These Are the Do’s and Don’ts of Interacting With People With Dyslexia

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Hi there, my name is Rebecca, and I suffer (although I find my condition to be a blessing) from a learning disability or syndrome called dyslexia.

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The dictionary defines my syndrome as a developmental reading and spelling disorder that occurs when the brain does not properly recognize, transmit and process certain symbols, whether these symbols are letters or numbers. What this means for me is that as a 20-year-old I have the reading age of a 12-year-old and that when I write letters, although I mean to write or type a “d” I may end up writing a “b” or a “p” or a “q” or even a “g.” This can happen with many letters and even some numbers. It also means that I hear word sounds (mainly vowel sounds) totally different than normal people do, so you may write “business” but I will write “buissnes.”

On the face of it you may think that this does not sound that bad, but the syndrome is so much more that. My thinking pattern is totally different to other people’s. Also I have to deal with some other issues because of my syndrome that are not related to learning — like a paralyzing fear of the unknown. This fear means that I will stress about anything new in my life, whether that is learning something new, doing something new or being somewhere new.

“Stupid” or “dumb” were the words most often used to describe me. Kids can be very cruel and although I always knew I wasn’t (thanks to my great family) I often felt both these things. It was my mother who first saw that I was different; she could see that I was learning things in a different way to my siblings and in first grade, my mother had me tested by an educational psychologist despite the fact that my teacher told her that she was just a neurotic mother and I was merely a slow child.

Up until grade nine or ten, school was probably one of the worst things in my life. In my experience, the educational system in South Africa just doesn’t cater to children who need to learn differently. The most irritating thing about school was that I knew I was intelligent, and even though I understood concepts, I just couldn’t put them down on paper in a coherent way no matter the subject. But thanks to some dedicated teachers and the most amazing mother (who even homeschooled me for two years to help me deal with my disability), I made it through and found a place to stand tall in grade 10.

I came to see that my disability took nothing away from my intelligence; it only added a unique perspective to the world. I realized that if I didn’t accept myself, others wouldn’t. Although I have come to understand and even love my disability, I am not over it, and even though I have improved I will never be rid of this syndrome. Each day is a challenge, but I will continue to accept the challenge and strive to learn from it and use my experience to help others like me.

So if you what to help me or others like me, you may want to remember these things.

Please don’t:

  • Think or talk to me like I am someone of a lower intelligence level; I actually have a quite a high IQ. I just have trouble putting it down on paper or reading it out to you.
  • Try and fix me or come up with solutions to my problems. I know you may just want to be helpful, but unless I ask for your help or see you as one of my support system, I may see your attempt to help as offensive.
  • Call me out in public (whether in person or on a social media) about my spelling or reading abilities. Although I have lived all my life dealing with people embarrassing me, it’s still a lame thing to do.
  • Tell me you know how I feel and that when you were younger you had a little bit of dyslexia. Because you didn’t; dyslexia is not something you have and then get over — it is a life-long struggle.

Please do:

  • Lend me your help if I ask for it.
  • Ask me as many questions about my syndrome as you wish.
  • If you think your child may have a learning disability get them tested and then get them the help they need.

This blog originally appeared on Irresistibly Fish

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My Kid Is the One Trying to Get Inside Your House This Halloween…

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It happens every year.

There’s a lot of prep and apt timing on our part of getting the costume on (and feeling right). Sometimes only half a costume actually gets worn. There are no wigs, masks or make up. Usually our prep includes several weeks of practice trick-or-treating at both our home and therapy. Due to the fact that in the past Timothy had absolutely no language, there was a bit of explaining at every door by Dad.

“Timothy has autism and doesn’t use words,” which gravitated to just a loud, “Thank you,” to eventually just a wave and smile if we got far enough. By “far enough,” I mean around the block without a meltdown.

While this year, he’s gained the ability to actually say “trick or treat” most of the time, he lacks the understanding and social graces of the average grade one kid. Autism’s kinda like that.

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So this year, I’m warning all of y’all in West Brant that you may have a home intruder on your hands. He’s about 3-foot, 11-inches tall, 50 pounds and will be dressed as a charming little Batman wannabe, who may or may not be wearing a mask. He’ll be excited, and he’ll be loud. He may try to run inside your house, but please have patience; he means no harm. His daddy is there and will be watching closely nearby trying to make his night as successful as possible.

Because Halloween should be enjoyed by all kids… kids with autism, Down syndrome, leukemia, cerebral palsy, kids who are walking or in a wheelchair — whatever their exceptionality may be. They are all kids.  Please be kind and treat them the same. Different is not wrong or weird. It’s just different.

Have a safe and Happy Halloween!

This post originally appeared on The Book of Timothy.

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Photographer Combines Portraits With Handwritten Letters to Change the Way We All See Epilepsy

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James Smolka was photographing the effects of Hurricane Sandy in Lake Hopatcong, New Jersey, when he first met Scott*, a man whose home was severely damaged during the storm. Scott, pictured below with his wife, asked Smolka, 28, what else he photographed.

Smolka told him about his project, “Falling Sickness,” a series of portraits and letters from people who have epilepsy. He’d been diagnosed with grand mal seizures in the third grade and underwent brain surgery in high school; today, he takes medication to control seizures. He set out to show the faces of epilepsy — how the nervous system disorder doesn’t discriminate against age or sex, how someone you know may live with it without your realizing.

Scott stood shocked — not because of the project, but because Smolka so openly talked about his epilepsy. Scott rarely spoke about his own experience with it. His own diagnosis felt shameful, like something to hide. A lack of control over his own body wasn’t something he wanted people knowing about. Now, he stood before a person who could say, “I’m epileptic” without hesitancy. For a second it made him smile.

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“Falling Sickness” has several purposes. For people with epilepsy, the photo series offers comfort — comfort in knowing others feel the same way about the disorder. Comfort in not being alone. It’s a chance for people, like Scott, to talk about their condition without embarrassment.

“There’s nothing wrong with having epilepsy. It’s not fun. It sucks,” Smolka tells The Mighty. “But, there’s nothing we can do. Each day we’re alive, we have something to be thankful for.”

One in 26 Americans will develop epilepsy in their lifetime, according to Citizens United for Research in Epilepsy (CURE). An estimated 3 million Americans and 65 million people worldwide currently live with the disorder.

“I want people to see how common it is,” Smolka says. “Most people just view someone with seizures as someone with problems. An everyday person could be epileptic.”

Below, you can view more photos and notes from people with epilepsy. Visit Smolka’s website for more.

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*Scott’s last name is being withheld for privacy. 

h/t BuzzFeed

 

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I Used to Pray I Wouldn’t Have a Special Needs Child

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IMG_6884 I never thought I’d be a special needs mom. In fact, the thought of that used to absolutely terrify me. I remember reading about all of the things that can go wrong when we were trying to get pregnant, and just begging God to give us a healthy child. Praying that I’d rather have no child than one with special needs. I was clueless, and honestly, I make myself a little bit sick. I was absolutely terrified of having a kid with a disability. To the point where I literally cried daily when I was pregnant with Knox, just worrying about him. Looking back, I am so glad God didn’t listen to me. I’m so glad Knox is here. Because really, I was the one with the problem, not him.

I had no idea what it would be like, and how could I? I was close-minded and had no personal experience with anyone with special needs, aside from seeing a person with a disability every once in a while out in public. I just didn’t know. In fact, I had no idea. That’s not to say that I don’t wish Knox could instantaneously be rid of autism forever — because, yes, that would be fantastic for him to not have to struggle. But the fact that he has autism doesn’t make him any less of an amazing kid. It doesn’t make me want him any less. If given the choice, I’d choose him exactly as he is, every single time. Because knowing him is so much better that not having a clue.

Autism is a weird thing. It makes me furious one second, makes me laugh the next, and right when I think I have it figured out, it says, “Ha! No you don’t!” This has been a super crappy parenting week at our house. Knox is getting in trouble at school for the first time ever, and he’s being defiant at home, as well. There’s been lots of running off, swatting, kicking and even spitting. I don’t know where this is coming from because Knox normally has the best disposition ever. He is highly stubborn, and my only thought is that he’s just reaching an age where the frustration over his communication skills has pushed him a little over the edge.

Also, I think he just plain misses me. I work full-time, and by the time I get home, I have two hours with him before he goes to bed. Most moms know that the hours between 5 and bedtime can be the witching hours where your kids lose their minds and cause you to lose yours right along with them. I feel like so much of my evening time with Knox consists of disciplining him, and it makes me feel awful. My guilt eats me alive sometimes. I tell myself I need to be this great parent, do lots of fun outings and activities and spend tons of quality time with my children. But then reality hits, and I feel like all I have to offer them are a couple of worn-out hours of my life, where I’m no fun to be around at all. There have been a lot of tears lately (mine) and yelling (me) and hitting (Knox) and frustration (everyone).

And the thing is, there’s no magic answer. There’s no perfect solution. Parenting is always hard. I don’t care if you stay at home, work full-time, have 10 kids or one. Being a parent is the hardest job on the planet. Adding any sort of special circumstance only compounds the stress. I’m learning in all of this, through this hard season, that all I can do is pray and ask for God’s help in all of this. To seek His face and just bury myself in His word. To pray that I don’t screw this up too much. To pray that God removes the guilt from my spirit. To pray that God revives me and gives me the energy I need to keep up with this kid. And to pray a prayer of thanksgiving that He knew all along just the boy He was going to give me.

Because even when it’s hard, Knox is worth it all.

This post originally appeared on My Coffee Is Cold.

Read more from Jessica Wyndham on The Mighty:
He Doesn’t Care… Why Should I?

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How Should You Picture a Kid With Disabilities? This Way.

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When strangers used to ask Rachel and Sam Callander what was wrong with their daughter, the parents offered a lighthearted explanation: superpowers.

At the time, Evie Callander, who was born in 2008 with a rare chromosomal disorder, clearly experienced the world differently than other 2-year-olds. Certain sensations — the sound of electric sliding doors, for example — overwhelmed and upset her.

But that lighthearted answer — “superpowers” — turned out to be more true than her parents first realized. Because in her short, 2-year-long life, Evie exhibited a deeper, stronger, practically glowing sense of strength and love. It doesn’t get much more super than that.

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When Evie died, her parents kept her close to them. Her pictures cover their home. They talk about her often.

“We knew we had been changed for the better because of her and people could see it too,” Rachel Callander, 33, told The Mighty. “They knew it was hard and we were really struggling. However, within all the sadness there was always a sense of pride of who she was and what she brought to the world.”

The entire experienced inspired the Callanders to celebrate other children with superpowers. They began photographing kids with disabilities in New Zealand and surveying their parents. The main question? “Tell us about your child’s superpowers.”

Portaits and quotes from 72 families now make up the “Super Power Baby Project” — an art book the Callanders hope will inspire others to look past disability.

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“We want people to see humanity — to see the images and smile and say things like, ‘What a lovely child, how beautiful,'” Rachel Callander told The Mighty. “We want them to be struck by the children’s uniqueness, their innocence, their bodies, their eyes, their deepness — just as they would a stunning image of any child. We want people to see the children as their parents see them — with eyes of love.”

Sometimes, the project even helps parents see their own children in a new way. Callander says, when taking the initial survey, one participant’s mom realized she’d never talked about her child’s disability in a positive manner.

“She said she was no longer afraid to share him with the world,” Callander recalled. “We knew at that point we were onto something important.”

The book doesn’t view superpowers in a turn-yourself-invisible, fight-evil-villians, wear-a-flashy-costume sort of way. Its goal is not to trivialize a life with disability. It’s only out to celebrate and highlight strength.

“These kids really do have a deeper capacity for unconditional love, empathy, compassion, and they do bring out a deeper sense of love in people.They do promote a greater patience in others,” Callander told The Mighty. “When I think of the things the world needs right now, it’s love, patience, kindness and acceptance of others. These qualities are world changers in our opinion.”

Below, you can watch Callander’s TEDxAuxland Talk, where she further explains the project. And if you’re interested in ordering a copy of the book, head here. You can also get updates on Facebook.

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The Best Part of Special Needs Parenting. No, Really.

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unnamed A few months back, I got an email asking a few of us special needs moms to share the gifts of special needs parenting. The responses would be published, and the world would probably be a better place. I like to see my name in lights as much as anybody else, but I looked over at my autistic son who was talking to a crayon, I looked down at the stack of bills due this month, and said, yeah, maybe not today.

But the question stayed with me.

Don’t misunderstand me here. My son is amazing, and I love parenting this kid. But the question — as I decided to interpret it anyway — was what is great about parenting a child with special needs, not what is great about your kid with special needs. The latter is a much easier answer, but that’s not the answer I set out to find.

I thought about it. If you get past the therapies and the bills and the education issues and the worrying about the future, keep going beyond all the doctors and the teetering patience and the stress, if you really, really look, is there something back there, hiding, that is uniquely awesome about all this?

I had come up empty-handed for a few months now. But then…

We were cruising through the Ace Hardware, and my son found some PVC piping. He plopped himself down on the floor, grabbed a few pieces, and started configuring them together. A sales woman approached us, asked if we were finding what we needed, and in response, my son asked, “Oh hi, can you make a B-29 from this?” The sales woman said to me what everyone says to me, “I think you have an engineer on your hands here.” I smiled, and said what I always say. “Maybe.”

My son’s measurable mechanical talents live right next door to the fact that, at 8, he thinks it’s perfectly acceptable to sit in the middle of the PVC aisle at Ace Hardware and assemble a WWII aircraft. An engineer? Maybe. The truth is I don’t really care.

Wait. Say that again. The truth is I don’t really care. At all. I have no attachment to any plan that my son become an engineer, a pilot,or the CEO of the next Google.

I have great attachment, however, to the hope that he is happy.

Well, wow.

In the middle of a hardware store, I stumbled upon the special needs parenting pot of gold. If my son were typical, if we didn’t work so, so hard on what comes naturally to other kids, I can assure you that I would have his happiness tied to long-term education and career goals, all bundled together with socially-praised measures of success.

I have absolutely none of that.

I want my son to find his place in this world, wherever that is, and I want him to be happy. That’s it. I think this is about as pure and lovely as it gets. For the first time ever, I can honestly thank autism for something.

Sincerely,
Becca

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This post originally appeared on Sincerely, Becca.

Read more from Rebecca Masterson on The Mighty:
Dear Mom in the Waiting Room

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