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.

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I find it so fascinating that someone who can be viewed as so “different” really just craves sameness.

But that’s just one of the many contradictions that lives in this autism world of ours.

Wilson’s obsessive, rigid and repetitive behaviors are sometimes the toughest part of his autism. Often times he needs things lined up, counted, and categorized.  Sometimes he is just incapable of adapting or any kind of flexibility in thoughts or routines.

These rituals and need for order help him block out the stuff around him that’s just too hard to process, like emotions, language, stress, and sensory overstimulation.

This is his latest passion: he rolls up his clothes and puts them away in the same spot every time he leaves the house. He RELIES on the fact that they will be in that same spot when he returns. He immediately puts the outfit back on, and rolls it up and puts it away before bed.

We lovingly joke that he’s like Mr. Rogers putting on his sweater when he arrives.

We try to sneak in some washes when he is at school or asleep. He gets VERY distraught if the clothes aren’t where he left them or, heaven-forbid, they get spilled on.

He’s a little Marie Kondo in the making 😉

Click the image below to see the video!

I Love Someone with Autism

So often we avoid talking about the tough stuff. When someone is going through a difficult or emotional time, many people respond by backing away. They fear offending the person or getting it wrong or not having all the best advice or ability to “fix” the situation. I am guilty of this, even with my closest friends and family.

When it comes to autism, I want to talk about it.

The Centers for Disease Control and Prevention (CDC) says that autism now affects 1 in 59 children in the US. Including this handsome little man right here.

This number used to be 1 in a 1,000.

What does this mean? I am not here to start a debate about vaccinations, or epidemics or finding cures.

What this means is that you are VERY likely to cross paths with someone on the spectrum. This person might be in your very own family or circle of friends, at your children’s school, the neighborhood playground, or the grocery store.

Autism will touch your life.

I want to talk about some ways to support kids with autism and their families.

  • Lead by example. Your children see the way you are around people who are different.
  • Talk with your kids about autism. When they see a child behaving in a unique manner, draw on the similarities they share with your child. “Look, that boy loves the swings, too!” Your child will find their new buddy to be no less happy, fun, loving, adventurous and interesting as their other friends.
  • If a child tries to interact with my boy, he may not respond. He likely didn’t understand the question, or doesn’t realize someone is talking to him. He isn’t intentionally ignoring, and would never want to hurt anyone or make them sad.
  • This kind of social interaction is INVALUABLE for him to practice. Children should be encouraged to ask again, try again later, or “give” him the words to say. “Come get me!” “Let’s go!”
  • If a child is upset, give them some space. They are likely overwhelmed and/or sensory overloaded so too many words can heighten the situation. Offer a hug, or try counting down on your fingers.
  • Some kids on spectrum will repeat themselves over and over again. Children can respond gently with “I need a break” or “not right now”.
  • Remember that these kids can hear, feel and understand so much, even if they don’t say as much.
  • Don’t be afraid to ask questions (both parents and kids!) except “is your child high-functioning?” Who wants to go around with a low-functioning label? And don’t be afraid if your child asks forward and bold questions! Even if it creates an awkward moment, it’s the perfect moment to spread awareness and I love it.

And to support the autism moms and dads out there, especially ones with newly diagnosed kids, remember that you don’t have to fix anything. Just listen.

Autism mom and writer, Diane Dokko Kim, said it so well: “We will do the talking. There is so much in our heart that’s conflicted. We need a safe place to unpack it. You know what I really need from my friends? Just come and bring the emotional barf bag, I will fill it.”

When we sit in pain or struggle to unpack emotions, sometimes we just need a friend to sit with us.

Thank you for continuing to learn about autism, now I want you to talk about it too! Start a conversation, with your kids, your friend, your neighbor, your bartender, etc.

You are helping us spread kindness, inclusion, connection, understanding, patience, and so much love.

 

Autism Is…

This is a small glimpse into our little boy’s life with autism.

When my son was diagnosed at 3 years old, I spent a lot of time trying to condense autism down to something tangible, to fit it into a nice pretty little box.

I was desperately trying to understand what my boy was going through, so I could help others do the same.

It didn’t take long to realize that autism has so many varying elements, contrasting characteristics, unpredictable and unique journeys.

Autism is so much more than most people realize.

We share our story to help spread autism awareness and with the hope that this knowledge leads to more patience, kindness, inclusion, advocacy, acceptance and love everywhere.

 

If you’d like to share our video, follow or copy the link below:

 https://www.youtube.com/watch?v=vuglqN6k1PI