My Remote Control: a Metaphor for Motherhood

As I was reaching into the depths of our couch cushions to retrieve our tv remote, I felt a strange affinity for the trusty device.

My remote control is…

Always sticky, covered in God-knows-what-from-God-knows-where,

Constantly getting its buttons pushed,

Running on old batteries, yet still expected to get the job done.

My remote 

Endures temper tantrums when it doesn’t provide instant gratification, 

(and likes to hide in the bathroom too)

Has the appearance of control, but is merely a means to an end,

Is sleek and slim⁠—

Damn.

The metaphor was nearly perfect. 

So Your Seven Year-old Thinks You’re Lame

Oh, just me? Well, that’s nice. Nice for you anyway. Allow me to share my little anecdote anyway. Misery loves an audience.


My family makes it a habit of eating meals together as often as we can. The pandemic helped cement that routine (frantic runs through the drive through on the way to soccer came to an abrupt stop). For the most part, we’ve managed to stick to it.

This past Sunday, while we’re eating lunch, I say to my boys, “I have a great idea! Why don’t we play UNO after lunch? Doesn’t that sound fun?”

My seven-year-old smirks. “Nah, that sounds lame.”

I gasp. Lame? This, coming from the child who wants to be Charizard for Halloween?

(That’s a Pokemon in case you didn’t know. And consider yourself lucky.)

“That hurt my feelings, sweetheart.”

My oldest, at the ripe old age of ten, leans over to me and says, “To be fair Mom, he didn’t say you were, lame. He said your idea is lame.”

Thank you for clarifying that.

Through a large mouthful of mac ‘n cheese, my seven-year-old explains, “I’d rather just go play at the neighbor’s. Is that fine?”

“Of course it’s fine!” I cringe at the shrillness of my voice, a sound that says everything is not fine, you’re my baby, why are you doing this to me, don’t you love me?!?!

Meanwhile, somewhere above, < insert deity of choice > shakes their head. Are you kidding me? I thought you asked for this. I’m giving you peace and quiet. What more do you want from me, lady?

Sigh. It’s weird, isn’t it? How you can want something and not want something in the same breath? So often I’ve pleaded for a moment’s quiet, to stop hearing, “Mom” shouted at various decibels. But then, when the house is silent, it feels so…empty. I always knew this day would come: the day my kids would rather hang out with their friends than with me. I just didn’t realize it would be so soon.

I never got the chance to say goodbye to the little boy my son once was.

Later that night, as I’m tucking the boys into bed, I reach over to hug my seven-year-old, and he immediately pulls away. “I don’t want a hug!”

The stab to my heart is swift and deep.

“Okay,” I whisper, defeated. “A story?”

He ponders this. “Yes…but I get to pick it out!” He takes his time grabbing a book, then plops on the bed beside me, resting his head on my shoulder. I lean over, inhaling deeply.

Maybe he’s not gone just yet.


When have your little ones broken your heart? Seriously, I can’t be the only one! 

https://pixabay.com/vectors/heart-broken-patched-patch-symbol-48522/

Featured Image Photo Credit: Shimelle Laine on Flickr

Thank You To the Friends Who Have My Son’s Back

Having friends who support me is wonderful. 

But having friends who support my son with autism is invaluable.

I’m not hard to like. I’m not bragging. Honest! What I mean is, I generally don’t like conflict and want everyone to get along. I’m the person in the group who likes to laugh and tends to look on the bright side. I’m the person who makes sure everyone is included. Even as a child, if I saw a quiet kid in the corner, I’d go out of my way to ask them to join our group. 

My son? Well, he’s a different sort of beast. I love him endlessly and, being his mother, I get his affection most often. But he can be a lot to handle. Having autism, he struggles to see other’s perspectives and can be singularly focused. He assumes if he is passionate about something, you must be too. He’s fiercely competitive and painstakingly hard on himself and others. As a sensory seeker, he physicalizes his emotions, sometimes pushing and shoving (conversely, also giving the greatest bear hugs).

In short, he can be hard to like. Don’t get me wrong. He has friends. He can be a lot of fun. He has a big presence that many kids are drawn to, but that same big presence can be scary if it’s misdirected and misunderstood. 

He needs adults in his corner to help him navigate the social world, adults who support and appreciate him. As his school case coordinator told me recently, “He just needs to know there is always an adult in the building who believes in him.” 

She and I are on a hugging basis now. 

I realize how blessed I am to have a tribe of adults who genuinely love and support my son. A friend of his is a friend of mine.

Not all the adults in his life are supportive though. Some are naive and downright mean. My son has been shouted at, talked down to, and warned against socializing with to his peers. There are those who still believe it’s okay to be exclusive if a person doesn’t fit their ideal. 

But there are so many who don’t prescribe to that “mean girl” mentality. And that’s who this post celebrates. 

Case in point: this past Halloween, I received a call from my son’s school informing me that he was feeling sick. He was overwhelmed by the chaos of the day and knew, intuitively, the party and costume parade were going to be too much. He also revealed to me that the face paint on his peers’ faces made him feel nauseous. He literally couldn’t stand to look at them. He has always had an aversion to face paint, but it was pronounced this season.

My stomach dropped. Our neighbor (who is quickly becoming one of my closest friends), her husband, and their two kids traditionally went trick or treating with us.

This year, both of them were wearing face paint.

I had to make a hard choice. Force my son to face his fears, knowing a meltdown would likely occur, or let my friend know we couldn’t trick or treat with them this year, at the risk of hurting her feelings and our friendship. 

I chose to tell her the situation, and she couldn’t have been more supportive. She let me know it was okay and that I shouldn’t feel bad at all. In fact, she inquired about him throughout the day to make sure he was feeling alright and still having a fun Halloween.

This might seem like a small moment, but it holds a big place in my heart. 

My son had a great night because of a friend who had my back and my son’s back as well.

So thank you. I am fortunate to have quite a handful of people who support and genuinely love my son, and I don’t thank you enough. 

And to those of you reading this who have children with special needs, I hope that you have at least one friend who is a champion for your child as well.  

If not, I’m available. 

SensoryBlogHopNew

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

You are invited to the Inlinkz link party!

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I’m Published!

A childhood dream is coming true today. I have the honor of being published in Jen Mann’s newest anthology, You Do You.

You Do You is the sixth book in the New York Times best selling I Just Want to Pee Alone series, which has tackled a variety of topics since 2012 – including parenthood, relationships, and the cult of female perfection – all with a broad range of voices, from the cynical, to the ugly-cry, to the outright hilarious.

My personal narrative shares the story of how I helped my best friend give birth to her first child. Guess what day he was born? September 28th. Yep. If that’s not serendipity, I don’t know what is.

I encourage you to buy the book, give it a rave review, and encourage all the other women in your life to do the same. Join our rally cry – You Do You!

Get your copy today!

Amazon
iTunes
Nook
Kobo  

you do you cover

My featured blog post on “Every Family’s Got One (a story that is)”

Hello everyone! I invite you to check out the heartfelt blog Every Family’s Got One (a story that is). This site is run by two amazing women who feature real stories about real families.

Today, they are focusing on a piece I wrote two years ago when I was really struggling with my son’s diagnosis, “Autism Still Lives Here.” 

These ladies will also be doing a live Facebook chat at 10:30am (Eastern Time) about the piece if you want to check it out.

Thanks for stopping by!

When Your Child Says He Wants to Die

He’s seven. He stomps down the steps of the school bus carrying an elaborate Styrofoam leprechaun trap. The bright sun and blue skies are in stark contrast to his moody face. His eyes meet mine for a fraction of a second, then he drops the Styrofoam contraption. He rears his head back, throws his small body into a nearby parking lot space and begins to howl.

Meltdown mode.

I’m used to meltdowns. My son has been having them since he was thirteen months old. Years of practice have made me an expert at identifying his triggers to prevent the meltdown altogether or waiting him out until his flailing-limbs storm can pass.

This time, his meltdown is the result of frustration at breaking one of his styrofoam cups while getting on to the bus. He is a perfectionist and incredibly hard on himself (inherited traits) and after putting hours into this elaborate trap (truth be to told, it was pretty cool), having it get damaged was simply unacceptable.

As I try to calm him down with soothing tones, I am also calculating how much time I have before a car pulls into the exact parking space he is flailing in. With a sense of urgency, I scoop him up, set him into our car, close the door, then take a very long breath before I join him in the backseat. I sit. I wait. After about twenty minutes, he is ready to listen and ready to talk and we continue on with our day.

As I said, I’m used to meltdowns. What I haven’t grown used to are his piercing words.

“Just kill me! Please! I want to die!”

I’ve heard these words before.

He was five the first time he told me wanted to die.

This is not “normal” for neurotypical kids. I found that out rather quickly when I asked friends if their own children had ever said this.

A resounding no, followed by incredulous looks.

Nothing can prepare you for these scary words coming from the mouth of someone you would gladly give your own life for.

My mother’s intuition assures me he doesn’t literally mean what he is saying, but the small speck of doubt prompts me to seek help. My son’s life isn’t something I am willing to take lightly.

We are fortunate enough to live near a reputable pediatric psychologist who specializes in neurodevelopmental diagnoses. He is someone our son truly enjoys talking to (that, and playing with the amazing arcade in the waiting room chock full of classic video games).

After the “leprechaun trap meltdown” (which failed to catch a leprechaun, but succeeded in capturing a few dropped coins from the leprechaun’s pocket), I find myself sitting in this psychologist’s office, sharing the story with him, worry etched on my face.

Without a moment’s hesitation, he says, “That’s very common in ASD kids. When they say they want to die, it means they’re sad. When they say they want you to kill them, it means they’re very uncomfortable and need a break.”

Speechless. An audible sigh of relief. “Can I get you to write that down?”

He continues. “Kids with ASD feel emotions on such a strong level that they are quick to react, both verbally and non verbally, and often in inappropriate, scary ways. The goal for you is to teach him to say the words that convey what he really wants. Teach him to say, ‘I feel sad’ or ‘I need some space because I’m angry.’ It’s not easy, but it can be taught.”

I am silent for a moment.

“Okay.”

I give my son an extra big hug that day (I want to give his doctor one too, but I settle for a smile and a thank you), renewed with the knowledge that he is going to be okay. That while we we are working through another autism milestone, we are not working through it alone.

I share this story with you in hopes it will provide you with some relief. Relief that if your son or daughter has said these scary words, that they are going to be okay too.

I also want to remind you to always trust your parental instinct, but don’t be afraid to have it affirmed by trained professionals, especially when the concern could be life-threatening. Share your fears with someone else so you don’t have to carry the burden of worry alone. Peace of mind is a beautiful gift.

Okay. Time to go give my little man another big hug.

SensoryBlogHopNew

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!

How a Seven-Year-Old Can Educate the World: #ShareYourAutism

My seven-year-old son recently asked me how many surgeries he had to have before we realized he had autism.

It was a reminder to me of how little any of us really understand autism. In truth, trying to explain his diagnosis to him was hard. It’s so, well, open-ended. It’s a spectrum, right? People hear the word autism and picture a puzzle piece.

During the same conversation about the amount of surgeries it took to determine his diagnosis, my son told me he met a boy whose brain worked differently too. He has…hamburger something?

Aspergers. Which isn’t technically a diagnosis anymore.

And the confusion builds…

What does autism mean?

The prefix “auto” means “oneself” and the suffix “ism” is used to create action nouns, so the term literally means, “to retreat within one’s self.”

In 1908, the term was created by Eugen Bleuler to describe his withdrawn schizophrenic patients.

In the DSM-V, it’s categorized as Autism Spectrum Disorder 299.0.

The Oxford Dictionary defines it as a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

What does autism mean?

Here’s what I know.

My son has autism, so it is a word that is very personal to me. Even more so to my son. He wants to understand. Ultimately, I can only share with him what limited knowledge our medical field currently has while they continue to test hypotheses and make claims that may or may not be accurate.

So we wait…

In the meantime, what we all have, are our stories. Stories of our own experiences with autism, whether it be directly or as a loved one.

My son, at seven years old, had the courage to share his story to his entire first grade class. With help, he created a Google Slide Presentation, read from it using the classroom’s Smartboard, and answered questions from his peers. He even redirected the class when they got a bit off-topic (Who’s your favorite Pokemon?) by moving back to a specific slide and asking, “Okay, who has a question about autism?”

In our house, autism means being brave.

What raising a child with autism has taught me is that we shouldn’t avoid talking about it. We shouldn’t be embarrassed or afraid; autism is another way of thinking and viewing the world. It may look differently or feel differently or act differently from what our society views as normal, but that doesn’t make it less. In fact, as I’ve come to learn, it makes life more.

I ask all of you, not just this month of Autism Awareness, but from now on, to not be afraid to talk about our differences with our children. If you don’t know the answers, let them know. Then go find those answers with them. If you shy away from the hard questions – What’s wrong with that kid? Why is he spinning around and flapping his arms? – you are inherently teaching them that what they see is something to be afraid of. Fear stems from a lack of knowledge.

Sharing stories can ease that fear.

My son, and so many others like him, are a living symbol of autism. It is a badge of honor, as well as a heavy burden. I ask all of you to lighten his load. Accept him. Love him. Embrace him.

Continue to share and to listen so the stigma and fear and frustration surrounding autism can fade.

My son did.

So can you.

#ShareYourAutism

My son’s presentation (modified for anonymity)
Please feel free to modify and use!

 

This post also proudly appears on The Mighty.

Being Brave

Four years ago, my son was diagnosed with autism. He was three. It was scary and confusing and very lonely.

Four years ago, I started this blog. It brought me both relief and compassion as I learned with other parents how to understand and help my struggling child. I learned how to laugh and to cry at my mistakes and misunderstandings. I had found my tribe.

Then I stopped. It’s been nearly two years since I last posted and I’ve spent much of that time grappling with why. Busy with work. Busy with raising children.

Busy being afraid.

Two years ago, I posted something heartfelt, and it was received with heartless comments. Many a blogger friend had told me not to bother reading comments at all for that very reason, but my temptation was too strong. In retrospect, the comments paled in comparison to some my blogger peers had endured, but it was the first time I wasn’t received with open arms. It hurt because the negativity was directed towards my son. Strangers claimed that he should be institutionalized, that he was a danger to other children.

It scared me so much that I asked Scary Mommy to change the author name to Anonymous. Then I never looked at that post again, and I put my blog – my writing – to rest.

Two years went by.

Then this past December, something stirred within me. I was in my son’s first grade classroom, watching him present to his peers what autism is and that he has it.

At seven years old, my son is one of the bravest people I know.

A few weeks went went by, and I couldn’t shake the feeling that I needed to write, to share my son’s extraordinary story, but I wasn’t ready yet to let that fear go. It manifested itself into anger. Carrying the weight of all these stories wore me down; I found myself snapping at my friends, my coworkers, my students, my husband, my children – myself.

Then something extraordinary happened.

I attended my son’s annual IEP and was overwhelmed with pride at all the success stories his teacher and support staff shared. At one point, his social worker said, “He is already such an advocate for autism!”

It stopped me in my tracks. “Yes,” I said with a smile. “Yes, he certainly is.”

If my seven year-old son can be brave, so can I. It’s time for me to start advocating for him again.

Someone I greatly respect told me recently that I need to make writing a necessary part of my day. Treat it like taking a shower or brushing your teeth. Writing is an integral part of who you are as a person.

So I’m writing again. I can’t wait to tell you everything you’ve missed these last two years. From learning about his diagnosis to defending himself against a first grade fight club, I can’t wait to share how brave and beautiful my son is.

I can’t wait to share my story – the story of being his mother – with you.

Stay tuned.

Oh, and here’s the post that once scared me that I now proudly share: An Open Letter to my Son’s Preschool Class.

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Autism Still Lives Here

Autism still lives here.

I want it to leave.

I’ve tried taming it, coaxing it, encouraging it to move on. For awhile now, I thought it listened. So sure was I that it had vacated the premises, I made comments like, “I’m not so sure he even has autism,” and “Was the diagnosis even correct?” These comments, more often than not, have been met with sympathetic looks or avoidance of eye contact altogether, making me more angry and determined to boot Autism the hell out.

Those of you who have housed Autism for years probably think I’m ridiculous. How could I believe that Autism would simply go away?

Denial.

But I’m coming ’round.

Two years ago, when we received the formal declaration that Autism was making itself a permanent resident in our home, I did everything I could to make it comfortable. Hours of research, reading, phone calls, therapy sessions, doctor’s visits, and social skills classes ensured we could co-exist.

We got used to, even comfortable with, each other. I found myself forgetting Autism was around. I stopped giving it attention. Books got dusty, testing stopped, therapies started to wane, my writing came to an abrupt halt.

No one likes to be ignored.

Autism began following me. It would whisper in my ear at night, sometimes slipping casually into conversation with acquaintances and co-workers. It would manifest itself in my students, or appear on TV. It would proclaim itself loudly in the words of therapists and teachers and principals. It would blindside me in books read purposefully for escape. It defied my denial; it demanded my awe.

Autism still lives here. It reminds me of it constantly.

Autism likes to argue with me, rigidly refusing when it feels I have lied.

Autism likes to scream and hit and sometimes bite.

Autism doesn’t like to look me in the eye.

Autism likes to confuse my son, making it nearly impossible for him to understand his peers.

Autism likes to make my son feel overwhelmed, causing him to swing his arms and bump into walls.

Autism likes to make my son feel clumsy when he can’t catch a ball.

Autism likes to make my son feel stupid when he can’t get things right the first time.

Autism makes my son cry.

I hate autism.

“Mommy, we don’t say hate.”

“Sorry, honey.”

Autism.

If I say the word enough, will it lose some of its power?

Autism, Autism, Autism.

We never know the words we will collect along the way, the ones which will forever reside within us. Autism is one of mine. I’m sure you carry your own.

Autism: a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Autism: a resident in my five year-old’s mind.

Autism still lives there.

And I am still adjusting.

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Public Domain Photo

This post also appears on Sammiches and Psych Meds.


 

 

 

 

 

ASD, SPD, WTF?

I’ve been grappling with something.

Does my four year-old son really have autism?

It’s not an easy question to answer. The umbrella seems rather wide, and my son has just squeaked his way under it. He can’t always find protection from the rain; part of him is perpetually sticking out.

There are moments when his imaginative play is creative and his language so articulate, I find myself scoffing at the diagnosis.

Then he licks the restaurant table.

There are moments when he shows intense empathy for his younger brother, and a true desire to play with him.

Then he knocks him off the couch.

There are moments when he gets so excited about a play date with a friend, he’s literally jumping up and down.

Then he spends the time playing by himself.

Just a few days ago, he was snuggled next to me on the couch watching TV. Then, suddenly, he was jumping on me, clawing and biting.

What is this?

Is it autism? Is it sensory-processing disorder? Is he simply an active aggressive child?

Does it matter?

Yes….and no.

Yes, it matters in that the label of ASD has provided us with therapies to help our son that insurance wouldn’t otherwise cover, as well as the opportunity to participate in programs that require a label to attend. It’s provided our son with an IEP that has been instrumental in bridging the communication between home and school. It’s allowed him to participate in a special needs preschool with a teacher that truly changed his life for the better. It’s providing us with a solid plan for when he starts Junior Kindergarten this fall, to ensure he has the best start possible.

Yet, I still find myself struggling with the label, wondering if it truly depicts my son. In my heart, I know it doesn’t. This label of autism felt all-consuming when it was slapped on him last year, but now, it feels like such a small part of who he really is.

Impulsive, creative, active, intense, aggressive, sensitive, funny, sensory-seeking, compassionate, competitive, energetic, autistic — these are just some of the words that describe my son.

For now though, I’ll take the label.

Do you ever struggle with your child’s diagnosis?

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month’s Sensory Blog Hop? Click here!