Look for the Helpers

Last week the Internet exploded with the news of Robin William’s untimely passing.

I liked Robin Williams and I thought he was funny. My favorite movie is probably Mrs. Doubtfire, and Joe and I watched his creepy turn in Photo Booth and ate pad Thai on our old brown couch in Buffalo. I could hardly sleep that night.

So here and there I read blog posts and articles about his struggles and success, addiction and sobriety. But  I was taken aback to see the conversation quickly turn from grief and disbelief to a discussion about depression and medication.

A lot of people, it seems, have an opinion about medication.

My ten-year old son, Jack, is on medication. Without it, the child wouldn’t be able to put one foot in front of the other before his anxiety got in the way and told him to check the wind chill factor.

See, one day when Jack was six, anxiety hit him like a ton of bricks. It felt like he went to bed snuggled under his blue and red plaid quilt one night, and woke up in the morning a different child altogether.

He was afraid of the toilet. He was afraid it was too cold to go outside. He was afraid of the wind, of dogs, of spiders, of the rushing water in the shower. He lost potty training and had accidents all day long.

He started talking to himself, gesturing and pointing and frowning at some invisible person. If we asked who he was talking to, he’d look over slowly with vacant eyes, drop his finger, and walk away.

For six weeks, he never smiled or laughed or giggled. And we were frantic.

I’m sure there were warning signs we missed, little telltale clues that should have tipped us off. But we missed them, and spent the better part of two months battling a storm raging within our young son’s mind and heart.

We struggled for months trying to decide if this was right for us—for him. We explored alternative methods for reducing his anxiety; something called the Wilbarger brushing technique, joint compression, deep breathing. But nothing seemed to abate the snake and return Jack’s smile.

At the end of that long spring, either Jack or I was going on medication, and I decided it should probably be the person who was actually diagnosed with anxiety.

Joking aside, starting Jack on medicine was hardly something Joe and I took lightly. But it worked, he is still on it, and I don’t regret it for one single minute.

Did I ever imagine having a child on regular, daily medication? Of course not. I no more imagined this than I did his autism. I mean, no mother holds her tiny newborn son and wonders if when he’s in first grade he’ll need to take a tiny white pill before bed at night just so he can walk to the bus stop in the morning without freaking out because he thought he saw a spider on the driveway.

The way I see it, it’s like the cavemen looking around at each other and saying, hey listen, there’s this thing called fire out there. It’s bright. It’s warm. It will make our food taste better and keep our bodies comfortable and light up the darkest of nights. But, nah. We don’t need it.

They didn’t say that. They didn’t tell each other to look for alternatives or try spirituality or to just live with their cold, wet conditions. They lit the fire and warmed their hands.

Cavemen didn’t use it for everything. They didn’t bathe in it. They didn’t huddle around it in the middle of summer, when the sun was strong and bright and lit the days with a long golden yellow. They used it when they needed it.

For some reason, when I glanced over the tributes to Robin Williams in my Facebook feed and blog posts and People magazine, I didn’t immediately think about Mork and Mindy or Mrs. Doubtfire or Awakenings. I thought about Mr. Rogers.

You know, Mr. Rogers. The childhood icon who wore cardigan sweaters and changed into different shoes when he walked in his front door.

But it wasn’t the cardigans or the shoes that sprang to my mind. It was this quote:

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.”

I first heard this passage after the terrible Newtown tragedy in Connecticut, and it soothed me a great deal. It helped me understand that with every heartbreak, there can be goodness.

But still, I couldn’t figure out why my mind kept bouncing back to this quote whenever I saw a piece about Robin Williams. And one afternoon last week it occurred to me; reading about the heated debate over medicine and depression and anxiety in my newsfeed scares me. It scares me because I have a son who will likely struggle with this treacherous trifecta throughout his life.

So, like Mr. Rogers suggested, I wanted to see the helpers.  But suicide, by its very nature, is solitary and lone. At first glance there are no helpers.

But I looked a little closer, and I saw them.

Robin William’s helpers are those who surrounded him all these years, people who laughed at his comedy and listened to his woes and kept his secrets. Who, for the time being, kept his demons at bay.

His wife and children, mother and father, neighbors and friends, directors and co-stars. Although his life  was shorter than most, it was still longer than many. Because people helped him.

I certainly hope Robin Williams has found his peace, and that high above the wispy white clouds people like my Aunt Jean and the children of Newtown are laughing at his characters and jokes and imitations.

But mostly, I hope his helpers find their peace. I hope someday soon they emerge from the darkness of grief and move toward life’s colorful flames.

May they begin once again to behold all of life’s precious gifts; chubby toddlers and surprise rainbows and chocolate cupcakes with a lot of frosting. Warm summer evenings with a touch of fall’s cool breeze, and the beautifully mysterious smile from a little boy with autism.

Jack and Joe

Jack and Joe

 

 

 

 

 

 

A Trip to a Water Park

This weekend, we went to a water park.

Nothing undoes me like a road trip with my family. It doesn’t help that five out of the seven of us get terribly carsick and need to clutch thin plastic bags pilfered from the Mobil Mart for the entire ride. I am one of the unlucky five.

And then there’s the questions, the constant chatter of voices and laughter and complaining we must endure for the duration of any trip.

At one point I promised my family—promised them—that if one more person asked me how many more minutes or if the water slides were big or small or how much loooonger or if we could stop for lunch even though it was only 10:00 am, I was going to open the car door, tuck my body, and roll right out. While I rolled down the highway I would pull my hair out by the roots.

I described this in detail to make sure they understood. Five-year old Henry was the first to react.

“You will look funny wif no hair!”

And then the rest chimed in with their two cents.

“Sixty-four percent of the population is bald you are too tall to tuck your body you should have worn sneakers for that not those sandals is it time for lunch yet.”

This was approximately eleven minutes into the ride. By twelve minutes, the chatter disintegrated into a discussion about whether or not it’s legal to drive without any clothes on. The general consensus from the back two rows of the minivan is that men can drive a car without clothes, but women can’t because their “tops” will show.

Fast forward forty-six minutes into the ride; eight-year old Charlie unbuckled his seat back and came flying up from the third row of the van like a bat out of hell, screaming and covering his ears.

Rose burst into tears and Jack started to flap his hands and chant you are going to die sit down die die die sit down. Joe and I started shrieking at Charlie to calm down, we couldn’t pull over, he needed to sit now.

And what was all the fuss about, you wonder? Why did this child have an all-out panic attack on the drive to a water park on a beautiful summer afternoon?

He thought he saw a dark cloud and it might rain.

Fun, huh?

Two hours later we trundled into the water park. Five kids exploded from the car, the chaos of imaginary thunderclouds forgotten for the time being. But Charlie was still watchful, tipping his head up to check on the clouds every so often.

We set up a central location by the wave pool and organized towels and life vests and trips to the bathroom, and while Joe ferried the three older boys back and forth between the water slides, I sat and watched my two youngest—Rose and Henry—float around in the wave pool. I was still feeling unnerved by the scene in the car.

Every week I sit at my desk and aim to tell you our story as honestly—as authentically—as possible, and the truth is my third son is stricken with anxiety. He has been for almost a year now.

Sometimes I think Jack’s autism is like a jar full of colorful jellybeans, brimming with colorful pieces of rigidity and anxiety and delayed cognitive functioning.

Charlie, it seems, has stolen a piece of candy out of autism’s jar for himself. Without even asking first, he went right ahead and borrowed his older brother’s anxiety. He worries ceaselessly about the weather and car accidents and Big Foot and spiders in his bed. He has trouble making decisions and staying asleep at night.

It is equal parts frustrating and heartbreaking, terrifying and—dare I say it?—annoying.

The truth is, between my two boys, it feels as though I am battling this snake of anxiety armed with little more than, say, silly string and cheese whiz, when what I really need is a snake charmer; someone who knows the intricate steps to the serpent’s wily dance.

Every single morning before I get out of bed I promise myself I will be better. Every single morning.

I promise myself I will not fall prey to the trap of what is the weather will it rain I am afraid of thunder.

I will not snap and yell stop it stop it stop it you are safe stop worrying all the time don’t you even trust me.

I will be a better mother, a better listener, a better source of comfort when the imaginary rain clouds appear on Charlie’s horizon.

And the truth is, every day I fail.

I fail to be patient.

I fail to grasp the realness of my dark-haired boy’s worry.

I fail to be better.

The truth is, I don’t know what I am doing. I am confused and scared and nervous. At times I cannot believe we’ve been struck twice–not with autism, but with the spectrum’s sneaky sidekick.

And [insert whiny voice here] anxiety is just so hard. It is hard to watch and not help and hard to understand and hard to live with. The way I see it, Jack’s giving us a good enough run with it, and I didn’t really need a second time to practice.

The water park just opened a new slide, and my water-slide-riding people explained that you stand with your arms crossed on a platform, and whoosh! The platform disappears from under your feet, and you slide down.

Yeah, no thank you. I don’t even suffer from anxiety and it made me nervous.

Joe took Joey and Jack up to try it, and after waiting on line and standing on the platform, Jack chickened out and walked back down the long staircase.

An hour later he asked Joe to bring him again, and for the second time Jack came back down the steps. But when he reached the bottom he clenched his fists at his sides and said, “I have to do it NOW. By myself.”

“Are you sure, Jack? It’s really no big deal,” Joe told him.

“Yes. Now. I have to go back. Myself.”

So we all stood at the bottom of the slide and watched Jack make his way up the flight of metal stairs one more time. After a few minutes I glanced nervously at Joe.  “Where is he?”

“He’ll do it, he’ll come down,” Joe reassured me, shading his eyes with his hands and squinting up the long slide.

And after another long minute, I saw a familiar red and blue striped bathing suit come tumbling down the chute.

“Jack! You did it!”

I took a step back as three boys and one girl clustered around their special brother, patting him on the shoulder and clapping their hands. I noticed Rose’s wet hair curling on her cheek, Joey’s proud smile.

I noticed for the first time all day, Charlie wasn’t scanning the blue sky for clouds. He was looking at his brother.

And I overheard heard him ask, “How did you decide to do the slide?”

Jack answered in his monotone, “I don’t know. I tolded myself I could.”

Here is a boy who does not have the language for things like determination or courage, anxiety or frustration. He does not know the meaning of tenacity or perseverance or resolve. After three tries, he simply closed his eyes, felt the floor go out from underneath him, and slid feet first into a pool of water.

This boy, he gives me so much hope; for me, for himself, for dark-haired Charlie.

Hope that even if I never master the snake’s clandestine dance, I can still feel the rhythm and find the beat. I might even pick up a step or two and try to follow along.

All this time I’ve been filling my head with white noise, filling it with vows to be better and do better and think better and better better better.

Little did I know, better is right in front of me. It’s been here all this time.

Charlie and Henry by the wave pool.

Charlie and Henry by the wave pool.

 

This is What a Bajillion Looks Like

I’ve never written a follow-up post before. I’ve kind of stayed away from them, to be honest.

I mean, everyone knows sequels are never as good as the originals. Unless, of course, you are talking about the Rocky movies, in which case it is indisputable that Rocky II is the best movie ever made.

“Yo Adrian! I did it!”

But sometimes rules are made to be broken, even if those rules only exist in my head and no one knows about them and they make very little sense anyway. So this week I have broken my no-sequel-unless-it’s-a-Rocky-movie rule so I could follow-up on our conversation from last week.

Quick re-cap: in my last post I talked about how my 10-year old son Jack feels very, very alone with his autism diagnosis. I compared him to a magical unicorn in that he is unusual and solitary, beautiful and mystifying. I asked readers to post about people in their own lives who are diagnosed with this tricky disorder.

And I was simply blown away by the hundreds of responses. I expected the posts to look like this:

“Owen, 11, New York.”

But you wrote things like this:

“Hey, Jack. This is my son, also named Jack. He has autism. He is seven years old. And, although his social skills are deemed “very poor”, you’ll never meet a human being with a greater ability to “own the room.” You are not alone my friend.”

I read each and every message, e-mail, comment, and post. I read them and I re-read them and when I was done with that, I read them all again. I cried every time.

Joe does not handle the crying well. He does not know what to do when I cry. He kind of clears his throat and looks down at his feet, bewildered. Eventually he offers me a cookie.This usually works, and I stop.

But I could not stop because you kept writing. You wrote stories about your favorite people and how much they love Minecraft and Legos and spaceships and pirates.

“Hello, Jack! This is my 15 year old grandson, who also has autism. He is the wonderful unicorn in my world.”

I saw Jack in your words. I saw myself in your words. I breathed in your hope and encouragement, pain and love.

And the comments from the dads?  Well, they simply dissolved me. I think it’s because I know how much it would take for Joe to share about his son on a blog or in a Facebook message, to reveal the pain and hope and fear that is unique to a father’s heart.

“I have a son who is 14 and has autism ….I am a very athletic person and like most fathers looked forward to teaching and playing sports with my son which I cannot do– but what I can do is embrace the brilliant mind that my son has, his sense of humor, his kindness and his willingness to love — my job in life is to make sure Vinny can live the best life possible.”

Friends from high school reconnected. Old colleagues reached out, and one mother shared about her quiet child’s beautiful smile.

“Hi Jack, My son has autism. He is six. He doesn’t speak at all and he has a smile that can light up a room…just like yours.”

Teachers from around the country spoke.

“I’ve had several students with autism and each one of them has changed my life in some way.”

Minnesota, New Jersey, Oregon, Illinois, San Diego, California.

“Hi Jack! Guess what? I have two sons who have autism. They are twins. They are 13 years old and live in Iowa. One boy loves to go swimming, he loves elevators, and he has always enjoyed watching doors open and close. The other has a spectacular memory (he knows many facts), he sings with perfect pitch, and he plays the trombone.”

We read one message from a family in the Netherlands together over dinner at our favorite Mexican restaurant Monday night. Jack’s face lit with a slow smile, and then he reported, “Amsterdam. Is the capital of the Netherlands.”

“My younger son is autistic. He is eight and likes to play soccer and loves everything Minecraft. He is kind, loving and so much fun :) We live in Iceland. You are not alone!”

A few of you courageously shared a piece of yourselves.

“I have autism. I have a very successful life and I have my share of autism related problems too. But I’m 25 years old, I’ve accomplished much, and I love who I am. He is most definitely not alone.”

Throughout the week Jack asked for my phone so he could read the comments you each left. Watching his face light from within, I could tell you did what I could not. Through words and sentences and paragraphs and social media, you connected my son to a larger world beyond himself.

You showed him that yes, there are other magical unicorns.

“My beautiful 11year old has Autism and ADHD, she too feels alone even when she’s with others.”

Many of your posts about your tender little toddlers reminded me of the days when Joe and I were in the trenches of autism.

See, right now we live with autism, we struggle and sometimes rejoice with autism, but that’s nothing compared to the heat of the diagnosis battle, when you’re trying to figure out services and early intervention and speech therapy, all while your little guy or gal is tearing up the house and starting the car.

I remember.

I wrote here about how the biggest fight I ever had with Joe was over Oreos. And this is true, it was. But perhaps the most damaging fight I’ve ever had with my husband was years later, when Jack was two and a half.

I walked in the door one afternoon in January and announced he was starting in an integrated preschool in downtown Buffalo the following week, and he would take the bus.

“Wait, what? He’s going to school?”

“Well, yes,” I told him. “That’s what we’ve been working towards all this time.”

(What I really wanted to say was, “Why the f%$* do you think I’ve been going to all these appointments and evaluations and meetings for the past six months? Because I like watching my son barely respond to his own name or stack blocks or point his finger?”)

“I’m just saying. Don’t you think this is all a little fast?” Cue enormous argument and four-day standoff.

I remember.

If I’ve learned anything from the posts this week, it’s that autism casts a wide, arbitrary net. Sometimes the net scoops up more than one from a family, other times it is a solitary selection.

“I have not one but two wonderful boys on the spectrum…..Autism is just a facet of who they are, like having brown eyes or blonde hair or freckles or skinny legs or glasses…”

After dinner one night this week, I sat down to my laptop for a few minutes to read all of your comments again and start putting my notes together for this post. Predictably, Jack came in to hover over my shoulder and beg for Itunes.

But once again he was drawn into the thread on Facebook, to the pictures and details and descriptions of your daughters and sons, students and grandchildren, nephews and neighbors. And then he paused for a moment.

“Joe. Cariello,” he breathed. “That is Dad.”

I squinted at the screen and saw this all the way at the bottom of the Facebook thread:

“Hi Jack. My son has autism, and I have loved you since the day you were born.”

Jack bounded out of the room to take his shower, and I sat in our little office thinking back to our fight about integrated preschool. Goodness, how I hated my husband that cold, gray day in Buffalo. I hated him for standing in my way and not understanding my panic.

But now–eight years later–I realize that everyone’s heart breaks differently. Joe needed more time to understand and absorb the neurological anomaly in his tiny son’s brain. Yet I was racing against an imaginary spectrum clock, racing to find services and early intervention and the best occupational therapy.

In the end we were both right and both wrong and both heartbroken.

I guess all this time I thought bajillion was a number, a fictitious way to quantify replies to a random blog post. You have shown me I was wrong. It’s not a number at all.

Bajillion is confusion and fear and golden dogs named Scooby. It is boys from Michigan and girls from Utah and a 13-year old with perfect pitch.

It is rage and disappointment, grace and unity. It is facing each other across the dinner table night after night with the same pit in your stomach while your son screams and thrashes on the floor because the squash is too yellow too yellow too yellow.

It is Disney movies and breathtaking memory and the extraordinary gift of unusual people. It is brothers sliding down autism’s slippery bell curve together, laughing and giggling and looking up to the bright blue sky overhead.

It is a no rules Yo Adrian kind of thing.

If you want, you can click here to see the entire thread of Facebook comments from the week. Warning: reading them may cause crying. And laughing. And head-nodding. Who knows? You may even see a unicorn.

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Will you help me show him he’s not alone?

Lately I’ve been really curious about what autism means to my 10-year old son, Jack.

I mean, I know he knows he has it. And we know he hates it. But what does it mean to him, exactly?

So, I conducted some high-level research. It went something like this:

“Jack, what does autism mean to you?”

(Ears covered, face screwed up.) “Stop TALKING about this to me.”

“But what do you think it means to have—“

NO MORE TALKING.”

So I had to go underground with my investigation, if you will. I had to resort to strictly observing him, examining and noting his reaction in certain situations and circumstances.

And as best as I can understand, Jack thinks autism means you earn things.

Let me give you an example. Last week I had to bring Jack for his eye appointment, which is another post entirely and someday I’ll tell you all about it when I’ve fully recovered from the trauma of listening to Katy Perry for the whole ride and pupil dilation and that man’s shirt looks dirty.

The appointment was at 12:45. We needed an hour and fifteen minutes to get there on time, which meant we needed to leave by 11:30 am. This left me plenty of time to take a 9:00 Crossfit class, go home, shower, and pick Jack up from karate camp.

There was just one minor autism-related snafu: Jack remembered that the last time we went to his pediatric ophthalmologist appointment in Boston—on Tuesday, December 10th at 10:30 am and the doctor wore a black dress and we were in the exam room with light blue walls, to be exact—he stayed home from school all day. And so now he wanted to stay home from karate camp, too.

This did not parse well with my plans for working out.

But see, I have experience with this kind of thing. I know what I’m doing. I’ve read all the books and done all the research about child rearing and autism and parenting, and so I did what every good mother would do in this situation. I reached for the bribe.

“Jack, if you go to karate camp first I will buy you Snow White on DVD.”

“The Disney Special Platinum Edition or the Two-Disc Extended Edition.”

“Uh, whichever one you want,” I told him, making a mental note to myself to limit his time on Amazon.

“NO! That is EARNING! I won’t EARN A DVD. People with autism earn things.”

You see? He has somehow gotten the idea that having autism means you have to earn things. It should be fun trying to convince him to get a job someday.

When we first started talking to Jack about his autism, we tried to explain it in terms he could understand. We told him his mind works differently and sometimes his body moves because of something called self stimulation.

Naturally, he had a lot of questions. He wondered if he could die from it and why he has it and if he’ll ever get rid of it. He also asked, “Who else. Has autism.”

We kind of skipped over that one.

Then one day last spring he came off the bus and said, “I am the only one. In my class with autism.” And that afternoon, it dawned on me: he feels alone in the spectrum world.

Sure, I can tell him all the about the statistics. I could sit him down and say, “Listen, Jack, one out of  eighty-eight kids are diagnosed now, so there are literally a bajillion people like you, people who picture Wednesday as orange and remember what the ophthalmologist wore six months ago.”

(And yes, bajillion is a real number. I researched it.)

“Henry. Henry has autism,” he announced one afternoon. We’d just finished picking blueberries, and I looked over at my five-year old—who was trying to see if one of the round ripe fruit would fit in his nostril—and  back at Jack.

“I can see why you might think that,” I said slowly. “But he isn’t diagnosed with autism.”

“Who else. Who else has it.”

“Well, lots of people have autism, Jack.”

WHO.”

What do I say?  Of course I know other kids who have it, adults even. But it is not my place to open that dialogue.

So instead, I try to point out autism’s more savory qualities; his memory and his kindness, his determination and his progress. But it does little to abate the obvious loneliness, the isolation of being the only one in his family, in his class, maybe in the universe diagnosed with spectrum disorder.

It’s as though I’m telling him this:

“Jack you are a brilliant unicorn amongst us ordinary horses. You are so beautiful!

 

We know there are tons of you out there—bajillions, even—but we don’t know how to show you. We don’t know where they all are.

 

Oh, and magical unicorn? We don’t really get you. We don’t understand you. We are blinded by your colorful beauty but your tantrums scare the crap out of us. In fact, maybe it would just be better if you were a plain old horse like the rest of us. Then we could figure out how to teach you fractions.”

All summer Jack’s been telling me he wants his autism to stay a secret when he starts fifth grade in the fall. He wants to keep it from the teachers and principal and students in middle school. As of yet, I have not had the heart—or the courage—to tell him they already know, that something called an IEP and paraprofessionals and a modified course load have been in the works for a while now.

I never had a concrete plan or vision when I started writing this blog. Mostly I did it because my publisher insisted I start one to promote the book.

But it’s been over two years now, and looking back I guess I also did it so I would feel less alone. From the safety of my little office I could share my heartache and make my jokes and connect through cyberspace with other people like me who are also balancing autism and parenthood and play dough and swimming lessons. And if there was a smidgen of autism awareness to the whole thing, well, that was just a bonus.

But ultimately, I have failed. I have failed because, while I feel connected to a wider community of people, the boy sitting in the room next to me—the boy with autism—feels confused and scared and ashamed.

He feels alone.

More than that, he wants to hide something that is as fundamental and essential to him as his beating heart or his thinking brain or the freckle on his right forearm. He wants to keep autism a secret.

I wish to somehow show him that there are, in fact, a bajillion more people like him in this world. That there are boys and girls and fathers and daughters who cover their ears during fireworks and squint against fluorescent lighting’s blinding glare. People who have IEP’s and aides in the classroom and battle anxiety’s fierce snake.

I want to show him that many of those same people play beautiful music and have jobs to earn money and love to go to the movies and always eat ice cream after dinner.

They are, in essence, just like him.

And so readers, I was hoping you would help me show my son he’s not alone. I was hoping I could call on my own community in order to expand Jack’s solitary world.

Would you click here to go to my Facebook page, and add the name of someone you know with autism in the comment section below this post?

Share as much or as little as you like. Share the name and age and of your son or daughter or neighbor or student or brother or maybe even yourself. Share a picture if you feel comfortable. Tell us where you live if you like, or add a little something that makes this person special.

I can’t wait to see what a bajillion looks like. I’ll even go first.

My son Jack has autism. He is ten. He is as magical as a unicorn.

My son Jack has autism. He is ten. He is as magical as a unicorn.

 

 

 

 

Why Girls Are Harder To Raise Than Boys

Dear Rose,

I have a confession to make. I didn’t want to have a girl.

We kept your gender a surprise throughout the pregnancy, but I was so sure you were a boy. We already had three boys, I knew how to handle boys, and everyone knows boys are easier.

But on a hot summer morning in late July, out you came; a pink baby girl.

I prepared myself for all the things people said were hard about girls, the whining and the tantrums and the emotional landmines. The battles over dresses and headbands and the right kinds of tights.

But so far, we haven’t really had any of that stuff.

I mean, yes, maybe you’ve had a few meltdowns over nothing and you cry a little more easily than your four brothers, but for the most part you are a very easy, pleasant girl. Quiet. A little on the serious side, but slow to anger and quick to smile.

But you’re still hard for me.

The hard part is that in some ways, the world is bossy when it comes to girls. The world wants to tell girls they should look less like this and more like that and eat this and not that and wear these but never those.

In some ways, the world is in charge of our daughters.

When you were in kindergarten, you came home one day and said you needed a new winter coat because a girl at school had told you your purple one was a “chubby coat” and it made you look puffy.

Looking in your teary eyes, I very nearly cried myself.

I was frantic. I had no idea what to do. Should I run out and buy a new coat? Something sleeker, trimmer, maybe a pink one?  Should I call the teacher, the principal, the other girl’s mother?

See, you are like the most perfect cake with delicate pink frosting. I worry the wrong comment or remark might cut into you like a knife, collapsing the whole sweet confection until you’re nothing but crumbs of self-doubt and insecurity and fear.

The idea of you feeling bad about herself—feeling for one teeny second like you are too much or too little or too tall or too puffy or too anything–makes the room stand still. And so I step gingerly, lightly around subjects like weight and appearance, diet and exercise.

It’s so easy to reach for the typical words we use to describe girls; beautiful, pretty, nice, cute. And I use them a lot for you. But sometimes they have a hollow ring to them, like I’m recycling the same time-worn phrase over and over.

One of the teachers from school once told me that as a mother with a daughter, I have to do more than just stop complaining about my own appearance. I have to make an effort to appreciate myself, to say things like, “Doesn’t my hair look nice today?” and “This skirt fits me well.”

This is very hard. It is hard for me to stand in front of the bathroom mirror and look at my reflection and try to come up with something nice to say. But then I look down and see a small blonde girl hovering at my elbow, absorbing every move I make with wide eyes and open ears. So I take a deep breath and say, “I like my new haircut!”

In that moment, I know that only I can turn off the world’s white noise and give you a voice of your own, one that says I am strong I am good I am everything I need to be.

I am enough.

Sometimes people wonder what it’s like for the rest of you to grow up with Jack, to have a brother with autism who is rigid and bossy and makes you watch Dumbo a hundred million times. They ask me if you are worried or scared or confused.

The truth is I don’t know how you feel about Jack and his autism. I’ve never asked you.

But I do know you are the only one who calls him Jackie.

I know that every single day after school last year, you waited until your older brother boarded the big yellow bus and then you walked over to his aide and asked, “Did he have a good day today? If he gets upset, you can come get me. Because I know how to help him.”

I know one day we were making lunch together in the kitchen and you said quietly, “Mom. No one sits with Jack on the bus. I am sad he has no friends.”

I didn’t say anything, I just kept my head down and my eyes trained on the green apple I was peeling.

“I wish I was in fourth grade so I could sit in the back with him.”

I don’t need to ask. I know you are worried and scared and confused. I know your sweet heart aches for him.

But I know you love him. I know you are one of the few people who can add a soft touch to his rigid world and reach his complicated heart.

You know what? I worried about you and that stupid puffy coat all through kindergarten. But I never did buy a new one. The next morning after breakfast you got up from your chair, took it off the hook, and put it on. And just before you walked out the door Jack said, “Zip it tight. It is cold.”

Rose, today is your birthday. You are seven.

Your favorite food is steak and your cheeks turn pink when you jump rope. You get carsick on long rides and you are missing your top two teeth and you just started wearing glasses. You adore your Daddy.

Today, and every day, you are strong and good and fast and sweet and beautiful and nice and special and smart.

You are enough.

Slowly, your voice is growing, building, blossoming, and when you speak I hear your strength and compassion, tenderness and love.

Especially the time you called out softly, “Jackie, sit here. Sit next to me.”

Happy birthday, my sweet girl.

Rose and her birthday flowers.

Rose and her birthday flowers.