You Can Help Me Teach Them

“People are staring at him because they think he is weird.”

My seven-year-old daughter has always loved and accepted her big brother, who is nine years old and autistic, exactly for who he is: a fun, loving, and unique human who just happens to move through this world a little differently than most.

We had the kind of evening where her brother garnered himself a lot of attention from onlookers. There’s something about a new place, increased demands, sensory overload, and feeling misunderstood that will cause his “indoor voice” to disappear real fast, and dysregulation to set in.

No one get’s to choose where and when this will happen, whether it be on aisle seven at the grocery store or a crowded lobby at sister’s dance class studio.

“They don’t think he is weird,” I assured her. “They just haven’t seen a lot of people act or speak the way he does before, so they are curious.”

Sometimes I think my skin is thick. That I’ve got this advocating and acceptance thing down. And that the stares don’t bother me. But if I am honest, that is not all the way true. I remind myself that the stares do not bother him one bit, and that is what matters.

And sometimes, conversations with a sweet seven-year-old sting a little, deep in my mama heart. The words and feelings echo and linger. Like the time she asked if her brother would have autism forever, or if he loved her.

And sometimes the stares are just a simple and exhausting reminder that we have so much work to do, to increase autism awareness and acceptance in this world. To make it easier for our son, and so many others, to navigate their way through it and be met with grace and patience along the way.

“It’s because he has autism, but no one knows what autism is. That’s why they think he’s weird,” she said.

“That’s why we teach them about autism, sweetie. You can help me teach them.”

A Little Advocate

This is Charlie.

When her big brother, who is eight years old and autistic, lost his first tooth, she asked us to write a letter to the tooth fairy because she knew her brother would love a toy more than money.  She made sure to check his pillow the next morning and show him what had arrived.

She has taken on the role of a special sister the most beautiful way. I don’t know how a six-year-old can accept such big things? Like how sometimes her wants and needs just must come second. Or third. 

She doesn’t know about all the things we’ve had to miss out on because we were not able to take her brother, so we all stayed home.  But my heart says that she wouldn’t mind. She always wants him with her anyway.

This little light came into our lives when we needed her most. When her big brother needed her, too.

She quickly took on the role of looking out for her brother, telling people when he can’t do things or when sounds are hurting his ears. Or when he just needs a break to sing himself a song.

As you can imagine, being relied on through toddlerhood is a lot. It continues to be a lot, but she navigates everything that comes her way with more grace and patience than I have most days.

Her brother doesn’t like it when she eats cheerios because of the smell. He cannot tolerate some of her favorite shows or toys because of the sounds they make.

She has learned to bring him his headphones when he is overwhelmed, and rush through her morning cup of cereal. These are things I wish she didn’t have to do.

The majority of her first few years were spent in the car, shuffling her brother around to different specialists on his long journey to an autism diagnosis.

Then it was her turn for the doctors, specialists, and more waiting rooms.  Her severe allergic reactions, ambulance rides, Epinephrin pens, glasses, patching, asthma… she continues to adapt. Nothing slows her down.

She is happy, independent, curious, and I love watching her learn and grow more each day.  She asks questions (so many questions!), watches, listens, and takes it all in.

She encourages her brother through difficult food therapy and haircutting programs. “It’s okay, Wilson.” She whispers in the sweetest voice on earth. She takes his hand to show him when he doesn’t seem to listen.

She tells others matter-of-factly that her brother has autism.  She looks up to him, admires him, and is so proud of him.

When she empties her piggy bank to get a toy at the store, she asks to pick one for him, too. How is so much kindness and love packed into that sweet little body?

She is not an autism expert, none of us are. She is learning to be a thoughtful, kind human who knows differences are good, beautiful, and something to be proud of.

We’re so proud of her and the amazing person she is becoming.

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

For Wilson’s Tribe

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and the mother of an autistic child, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help.  A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind, and generous humans who constantly offer their support and lift this family up.

Our friends and family and friends who are family, you open your homes to our curious boy to redecorate, climb on furniture, your laps, and shoulders, and oblige him in his relentless requests to be chased in circles. You continually say “hi” and attempt to engage with our little man, even when you know you will likely not hear a response. Someday, he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us. 

His teachers, behavior interventionists, doctors, therapists, and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.  You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

His little buddies, you have the most innocent, loving hearts.  You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable.  I know my words don’t resonate with everyone, but they might with you.  Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

All our friends, family, and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story, you encourage, support, and lift us. When you share our story, you are helping us achieve inclusion and acceptance.

Charlie, aka Sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also unconditionally love, include, and protect him. You aren’t afraid to get right up in his face, so he sees you, so he hears you. He feels how much you love him; I promise you.

Wilson’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.  You keep him happy and safe, which isn’t easy but is our greatest purpose.  You know him and you love him so well. You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to.  You’ve helped me find patience, and still, I pray for more every single night. You have forced me into a vulnerability like I have never known and shown me all the amazingness that follows such a leap. 

You’ve shown us how hard your world can be. Through frustration, pain, confusion, and sleep deprivation, you are still so happy in your soul. You’ve shown me this is not only possible, but also just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

a little advocate

This is Charlie.

When her big brother, who is seven years old and autistic, lost his first tooth, she asked us to write a letter to the tooth fairy because she knew her brother would love a toy more than money.  She made sure to check his pillow the next morning and show him what had arrived.

She has taken on the role of a special sister the most beautiful way. I don’t know how a five-year-old can accept such big things? Like how sometimes her wants and needs just must come second. Or third. 

She doesn’t know about all the things we’ve had to miss out on because we were not able to take her brother, so we all stayed home.  But my heart says that she wouldn’t mind. She always wants him with her anyway.

This little light came into our lives when we needed her most. When her big brother needed her, too.

She quickly took on the role of looking out for her brother, telling people when he can’t do things or when sounds are hurting his ears. Or when he just needs a break to sing himself a song.

As you can imagine, being relied on through toddlerhood is a lot. It continues to be a lot, but she navigates everything that comes her way with more grace and patience than I have most days.

Her brother doesn’t like it when she eats cheerios because of the smell. He cannot tolerate some of her favorite shows or toys because of the sound.

She has learned to bring him his headphones when he is overwhelmed, and rush through her morning cup of cereal. These are things I wish she didn’t have to do.

The majority of her first few years were spent in the car, shuffling her brother around to different specialists on his long journey to an autism diagnosis.

Then it was her turn for the doctors, specialists, and more waiting rooms.  Her severe allergic reactions, ambulance rides, Epinephrin pens, glasses, patching, asthma… she continues to adapt. Nothing slows her down.

She is happy, independent, curious, and I love watching her learn and grow more each day.  She asks questions (so many questions!), watches, listens, and takes it all in.

She encourages her brother through difficult food therapy and haircutting programs. “It’s okay, Wilson.” She whispers in the sweetest voice on earth. She takes his hand to show him when he doesn’t seem to listen.

She tells others matter-of-factly that her brother has autism.  She looks up to him, admires him, and is so proud of him.

When she empties her piggy bank to get a toy at the store, she asks to pick one for him, too. How is so much kindness and love packed into that sweet little body?

She is not an autism expert, none of us are. She is learning to be a thoughtful, kind human who knows differences are good, beautiful, and something to be proud of.

We’re so proud of her and the amazing person she is becoming.

the weight of hope & autism

“Will Wilson still have autism when he’s all grown up?”  My little girl asked, continually curious and looking out for her big brother.

“Yes, he will,” I told her with a smile.

<enter her look of pure shock>

“But! How will get married? His girlfriend won’t understand him!”

Sometimes these conversations are hard.  

They can be beautiful moments of learning about people and their differences and all the reasons we love and celebrate uniqueness.

They can also knock the wind right from your lungs when you least expect it, while in line at the grocery store, or in the stillness of a bedtime routine.   

When your child is born, you know you’d stand in front of a bullet or a train for them. What you don’t realize is that it will likely never be that simple.

Hope in the world of parenting and autism can be heavy. 

It’s like invisible, antiquated body armor you pack on each day. You always feel the weight but know you need to carry it.

There are days when it’s just easier to set it down, to rest. And that’s ok.

Sometimes you need innocent conversations with a five-year-old to remind you to pick up your hope and keep going. That the weight is worth it. 

“Of course, he can get married! He is learning more and more every single day, just like you are, sweet girl. He just learns in a different way.”

I’m carrying hope with love and confidence today. You can bet if I ever set it down, it will not be for long.  

“Mom, Why Does Wilson Have Autism?”

“Mom… why does Wilson have autism?”

“Because he was made that way. Just like you were made to be just the way you are.”

Oh, how I have dreaded this moment in the past. I have asked myself that very question a million times, only to come up with as many different answers. Like many things in our autism world, there is not one straight answer, leaving you with the same frustration and confusion you started with, and more questions.

What did I do wrong?

Did I take enough of those prenatal vitamins?

Maintain the right diet during pregnancy?

Was it his vaccination schedule?

What on earth is a refrigerator mother?

Or maybe this path was meant to be his long before he arrived here on this earth.

People will tell you that everything happens for a reason. I don’t know if autism was meant to be or not but the one thing I do know, is that these two were meant for one another.

She has messed with this regimented little boy in the best possible way since she arrived. And he has been fascinated since he laid eyes on her.

As they get older, their differences have become more apparent but so is how much they are learning from each other.

She is so proud of him for every new accomplishment, while also slowly registering that life really isn’t always fair.  She knows which buttons to push to set him off, but will also be the first one to rush to sing to him when he needs comfort.

“Give a squeeze,

Nice and slow,

Take a deep breath…

…And let it go.”

When the fog of frustration clears, I see beautiful “reasons” all around.  Wilson is a constant reminder to slow down and appreciate the simplest of things.  He could study leaves for hours and lays down to examine ants slowly making their way across the driveway.  He studies his reflection with such curiosity and wonderment, and he will study you the same if you let him in.

And is there a better sound than children laughing? Turns out, you do not need words for that.

I have stopped constantly wrestling with the paradox that is this world of autism, insisting it had to be one way or another. Difficult or easy, high or low, complicated or pure and simple. Perhaps it will be, and always has been, both.

Life can be everything. Together, these two are everything.

**Click on image below for a sweet video. That Dumbo was Wilson’s favorite thing in life for his first four years. He brought it everywhere. He loved to rub it’s nose on his forehead when he was tired or needed calming.  He shared that feeling with his new sister and it was such a tender moment.

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

Birthdays and Autism

 

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My little ONE-year-old

As a parent to a toddler on the autism spectrum, birthdays were hard. Seeing my son around his peers was a very loud reminder of just how old he was and where he was developmentally.

In those pre-autism-diagnosis days, we attempted all the traditional birthday festivities that a typical child would enjoy and our son wanted nothing to do with any of it. We couldn’t get him to open a present, listen to the “Happy Birthday” song or even look at his cake, let alone taste it. He ignored all of our friends and family and their birthday well-wishes.

My friends would tell sweet stories about words their children were saying and I would completely miss the cuteness and celebration of it all. I was stuck on the fact that those children were talking and my boy wasn’t.

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Wilson’s First Birthday

I was jealous and then I felt guilt and anger about that jealousy. So many ugly emotions.

One year we really didn’t want to do anything to celebrate his birthday. It’s so frustrating when something that is supposed to be fun ends up overwhelming and upsetting him.

Parents: if you can relate to this, I want to remind you to hang in there.

Over time, our son has shown us that birthdays should not be hard or sad. Or remind us of his delays. He has shown us how to best celebrate him, and that it’s OK if that doesn’t look “typical”.

This past year, our little six-year-old had the best birthday celebration to date. Friends brought his favorite things: old keys, wooden treasure chests and tons of other pirate paraphernalia.

He was so happy.

He still didn’t eat the cake, but he did request the birthday song multiple times and all of our friends and family indulged him in several rounds of the tune. The look on his face while we sang to him was better than the byproduct of any cookie-cutter birthday party I had imagined in years past.

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This is SIX!

Attending his peers’ birthday celebrations was and remains a whole other ball game. Our little guy doesn’t understand this it isn’t his day. He believes candles should be blown out and presents should be opened, simple as that.

We’re navigating these events more smoothly with visual schedules and a lot of planning ahead. This usually means bringing his own candle along so he can blow it out and staying for a brief visit before he gets overwhelmed. Knowing what is ahead is huge – we don’t want to be bothersome to the party-planners but most often need to know the details for the sake of EVERY invitee’s enjoyment.

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Great Grandpa’s Birthday

We’ve learned to not only try new things, but to revisit old tactics that may have not worked the first time around. Keep trying all the things: silly, practical, innovative and traditional.

I can’t tell you how many times things have gone differently than I expected them to. These moments often times felt like a failure. Now I know they were just stepping stones to get us where we need to be. It’s all worth a try to make our boy feel strong, calm, and happy.

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Progress will happen. It just might look different than you had imagined. Be careful not to miss it.

Your child will grow and change. And you will too.

You will learn how to best celebrate them in a way that is so incredibly special to them. It doesn’t matter if they aren’t interested in the latest Marvel characters, sports teams or Disney princesses.

I will celebrate my little pirate and continue to round up old keys for him forever if that is what endlessly fascinates him and makes him happy.

Now, we celebrate BIG. No more comparisons. Our boy is in a league of his own, right where he belongs.

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