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. 

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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!

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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!


Raising the Socially Awkward Extrovert

 

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Me! Pick me! I know! I know!

You know this child.

He pushes his way to the front of the line, to the front of the class, to the front row of the photo. His hand is the first one up, his answer shouted out before he’s actually called on. He sings the loudest, dances the most exuberantly, appears the most confident.

That’s my child.

I love him to pieces.

His desire (and demand) to be noticed is commendable.  How many of us would rather shirk in the sidelines?  He makes me proud on a daily basis for his passion and confidence.

He also worries me.

We all know this child is – let’s be honest – kind of annoying. He’s the one the teacher initially appreciates, but eventually gets frustrated with. He’s the one the other kids start to dislike because he comes off as a know-it-all and interrupts them constantly.

My worry is that my child won’t pick up on these social cues. He won’t realize when he should keep his hand down so others have a chance. He won’t realize he’s actually blocking someone else when he rushes to be in the front row of the picture. He won’t realize that when he’s shouting out answers, he’s actually disrespecting the teacher.

My son has autism. The social world doesn’t make a lot of sense to him. He wants to be a part of the world – oh, yes – but he struggles with how to do this in a way that respects others. He misreads cues. He assumes others know what’s in his mind.

As an example, he told me a few weeks back that “Johnny doesn’t like me.” When I asked him why, he said, “He doesn’t want to play with me.”

Yet, the very next day as I was dropping him off at daycare, Johnny walked right up to my son and said hello.

My son didn’t acknowledge him. I tried to ask my son why he didn’t say hello, but I couldn’t get him to look at me or respond. He had already moved on to the next task. My theory is that, in my son’s mind, he had said hello. He assumed that Johnny knew he was happy to see him.

But what happens when kids stop saying hello because they don’t get a response or even the acknowledgement of eye contact?

What happens when my son becomes more than just a boisterous little boy whom we can forgive because he’s four and simply becomes that awkward kid who’s always making a scene?

These are the thoughts that race through the mind of a mother whose child has struggles, but is brave and outgoing, nonetheless.

While nerve-wracking, I recognize there are far worse issues he could be facing.

But I’m a mother. Forgive me if I continue to worry.

What worries do you have for your child? 

 

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!

This post also appears on Sammiches and Psych Meds.


Lightning Bolt Underwear: why you need a pair

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Boy runs. Mom weeps. Parenting.

My four year-old son ran his first race: a 3K.

It started with a declaration to the lady handing out bibs and shirts: “I’m wearing lightning bolt underwear!” He was convinced his underwear would give him powers to run quickly.

They did.

When the bull horn went off, he took off like, well, a lightning bolt. Of course, it didn’t last long. He gassed out after a minute or two, and it wasn’t long before he was experiencing the grueling middle of a race that runners know so well.

But he persevered. Sure, he may have fussed, whined, even cried, but he worked through his unique struggles. He kept going, even though so many passed him by. He persevered.

When the finish line drew near, his adrenaline sped up as he realized he could do it.  The lightning bolt underwear’s magical properties kicked in and suddenly his feet took over. He wasn’t stumbling along – he was running! The crowd cheered as this skinny little boy – all elbows and knees – pushed himself to the breaking point, literally sprinting.

As I watched him near the finish line, shouting “Rescue Bots!  Roll out!” and smiling profusely, I couldn’t help but marvel at what a metaphor for his young life this first race was.  He starts every task with a firm belief he can do it. Often, the initial confidence transforms into anger, frustration, and self-pity, but with the right encouragement, he always perseveres, despite so many obstacles.

Naturally, once he did cross the finish line, he took the time to assume a super hero stance, flexing both of his arms.

The boy loves to show off the guns.

If there’s anything to learn from this little anecdote, it’s that everyone needs a pair of lightning bolt underwear, that tangible something that reminds us we can accomplish our goals, that nothing’s beyond our reach.

Did I mention my son has autism? If a race full of hundreds of people isn’t a recipe for sensory-overload, I don’t know what is.

I’m telling you: lightning bolt underwear.  Go get a pair.

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Happy Blogiversary!

Today I celebrate my blog’s one-year anniversary.  Over the past year, I’ve managed to post 40 pieces about my life, and in doing so, I’ve joined this cyber-world of bloggers I never knew existed.

It has completely transformed my life.

After years of remission, I can finally call myself a writer again.  After years of struggling how to understand my son, I have finally found a community to teach me how to be the best mother I can to him.  After a lifetime of harboring anxiety, I have finally found a healthy outlet to simultaneously laugh and cry.

To honor a year’s worth of writing accomplishment, I have chosen three pieces to re-share that I feel best showcase this year’s writing focus, as well as my growth as a mother.

“He’s a Bad Boy!”
As my very first post, this will always be one of my favorites.  It’s a personal anecdote about what motherhood was like before I knew my son has autism.

Typical Tuesday Night
While hard for me to read, this is one of my more honest pieces, void of any humor.  I wrote it immediately after the kids were finally in bed, so it’s a very raw account of why I have to write. Being the mother of a son with autism is tough.

What my Special-needs Son CAN Do
I’m most proud of this piece because I know I couldn’t have written it without this blog. Through writing about my experiences with parenting two young boys, especially my oldest, I have come to realize what a great gift my son’s autism can actually be.  I come back and re-read this post whenever I feel like I’m failing.

To my loyal readers, thank you for pushing me to keep going;  somehow, you manage to re-inspire me at the times I need it most.

To the newbies out there, I hope you can take something from my experiences to help you in your own life or, at the very least, get a little chuckle or nod of understanding.

Let’s see what the next year brings!

MommyCatharsis