Why All the Hate in the Autism Community?

398
398
5

I really, really, really enjoy reading blogs and Facebook pages where autism is the common thread. The people who write or read these blogs/pages usually have someone in their lives affected by autism. I can commiserate with others struggling with similar behaviors and delays or celebrate with them as I read about their child meeting a milestone or goal. It can be immensely reassuring to read about someone else who has a child who shares some of the same issues, quirks or talents as my own. Personally, I believe it makes one feel less alone while stuck deep in the autism trenches. I also love the blogs that use sarcasm, snark and humor to help ease the seriousness of what we’re dealing with.

But I’ve come to realize that some of these same people I feel an instant camaraderie with can become vehemently vicious when someone makes a comment or writes a post that contradicts their opinion for treatments or on how to parent a child with autism. All of a sudden, everyone is an expert.

For instance, vaccination is a hot, explosive topic amongst the autism community. There are some for and some against vaccinating their child(ren) who have autism.  Some believe, without a shadow of doubt, their child has autism because they received a vaccination, while others think the aforementioned parents are crazy. You can hardly admit to liking or hating Jenny McCarthy or Dr. Andrew Wakefield without setting someone off. Other big trends that get people all riled up are whether or not autism can be cured, using the words “high-functioning/low-functioning,” autism schools, communication devices, ABA therapy, special diets (no gluten, no casein, no dyes, etc.), nutritional supplements and alternative therapies. While some parents are taking out second mortgages for some of these treatments, others are thinking those same parents are either nuts, going overboard or even abusing their child.

I get it; we all want what’s best for our kids. Of course, everyone’s perception of what’s best obviously can differ from parent to parent. Whether we want them to gain speech, feel better physically, lower their anxiety level, reduce the spinning and flapping, gain social and life skills or obtain the ability to cope in this chaotic world, I believe we truly just want them to be happy and to reach their fullest potential.

What I don’t get is all the hate, anger and condemnation. Why do some people attack other parents for their choices and beliefs regarding their own child affected by autism? Aren’t we all on the same team? Do we all have to agree and be on the same page? It’s so upsetting and quite sad to see parents bash one other just because so-and-so refuses to vaccinate or so and so does vaccinate. Scientists, doctors and other professionals are all trying to pinpoint autism’s cause and hopefully some day soon, we will have definitive answers, but for now, why can’t we all just focus on advocating for, helping and loving our own child? Sure, share what’s working well and what’s not working. Share whether your child is vaccinated or not, following a special diet, doing alternative treatments, going to ABA schools, homeschooled or maybe how you’re just doing traditional therapy and sending them to the public schools. Write about what seems to work for your child versus what doesn’t because it may help someone else make decisions — especially those new to the game. While our extra unique kiddos on the spectrum often view things in black and white, I don’t think it’s productive nor kind to think that way as parents or caregivers.  There are of course always extremists on both ends, but I have to believe we all share a common bond and should be building each other up instead of ripping someone a new one for their choices or way of thinking.

We want our kids on the spectrum to be accepted by society for who they are and to be treated with respect. How in the world can that ever happen if we ourselves are unable to give each other respect? We need to quit working against one another and be more supportive and understanding as a whole without getting caught up on individual choices. Do what you feel is right for your child and your child alone, and please try to keep the peace in our ever-growing autism community. I think we have enough hardships, stress and angst on our plate as it is, don’t you?

instafamily

This post originally appeared on Our Version of Normal.

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.

398
398
5

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Why I Don’t Mind Having One Less Band-Aid

36
36
0

Last Friday afternoon, shortly before my son, Dominic, was due to come home on the bus, I popped into my local Kroger to pick up a handful of items for the weekend. As I was putting the last of my things onto the conveyor belt, I overheard the gentleman who was bagging my groceries say to the clerk next to him, “Can you get me a Band-Aid?”

She answered back, “OK, I’ll get you one in a minute.”

He started to get upset that he didn’t have one. Since I was running late, I guess I could have just finished bagging my own groceries and gotten out of there, but that’s not my style. I always have at least one Band-Aid on hand at all times, so I pulled one out of my purse and said, “Do you want this one?”

He seemed relieved and said, “Yes, could you put it on my finger?”

love the fact that my local Kroger has hired a handful of individuals with special needs. As I finished putting the Band-Aid on his finger, he told the clerk, “We should buy her a candy bar!” I told him, “No, that’s OK.” The clerk was telling me that the bagger has to ride a bus to get to work by himself.

domandmom1 As I walked to the car and loaded in my groceries, I had a flash-forward moment to about eight years from now, when Dominic will be 18, an adult. It’s so hard to predict the future for him. There was a time when I didn’t think Dominic would ever be potty trained. But yesterday, I was ready to have a party because he said, “I have to go potty!” I’ve been having to prompt him to go every two hours, so him telling me he had to go was a huge step for him. I feel like every day we take a few more steps towards him being more independent. I think about his future more and more as he gets older.

Will he go to college? Get his driver’s license? Have a job? Live on his own? One thing I’ve learned as get older is you can’t assume anything in life. I’m sure my bagging buddy has a mom out there. I know I will never probably meet her, but I hope she knows what a sweet and awesome son she has and how proud she should be of him. Who knows, maybe one day she’ll be shopping at that Kroger and Dominic will be bagging her groceries and he’ll need a Band-Aid.

This post originally appeared on bountifulplate.

Want to end the stigma around disability? 

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

36
36
0
TOPICS
JOIN THE CONVERSATION

Dear United Airlines Employee Who Saw an Overwhelmed Mom and Actually Did Something

227
227
1

Dear United Airlines employee at Yeager Airport in West Virginia,

I was waiting at the airport desk with a preschooler, carrying a backpack, a baby in a stroller, two large suitcases, a handbag and a carry-on when I found out my flight to Washington Dulles in Virginia had been delayed. I saw you look at me with all my baggage and two girls and smile apologetically. I admire the way you kept calm as I freaked out because I was worried I’d miss my international flight from Dulles to Frankfurt.

When I told you my baby had an appointment for a muscle biopsy in Germany, you did everything you could to find me a flight from any nearby state to get me there in time. I haven’t forgotten that.

I watched you as you called different airlines and different airports with a genuine look of concern on your face, trying desperately to find me a flight. Although you couldn’t find me one, I want to say thank you for doing everything in your power.

Thank you for being genuinely concerned.

Thank you for checking me in a day in advance to make my life easier.

Thank you for giving your colleague that look when she told me I had two extra pounds in my suitcase.

Thank you for the Dulles meal vouchers.

After your job was done you told me, “I will ask my mother to pray for you, she has an open connection with The Lord.” Thank you for that.

Thank you for giving a sweaty, flushed and scared mom a much needed hug.

Thank you for making my day and reinforcing my faith in humanity, but most of all thank you for being you.

You have no idea how much you helped me.

image (8)

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.

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.

227
227
1
TOPICS
JOIN THE CONVERSATION

Dad Honors Son With Disabilities With Incredibly Sweet Rap Song

406
406
2

Eight-year-old Jared was born with several disabilities including cerebral palsy, epilepsy and hydrocephalus, a condition that leads to brain swelling, due to a stroke he suffered in utero. He cannot walk, see or speak. But to his dad, he’s a real superstar.

Jared’s dad, Jayce Correia, is so inspired by the courage Jared shows every day that he decided to write a rap about him, according to The Huffington Post. He posted a video of himself performing the rap for Jared on Facebook last week, and it’s already garnered more than half a million views.

Though he can’t see his dad in front of him, Jared visibly lights up when Correia starts singing. “He might not be able to see, or comprehend much, but boy can he hear and feel a rhythm!,” Correia told The Huffington Post.

Watch his touching performance in the video below.

h/t Huffington Post

To learn more about Jared’s journey, click here or visit his family’s Facebook page.

Want to celebrate the human spirit? Like us on Facebook.

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

406
406
2
TOPICS
JOIN THE CONVERSATION

How My Birth Defect Led Me to the Love of My Life

970
970
12

10529659_10202251599483565_684189268_n My name is Emily Rose Broeren. I am 23 years old, 5 foot 4 and have blonde hair and blue eyes. I was born and raised in Kaukauna, Wisconsin, but now live in Massillon, Ohio. My family means a great deal to me and are some of the most awesome people (but craziest Packer fans) I know. I am in love with a wonderful man, Cameron Kohlman, who I’ve loved since I was 4 years old. I enjoy singing at the top of my lungs, I’m scared of the dark, and I love being an advocate for all kinds of equality.  This defines me.

I was also born with a rare birth defect called bladder exstrophy.

This does not define me.

Bladder exstrophy has given me pain, anger, unwanted UTIs and embarrassment but has rewarded me with strength, memories, joy, irreplaceable friendships and most important… my fiancé.

I was born on January 11, 1991 at Kaukauna Community Hospital. The story never gets old. My parents weren’t sure if I was going to be Tony, the boy my dad had always wanted, or Emily, another Broeren girl. As any parent, they were impatiently waiting to see their baby. Everything about my birth went as planned until my mom asked, “Boy or girl?” The doctors couldn’t answer. They weren’t sure. All they saw was the bladder that protruded outside of my body. My condition was diagnosed shortly after, and I was transported to Children’s Hospital of Milwaukee for my first surgery.

My journey with surgery began just two days after birth. Doctors put my bladder back inside. For the next couple years, I led a pretty normal life with two older sisters, Jenny and Kelly, and got the blame for being the spoiled-rotten youngest sister, no matter what the heck was wrong with me.

In 1995, my fantastic parents, Todd and Sara, made the decision to consult with the late, world-renowned surgeon, Dr. Robert Jeffs, at Johns Hopkins Hospital in Baltimore to move forward with my bladder-neck reconstruction and osteotomy to achieve urinary continence. My surgery was a huge success and always has been. I’ve had a few other scar revisions, collagen shots and cystoscopies since then, but this was mostly by choice. With the help of Dr. Jeffs and Dr. Steven Docimo, I’m able to void without the help of a stoma or catheter, and I can hold my own pee. In the BE world, this is pretty earth-shattering.

My attitude about bladder exstrophy isn’t sour. I feel incredibly blessed. Without this birth “defect,” I wouldn’t have met the man I will marry in 2015, Cameron. He has BE, too! We met at Hopkins in 1995. After we both got our osteotomies done, Dr. Jeffs introduced our moms, and they hit it off. Soon enough, we did too. We spent most of our time in Baltimore at the Ronald McDonald House post-operations, confined to our wagons to keep our hips from moving. He was my playroom companion, the one I always got into trouble with, and my first kiss (without our parents knowing, of course!). We made so many memories I’d never forget.

10528053_10202251599763572_1257405125_n

Then, the time came for us to go back home. Cameron to Ohio, and Emily back to Wisconsin. We didn’t reunite until 2006. We fell in love again shortly after. Eight years later, here we are. We have a wedding to plan, a family in our dreams and a future with endless memories to be made. When I was little, I had always asked God to make my dreams come true. Little had I known, bladder exstrophy was it. It led me to the greatest gift I couldn’t have dreamt up myself — Cam.

10529650_10202251599923576_1341960616_n

Sure, I love my BE now, but it wasn’t always like that. Imagine being the chubby kid with glasses in elementary school. As if that isn’t bad enough, imagine being the chubby kid with glasses in elementary school who peed their pants. Yeah, it really sucked. I got made fun of endless times, of course, but had a good friend, Kayla, who stood by me (and still does) every day. Kayla didn’t care that I didn’t have a belly button or that I went pee 12,000 times a day. Kayla knew I was a good person (and so was she) and stuck with me. It took me a while, almost 20 years, to see what Kayla saw in me.

I have my flaws. Sometimes, I hate my body. Some days, I want to just be able to go two hours without having to pee. But most of those times, I know it could be worse. I am living, breathing, happy, healthy, surrounded by a supportive family, and in love. The hospital food will always suck, the long nights won’t get any shorter and the endless IV pokes and UTIs will never hurt any less, but if at the end of that day, I’ve pushed through and won, it can only make me stronger, and it’s worth it.

10514777_10202251599723571_1809194276_n

If I have one piece of advice to share with parents of BE kids, it’s this:

Bladder exstrophy is not your child. Your child is beautiful, strong, remarkable, smart, silly, heart-warming, unique. The list is endless. Don’t stamp the diagnosis permanently on their forehead. If you treat them different, chances are the kids at school will too. The best thing my parents ever taught me is to treat every single person in this world how you would like to be treated.  I certainly didn’t want to be treated like the chubby kid with glasses who peed her pants. I wanted to be treated like the girl who was nice to everyone, sang loudly and always tried to make people laugh. Educate your children to be accepting of all people. Most important, teach them to love themselves and to celebrate their differences. They are what make them beautiful.

Want to celebrate the human spirit? Like us on Facebook.

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

970
970
12
JOIN THE CONVERSATION

When People Started Asking Questions About My Kid’s Behavior

206
206
1

The joke was on me. After two and a half weeks at home — two of them plagued with cabin fever and epic tantrums — The Kid was all dressed up and ready to go back to school on Monday. I kissed him and The Husband goodbye and watched them back out of the driveway. Then I headed back inside to where Little Brother waited for his morning meal – which I’d be giving him as we both sat on the couch, season five of “Downton Abbey” unspooling in front of us.

hand But it wasn’t to be. Within minutes, I received what I vainly hoped was a prank text from The Husband informing me that school resumed tomorrow, not today. The Kid arrived home shortly after, his winter coat making a mockery of both our plans. I resigned to my fate: no upstairs/downstairs drama for me. As The Kid pitched another mind-blowing fit on the floor, I bitterly switched the DVR to “Mickey Mouse Clubhouse.” MeeSKA mooSKA bitches.

All was not lost, though. We just joined the gym at the local church where The Kid attends preschool, and they have childcare. So at midmorning on a day that could have been a wreck, I decided to cut my losses and hand my kids off to strangers so I could run – if not from my problems, then around a track. I returned to the nursery an hour later to reclaim my baggage, and The Kid’s teacher informed me that the director wanted to speak to me. Fear struck my heart – I felt like I was being called to the principal’s office, which for someone who in school was never actually called to the principal’s office, is a terrifying prospect that doesn’t diminish over time. The older lady said hello, then mentioned The Kid’s speech delay. And that’s when I realized it.

People are starting to ask questions.

Back when I worked for a living, I was one of the question-askers. So I know what it means when someone says, “Is there anything else we need to know?” or “I’m just trying to figure out ways I can help him.” These questions, with their dual nature of good intention and curiosity, seem innocent enough to the asker but fall like a bullet on the heart of a mother, because this is what I hear:

What’s wrong with your kid?

I can barely handle a question with implications like this — my defenses raised and my ire piqued and the fact that I want to scream it from the rooftops that he has been through hell and back and is sitting here smiling and that is what’s right, what’s beautiful. But not everyone in the world has been walking this road with us or reads my blog (unacceptable) and so I give her The Kid’s bio — The Cliffs Notes — and at the end I know she’s still batting words like autism and spectrum around her head because of how he’s not talking yet and he likes to sit in one particular spot on the carpet and gravitates toward the same toys, and I know I will be answering questions for a while. Including my own.

Heading to the car with The Kid and Little Brother, I felt a tidal wave of emotion approaching – the fears that stretch out in perpetuity or at least until he starts talking, the sense that The Kid will be written off by people, placed in a box or assigned a label. The unfairness of it made me angry and sad. And it was convicting, because I used to carry labels everywhere myself and dispense them freely. I climbed into my seat and told my boys I love them, and then I prayed.

The one word that kept poking through as I poured out my messy heart? Advocate. “You are his strongest advocate,” I heard, and it was like a joke because of all the things I was feeling, strong was definitely not one of them. This scenario requires more patience and more strength and more faith than I ever signed up for or claimed to have on my customs declaration when I arrived from Non-Parenthood. What a joke this would all be, what an impossible situation, if what I brought with me were all I have.

Grace is a necessity as much as a gift. It’s everything. It’s what tells me, whispers in my ear and my heart, that maybe I’ve come to the kingdom for such a time as this. That – imagine the thought – this is not a joke or an accident. That everything in my life has led me to the moment I’m in and prepared me for it. That grace will, thank you very much, take it from here, and there, and everywhere, because I’m not required to produce a resumé but just to be who I am. And grace will work with that and fill in the gaps and take my hand and turn this from a dirge into a dance.

I asked my own question at his last checkup, finally mentioned a word I was afraid to speak, and his pediatrician gave me the answer that was not an answer, not a certainty – and yet it echoed and affirmed what my heart had been telling me. That The Kid doesn’t fit into a box; a strict label simply can’t be applied right now because so much has happened to him and so much is yet to be determined. He’s what he is – and right now, as a 3-year-old who doesn’t speak yet knows all his letters and numbers, arranges his blocks instead of stacking them, tries to figure out how his toys work instead of simply playing with him – he’s what the world would call different.

And I can work with that. I, a girl who was no stranger to different herself, whose quirks drove her to a keyboard and to a city and to grace and made them all fit. And though I never checked the box marked “different” for me when I was signing up for this life and parenthood gig, here we are anyway: pitching our tent in an area not on the itinerary, where the GPS doesn’t work, where answers are in short supply. It’s all very inconvenient, for the world and for the girl with the labels, to operate without a handbook. But I also know that different is what keeps me returning to the well of grace more than I ever would have otherwise. And grace is what renames what we thought we knew: Them becomes Us, in spite of becomes because of, different becomes beautiful, and we go from the being in the unknown to being the known.

A relative who doesn’t frequently reveal his emotional hand confided that he loves The Kid even more, after all he’s been through. And as my boy grabs my hand and presses it to his face without a word, I hear what isn’t spoken. I look down at him with the eyes grace gives and know I have never felt more fully or seen anything more beautiful, and I tell him, “I love you too.”

This post originally appeared on Plans in Pencil.

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.

206
206
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.