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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Visual Schedules are a GAME CHANGER!

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Adding more visual supports has been SO helpful for Wilson. This was something that took me awhile to come around to understanding that he needed because I thought he KNEW most all of these words.

It was incredible to see how much of a difference it made for him to SEE them, especially when it comes to scheduling and first/then scenarios.

I can say “put your shoes on” 50x but if he sees an image of shoes, car, then school- he is more likely to complete all those steps without a million prompts.

Now he puts his own magnets up when he wants something and can’t exactly get those needs across verbally. He’s even started drawing items he wants! (His sandwich 🤣- see video below!)

Checking events off as they are completed has been really helpful as well.

The magnets we’re using here are schKIDules ordered from Amazon, and some wallet sized photo prints we made of items more specific to Wilson, like preferred foods/activities, his school, therapists, our house etc.

I also included a screenshot of the Choiceworks app we use for schedules on the go. It’s great- you can use stock photos or photos from your camera roll.

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For special events, park visits, doc appointments and other outings we bring a small whiteboard so we can draw or create checklists on the fly!

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Give some of these a try and if you have questions don’t hesitate to ask- I wish I hadn’t waited so long to make some of these simple things more available for the whole family!

Click the images below to see Wilson using his visual supports!

To the Special Needs Mom on Mother’s Day

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I am thinking about you today.

I want you to know that everything you do matters.

When you crawl into bed at night, aching from your temples to your toes, know that you have done enough. There may have been no progress made with toileting, feeding therapy or communication today and that is okay.

Your child is safe and so loved.

The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating.

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The research, the meltdowns, the battles over chicken nugget brands and clothing choices, repeating “first/then” all day long and the endless search for missing treasures can withdraw every ounce of patience from your soul.

The smeared feces, the eloping, the pica and other behaviors you watched your friend’s toddlers outgrow. Years later, they remain in your child.

Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.

You need to know that.

Your child may not be able to express this, some of you may have never even heard your child call you “Mom”.

But they know you are Mom.

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Your child is so grateful for all that you do and would be lost without you. Just as you would be lost without your sweet child.

I want you to know that you are not alone.

When your patience has been depleted.

When you’ve cried behind your sunglasses at a park as you watched your child’s differences come to light.

The loneliness you have felt from the long days spent with a child unable to read your emotions.

The difficult medical and educational decisions you struggle to make.

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Know that there are so many of us with you.

We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

I want you to find hope.

Today let’s bask in achievements and forget about regressions.

Even if only for one day.

Let your hope be stronger than your fears. With so many unknowns in the future, know that it’s going to get better.

I know this because 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.

I am so thankful for this sisterhood of amazing mothers today and every day.

Have a very Happy Mother’s Day.

 

 

 

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 of Wilson’s 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 or counting 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 on April 16, 2018

Autism is a Spectrum

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We are not aware.

“A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum.”

The autism spectrum consists of millions of unique individuals that do not fall into ONE place on the spectrum.  Some are incredibly talented in math or music but do not have appropriate self-care skills.  Some have mastered hiding their autistic behaviors like flapping, rocking, or humming, but they continue to have a whirlwind going on inside of them.

We are all aware of The Good Doctor and Rain Man or the quirky, smart kid at school. I love a feel-good story as much as the next person, but I think it’s important to talk about the other sides of autism that are not often seen or understood and certainly not portrayed in the media.

In her article, “My Son Has the Kind of Autism No One Talks About”, Bonnie Zampino, Engagement Specialist and special needs parent, reminds us just how unaware we are of these other aspects of autism:

“The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court.  We Light It Up Blue every April and pat ourselves on the back for being so aware.

But we aren’t aware.

Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go to the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.

This is the autism that no one talks about. This is the autism that no one wants to see.”

This isn’t about high-functioning and low-functioning.  It’s a reminder that “If you have met one person with autism, then you have met one person with autism.”

If you meet someone on the spectrum or a parent to a child on the spectrum, I encourage you to ask them about their child, and what they like to do, rather than try to pinpoint where they are on the spectrum. That’s impossible.

Autism is hard. It can be incredibly isolating. The more we continue to learn, the more aware we will be. Always lead with patience and kindness as you never know what someone else is going through.

 

A Day in the Life of Super Wilson

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Early morning Developmental Pediatrician appointment. 

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We use visual social stories to help him know what to expect. He did awesome!!

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Lunch in the car while listening to the Frozen soundtrack, of course.

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Straight to Applied Behavioral Analysis (ABA) therapy.

More Frozen in the car. ❄️

Home session of ABA therapy complete with a little haircut session that he CRUSHED!

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Sunshine and dinner with little sis.

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Bath and snuggled into his sleep tent.

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So to sum it up: work, work, work, work, work. We ask so much of this boy and I am constantly in awe of his perseverance.