The Secret I’m Ashamed of as an Autism Mom

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As an autism mom, I probably have a ton of secrets I don’t even know about. I don’t realize they’re secrets. But one stands out, and I’m not proud of it. I desperately want to be perfect, superhuman and without emotion. I want to be unabashedly proud 100 percent of the time. I want to stand up, stand firm and stand strong always. The truth is that’s not possible. I’m not perfect or superhuman. And I definitely have emotions. This secret shames me, even though it shouldn’t.

I’m sometimes embarrassed by my son’s behavior because of his autism, and I’m mortified by my embarrassment. That is the cold, hard truth as they say.  Whoever “they” are. I’m not, by any means, embarrassed by his autism. I need to make that clear. It’s not all of the time or even most of the time. It’s probably 1 to 2 percent of the time realistically.

And it’s the negative behavior that’s embarrassing, not his autism. It’s the screaming in the middle of the store. It’s when he throws himself across the floor at school, because I didn’t try to prevent the meltdown — I fought it. It’s him turning 8 and having behaviors that aren’t typical of an 8-year-old. At 5, a meltdown isn’t as obvious. At 8, it is.

And I hate it. I hate myself and that emotion. I hate that I let other people’s opinions or glances get to me. I can feel it coming, and I work hard to extinguish it as quickly as possible. Because it doesn’t help anyone, especially my son.

But I would be lying if I said it didn’t exist. I would be lying if I said it never crept in and engulfed me every once in a while. Usually I don’t notice or care if others are watching. I almost like it because maybe they’ll learn something from staring. Maybe they’ll see a mother love her son who has a disability. Maybe they’ll learn to be more tolerant. Maybe. I just don’t care. Most of the time. But, sometimes, I do. I confess.

I think many moms with kids with disabilities like myself might judge ourselves by a higher standard. A “typical” mom would probably be embarrassed if her child threw himself across the floor at school. But a special needs mom immediately feels guilty for that embarrassment. We feel guilty for a somewhat typical emotion. What could I have done to prevent it? What could I have done to help my child deal with the situation? How could I have eased his pain? How dare I be embarrassed because my child can’t help it! Then the overwhelming guilt pours over us like molasses, almost paralyzing us and impossible to wash off, hindering in the crevices for days or weeks…or years later.

It’s OK moms (and dads). We’re human. Our kids are often embarrassed, too. Next time we’ll be better. That will help all of us.

Tracy Boyarsky Smith.1-001

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? 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. Check out our Share Your Story page for more about our submission guidelines.

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To the Special Needs Parent Feeling Anxiety About the Unknown

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To the new special needs parent,

I was like you once, overwhelmed with sadness, anger, guilt, fear and anxiety regarding the unknown. The anxiety was so strong and overwhelming that it became an extension of myself. Questions whirled around in my head in what seemed like a non-ending loop: Will he walk? Will he talk? Why did this happen? How will we get through this? How will this affect his older brother? Will my marriage survive? Is he getting enough therapy? Is he getting too much therapy? Should I go back to work? Should I stay home?

I’m not going to lie — in the early days, I cried a lot, I slept very little and I isolated myself from my friends, family and even my husband. I felt alone in this new world, ostracized in this new life I did not recognize as my own. I struggled every day to reconcile the need to prepare for the worst and the need to hope for the best. I struggled every day to keep my head above water when it seemed like life just wanted to drag me down. I struggled every day to see the light at the end of what seemed like a long and dark tunnel. I’m not going to lie and tell you that one day the clouds parted and everything miraculously fell into place, because that only happens in the movies.

Yes, this journey will take you to difficult and unchartered terrain, but it will also take you to amazing and beautiful places. This journey will shed your expectations and notions of what it means to be happy and teach you to appreciate the little things in life. In the two years since my journey has begun, my son has taught me the true power of acceptance, compassion and love. I’m a better and stronger person because of this experience.

I will tell you that it’s human nature to project and overestimate the hardship we face, while underestimating our ability to cope. Our stories and experiences may all be different, but we all share one thing in common: thousands of years of evolution that have provided us with a genetically hardwired instinct to protect and nurture our children. MRI studies have even shown that a mother’s impulse to love and protect her child appears to be hard-wired into her brain.

Humanity has survived for thousands of years thanks to this instinct and our innate fight-or-flight system, which when faced with danger triggers the brain to secrete stress hormones, increasing our strength and alertness to deal with the perceived threat. For special needs parents, the perceived threat can be a part of our daily existence. In fact, one study showed that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. However, despite all of this, these mothers were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability.

So to you, new parent, I know you may still be wiping away the tears and struggling to see the light as everything is still fresh and new for you. But know that like the many parents who have come before you, you are resilient, you will grow stronger every day and not only will you learn how to cope — you will learn how to thrive in your new environment.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

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What These Everyday Disability Phrases All Have in Common

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BKrautwurst, August 2015 “Confined to a wheelchair.”

“Wheelchair-bound.”

I was born three months premature and had to be transported from one hospital to another when I was only 2 hours old to receive oxygen treatments. It remains a mystery whether my premature birth caused my diagnosis or vice versa, but regardless, I was diagnosed with cerebral palsy at the age of 15 months old.

“I don’t see your disability.”

“I’m attracted to people who are damaged goods.”

I’ve had surgeries and gone to therapy for years to become as mobile as I am today, and of course, my diagnosis has cost my parents and other family members a significant amount of money, worry and stress.

“Don’t become your disability.”

“Don’t let your disability stop you.”

But here’s the thing – I know I will always be looked at first and foremost as someone with a disability. Whether it’s the way I sometimes slur my words (which gets worse when I’m tired, stressed or alcohol-assisted, making for a great party trick!), the way I drag my feet when I walk or the look of intense concentration on my face when walking with hot coffee in my hands, I can’t hide my disability.

“I’ll pray for you.”

“Don’t ask him that!” says a mother to her small child.

If you haven’t gathered by now, these are all things I’ve heard in my day-to-day life, and here’s what the commonality in all of these statements is: they all imply the people saying these things would never want to live with a disability. 

Disability makes people uncomfortable because unlike race and, yes, sexual orientation, at any moment, within seconds, an able-bodied person could have that privilege taken away from them. So a society that doesn’t know how to cope with that reminder of their own mortality comes up with euphemisms like “special needs,” “challenged,” “handicapable” or my personal favorite, “differently-abled.”

But let’s cut the crap, shall we? I’m disabled. I have a disability.

And at the end of the day, I love my disability.

So should you.

My disability provides me with countless hours of laughter, icebreakers at parties and a way to empathize with people easier, among countless other things. My disability has contributed to the friends I’ve made over the years, it’s caused me to think of new ways to do things, and it forces me to be vulnerable to perfect strangers.

And while there are of course those days when all I wish is that I could take a morning jog and feel the wind rushing through my hair, I also know those aspirations are in some ways results of an ableist society that also doesn’t want to “see my disability.”

Feel free to do that, by the way – to not see my disability. It’s your choice, but you will miss out on so much beauty.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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When People Respond to My Child’s Diagnosis With ‘Everything Happens for a Reason’

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I’ve been asked many times what condition my son has. When I tell them, they look at me with a confused on their face.

Prune belly syndrome is a rare syndrome, and most people have never heard of it. Honestly, I had never heard of it either – until my child was diagnosed.

I start on how his bladder doesn’t work right, which leads to more questions and me telling them how his belly button has a hole in it that we catheterize him through. By the looks I’m getting, I start to wonder if I have something on my face. I fumble over words like ureter, hydronephrosis and creatinine. I need to remind myself to speak in layman’s terms because to them, I’m speaking a foreign language. I eventually just settle on the fact that he has kidney disease.

Then, they say it.

“Everything happens for a reason.”

What do you do at that point? What do you say?

My son’s condition has not been proven to be genetic. It is not environmental, and it isn’t due to something I did during my pregnancy.

It just happened. No explanation available, no reason.

I used to lie awake at night pondering that statement. I would think, what is the reason for this happening? Why us? Why this diagnosis?

It’s a normal phase to go through when your child is diagnosed with something you’ve never heard of. You want answers, and you want them now.

It’s been five years, and I’ve finally come to terms with the fact that there isn’t always a reason for everything.

I understand that a lot of the time, people just don’t know what to say or how to act, and sometimes they can say the wrong things. I get it, I’ve been there. We all have.

If I can offer any insight to help others avoid this phrase, it would be to say, “So what does this all mean?”

But sometimes you don’t need to say anything. Just listen, and if you have the time to listen, I have the time to talk.

Follow this journey on Medicine & Smiles.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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To the People Wondering About My Child’s Diagnosis

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We saw my daughter facing challenges at a young age and knew something wasn’t right. We spent many months seeing different specialists and doctors to figure out what was wrong. I spent countless nights crying, worrying about the future and comparing my child to others. I just wanted a diagnosis to find out what was wrong. As time went on, we started to get more definitive answers. We were finally given a diagnosis when she was a little over a year and a half.

Taylor Catino.2-001

You’re probably wondering what her diagnosis is. I won’t even specify what her diagnosis is; that’s not the point. She’s a human being just like you and me. That’s the point I believe we’ve forgotten in society these days. Why do we have to dwell on her diagnosis?

If someone were to come down with a disease, we wouldn’t introduce them as so-and-so with X disease. We would just introduce them by their name. Why does my child have to be any different? I want to enjoy my child the best I can just as any other parent. I don’t want a label to define my daughter; I want my daughter to define herself. She’s a beautiful soul who has some differences. But if we were all alike, wouldn’t that be boring?

Her diagnosis causes her to work a little harder than others, but she’s learning a valuable lesson of the payoff of hard work. She understands not everything will be handed to her in life. So my child has some things about her that make her different. So what! So maybe she won’t be the best at everything, but neither will anyone’s child. We all have strengths, weaknesses, our niches and our own unique personalities. We should be praising and celebrating the strengths, not separating our children by their differences.

So if my daughter’s diagnosis is particularly affecting her one day, I won’t try to apologize for her actions and blame it on her diagnosis. You might judge us silently in your head, but we have good days and bad days just like any parent has with their children.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

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What I Need You to Know on World Prematurity Day

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Once upon a time I used to bleed awareness. I used to throw statistics around. I’d scream at the top of my lungs and beg everyone to understand, beg them to see.  

In recent years, my battle cry is not as strong.  

I haven’t become weak. Worn maybe, but never weak.

I’ve come to realize that unless someone has stared a journey right in the eye, they can never truly appreciate it or its struggle(s). They can’t understand the grief, the pain, the joy. Today is World Prematurity Awareness Day. But instead of raising awareness for premature births, I just need you to know a few things:

I need you to know premature birth is a death sentence for far too many. An estimated 1 million babies die each year from complications of premature birth.  

I need you to know that’s roughly 2,740 babies will die each day.   

I need you to know premature birth is the #1 killer of babies. #1.  

I need you to know premature birth is a life sentence for so many of its survivors.   

I need you to know that premature babies are not just small babies who need to grow. A newborn on life support is not a baby who just needs to grow. He or she is fighting for his or her life.

I need you to know the strongest people I’ve ever met weighed a pound or less.  

I need you to know leaving the NICU is not symbolic of prematurity being over.

I need you to see the years of therapy, the missed or delayed milestones, the 17 specialists, the never-ending testing, pokes, scans, medications with unknown long-term risks and all the hospital trips and admissions.   

 I need you to know that you can’t expect a child born prematurely (or his/her family) to just get over the effects prematurity had on them. 

I need you to know parents of preemies had/have the same hopes and dreams for their children as “normal” babies/children.   

But I also need you to know prematurity forever changed the trajectory of our lives. And the lives of far too many.    

I need you to know that while you can’t understand the journey, you can understand the fierce love parents have for their child. No matter how small. No matter how sick. No matter how disabled.  

I need you to know I love this beautifully, messy, complicated life. I’ve found beauty in the ashes.  

And I need you to know there are ways to help. You can always share our story of hope and healing. Organizations exist ready and willing to step up and help families who are beginning this journey.  

Some of my favorites include:

Friends of Tennessee Babies with Special Needs (who carried on the Saving Grace Project when we left Tennessee)

NICU Helping Hands

Pierce’s Project

Zoe Rose Memorial 

Graham’s Foundation

If you would like help in locating an organization in your area, I would love to help you. Email me and I can connect you! 

While my mama heart longs for a day where other families wouldn’t have to endure death or the NICU, I ultimately know that may never be because we live in a broken world. But there is always hope.  

Fourteen ounces, y’all. There is always hope.  

World preemie day

Follow this journey on Parenting the A Team.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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