awareness + acceptance

My boy with autism. Or my autistic boy. This is a very important thing.

One is a person first, after all, he is a beautiful boy who just happens to have autism.

The other is an all-encompassing identity worn with pride.

I wish we didn’t have to choose. Can’t it be both? I want both for him.

There is no right answer, but people will tell you otherwise each way you choose.

Maybe someday my boy will tell me his preference.

Just like someday he will answer his dad when he asks him what he did at school that day.

Every day, he is met with silence and a smile. Some day.

A lot of people really want to skip the whole awareness thing and have everyone move right on into acceptance. That sounds ideal to me, but I really don’t see how one can happen without the other.

So, we continue to talk about autism to spread awareness & acceptance.

It does get a little exhausting, I will be honest.

The repetition, the hope, the advocacy on eggshells.

But I get excited, thinking about more people joining in on this awareness + acceptance thing.

I can start to see a world where communication without words is commonplace.

And maybe things like atypical eye contact wouldn’t be a thing, and maybe parents like us wouldn’t hear that word, ATYPICAL, so damn much.

In this world I picture people who understand that sensory processing is so different for everyone. How it can be downright painful for some, and never given a second thought by others.

People would be better about not taking the little things in life for granted, like outings outside of the home that for some, like my boy, require navigating a battlefield of anxiety, sensory input, and communication barriers.

They’d know that nonspeakers still FEEL greatly.

There would be just enough awareness for people to be kind, patient, & accepting of those who move through this world a little differently than most.

Raising Rebels

This boy of mine has the greatest community of Little Rebels one could ask for. He’s surrounded by kids who are raised on intentional conversations about beautiful differences. 

Kids don’t need to understand big, complex things like autism spectrum disorder to advocate for a friend. Little advocates are curious, kind, patient, and EMBRACE differences.

They know that their voice matters, and they use it to stand up for themselves and others.

There are so many kids out there who need a tribe like this one.

It’s our hope to help them find just that. For more people to be met with kindness and ACCEPTANCE and for all differences to be embraced and celebrated. Thank you for being here with us and continuing conversations around kindness and inclusion!

Get your gear at our Little Rebels with a Cause shop! We make kindness, inclusion, and advocacy apparel for EVERYbody! Ten percent of every purchase is donated to amazing nonprofits in disability services and advocacy.

I share this boy with you

I share this boy with you because he is unique.

He is a constant reminder for me that every single person I encounter is so much more than meets the eye, and maybe he will remind you, too.

While I don’t ever want to miss an opportunity to celebrate this amazing boy, I also choose to share some of his challenges, progress, joy, and everything in between.

I do this because it isn’t enough for people to just know that autistic people exist.  I want the world to understand the vastness of this spectrum including the behaviors, abilities, needs, challenges, and beauty in all people who live with autism.

I want people to learn about and celebrate differences.  When someone looks, sounds, smells, and behaves differently than you, how wonderful of an opportunity you have to learn from them!✨

When you meet someone like my boy, whose brain may work differently than yours, it may take some time and patience to understand the contradictions weaved throughout his daily life.

How someone as wild and free as the wind can also feel as caged as a bird; with words, thoughts, and feelings often trapped inside of him.

How he needs predictability and order like his sandwich cut a certain way, the same clothes daily, and to constantly see his schedule, but this same boy loves speed, spinning, and falling just to the edge of out of control.  I think all of this is how he feels safe but also feels ALIVE. ✨

I spent a lot of time trying to untangle all the contradictions inside of this sweet boy, like it had to be one way or another. It doesn’t. He is not something to be untangled or fixed, just understood, supported, and included.✌🏻

This blue-eyed boy finds JOY ✨ everywhere, and the best part is, he helps others see it too. I hope you get the chance to know him, or someone as uniquely wonderful.

Pictured: getting cozy at a photo shoot for our kindness/inclusion centered apparel brand, Little Rebels with a Cause 😍

LittleRebelsCause.com

let someone sit with you

During the years surrounding my son’s autism diagnosis, I could barely say the word “autism” out loud.  I thought I would just break down every single time and, frankly, I didn’t have time for that. To be clear, this had nothing to do with shame.  Not one day has gone by that I am not immensely proud of this boy.

It was about fear, worry, the unknown, and all the other bumps along the road to acceptance. All a parent could ever want is for their child to be okay.  Autism has a way of tricking your brain into questioning if that will be the case.  There is so much to learn and understand before some of that uncontrollable worry begins to fade.

I threw myself into research. We got on waitlists. I began on the path to truly knowing this boy.

And I wrote. I got it all out. Everything that was too hard to talk about at the time.  Processing this kind of information is not easy, and it can be very lonely. This is a big reason why I am here, sharing our story. I never want other families to feel the same confusion and loneliness that we felt in the beginning of this journey.

It has meant so much to me to connect with other autism families, some who are going through the steps to a diagnosis or have a child that was recently diagnosed, and other parents of children of all different ages and abilities.

The main message I want to convey to all these parents is that there will be MANY times that you will feel alone in this, but you do not have to be.  I constantly must remind myself of this.

I cannot tell you how many situations there have been where my knee-jerk reaction was that no one knows how this feels. The same battles, day in and day out, the medical incident reports, medical and educational decisions, the moment I saw AUTISM written on paper in an evaluation about my boy. 

Remember this: there are others who have been there, too.

Things can still be hard for me to process a lot of the time. Sometimes it seems easier to sit alone with the tough stuff. If you do this, please don’t stay there long. Let someone sit with you.

Find your own way to work through your thoughts and feelings. They are real and should not be ignored.

Talk to someone. You might find this safe person in a waiting room at therapy or the pediatricians office, on the playground, or online.  If all of this sounds impossible and overwhelming because you can’t even say “autism” out loud yet, that is okay too! It will get easier to talk about and then you will be ready to lean on others.

The best way for your friends and family to learn about autism and support you as a parent raising a child with autism is to tell them. Tell them about your child. Tell them about your struggles, your child’s struggles, strengths, passions, victories, and all the things.

They might not understand exactly how you feel, but they don’t have to. Sometimes talking through things just leaves you feeling better. I promise your people want to support you and celebrate with you and your child, you just have to let them.

I’m not saying you have to wave your autism awareness flag as loudly as I do. We all do this life differently. Find a place that makes you feel supported.

I am so much stronger than the day I walked out of that psychiatrist’s office with my son’s diagnosis in hand.  My whole family is. If you would have told me this back then, I may have not believed you.  

My boy is always growing and evolving and most days it feels like autism is always one step ahead of me.  It’s like trying to catch and examine the wind.  There is still so much unknown to wrestle with.

While I may never understand everything going on inside of this complicated boy, what I do know is that I will never stop trying, and there are so many people here rooting for him.

Originally posted in November 2020.

Wilson’s Climb x Little Rebels with a Cause

We’ve been busy over here at Wilson’s Climb! We started an inclusive clothing collection, Little Rebels with a Cause, with this sweet boy in mind. Sometimes it’s just nice when the shirts can do the talking for you.

Our designs quickly morphed into much more… for the advocates, the upstanders, and the world changers.

We make apparel with purpose for LITTLE REBELS: upstanders who embrace differences.

Our son is an adorable, curious, eight-year-old who is autistic and processes this world differently than many of us do.  We see the way his little sister advocates for him, from running to get his headphones when a noise is painful for him, to telling most people she meets that her brother has autism. She does this in the same way one might say their brother is great at football or playing the guitar. She’s proud of him.

We’ve seen the value of inclusion for both of our kids, and so many more incredible humans who are a part of this Little Rebels community. We have so much to learn from one another.

We believe words are important, and we hope our tees spark valuable conversations in your communities.

Our son’s sensory processing difficulties can make clothing choices tricky.  We worked hard to find the softest, most comfortable tees around, most with easy to tear-away tags. You’ll notice an abundance of black and white throughout our designs, as that is the only kind of tee he will wear.  

We’re proud to donate ten percent of every purchase to some amazing nonprofits. These programs range from assisting anyone with a disability in finding their inner athlete through outdoor recreation, to programs who build inclusive and ACCESSIBLE playgrounds so that ALL can play, and those who advocate for a loving and inclusive community for anyone with a disability.  We plan to introduce additional nonprofits throughout the year.

We look forward to raising awareness for these programs and making a difference with you.

P.S. A heart is one of our boy’s favorite shapes, so he helped us out by drawing the one in our mission statement.

Come see our shop at http://www.littlerebelscause.com

Unconditional Sibling Love

I’ve found it very difficult to protect my heart when it’s beating outside of my body. These days it’s running around in the form of little sandy-haired, blue-eyed kids, in such vulnerable form.  

I’ve wanted to protect these two from the Big Bad World since the moment I met them. Most of the time, my boy’s adventurous spirit would get in the way of the bubble wrapped life I had in mind for him.  

I wasn’t ready for fearless. I wasn’t ready for vulnerable. I wasn’t ready for autism.

How will I protect him now? Will he be OK?

Will he ever talk? Attend school? Be bullied on the playground? Will he have a job? Drive? Live independently? Fall in love? And commence the spiral to nowhere.

As parents, we never want our children to feel pain and sadness. Hunger or cold. Lost or confused. It tears me up from the inside out when I look into my boy’s eyes and see how confused and frustrated he can become.

I remember a moment years ago when, during one of his meltdowns, his 2-year-old little sister hugged him and would not let go. Eventually he started laughing because it became a game to try and get her off him.

I noticed something that day. The way she looked at him. It was simple and unconditional adoration. In her eyes, he isn’t “different”. He is her big brother. Her hero. Her person.

I pray that she will always see him in that same light. As time passes, the weight of his world will inevitably impact hers more.  New challenges will arise, they both will grow and change, but oh, how I hope that their unconditional love remains the same.

My children are both unique and made for one another. I can’t catch them every time they fall, but I can teach them how to help one another back up. To comfort one another. To laugh together.

They have shown us fearless. They have taught us how to find comfort in vulnerability.

My son has a phenomenal tribe of family, friends, doctors, teachers, therapists, specialists, and peers to help raise him up as high as he can go.

And he has her.

So just like that, I had all the answers to that pesky spiral to nowhere:

He’s going to be amazing.

They both are.

autism & changing the world

When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.

It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.

We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.

The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.

I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.

I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.

I want people to know that his favorite color is red. He has never told me this, I just know.

I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.

You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.

Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.

I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.

This is where we begin to try and change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.

We are so thankful that you are here with us!

The TikTok Autism Challenge – Parents: We Can Do Better

Bullies are bored. 

In the recent “Autism Challenge” videos on TikTok, users are shown mocking people with disabilities, specifically using sounds and gestures to mimic those with autism. These people are making fun of kids like my six-year-old son, and I am not okay with it.

What is funny about someone struggling to get their basic wants, needs and feelings across? Someone who cannot say when their stomach hurts, or that they feel hungry, tired, or sad?

ASD longsleeves

The people shown in these disgusting “Autism Challenge” videos take simple things like communication for granted. They are at home making videos about how people like my son move, jump, flap, bounce and dance to express themselves. We are supposed to laugh and be entertained? Well, we are not.

And let me tell you, we are not bored.

We are struggling. The safety of routine in my boy’s world was ripped away by quarantine, something we have found impossible to explain to him via visuals or a social story.

We are here, listening to the piercing screaming, working on food therapy, language development, self-care, co-regulation, and self-calming skills.  We continue to work on safety in our home with hopes to get back to working on safety out in the community soon.

writing work 2

We are here, painfully watching a six-year-old battle anxiety.  We are his calm in the storm of aggression, self-injury, and fear.

This kid is not bored.

He puts in work, all day, every day. He is resilient. He is tough. He is smart, curious, brave, gentle, kind and he understands much more than he can say. He has more heart than these mindless TikTok “Autism Challengers” probably ever will.  

new haircut

Thankfully, for now, these videos break my heart, not his. 

It completely devasts me that he will eventually cross paths with ignorant people like this.

We need to do better.

I am talking to my fellow parents. The most appalling part of this video challenge was the parent’s involvement. Some were behind the camera and some were even participating in the mockery.

We need to teach our children that their words and actions carry weight. They affect people, they can hurt people.

We need to show our children how to stand up and use their voice when they see people mistreated.

Inaction is easy. When we advocate together, change will happen. 

born rad

 

 

Change the World

IMG_3478

When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.

It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.

We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.

The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.

I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.

I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.

I want people to know that his favorite color is red. He has never told me this, I just know.

I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.

You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.

Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.

I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.

This is where we begin to change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.

We are so thankful that you are here with us!

family

On World Autism Awareness Day our incredible friends and family came together (while apart) to support our boy by showing us their BLUE for Light It Up Blue, a worldwide autism awareness event.  This video will make us smile forever. So thankful for all of the amazing people on this journey with us!

Click on image below to view the video!

Conversations with a 4-year-old about her Brother’s Autism

advocate sis

A few months ago my 4-year-old daughter, Charlie, yelled from across the room, “Mommy, look!”

Her older brother, who doesn’t tend to pay her much attention, was hugging her.

She said, “Does this mean he loves me now?”

My heart broke.

Confession: I am a bit of a hypocrite. I advocate for autism awareness and everyone talking to their children about autism and I really hadn’t done it myself with my neurotypical child. We talk about differences and kindness and why everyone we meet is special, but we hadn’t had the “your brother has autism” conversation yet.

Part of me didn’t want to point out his differences to her. She had known and loved him just as he is for her whole life. Heck, she’s been advocating for him since she learned how to speak. I often overhear her saying things like “that hurts his ears” or “he can’t do that” to caregivers and friends.

At the Christmas tree farm this past winter, she overheard me telling my husband about the onlookers when I struggled to calm her big brother during a meltdown. Over the years, my patience has grown in these public meltdown situations, but those burning stares, that part hasn’t gotten any easier.

“I don’t like people looking at he,” she said. Her love for him is so immense. She’s always looked up to him, and somewhere along the line she started looking out for him.

hugs

This was probably around the time I felt like I was raising twins. I remember jokingly saying that several times, usually to address the elephant in the room that was our son’s developmental delays.

Two kids in diapers followed by two little potty-trainers. Both with similar interests and level of attention needed. We were in uncharted territory for years. Including when she slowly surpassed him in some areas. Nothing can prepare you for that.

The twin thing wasn’t funny anymore.

She watched me try to explain something to her brother one day and interrupted with “He no understand you because he’s Wilson.”

Comments like that chipped away at my heart. I knew I had some explaining to do. But I also wanted her to always look at him with that same unconditional adoration she always has. I struggled with telling her something that I knew would be very hard for her to understand versus her just knowing him with her heart like she always had.

So, I waited. I waited for what to say and when and why.

She comes along to drop him off at his special school every day, and sees all his peers, all with autism like her brother. Some look and behave similarly to her brother and some are very different or much older. She sees flapping and hopping and hears humming, moaning, and loud shrieks of joy or stress.

Leaving the school one day, she had a question about one of his older schoolmates she saw screaming that morning.

I told her about how special her brother’s school was, and that all the students there have something called autism. That sometimes her brother screams too because he can’t remember what words to say instead. “They have very special teachers there to help him learn and stay calm,” I explained.

We talked about her book, When Charley Met Emma, about a girl whose body looks different than hers, and she uses a wheelchair. I told her that although you can’t really see how Wilson is different, he is different in his mind and the way he thinks, learns, listens and says things. How he and all his friends do special things to keep their bodies calm, like humming, jumping or self-talking.

“Why does he have optimum? He has it because he not talk?” she asked.

“He has it because everyone is so different, and that is a great thing!” I said. “Just like how you get to wear your pretty glasses, lucky girl.”

She thought for a few moments. “I scream and cry too because I have a hard time, am I going to have optimum?”

“We all do sometimes, sweet girl. We are all so much the same, and our differences make us so special. Do you have any more questions about Wilson’s autism?”

“No, I just don’t want to get optimum.”

“You won’t, sweet girl.”

advocate sis.2