two brothers holding hands with autism shirts on

When a Boy Ignored a Mom’s Warning to ‘Back Away’ During My Brother’s Meltdown

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To the mother screaming when my brother was having meltdown,

Back away! Get back!” you scream as my 11-year-old brother is having a meltdown at the zoo.

My brother has nonverbal autism that comes along with sensory processing disorder and many meltdowns. We decided to go to the zoo with my sister, brother, ABA therapist and respite worker. I have no fear taking my brother out to public places and really don’t mind what people might think, but something about this situation made me tick. As we were trying to calm my brother, all I could think about was you screaming at your child and other people to back away despite my brother being in a transport chair.

I understand you wanted people to give us space and keep everyone safe, but bringing attention to the situation like that was only making the meltdown worse. I understand you wanted to help, but when you scream at your child, who I assume by his curiosity had most likely never seen a meltdown before, to back up, he may view my brother as a dangerous person. My brother is not by any means a dangerous person, and I was amazed as another child came close to us.

As you were screaming for him to back up, he asked me if my brother was OK. I told him yes, my brother was having a rough time, but he was going to be laughing soon. His next statement was surprising and left me in shock. “I have rough times, too — especially with math.” The parents smiled at me, called the child back, and off went the child. Yes, my brother can have some intense meltdowns, but what you did not see before was a boy smiling with chocolate ice cream all over his mouth, a boy laughing at a bird pooping on his brother’s shoulder, a boy who was excited to go to the zoo.

Two brothers walking hand in hand at the zoo both wearing t-shirts that read Raising Autism Awareness One Step At A Time
Zachary and his brother in autism awareness T-shirts.

My brother’s meltdowns are a small part of his life, a small part of his day you unfortunately had to experience. Every meltdown can be a learning experience for my brother, for my family and me, and everyone who witnesses it such as you and your son. One child gained insight about my brother, and your son could have, too, if you gave him the chance.

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How I Told My Child She’s Autistic

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It’s something all parents with recently-diagnosed children on the spectrum likely ask themselves: How do we tell our kid she is autistic? And should we?

It’s my belief you should. And it doesn’t have to be hard or complicated. Keeping it simple is key.

Three years ago, after my now almost-9-year-old was diagnosed with autism, I wondered how I was going to explain attending appointments for therapy to her, and when she asked why we were going to the pediatrician’s office so often I figured now would probably be as good a time as any.

So I simply told her that we were trying to find some help for her. Because her brain doesn’t work the same way as other people’s — but that’s OK. Not everyone is the same anyway; we all have things we struggle with and things we are good at easily. Autism can be the same. Being autistic can mean that some things that affect others may not affect her; or some things affect her that won’t affect others — and that was why she was struggling. I explained to her about her senses and how we use them all every day, and I got her to think about her own senses and how they affected her. We got to talking then about how she doesn’t like noise, how clothes tickle, how lights are too bright and crowds are tricky.

And she took it really well. In truth, I think my amazing child knew she worked differently from others long before I told her, and it’s not surprising really when I think about it — kids really are innately intelligent and perceptive. In fact, I actually think explaining to her about autism and giving her behavior and sensitivities a label seemed to give her relief and understanding about herself. I believe it helped with her sense of identity and sense of self, and it certainly helped with her frustration levels at not being able to do some things or handle others.

She even exclaimed to me afterwards, “Oh, so that’s why I hate the sand at the beach! That makes so much more sense now, I thought something was wrong with me!”

No, darling, I told her. Nothing is wrong with you. You just take in your surroundings in your own way, and we are learning to support and encourage you so that you are able to make more sense of the world you live in. The world may be overwhelming, but it’s OK because people who feel and see things in another way color our world, just like you color mine.

So I would urge you to tell your children about their autism. Keep it simple and factual. Normalize it as a part of who they are, not a character flaw or a limitation; rather, share their diagnostic label with them to give them wings so they can fly with it. Because I believe shame and secrets can perpetuate the myth that “different” is “wrong,” and we really should be embracing all of our children’s unique neurodiversity — and teaching our children to do the same with themselves.

young girl walking along the edge of a lake
Jessica’s daughter.

The Mighty is asking the following: How would you describe your (or a loved one’s) disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. 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 Submit a Story page for more about our submission guidelines.

 

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To the Disney Store Employees Who Really 'See' My Son With Autism

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Every few months my son Griffin, who is on the autism spectrum, has an appointment downtown. From the very beginning we would make a day of it, going to the local playground and stopping by the Disney Store nearby. On our first visit to the store we met Lena, a cast member with whom we instantly connected. She took her time talking to Griffin and really seemed to get him. Lena made an impression on both of us, and we think she’s the best! I always text Lena to let her know when Griffin’s next appointment is, so we can make a point to see each other if possible. We’ve been friends now for about a year, and seeing her always makes our day.

Recently, Griffin had another appointment downtown. He was having a hard time on our way to the appointment, and I wasn’t sure if things would get better. But we stuck to our plans and made our usual visit to the Disney Store. As soon as we walked into the store we were greeted by Lena and her beautiful smile.

As I was talking to Lena, Griffin asked if he could go look at the “Frozen” toys. There is a book that he likes to read every time we are there.  I caught him out of the corner of my eye asking one of the cast members for help when he couldn’t find the book. The fact that he was being independent and asking for help alone was pretty cool, but then when I got to him I was really blown away.

Griffin and Jess reading
Griffin and Jess reading.

Jess, the woman who was helping Griffin, was on the floor reading to him. She had helped him find the book he was looking for, and then offered to read to him while he read silently from the same book. Jess was so sweet and spent a good amount of time with him. With her permission, I captured the moment and wanted to share it. I told her that in my opinion, we need to see and share more moments like these.

Moments where a person really sees Griffin — not his age or how he “should be acting, but they really see him and meet him where he’s at — show us what is possible for him and for us as a family. It shows us that acceptance, non-judgment and kindness are possible. Griffin is a beautiful boy who is trying to navigate the world, and I’m so grateful that moments like these show him (and us) that he will be just fine.

My family has been very fortunate to have moments like this to cherish and share. Thank you Lena, Jess and the Disney Store for making our day better and brighter!

A version of this post originally appeared on What Will This Day Bring?

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. 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 Submit a Story page for more about our submission guidelines.

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To the Children on the Autism Spectrum I Work With Every Day

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As a speech language pathologist, I have the privilege to work with young children on the autism spectrum every day. Recently, I was asked by a colleague to write something reflecting my experience with these amazing little ones, and as April is Autism Awareness Month, I felt moved to share it beyond the walls of our school.

I see you.

I see that you came to school today.

I see your favorite striped shirt and your not-so-favorite lace-up sneakers.

I see that you showed a friend your brand new backpack.

I see you found your favorite swing on the far side on the playground.​

I see you’re feeling like you’d rather stay outside.

I see you playing happily with the fastest engine from your train set.

I see you’d prefer I not play with you right now.

I see that you’re excited to listen to your favorite song.

I see that today, you don’t feel like talking in a “big” voice.

I see a smile a mile-wide, while you cruise down the slide.

I see that today, you don’t want to color with crayons.

I see you laughing hard when we do a silly dance.

I see that you don’t feel like using your words today.

I see a stack of blocks so tall you had to reach way up on your tiptoes to finish it.

I see you feeling like going to the gym is going to be too much for you right now.

I see a child who is perfectly and uniquely made, who will struggle and fall short and succeed and excel.

I see a child who is just right.

I see You.
The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. 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 Submit a Story page for more about our submission guidelines.
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PBS Kids Show ‘Dinosaur Train’ Puts Spotlight on Autism Acceptance

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The hit PBS Kids show “Dinosaur Train,” produced by The Jim Henson Company, is airing back-to-back episodes on April 6 and 7 to promote autism awareness, according to the network.

PBS teamed up with The Center of Disease Control and Prevention (CDC) to help families learn more about autism and to familiarize them with the CDC’s “Learn the Signs. Act Early.” initiative.

The episodes, titled “Junior Conductor’s Academy: Part One” and “Junior Conductor’s Academy: Part Two,” will introduce a new dinosaur, Dennis Deinocheirus. Dennis is very knowledgable about dinosaurs, but he has trouble making friends. Despite his difficulties socializing, Dennis finds common ground with Buddy and the other characters on the program.

“Like all dinosaurs, their new friend Dennis has his own dinosaur features,” according to a post on the show’s website. “And, like all of us, he has strengths in some areas and challenges in others.”

PBS stations across the country will also be hosting screenings and events for the episodes.

The episodes air on Wednesday, April 6 and Thursday, April 7, at 11:30 a.m in each timezone. Share your thoughts about the show on social media by using the #MeetDennis hashtag.

Dinosaur Train and Arthur celebrate #NationalAutismAwarenessMonth with all new episodes April 5 & 6 on PBSKids! Check your local listings for more: http://to.pbs.org/23bfHnx

Posted by Dinosaur Train on Monday, April 4, 2016

h/t GPB

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Why I Can’t Support Autism Awareness Month as an Autistic Person

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Shocking, I know. For many families with autistic children, or autistic people ourselves, this time of year is filled with families being excited for Autism Awareness Day/Month. Which is great. Good for them. If it makes more people hear about autism then I will agree that it is not a bad thing. But that does not mean I support it. When we say that we need Autism Awareness Month, we say we need a month to talk about autism. We say that our world is so incapable of understanding us that we need an entire month to teach them.

Think about it like this. Autism is classified as a developmental disorder. It causes difficulty in social communication, stimming behavior, etc. I am not even going to pretend that autism is “easy,” because it’s not easy. However, autism is not life-threatening. Look at something like Hunter’s syndrome, which causes a long list of life-threatening side effects and has a life expectancy of between 10 and 20 years. However, Hunter’s syndrome does not even have one day for recognizing and learning about it. It, along with many other diseases, get lumped into Rare Disease Day. And while that day is a great idea, it also severely limits the chances for awareness on individual rare diseases.

Let me just press this: I am not saying that we do not need a day for autism awareness. Of course we do. And I fully support it. However, what I cannot in good conscience support is an entire month for autism awareness. I can’t because I refuse to say that my struggles and my fight are greater than other people’s.

Finally, just let me say this. I support autistic people. I support our right to be allowed to live our lives, I support our ability to function in this world. But I also support and wholeheartedly agree with the people who say that autism is not something that needs to be cured or be fixed. Because I agree with them. And that is the other reason I don’t approve of this month, because it’s a month that a lot of people dedicate solely to raising money for research for a “cure” for autism. I don’t think we need a cure. I think we need acceptance. I think we need to look at each other and stop saying we are different. We need to stop and look at each other and say, “We are one. We are in this together. We will do this together.” We don’t need to change or bend. You don’t need to fix us, because we do not want to be fixed. We don’t need it. And I know I only speak for myself, but I wish everyone would stop trying to get us to be someone who we aren’t, and start letting us learn how to accept ourselves. Teach us who we are. Teach us to accept it. Please. Don’t force us to learn it for ourselves.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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