, she told me it was my fault my son was damaged and I should want to fix him.

All of these instances fell so early on in our diagnosis when it was still so raw.

In those first few months following diagnosis as we tried to line up therapies, enroll in early intervention, and shore up funding, I needed a life preserver so badly and it just seemed no one wanted to throw it to me.

I wanted to talk about it. But, it felt like no one wanted to take on those hard conversations. No one wanted to hear my 3 am worries spoken out loud. I felt as though everyone expected me to just smile and carry the weight on my shoulders without question.

I was sitting alone in the dark.

But, then suddenly, I wasn’t. I have an amazing family. They help with therapy appointments. They love unconditionally and they wrap us in love.

I have some pretty fantastic friends who love and accept my family as their own. My fellow Mama Bears are always there to listen on the hard days and offer no judgment.

They love us hard and we love them right back. Finding your tribe and having support can make all the difference.

Autism moved in to our lives on a beautiful April day and never left. It will be a lifelong companion. It will always be part of our dynamic. But, I’m not alone. My family is not alone. Our tribe is a good one.

“When you can’t look on the brightside, I will sit with you in the dark.” – Alice in Wonderland

Parenting, Special Needs

Worry vs Wonder

I am a natural worrier.

I can think, rethink, and worry out every single scenario possible. Becoming a parent only amplified that.

From the moment I found out I was pregnant, I worried. Every single twinge and ache and sensation worried me. I scoured the pregnancy books to calm myself and prepare for what was to come.

Along with that worry came wonder.

I wondered each pregnancy who my babies would be and who they would become. As I have watched them grow there has been wonder in all they do and all they are. Never far away, though, was worry. In the early days I scoured all the parenting books to calm myself and prepare for what was to come.

Fast forward to an April day where I sat in the pediatrician’s office when I poured out my worries about my son and his development. There is no parenting book to prepare you for the news that your child has a disability.

That day set off a new set of worry and wonder.

I worried that life would be unnecessarily hard.
I worried that he would never speak.
I worried that he would never be independent.
I worried that he would be lonely.
I worried he would never have a friend.
I worried about what would happen to him if something happened to my husband and me? Would someone love him the way we did?

I’d lie awake at 3am and worry about anything and everything I could imagine.

Frankly, I wondered what the hell we were going to do. What was the right course of therapy? What was the right type of educational setting? How could I juggle all the appointments and evaluations with work? How would we pay for it all?

But what replaced that worry and wonder?

Wonder of how hard my boy worked. Wonder at how far he has come. Wonder at all he knows and tells me. The worry is there, but they showed us odds and we exceeded the expectations.

I wonder sometimes how we did it all, but we made it through.

Then last March. Deja vu. Round two began with another diagnosis of my other boy. All those original worries revisited me.

But once again so did the wonder as he scaled his mountains.

I once read that faith and worry cannot exist in the same place so you have to decide where to live.

For the most part, I believe that.

When I focus to much on the worry or the wondering, I lose sight of the wonder of all that is good and all that is amazing.

The worries will always be there.

I will always wonder if I am doing enough for my boys or if I can lighten their load somehow.

But most of the time, the worry and wondering is replaced by the wonders that are my boys.

Parenting

Taking the Attitude of Gratitude

This year has been a tough one. I think it threw us all for a loop. We all had plans and goals and dreams for the year that the world has other plans for.

We were cruising right along until a worldwide pandemic and slow down stopped us.

If I take a moment to step back and reflect, there is a lot for me to be grateful for during this season of thankfulness.

I would not fault anyone for marking this the worst year and writing it off as such. It is easy to lose sight of all the great things that 2020 brought when we think too much about what it didn’t.

I worked full time for the first eight years I was a parent. I missed out on so much extra time with my older kids. This year gave me a lot of additional time with my kids that I wouldn’t have otherwise.

📷 : PS Photography, LLC

During the shutdown we spent more time as a family enjoying each other than we ever have. We played games. We binged on movies. We spent ALL the time we could outdoors. I think our front porch, front yard, and swimming pool got more use than they ever have.

My husband and I spent so much more time talking, connecting, and yes, bickering than ever. I wouldn’t trade any of it though.

I think I spent more time talking to my parents and siblings this past year than I have in a long time. Using FaceTime requires a bit more communication than just sharing the same space in a room.

We were and have been (knock on wood) able to maintain good health.

My husband’s job has survived a shut down.

We have a warm, safe space to lay our heads down in each night.

The fridge is stocked and the lights are on.

We have good friends and a tribe that loves us and it is there for us. They allow us to return the privilege.

I am thankful for the amazing teachers in my children’s lives that worked so hard this year to be partners in learning with us. We are so lucky to have the educators we do who love our children as much as we do.

We have been really lucky to have amazing therapists for our boys. They have both made amazing strides. I am thankful for finding them and for all the amazing work they do.

I have really learned that sometimes life is best lived when you finally get that it isn’t about always having what you want, but wanting and appreciating what it is that you have.

When you take the time to realize who and what really matters, you’ll find that you’ve really missed out on nothing.

📷: PS Photography, LLC
Parenting, Social Media, Special Needs

The Why Behind I

I have always been a lover of the written word. I love to read and I love to write. I spent my college years studying communication and the art of crafting it.

Post college graduation I ended up stuck in a job I hated that was the furthest thing from creative. I still read, but I had pretty much abandoned my writing aside from a rambling Facebook post here and there.

In Spring of 2018, my oldest son was diagnosed with Autism Spectrum Disorder. Around that same time my husband landed his dream job and the dream of me being able to stay home with our kids became a reality. By that October I was a full time stay at home mom.

I love being able to home with my kids. I am grateful for my husband’s hard work that allows us this opportunity. The transition from the workforce allowed me to also think about creative outlets again.

I had been toying with the idea of blogging for a while. I wrote a guest post for one of my favorite blogs and constantly formulated blog ideas in my head. But, to be honest, every single time I came close to taking the leap, I talked myself right out of it.

Enter Toledo Moms

Earlier this year Toledo Moms launched in my area and I was an absolute fan from the start! It is an amazing resource of moms in my area that covers all sorts of life stages and topics.

They put out a call for writers in February and I applied. I was hopeful and nervous about putting myself out there, but so excited to be welcomed on their team. I am proud every day to be one of the amazing Toledo Moms.

Joining up with Toledo Moms and writing with them relit my fire. It gave me the push I needed to start my own blog and put my thoughts out there.

So I did it. This little work of heart launched this summer. It is a work in progress.

That’s the how, but what’s the why?

So, I have explained how I got here, but what’s the point? What is my point? Why do I put my thoughts out there like I do?

Well, it is my passion. I love to write. I love to create. I love the craft with words. I don’t think I have the great American novel in me at this point, but I do have some pretty big thoughts and opinions.

And, Autism. I have two boys who are on the spectrum. They are at two very different places in their journeys and their autism manifests in very different ways. One very important thing I have learned on this journey with them is that even though autism is fairly prevalent, it is still very misunderstood and the resources are still very limited.

When my Jack was diagnosed I was sent out into the world with basically a wing and a prayer. I learned to research. I learned the lingo. I sought out other mothers who were navigating similar paths. I learned a lot from some amazing moms who have chosen to share their hearts and families with the world on Facebook and blogs.

I also learned to advocate like a mother. I learned very quickly what it means to be the driving force and push for evaluations, push for funding, and to seek out the right interventions and providers.

I choose to use this blog in part to be a voice for my sons and for others like them. Education is key and understanding is so important. If I can spread some awareness, sprinkle some kindness, and help someone else along the way, I will consider it a success.

I am me first.

I don’t just intend to blog about autism. It is a big part of my life now and a huge piece of our family dynamic, but it isn’t everything. My boys have autism, it doesn’t have them. So, while it is always there and always with us, it still isn’t everything.

I’ve got a pretty awesome husband and I have two amazing girls to go right along with my boys. We have some pretty awesome (mis)adventures that I like to share too. There is a lesson in everything.

While we are living in a moment in time where the world seems so heavy and sad and angry, my message is kindness and hope and the power of yet. I hope that always shines through.

Parenting, Special Needs

What I Wish Someone Had Said to Me

Dear Mama,

Today you received your little one’s diagnosis. You have answers. Sometimes answers make more questions. Sometimes answers suck. Sometimes answers are just hard to absorb.

Today is a hard day, I know- I’ve been there. Sometimes there is no preparing your heart no matter how hard you have tried.

The day I received my older son’s Autism Spectrum Disorder diagnosis I was a cornucopia of emotions.

I was sad.

My heart grieved. My tears weren’t because there was something “wrong” with my child. The tears fell because I was accepting that autism would be with us forever and autism would complicate some things for my boy. All parents want life to be as simple as possible for their children and autism added a caveat of hard to his life.

I was angry.

How many times in our lives do we say, “It isn’t fair?” That is how I felt. It didn’t feel fair that my boy would struggle.

It didn’t feel fair and I felt angry that the pediatrician didn’t take me seriously when I first suggested something wasn’t right. We lost precious months of early intervention because I wasn’t being taken seriously.

I was lost.

Okay. We had a diagnosis, but now what? They hand you a nicely typed report and send you out to navigate it yourself. There is no one size fits all therapy combination and nothing holds guarantees. It took me a moment to find my footing again.

I wish that someone would have told me that it was okay to feel my feelings. Because you know what? It is okay to feel every which way you feel in this moment!

Be mad. Be sad. Be relieved. Be stressed. Be strong. Be whatever you need to be. Give yourself the grace to feel what you need to feel.

I don’t have a crystal ball and I don’t know that it will ever be “alright” in my life so I can’t truly tell you it will be “alright” in yours.

What I can tell you, though, is there is nothing like the power of a mother.

There is nothing like the unstoppable Mama Bear who will be there and advocate and take to task whoever’ be it a doctor, insurance company, therapist, school, whoever she has to to fight for her child.

There is nothing like a Mama who loves beyond measure and believes in her child.

No matter where this path takes you, know that you’re not alone.

And know that you and your sweet child will be okay- whatever your “okay” looks like.

One day you’ll look back and these feelings you have now won’t be so raw. You will feel stronger and more seasoned. You will have a new understanding of yourself, your child, and the world around you.

You will get to the other side.

I’ll be cheering you on along the way.

Love,

Me

Parenting, Social Media

When There Are No Words

This blog has been quiet lately. It hasn’t been because I’ve forgotten about it or abandoned it. I simply haven’t been able to find the words.

Things in our world seem so heavy. There are literally cities burning. There is social unrest and passionate pleas for justice. There is COVID. There is a disturbing, disappointing, and disgusting election cycle well underway.

This is all on top of our daily lives. We each have our own struggles that we are facing down. It feels like there are just so many proverbial balls in the air at once.

All of this is giving my anxiety its own fresh set of anxiety.

There are some topics I try my darnedest to avoid, but sometimes silence is compliance. Sometimes we have to use our voices and our platforms to speak up and speak out. Sometimes we have to do this even when it is heavy.

I am just a mom. I am a mom who is doing my best to raise up her children as good humans. I am also a mom who has two little boys who fit into a marginalized segment of society. I am a mom of two young ladies who I want to raise to be fierce and strong and unstoppable.

I am a mom and a woman and a human who is existing in a world right now that seems to openly tell some of us we’re wrong. It tells us we are wrong because of the color of our skin or because of who we love or because of our gender or our social status or because of our different abilities. It tells us we are wrong because we care too much.

Yet, these same loud voices that tell us we are wrong for simply being who we are made to be refuse to accept that it is the content of character that one should be judged by.

Those loud voices are wrong. Racism is wrong. Sexism is wrong. Xenophobia is wrong. Homophobia is wrong. Discrimination is wrong. Harassment is wrong. It is all wrong.

These loud voices hide behind computer screens and keyboards and find themselves emboldened by the current state of affairs. They lob insults and words of hate towards others who feel differently, who think differently, who believe differently, and who, in some cases, are just different from them. It is all wrong.

Those loud voices fail to accept that it is your actions and your treatment of other people especially those who may be different from you that tells me more about you than anything else.

Somewhere along the line being a bleeding heart, having a heart, or just caring for others in general became a bad thing. I refuse to accept the “screw you because I got mine” mentality as the status quo or even as mildly acceptable. I doesn’t sit well within my soul or my heart.

I speak openly about kindness and how it matters. I speak openly about choosing your words carefully because they have impact and they matter. I advocate for love and acceptance. I believe in these principles in the core of my soul.

Regardless of the powder keg that is social media and society and our leader, I truly believe that kindness still matters. Words should still be chosen carefully. Love still wins.

The whole world can be divided. It can feel like it is on fire. The hatred can rage. It won’t change me or my heart or the content of my character.

If anyone of us want to change the world, it starts at home. It starts in how we raise our families and in how we treat others. It starts in sometimes stepping back and learning from others and getting a little uncomfortable. It starts in understanding one another. It starts with kindness and love and being a good human.

Be kind.

Love one another even when it is hard.

Be a good human.

Parenting, Social Media, Special Needs

The Power of a Word

Words. They matter.

I spent the better part of my post-high school academic career studying the written and spoken word and how those words matter.

I also have three children who struggled to find their voices. They have worked through intensive speech therapy to be able to find and use words.

The power of a word is not lost on me.

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I teach my kids to think before they speak. Is it kind? Is it truthful? Is it necessary? If they can’t answer all of those questions with a yes then maybe they should think about saying whatever it is before they do.

This is why it bothers me so much when people say, “They are only words.”

Words have power.

The way we talk to people isn’t a reflection of them as much as it is a reflection of ourselves. The way we talk to and about our children becomes their inner voice.

I’ve had this on my mind a lot for a few months now. It seems like in our current culture it has become a social norm to be a “keyboard warrior” online and to excuse really, really awful behavior because “they are only words.”

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I really got to thinking about this last night after what turned into a heated social media discussion, if we can call it that, with someone I respected. I generally try not to engage and avoid hot button issues- especially when I know the other parties aren’t particularly receptive to different points of view. I know it was 100% it was my fault for kicking the proverbial bees nest, but it was most certainly not a respectful discussion on either side. I am not too proud to admit it wasn’t a good look for either of us.

Follow me as I dig just a little deeper here…

It isn’t just the written word that matters. It isn’t just what we see each other write online that matters. It is true that social media has empowered a lot of us to say things, really unkind things that we wouldn’t necessarily say to someone’s face and we should think before we type, we also need to think again before we speak.

The Power of a Word

There have been moments in my life where words have been really influential on me: The words contained in the acceptance letter to my dream college. My husband asking me to marry him. My Grandmother’s marriage advice after telling her I was engaged. My Dad’s wedding toast to my husband and me. The first time my children told me they loved me. Any time someone told me “You can’t” or that I would fail.

I also can think of moments where words didn’t just have an impact on me, but also on my view of the world or someone in it.

Once, after the birth of a new baby, some relatives came to visit and meet him. One of them had been wanting a baby of her own and working their way through the options. She mentioned how she was slightly discouraged because another family at their church had received yet another foster placement while she was still longing for her first. Her husband responded with a remark about how that child had autism and that family was able to get another child because they were willing to “take whatever garbage is thrown at them.”

Now, it was a passing conversation and comment and the people involved probably don’t remember it, but I do. Six months later as my oldest son received an Autism diagnosis, it resurfaced in my mind. It took up space and it lives there. Every interaction this person has with my child, his words come to mind.

A few summers back a new family moved into our neighborhood. My girls were thrilled to have more kids their age to play with. It was great at first. They played frequently and I was all for it until I started to hear the way these children were speaking. They were being mean to my girls- cruel, really, and thinking they were funny.

Their words weren’t welcome and it was tough to navigate, but my girls learned they needed to speak up for themselves, but also to believe in themselves and they were worthy and capable of great things.

Around the time of my first son’s ASD diagnosis I reached out to the few mamas I knew at that point in time with children on the spectrum. I was lost and looking for guidance. Out of them, most were encouraging, offered support, and gave some advice. One, however, told me to get over it and not make it about myself. She had nothing to offer and I would figure it out just as she had.

That stung. It put up a wall in our friendship. I often think about her words when I am sharing my perspective on our life with the spectrum. I hope that should another mama ever come to me looking for a lifeline as I had been that I remember her counsel and offer better.

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These are only a few examples of the power of words, but they were impactful enough to bear mention. They were moments said in passing that have an echo that remains.

Lately, this world doesn’t seem built for kindness. To have a soft heart or to admit your hurt almost instantly is met with more insult or a suggestion to “toughen up.” I don’t agree with that, but I am also not saying that we should all walk around in bubble wrap with fragile egos and tiptoe around people. But maybe, speak less and think more before you do.

Is it kind? Is it truthful? Is it necessary? If our answer is no to any of these questions, then maybe we need to rethink our words.

The old childhood rhyme “Sticks and stones may break my bones, but words will never hurt me,” comes to mind. Maybe words can’t break a bone or cause visible damage, but words do in fact matter. Words can break and words can damage.

Words have power.

It is up to you whether or not you choose to use your words and your voice for good.

Choose your words wisely.

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