Dear Younger Me, Here’s What Happened to Your Son Who Didn’t Speak Until He Was Nearly 4

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Every year I like to post something for my family and friends, to share what I’m feeling inside as we raise our son with autism and our daughter, who was diagnosed with ADHD and severe OCD. The one thing that resonates each year is that I’m lucky to be on this road. It’s paved with so many stories and love from others. Here’s this year’s letter that I wrote to my younger self…

Dear Past Karen,

Greetings from age 48. I bet you’re sitting on the floor of the living room right now folding laundry. Am I right? I can see you now. Jake is playing cars in his room, and Julia is watching an Elmo video with you. I figured you have a few minutes before the next therapist arrives for Jake’s speech session. I know the autism diagnosis hit you hard last year. I’m writing today to tell you about how things turned out and to let you know that most, if not all, of your prayers have indeed been answered.

In just a few months, Jake will start school at a place called Variety Pre-School. He will be placed in a class with other children on the spectrum. I know you’re going to be super nervous about letting him go, but trust me, it will be the best thing that ever happens to him developmentally. He starts to speak in sentences after eight months. He’ll stay at Variety for kindergarten, which turns out to be the best decision you and Ernie make educationally because it gives Jake that extra little push he’ll need for Central Boulevard Elementary. That’s right, both of your kids will attend the same elementary school as you and Ernie did.

Jake starts CBS in first grade and blossoms. He develops an incredibly shiny personality and is crazy about school. He starts to play school in the basement den every day. Your mom helps by setting up a classroom at her house too! Thank God for Grandma and Grandpa. They’ve pulled you through your darkest days since autism knocked on your door. Before you know it, Jake will graduate from CBS and you will be wondering why you ever cried yourself to sleep every night for two years and sometimes refused to leave the house or answer the phone. You woke up one day and started to give back at Variety. You join the PTA and start taking on more and more projects that connect you to school.

By the time JFK Middle School comes along, you wonder how you ever survived without some of your friends and their families. You realize that autism is a blessing rather than a burden. I won’t lie; those days where you feel cold and lonely do return from time to time, but they no longer control you. You control them by remembering that Jake needs you and Ernie to be strong for him and his future.

unnamed (20) Jake is now a sophomore at BHS and is the same age you were when you met Ernie. He’s a typical teen complete with worries about what his clothes and hair look like or who will talk to him at lunch. Does he still have rough days? Sure he does, but you’ve learned so much from the doctors you met throughout the years that you learn to get though these rough patches. Ready for this? Jake plays on a basketball team and is a Boy Scout. He volunteers at the District’s Summer Special Ed program as a counselor. The staff says the kids love him! This is the boy who never spoke a word until he was nearly 4 years old.

Julia has blossomed into a 13-year-old lady right before your eyes. True, she’s had her challenges, but she’s a treat. You love to shop with her and take long car trips so you can chat about every little thing. She and Jake will fight like cats and dogs, but they love each other more than you will ever know. Ernie? He’s a miracle on earth who literally picked you up and dragged you through each day. I seriously doubt you would have made it to where you are without him.

I’ll let you get back to the laundry. Elmo is almost over and you need to get Julia a snack before the speech teacher arrives. Just remember, life is good my friend. You’re blessed with so many gifts. Autism can never take them away from you.

Just thank autism for helping you to realize how special life really is.

Love,

Karen

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This Is How I Feel About 40

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About ten years ago, I watched an episode of Dr. Phil that changed my life.

Well, maybe not my life exactly, but it changed a lot about how I feel about myself, which for most women is pretty much the same thing.

Dr. Phil was talking with a young couple about to get married. The woman was really, really pretty — slender with long legs and a short skirt — and she was worried that as she got older her fiancé wouldn’t be attracted to her anymore, that he wouldn’t think she was beautiful. She complained he noticed other women.

Well, this is going to be good, I thought to myself. I’d been nursing Jack in our old blue recliner, and I settled back into the chair and waited for Dr. Phil to light into the guy and tell him to straighten up, that he had a beautiful girl in front of him and he should stop admiring women who walked by him on the street or in the store.

But he didn’t.

Instead, Dr. Phil turned to the beautiful young woman, and in his Texan drawl he said, “Girl, there is always going to be someone prettier than you out there.”

After that episode, every time I felt fat or ugly or insecure or old or whatever, I thought about that line. There will always be someone smarter and prettier and thinner and younger than I am, so I might as well just get over it and get on with it.

Yesterday I turned 40.

When I think about being 40, I feel a combination of giddiness and relief and joy. I feel as though I’m finally here, like I’ve arrived at some long-awaited destination.

This is my body and this is my face. My feet are long and skinny and my second toe is bigger than my first. I don’t like peas and my favorite color is bright pink. I like to exercise in the morning, and I can’t pass up a video about dancing flash mobs.

I’m in bed by 10 almost every night. And I’m not going to feel bad about that anymore. I’m not going say dumb things like, “Oh, I have to go to bed early because I’m old.”

I don’t go to bed early because I’m old. I go to bed early because I wake up at exactly 5:55 pretty much every day. The first sound I hear in the morning is Jack slamming his drawer after he takes out his clothes. As soon as he closes his drawer, Wolfie starts to bark from his crate. Even on the weekends this happens, because neither puppies nor autism care much about sleeping late on Saturday.

And through the course of the day, I sweat and I kiss and I laugh. I wave to people and I sing with people and I switch the laundry from the washer to the dryer. I argue with Joey about why he should do his homework before he rides his scooter, and I quiz Rose on her spelling words and Charlie on his math facts. I try to teach Henry how to whisper.

I go to bed early because I fully live my day, a day that begins with the closing of a drawer and a short, sweet bark.

To me, 40 means no more apologies.

I’m never going to have six-pack abs. Want to know why? Because I don’t care about having six-pack abs. Research shows that having a washboard stomach has little to do with whether you do Crossfit or Bikram, and everything to do with how many cupcakes you eat on your birthday. (Two, in case you were wondering.)

I choose the cupcake over the abs. I choose this.

Besides, me and my no-pack abs made people. Almost 45 pounds of people – actually, 44.35 pounds, if you want to be exact.

I made a boy who has the same long, skinny feet as me. And he runs like the wind.

I made four brothers and one sister. I made a group of children who are fresh and naughty and funny and alive. And whenever I feel restless or nervous or overtired, I remind myself that I am the mommy.

This statement is so simple, and yet such a profound example of my truth. I am the mommy.

I’m the only person who can do this job, who can teach them what it means to be a family and show them how to fold a fitted sheet and feel their warm foreheads in the dark of the night. I’m the only one who can tell him, “Your autism makes me smile.”

(OK, OK, the truth is at 40, I still don’t know how to fold a fitted sheet. But I don’t care anymore.)

I made a girl who loves peas.

I’ve lived with autism for ten years now. This is a quarter of my life. Twenty-five percent. One fourth. Three thousand, seven hundred and 63 days, if you want to get all spectrum-y precise about it.

And you know what? It hasn’t killed me. In fact, in some ways it has brought me to life. It has awakened every instinct I didn’t know I had. Because of autism, I listen when there’s silence and look harder in the darkness. I hold my breath for each new word, new phrase, new expression. Mom. Wolfie is for me good.

I made a boy who thinks in color. I made Jack.

Lately it seems like I can’t watch ten minutes of television without Oil of Olay coming on to remind me I have crows feet and wrinkles and laugh lines.

And every time I see the commercial I think to myself, laugh lines? I’m going to worry about those? They are from laughing. I smiled and laughed and giggled for each and every line. For a few of them, I laughed until tears rolled down my face.

Besides, both my parents were heavy smokers. I’m lucky my face doesn’t resemble a beanbag chair, considering all the hours I spent in the back of our orange station wagon while they puffed away on their Marlboro Lights and Now Ultras.

img_4727-e1411414682582 I’ll take the laugh lines.

Right about now I think I’m supposed to say something about how I married my best friend. But to be honest, Joe and I aren’t really friends. We weren’t friends when we met and we weren’t friends when we got married and we especially weren’t friends when he ate all those Oreos.

I’ve been married to this man for 16 years and I’ve known him for 20. I don’t want to go showing off with my math skills, but this is half my life.

I married him because he was tender and kind and strong and very, very handsome.

I married him because my stomach did a little flip whenever he walked in the door.

Twenty years later, he’s still all of those things, and my stomach still flips whenever he walks in the door.

And with a lot of laundry and Bisquick and patience and no patience, we propel this little family forward every single day. We do it together even when we don’t feel like doing it together. We argue about it and we compromise over it and we laugh until our sides hurt.

You know what? Maybe we are friends after all. At 40, I’m still figuring it out.

I wonder what happened with the couple on Dr. Phil. I wonder if they ever wound up getting married or having kids. I wonder if she feels pretty. I hope so. I hope she came to terms with the idea of aging.

To me, reaching 40 means going to sleep early so I can watch Jack mix the batter for his beloved waffles in the early hours of dawn, with a round, soft puppy on my lap. It’s rolling the long, smooth sheet into a ball and stuffing it into the closet, because life is too short to spend folding. It’s forgiveness and peace, friendship and marriage.

It’s knowing my truth and choosing the cupcake. Or two, if I feel like it.

This post originally appeared on CarrieCariello.com.

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To Several Strangers I Saw on the New York City Subway, Thank You

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Although I’ve been living in New York City for over 6 months now, I still get overwhelmed by it — the pushing and shoving on the subways, the constant vigilance, the dirt and grime and overcrowding. But every once in a while a moment pulls me out of the day-to-day chaos and forces me to appreciate one of the benefits of having so many people crammed together: the chance to see humans interacting constantly.

I’m occasionally blown away by the simple acts of kindness I witness.

Last week I was hurrying off the subway when it happened. People were elbowing their way up the stairs towards the exit when there seemed to be a traffic jam. I could see the blockage source was a woman who had a disability or injury. She was making her way up slowly and using a cane.

She was also trying to manage some shopping bags and a rolling cart that was laden with groceries. I was stuck several feet behind her, but I made a mental note to help her with her load as soon as I was near enough. But, because of the beautiful and generous world we live in, I didn’t get the chance.

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As I watched, about five people simultaneously came to her aid. One man in an expensive-looking business suit offered his arm, a woman and her young daughter took the bags and several other onlookers took charge of her cart, wrestling it to the top of the stairs for her. When the woman was back above ground with all her belongings, the helpers dispersed immediately. They went their separate ways without so much as a nod to one another.

This was not one of those ostentatious moments of generosity where the smug do-gooder greedily accepts thanks and admiration from the person they’ve helped. This was just New York City transit business-as-usual. In fact, many of them barely even broke their stride to help.

I’ve witnessed this kind of casual kindness before, and it’s always at the moment when I need it most. It’s just a little reminder that beneath all the grime and chaos of this metropolis, there is a collective heart of gold.

I’m so thankful that I get to make my living writing about these small but powerful acts of kindness. They make the world a brighter and cozier place to live in. And since The Mighty is giving thanks all month long this November, I want to thank those people and everyone else in the world who helps their fellow man without thinking twice. And you, for finding joy in these moments, reading about them and sharing them with people you care about.

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected]

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My Kid Is the One Trying to Get Inside Your House This Halloween…

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It happens every year.

There’s a lot of prep and apt timing on our part of getting the costume on (and feeling right). Sometimes only half a costume actually gets worn. There are no wigs, masks or make up. Usually our prep includes several weeks of practice trick-or-treating at both our home and therapy. Due to the fact that in the past Timothy had absolutely no language, there was a bit of explaining at every door by Dad.

“Timothy has autism and doesn’t use words,” which gravitated to just a loud, “Thank you,” to eventually just a wave and smile if we got far enough. By “far enough,” I mean around the block without a meltdown.

While this year, he’s gained the ability to actually say “trick or treat” most of the time, he lacks the understanding and social graces of the average grade one kid. Autism’s kinda like that.

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So this year, I’m warning all of y’all in West Brant that you may have a home intruder on your hands. He’s about 3-foot, 11-inches tall, 50 pounds and will be dressed as a charming little Batman wannabe, who may or may not be wearing a mask. He’ll be excited, and he’ll be loud. He may try to run inside your house, but please have patience; he means no harm. His daddy is there and will be watching closely nearby trying to make his night as successful as possible.

Because Halloween should be enjoyed by all kids… kids with autism, Down syndrome, leukemia, cerebral palsy, kids who are walking or in a wheelchair — whatever their exceptionality may be. They are all kids.  Please be kind and treat them the same. Different is not wrong or weird. It’s just different.

Have a safe and Happy Halloween!

This post originally appeared on The Book of Timothy.

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Photographer Combines Portraits With Handwritten Letters to Change the Way We All See Epilepsy

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James Smolka was photographing the effects of Hurricane Sandy in Lake Hopatcong, New Jersey, when he first met Scott*, a man whose home was severely damaged during the storm. Scott, pictured below with his wife, asked Smolka, 28, what else he photographed.

Smolka told him about his project, “Falling Sickness,” a series of portraits and letters from people who have epilepsy. He’d been diagnosed with grand mal seizures in the third grade and underwent brain surgery in high school; today, he takes medication to control seizures. He set out to show the faces of epilepsy — how the nervous system disorder doesn’t discriminate against age or sex, how someone you know may live with it without your realizing.

Scott stood shocked — not because of the project, but because Smolka so openly talked about his epilepsy. Scott rarely spoke about his own experience with it. His own diagnosis felt shameful, like something to hide. A lack of control over his own body wasn’t something he wanted people knowing about. Now, he stood before a person who could say, “I’m epileptic” without hesitancy. For a second it made him smile.

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“Falling Sickness” has several purposes. For people with epilepsy, the photo series offers comfort — comfort in knowing others feel the same way about the disorder. Comfort in not being alone. It’s a chance for people, like Scott, to talk about their condition without embarrassment.

“There’s nothing wrong with having epilepsy. It’s not fun. It sucks,” Smolka tells The Mighty. “But, there’s nothing we can do. Each day we’re alive, we have something to be thankful for.”

One in 26 Americans will develop epilepsy in their lifetime, according to Citizens United for Research in Epilepsy (CURE). An estimated 3 million Americans and 65 million people worldwide currently live with the disorder.

“I want people to see how common it is,” Smolka says. “Most people just view someone with seizures as someone with problems. An everyday person could be epileptic.”

Below, you can view more photos and notes from people with epilepsy. Visit Smolka’s website for more.

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*Scott’s last name is being withheld for privacy. 

h/t BuzzFeed

 

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I Used to Pray I Wouldn’t Have a Special Needs Child

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IMG_6884 I never thought I’d be a special needs mom. In fact, the thought of that used to absolutely terrify me. I remember reading about all of the things that can go wrong when we were trying to get pregnant, and just begging God to give us a healthy child. Praying that I’d rather have no child than one with special needs. I was clueless, and honestly, I make myself a little bit sick. I was absolutely terrified of having a kid with a disability. To the point where I literally cried daily when I was pregnant with Knox, just worrying about him. Looking back, I am so glad God didn’t listen to me. I’m so glad Knox is here. Because really, I was the one with the problem, not him.

I had no idea what it would be like, and how could I? I was close-minded and had no personal experience with anyone with special needs, aside from seeing a person with a disability every once in a while out in public. I just didn’t know. In fact, I had no idea. That’s not to say that I don’t wish Knox could instantaneously be rid of autism forever — because, yes, that would be fantastic for him to not have to struggle. But the fact that he has autism doesn’t make him any less of an amazing kid. It doesn’t make me want him any less. If given the choice, I’d choose him exactly as he is, every single time. Because knowing him is so much better that not having a clue.

Autism is a weird thing. It makes me furious one second, makes me laugh the next, and right when I think I have it figured out, it says, “Ha! No you don’t!” This has been a super crappy parenting week at our house. Knox is getting in trouble at school for the first time ever, and he’s being defiant at home, as well. There’s been lots of running off, swatting, kicking and even spitting. I don’t know where this is coming from because Knox normally has the best disposition ever. He is highly stubborn, and my only thought is that he’s just reaching an age where the frustration over his communication skills has pushed him a little over the edge.

Also, I think he just plain misses me. I work full-time, and by the time I get home, I have two hours with him before he goes to bed. Most moms know that the hours between 5 and bedtime can be the witching hours where your kids lose their minds and cause you to lose yours right along with them. I feel like so much of my evening time with Knox consists of disciplining him, and it makes me feel awful. My guilt eats me alive sometimes. I tell myself I need to be this great parent, do lots of fun outings and activities and spend tons of quality time with my children. But then reality hits, and I feel like all I have to offer them are a couple of worn-out hours of my life, where I’m no fun to be around at all. There have been a lot of tears lately (mine) and yelling (me) and hitting (Knox) and frustration (everyone).

And the thing is, there’s no magic answer. There’s no perfect solution. Parenting is always hard. I don’t care if you stay at home, work full-time, have 10 kids or one. Being a parent is the hardest job on the planet. Adding any sort of special circumstance only compounds the stress. I’m learning in all of this, through this hard season, that all I can do is pray and ask for God’s help in all of this. To seek His face and just bury myself in His word. To pray that I don’t screw this up too much. To pray that God removes the guilt from my spirit. To pray that God revives me and gives me the energy I need to keep up with this kid. And to pray a prayer of thanksgiving that He knew all along just the boy He was going to give me.

Because even when it’s hard, Knox is worth it all.

This post originally appeared on My Coffee Is Cold.

Read more from Jessica Wyndham on The Mighty:
He Doesn’t Care… Why Should I?

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