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 [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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6 Influential Musicians You Won’t See On Stage at The Grammys This Weekend

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The Grammys are just around the corner, and the world is abuzz with speculation about which artists will win big.

But here’s who you won’t see performing on the music industry’s biggest night: anyone with a physical or intellectual disability. So we found six talented musicians with disabilities you should know about. Maybe next year one of these artists will grace the Grammy stage.

Sean Forbes

Despite growing up profoundly deaf due to spinal meningitis when he was a baby, Forbes has loved music as long as he can remember, according to his website. He grew up with musical parents who taught him to appreciate aspects of music he could enjoy — such as rhythm, beat and cadence of the lyrics — with the help of hearing aids.

Now Forbes, 32, is a groundbreaking hip-hop artist. Since 2012, he’s performed for more than 150,000 people in 60 cities, according to The Washington Post. His performances and videos feature simultaneous rapping and signing, bridging the gap between hearing and deaf audiences and bringing his deaf fans a musical experience they may not have had before.

Flame

Formed in 2003 in upstate New York, this monumental rock band has been performing together for more than a decade. They’ve toured the U.S. and the world, even performing at the Parthenon in Athens, according to ABC News. All of Flame’s 10 musicians live with intellectual or physical disabilities, including Down syndrome, cerebral palsy, autism, blindness and cognitive delays.

“When I was 3 years old, I was diagnosed with autism. And the doctor told my mom that I couldn’t speak,” Michelle King, a member of the band, said in the Following Flame documentary. Now, she’s the band’s lead vocalist and guitarist. Maria Nestle, Flame’s band manager, sums the group up best in that same documentary: “They’re awesome musicians who just happen to have disabilities.”

Sujeet Desai

When Desai, who has Down syndrome, was 9 years old, he learned by play the violin to improve his hand-eye coordination. Now 33, he’s a renowned musician who can play seven instruments, including the alto saxophone, clarinet and piano, The Buffalo News reported. He’s gone on to perform all over the world.

Currently living in Niagara Falls, New York, Desai continues to utilize musical performance as a way to overcome the limitations of his disability. He also enjoys playing at local community centers, senior centers and hospitals to bring happiness to people away from their families, according to his website.

Sean Gray

Gray, 32, is the lead singer in a punk band called Birth (Defects), and performing and experiencing others perform music is his passion. He also has cerebral palsy and uses a walker, music venues not accessible to people with disabilities hugely impact him. “To me, it’s no different than any other kind of oppression,” he said, according to The Village Voice.

Grey recently launched “Is This Venue Accessible?” — a site where people can share which venues are and are not accessible to those with disabilities. He’s also asking bands to refuse to play inaccessible venues in an attempt to pressure those locations to make necessary changes, The Village Voice reported.

Pertti Kurikan Nimipäivät (PKN)

PKN is a Finnish punk rock band comprised of four middle-aged men with intellectual disabilities. Formed in Helsinki in 2009, the band developed a cult following after they released their first demo, Kallioon, according to a press release. They garnered more popularity after The Punk Syndrome (trailer below), a documentary about them, was released in 2012.

Now, the band has the chance to perform in front of millions: PKN made it to the Finnish qualification round of the Eurovision Song Contest, The Mighty reported earlier. 180,000 viewers watch the televised music competition every year, according to its website.

Megan Washington

Washington has released three albums, won two ARIA awards (the Australian equivalent of the Grammys) and her music has been featured on Girls and Boardwalk Empire, according to NPR. The singer-songwriter has lived with a speech impediment since childhood. In the moving TEDTalk below, Washington reveals how her stutter motivated her to delve into singing and songwriting and how she expresses language through song. Then, she launches into a breathtaking performance.

“Singing for me is sweet relief,” she says in the video below. “It is the only time that I feel fluent.”

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Why I Don’t Care If You’re Tired of Me Talking About My Special Someone

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Some people get tired of hearing about how much I love my husband.

I don’t care.

Some people get tired of our mushiness. 

I don’t care.

Some people get tired of our public proclamations of love.

I don’t care.

Why? Well… as a mom of a child with some special stuff going on, there are times you feel isolated.

As parents, we do what we have to do. I’ll admit, though, it’s a bit easier with someone by your side. My husband is just that. After years of holding it in, I nearly burst into a thousand pieces two summers ago. He held me; I cried. I couldn’t say what I needed so badly to say, what I’d wanted to say for years. He said, “It’s OK, say it. You know I love you no matter what you have to say. Let it go… go ahead.”

It came flying out. I was so angry. I was so thankful that I had my son, Tucker – but so angry that this is his life. So angry that he has to deal with this every day. I was so mad at God for doing this to my child. Tucker would never be able to know what it’s like to have your brain just work. This will always be a battle for him. Always. Every. Single. Day. And it feels horrible to say all of that. It feels horrible to say you wish your child was… um… normal.

And then I wanted to take it all back. Because I didn’t mean it. But, I did. I meant every single word. But I love him – and if I truly love him – why would I want him to be different?

That’s true life, folks. Ugly and Beautiful.

My husband held me as I sobbed. He kissed my forehead and said, “It’s about time – you don’t have to hold this in. You don’t have to do this alone. When I married you a month ago I promised you that you would never be alone. Ever. For any part of life. This is included. You’ve been holding this in for 10 years and never felt loved enough to say any of it to anyone else. Say it all to me. Being alone isn’t just physical, I meant emotional. You do not have to deal with your feelings alone, lay them on me. I want them.”

In that moment, I knew I found my support, and that’s the very reason I don’t care if people are disgusted by our love.

Find your someone. Maybe it’s…

your partner

your husband

your best friend

your wife

your mother

your aunt

your uncle

Find yours. The person who you completely trust, the person you can say anything to, the person who won’t judge you, or fix it for you, or give you some piece of advice that doesn’t really make a difference. That person. Find them, and then – take care of them – because your soul will never feel alone again.

For the rest of you? It’s pretty simple.

Be someone’s someone.

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Read more from this journey on 366 Days of Autism.

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