Bye-Bye 2019

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It was a good year for our sweet boy. I might not have said that if you asked me during it, you don’t always notice or appreciate progress when you are in the thick of the hard work.

Only now, as I look back, does it really hit me how far Wilson has come, and how resilient he is with the work he puts in every single day.

He is using more words and visuals and screaming less. He made big strides with biking and tolerated some work with swimming. He had a couple successful visits to the dentist and worked on helping at the grocery store and sitting for a treat at the coffee shop.

And do you see that HAIR?! He put in some major work with haircutting this year and is looking like a total stud. Where did my toddler go?! 😢 Oh, and he learned how to write his NAME!

Wilson faced a lot of changes this year, including switching to a new ABA program and working with many new faces. He was so brave and excited to explore some new territory.

His tribe just keeps growing…this little guy is so loved and supported and we continue to be so incredibly grateful.

We have lots of goals for this kid in 2020 and I know he is going to crush them all. We are excited to watch him dive into more music and art projects – he’s so drawn to these areas and is surrounded by wonderful therapists who are eager to help him explore.

He remains on the move! Watch for this guy climbing, swimming, bouncing, swinging, spinning and dancing in the new year!

click on image below for a quick video recap of his year! 🎥

Birthdays and Autism

 

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My little ONE-year-old

As a parent to a toddler on the autism spectrum, birthdays were hard. Seeing my son around his peers was a very loud reminder of just how old he was and where he was developmentally.

In those pre-autism-diagnosis days, we attempted all the traditional birthday festivities that a typical child would enjoy and our son wanted nothing to do with any of it. We couldn’t get him to open a present, listen to the “Happy Birthday” song or even look at his cake, let alone taste it. He ignored all of our friends and family and their birthday well-wishes.

My friends would tell sweet stories about words their children were saying and I would completely miss the cuteness and celebration of it all. I was stuck on the fact that those children were talking and my boy wasn’t.

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Wilson’s First Birthday

I was jealous and then I felt guilt and anger about that jealousy. So many ugly emotions.

One year we really didn’t want to do anything to celebrate his birthday. It’s so frustrating when something that is supposed to be fun ends up overwhelming and upsetting him.

Parents: if you can relate to this, I want to remind you to hang in there.

Over time, our son has shown us that birthdays should not be hard or sad. Or remind us of his delays. He has shown us how to best celebrate him, and that it’s OK if that doesn’t look “typical”.

This past year, our little six-year-old had the best birthday celebration to date. Friends brought his favorite things: old keys, wooden treasure chests and tons of other pirate paraphernalia.

He was so happy.

He still didn’t eat the cake, but he did request the birthday song multiple times and all of our friends and family indulged him in several rounds of the tune. The look on his face while we sang to him was better than the byproduct of any cookie-cutter birthday party I had imagined in years past.

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This is SIX!

Attending his peers’ birthday celebrations was and remains a whole other ball game. Our little guy doesn’t understand this it isn’t his day. He believes candles should be blown out and presents should be opened, simple as that.

We’re navigating these events more smoothly with visual schedules and a lot of planning ahead. This usually means bringing his own candle along so he can blow it out and staying for a brief visit before he gets overwhelmed. Knowing what is ahead is huge – we don’t want to be bothersome to the party-planners but most often need to know the details for the sake of EVERY invitee’s enjoyment.

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Great Grandpa’s Birthday

We’ve learned to not only try new things, but to revisit old tactics that may have not worked the first time around. Keep trying all the things: silly, practical, innovative and traditional.

I can’t tell you how many times things have gone differently than I expected them to. These moments often times felt like a failure. Now I know they were just stepping stones to get us where we need to be. It’s all worth a try to make our boy feel strong, calm, and happy.

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Progress will happen. It just might look different than you had imagined. Be careful not to miss it.

Your child will grow and change. And you will too.

You will learn how to best celebrate them in a way that is so incredibly special to them. It doesn’t matter if they aren’t interested in the latest Marvel characters, sports teams or Disney princesses.

I will celebrate my little pirate and continue to round up old keys for him forever if that is what endlessly fascinates him and makes him happy.

Now, we celebrate BIG. No more comparisons. Our boy is in a league of his own, right where he belongs.

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Joy ❄️

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Check out this HAPPINESS

Once again, a huge thank you to locations that provide Santa visiting hours for kids with sensory processing difficulties.  The kind Santas and whoever this totally awesome person was in the bear suit… heart and patience like yours mean more than you know to families like ours.

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Wilson was in awe of Santa’s cottage, of course after he checked on a few of the toys that were out of place from last years’ visit 😊#incrediblememory

This kid was absolutely GIDDY dancing with the holiday bear. They tickled and cuddled and Wilson said a completely unprompted “thank you, bear!” When it was time to leave. ❤️ #fullheart


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Malls, crowds, lights, lots of noise and unpredictably cause Wilson’s anxiety to rapidly escalate. Without this opportunity in a calm and peaceful environment, we wouldn’t have had the chance to see this wonder and joy in him. ❄️

This absolutely made my holiday season!! I think it made his too 😊🎄

click the photo below for a sweet video! ❤️

 

Slow and Steady Progress

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There was a time when I thought this kid would NEVER, EVER, get a haircut.

Today, we busted this one out in 5-10 minutes with NO SCREAMING! 😱

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I’ve already posted about haircut progress in the past, so I’ll spare you all the desensitization details.

Moms and Dads: hang in there if you are dealing with this or other sensory sensitivities, potty training, etc. It will get better.

If you think you are moving slow and taking baby steps, move even SLOWER and take smaller steps. It will be worth the time spent.

Side note: his incentive today was canned green beans 🤷🏼‍♀️ he wants what he wants! And when I tried to give him a new brand with no salt added, he smelled them and requested “different green beans”. Can’t sneak anything past this stud! 🤣

Also pictured below- our white board where we keep track of stars earned during the haircut and my version of a cup of green beans. 🙌🏻

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Also side note: he does NOT stop moving 🌪 but was so happy, I needed to capture it 📸 .

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As goes with autism, attempting this cut the night before school pictures could have gone VERY differently!! .

Today was a good day 💙 

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I Would Not Change My Son for the World.

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“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.

Many people are unaware of the reasons behind some “autistic behaviors”. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.

Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people. I am slowly learning more about the triggers and sensitivities in Wilson’s world.

He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.

He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down.

He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.

He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song will help.

Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over. He gets irritated if we take a different route to therapy or home. His memory is truly incredible.

When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch. He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down.

People stare and make snarky remarks. Luckily, this only bothers my husband and I.

Wilson doesn’t read other’s emotions well or understand the comments. Someday he will though.

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.

 

(originally posted: April 16, 2018)

The Fear of Wandering

Wilson farm.jpegLast night, I saw my sweet boy for the first time as a grown young man. My dream was so real. Until now, I really hadn’t been able to picture him outside of toddlerhood. I kind of blame that on autism. Maybe it’s the language barrier between us, or the discomfort of not knowing exactly what his future looks like. For some reason I just couldn’t picture him, or didn’t allow myself to try.

He was big, taller than me. Happy and gentle. And strong. He clung tightly to my arm as we walked through a busy hotel lobby, I could tell the noise and new space made him uneasy.

I was so proud of him. He had grown so much and made progress beyond my expectations. As a family, we were enjoying our time outside at the hotel pool when the all-too-familiar panic set in.

I lost him.

I frantically ran through the busy hotel, the pool, the restaurants, and lobby searching and asking strangers if they had seen him.

The panic really set in when I realized that no one seemed to meet me at my level of concern. It wasn’t a missing child, after all. I was looking for a grown man.

A teen annoyed with his mom, or a young man running an errand, a miscommunication, they probably thought. But my young man was still a boy, really, and he will not find his way back, and certain lights and sounds literally cause him pain, and he takes almost everything literally and he could walk right into traffic…but how do you explain all of that when you are hysterical?

This dream topped all the heart-pounding ones of the past: the missed college exams, waitressing in the weeds, falling. I’ve had a pit in my stomach all day about it. It was just a dream, but one that very easily could be our reality.

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Wandering (or eloping) is a concern that parents of children with autism deal with long after the toddler years.

That fear may never go away. And that’s ok.

We will continue riding the waves of autism with our sweet boy. The highs, the progress, remind us to remain hopeful. The regressions keep us resilient. They keep us fighting for better.

I am so thankful for the recent progress we’ve seen in our boy. Even though this dream ended with a large dose of our autism reality, it gave me the gift of a little glimpse of who he can become. And I am more excited than ever.

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Born Rad

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The R-word is done, guys. Bye! see ya! Broaden-your-vocabulary-never-to-be-used-again. Gone.

Some friends and I went to an amateur comedy show last night. It was really fun until the last comic starting making fun of people with special needs. And used the R-word repeatedly.

I was beyond disgusted that ANYONE would think his jokes were funny.

I came home to see my sweet little guy asleep in his bed and I just fell apart. I can’t understand how anyone could think this perfect little human’s very real struggles are funny.

I’m not going to start listing off all the things my son may never do because of his particular neurological design. That’s a rabbit hole I steer clear of on the regular. But I damn sure hope he is never in a room like I was last night, where people with different abilities were the punch lines.

October is National Bullying Prevention Month and this is a perfect reminder of the roles we play and the influence we have on others.

Everyone laughing at those crude jokes were just as much a part of the problem as the man spewing them.

Stand up for what you believe to be right vs wrong. Use your voice. Use your actions. THEY MATTER. I promise you will regret your inaction more than taking an opportunity to stand up for what is RIGHT.

 

Happiness

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If I could just freeze this moment in time… 🙌🏻 This HAPPINESS. It’s so fleeting most days. Anxiety, communication disorders, sensory sensitivities, rigidity, repetitive behaviors… they all get in the way of THIS.

All of us are confused and scared about how this world operates. But for our little guy…it is so inexplicably complicated and overwhelming EVERY SINGLE DAY.

I try and see the world through his eyes and sometimes it’s beautiful, like when he stops to dance with his shadow or says “hi” to strangers.  He is wildly uninhibited and I adore that about him.

Then there the times when it is bewildering.  So unsettling and overwhelming that I cannot even bear it.

I just want him to be ok. To live right here, in this happiness. 💙

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This is SIX!!

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Our little pirate is SIX! 🏴‍☠️and he’s the happiest we’ve seen him in awhile.

He’s taught me more in these last six years than I could have ever seen coming…

•How to find the good in the hard, messy and chaotic.

•To always plan and prepare but that plan will likely, always, often almost certainly change. 🙃

•To be brave and always Advocate like a Mother 👊🏻

•Happiness really can be so simple. 🗝

•What it feels like to have your heart completely bursting with pride. 💙

We can’t wait to see what the next year brings. 🧩

Change is HARD

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Today we said goodbye to the ABA program and interventionists that have worked with Wilson for the past 2 1/2 years.

These people choose to work with children with autism every day, and that is not an easy path. They are patient, persistent, caring, fun, gentle and above all, they kept our boy safe and they believe in him.

Wilson is a different kid now than he was when he walked through those doors years ago.

His team helped him learn self care routines, potty training, hair cutting, group play, how to take turns with a friend and how to be an awesome big brother.

He learned SO many words, coping tools, games, safety awareness and overcame sensory difficulties. 

He went biking, rock climbing, swimming, and on many community outings.

We’d be lost without the countless hours of parent training, advice and support we’ve received about every new, messy, exciting, and frightening thing that came our way.

I truly don’t know how to thank these beautiful humans besides continuing to work on all they have taught us.

They all signed this book for him 💙Oh the places you’ll go, kid!  We’ll miss this place and these people dearly but are looking forward to all he’ll conquer on his next adventure.