I’m the Mom I Used to Judge in the Store

433
433

10887413_971617046199642_4888119802829199023_o I am that mom.

The mom I judged before I was even a mom at all. The mom who made me think, Why are you out in public, sister? You need to take that crazy mess of a child home and feed them or put them down for a nap or something. The mom I knew must just ignore her kid or rarely dish out discipline.

Now I am that mom. I am the mom at the Home Goods store with a child screaming so piercingly that you turn your head and can’t help but mutter jeeze. I don’t blame you; his most intense screams still make me jolt. I am the mom not yelling at her child, not disciplining in this moment, not instantly gathering our mess of a family to run home. We’re past the point of all of that. I am the mom who gathers her screaming son, set off because I said he couldn’t have the saxophone toy. Sometimes I buy him something to prevent a moment that I don’t always have the strength to weather. We sit for a minute on the floor and I hold him so tight that my love penetrates through to some of his pain. We rock back and forth for a minute while I shoosh in his ear to calm him. It’s a Saturday and the crowd of people move so fast all I see are feet in a blur. There are so many moments in parenting that I have no idea what the hell I am doing. Moments that I wish someone could tell me the right thing to do. This moment is not one of them.

I was born to do this.

We sit and rock for a few seconds until the screaming falls in intensity. His face is purple and covered in tears and sweat. His hands shake in frustration and anger. He is certain if he doesn’t get this toy he simply won’t survive. I pick up his screaming, bucking body to carry him outside. He is getting so big and it’s getting harder to do. I gather us up while my husband goes up to the register to pay. We sit out front where the cool January breeze cuts through the sound of his screams. Toy! Toy!! TOOOOOOOOOYYYYYYYY!!!!!!! Greyson yells at me in a voice filled with rage and frustration. He gets louder, hoping it will make me understand. Not being able to really talk leaves you constantly feeling misunderstood. He’s sick and tired of feeling misunderstood. Sometimes having autism really sucks.

Some look over in alarm. But most look with the kind eyes of love and support. Some look with a sympathetic smile that says, “I’ve been there too.” However, my focus is on my son in my arms. He is beginning to calm. His sobbing transforms into exhausted shuddering.

It hits me. I am that mom.

I am that mom, and these are strangely some of the most sacred moments of parenting. When it isn’t easy, but it’s still so good. When God reveals himself to me through my boys. I think back to that mom that I judged from years ago, and I understand important things about life I didn’t know then. I’m grateful for the shift in perspective.

I am that mom, and I am so lucky.

This post originally appeared on Life With Greyson + Parker.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

433
433

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Why I Decided to Pay It Forward in the Autism Community

252
252

“We make a living by what we get, but we make a life by what we give.” — Winston Churchill

This week my nonprofit organization announced that we were giving out six scholarships for college to adults with autism. When I originally started reading the student applications last year to choose the winners I was overwhelmed with excitement. This was one of the best applicant classes we’ve ever had. I was truly impressed with everyone’s backgrounds and the bright young adults we have out there in our autism community.

With their wins we’ve now been able to give out 13 scholarships in the past three years. As an adult on the spectrum, I look back and wish I had the opportunity to have more autism scholarships like this to apply for when I was in college. As the pool of applicants increases I feel blessed to see how far the reach of this scholarship is.

Everyone who I work with has been on cloud nine with the announcement. With all of this though, I’ve been thinking more and more about the thought of giving and “paying it forward” going into 2015.

unnamed

When my new book, “Autism and Falling in Love,” came out, I kept this mentality by donating 50 percent of the proceeds to Autism Speaks and 50 percent of the proceeds to Best Buddies. I’ve always been passionate about autism awareness and the woman I dedicated my book to had a passion for Best Buddies.

The first time I heard about Best Buddies was in 2014 when I went to a speaking event at The College of New Jersey where they had their own chapter. Several of their members were in the audience for my presentation and it was truly amazing to hear their stories afterwards. This was my favorite speaking event I had in 2014. There was also someone who made a lasting impact in my life that came to the event.

When I started to read more about Best Buddies while writing the book I became instantly hooked on their mission. When I was in high school I was a photographer for Special Olympics New Jersey. To this day I still mentor a young girl who’s involved with that organization. Knowing that Best Buddies helps adults with disabilities, a similar mission to Special Olympics, is something I truly admired.

So in return I want to do something to help their chapter. I have decided to give my speakers fee from my appearance at The College of New Jersey to Best Buddies to help sponsor their chapter and expand their future opportunities. The relationships I made with those in the group were something special and I thought about all the good that it could do for them.

More importantly, I thought about all the hardships I had gone through in the past year and thought to myself how this could help some truly amazing individuals. When we started a dialogue with their club they told me they were doing several fundraisers to raise money and that sealed it for me.

Philanthropy has always been an important part of my life. Ever since high school I’ve been involved with volunteering and fundraising for non-profits to try to give back. Today, I’ve been blessed with the opportunity to travel the country as a national speaker discussing how I’ve been able to overcome countless obstacles with autism.

By giving my fee for this speaking event to their group, I hope I can continue to pay it forward for more philanthropy. My goal now is at the end of each year to give one of my speaker checks to a different non-profit/organization that could truly use it.

Now, for those reading this, I hope you consider ways you can “pay it forward” to others in 2015. I know with our economy how tight money can be at times however anything you can give from your money or your time could make a world of difference in the lives of others. I went from having very little as a kid to now having more and more of my dreams coming true everyday. Last year I also realized how fast some of the things in your life can be snatched away from you. That’s why I don’t want to waste another minute not giving back and showing the people I care for how much I love them.

I hope all of you out there will try to do the same. If you need help on how to get started I’m just a message away from my Mighty author page.

“Sometimes you will never know the value of a moment until it becomes a memory.” –Dr. Seuss

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

252
252
JOIN THE CONVERSATION

This 8-Year-Old Has Cancer, But That’s Not What’s Most Remarkable About Him

23
23

Tyler West, 8, was diagnosed with acute lymphoblastic leukemia last year, according to the video below. He took a brief break from teasing his mom, snuggling with his sisters and playing Minecraft to tell us about it, cracking jokes and laughing throughout the entire 11-minute video.

SoulPancake shared Tyler’s story as part of Unstoppable, a four-part series in partnership with St. Jude’s Children’s Research Hospital in Memphis, Tennessee. The heartwarming video highlights Tyler’s relationship with his doctors, his supportive family and, most importantly, his awe-inspiring humor and positivity.

It’s a lot to put on an 8-year-old boy,” says Angela, Tyler’s aunt. “But he’s so strong and he’s so joyous about it. He does what he has to do to get through it, and he does it with a smile on his face.”

Watch SoulPancake’s portrait of Tyler’s journey in the touching video below:

 

h/t FaithIt

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

23
23
JOIN THE CONVERSATION

What It Feels Like to Watch My Son Have a Seizure

834
834

His eyes grow wide with terror as his body stiffens into a paralytic state, his mouth turning into a perplexed and focused frown. The epileptic beast overtakes him and sucks at his breath as his pulse races and his skin turns blotchy.

Only a few seconds before, he was laughing and playing, enjoying the activity of the moment and the interaction with family around him. Now his fearful eyes search his mother’s for help and relief, silently begging her to release him from this entrapment.The beast in his brain consumes him, surging an electrical storm through his tiny body. Seconds pass, then a pause–the beast gets distracted for a moment, the little body relaxes as the initial attack subsides.

They wait, peering into each other’s faces, knowing what is coming.”Make it stop, Austin. Make it stop,” she commands. Seconds later the beast roars to life again with repeated waves of spasms, throwing his head forward, splaying his arms in the air, thrusting out his legs, picking his limbs up only to slam them down again against whatever surface is closest–his head rest, the metal bars on his wheel chair, the hard plastic foot rest–bruising him in its wake. His body shakes and shudders under the violent attack. The spasms might last anywhere from 30 seconds to almost three minutes, an eternity to his mother as she watches him gasp for air, eyes still crying out for help, throat releasing moans intermittently as his body allows, his breath shallow as the beast keeps sucking it away.

He begins to turn blue as the beast tries to stifle his breath, sitting on his lungs causing them to seize with the rest of his body. She lifts his arms up and down over his head, blowing in his face, encouraging him to take a breath. Fervently she whispers, “Breathe, breathe, come on, breathe.” She starts to pray, but the words won’t form in her mind. She’s prayed so many times. She saves her breath, willing it into him. Locating the phone in her mind, she visualizes dialing 9-1-1.

At last, he inhales a deep breath and exhales a moan, pink returning to his cheeks. His body flinches in the aftershocks as the beast begins its release, retreating to its hideout in the recesses of his brain.”You did it, baby. It’s almost over. Be tough,” she encourages, feeling the all too familiar relief wash over her. He moans and rolls his head to the side, anxiously seeking rest and sleep in order to recover.

Her heart hurts for both of them.

IMG_0737

This post originally appeared on “Where are My Mary Janes?

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

834
834
TOPICS
JOIN THE CONVERSATION

How I Learned to Always Trust My Instincts When It Comes to My Child

287
287

When the school psychologist kindly explained that my three year old daughter rated mild to moderate on the autism scale, I wasn’t even surprised. I went into my daughter’s evaluations pretty much knowing that something was going on with her. Still, I would be lying if I said I didn’t have a moment where I felt a bit weepy, even though I expected this diagnosis. In that moment, I mourned a loss of something that I never had to begin with– a made up version of childhood perfectionism. Then we brushed ourselves off, and life was exactly the same as it was before the word autism was even uttered by her.

unnamed-1

The truth is that I always knew that there was something a little different about my daughter. The first time I saw her, she was sticking her tongue out at the world. On the first day of her life, her grandfather stopped what he was doing, looked up at the ceiling, and asked her, “ What are you looking at?” In case you’re wondering, she was looking at the fluorescent lights on the ceiling.

Sleep was something she simply couldn’t master. She had almost no capacity to self regulate. She was the most serious infant I’d ever seen in my life. She didn’t smile until she was over 6 months old. She never crawled, walked early, and pretty much immediately afterward would spend hours jumping up and down while flapping her arms. She lined things up all over the house, on any open space she could find. She ignored people– she had no use for them at all. She would run away from us if we didn’t hold her hand. If you foolishly released her hand, she’d run as far away and as quickly as she could.

You would think that since I immediately recognized these behaviors, that diagnosis was both immediate and easy. It wasn’t at all. The problem was other people, who I’m sure had good intentions, worked very hard at making me doubt myself. Ranging from poo-pooing her behavior, to down right anger and hostility. I had numerous people telling me that these things were normal. These were people in my personal life, with some of them actually being healthcare professionals. Bitter arguments would ensue where I would explain that every time I plugged in something online about my child, that Dr. Google’s first entry was autism. Each time. Every time.

It was the same even with people who were not a part of my personal life. Her pediatrician, who I still like a great deal, didn’t catch it. When I brought up her very poor sleeping habits, I was told that she was “on the extreme side of normal.” When I brought up her constant running and jumping up and down, I was told that she probably had ADHD, but that there was nothing that could be done for her at such a young age.

The truth was that she hit her developmental milestones. Could she say two or three word sentences? Absolutely. It just wasn’t productive language. She would just repeat the same sentences over and over again. She couldn’t even answer a yes or no question. Could she make eye contact? Sure, she could make eye contact. It was just fleeting, intermittent eye contact. Sometimes, someone would be talking to her, and she wouldn’t even turn her head to look at them. But yes, she could make eye contact if she wanted.

This ladies and gentlemen, is how a child “falls through the cracks.” This is how children who can “pass” don’t get the services they need. Autism is almost like a dirty word to many, and people have a preconceived notion of how someone with autism should act. In asking people if they could tell something was “off” with my child, the response would commonly be yes, followed by an immediate: “But I don’t think it’s autism.”

I don’t fault people for that response. It’s what society has conditioned us to think. For all I know, if it hadn’t been my child, maybe my response would have been the same.

If I had it to do all over again, I’d trust myself a little bit more. I would have pushed a little harder. I wouldn’t have allowed doubt to creep into what I obviously saw with my own eyes. I’m fortunate because even though there was a slight delay, my child will be getting services at the end of the month. She is 3-years-old. Still fairly early, but I could have got her in at least a year ago if I had just stopped arguing, and just started doing.

Parents, always trust your instincts. No one knows your baby better than you.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

287
287
TOPICS
JOIN THE CONVERSATION

I Don’t Know Whether My Son Has Autism or Not, But These Are the Things I Do Know About Him

77
77

I see a lot of stories on here about autism spectrum disorder. I get it, I do. I know that if you have a child who is diagnosed you want to share their triumphs and tears and it helps to know you’re not alone.

But I have a feeling I am alone. So many people talk about their 2, 3 and 4-year-olds having autism. My son will be 4 next week. I don’t know what he is. I know he has a speech delay. I know his fine and gross motor skills are excellent. I know his vocabulary is about 100 words, maximum. I know he swats at his sister when she snatches his toy and runs off with it. I know my son smiles, and laughs, cries and likes plastic animals.

unnamed-1

What I don’t know is whether he has autism. I’ve thought about seeing a doctor, a specialist or someone in the school district to find out. I’ve discussed it at length with my husband, my mother, my sister, my friends. I’ve looked up information online, I’ve bought books, I’ve had one-on-one conversations with parents of children with autism.

I want my son to be 4. I don’t want him to be labeled, and boxed, and to have every tiny movement be defined by a word or a diagnosis. I don’t want to excuse his behavior or rejoice in it because we found out what makes Nolan just Nolan. Especially not this young.

A diagnosis will be with him for the rest of his life; there is no rush for us to get a piece of paper with a word someone needs to hear to explain him. He gets services because of his delay. More services than he needs– we scaled back his speech therapy because it wasn’t working and forcing a 3-year-old to spend upwards of 6 hours a day on “academics” is ridiculous. He needs to be able to be a child. He needs to be able to find his voice, even if he’s not using words. He needs to know that mom and dad will let him find his own way without a pigeon-holed existence.

It has its challenges. When people meet Nolan, and he acts more like he’s 2 than 4, they’re confused. I say: he has a developmental delay, so he doesn’t talk much. They don’t get it. They stare at me, or stare at him, and wonder why he isn’t like every other 4-year-old they’ve met. Its tricky, and its heartbreaking at times. But I know that simply defining Nolan for other people isn’t what’s best of him or us.

I’m proud of my son. I’m even proud of his impairments, because it shows he’s thinking, he’s evolving, he’s finding ways to adapt in the world around him. I applaud all of you for your work with, and love for, your children. Let’s step back for a moment sometimes and not let a diagnosis define them, but let them do that for themselves.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

77
77
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.