To My Sweet Daughter, Please Don’t Give Up on Your Brother With Autism

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Dear Emma,

When you think no one is looking, when you think no one is listening, when you think no one knows how you feel, I want you to always remember…

I see you. I hear you. I feel you.

I saw you. I saw you as a little girl when you tried so hard to make your brother see you. I saw you run to him with chubby outstretched arms proudly waving your latest artwork from preschool, so desperately wanting his approval. Yet there was not so much as a glance in your direction from the brother you so desperately wanted to please. I saw you beg for a playmate in a brother who shouted, “go away,” “get out,” or worst, who completely ignored you, making you wonder if you were invisible. I saw your hope tucked secretly under your bed in the form of a drawing with each waxy crayon mark telling a story of a brother and sister playing happily on the swings, playing together and smiling, like so many brothers and sisters do. I saw your persistence when you refused to take no for an answer no matter how many times you were turned away. I saw you as you wiped away your tears, confused and saddened time and time again.

I heard you. I heard you as a little girl when you tried so hard to make your brother hear you. I heard you when you called his name again and again and again, and I heard the loud silence when your calls went unanswered, knowing full well the silence was much louder to your tender ears. I heard your muffled cries soaking your butterfly pillow as you tried to understand why your brother’s words, his actions, his inactions could sometimes be so hurtful. I heard the genuine concern in your tiny toddler voice when you asked me why Ryan wouldn’t let you hug him and the even greater concern when you worried how he would know you love him without your hugs and kisses. I heard you pretend with an imaginary brother in your bedroom, a brother who played with you, listened to you, shared with you and hugged you. I heard you giggle with joy on the occasions your real brother let you in… in his room… in his space… in his heart, quickly forgetting the imaginary brother who would still be waiting for you in your bedroom when this rare moment passed.

I felt you. I felt you as a little girl when you tried so hard to make your brother feel your love. I felt your confusion as you proudly tried to teach your brother how to tie his shoes. Rather than thank you, he shouted at you, angered and frustrated that so many things come easier for you. I felt your sadness as you watched the lucky four leaf clover you found in an open field float to the ground after you shared your good fortune with a brother, who doesn’t believe in luck and proved his disbelief by carelessly slapping the lucky clover out of your hand. I felt your body shake with heartbreaking sobs on numerous occasions as you tried to understand “Why?” You were too little to understand my answers. I felt your loneliness as you watched your brother walk along the seashore with his big brother while you, his little sister, stood by alone, invisible to him yet again.

I see you. Now, I see you as a bigger girl, yet still a little sister — a sister who is trying to understand what an autism diagnosis means and trying to find your own path on this journey. I see that the desire you have to reach your brother, regardless of the countless rejections, remains inside your tender heart as you painstakingly wrap a birthday gift you purchased with your own money in hopes of just once pleasing him. I see your face light up when, on the rare occasion, your brother calls your name, talks to you and treats you in a way you once only dreamed about. I see your joy, your hope, your pride when he asks you, his baby sister, a question about Minecraft. I see you watch your two brothers laugh together, script together and tease one another, wondering if one day, it will be you.

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I hear you. Now, I hear you as a bigger girl, and I hear the resignation in your voice as you’re ignored once again or are told to “be quiet,” “stop talking” or the ouchiest one of all, “great, she’s coming too” as you hop next to him in the car and glare his way and mumble, “Whatever, Ryan.” I hear the once-confused innocence in your voice replaced with anger, now that you are fed up, and I hear you shout, “Shut up, Ryan!” or “What was that for?” or my least favorite,”You’re such a jerk!” However, the words that shoot like an arrow from my ears to my heart are your grown up, well-beyond 8-years words that you mumble as you shrug your shoulders and say, “I know it’s ’cause of his autism” and then go about your business. Today, what I hear most is the silence, however, now the tables have turned and the silence is not coming from your brother, it’s coming from you. The attempts to reach your brother are fewer. The hope for him to see you, hear you and feel you has diminished. There have been too many tears, too many rejections, too many slights and too many hurt feelings.

I feel you. I feel you pulling back, protecting yourself. I feel your anger, your jealousy, your confusion, and sadly, your acceptance. I feel you slowly, quietly giving up. Before you do, I want you to see, to hear and to feel.

1413466857 Just as I see you, just as I hear you, and just as I feel you, I also see, hear and feel your brother. I see him run to your side when a group of boys won’t let you play with them and make you cry. I hear him yell at those same boys, “Do you know who that is?! That’s my sister. You need to let her play too.” I feel his pride, his protectiveness and his love for you. I see him smile when you talk to one another about a Minecraft video in Minecraft language that no one else in the house speaks; that is something only the two of you share. I hear the pride in his laughter when you script a scene from his favorite show and you are spot on with your imitation. I feel his love for you when he smiles at you after you kindly share a favorite snack or treat with him regardless of how many times he has refused to share with you.

Whether it’s a group of meanie pants boys, a math problem you can’t figure out or a new Minecraft world you are having trouble navigating, your brother is and always has been by your side. You may not see it, hear it or feel it, but, I promise you, it is true. Although your brother may not ever jump next to you on the swing as you once hoped for and he may talk to you in his bossy voice more frequently than in his nice voice because you “aren’t serious enough,” your brother loves you and no matter how many times it feels like he has turned his back on you, I believe he always has and always will have your back.

You can go ahead and blame autism on the days it hurts more — sometimes Mommy does too — but, regardless of autism, regardless of more hurtful moments than good moments, please don’t every give up on your brother, I promise, he will never give up on you.

I believe in the deepest part of my heart, one day, you too will walk along that seashore with both your brothers, and they will both be grateful to have you by their side and in their heart. How they show that gratitude will be very different, but, as their little sister, you will know the love for you is there… you will see it… you will hear it… you will feel it.

Yes, my little love, you must never forget… I see you. I hear you. I feel you. And believe it or not, he does too.

Love,
Mommy

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This post originally appeared on The AWEnsty of Autism.

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To All the Parents of Sick Children, I See You

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To the parents in the waiting room,

Everything about you screams “worried.” You sit there with so many unanswered questions; you’re not sure if keeping busy via mobile device or pacing the halls is the right thing to do. The lump in your throat seems to grow with every second. Swallowing, blinking, breathing aren’t coming natural. You have to remind yourself of these necessary functions. Seconds seem like minutes. Minutes seem like hours. Nothing in the world matters at this moment but your child behind those swinging doors. Oh the frustration, the fear… I see you.

To the mom at the grocery store,

Your cart is as heavy as the burden you carry. Your cheek bones, skin and bags under your eyes continue to give way to gravity. Exhaustion is part of your daily routine. The stress has aged you in ways you never thought possible. Frustration rings true as you subconsciously slam each item at the checkout stand. The hole in your heart is much larger than most people know… I see you.

To the guy hunched over at the end of the bar,

Nobody understands the guilt you carry. You’re supposed to be “the dad,” the safety net, the superhero, the savior, the protector of all evil! Part of you feels like a failure; part of you feels helpless. The pressure at work to perform and provide is your only outlet for recuperating the failed mission of fatherhood. It seems as if you have no place else to go, so you’re washing down yesterday’s (and tomorrow’s) medical bills and mishaps one sip at a time. I don’t judge you… I see you.

To the dad in line at the pharmacy,

You’re impatiently waiting for your number to be called, but the laundry-list of medication always seems to take longer than expected. As you step forward and swipe your medical card, reality smacks you in the face with every bar scan. The green numbers flashing on the register are a subtle reminder this battle is far from over. The nice man behind the counter is about to speak before you cut him off — no need for consultation as this marks your fourth trip in three weeks. Yes, you’re that dad. I see you.

To the woman in line at the coffee shop,

You fake a smile to the child in front you hanging onto the legs of her mother. You’re not mad. I wouldn’t even say you’re jealous. The beat-down of hospital life, medical jargon and appointments have simply shortened your fuse. Instead of hearing the little girl in front of you hum a tune to the latest Disney movie, your internal alarm clock kicks in, so you look at your watch to see if meds were given on time. Even on your break, there’s no real escape. As you step up to pay, the barista asks for your rewards number. Out of habit, medical record number #830876 falls off your lips and you apologetically correct yourself. Sigh… I see you.

To all parents of sick children,

Your courage and determination doesn’t go unnoticed. You unintentionally inspire through empathy and unconditional love. You pledge an unnamed fraternity by force, an unspoken bond of some sort. When you pass through the halls, you don’t ask questions and rarely make eye contact. No words exchanged. You nod out of respect and carry on with your own battle. The nod or half smile has several meanings — mostly empathy. In some odd way, it’s comforting, and heartfelt, and beautiful.

To all the parents… I not only see you, I am you.

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To the Me Who Thought I Could Fix My Son’s Autism

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wcmnewcover The first chapter of the book I wrote is a letter to myself the day my son, Jack, was diagnosed with autism spectrum disorder. It’s everything I wish I knew about him and me and autism way back in November of 2006, when he was a chubby 18-month old who made me frantic because he wouldn’t talk or point or play or sleep.

I’d like to share a part of that letter with you today.

But before I share the letter, I have to give you the backstory. I have to tell you about the day he was diagnosed — a memory so intact, so perfect and whole and tender, it’s as though it happened last week instead of nine years ago.

For months, we’d been on the wait list for an appointment with one of Buffalo’s top developmental pediatricians. My husband, Joe, and I were shocked at how long it took to get into some of these places, and stupidly, we believed that by the time we actually did see a specialist, Jack would have outgrown all this stuff and be totally fine.

It didn’t exactly happen that way.

One chilly afternoon in the late fall, the doctor’s office called to say they could squeeze us in at the end of the day. I made arrangements for a neighbor to watch 2-year old Joey, and called Joe, who was busy with patients and unable to get away.

I buckled Jack into his car seat and raced downtown. After about 45 minutes of chasing him around the crowded waiting area, they announced our name, and we trooped back to a tiny, cramped exam room.

I mean, it was small. I’m fairly tall — about 5 foot, 9 inches, and I have big feet — and I felt like a giraffe sitting in one of the chairs positioned by the wall.

I was hot, and the waistband of my pants felt snug. I picked at the button irritably while Jack slumped against my leg. Ten minutes later, the doctor came with a chart in his hands. He had soft brown hair that sort of flopped over his forehead. He had on a white shirt with a tie.

He looked over the paperwork I’d sent — months and months worth of evaluations and tests and assessments that had scary words and phrases like auditory processing disorder and significant speech delay — and  started to ask me some questions quietly. He talked to me, but he kept his eyes on Jack, who was listlessly tracing the outline of a tile on the floor.

How much speech does he have now?

Well, he’s still not saying any words. He signs for more, and sometimes he kind of says up. But it sounds like uuh-uuuh.

How about Mama or Dada?

No.

Does he point?

No.

Does he turn when you call his name?

No.

Does he play any games like Peek-a-boo or Patty-cake?

No.

Any other concerns?

He doesn’t sleep well. He seems to have a hard time kind of managing certain foods, like he has trouble swallowing or something.

I see. Anything else?

Well, he never, um, looks at us. Or reaches for us. It’s hard to describe, but it’s like we don’t exist to him. He doesn’t seem to know who we are.

All at once, Jack got up from the floor and began to whirl around. He kept his head down but his arms were extended, like some kind of animated starfish. He stumbled and bumped his shin on the filing cabinet, and he started to shriek.

I called out to him. Jack, come to Mommy. Jack, are you OK?  But he didn’t move or look my way.

I got up and walked the three steps to where he stood, flapping and screaming. I tried to mold his body into mine and curl him against me, but he kept his limbs and torso as stiff as a board. The doctor watched, motionless, from his chair.

Does he ever come to you for comfort? If he’s hurt?

I shook my head. No.

I looked back at the kind man sitting in the room with us, and time stood still.

And in that space of maybe a fraction of a second, I think I knew. I knew it was no longer about eye contact and how many words he could say and whether or not he pointed his finger to show me a bird in the sky.

It was about a solitary little boy who was so remote and inaccessible and lost to me; he didn’t need my comfort when he was hurt.

He didn’t need me to kiss the boo-boo, or wipe away his tears, or murmur sssshhhh it’s all right, Jack, you’re OK into his small ear while I cradled his head against my shoulder.

I wish I could describe the way I felt in that second. Crouched over Jack, I felt a pain so white-hot, it was almost searing.

I longed for Joe.

I longed to nestle my face into his neck.

Because although I’m tall, Joe is taller, and his neck is the perfect place for me to grieve whatever it is I need to grieve: a miscarriage, a bad day at work, a little boy who will not say one blessed word.

But it was just me. Just me and my son.

I walked out of the doctor’s office and through the waiting room and back into the world, holding my sweet, silent, mysterious Jack’s hand.

And on that day, this is what I wished I’d known. For both of our sakes.

diagnosis-jack November 3, 2006

Dear Self,

Today you received Jack’s official diagnosis. You expected this news all along, but even so, you’re still reeling from the doctor’s softly-spoken words. You listened attentively to his hushed voice saying things like considerable delay and early intervention as Jack whirled and spun around the tiny exam room. At one point you started to sweat.

It’s been a long journey leading up to this day, a long road of when will he talk and why doesn’t he recognize me. A long two years of tantrums, heartache and the eerie quiet of a toddler who doesn’t speak. Months of watching your brown-haired boy through a two-way mirror as a variety of specialists tested his hearing, tested his language, tested the way he stacked multi-colored blocks.

Autism.

Right now, you’re thinking you can fix him, that he will outgrow this. But you can’t and he won’t.  Instead, both you and he will learn to coexist with it, and in the process you’ll discover how grateful you are to be privy to the miracle of his mind.

Slowly, steadily, you’re going to see Jack for everything he is rather than what he is not. The list of he’s not talking, when will he point, why doesn’t he play with others, will eventually be replaced with look at his smile, I love to hear his voice, tell me again, Jack, tell me everything you have to say tell me.

He will surprise you every single day.

In the meantime, I won’t lie. You have some long days ahead of you, days full of frustration, of intense outbursts, of whining. Days where you’ll go to bed at night hating yourself because you feel you haven’t done enough or haven’t done it right. But you will always wake in the morning with renewed resolve and determination because deep down you know he needs your strength.

At times you are going to marvel at his progress, his giant leaps in communication and social behavior. Then for a while, nothing. His development will level off and you’ll fight a rising panic that he’ll never move forward again. Don’t worry, like the steps on a staircase, his pattern will be to jump up and then stand still for a while.

He will teach you to see days as colors.

Jack’s going to latch onto subjects, things like cars and license plates and seemingly random dates. As you continue to open your own mind to autism, you’ll start to understand what it all means to him. And so it will be meaningful to you.

You’re also worried about how Jack’s autism will affect the dynamic with his siblings. Please trust me that the relationship between these children is going to blossom into something extraordinary. You are all going to change for the better because of him.

And although you’ll start to understand that you can’t save Jack, you will never, ever give up on this incredible boy. One day there will be a beautiful moment when the boy and the autism combine and you fiercely love them both.

I can’t wait for you to meet him.

Oh, and one more thing.  If you think today was crazy, you might want to brace yourself. Because tomorrow you’re going to find out you’re pregnant.

— Me

P.S. It’s a girl.

This post originally appeared on CarrieCariello.com.

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The Heartwarming Result of Chris Pratt and Chris Evans’ Epic Super Bowl Bet

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In late January, two superhero-playing actors made what’s probably our favorite Super Bowl bet ever.

Chris Pratt, a Seahawks fan, made a little Twitter wager with Chris Evans, a Patriots fan, deciding that the outcome of the big game would determine whether Evans would visit Seattle Children’s Hospital with a Seahawks flag or whether Pratt would wear a Tom Brady jersey at Christopher’s Haven, a home for families battling cancer in Boston.

When the Patriots won last weekend, Pratt, who played Star-Lord in Guardians of the Galaxy, graciously accepted defeat — but Evans, from the Captain America films, decided he’d still make an appearance for the kids — we’d expect nothing less from our most patriotic superhero.

On Friday, Pratt donned his Star-Lord costume and visited Christopher’s Haven home for kids with cancer. He posted some awesome photos from the day on his Facebook page.

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Via Chris Pratt’s Facebook Page
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Via Chris Pratt’s Facebook Page
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Via Chris Pratt’s Facebook Page

Evans posed for photos at Christopher’s Haven, too, though not in costume. But Star-Lord and Captain America will also visit the Seattle Children’s Hospital.

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Via Chris Pratt’s Facebook Page
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Via Chris Pratt’s Facebook Page

Get ready, Seattle Children’s Hospital — these superheroes are coming for you next!

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When I Have to Choose One Child’s Medical Needs Over the Other’s

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Not long after his 1st birthday, the fever spiked.

I wouldn’t have known he was even sick had it not been for me kissing him on the head before I went to sleep. He was hot. Really hot. I gave him Tylenol, but it didn’t work. The fever stayed at a solid 104 degrees. So I gave him Advil, too. I sat in the rocking chair with him in my arms and watched the rise and fall of his chest. Staring at him, I tried to will the Advil to work and bring the fever down. I wondered what I should do next if it didn’t.

In the screen of the baby monitor I could see my other child tossing and turning, and I hoped he wasn’t sick too. But within a minute I could see the arching start. His neck pulled back and his arms stiffened. His posture resembled the shape of a rainbow. Then the screaming started. The pain from the muscle contractions woke him up, and he cried for me. I got up to put his brother down to come help, but as I walked across the room to the bed, my baby began to convulse. He’d begun to seize. It was the first seizure I’d ever witnessed, and I was instantly terrified. Alone and afraid, I had no choice but to ignore my other son’s cries for help and stay with his brother. As I held his shaking body in my arms, my ears were bombarded with cries, “Mommy, where are you? Why aren’t you comming? Mommy, help!”

After I got off the phone with the doctor and got his fever down I went to him. But you he longer wanted me. He felt angry and betrayed. In his moment of excruciating pain, I’d ignored him. I’d hollered down the hall several times that his brother was sick and that I’d come as soon as I could, but it did’t matter to him. At 4-years old, he wasn’t capable of understanding. He just knew I hadn’t come. I was trying to get them both the best medical attention and care I could, and in doing so, I’d failed him. I knew I’d done what I had to, but it still destroyed me.

For me, this is by far the hardest aspect of raising two kids with Dystonia. It’s horrible that I have to choose between my children when they are both in crisis. I can only do so much at a time. I can’t be in two places at once. What I will always struggle with is the fact that in doing what one needs I sometimes have to ignore what the other needs. So I’ve had to learn to triage needs. One’s need for treatment for gastric bleeding trumps his brother’s need for emotional support during a dystonic storm. Seizure trumped back spasms. It’s these choices that break me apart. I want to be there for both of them always. But I can’t. I’m doing my best to accept this fact.

My greatest fear is that you, my 4-year-old boy, will be scarred and confused by what I do and don’t do.  Because no matter how I try to explain it, you don’t see the choice. All you see is Mommy walking away from you and Mommy choosing not to come help when you call me in desperate pain. You don’t see I’m trying to save you both from your own bodies. You don’t see me cry over the impossible decisions I’m forced to make. All you see is me not choosing you — me not aways being there when you need me. It’s my hope that in time, you come to realize that I gave you all I could, even on the days when it wasn’t enough

So to you, my little love, please know I’m sorry. I’m sorry for all the times I’ve left you scared and crying for me. I’m sorry for all the pain I can’t fix. I’m sorry for not being braver and stronger. I’m sorry that any of this is happening to you.  I’m sorry I am not more.  I’m sorry I am not enough. Please know that I’m doing all can. I will never stop trying to help, and I will never stop looking for answers.  I will always do everything I can to help you, even though sometimes I know it just simply won’t be enough.

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What a Woman’s Outrageous Comment About My Family Taught Me About Myself

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Sometimes, I think the greatest battles fought are the internal ones.

Lately, I’ve been fighting those internal struggles we all face. Recently, I was leaving a Publix supermarket, and music was playing. People were festive. I left at the same time as another person. We both didn’t need a shopping cart and were carrying our groceries to our vehicles. I guess she felt compelled to speak to a similar smiling kindred spirit. She noticed the box of diapers in my hand. In an attempt to connect, she exclaimed, “Oh… I know your life!” She pointed to the box of diapers and smiled jovially. I stopped cold in my tracks. Because I realized how wrong she was. She thought I was buying diapers for a little one, but never in a hundred years would she ever dream that I was buying diapers for a 9-year-old.

How would she react if she knew that? She was so certain — she knew my life.

Cerebral palsy can affect any muscle group, and as a result, Noah struggles with incontinence. I’m still hopeful Noah will become fully trained in future. However, at this point, diapers are still a part of our life. I knew her words were the kindhearted, small-talk dribble of a stranger in the parking lot of Publix. There was no need to draw attention to the fallacies of her vision. Yet, in moments of idleness, I dwelled upon them. Then, I regurgitated the following to myself: Who do she thinks she is? She doesn’t know my life. She doesn’t know my family. She hasn’t a clue. She could never imagine the challenges Noah has faced — the surgeries (two in the last three years), the therapies (at one point, Noah was doing therapy 9-5), the physical limitations, the school challenges (It takes a whole IEP team for Noah to attend.), the insurance challenges, the financial challenges. The list seems endless. Who does that? Who walks up to a perfect stranger and claims to know them? I wish I had the life she envisioned — the child who only needed diapers as a baby. The child who ate well. The child who met milestones. But that isn’t my life. That isn’t us. How unfair! How wrong of her to share her generalizations with someone she barely knew.

A deep-seeded missile  bore down in my psyche, reeking heartache. A pesky missile, ruining my serene existence. She only said mere words. But I launched the missile. Then, I refocused, realizing I was inadvertently watering the wrong things. It’s easy to do. That’s how negativity enters my life, never externally, always internally. The fact is, she didn’t know us. Thus, it was up to me to stop that negative thinking. Because I also didn’t really know her. Maybe, the wink she gave me was for the tickles, the toothy grin, the magnificent moments, the major meltdowns, the friends, the family, the fun, the late nights, the laughter, the long talks and the love that goes into each child. Those are the things no disability will ever take from my Noah. Those are things I should be watering. Those are things she saw when our eyes connected.

Yes, maybe, she did see my child or our family. But it was I who chose to focus on our differences. I wish I had focused on our similarities when we met. My goal this year is to water the attributes in myself that I want to see grow and prune those negative footholds that break down my spirit. So, when I meet a stranger and she smiles and says, “I know you,” I can say, “Yes, you do, but you only know a fraction of my blessing.”

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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