This Is What I’ll Remind My Son When Someone Makes Fun of Him

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But I see your true colors
Shining through
I see your true colors
And that’s why I love you
So don’t be afraid to let them show 
Your true colors
True colors are beautiful 
Like a rainbow

I smiled as I heard the familiar 80s tune playing from my phone. My son, Matthew, had signed to ask to use my phone. This was progress since he used to just take my phone. One of his favorite things to do is to play music from my iTunes. “True Colors” is one of his latest favorite songs to play.

While the rest of the song doesn’t necessarily fit, I feel like the chorus could be Matthew’s theme song. The songwriters, Billy Steinberg and Tom Kelly, didn’t know Matthew when they wrote it. He wasn’t even born yet. But when I hear that part of the song I feel like it was written just for him.

Matthew’s true colors:

Red

Red is for his charismatic personality. He has a way of winning people over. There’s something endearing about the way he can get people to do just what he wants without speaking a word. He takes a person’s hand in his and somehow has a way of making that person feel special… that he chose them to hold his hand. Once that person feels special, they’re like putty in his hand. A friend of ours was watching him for us one day after school last year. She sent me a picture of him in the baby swing at the park. I laughed and asked her, “How did you get him in there? He’s too big!” She said, “Well, he really wanted to go in that swing.”

Orange

Orange is for his love of vacuums. If you read my post, Whatever it Takes, you already know that he loves vacuums. I don’t think he’s met a vacuum he didn’t like. There’s a lot to love about vacuums; the rumbly sound, the slightly dusty smell, the feel of the air on your hands or face, the plastic to tap and the bumpy hoses to feel, etc. At Meet Your Teacher night, his new second grade teacher showed Matthew the vacuum she had bought just for him. The vacuum that he would be allowed to use on the classroom rug at the end of the day. (I would say his teacher knows something about winning people over, too.) At school, he works to be able to watch the custodian use the vacuum or the floor cleaner (that’s an extra special treat). There’s a local Chinese restaurant that we used to go to, and we would have to hold his hand extra tight when coming and going because he knew right where they kept their vacuum cleaner. One day, we were at a local department store and there was a worker vacuuming. Matthew had to sit down (criss-cross-applesauce) right there and watch him. This month we bought a new vacuum cleaner and almost every day he asks me to vacuum when we get home from school. My floors have never been so clean!

photo (9) (1) Yellow

Yellow is for his love of music. Both on his iPad and my phone, he’ll sit and pick music on my iTunes. He creates his own slideshows by picking a song and then going into the photos and looking through them. Right now he’s sitting next to me on the porch playing a video clip of Lady Antebellum in concert. He’s playing it over and over, and I think he likes the extra hooting and hollering of the fans. He’ll also select apps because he likes the music playing in the background. He’ll hold my phone up to his ear and listen very intently. He’s obviously not too picky about his music though, because he’ll still ask me to sing to him. I can’t sing, but Matthew doesn’t seem to care.

Green

Green is for his love of jumping. Ever since he could walk he has loved to jump. He also jumps when he’s super excited about something. (After the store worker moved to another section of the store, but still within earshot, Matthew looked like a jumping bean. If jumping beans squealed and flapped, that is.) During therapy he’s still able to get his therapists to “jump him.” He faces his back to them, and they pick him up at the waist and jump him into the air. It’s definitely an upper body workout for them, and there’s going to come a day when they just can’t physically lift him anymore. The week before school started we tried out Helium, which is a trampoline park. The place was something out of his dreams, I’m sure. There’s no doubt that we will have to go back. A couple weeks ago we went on a bike ride, with me pedaling and Matthew in the ride-along carrier. I swear I didn’t pick this route to torture him, but we went past a festival, and they had about three different bouncy areas and then we passed four different block parties, and they all had bouncy houses. I thought he was going to burst out of his skin! He signed “jump” at me the rest of the day.

Blue

Blue is for his sensory seeking ways. Touchingtapping garbage cans, wastebaskets, walls, orange cones, the inside of the freezer, boxes, coffee cups; scratching box lids, bottoms of slippers, lids to coffee cups, the sides of the car; pounding walls, doors, wastebaskets, garbage cans; stimming by flapping his face with a kleenex, paper towel, receipts, his microphone with a plastic piece that hangs down. Hearing: most of the touching from above creates sounds, music, the vibration of the car when the window is rolled down, shaking things to make noise.  Smelling: things before he eats them, Daddy’s coffee, Mama’s tea, bottoms of shoes and slippers, flowers, things made of plastic, rubber, wood, cardboard.

Purple

Purple is for his ability to problem solve. An overturned wastebasket makes a tall stool. We find these right under closet doors with latches. Luckily for us, he has not figured out how to undue that particular latch… yet. In the laundry room he’ll overturn laundry baskets to get cleaning wipes on the shelves above the sink. Just today he wanted to get into the basement (which was latched). He stood on a giant package of toilet paper and found the kind of latch he can undue. Fortunately, he was caught red-handed by Daddy. One night at dinner, my daughter, Abby, went into the kitchen to get something and when she returned she exclaimed, “Why do I have more green beans now?”  We looked at Matthew’s plate and he didn’t have any. Pretty clever. If she would have been a green bean lover, she probably wouldn’t have even noticed. He’ll also make up signs for words if he doesn’t know the sign. Then he consistently uses that sign to stand for that word. That takes some huge problem solving skills.

I know that he’s at an age where his classmates and peers still accept him, because that’s how they have always known him. As Abby often says, “That’s just Matthew.” But I’m sure there will come a time when someone will say something to him or make fun of him for the behaviors and loves mentioned above. I won’t always be there to stop it or defend him, but maybe I can keep reminding him of these words…

But I see your true colors
Shining through
I see your true colors

And that’s why I love you
So don’t be afraid to let them show
Your true colors

True colors are beautiful
Like a rainbow

This post originally appeared on Autismic.

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Supermodel With Rare Skin Disease Proves Different is Beautiful

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Chantelle Brown-Young is helping to redefine the face of beauty.

The 20-year-old from Toronto, Canada, has a pigmentation disorder called vitiligo. Vitiligo creates unusual looking patches of white on her skin where melanocytes, or pigment making cells, have been destroyed, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. About one percent of the world’s population suffer from the disease.

.“A lot of people have a story and a background,” Brown-Young said in her America’s Next Top Model audition tape. “But mine is painted on my body.”

Despite her unconventional appearance, Brown-Young decided to pursue a career in modeling and got a big break when she was selected as a contestant for season 21 of America’s Next Top Model. She was encouraged to audition for the show after Tyra Banks saw her Instagram account, according to the New York Post.

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Via Winnie Harlow’s Instagram account.

 

However, it wasn’t always so easy for the model to embrace her appearance. She was bullied and picked on as a child for the distinct markings on her skin, she told NBC Today. Kids would call her “cow” or “zebra” and other hurtful names.

The only person that can make you feel that you aren’t beautiful is you.” Brown-Young told the outlet. “You can’t let someone else lower your self-esteem because that’s what it is — self-esteem, you need to first love yourself before you have anybody else love you.”

Check out some of her photos below: 

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Via Winnie Harlow’s Instagram account.
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Via Winnie Harlow’s Instagram account.
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Via Winnie Harlow’s Instagram account.
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Via Winnie Harlow’s Instagram account.

 

To check out more of Chantelle Brown-Young’s unique beauty, visit her Facebook page or follow her on Instagram.

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Why I Stopped Trying to Make My Son ‘Typical’

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When Morgan was first diagnosed with autism, my husband and I were in “fix it” mode. Our end game was that Morgan would be indistinguishable from other children.

We wanted him to pass for typical. We wanted him to be happy at all costs, as long as those costs were within our scope of reasoning.

We were determined.

I didn’t care that the little voice in the back of my mind screamed this approach was wrong for us. Nope, it didn’t matter. My son’s voice and the atypical way he spoke? That needed to change. I completely neglected to remember that I should be thankful to be hearing words, finally. Those fidgeting and flapping fingers? Those needed to stop. All of the books said so. Typical kids don’t do that.

Scores needed to climb higher. He needed to blend with the other children. He was miserable — so were we. The more I pushed for him to be less of an individual and part of a herd, the more behaviors we saw.

This didn’t last long.

I (I say “I” because my husband traveled a lot in those days, and I was the primary caretaker) wasted time and energy. I didn’t see that this wonderful boy who had been in front of me the entire time was great, just the way he was. He needed support, not to be changed. The only changes that needed to be made were the parenting and teaching methods being applied to him.

I don’t remember when the epiphany occurred, but when it did, breathing became a bit easier. Morgan began to smile more. We, as a family, enjoyed life more. We understood each other better. There was no more suppression of autism, there was only expression of Morgan’s truest self. Sometimes his truest self wasn’t the happiest child or the nicest, but he’s been himself and not some representation of what I wanted him to pass for. This begins with allowing him to stim and extends to indulging him in his love of Thomas the Tank Engine at the age of 10. We used to fight against those things.

He’s in what is considered middle school here and with it comes clubs, a dance or two and some pressure to fit in. Morgan doesn’t really feel that pressure, I think, but he misses having friends. A teacher, when I was chatting with her, offered up some suggestions that would, in a sense, eventually allow Morgan to “fit in and pass” as a typical child. I laughed.

I told her that “being typical” isn’t possible and therefore, isn’t on our radar. I don’t want my son to pass for something that he is not. Morgan is the most genuine person I know, and I want him to stay that way for as long as possible. I don’t believe that teaching him to mask his personality, his thinking, his mannerisms or his truest self is the best way to go about things. The teacher saw my points and agreed.

I can’t wash my son typical. I don’t want to. I don’t want to compare him to his typically-developing peers and feel sad or long for something we’ve never had. I don’t want to push him to be something he’s not. Instead, I would rather push him to be the best he can be. The less I’ve pushed Morgan to “pass,” the more I’ve allowed him to play with his autistic peers, typical peers who get him and just “be,” the happier he’s been.

That’s the end game for me, right now. Happy.

I understand why, out of ignorance, I wanted my son to assimilate and “become typical.” I thought that, with enough hard work and diligence, he could figure out how to be typical and happy. My very literal brain was taught by society that my son would never be happy so long as he was autistic. That he could never be happy as an autistic.

I’m so glad that I stopped listening to what I was told. Society is wrong.

Being atypical is not easy.

Being autistic is not easy.

But you can be happy.

It just takes the right environment.

Path less traveled

This post originally appeared on Deciphering Morgan.

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Parent Like There’s No One Watching

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My friend told me once that I could find the silver lining in anything. Here’s a big one that I’ve found: being a parent of an autistic child has humbled me and made me a better parent. Specifically, I’ve stopped caring about what strangers think about my parenting skills. It took me a lot of searching to find that particular silver lining, and it wasn’t easy to find.

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Sometimes Bella can’t handle all the people at the store. Sometimes she doesn’t want to leave the spring fair at the elementary school. Sometimes she can’t share or take turns the way other kids can at her age. It could be anything or nothing at all. But her reaction is often huge, her meltdowns epic and when they’re public meltdowns, well, you can imagine how fun that is. I’ve been screamed at full-blast in Target over a toy I didn’t buy. I’ve had to coax an anxiety-overloaded child off the floor at Jo-Ann Fabrics because she’d just had enough. I’ve left parks carrying my child like a sack of potatoes kicking and screaming because she wouldn’t leave any other way. I’ve been slapped, scratched, kicked and almost bit while strangers watched (or pretended not to watch but lingered just a little too long to leave any kind of doubt as to whether or not they were shopping or watching).

It’s not always meltdowns, though. Sometimes it’s just all the quirky things you don’t notice around the house but are glaringly obvious when you venture out into the real world. I had to tell Bella once that no, not everyone in the store thinks it’s funny when you stand in front of their cart, put your hand up and shout, “STOP!” Also, kids tend to notice when your daughter licks every doorknob in the hallway at morning drop-off. Her eccentricities are amusing at home but were mortifying in public. I found myself saying, “No, Bella…” the entire time we were out, which only aggravated me and put her on edge.

I used to walk out of public places feeling embarrassed and humiliated. Partly because of how my child behaved but also partly because of how I behaved. So often, I found that I was parenting for the benefit of those around me. I felt their eyes watching me, judging me and so I would perform for them.   said what I thought I should say, what I thought people were expecting me to say. Instead of calmly and patiently waiting for Bella to cool down before talking to her, I would jump the gun and reprimand her when she wasn’t ready to process what I was saying. I would speak harshly to her so people could hear that I was in charge, that I was doing the right thing — even though the right thing for Bella doesn’t look or sound anything like what the right thing might be for other kids.

My worst parenting moments, the ones I am least proud of, happened because I was trying to impress a bunch of strangers I’ll probably never see again.

One day, after a particularly awful meltdown at the grocery store, I was driving home and had a simple but important thought flash in my head:

I’m not responsible for those people.

I have no control over those strangers’ reactions or perceptions of me. To put it simply, who the hell cares what those people think? The only people’s opinions that matter, the only people I am responsible for are my kids. I’m only beholden to them. I care about what they think of me and how they feel. No one else. Those lingering people in the store can just f**k off.

Once I stopped trying to impress strangers, my life got a whole lot easier. I don’t worry about what people will think of Bella and her behavior in public anymore, because I seriously don’t care. I focus only on my kids and how they’re feeling. If they’re happy, I’m happy. If they’re upset, then we deal with it the same way we would deal with it at home. Sometimes that means I have to stand in the store and wait a minute for Bella to pull herself together. Sometimes it means I have to stay calm and not react when my daughter tries to claw my arm. I know it’s because she doesn’t know what to do with the overwhelmingly intense feelings she’s experiencing, and reacting physically towards me is the only way she knows how to deal with those feelings. Other people don’t know that, but I don’t have to explain myself to them. If someone says anything dumb, I ignore them — I literally pretend like they’re not talking. If someone lends sincere help, I accept or decline politely (depending on whether or not it will make things better or worse, in my opinion).

People stare, and I’m sure some people go home and judge the hell out of me. Why should I care? I get to go home and feel good about how I treated my children.

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This girl’s opinion of me means a whole lot more than your opinion, lady.

This post originally appeared on 649.133: Girls, the Care and Maintenance Of. It was also featured on BonBon Break and The Huffington Post.

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Precious Photos Show the Unparalleled Bond Between a Girl With Autism and Her Cat

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We’ve read and reported on a few stories about therapy dogs. This story is about a cat, though — one who’s helping a little girl with autism connect with the world. cuddles-iris-and-thula

In the photo above, 4-year-old Iris Grace, a child who’s made headlines before for her incredible paintings, snuggles up to her four-legged best friend, Thula (pronounced “Too-la”).  The Maine Coon joined Iris’ family in February, according to her mom, Arabella Carter-Johnson. Since then, the pair have been inseparable.

“It’s incredibly comforting for me to know Iris can laugh and play, just be together with no pressures, no struggles with language,” Carter-Johnson told The Mighty in an email. “They just understand one another.”

iris-playing-with-thula-handshake Up until last December, Carter-Johnson had given up hope on finding Iris a faithful friend. Despite her mother’s efforts, the 4-year-old showed little interest in socializing — until she met a family friend’s cat. And when Thula arrived a few months later, their connection was instant.

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With Thula by her side, Iris wakes up easier each morning. Usually, she’s nonverbal, according to her mom, but in the last few months, she’s talked more and more. When Thula tries to jump on her iPad, Iris will say, “Sit, cat.” The two always sleep side-by-side.

“If Iris wakes during the night, Thula is there to settle her,” Carter-Johnson wrote on her blog. “It’s as though she instinctively knows what to do.

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Iris’ mom hopes that when people read her daughter’s story — whether it be about her friendship with a cat or her paintings — they’ll change any preconceived notion they had about autism.

“I want people to see the potential in autistic children,” she told The Mighty. “It’s all about opportunities, both Iris and Thula are proof of that. Who would have thought a [little girl] would inspire millions worldwide with her paintings or a cat could ride on a bike and take baths happily with a child?”

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Bonus! Watch the video below to see Iris’ amazing painting talent. And for more photos of Iris and Thula, visit Iris’ Facebook page. All photos via Arabella Johnson-Carter / IrisGracePainting.com.

h/t BuzzFeed

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On Learning My Second Child Can Move Her Legs

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My daughter can move her legs.

I figured she would. Why wouldn’t she? Lightning doesn’t often strike the same place twice.

And by lightning, I mean spina bifida. And by place, I guess I mean… me.

I knew she would move her legs. Still, I was not prepared.

For the triumphant force of it. For the sight of kicks and squirms. For the ultrasound tech’s cheery exclamations saying, “Look at those legs move! She is kicking up a storm in there…”

I wasn’t prepared for how those words, lovely and true, would tear at my heart. It was just too much, and I wept in that soundless way – the way that collapses your insides and leaves your belly tensed and quaking. The crinkling of the butcher paper gave me away. The room went silent as my husband and I joined hands.

But it’s not what you think. Or at least, it’s not what I would have thought. If someone had asked me to predict how I would feel the moment I heard those words, I would have said one word: relief.

But relief was not the thing that hurt. Neither was joy. Neither was gratitude.

I did not feel relieved at all. I felt torn. And protective. And jealous somehow. I was watching my daughter flit around the screen, but I couldn’t stop thinking about my son.

The thing is, my daughter still feels abstract. My son does not. I know my son. I know him in a way that I do not know my daughter – not yet. And I know that I love him. I know he has value. I know he will face challenges in this life that his sister will not. Somehow (although even as I write this it sounds strange), rejoicing over legs that move felt wrong. After all, my son can’t move his legs – but there is so much more to him than that.

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I guess I didn’t want to admit that legs matter and when those joyful words fell upon my ears (“Look at her legs move!”), I felt a protective urge to say – so what?

But I knew “what.” I knew the moment I heard that knee-jerk question burst inside my head. The “what” is the running. It is the hopscotch and the trampoline. It is taking the stairs. It is reaching the highest shelf.

Still, to me, those things are unremarkable. They are secondary. They are not the real “what” – the “what” that I wept for.

The real “what” is in how she will be treated – because this world is designed for people like her. And it will value her automatically, in a way that it is still learning to value her brother.

Relief was not what moved through the air that day. I think that’s OK, though. There was still wonder. There was still anticipation and excitement for this new life, and we were thankful. I am becoming a mother of two – two people who will be different on the outside, just like on the inside. I am still learning what this feels like.

I should mention that my daughter is beautiful – I can tell already. She will have her own struggles and flaws. Her life will not be completely typical or completely perfect – at least, for her sake, I hope it won’t be.

And she will move her legs.

But there will be so much more to her than that.

***

For those of you with multiple children, did you ever worry about (or feel protective of) your first while waiting to meet your second?

If you, like me, have a child with a disability, was it hard knowing how to feel about baby #2 being “typical?” Did you feel relief? Joy? Mixed feelings?

This post originally appeared on What Do You Do, Dear?

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