Why I Wrote This Letter to the Class of My Daughter With Albinism

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This is normally the greatest time of year for the introverted side of me. I survived the summer and now I get to send my little one back to school. Finally, I get to sink into a quiet routine where my work is completed in the daylight hours, instead of between 9 p.m. and 2 a.m., and no one is spilling my tea.

But this year is different. This year is “for realz.” This year my daughter with special needs will leave her special education bubble and take a seat in a mainstream classroom. And instead of eagerly awaiting the start of school, my heart feels like lead and a sad lump has taken root in my throat.

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I have to remind myself that she will have an aide by her side. I have to tell myself she is very different from me, and quite possibly, the strongest and most extroverted person on the planet. Her laugh is contagious, and she will hopefully find a few kids who will truly get her.

Instead of sitting around imagining the worst of nosy questions going unanswered and looks being exchanged, I needed to do something productive to help ease the transition.

I decided to make this letter for her. And, of course, she wouldn’t sit still for photos, so I ended up including all the attempts that I took, which, in the end, capture her in a more real way than a posed picture ever could. 

And I pray the kids in her class will be able to take it in and choose to be patient with my funny, brave and beautiful girl.

All about Juniper

Hi! My name is Ruby and I’m in your class this year.

There are a couple things about me that are unique, but I’m still learning to talk, so it’s hard for me to explain with words.

I prefer to wear big shoes & coats, the extra room feels more cozy to me.

I have something called Albinism“Albinism” is a fancy word that means my body was born without color or “pigment.” It affects my eyes, skin & hair.

Because of Albinism:
• My hair is white like Elsa’s from “Frozen.”
• My skin is white & I always wear sunscreen so I don’t get sunburned.
• My light blue eyes don’t see clearly & also move a little from side to side.
• I have to hold things near my eyes to see.

I might get closer to you than other people do, but I’m not trying to be rude or make you uncomfortable, I just want to see you better.

If you wave at me instead of using your words to say “hi,” I might not see or recognize you. Other times I might accidentally bump into you.

I can’t understand the emotions on your face. If we are playing together and I do something that makes you mad, please tell me nicely with your words exactly what I should stop doing. Otherwise I might not even know your are upset!

Speaking isn’t easy for me, but the more you talk to me, the faster I will catch up with my words & be able to talk to you.

Even though I’m different from you in a couple of ways, I’m the same in many others! I love to laugh, run and play.

My favorite things:
• Hobbies: Drawing, running races, singing
• Movies: “Big Hero 6” & “The Amazing Spider-Man”
• Toys: Barbies, cars & doll houses
• Food: Macaroni & cheese, ice cream
• Books: “Curious George,” “Pinkalicious,” “Mother Goose”
• Holiday: Halloween (dressing up is the BEST!)

Please be patient with me and I hope we can be friends!

Follow this journey on Katecosgrove.com.

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A Note to My Difficult-to-Say (And Even More Difficult-to-Understand) Condition

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Autosomal Recessive Ocular Albinism: A condition with a long-winded name that takes forever to pronounce and even longer to explain. It’s a condition that struck my unsuspecting family like a bolt of lightening. It’s an ever-growing pain in the rear of my eyes that strikes unexpectedly and makes me feel like the “retard” society claims I am.

The day my mom and dad found out about your presence was, oddly enough, the day of the Challenger disaster — January 28, 1986 — when I was just a day shy of 4 months old. My parents sat on the side of the road as they watched their dreams for me go up with the rocket, only to explode minutes later.

Little did they know the life I was about to live would be one hell of an adventure.

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From the start, your rarity struck doctors as odd, and I spent my early years being poked, prodded and measured because of you. They wanted to know more about you, why you came so suddenly to a couple who had no albino traits in the family, why I wasn’t fully albino, why I would flinch when someone shined something in my face, why I would panic in crowds and get lost in the snow, why I just couldn’t focus without a crazy head tilt or why I have what I now jokingly refer to as “my gangsta lean.”

School was a big let down, and you did everything to make it hard on me. But teachers looked beyond you for the most part and saw the brains behind the blindness. You might have held me back temporarily, but not for long.

You became a bit of a pain growing up; I was never quite the normal kid my parents tried to raise. You were the reason I got beaten up, tossed off retaining walls, shoved into fences and had rocks thrown at me. Kids are so cruel (and they aren’t much better in adulthood, either). I missed out on job opportunities because of you, and college entrance exams became a hassle because your picky attitude wouldn’t let me read scantron sheets. Throughout my entire life, people assumed I was stupid because everything I saw looked like a crappy pixelated camera phone pic from 2005. I’m also face blind because of you, which makes situations awkward when meeting new people. (Raise your hand out there if I ever referred to you as someone else.)

But life has an uncanny way of turning itself around.

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As the years went by and I entered adult life with you still shaking my eyes and rattling my brain, I managed to live out many of my dreams. I went on to college and ultimately chased down my childhood dream of working for Disney. I defied the odds against me by reaching goals they told my parents I would never reach that day back in 1986 — from riding a bike to working a computer to even reading a printed word.

You still rear your ugly head some days, as I work in my ticket window and get weird stares from guests while I read their IDs. I get my fair share of rude comments and often feel embarrassed asking for help. And on some days, you fry my brain so hard I’m shaking in pain from the migraines you give me. (C’mon, give me a break already!)

Looking back on the almost 30 years I’ve been on this planet, I’ve learned one thing.

You don’t define who I am. I do.

My life may not be easy, but I can’t let that stop me from making it in this world. You will always be a constant struggle, but because of you, I am here.

I made it, whether you were in my corner or not.

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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Baby With Albinism Has Incredible Reaction to her Mother's Singing

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This video will make you melt.

Little 7-month-old Louise has albinism, according to the video below. Albinism is an inherited condition where people are born with little or no pigment in their eyes, skin or hair, according to the National Organization for Albinism and Hypopigmentation. It also results in vision problems.

Louise only recently got glasses and was able to see her mother for the first time, according to her YouTube channel. In the video below, she gets adorably emotional while her mother sings “Amazing Grace” to her.

Watch the incredibly sweet interaction in the video below:

h/t GodVine

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To the People Who Said 'Let's Give It a Try'

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No.

It’s a word we hear a lot. As a 17-year-old, I’m told “no” sometimes on an hourly basis. This may have to do with the fact that I ask the difficult questions… but that’s a topic for another day.

See, if i had a dollar for every time someone has told me, “Sorry, but no, you cannot do that,” I would be rich — not let’s-buy-five-convertibles rich, but rich.

I have an inherited genetic condition called oculocutaneous albinism, that causes a lack of pigment in my skin, hair and eyes. Since my body doesn’t produce the coloring I need in my eyes to see, I’m blind. Because I have little pigment in my skin, I can become a lobster in less than five minuets when outside. The sun is my frenemy — without it, I can’t see a darn thing but too much and all I see is pure white.

Between my blindness and my extreme sun sensitivities, I cannot even begin to count the times I’ve been told “no” because it would be “too dangerous” for me to participate.

But I also don’t think I could count all the times someone has told me or my parents, “If she wants to, let’s give it a try.”

I can not begin to thank the people who looked past my disabilities and let me be a kid. Thank you.

Thank you for allowing me to participate on an equal level with my able-bodied peers.

Because it’s not every day a blind girl whose arch nemesis is the sun gets to play soccer and t-ball or swim competitively on a community team for 12 years or play in band and participate in marching band. It’s not every day someone like me gets to attempt more daring things like downhill skiing, ice skating, rollerskating, rock climbing, hiking and zip-lining.

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Thank you, not just to the adults who have supported me throughout this time but also to the other kids who may have had to adapt their playing and wait around a little more so I had the chance to just be a kid.

I also love taking pictures and working on my photography skills. You can see some of my photos on my Facebook page at www.facebook.com/photoswithoutsight.

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

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What I've Figured Out So Far About Autism and Christmas

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Christmas in our home probably looks a lot different than it does in “typical” homes. We don’t leave cookies out for Santa or put on a big production about him coming. And when it comes to toys, well it couldn’t look any less typical.

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My 7-year-old son has an obsession with things that are similar. Blocks, cotton balls Q-tips, marshmallows, spoons — basically any group of objects that are the same. He likes to take these objects and pour them from one bowl into another. At any given time, if you walk into our home, you will more than likely see him with two bowls and whatever random objects he’s selected for the moment. He’s had this fascination for as long as I can remember. I would be lying to you if I told you it didn’t bother me, because it does — or rather it used to, a lot

We’ve spent a lot of time in therapy over the past few years making attempts to try and get him to engage it typical toys like trucks, games, action figures. Every now and again, he’ll show an interest in something typical, but it’s rare. For the parent of a child with autism it can, at times, be hard to determine the difference between trying to teach them to try new things and attempting to put a square peg into a round hole.

The truth is, in the past when we’ve made these therapeutic attempts to try and get him to like typical toys, there’s been this tiny little tinge in my belly that says, “You’re trying to put a square peg into a round hole.” I remember reading a quote (I forget who said it) that essentially said, “The problem with pounding a square peg into a round hole is that you’re destroying the peg in the process.” That was a statement that had a pretty profound affect on me. That quote forced me to look at why this mattered so much to me. This entire time, had I been hoping to change my square peg into a round one? Before my son was born, I’d always assumed he’d be a round peg.  Everyone gets a round one, don’t they? I didn’t know anyone with a square one. I mean sure, I’d heard of square pegs, but square pegs are what happen to other people, right?

Well, as it turns out, I didn’t get a round peg. I got a square one. The day I found out I had a square peg, I was shocked and, truth be told, scared… damn scared. There was never a question about whether or not I’d be able to love him; I loved him the second I laid eyes on him. I was scared about whether or not that love would be enough. Could I be enough? Would I be able to give him every thing he needs? Could I embrace his sharp edges? Would I be able to reach deep into his corners? Along this journey we call autism, I’ve learned so many lessons, and one of the more important ones is this: to try and somehow force him to be round was a failure on my part to celebrate his square. 

photo.PNG-5 We no longer try to force typical toys in therapeutic sessions. Instead, sometimes I’ll buy him a new toy and if likes it, great! If he doesn’t, I’m not going to force it. Period. So that brings me to Christmas in our house. Finding presents for my little guy isn’t always easy. I spend a lot of time in the crafts store finding some things I think he’d like. And the upside to this autism-quirky-square peg of his is that I’m not in the middle of the toy section challenging another parent to a dual over the latest and greatest toy that all the round kids want. That’s what we in the biz like to call “winning.”  No, most likely you’ll find me alone somewhere in the crafts section stocking up on Popsicle sticks, soft craft poms or foam shapes. As I’m shopping for my special little square Christmas, I find myself thinking, “Maybe Christmas doesn’t come from a store, maybe Christmas perhaps means a little bit more.” (Who doesn’t love a good Dr. Seuss quote, am I right?) Christmas is a time for celebration! And in our case it means celebrating the gifts you receive, even if they’re not quite what you expected. Some of life’s greatest gifts are the ones you never saw coming. Celebrate your square.

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To the Stranger Who Gave Me 'the Look' When My Son Had a Public Meltdown

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I got a look today from a woman as we were leaving the grocery store, but it wasn’t the usual look. It was a pinched smile, raised brow and sympathetic gaze of someone who, if nothing else, “got” that my boy was miserable.

I was alternating hips so his headphone-wearing self wouldn’t give me a black eye, walking full blast toward the parking lot.

And she got it.

She got that he wasn’t wailing and screaming at the top of his lungs through the aisles because he thought he could manipulate me. He wasn’t thrashing because he thought he could win. He wasn’t crying and snotting and choking because he needed a stronger momma or a Bible-thumping on his ass.

He was in a full-on meltdown and long, long past rationalizing a way out of his torment.

I didn’t know her. I don’t know that I would recognize her again if I saw her. I have only a vague memory of light hair pulled back tightly from her face. Or maybe it was brown and just highlighted. I don’t know.

But I saw her.

And I was grateful.

There are lots and lots and lots of blogs and articles online complaining about the rudeness of other people when autism affects their day unexpectedly. I’ve had a few of those incidents myself but only a few.

The rest can usually be categorized as either blank-stared shock or intentional, awkward avoidance. A small percentage — usually someone of the more, ahem, grandmotherly persona, occasionally attempt to cajole him into distraction, which doesn’t work and in fact usually makes the situation worse, but is actually very thoughtful.

The rarest of the rare though, the golden response, the creme de la creme of acknowledgment… is sympathy.

Not sympathy for my child with autism, but sympathy for he’s-upset-and-his-momma-is-sad-that-he’s-upset.

It might come from a place of experience or empathy or just flat out kindness. I don’t know. And I don’t know because it is so rare.

It’s a lonely feeling, having a child you love fall apart in front of you when you know the only thing you can do to make it better is push through or leave. It’s isolating. I can handle it like a badass, don’t get me wrong. I can carry that 45-pound, writhing 5-year-old superhero under my arm like a football all the way through a super Wal-Mart and out through the parking lot like I carry the mail. I can stay calm and keep my head up, my keys ready, his shoes on and still make eye contact with anyone in my way. There’s no defensive lineman that can block a Spectrum Mom.

I can usually even find my car in the lot the first row I walk down, too. This is part of my natural awesomeness — don’t be intimidated.

But no matter how well I can manage grocery shopping during a nuclear meltdown, I still feel the social isolation of it.

Deeply.

So, Ms. Eye Contact, I just wanna say thank you. Thank you for holding my gaze long enough for me to smile back. Thank you for breaking me out of the zone and spending two seconds of your day to acknowledge me.

Thanks for seeing us.

Love,

Spectrum Mom

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This post originally appeared on Letters From a Spectrum Mom.

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