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.

Be Kind

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“Do you need to borrow my belt?”

This is the “helpful” offer I received from a man today while I was desperately trying to coax my son off the ground and out of a full blown meltdown in the middle of a busy grocery store parking lot.

What this man couldn’t see was that my son has autism, and we have been practicing going to the grocery store 1-2 times a week for the past month. Most visits have been successful, today was not. We were at a new store and out of routine, which is so important to him.

We had been to the bank prior, which had an absurdly long wait, during which my boy laid on the ground, totally fascinated with the cracks in the grout between the tiles. People stared but he was quiet and happy so it was a successful stop. We moved on to the new grocery store and he did great during the brief visit, and then we had a communication breakdown on the way out.

Here’s the thing. You NEVER fully know what someone else is going through. If you catch yourself judging or making assumptions about a stranger, STOP. You are probably, maybe, sometimes, often or always going to be wrong.

Be kind. Be helpful. Or be QUIET.

You know what WOULD have been helpful? If he had offered to carry my bags, told me to “hang in there” or BOUGHT ME A BEER because I obviously needed one or three. Implying my boy was simply short on discipline was enraging. And sad. And disappointing.

I fumbled with my son’s visual schedule and tried to get down on the hot pavement and reason with him but he was too far gone. When there is risk of him hurting himself, I have to physically intervene. Which, SPOILER, he does not like.

I told my three-year-old daughter to hang on to my shirt and I scooped up my almost-six-year-old and carried his flailing, screaming body through the parking lot. He kicked me, kicked cars (sorry!) and hit himself. It wasn’t pretty.

I’ll tell you it hasn’t gotten much easier over these past few years having all those eyes on us in the heat of these moments, and that comment did not help. I know exactly where he should stick that stupid belt.

This kid is so resilient though. Someday I will be too.

Besides mourning the loss of the stickers he scored at the bank (they were a casualty of the scuffle) he has moved on and is back to his happy self. And here I am still blood-boiling over it. Which is so silly, the whole ordeal was much harder on him. He couldn’t communicate his needs or his frustration and was abruptly physically removed. He never even noticed the bystanders.

I learn so much from this tough little cookie and am so proud of all the work he puts in. You can bet we’ll be back at the grocery store next week.

Haircut PROGRESS!!

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I honestly never pictured actually getting to this point. If you have a kiddo who REALLY struggles with haircuts and/or other sensory processing difficulties, slow and steady changes can make all the difference. We’ve been working on our haircutting program with very specific steps for over a year now.

We created a program within his ABA therapy that included steps performed by different therapists and us across different locations EVERY SINGLE DAY.

The first step was him allowing the clippers to be in the SAME ROOM as him. This took time to work through, as he would scream and attempt to flee when he saw them.

Next step- allowing the clippers to be PLUGGED IN while in the room with him. You can bet he noticed the difference!

At this point in the process I seriously wondered if we would EVER get to a point where we were actually CUTTING hair!!

Many, MANY steps and progress/regression followed. Slow, steady and consistent steps made all the difference. Trust the process.

Now, he sits down and puts the cape on when it’s time for a haircut. No screaming, no covering his ears (we started with headphones and have grown past the need for those) and barely any flinching or squirming.

Where we struggled:

The incentive has to be enough and what it is will likely change. He’s smart and when he would decide he didn’t feel like working on it- we had to up our incentive game!! (You guys- this doesn’t have to be HUGE. For the haircut above 👆🏻 he really wanted green beans. Find what works for your kiddo at the time!)

Only do a little bit each day- don’t get excited and push too far.

Trust me- they’ll remember next time!! Keeping each session brief will make them more willing the next time.

Oh yeah, and DON’T GIVE UP!!

Expectations

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Apparently this kid knows how to WRITE HIS NAME! I say “apparently” because I had no idea he could do that and actually had convinced myself that he wouldn’t be able to for quite a while.

To be honest, I really haven’t expected him to do things (emotionally, socially or academically) anywhere near other children his age.

Developmental disabilities can make it very hard to gauge what to expect from your child. With Wilson’s communication difficulties, it’s nearly impossible to test or evaluate all that he knows. We leave almost ALL of these types of appointments knowing the evaluators didn’t even get a glimpse of all that is Wilson.

Sometimes we get so focused on all of the things he CANNOT do and how to help him overcome his challenges, that we risk missing out on all of the amazing ABILITIES he has to be celebrated NOW.

This little guy is constantly reminding me to STOP underestimating him!

I told our OT that Wilson had written his name at ABA therapy last week after being shown it written out and prompted once. Everyone there was surprised he had done it and I assumed it was a single fluke incident. He has an amazing memory and has always been great at imitation, but he has struggled learning which letters are which, so I figured he somehow had memorized the image he saw and could immediately draw it (still amazing!)

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First time: His therapist wrote the bottom version and then folded the paper so he couldn’t see it while attempting it himself.

So, while it was still SO impressive that he wrote his name by memorizing the image of it, I assumed it wouldn’t happen again until he learned each letter individually and even then it would take time for him to learn the exact sequence that makes up his name.

Our OT wrote “WILSON” on the board and asked him to write his name on a separate board. He NEVER glanced up at the example she had offered, and wrote “Wilson” on his board. Lowercase. He knows how to write his name!!!

So here that amazing memory and imitation is serving him well to work on writing and letters.

I cannot wait to learn more as we explore together and help our little guy find his passions and show his brilliance. And I most certainly will stop underestimating him!

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