Always Presume Competence

-Nonspeaking does not mean a person cannot communicate, understand you, or that they don’t have feelings.

-Please drop labels like high/low functioning. Would you want to be talked about that way? Instead, you can say, “Tell me more about your child.”

– If a person is not making eye contact, or moving their body in a unique way, do not assume that they are not listening. In fact, that might be HOW they are able to focus on what you are saying. 

This was the first time I saw Wilson write his name. At the time, I didn’t know he could do it. In fact, I didn’t think he could do it.

I can’t believe how many times I have underestimated this boy.

If you think he looks proud, you should have seen me.

this boy ✨

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.

April is Autism Awareness Month and while we love any opportunity to celebrate this amazing boy, we advocate for awareness all year long by sharing his challenges, progress, joy, and everything in between on this blog. We do this because it isn’t enough for people to just know that autistic people exist.  We 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.  

We 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 paradox in his 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.

autism & awareness

Oh April, Autism Awareness Month.

I have mixed feelings about you.

You see, I am never unaware of autism.

When I answer the same questions 1,980,674 a day from my little boy with autism, it’s impossible to be unaware.

Or when I help him go over his schedule 630,238 times a day. My husband looks at me and says, “It’s so bad right now.” He means the OCD behaviors. That is just a bonus thing to be aware of with an autism diagnosis. Anxiety is right up there, too.

Yes, then I am very aware.

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

One is a person first, after all, he is a 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 autistic adults 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 talk about autism to spread awareness.

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 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 see, people would understand that sensory processing is so different for everyone. 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 and patient with those who are different.

Yes, that world would be so nice.

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.  

the big stuff

There were years where I felt like this boy could hardly see me.  Our days consisted of struggling to communicate, trying to help him stay calm and regulated, and fighting for a glimpse into his world.

I waited so long to hear him call me “mom.”

Now, every night, he doesn’t go to bed without giving me a hug and a “goodnight, mom.”  If I’m not nearby, he comes to find me.

He’s also been using manners like “please” and “thank you”—completely unprompted and enthusiastically.

Sometimes we get too caught up in the evaluations, assessments, IEP meetings, and desensitization programs that we don’t take time to recognize, appreciate, and truly celebrate the BIG stuff.

Sometimes progress is painfully slow.

But, nonetheless, it is progress.

Celebrate it. It’s huge.

The progress in your life will never look the same as someone else’s, so don’t miss what is right in front of you.

progress + happiness

Wilson has worked so hard on tolerating haircuts for YEARS. This has been a series of small, very intentional and consistent baby steps. For reference, it began with him tolerating the buzzer to be in the same room as him. Then it moved closer. Then weeks later, it was about tolerating the buzzer to be plugged into an outlet in the room with him.

You can imagine, the actual haircutting steps were even smaller, helping him to very slowly work through his sensitivities and anxiety around the entire process.

Years ago, I would have never believed that one day he would be laughing and singing through a haircut. He has come so far!

Proud of this boy.

Sweet video via link below:

haircut progress with our happy boy!

this brave boy

Who do you advocate for?

Autism moms came together by using their voices this month to demand justice for a child with autism who was abused at his school by a teaching assistant. 

These stories are becoming too much. Children with disabilities are all too often being kicked off airplanes, out of restaurants or church, abused at school or in their own homes.  Each new story stings as much as the last, like thousands of tiny papercuts while watching the evening news.

With each one, I glance at my bouncy, blue-eyed, happy, innocent boy. How could anyone ever treat a human that way? 

With each story, I pull him in a little closer. Silently renewing my vow to protect him from the evils of this world.  

The school district failed to hold this abuser accountable, but our voices were heard. The teaching assistant has resigned.

When people come together, change will happen.

The incident prompted one autism mom, a documentary filmmaker, to reach out to us bloggers to submit a photo of who we advocate for in our lives and communities. You can watch the video via the link below.

I am truly amazed by the power of community.

I also believe that ONE voice can make a difference.

Will you tell us who you advocate for? It can be anyone; a child, a student, a relative, or yourself! Tell us one thing that you wish people would know about this person. Post it in the comments below.

I’ll start. This brave boy. I want people to know that people with autism understand so much more than they may be able to express. They are human, they feel deeply. 

So be kind, always.

link to video (you may have to copy and paste it to your browser):

https://fb.watch/3PEtKfP9gM/

my son has autism & he is wired wonderfully

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“He’s just wired differently.”

We heard this phrase often in those first months after Wilson’s autism diagnosis.  We were trying to wrap our heads around this world of autism in which our son was living.  It’s a fairly simple phrase, which was almost refreshing given the complexities of this disorder we wanted so badly to understand. We’ve since learned that for us, autism is in the moment. It’s unpredictable.  Some days it is two steps forward, and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time.  It’s taking the long way. Routine and Repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.

Wilson is a typical boy who loves being tickled and chased. He’s into anything that involves jumping, bouncing and spinning. The faster the better. He loves music, building, blowing out birthday candles (it doesn’t matter whose birthday it is), and dressing like his daddy.  He loves anything and everything to do with pirates, trains and keys.

What makes him so different? This is where the wonderful comes in…

He is absolutely enamored with his shadow and reflection. Sometimes his mind and senses are so overloaded that he quite simply needs to be wrapped up tightly in a hug.

He says, “You’re welcome!” whenever someone on the television says “thank you.”

Scripting (reciting lines from movies, books, songs etc.) was Wilson’s first major vehicle for speaking. He could recite scenes from his favorite cartoon and sing songs before he could say “mama”.

Eventually, Wilson learned to use some of those phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say “Once upon a time…” Every time he finishes in the bathroom he’ll say “Fantastic! All done!” with his arms in the air.

Much of his speech started as echolalia (repeating what he hears, verbatim.) When I would say, “bye, Wilson” he would reply, “bye, Wilson.” Echolalia is a common way for toddlers to learn and practice language, however, children with autism can have echolalia much further into childhood.  There were times it felt as though he would just repeat me forever.

While tucking Wilson into bed one night, I said “I love you” and he replied, “I love you, mommy.” Mommy. He added that all on his own. He wasn’t just repeating me anymore, he was beginning to express his own thoughts and responses.

That one single word fed my soul so much hope that night.  It seems so simple, but for him, it was a remarkable step.  I remember every single moment of that exchange, and it was nothing short of wonderful.

courage + progress

This boy just NAILED his blood draw.  If you have followed along for a while, you know this has been SO TRAUMATIC for all involved in the past.   So much so that I was able to avoid this situation for a few years for him.

This time, we had a phlebotomist come to our home. She was some kind of heaven-sent angel; whose grandson happens to also be on the autism spectrum.  She calmly talked Wilson through everything, even after I told her about his limited verbal skills. She continued to talk, letting him know everything she was doing and asking him questions about his life. He didn’t respond or understand most of what she was saying, but I know he felt her calm, kind presence.

The real MVPs today were his incredible teachers, who practiced this process with him for a few weeks. They made visuals, created incentives, and did mock-blood draws with details all the way down to putting on the rubber gloves and bandaging him up afterwards.  They made videos to show us so that we could do the entire process at home (remember, practicing across different environments with different people!)

I don’t know who needs to hear this, but things CAN get better. You must try, and then try again. Even if it’s weeks, months, or even years later. Just don’t give up.

I’m so proud of him. I’m BEYOND grateful for the village, the tribe, the TEAM this kid has at his back. And the kind angels he finds along the way.

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

~ Maya Angelou

I wish I could feel things the way you do

I wish I could feel things the way you do, my sweet boy.

I want to understand.

I didn’t know sound could physically, deeply hurt until you showed me.

I see you fold your precious ears in on themselves, an attempt to mute the overwhelming world.  That doesn’t usually work though. So, you quietly, nervously, moan. This slowly grows in intensity and frequency until your shrieking blocks out the unwanted sound or it’s removed. Whichever comes first.

I want to explain to others how you feel inside during these moments.  The way your senses hide and seek all the input from the world around you so differently than most of ours do. 

Others should know that anxiety and sensory processing difficulties ride shotgun with your autism diagnosis. Together, as a team, they run interference and wreak havoc on your peace. Every hour of every day.  

I could tell them that the seemingly small, simplest of sounds are like the proverbial “nails on a chalkboard” multiplied to the nth degree to you. But that probably sounds silly to you. I know you feel so much more than my words can describe. 

I want them to know in these moments you need space.  To let you moan and shriek. That you can’t hear anything else once you feel this way.

You’re practicing wearing your headphones and we’re so proud of you. But I know this only dulls the sound and you need it to cease to exist in this world before you feel calm in your heart again.

I remember when you were little, we took the batteries out of so many toys, puzzles, and games because they were so distressing.  The things we thought you would love made you cower in my lap at times.

I know that sometimes, even familiar sounds or music that make you happy tend to also overwhelm you so much so that you need to block them out just like the other, unwanted ones. I’m sorry it took me some time to understand this.

I see the way you are constantly ready to protect yourself.  Like when we visit the horses. They are so big and unpredictable, aren’t they? In those moments of silence, you are ready.

Every day you work on tolerating more. You do this for your sister, your dad, and I. You practice because you have the most curious heart and you want to explore this big, unpredictable world, even though it’s so overwhelming.

You’re so brave.

I’ll never feel the way you do, my boy. But I’ll never stop trying.