Let’s Change the World

“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. Contradiction. Hope. Unconditional love and loyalty. It’s falling down and getting back up. It’s courage + resilience. 

“I would not change my son for the world. I would change the world for my son.” 

I came across this quote the other day and it reminded me: This is why I share my son’s story.  There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience, and compassion. 

So, let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.  

All children could benefit from a friend to help them overcome challenges and build confidence and self-worth.  Let’s teach them acceptance and inclusion.

Let’s change the world.

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.

awareness + acceptance

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.

A Very Merry Season

I was wrapping presents last night when I came across one designed for children 3-5 years old that I had purchased for my eight-year-old.  It got me thinking about how we do things a little differently around here.

Throughout the years, we’ve found that not every holiday event is one we should attempt.  Occasionally we get a sitter for the outings that we know Wilson cannot tolerate so his sister still has the chance to go. Sometimes we leave early, or we arrive late. And sometimes we buy toys designed for toddlers because we know how happy they will make him.

This year, we were all able to go on a holiday train ride to see the city lights. We even saw Santa and Mrs. Claus, and Wilson did amazing. He loved every minute of the ride (beyond the wait to board the train.)  This was huge progress for him, and something we wouldn’t have attempted just a few years ago.

I don’t share this for any kind of “I’m sorry” or what not. The fact is that we don’t lack any JOY around the holidays while doing things a little differently. I wish everyone could FEEL this season the way that Wilson does.  I am overjoyed to be wrapping these items that I know will bring my boy such happiness, all while knowing that they may also lead to some overwhelm or sensory overload, too. I can appreciate a time not that long ago when we were at much more of a loss as to what to get for him. He’s never asked for much of anything.

Doing things differently was harder in the beginning. Birthday parties, trips, holidays.  Now we appreciate the joy and balance we find in the way we do these things our own way.

So, this little note is here as a reminder for those in the beginning, the ones struggling with wrapping their heads around “different”, the ones stumbling and getting back up. It gets better.

Or maybe you have friends or family with kiddos like Wilson, who are navigating things like autism, sensory processing disorder, developmental disabilities, or anxiety.

During these times, your grace and patience is extra meaningful and so appreciated.

Be easy on you, and where you are in this. And remember, it always gets better.

Wishing you so much JOY this holiday season.

xo,

Lauren

Appreciating the Slow Progress

All that progress at the salon and then look what his mama did!   I feel like a broken record talking about haircuts on here, but I am so blown away at how this boy is doing with them these days. There was a time when I honestly thought we just wouldn’t be able to cut this guy’s hair. It was just too much for him, and in turn, too much on everyone around him.  I resolved that we would have our own Wilson-Rapunzel situation going on for the rest of our lives and that would be simply fine because the torture that haircuts caused all around was just not worth it.

Here we are, seven years later, and he is cool as a cucumber (well, almost) as mom decides she’s going to buzz all his hair off. I think he’s pretty impressed with the outcome.

A reminder to appreciate the progress, no matter how slow it may be!

The Magic of the Season

Well, the magic of this season is finally upon us. If Wilson had it his way, we would have gotten our tree on Halloween. With some carefully crafted social stories, a countdown calendar, and a felt tree to decorate in the meantime (from a very thoughtful friend), we were able to hold him over until now.

This boy brings the JOY, let me tell you. He has seen Santa three times already (something that used to be such a tough production for us all) and he just walks right up and says, “Merry Christmas, Santa!”

He and his sister decorated our tree, and he continues to adjust and rearrange ornaments daily. I found him sitting by the tree, “reading” a Christmas themed book the other night. He just FEELS this season so deeply, it’s hard to explain. I really can’t tell you what it feels like to see him so HAPPY.

If you see him in the next few weeks, he will likely serenade you with a few rounds of “We Wish You a Merry Christmas”.  I just love watching him spread so much love and joy and cheer this time of year. It really is contagious. Watch a sweet video below of Wilson getting into the Christmas spirit!

Video Reel of Wilson getting into the Christmas spirit!

let someone sit with you

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

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.

Unconditional Sibling Love

I’ve found it very difficult to protect my heart when it’s beating outside of my body. These days it’s running around in the form of little sandy-haired, blue-eyed kids, in such vulnerable form.  

I’ve wanted to protect these two from the Big Bad World since the moment I met them. Most of the time, my boy’s adventurous spirit would get in the way of the bubble wrapped life I had in mind for him.  

I wasn’t ready for fearless. I wasn’t ready for vulnerable. I wasn’t ready for autism.

How will I protect him now? Will he be OK?

Will he ever talk? Attend school? Be bullied on the playground? Will he have a job? Drive? Live independently? Fall in love? And commence the spiral to nowhere.

As parents, we never want our children to feel pain and sadness. Hunger or cold. Lost or confused. It tears me up from the inside out when I look into my boy’s eyes and see how confused and frustrated he can become.

I remember a moment years ago when, during one of his meltdowns, his 2-year-old little sister hugged him and would not let go. Eventually he started laughing because it became a game to try and get her off him.

I noticed something that day. The way she looked at him. It was simple and unconditional adoration. In her eyes, he isn’t “different”. He is her big brother. Her hero. Her person.

I pray that she will always see him in that same light. As time passes, the weight of his world will inevitably impact hers more.  New challenges will arise, they both will grow and change, but oh, how I hope that their unconditional love remains the same.

My children are both unique and made for one another. I can’t catch them every time they fall, but I can teach them how to help one another back up. To comfort one another. To laugh together.

They have shown us fearless. They have taught us how to find comfort in vulnerability.

My son has a phenomenal tribe of family, friends, doctors, teachers, therapists, specialists, and peers to help raise him up as high as he can go.

And he has her.

So just like that, I had all the answers to that pesky spiral to nowhere:

He’s going to be amazing.

They both are.

autism & changing the world

When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.

It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.

We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.

The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.

I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.

I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.

I want people to know that his favorite color is red. He has never told me this, I just know.

I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.

You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.

Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.

I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.

This is where we begin to try and change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.

We are so thankful that you are here with us!