To the Woman Who Wants to Pray Autism Away

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I am autistic.

I am also rearing children who are autistic — along with non-autistic children who have various disabilities. Our home is swimming in acronyms that stand for all of the different diagnoses in our home. We are quite the “motley crew,” my loud, flapping, spinning, scripting, disabled family and I. And though it’s not always easy (which would be the case with or without disabilities), it’s authentic. We love each other. We strive to respect one another’s strengths, challenges, boundaries, and needs. We mess up at times. But we make it work.

In addition to being a family with various disabilities, we are also a large family, an adoptive family, a Christian family and a family of color. We stand out when we go places first because of our size and/or demographics, and secondly because sometimes the way some of us present is a little different than the norm. At times we’ve had negative experiences because of this (like being told to leave movies or plays). But generally the people in our lives are welcoming and supportive.

Our church is also a good place of support. Though not perfect, it strives to include people of different backgrounds and experiences and to embrace diversity, including disability. We enjoy attending there and are actively involved in our church. But something happened the other day that I need to address.

Recently there was a special performance at our church one evening, and we attended. The children typically attend classes designed for youth, but this was a family-friendly event, so I had the children with me. I was a little worried about one of my children (my youngest son) because the sanctuary uses lighting effects (dimming, etc.), and there is a lot of noise (praise team, live band, bass pumping out of the speakers) and a lot of people. So I was prepared to leave if we needed to. Fortunately, this was a “sensory-seeking” day rather than a “sensory-avoiding” day for him, so not only was he able tolerate the environment that night, it seemed to energize him.

The music and the movement enraptured him, and he wriggled out of my lap and climbed to his feet. He moved to a space in the aisle near me, but more in front closer to the stage as if to “feel” the music better. He grinned widely and swayed to the beat. He bounced. He clapped. He spun. My heart burst with joy watching my baby boy become one with the music. I could relate, as there are some things that capture me just as deeply. You see, autistics don’t do anything halfway. We are either all in or we are not in. I can get similarly lost in a book or in my writing or in other things I’m passionate about. When we’re engaged in something, it can be like an all-consuming fire. There is nothing else around us, and nothing else matters at that moment. Watching my child, I knew he was being propelled to move and to express his joy by something from deep inside of himself.

I didn’t worry about people staring or pointing or whispering because our church is not like that. If anything, I think I saw a few people smiling broadly at him as they noticed his joy and how he was worshipping freely and boldly.

When we left I stopped by the restroom before heading to my car. An elderly lady was in there washing her hands at the sink. I walked past her en route to one of the restroom stalls. She caught my eye and smiled at me, and I returned her smile. The woman, who appeared to be about 80 years old or so, was short and had kind, greenish-gray eyes and a sunburst of freckles across her nose. She then spoke. “Young lady, was that you with that little boy who was jumping around out there?” she asked.

“Yes, ma’am,” I answered with a smile. “That’s my son.”

“He sure is precious,” she said with an even bigger smile. Then she lowered her tone, moved a little closer to me and inquired, “Is he touched?”

“Touched?” I had no idea what she meant. “I don’t understand.”

“I was wondering if your son was touched. You know. Special. He seems different. Is he special?” she clarified.

“Special.” I didn’t understand “touched,” but I understood “different.” And I definitely understood what she meant by “special.” My smile fell.

“Yes, ma’am,” I replied softly. “My son is very special to me. He is a wonderful child. He is autistic.”

“Artistic?” Her brow furrowed.

“No ma’am. Not artistic. Autistic.” I struggled with how to make her understand, and decided to add, “Some people would say autistic and some would say, ‘He has autism.’ He thinks and acts differently.”

“Oh!” she nodded in understanding. “One of my great nephews has autism too. Can’t talk, but smart as a whip. Well, I’ll pray for you, young lady. And your son, too. I’ll be praying.”

“Thank you, ma’am,” I replied. “We could always use more prayers.”

“I will be sure to pray. Our God is a great Healer. He can heal your son. I’ll pray God continues to give you strength to deal with autism. I know it must be hard. God bless you,” she said.

I was at a loss for words. I didn’t want to be rude, but this was going completely wrong. “Ma’am,” I choked out, “I don’t need prayers to deal with autism. I understand autism because I am autistic, too. I don’t need you to pray for my son to be healed.”

“Of course not!” she exclaimed. “I am so sorry… You’re right.”

Relieved that she understood the offense, I smiled again. “Thank you, ma’am,” I said, and finally entered the stall.

As I was pulling the toilet seat covers out from their place on the wall of my stall, I heard the woman speak once more:

“Please accept my apology. I will not pray for God to heal your son. I didn’t realize you have the same stronghold. I will instead pray for God to heal both of you. By His stripes you are both healed.” I then heard the bathroom door swish open as she left the restroom.

I know the lady meant well. She was trying to be caring. But her words demonstrate a widespread belief and way of thinking that I don’t agree with and think is extremely harmful. It’s something that needs to stop.

Please don’t try to pray the autism away. I don’t need to be “healed” of autism. And my children do not need to be either. We are not autistic because of some sin, or some defect or some punishment from God. We are autistic because we just are. This is not an affliction. It’s a way of being.

I believe in prayer. I believe in healing. Feel free to pray for us. Just not like that. I believe God made us this way. We are not broken.

We need all types of different people in this world. We need all types of minds as well. The world would be boring if we were all neurotypical, or if we were all autistic, or if we were all gifted or any number of things. Just like the world would be boring if we were all white, or all black, or all male or all female, etc. There is beauty in our diversity. There is strength in it. And I believe when God looks upon it, He thinks it is good.

Please don’t pray for my or anyone else’s autism to go away. It is a part of who I am, how I believe God made me. I am fearfully and wonderfully made, autism and all. By all means pray for me, but pray for my health, my family, my finances, my spiritual growth, whatever; don’t pray that God takes away what makes me “me.”

Follow this journey on Just Being Me…Who Needs “Normalcy” Anyway?

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Why I’m Considered a ‘Soccer Mom’ When My Kid Doesn’t Play Soccer

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I used to be jealous of those “soccer moms” running their children back and forth to games and practices. I used to get mad as hell when I’d hear them complain about a soccer tournament taking up their entire weekend. I used to smile but then cry behind closed doors when I watched their children play. I used to turn green with envy that they had children so able and willing to play, and then shed secret guilt-filled tears because I wished my child was like theirs.

But not anymore.

It’s taken me three years since my son’s autism diagnosis to realize that I am a “soccer mom” too, my child just doesn’t play soccer.

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You see, I do drive my child to and from practices several times a week, but we call our practices “therapy.” My child also has days where he gives it his all at practice, and he also has days where his head just doesn’t seem to be in the game. And just like your child, when my child’s name is called, he stands up and we both know it’s game time.

My son’s field may look different than the grassy knoll your child plays on, but it’s really not that different at all. My child’s “goals” may not be between posts dug into the ground, but I promise you he has them (he has many of them), and I promise you he tries his hardest to score. His boundaries may not be drawn onto the ground with white paint, but he knows they’re there and he knows when he’s reached them. And yes, he even has a sideline too, when he has caused a “penalty” or just needs a little time out to rest and recuperate.

I do get to cheer for my child, and you know what? He also has “fans” cheering for him too. Therapists, friends, other parents and even the receptionist give him an enthusiastic high five when he excels at something he’s worked so hard in achieving. When he scores a “goal” everybody stands, everybody claps and everybody can feel the excitement fill the air. Every “goal” is like winning the World Cup. If even just for a minute, I know my child feels like the star player.

No, I don’t get to sit on a set of bleachers or in fold-up chairs along a sideline, but I always get a front row seat. Just like you, I’m the first one there and the last one to leave.

My son also has a “coach,” and even though the correct medical term may be “therapist,” they have similar jobs. Just like you, I don’t always agree with his methods. I get upset when I think he’s pushing my child too hard. I get mad at him when I see my child getting upset and he refuses to let him quit. I may even raise my voice at him, walk towards him and point my finger in anger. But just like you, I know he’s only trying to help.

And just like you soccer mom, I also know the agony of defeat.

I know what it’s like to watch your child practice for hours on end, only to see little or no improvement in his skills. I feel the same way you do when you see your child drive the ball down the field towards the goal with nothing standing in his way and a wide open net for him to shoot at. I too hold my breath in anticipation, muscles frozen, and feel like the entire world is moving in slow motion as I watch my child get so close to scoring, only to have his shot miss or get deflected by an outside force.

I also know (all too well) what it feels like to hold my child as he cries, tell him “don’t give up, you’re doing an awesome job” and wipe away tears when frustration and anger consume us both.

I’m proud of my child every day just for trying. I’m proud of my child for pushing himself past his limits, but most of all, just like you, I’m proud to be called his mom.

So you see, soccer mom, we really aren’t that different at all.

Our children may play on different fields and they may strive for a different set of goals, but that doesn’t make them any less of a child. And it doesn’t make me any less of a parent. 

It took me three years to realize that the world is filled with “soccer moms” all driving their children back and forth, cheering them on, wiping their tears and feeling the triumph of a win and the agony of a defeat.

Yes, I’m a soccer mom too. I just don’t have the bumper sticker or the sweatshirt that says so.

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14 Little Discoveries I’ve Made on a Mental Health Ward

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OK, so almost anyone would agree that spending your teenage years in hospital is not exactly where the fun’s at…

Let’s face it, you know life’s not at its finest when you get excited about a trip to the shopping center to buy… wait for it… cereal bars! (Seriously though, don’t judge because if I see another digestive I may actually turn into one.)

Surely living life to the fullest in a “house” (I use that term loosely for literary purposes…) full of teenagers, with free food six times a day and a free pass to give school a miss for a few months is ideal? 

Eek, not so much. Maybe that’s because I’m currently living it up in Casa del… Crap. Yep, that’s right, a mental health ward! 

But hey, it’s definitely taught me a thing or two.

1. Peeing alone is a luxury.

Yep, you read that correctly. A luxury. You see, in the exciting life of Lauren, privacy goes out the window. Someone watches me pee, shower, eat … It’s literally taking the piss! 

2. I will never listen to the “TOP 40” again.

Have you ever argued over the remote with a sibling? Back in the days when my brother wasn’t the 15-year-old gentle giant he is now, I usually managed to negotiate, OK, manipulate him into “agreeing on something” when it came to the TV.

This is not so easy in a ward with 15 other people. (Somehow most teenagers don’t seem to share my interest in BBC One’s “Holby City.” In fact, I’m generally met with the response, “Oh yeah, my granny watches that!” My conclusion is only pensioners seem to have top notch taste in television.) 

So despite my protests, the music channel seems to cause the least mutual angst and is therefore a constant. 

*Just to let 12-year-old girls everywhere know: Justin Bieber is not even vaguely attractive. I’ve watched his music video on MTV 18 billion times… I’m confident when I say, give up your obsession and make a swift but educated transfer into the world of Channing Tatum*

3. Digestives are the devil’s biscuits.

Ugh. Digestives.

When stuck in the lovely world of weight restoration during anorexia recovery the word “meal plan” becomes a venom and the dietician is the devil’s advocate. 

Seven digestives a day. Let that sink in… seven. I’m fairly certain I’m currently 90 percent digestives.

5. It’s not like the movies.

Sorry to disappoint but this “Psych Ward” features no straight jackets, barred windows or lunatics — just a heck of a lot of adult coloring in booklets! 

6. Mocha-flavored Nutri Drinks are kinda fab!

In the exciting world of anorexia recovery, we drink these horrendous high-cal nutrition drinks known as “Fortisips.”

My flavor breakdown: Strawberry = VOM, Chocolate = WRETCH. Vanilla = RANK. Mocha? Surprisingly pleasant! 

7. I really hate semolina.

*Shudders*

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8. Netflix is a babe. 

Huge shoutout to my hospital for free wifi.

9. My family deserves a medal.

Oh, how I could whine and moan all day about the fact that my dad insists on singing “I’m just a sweet transvestite from Transylvania” (“Rocky Horror” song) loudly and extremely frequently, despite the fact that he is neither of the above. Or I could whinge about the fact that my brother Sam insists on using “Shut up, Lauren” as his catchphrase these days…

But seriously, big shoutout to Madre and Padre for putting their everything into getting me better. Oh, and Sam I guess you’re all right…

10. National Health Services mattresses are a crime.

Blue, sticky and well just general ew.

11. Card games are a life saver.

Got boring 1:1 obs? Cards. On meal support? Cards. Nothing on TV (no, the music channel doesn’t count)? Yep, you guessed it: Cards! 

12. Leggings are 100 percent acceptable as pants.

Believe me, when my food baby is in full swing leggings are my best friend.

13. Coke Zero is major rebellion — how thrilling! 

Contraband, hollaaa.

14. I’m capable of resembling a gorilla.

Speaking of banned items, a razor is a big no-no for all, resulting in furry legs — hawt! 

OK, so I may not be getting a PhD, but I’ve definitely made some major discoveries. Right, I’m off to watch the music channel, until next time… au revoir! 

Follow this journey on Rambles of the Recovering.

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‘The Rock’ Had a Moving Moment With Oprah About His Depression

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What words come to mind when you think about Dwayne “The Rock” Johnson? Tough? Rugged? Strong? Manly?

The 43-year-old actor is all these things and more; and he’s proving that experiencing depression doesn’t make you less tough, rugged, strong or manly.

On Oprah’s “Master Class,” a series where celebrities and public figures discuss their triumphs and challenges, Johnson opened up about struggling with depression.

“I found that with depression one of the most important things you could realize is that you’re not alone. You’re not the first to go through it,” he says in the clip below. “I wish I had someone at that time who could just pull me aside and [say], ‘Hey, it’s going to be OK.’”

Watch a moving clip from the episode:

Johnson’s episode of “Master Class” premieres Sunday, Nov. 15 at 8 p.m. central time.

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7 Things I Want All Parents to Know at the Beginning of a Diagnosis Journey

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mc9_3756052609_o-201x300 I’m often asked, “If there is one thing you could tell others in the beginning of this journey, what would it would be?” Depending on my day, this answer varies. There are few things I would like to share with that mom or dad whose child was just diagnosed (with anything really; it doesn’t need to be diagnosis-specific).

  1. You are not alone. Whether you’re sitting in the NICU, another part of the hospital, in an outpatient clinic or in your own home when you get the news your child has a medical condition, you’re not alone. There are more people than I ever imagined in our communities going through the same things you’re feeling. The sense of failure that you may have done something to cause this, the anger at the world for making your innocent child have to go through this, the jealousy you feel when you see friends, family and even strangers with their healthy child, the grief and loss that overpowers you when you least expect it. These are feelings all parents of children with special needs experience. It doesn’t matter if you child has a mild or a severe condition; the emotions we go through as parents are very much the same. Until you realize this, it’s easy to feel completely isolated and like no one could possibly understand what you’re feeling.
  2. This is not a competition. There’s an odd phenomenon I see from time to time. Parents of children with special needs will start to talk about some of their struggles and it starts out supportive of one another. Then, somehow it shifts. One person’s child may be more medically involved than the other, and they start to say things like, “Well at least your kid can walk/talk/smile,” and in a sense they start to belittle the other parent’s struggles. All of our struggles are real! It’s all subjective too. What may seem like a lot to one parent may seem like a little to another. That does not make either person’s struggle any less real.
  3. Do your research. When you talk to your doctor and get a new diagnosis, a new treatment and new medication, ask the doctor to write it down or spell it. Go home and Google it and learn everything about it. However, do not self diagnosis. Do not just Google your symptoms. Googling aimlessly will only get you into trouble.
  4. Ask for help. I waited two years to ask for nursing for my daughter who required around-the-clock care, and four years to get help over night. Once I got help and realized how sleep deprived and stressed I was, I kicked myself for not getting help sooner. Getting help does not make you a bad parent. If you don’t qualify for nurses, train a friend or family member to care for your child so you can take a break every now and then. Your health will be much better and you’ll be a better parent for it. Even if it’s only a few minutes here and there, get help and take time for yourself.
  5. Use your resources. Social media seems to have everything now. There’s a group for just about every diagnosis, non-diagnosis specific groups, mom groups, dad groups, etc. However, not every resource will be a good fit. I’ve joined some diagnosis-specific groups in the past that were toxic for me. I had to walk away and find another group. If you’re not getting what you need from a group, don’t feel bad for leaving it. There are so many out there; I’m sure you can find one that fits your needs.
  6. Celebrate everything! I hate milestones. My daughter is 9 and we still have not hit any of the infant milestones. The first few years every doctor’s appointment is a brutal reminder that your child is different. It can be so defeating. Throw the milestones out the window and set realistic goals for your child. Learn to celebrate everything. Maybe you won’t get a first word or first step, but you get to celebrate things others take for granted. You can celebrate your child tracking outside of their previous vision field. You can celebrate having less secretions in your canister at the end of the day than you did the day before. You can celebrate three days without a seizure. These are just as important, if not more so, than “typical” milestones.
  7. Make it count. My last piece of advice is simple, live each day to the fullest. Every moment you get to make memories, do it. Never pass up on snuggles, story times or Eskimo kisses. Our kids are amazing, and I treasure every moment I get to spend with mine.

In closing, you can do this. It’s hard, but you do adjust and it becomes your “new normal.” Down the road you will look back and smile at how overwhelmed you are right now. You will meet so many amazing people in this journey. Slow down and let yourself enjoy the good stuff.

Follow this journey on CaseyBarnes.org.

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To My Friends With Medically Fragile Children Who May Be Afraid to Talk to Me

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Hey, Momma! Hey, Daddy!

Yes, you, the one who has that beautiful child labeled “medically fragile.” Yes, I’m talking to you today.

I know you.

I see you.

I know what it’s like to rejoice over crazy milestones that many parents may never experience. I know what it’s like to coax my tiny one to take in just 2 ounces so we won’t have to do a NG-tube feeding. I remember when G-tube day finally came because despite my best efforts, his little heart just couldn’t endure the work needed to suck it all down. I remember what it was like to switch from continuous feeds to bolus feeds — the grueling process of slowly transitioning, all the while trying to find a formula he could tolerate.

I remember what it was like to hold my baby in the PICU after surgery or during an illness with a tangle of tubes trying to trap me like Charlotte’s web. I remember going home from the hospital in scrubs after a drain tube in my son Mattie’s tummy had leaked all over me — and yes, I know the word “ascites.”

I celebrated things like tummy time, head lifting, first smiles, learning to sign “Momma,” pushing up to sitting, learning to put toys in his mouth, standing at the couch with support and all the other skills that didn’t just come naturally on a baby book timeline. They were mastered with a great deal of therapy. I celebrated as if my baby boy were a prize fighter who was just given the championship belt.

I know what it’s like to rejoice.

And I know what it’s like to be afraid. I know what it’s like to wrestle between believing for one more miracle, standing strong when I felt so very weak and the next moment wavering, sobbing, with fear rising up like an ominous rain cloud above my head.

I’m sorry that fear is part of this journey. I know what it’s like to find yourself caught up in a movie in your head, playing out worst-case scenarios, planning a freaking funeral in your brain. And then you shake it off because it hurts so badly. You stand up and brush off those horrible thoughts, turn on the TV to escape, stick your nose back in a good novel and grab another glass of wine.

And then my son died. Yes, your friend lost her sweet boy. The boy you may have only known from the million and one expressions plastered all over Facebook. He was gone. “Miracle Mattie” didn’t get another miracle. It didn’t matter that we had never met, never had coffee together, never even chatted on the phone. It didn’t matter, we were part of a special sorority, a “parenthood” like none other. We helped each other, we messaged back and forth about feeding problems, respiratory care, stuff other parents wouldn’t get.

Your heart dropped. You couldn’t breathe. This could not be happening.

It was way too close to home.

Because if it happened to Mattie, it could happen to… and then you cringed and tried to push the unthinkable out of your head.

And guess what, I understand that, too.

I have been where you are sitting so many times I have lost count. I have watched both strangers and friends say goodbye to their children way too soon, all while I was still holding mine. The first time it happened, I was literally rocking Mattie just feet away as a family stood and witnessed the greatest tragedy of their life.

Your lives intersected with mine, and right about now we all have lots of feelings. I’m going to share mine, and make a place for you to share yours as well.

Inevitably my grief is sometimes triggered by the joys and triumphs of your lives, by the “one more miracle” you are walking in, by the milestones your sweet one is achieving. It’s grief, though, not envy or bitterness.

Here are some things you should know about me:

I am still your friend.

I still care deeply about your child.

I still get anxious for you when things go a little sideways.

I still rejoice with you over all the beauty in your life, and I would never want you to hold back. As a matter of fact, I want you to celebrate and treasure every moment all the more! And take a bazillion pictures.

I am not the same.

Yet I am the same.

Grief has changed me, given me a different perspective on life. I have less tolerance for some things and more tolerance for other things. My heart, though broken, is bigger. There are no rose-colored glasses on my face, but I can still see.

I don’t want you to be afraid of me. When you reach out to me for my opinion or advice, I like it. It makes me feel like the road I traveled with Mattie has yet one more gift to give the world, the gift of understanding and wisdom, from one parent to another.

It’s always good when you do write to me, to acknowledge my grief. You don’t have to walk on eggshells, but you can always say, “Hey is today an OK day for me to ask your advice on something?”

It’s also nice if you check in on me once in a while, just because of me, not because you need something (and that wasn’t meant to sound snarky). It’s nice to be cared for. And I ask you always to give me grace in case I have to say, “I’ll chat with you tomorrow, today is hard.” Oh and one more thing, remind me if I forget. It doesn’t mean I don’t care, it just means my brain is still a little foggy some days.

So you see, I am the same. I want to love and support you and your child. Sharing my experience and my memories helps me feel more alive.

But I am not the same, because I’m walking with a limp. I am not the same because my love goes just a bit deeper than before.

Follow this journey on From the Heart.

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