Be Kind

grocery.2

“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!!

C03A56C1-8DF7-409B-BFE4-3B0F8590695D

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!!

Visual Schedules are a GAME CHANGER!

C96E81BB-149F-4C84-984B-D752B8F32ACD 

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.

7201E43D-8A28-4AD5-A1E2-8F1CC14CA19F

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!

5082180A-ED3C-4213-9A4C-FE85D3CB8CF1

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

shel quote

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.

OT swing

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.

wilson mom bw

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.

ASD longsleeves

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

advoate. JPEG

“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

EmmettFamily-2

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

449E9B0A-5DD5-4C17-A240-F93DB522C0FC

Early morning Developmental Pediatrician appointment. 

1C78E3EE-8FB3-438E-B01D-1CF1B33C321C

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

5B9A937B-BEC6-48C0-8E5C-E9AB79219D81

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

AFDCA5DC-98EB-499C-AB40-D71DE63B6AF1

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!

503DBF1B-BCC7-4042-8320-B5BEE4891F62

Sunshine and dinner with little sis.

EAE78BAC-75EE-40D7-BF07-C6D97E564A40

Bath and snuggled into his sleep tent.

FB85E8D4-B519-4AAB-8595-CD955659929E

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.

rituals & repetition

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!

New Year, New {Autism} Mom

advocate mother pink

I’ve never been that interested in New Year’s resolutions. But these days, as a mom to an adventurous five-year-old boy on the autism spectrum, I have found that goals are what give us direction, forward movement, and growth. They maintain our sanity and our hope. They are the light that remains through the daily storm of autism.

These are the top 10 goals I will accomplish this year. I’m not talking about aiming, striving or hoping. I WILL do these for myself, for my son and our family.

  1.  I will not fear the big stuff. The longstanding goals such as increased communication, temperament during haircutting, toileting and other self-care, broadening the diet and success and safety out in the community will all improve. While this “long-term” category can feel heavy and loom over us, we will not let these important pieces defeat us.

2.  Patience. Self-coping and calming techniques (for everyone in the family) have steadily made their way to the very top of our priority list. Some days, this is our only focus. For my son, every single other thing must come second as he cannot hear, speak and certainly cannot be reasoned with when he is overwhelmed or sensory-heightened.  Finding and remaining in this place of calm takes patience. So much patience. It’s funny, how many people comment on how patient I am. If only they knew the amount of time I spend searching and praying for more.

I will also be patient while my children stutter and search for their words or attempt to express their wants and needs. I will wait it out just a little longer when they struggle to put on their clothes or shoes, brush their hair and teeth, or attempt household chores. If I constantly jump in to assist, I’m robbing them of the opportunity to learn and gain confidence.

3. Join his world. So often, we are working on helping my son fit into our schedule or norms.

To join my boy’s world, to understand and connect, is such a struggle. We, as his parents, consciously work towards this every single day.

I will be his place of calm. Sometimes that means sitting on the kitchen floor and taking in his deep butterfly or bumble bee breaths with him. And some days this will happen on five different occasions before breakfast.

  1. Embrace the chaos. The couch jumping, dresser climbing, spinning, bouncing, running, loud scripting and high-pitched screaming. I will let him enjoy that energy for the freedom and happiness it brings him instead of constantly trying to corral it.

In those loud, chaotic times I will remember what it looks like when his anxiety and frustration have taken over. If I pause in that wild happiness with him, maybe some of that joy will spread. We just have to let go, even the tiniest bit.

img_8329

  1. Self-care. OK this is a tough one. I am going to put value on every single family member’s happiness, including my own. If you are like me, the recommendation of fitting more self-care into your already-hectic life is more irritating than hearing the Baby Shark song 50x a day. It is so important though. “You cannot pour from an empty cup.” I know, I’ve tried.

6.  When all else fails, find grace. I will be prepared for every IEP/ABA meeting, every doctor/naturopath/audiology/dentist/speech/OT/blood draw/psychologist/counseling appointment. I will bring social stories, snacks, incentives, and toys. And I will give myself grace when none of that stuff works like I had intended.

7.  Look back. I will continue to look back to where we have been so we can celebrate where we are now. Progress can feel slow and discouraging at times, but I will not get lost there and miss all the growth and amazing new things happening every day.

8.  Slow down. What’s the rush? I’ve been that irritated lady stuck in a slow checkout line. Or the one pulled over for speeding because I was running late. When I am pressed for time and irritable, it affects everyone.

9.  Be kind. One of the best things that has come from sharing my son’s journey in autism is seeing how he has inspired so much kindness in so many people. Because of him, I will always take a moment to consider what someone else is going through.

10.  Be thankful. My children have given me new perspective and I am blessed to have been changed in the most wonderful ways. I’m going to remember that when a snack gets thrown across the car or a well-intentioned social story totally bombs.

img_9106 (1)