Tag Archives: awareness

Listen With Me

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I want so much for this boy, above all, to just be understood.

I don’t care if he finds his voice through a device, or a drawing, I just want him to be heard.

A boy who was built differently than most.

Whose words get lost while intention and thoughts remain.

One who fights daily to just be calm in his body and peaceful in his mind.

His favorite color is red, though he’s never once told me this. I just know.

I also know that he’ll tolerate wearing blue, but only on some days.

Sometimes the world is too much for a boy who feels everything.

So, we’ll have to change the world.

He listens, even when he doesn’t respond.

He knows, even though he may not say.

I want his laugh to be shared and his efforts to be acknowledged.

This boy who jumps and jumps to share the pure joy radiating through his body.

I want people to see that.

The jumping and the joy.

The resilience.

The blue shoes.

Being his mom means listening to a million things that are not said. Or trying to.

I am trying to listen.

Please, try to listen with me.

awareness + acceptance

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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.

I share this boy with you

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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

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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.

Autism & Progress & a Proud Mom

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Proud mom moment.  Wilson hasn’t had his hair cut outside of our home in more than six years.  The last hair salon we attempted with him was when he was about two years old, and he was screaming so much before he even got into the chair that the stylist said she couldn’t work with him.  So, we left, and started a haircutting program with his therapy center that lasted about four years.  I’ve continued to cut his hair at home, and while he doesn’t necessarily like it, he has improved greatly and will tolerate it.

Last week, while I was getting my hair done, I asked my stylist if she would be willing to attempt to cut his hair at her salon.  I honestly sat there thinking about it for an hour or so before I asked her.  Deciding when and how to attempt things like this is tricky.  I don’t mean to be pessimistic, but we have been there and done that and I was sweating at the thought of attempting it again. I pictured the screaming and the other clients staring, and the headbanging, and the hand swatting. And thought maybe continuing with the mediocre mom-cuts was good enough.

Her salon is small, quiet, and I had a feeling he just might like it there.  She was very happy to give it a try and we agreed that if it didn’t work out, we wouldn’t push it.

I talked with Wilson about the salon over the weekend. I told him about the cool plants he’ll see there, the big mirror, and the nice lady named Sarah that was going to cut his hair this time. He said “no.”  Later we talked more and landed on him getting to watch his dad’s iPad after his haircut. Sunday night and throughout yesterday, he calmy repeated his schedule, including the haircut.

He did AMAZING.  He stayed calm, let her use scissors (hadn’t used those in six years either!), and was so excited to feed the ducks at the lake afterwards.

Proud is really an understatement. As much as I want to erase some of our tough experiences from memory, they sure make me grateful for how far we have come.

Also, there are really good people out there. Find the courage to ask, it’ll be worth it.

The TikTok Autism Challenge – Parents: We Can Do Better

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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

 

 

Autism on Paper

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Seeing it on paper has been one of the more difficult parts of this autism journey.

The first developmental pediatrician we took our son to gave us an “Active Problem List” that was a mile long:

Global Developmental Delay

Mixed Expressive/Receptive Language Disorder

Childhood Apraxia of Speech

Impaired Social Interaction

Hyperactive Behavior

Anxiety

Toilet Training Resistance

Sensory Processing Difficulty

He was three years old. I didn’t know where to start but I knew we could work on all of it.

Autism Spectrum Disorder

The first time I saw his autism diagnosis on a piece of paper, I sobbed uncontrollably while sitting at a conference table, mostly full of strangers.  You hear about mother’s intuition and “gut feelings” and people will ask you if you saw this coming.  None of that made a difference.

That experience is something I have struggled to put into words for years. Fear, sadness, grief… these don’t even come close to encompassing it. Truthfully, I don’t even want to put it into words.

This was only the beginning. Over the years, evaluators, doctors, therapists, while all well-intentioned, are constantly rating, judging, and assessing my child.  Some things feel wrong, “they don’t know him” we think to ourselves. Some sting, they cut my breath short or keep me up at night. The end-product never feeling like a summation of my boy.

On a few occasions now, I have had to fill out a 30+ page questionnaire covering everything from “Can he use a spoon without spilling?” to “Does he want to kill himself?”

These words get tucked away in file cabinets everywhere: school, the county, therapy, a few pediatrician’s offices. But the weight of them never leaves us.

Anxiety

Self-injurious Behaviors

Aggression

We continue to carry them.

How do you ever get used to these words?  For their sting to become dull?

Medical Incident Reports

Property destruction

Elopement

For special needs parents, the line between acceptance and determination is a blurry one.  We maintain an ironclad grip on these heavy words, these “problem lists”, until we decide in which category they are going to land.

Over time, we loosen our grip and let some words go.

Public school

Organized sports

Music lessons

Sometimes, when we let go, we make room for something better to come along.  Adaptive sports, music therapy, and amazing interventionists who help your child practice sitting in a restaurant and safety in the community.

The heaviest ones, we continue to carry those. We make it our mission to send those words into the fire one day, for them to cease to exist in our children’s lives.

Anxiety

Self-injurious Behaviors

Aggression

We, along with our children, will continue to carry the weight.

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

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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

Supporting Kids with Autism and Their Families

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BW autism

So often we avoid talking about the tough stuff. When someone is going through a difficult or emotional time, many people respond by backing away. They fear offending the person or getting it wrong or not having all the best advice or ability to “fix” the situation. I am guilty of this, even with my closest friends and family.

When it comes to autism, I want to talk about it.

The Centers for Disease Control and Prevention (CDC) says that autism now affects 1 in 54 children in the US. Including this handsome little man right here.

This number used to be 1 in a 1,000.

What does this mean? I am not here to start a debate about vaccinations, or epidemics or finding cures.

What this means is that you are VERY likely to cross paths with someone on the spectrum. This person might be in your very own family or circle of friends, at your children’s school, the neighborhood playground, or the grocery store.

Autism will touch your life.

I want to talk about some ways to support kids with autism and their families.

  • Lead by example. Your children see the way you are around people who are different.
  • Talk with your kids about autism. When they see a child behaving in a unique manner, draw on the similarities they share with your child. “Look, that boy loves the swings, too!” Your child will find their new buddy to be no less happy, fun, loving, adventurous and interesting as their other friends.
  • If a child tries to interact with my boy, he may not respond. He likely didn’t understand the question, or doesn’t realize someone is talking to him. He isn’t intentionally ignoring, and would never want to hurt anyone or make them sad.
  • This kind of social interaction is INVALUABLE for him to practice. Children should be encouraged to ask again, try again later, or “give” him the words to say. “Come get me!” “Let’s go!”
  • If a child is upset, give them some space. They are likely overwhelmed and/or sensory overloaded so too many words can heighten the situation. Offer a hug, or try counting down on your fingers.
  • Some kids on spectrum will repeat themselves over and over again. Children can respond gently with “I need a break” or “not right now”.
  • Remember that these kids can hear, feel and understand so much, even if they don’t say as much.
  • Don’t be afraid to ask questions (both parents and kids!) with the exception of “is your child high-functioning?” Who wants to go around with a low-functioning label? Don’t be afraid if your child asks forward and bold questions! Even if it creates an awkward moment, it’s the perfect moment to spread awareness and I love it.

And to support the autism moms and dads out there, especially ones with newly diagnosed kids, remember that you don’t have to fix anything. Just listen.

Autism mom and writer, Diane Dokko Kim, said it so well: “We will do the talking. There is so much in our heart that’s conflicted. We need a safe place to unpack it. You know what I really need from my friends? Just come and bring the emotional barf bag, I will fill it.”

When we sit in pain or struggle to unpack emotions, sometimes we just need a friend to sit with us.

Thank you for continuing to learn about autism, now I want you to talk about it too! Start a conversation, with your kids, your friend, your neighbor, your bartender, etc.

You are helping us spread kindness, inclusion, connection, understanding, patience, and so much love.

This was originally posted for #autismawarenessmonth in April 2019.