Raising a Child with Autism – You Are Not Alone

During the years surrounding Wilson’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.

That Dumbo went everywhere with him back then.

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. 

I’ll tell you there is not one thing I could tell my fellow parents of children with autism about our life that would shock them. Seriously. The fears, the frustrations, the meltdowns, and all the “inappropriate” behaviors we’ve faced. They GET it.  They also get how big some of the simple, small victories truly are as well.    

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 it helps to know there are so many people here rooting for him.

Flashback to right around his diagnosis. This picture captures pretty well how it was going! Baby Charlie’s face gets me every time 🙂

autism, anxiety, and lost time

One of the most unreasonable, exhausting, and heartbreaking sides of my son’s autism is his battle with anxiety.  Sometimes anxiety falls under the ever-broadening umbrella that is Autism Spectrum Disorders, and sometimes you face anxiety as one of many comorbid diagnoses.

In our world, anxiety is the fierce sidekick to autism. It’s the root of things like self-injury, aggression, and property destruction.

It is also the thief of time.

Anxiety is the reason you will not find our family in line for a ride at Disneyland, a photo with Santa, or even a burger and fries.  No line, anywhere. Waiting is hard and waiting in unfamiliar environments is when anxiety seizes the opportunity to creep in and serve up an emotional and physical beating until my sweet boy is missing from behind those bright blue eyes.

What I would give to crawl in there too, to fend off this awful intruder for him. To remove all the pain and confusion and just leave behind the unique, beautiful wonder.

We have found some alternatives, like Sensory-Friendly Santa appointments.  You learn to adapt.  I have accepted that some places in the world are just not for us.

At least not for right now.

But I would be lying if I didn’t say that I sometimes wish we had a perfectly curated family photo at the local pumpkin patch.  We went the other day, my two kids and I, and after disrupting all the other families there with my boy’s bloodcurdling screaming (he really has found a new pitch), my attempt to carry him out looked more like a curated kidnapping was underway.

Here’s the thing: a kicking, screaming, fight-or-flight meltdown looks a lot different in a seven-year-old than it does in your typical toddler I-want-a-candy-bar scenario.

When Wilson was five, we both sat in the middle of a busy hospital lobby, sobbing. I could not move him. I had given up until a guardian angel in the form of a nurse offered to help us.

Sometimes we spend hours on meltdown and recovery over something as simple as clothing or food. These are moments, hours, and days that we will never get back.

The thief of time, you see.

These kinds of days can take it out of you in every way imaginable. You boil down the goals to giving him space and keeping him safe.  Sometimes you just want the day to end so that tomorrow can be new, and hopefully different. And just maybe the world won’t be too much for him then.

Here’s the part of our picture I want to paint very clearly: my boy is happy.  He is kind, gentle, finds joy in the simplest things and then radiates that happiness throughout the room. He is also fearless, brave and works hard every single day on regulation and communication.

A little contradictory? I know, I am confused too.

We cannot control when anxiety will show up, how long it will stay and what it will leave in its wake.

We try, but this is just one of the many unpredictable parts of this autism journey.

What we can do is continue practicing coping and regulation skills, even if sometimes that means getting out of our comfort zone, so that one day, you will see us waiting patiently in a line somewhere.  

We can also soak up the happy moments and continue to celebrate all the small victories, because really, they are all big ones to us.

never give up

There is much going on inside of this sweet boy right now.

We’ve had a rough week. One full of behaviors so unpredictable they leave you quietly planning ways to never leave the house again. The world is just too overwhelming for him sometimes.

Today is a new day though. Wilson felt calm and regulated, so I felt brave.  We ventured out to the bakery. This little man did amazing, he even kept his mask on the whole time.

Thanks to nevergiveup.org for the important reminder.  It’s always worth trying again, when the time is right.

quarantine, autism, and the chance to slow down

Sometimes this little man is so intensely focused on an object or activity, the rest of the room, the rest of the world, falls deep into the background.  He takes his time, studying pieces of this world sideways, upside down, and from every other possible angle. 

For someone who “lacks appropriate eye contact” (so they say) when he does look at you, he REALLY looks at you. He examines every wrinkle and freckle, he touches, smells, and tastes.

He might not notice a person enter a room because he is intensely focused on a tiny bird, gently perched right outside the window.  He doesn’t just see a bird. He sees feathers, shapes, unique movements, wings, eyes and so many colors. 

Or he might be distracted by the steady, piercing sound exuding from the bothersome, bright overhead lighting. 

So, when the COVID-19 pandemic and subsequent quarantine hit, you can imagine spending hours a day trying to draw this little man’s attention to a computer screen for Zoom therapy sessions was rough. 

Why did we try? Because this isn’t about falling behind in the world of ABC’s and 123’s. It is about attending and listening so that he can learn in an environment beyond 1:1. It is about co-regulation and self-regulation so that he doesn’t hurt himself. It is about word comprehension so he can use them to get his increasing needs and preferences across.

The silver lining in this dark cloud of quarantine has been the chance to slow down. To be still and learn from this curious, brave, unique boy. Watching him radiate happiness from the simple things in life that most of us are moving too quickly to appreciate.

Like the way he savors every bite of summer watermelon and dances with his shadow when the sunshine brings it out to play with him, this little human is so complex yet celebrates such simple happiness every day. 

For many of us parents of children with disabilities, the quarantine has changed everything, yet much remains the same.  The isolating road we are on has narrowed with less in-person support and interaction, yet we continue to face the same kinds of difficult medical and educational decisions that we always have.

We continue to champion for our children to have the supports and services they need to thrive, while we consciously fight to keep our hope stronger than our fears.

With so many unknowns in the future, we must believe that it’s going to get better, and that 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.  We will continue to be their voices until they have found their own.

“I’m so happy!”

        
“I’m so happy!”

This boy has said these words a lot lately. What this means to me, I must try and explain. There have been periods in his life where I never thought he would be able to say something like this. When you have a child with limited or delayed speech, you sometimes spend years coaxing out the (seemingly) simplest of words.

For me, the one that will always stand out as the longest wait was “Mom.”  I will tell you that today, when he says, “Hi, Mommy!” it still sounds just as sweet as the first time I heard it. Even on those days where he says it twenty times in five minutes (repetition, repetition, repetition!) 

There were also periods where I knew he didn’t feel happy.  Really long, rough patches. We still have our hard moments, hard days, hard weeks. Truthfully, “hard” seems like such an inadequate description. The things we are dealing with are ones I never imagined facing as a parent, and I will never grow used to, either.

This boy endures a difficult reality every single day.  The pain, confusion, and frustration he feels is immeasurable at times, especially because he cannot explain it to anyone. It breaks my heart how lonely that must feel.  

But you know what he can do? He may have a rough day, but he’ll also find moments to just sit in gratitude and appreciate his life and unabashedly proclaim his happiness whenever he feels it. “I’m so happy!” he’ll shout, completely unprompted, when a familiar song comes on in the car, or he’s snuggled up in his favorite blanket, or when he is served a huge slice of watermelon. 

This little seven-year-old practices gratitude for simple, happy moments.  So why shouldn’t we?

I don’t let myself get lost in the hard days anymore. A tough morning does not define an entire day. Even in this dumpster fire of a year, there is still so much to be happy about. Don’t get so lost in the hard that you miss the simple, beautiful moments like this one.

I’m so happy, too, buddy. 

Hi, Mommy!
I’m happy!

will this ever get easier?

I have asked myself this question so many times in what felt like weak moments.

There are parts of this autism motherhood road I have accepted will not get any easier. There is no way to dull the pain you feel while watching your child battle big things, things no child should have to face. The anxiety, rigidity, and emotions they cannot make sense of or verbalize. Their frustration channeled into self-injurious behaviors. 

When your child hurts, you hurt. Try as I may, I cannot come up with the words to describe the feeling of seeing my son hurt himself out of frustration.  When there is nothing left for him to do except scream at the top of his little lungs, the words he needs consistently trapped deep inside of him. I picture our developed brains something like a smoothly running interstate, while my son’s is an entanglement of traffic jams, dead ends, and one-way streets.  A never-ending, exhausting road. 

Admitting the difficult, to yourself or others, is not weak. 

That is where you learn to grow, adapt, and summon up your strength and resilience.

Whatever your struggle is right now, keep at it. Lean on others, talk about it.

You will grow stronger. 

This is SEVEN


Wilson loves watermelon, music, tools, and also things like paper, sunsets, his reflection, and the wind on his face or below his feet. 🍃

He’s constantly taking things apart so he can learn how to put them back together. 🥁 

I love watching him explore this world and learn how to connect with people in his very own, beautiful way. 

May he always be this curious, kind, and wild. 

Happy birthday, sweet boy.

you are a good parent

“… You’re not in control of what life throws at you, you are in control of the fight.” – Rachel Hollis

Truth: It has been a little rough over here. And I know a lot of families are feeling it too. A little Monday motivation (ok and a lot of self-talk) coming at you…

You are a good parent.

Whether you choose to send your child to school, therapy, a neighborhood cohort, daycare or homeschool.

Or maybe that choice was made for you by state and county regulations.

There are no right or wrong answers right now. Only the path that’s best for your family.

You are enough.

Remember this as you head down this new, unknown road. As you prepare for the balancing act of your life and gear up to fight for continued support and services for your kids.

You are stronger than you know.

If you ever doubt this, look at your kids. Their strength, adaptability, and resilience and just how far they’ve come in their short time on this earth. Then get back in the ring.

We’ve got this.

speaking in pictures

This boy loves the water.

On a recent trip, we asked him every day, several times, if he wanted to go swimming. He firmly, directly, and absolutely said, “No.”

So, someone would stay home with him while the others headed for the pool. I chalked it up to mood, sometimes you just don’t know with him. He can be over a favorite toy or hobby in the blink of an eye. I do not get nor expect an explanation.

After three days of this, we decided to take a picture of the pool. This was the same pool he had been to so many times before, so we figured this was worth a try. I had a feeling something was lost in our communication.

The next day, we showed him the photo and asked if he wanted to go swimming. He excitedly responded with “Yes!”

Back to the beginning, the first specialists we saw when Wilson’s speech development was delayed continually insisted that he needed more visuals in his life. All day long, he should have images to remind him things like how to wash his hands or use the bathroom, visual schedules to transition from one activity to another, food visuals, stop/go images for safety, etc.

This was hard to wrap my head around. He knew how to do all these things, and I knew he understood so many words even though he couldn’t say many. I thought they were just trying to put him in the “autism box” – assuming he needed these seemingly excessive visuals like many other children with autism.  I stubbornly wanted him to understand me, my way. I so badly wanted the words coaxed out of him.

But they were right. Eventually our walls were covered with these images he quite simply needed for regulation. Stories on self-care, self-calming techniques, stop signs, daily routines, and schedules. We kept images in the diaper bag, on our keychains and cell phones.  We’d scribble plans out on whiteboards and leave instructions with caregivers to do the same.

It didn’t matter if you were the World’s Most Terrible Artist, he listened to these images. He understood them. Especially when his anxiety was heightened and regulation down, this was the way we could earn his attention.

Fast forward, and today this sweet boy knows hundreds of new words and concepts. He continues to understand so much more than he can say. Words have a way of escaping him. He learns them, he knows them, and then he often cannot access them. This frustrates the hell right out of him. This is the downright unfair, heartbreaking part of his brain working in this way it has been designed.

We can tell him the plan 1,000 times. He’ll anxiously repeat it back to us, over an over, waiting for confirmation that he has it down correctly. If we SHOW him, he calms, accepts, and moves on. He might come back and quietly check the image or schedule again and then continues with what he was doing.

Now he is the one adorning our walls with visuals. He draws, cuts and glues paper, and carefully hangs his creations with blue tape. I think he knows he can say so much more this way, and we are listening.

Communication looks different for everyone, and it’s constantly evolving. Keep trying new approaches and circling back to old tactics, even the ones that didn’t work the first go-around. It is always worth a try.

“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.