To the Mom of a Child with a Disability this Mother’s Day

I am thinking about you today.

I want you to know that everything you do matters.

When you crawl into bed at night, aching from your temples to your toes, know that you have done enough.  There may have been no progress made with toileting, feeding therapy or communication today and that is okay.

Your child is safe and so loved.

The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating.

The research, the meltdowns, the battles over chicken nugget brands and clothing choices, all can withdraw every ounce of patience from your soul.

The smeared feces, the eloping, the pica and other behaviors you watched your friend’s toddlers outgrow.  Years later, they remain in your child.

Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.

You need to know that.

Your child may not be able to express this, some of you may have never even heard your child call you “Mom”.

But they know you are Mom.

Your child is so grateful for all that you do and would be lost without you. Just as you would be lost without your sweet child.

I want you to know that you are not alone.

When your patience has been depleted.

When you’ve cried behind your sunglasses at a park as you watched your child’s differences come to light. 

The loneliness you have felt from the long days spent with a child unable to read your emotions.

The difficult medical and educational decisions you struggle to make.

Know that there are so many of us with you.

We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

I want you to find hope.

Today let’s bask in achievements and forget about regressions.

Even if only for one day.

Let your hope be stronger than your fears.  With so many unknowns in the future, know that it’s going to get better. 

I know this because we will grow stronger.

We will continue to learn, to advocate, to protect and make certain our children know their worth and just how very much they are loved. 

I am so thankful for this sisterhood of amazing mothers today and every day.

Have a very Happy Mother’s Day.

remember my boy

Explaining autism is hard.  Understanding the complexities inside of my sweet boy can feel like trying to catch and examine the wind.

If there is one piece of autism awareness I can leave you with this month, this would be it:

The next time you are stuck at the grocery store, irritated with the man at the front of the growing line because he keeps chatting with the clerk, think of my boy.

The man might be verbally ruminating about new soda flavors he saw on tv or explaining his frustration that the store is out of the only bread he eats. How it is very important because he eats this bread for every meal in his day.

He may also bring up the triangle-shaped crackers he saw on aisle seven. For him, this is so silly because crackers really should be square.

He’ll fumble with his money.  Something that seems so simple for many but for him, this has taken intentional practice.  He carefully counts and counts again.

He’ll often adjust his big, bulky headphones. At first, you probably thought he was listening to music, but they are there to block out the unwanted sounds, squeaky grocery carts, fluorescent lighting, beeping registers, that kind of distracting thing.

When he moans, chats to himself, and waves his arms, he is growing more uncomfortable and overwhelmed in this busy place. Moving his body and voice this way helps him stay calm.

Remember by boy.

Because one day, this will be him.  While I don’t know exactly how he will behave, I do know he will be processing a lot just to be there.

I know he will have worked hard for years to be in that line alone, and I will be so proud of him for this.

I’ve seen him work harder than most for his entire life just to participate in this world. This work began long before his autism diagnosis at three years old or before any of the accompanying anxiety, sensory-processing disorder, and obsessive-compulsive behaviors were ever put down on paper and filed away somewhere.

So please, remember this blue-eyed boy who loves pirates, music, and square crackers and whose hard work began when he was a toddler.  The 1-in-54 whose brains work differently like his, they will grow up, and their hard work will remain, too.

Remember that you do not have to see the struggle for it to be there.

As his mother, I need you to be kind and patient with him. I beg that of you.

He works so hard.

autism: the beginning

“STOP FOLLOWING US, BABY! Why doesn’t he talk? He’s a BIG BABY! AHHH!!! Run!!” 

I watched as the two older boys screamed these words into my son’s face at the otherwise-empty playground.  They couldn’t understand why a kid my son’s size wouldn’t talk or pick up the clue that they didn’t want him around, even after it was screamed into his face.

My sweet boy had recently been diagnosed with autism. He had limited verbal skills and a spirit so big and bright. He laughed as the words were screamed in his face and continued to chase the boys who wanted nothing to do with him.

The boys’ mothers were deep in conversation at a table across the park. Once or twice, they called over something along the lines of “are you being nice?” and got right back to their conversation.

I can still feel the tightness in my throat as I fought with all my being to not cry. The tears poured down from behind my sunglasses. I stood there alone, praying for the mothers to notice my special boy and intervene in some way. Occasionally, I choked up a few words to try and redirect my little man to another part of the playground.

I had no words that day.  I was fragile, still processing this new world of autism and what life ahead was going to look like for my boy. And that afternoon just broke me.

This was the beginning.

Luckily, my son did not feel the pain of exclusion that day.  I know it will not be that way forever.  He understands so much more than he can say, and he feels so deeply.

Now, I would know what to say, and I wouldn’t wait on strangers to say the right thing for me. But it sure would have helped this mother’s fragile heart if those boys had learned a little about differences, kindness, and inclusion.

April is World Autism Awareness Month.  When we advocate for autism awareness, really, what we want is kindness + inclusion. That is what really matters.

Learning about and celebrating our differences and those of others can change everything.

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.

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/