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

 

Listen with your Heart

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Hearts have always been Wilson’s favorite shape.

Because of his autism and limited verbal skills, in all of his five years on this earth he hasn’t told me this, I just know.

He is drawn to them. He likes to build them by putting other shapes together and points them out whenever he comes across one.

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This makes perfect sense, with him being the sweetest little guy I know.

Sweet, and a little spicy, too. He is often in his own world, one that we are constantly working to understand, and I know he is working so hard to do the same.

The daily frustration he feels from not always knowing how to clearly get his wants and needs across just hurts my heart to think about.

Our constant prompts and reminders to “use your words” or “try again” are likely just as maddening for him as the desire to hear his sweet voice is for us.

We often forget that words aren’t what is needed, not what is missing.

For someone with limited eye contact (or, as the reports say, “poor” or “lack of”) he catches me by surprise when he sits and stares into my eyes with such a prolonged gaze. It’s like he is studying every single molecule in my eyes, lashes, and skin.

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He touches, smells, takes it all in.

I always wonder what he sees when he surveys me so intensely. He is probably just admiring his own tiny reflection mirrored back at him from my eyes. His reflection has always fascinated him.

Sometimes it feels like he is peering right into my soul. He is so full of wonder and curiosity. I know he can’t read my mind, though. He doesn’t seem to feel my fear and worry nor is he weighed down with concerns about safety, inclusion or health.

He is pure happiness, and I am so thankful for that.

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Simple things make him so happy.

He recently discovered our old DVD collection and has been carrying several around with him, his new treasures.

The other night, he repeatedly played the same DVD over and over again, always stopping and restarting after the previews had finished.

During the preview for Dumbo, the sweetest song called “Baby Mine” played in the background as Dumbo’s mother caressed, comforted and protected her baby. Wilson came over and gently stroked my face during this scene every single time he replayed it.

If you haven’t heard “Baby Mine” (by songwriter Frank Churchill), grab a tissue, here is a little glimpse:

Baby mine, don’t you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Little one when you play
Don’t you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine

If they knew sweet little you

They’d end up loving you too
All those same people who scold you
What they’d give just for
The right to hold you
 

Cue the tears.

This sweet boy may not talk much, but he is learning how to communicate in so many different ways every single day. He pays attention and interprets even the tiniest of details.

In that tender moment, I went ahead and let myself feel what I thought I had been needing to hear from him.

I love you. I am happy. I’m going to be OK. Thank you.

Truthfully, I don’t know why I thought I needed to hear these things. Wilson has been showing me all along, I just wasn’t always listening.

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Living in the Present as an Autism Mom

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“Is he going to be like this forever?”

My seven-year-old niece was quiet and hesitant with her inquiry.

Her mom and dad have talked to her about my son’s autism and I was thrilled when they told me that she had some questions for me.

I love spreading autism awareness. I especially love talking about my sweet boy and all of the unique, wonderful and challenging pieces that come together to make him so very special.

I could barely contain my excitement that someone so young was taking an interest in learning more about autism. I said, “Ask me anything!”

“Is he going to be like this forever?”

I wasn’t expecting that. I was certain she was going to ask why he doesn’t talk much, or listen to her, or why he lines up his toys over and over again.

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I started rambling on and on about how he will always have challenges and possibly be delayed for his age, but he won’t stay like this. I’m quite sure I lost her.

I do know that I avoided saying, “Yes.”

I often write and talk about how important it is to stay in the present when raising a child with autism. I don’t allow myself to think too far ahead when envisioning my son’s future. There is so much fear and worry about the unknown, the stress over it can send me down a spiral to nowhere. I try really, really hard to avoid this. But once a week or so, I have a meeting or conversation that forces me to think of my boy’s future.

The other day we were in a session with our OT, who I adore, she has been such an integral part of my son’s progress, treatment plans and my overall understanding of autism and what he is experiencing. We were talking about cognitive testing and upcoming IEP meetings and preparing him for kindergarten.

Kindergarten. I seriously say that word like I am allergic to it. I have so much anxiety about him entering kindergarten but that is a whole different spiral that I will save for another day. She mentioned something along the lines of “if he graduates high school.”

IF.

I had absolutely never put it in my mind that there was a possibility he would not graduate. I mean, look, I can’t bring myself to think as far ahead as kindergarten next year!

That thought stayed with me the rest of the day. These are the kinds of conversations that trigger that pesky spiral to nowhere. I shouldn’t have to be thinking about IF my son will graduate from high school. He is five years old.

I should be dreaming about him graduating and going on to be an engineer, a firefighter, a professional climber, whatever he wants to be. He can be whatever he wants to be. God, help him be something. He’ll be something. Let’s see, his interests are keys, eggs, pirates, and trains… and music! He could be a musician. No, some sounds literally hurt him. That won’t work. How will he even get to work if he isn’t ever able to drive a car. I can drive him. He’ll probably be living with us anyway. Maybe he could take a bus? No. No bus. I just can’t get old, or unhealthy or busy so I can take care of him. No one else can take care of him like we can. God, please make sure I stay healthy for my boy. I need to be here.

I share these thoughts with hesitation. I know some people would call this a pity-party or complaining. Call it whatever you want. I still want you to know what it looks like, and how quickly it happens. I know some of you know what it feels like, too. The fear, worry and anxiety that some parents face. The push-pull of telling yourself it’s ok and it really not feeling ok.

I kept the excerpt short, because I will not allow myself to stay in that rabbit hole for long.

Negative thoughts are exhausting and they take their toll. That’s why it’s so important to stay right here, right now and continue to grow.

I know my boy is going to do amazing things. He already has.

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