My friend told me once that I could find the silver lining in anything. Here’s a big one that I’ve found: Being the parent of an autistic child has humbled me and made me a better parent. Specifically, I’ve stopped caring about what strangers think about my parenting skills. It took me a lot of searching to find that particular silver lining, and it wasn’t easy to find.

Sometimes Bella can’t handle all the people at the store.  Sometimes she doesn’t want to leave the spring fair at the elementary school.  Sometimes she can’t share or take turns the way other kids can at her age.  It could be anything or nothing at all.  But her reaction is often huge, her meltdowns epic, and when they’re public meltdowns, well, you can imagine how fun that is.  I’ve been screamed at full-blast in Target over a toy I didn’t buy.  I’ve had to coax an anxiety-overloaded child off of the floor at Jo-Ann Fabrics because she’d just had enough.  I’ve left parks carrying my child like a sack of potatoes kicking and screaming because she wouldn’t leave any other way.  I’ve been slapped, scratched, kicked and almost bit while strangers watched (or pretended not to watch, but lingered just a little too long to leave any question as to whether they were shopping or watching).

It’s not always meltdowns, though.  Sometimes it’s just all the quirky things you don’t notice around the house that are glaringly obvious when you venture out into the real world.  I had to tell Bella once that no, not everyone in the store thinks it’s funny when you stand in front of their cart, put your hand up, and shout, “STOP!”  Also, kids tend to notice when your daughter licks every doorknob in the hallway at morning drop-off.  Here eccentricities are amusing at home but were mortifying in public.  I found myself saying, “No, Bella…” the entire time we were out, which only aggravated me and put her on edge.

I used to walk out of public places feeling embarrassed and humiliated.  Partly because of how my child behaved, but also partly because of how I behaved.  So often, I found that I was parenting for the benefit of those around me.  I felt their eyes watching me, judging me, and so I would perform for them.  I said what I thought I “should” say, what I thought people were expecting me to say.  Instead of calmly and patiently waiting for Bella to cool down before talking to her, I would jump the gun and reprimand her when she wasn’t ready to process what I was saying.  I would speak harshly to her so people could hear that I was in charge, that I was doing the “right” thing — even though the “right” thing for Bella doesn’t look or sound anything like what the “right” thing might be for other kids.

My worst parenting moments, the ones I am least proud of, happened because I was trying to impress a bunch of strangers I’ll probably never see again.

One day, after a particularly awful meltdown at the grocery store, I was driving home and had a simple but important thought flash in my head:

I’m not responsible for those people.

I have no control over those strangers’ reactions toward or perceptions of me.  To put it simply, who the hell cares what those people think?  The only people’s opinions that matter, the only people I am responsible for are my kids.  I’m only beholden to them.  I care about what they think of me, and how they feel.  No one else.  Those lingering people in the store can just piss off.

Once I stopped trying to impress strangers, my life got a whole lot easier.  I don’t worry about what people will think of Bella and her behavior in public anymore, because I seriously don’t care.  I focus only on my kids and how they’re feeling. If they’re happy, I’m happy.  If they’re upset, then we deal with it the same way we would deal with it at home.  Sometimes that means I have to stand in the store and wait a minute for Bella to pull herself together.  Sometimes it means I have to stay calm and not react when my daughter tries to claw my arm.  I know it’s because she doesn’t know what to do with the overwhelmingly intense feelings she’s experiencing, and reacting physically towards me is the only way she knows how to deal with those feelings.  Other people don’t know that, but I don’t have to explain myself to them.  If someone says anything dumb, I ignore them — I literally pretend they’re not talking.  If someone lends sincere help, I accept or decline politely (depending on whether it will make things better or worse, in my opinion).

People stare, and I’m sure some people go home and judge the hell out of me.  Why should I care?  I get to go home and feel good about how I treated my children.

My girl’s opinion of me means a whole lot more than your opinion, lady.

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ABOUT JANEL: Janel Mills is the librarian/thug behind the blog 649.133: Girls, the Care and Maintenance Of, where she writes about raising a princess, a wild child, and the happiest toddler on Earth using as many curse words as possible. Janel is a contributor to NickMom, and has also been featured on In the Powder Room, Scary Mommy, and was a contributor to the wildly successful anthology “You Have Lipstick On Your Teeth”. When not blogging or librarian-ing, she keeps busy raising three beautiful little girls with her beardedly gifted husband in the wilds of metro Detroit.

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The post Parent Like There’s No One Watching first appeared on BonBon Break.

He was the Baby Who Did Not Sleep. He was the Toddler Who Did Not Stop Moving. He was the Boy Who Was Loud. He was the Boy Other Parents Talked About.

He was unpredictable. He loathed the things we’d thought he’d love. He didn’t talk. He didn’t stop talking. He didn’t want to be held. He only wanted to be held. We begged “How do you feel? What do you want? What’s going on?” but he only twisted in on himself or gave us the answer he thought we wanted. “I’m HAPPY!” he’d scream, fists curled and body shaking. We provided our explanations for this boy we could not understand by pulling things from various incidents (he was tired/he was hungry/he’s sensitive/he’s spirited/he’s anxious/I didn’t like that person either/that pasta was shit). We knew we weren’t seeing him, though he was right there, and we just weren’t getting it. While I loved him more than I could ever imagine loving anyone ever, unease was strumming through our relationship. Then one day I Googled Autism Spectrum Disorder, and the penny dropped. Boom.

In some ways, his diagnosis was nothing to do with him. He continued being himself, just as he’d always done. It was my husband and me who benefitted. Finally, we could see him. We weren’t so much handed a letter of diagnosis as a letter of “Hey guys chill the hell out, this is your kid, and he’s fine, he’s just autistic.’ We stopped freaking out about dinner not looking like eating hot food at the table altogether, and accepted that dinner looked like rolling around the floor eating frozen peas. I stopped trying to have endless conversations about his feelings and started looking at what his actual communication was. He was still fire, and power and passion, but I was no longer tense. I got him. I finally understood my child.

We told people. Some people were surprised, and others were highly unsurprised. The day we got the official diagnosis we made him a cake to celebrate his different brain. It was not all cake, though, the more I researched and the more people I told, the more I was informed I had no right to celebrate my autistic kid.

We were told to expect a neurotypical child, and that anything less was a loss. We were told that disability was scary and that having a disabled child was worth grieving over. We were told his future was uncertain, that autistic people struggled with finding relationships and jobs. We were told he would be shunned, or bullied, and that we should be grateful if people remained our friends in spite of our child. We were told most people would leave. We were told we would be lonely, our family damaged. We were told he would never fit in and needed to be rescued. We were told we were bad parents. We were told he didn’t look autistic, and all he needed was discipline. We were asked “Do you really want to tell people? Do you want to label him, with all of THAT?” That being all the ways society would see him, all the deficits my beautiful four-year-old apparently had.

Yes, we said. We do. Sign me up bitches.

All of that crap is exactly why we labelled him. Because it’s time for all of that crap to be gone, and that can only happen when we know exactly how wrong it is. Everyone else needs to get the chill the hell out letter too – it’s not terrifying, it’s not awful, it’s just autism, and it looks like a bunch of different things because it’s a bunch of different people who are doing different things. Not one of those people is wrong, or inferior. We need people to see the proud parents of autistic kids, the happy autistic adults and the thriving autistic family – all of which exist in abundance.

Labels happen; I want to make sure my son gets the right one. I want him to get the label that empowers instead of the one which shames. I want him to know he’s autistic, so others don’t tell him he’s broken. I want my kid to wield that label like a weapon. He knows he’s different; he shrugs when classmates watch him bear-walk into the room “Sometimes I just do stuff like that” then they shrug too, and the world resumes spinning. The power of diagnosis is knowledge, he knows that part of the reason he is so valuable, and loved, and ridiculous is because he’s also autistic.

I have a favourite quote (yep, I’m totally that person), and I always thought I understood it perfectly. It has more meaning now.

“There is a vitality, a life-force, an energy, a quickening that is translated through you into action, and because there is only one of you in all of time, this expression is unique. And if you block it, it will never exist through any other medium, and it will be lost. The world will not have it.” -Martha Graham.

I don’t want my boy to think that what he brings to the world is not as valuable because of his neurology; I don’t want him to block it because then it will be lost. Gone. I want him to keep his fire, his power, and his passion;  and I want him to have the right label while doing it.

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The post We Are Okay With the Autism Label first appeared on BonBon Break.

Gordy has been progressing with Rapid Prompting Method (RPM) and is now using a keyboard to help him listen to lessons and answer questions about them. He has been able to express himself in ways that are unbelievable. There is an Autism Safety Fair for Montgomery County and during one of his sessions, Gordy was asked if he wanted to write a letter to the police officer in charge of the event.

Evan/Dara/Gordy,

Shared with permission from Evan Baylinson.

The post Here’s What a Teen With Non-Speaking Autism Wants You to Know first appeared on BonBon Break.

You’ve probably laughed along with them or nodded your head in agreement.

X Number of Things Not to Say to a Mom . . with a child with special needs, with autism, with twins, with all boys, with all girls, with pick any defining characteristic and you’ll probably find a list.

Because April is Autism Awareness Month and I have a son on the spectrum, I have a few things to say about those types of lists. And it mostly involves throwing them out because it’s usually not so much about what you’re saying, but how, when, and why you’re saying it.

YOUR TONE MATTERS.

• What’s wrong with him?

Imagine that question being asked with the eye-rolling, screwed-up-facedness that I hope is giving the asker serious wrinkles; loud, accusatory, head-shaking tone, with a lot of emphasis and dramatic pauses. It’s often shouted across a large area, attracting others’ attention, making them turn and see what is going on, and awaiting your answer. WHAT…is…WRONG…with him? 

And you’ll see why that is a clear contender for a what never to say list.

But now imagine that the asker is sitting near the mom, and she quietly asks, with a concerned look on her face or with a caring tone of voice, What is wrong with him? It might not be the most politically correct phrase around, but it’s direct and I get what you’re asking. I know that unless you are in the alphabet-soup world of special needs parenting, you don’t know all the terminology, and you’ve never thought about what way you should ask such a thing. Your tone tells me what you’re really asking.

YOUR TIMING MATTERS.

• Why does he do that?

Even with the gentlest tone, if you ask this in the middle of what you can see is a very stressful situation, it’s going to be stressful. You can’t expect a calm, rational, polite response when clearly that mom is busy dealing with something. Think of it like your preschooler asking you for a snack while you’re in the kitchen making dinner, or while on a work conference call,, and suddenly the living room rug catches fire. It’s not that you mind answering your preschooler or giving them a snack, but it’s just not the right time.

Ask later. In a kind tone of voice, of course. And not in the middle of a huge group. I love to give speeches – I don’t even need a microphone to project my voice. But if you catch me unaware in a large group of other people, most of whom are only listening in because they’re right there and not because they actually care, I’m not going to answer you. No one wants to broadcast personal family information like that. No, not even those of us who write out our lives online. 

YOUR MOTIVE MATTERS.

Why are you asking what you’re asking? Are our kids playing together or in the same class or on the same team, and will be around each other a lot? Or even if it’s not “a lot” but they are together some and interact. Do you see something that concerns you about my child’s safety or your child’s safety? Do you see something in my child that reminds you of yours or of another child that you’re close to and you want to understand? Do you just want to understand more about autism or maybe you aren’t sure what it is, but you’re just a compassionate person?

Ask. In a kind tone, at the right time, ask.

But if our kids aren’t spending any time together or if they’re just briefly crossing paths where mine is on one soccer team and yours is on the opposing team, and my child isn’t doing anything to yours or anyone else but you just note a twinge of otherness, and we’ll never see each other again after this short game – consider why you’re asking. I’m there to watch my child play and unless there’s an actual issue, please just let me watch the game. Again with that timing thing.

If you happen to be asking because you’re nosy and you want to be able to go run back to your little group of friends and gossip? There’s not a right time for you to ask, ever.

I’M JUST TRYING TO PARENT.

There are many moms out there who do a phenomenal job at spreading autism awareness. It’s so ingrained in them, in everything that they do. This isn’t me. I have no problem talking about autism when it’s relevant to the conversation or what is happening or what my son is doing or why he needs certain things.

It’s part of who he is, it permeates most everything he does. But it’s not his only defining characteristic, not by a long shot. So, when I talk about him, “my son with autism” doesn’t always make its way into the conversation. It could just be “my son” or “my middle son” or “my 8 year old” or “my son who just made that basket” or “my son who kicked his reading level goal squarely in the ass.”

I’m not trying to hide it or act like the “with autism” part isn’t there. But it isn’t all of him and I’m over here just trying to parent. So, sometimes I don’t talk about it. But you can still ask if you have questions. Ask me, ask another autism parent – I think most of us really are understanding. We’ve learned it from our kids. Really, there’s no hard and fast rule about what you should and shouldn’t say, but think about your tone, timing, and motive, and just be kind.

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The post Ditch The “Things Not To Say To Moms” Lists first appeared on BonBon Break.

Last week I was surfing the Internet and came across a headline proclaiming autism and circumcision are linked. I couldn’t help myself. I laughed out loud.

In no certain order, I have read the following explanations for autism over the years:

Autism is caused by mercury.

Autism is caused by lead.

Autism begins with poor maternal bonding.

Certain pesticides may trigger autism.

Plastics.

Gluten aggravates autism spectrum disorder.

People with autism should eat more strawberries.

Too much automotive exhaust is a leading cause of autism.

Chemicals found on non-stick cookware may trigger autism.

The one about maternal bonding is sort of painful for me. The truth is, I did have a hard time bonding with infant Jack. The little guy shrieked and whined and cried for a solid year. He started sleeping through the night at six weeks, and stopped at three months.

I was exhausted, and Joe and I were fighting constantly; bickering and arguing and long screaming matches. For the first time, I could feel my marriage slipping away from me like sand through my fingers.

And my first child, Joey—sweet, uncomplicated, good-natured Joey—was a year old at the time. His easy nature only highlighted his new brother’s fussiness.

But I am certain there is no one on earth more bonded to this boy now, and guess what? He still has autism.

I am happy to announce that I do know what caused Jack’s autism, and without further ado, I’d like to tell you.

Wait for it.

It’s kind of a big deal.

Drum roll, please.

Jack has autism because, as his 5-year-old brother Henry says, he was bornd-ed with it.

Yes, I believe autism is a genetic condition. I believe that somehow Joe’s DNA mixed up with my DNA and together we had a child who thinks Wednesday is orange. Perhaps his unique genetic coding makes him more sensitive to things in our environment like lead and mercury and plastic.

I don’t know about the strawberry thing though.

(For years I blamed Joe’s side of the family for the autism gene. But a few years ago I went to a funeral for someone on my side of the family, and I looked around the room and was all likehmmmmm.)

I was in a coffee shop last week and a woman came up and introduced herself to me. She said her daughter, Lily, is in Jack’s fifth grade class. I nodded and smiled, took my cup of coffee—ok, ok, and my cupcake—from the counter and turned to leave.

“Wait,” she touched my arm. “I just wanted to tell you something. Lily told me that a boy called Jack weird the other day in class.”

I cringed. “Oh, well, yes. That happens.”

“Lily said she told the boy that Jack isn’t weird. She told him he’s exactly the way he’s supposed to be.”

You can see my dilemma. If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.

This fragile glass house we’ve been working so hard to build over the past decade will explode into a thousand tiny pieces.

But on the other hand, it sort of is an epidemic. Other families are going to have babies and maybe they would like to have some idea of how to prevent this tricky spectrum disorder from striking. My own children will have their children, and if autism is indeed caused by automotive exhaust, it would be good to know so we could all buy electric cars.

At the same time, I don’t want to focus so much on the what and when and where and how that I forget about the who.

Because I don’t care where it came from.

But I am kind of curious.

It doesn’t matter to me why Jack has autism.

But it might be good information to have.

There’s nothing wrong with him.

Maybe there’s a little something wrong with him because he just spent the last forty-five minutes talking about all the different kinds of gum that Wal-Mart sells.

I wouldn’t change a thing.

I might change a few things.

I celebrate autism and all of its spectacular wonder.

I hate autism because it makes my son talk about gum and Wal-Mart so much.

He is broken.

He is whole.

Autism is no one’s fault.

Maybe I should stop using Tupperware and make him eat strawberries even though he hates them and re-paint the house to make sure there is no lead on the walls or the windowsills.

Maybe I should throw away our frying pan.

Maybe I should have loved him harder, deeper, more when he was a tiny swaddled baby squirming in my arms.

Maybe this is my fault.

As you can see, my feelings about Jack’s autism diagnosis are as complicated as a prism with a thousand colors and angles and light. Some days, my doubts are soft whispers within my heart, other times it’s as though someone is shouting in my ear.

I am not a scientist. I am not smart enough for that. But I am a mother. And although I am not really smart enough for that either, I do know autism from that angle. I know the rigidity and the obsessiveness and the rage over having an aide in school. I know the disappointment and the fear. I know the quiet longing that comes with being different or weird, because I see it every single day.

When you live with someone who has autism, you say the phrase for now a lot.

For now, the radio is on the right station.

For now, he’s not screaming.

For now, he’s sleeping.

For now, he’s safe.

So, for now, I’m going to believe Jack’s autism is because of DNA and RNA and heredity.

For now, I will try to add broad splashes of green and blue and purple and orange to science’s black and white brush strokes. Together, we will fill in autism’s canvas until a clearer picture comes forward.

I don’t know exactly what that picture looks like yet, but I like to imagine it is a utopia of sorts; the perfect intersection of science and people. There are strawberries and puppies and lots of peppermint gum in Wal-Mart, the kind in the blue container.

There are tall, blonde girls named Lily and boys with glasses named Jack.

And if you look hard enough, you can see a glass house in the distance—almost on the horizon. It glints and sparkles in the sunlight, and it is breathtaking.

If you look closer, you will see a sentence etched into the front door. This one sentence—this collection of eight words—well, they are very, very big.

They are a shored wall against a flood of uncertainty.

They are a million bright stars in an otherwise long, dark night.

They are peace and forgiveness, power and pride. They are everlasting absolution.

The first time I heard them, I was in a coffee shop buying a cupcake.

“He’s exactly the way he’s supposed to be.”

This post first appeared on Carrie Cariello

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The post I Know What Causes Autism first appeared on BonBon Break.

If I heard the word “low” one more time to describe my son’s cognition, his potential, the outlook for his future – I was going to scream. I balled my hands into fists and dug my nails into my palms to release some of the mounting tension I was feeling.

This was the moment, I could sense it coming – I waited for the doctor to say that word, that magical word that would crush me… “Autism.”

And she did.

And I was okay. No, I wasn’t okay. But I wasn’t crushed either. I wasn’t diminished, and I wasn’t going to let this one word diminish him either. I was pissed. I wasn’t going to let a word take anything away from my boy, our family, our life. Suddenly, the word “low” turned into fuel for my anger, for my resolve to protect my son.

Instead of saying “Why him, Autism?”, I said “Screw you, Autism”.

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The post Screw You, Autism by Our Stroke of Luck first appeared on BonBon Break.