World Autism Awareness Day 💙

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We participate in Light It Up Blue to celebrate our boy and all of the hard work he puts in every single day.

Autism will touch your life. You will interact with people on the spectrum in your community, your workplace, and in your children’s classrooms.

That is why we share our story. To help spread awareness, understanding, acceptance, inclusion and kindness so that everyone impacted by autism can find some more compassion and patience along their road.

Our hearts are FULL seeing all the photos roll in of you all in your BLUE!! Keep them coming, friends! You can text, post on social media or email them to wilsonsclimb@email.com. We’re putting together a special little something for our guy.

We’re so thankful you are on this journey with us.

The Autism Merry-Go-Round

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Some days, it feels like we are climbing onto the exact same merry-go-round that we were on yesterday, and the day before that and the one before that. The same music, same speed, same smells, and Wilson would undoubtedly choose the same horse to ride every single time. We continue, round and round, stuck on a loop.

Sounds peaceful, right? Until the song changes, an undesirable sound or image comes into the loop. Or the lights are too bright or too dim. Something familiar is missing, out of place or different than how we left it.

Experiencing these things can completely stop Wilson’s little world from turning.

Sometimes I see them coming, these are same battles we fight daily. Like keeping the lights all on or off (he does not tolerate anything in-between) or which clothes to wear or new food exposure. But there are always new ones, lurking and ready to cause chaos at any moment. Like the time the dog peed on the rug and Wilson lost his mind because the rug was missing.

It’s funny, how something so seemingly predictable as the daily routine in this autism life always finds a way of surprising us, throwing us off course, breaking us down or teaching us something new.

This is what autism does in our world every single day.

To recover from the chaos, Wilson finds a new loop.   He seeks comfort in the reliable, the orderly, the routine.

Lining up, counting, reciting, and repetition.

animal lineupBWStimming (repetition of physical movements, sounds, or words, or the repetitive movement of objects) occurs more often when he is anxious or overwhelmed. Sameness calms him. The reliability of numbers and the order they belong in, lining up toys, crayons, apple slices, you name it. This works wonderfully to regulate him.

Until something is missing.

Then our house in turned upside down looking for a red crayon, a puzzle piece, or a train the size of my pinky that is missing from the lineup. A well-loved DVD that has been toddler-handled one too many times, or the red spatula I’m cooking with that he suddenly needs to be back in the drawer with all the other red cooking utensils.

Currently, one of the only shows he tolerates is the movie The Incredibles, but only for the first 8 minutes and 21 seconds. He watches while clutching the remote so he is certain he can stop it at the exact point when necessary. The rest of us would sure love to know what else happens in that movie!

Wilson incredibles

I think he does this to try and memorize it all, so he can interpret it more easily the next time he sees it. So he can predict the music, volume changes, songs, words and actions of the characters. He’s also been taking that DVD cover with him everywhere. To bed, the bathroom, the kitchen table. It’s his new treasure.

One day, this will change. He will no longer tolerate this movie and will have moved on to the next little obsession, just like he has done before. None of us know when or why, it just happens.

It’s fascinating that he uses these techniques to block out other things happening in his environment that are more difficult for him to process. The most common sensory processing difficulty for Wilson is sounds, but it can also be light, heat, stressful emotions, or just over-stimulation.

Similarly, he eats the same foods each day, and I mean SAME, right down to the brand. It’s a real pain when these brands decide to change their packaging or worse, are discontinued. Then there are times when he just stops eating something he’s been eating for years. I suppose even he can grow tired of the unvaried.

Our sameness is unpredictable. But every day, we will buy a ticket, hold on tight, and ride that merry-go-round with him.

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Bye-Bye Tooth!

 

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In other news, Wilson lost his first tooth!

I knew this was coming and would go one of two ways. 1- He would barely notice, and might not acknowledge it or show me. 2- He would get very upset about the change and want it put back in his mouth immediately.

Turns out, both options were right to assume. When the time came, he calmly removed his tooth himself. We showed him his reflection and cheered and he was happy for a bit and then went right back to what he was doing before. Then he tried to throw the tooth in the garbage.

His sister insisted we write a letter to the tooth fairy, explaining that Wilson would prefer she leave a toy instead of money because she thought he would really like that.

We showed him books about the tooth fairy, but abstract ideas and concepts like this are really hard for him to understand.

He went to bed and I thought that whole ordeal was way easier than I had anticipated.

But then he started sobbing. He was incredibly sad. He doesn’t have the words, but I know what he was thinking. “Where did my tooth go and what’s this big hole in my mouth and why can’t we just put the tooth back right now?”

He finally calmed after his sweet little friend sent him a video, showing him that she had the lost the very same tooth and that it was all going to be okay.

Continually thankful for our (now virtual) tribe!

 

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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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.

 

Our Tribe, I’m So Thankful for You

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and an autism mom, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help. A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind and generous humans who constantly offer their support.

Our friends and family and friends who are family, you open your homes to our curious five-year-old to redecorate, climb on furniture, your laps and shoulders and oblige him in his relentless requests to be chased in circles.

You continually say “hi” and attempt to engage with our little man, even when you know he will likely not hear you and walk on by.

Somedays he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us.

I am so thankful for you.

His teachers, behavior interventionists, doctors, therapists and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.

I am so thankful for you.

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His BCBA, you were the first one to tell me that it was going to be OK and make me believe it. You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

I am so thankful for you.

His little buddies, you have the most innocent, loving hearts. You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

I am so thankful for you.

wilson and buddies

The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable. I know my words don’t resonate with everyone but they might with you. Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

I am so thankful for you.

All of our friends, family and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story. You encourage, support and lift us. When you share our story you are spreading autism awareness and acceptance.

I am so thankful for you.

Charlie, aka little sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also love, include and protect him. You aren’t afraid to get right up in his face so he sees you, so he hears you, and you would never go to sleep without giving him a hug goodnight.

I am so thankful for you.

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Our little one’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.

You keep him happy and safe, which isn’t easy but is our greatest purpose. You know him and you love him so well.

You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

I am so thankful for you.

Wilson and dad

My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to. You’ve helped me find patience, and still I pray for more every single night.

You have forced me into a vulnerability like I have never known, and shown me all the amazingness that follows such a leap.

You’ve shown us how hard your world can be. Through frustration, pain, confusion and sleep deprivation you are still so happy in your soul. You’ve shown me this is not only possible, it’s just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

Wilson LOVE