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.

marching band

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.

photo 1 (1) 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

young boy wearing pajamas

This post originally appeared on Letters From a Spectrum Mom.

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Why I'm Thankful for the Special Needs Community

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I’m thankful for the special needs community…

For the teachers, therapists, staff, and paraprofessional extraordinaire, “Mrs.Z,” who have all cared for, assisted, taught, reassured, laughed with (not at) and hugged my big boy for the last four years. Ethan’s accomplishments couldn’t have come without the nurturing experiences we’ve had at our school. Every year has been better than the last, because as he keeps growing and changing, his team keeps finding ways to work with him, encourage him and meet his needs.

For the two most amazing school bus drivers ever, taking the time to forge a bond and build a relationship with my often quiet, reserved, child. Thank you for keeping him safe on the bus ride to school, for always making him comfortable and for always trying.

mother smiling with two children outside

For the counselors and staff of Camp Sunrise, (specifically Meghan, Tara, Alex, Alec, Jorian, Liam and Anna) for giving my son the same opportunities available to typical kids… and for allowing siblings without disabilities to register. Both kids get to share the same fun and strengthen their sibling bond for seven weeks each summer.

For the many local and national autism organizations that have partnered with businesses and entertainment venues to provide training and/or sensory sensitive events for families to enjoy. Whether it’s a sensory friendly movie, a speed pass at an amusement park, special seating at a MLB game, specially-trained hair stylists, surfing and swim instructors, or aware wait staff or sales associates, your accommodations are incredibly appreciated by our family.

For the state of Connecticut’s DEP, from creating Camp Harkness (campground specifically for families with disabilities). Given my children’s interest-turned-obsession with tent camping, it was wonderful to discover Camp Harkness. Even with my aging eyesight, I can keep an eye on the kids, regardless of where they are in the beach-playscape-tent site triangle. It’s especially nice that when they leave the beach to go on the playscape, I can remain there to enjoy a good book. It’s also nice that when Ethan wants to swim at 7 a.m., I can easily accompany him to the shore with coffee in hand.

And, lastly, for all the special needs bloggers, websites, Facebook pages, mailing lists and online communities, which often print the same conversations I’m having with myself in my head. For once again proving I’m not alone, my kids are supported and that there is a great big world out there for us.

And that world  is wonderful.

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To the Lady at the Grocery Store Who Let My Son Tap Her Shoulder

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“Good Ways to Get People’s Attention” is one of the social stories my son’s behavioral therapist has used to improve his social skills. Because words don’t come easily to Alex, he may resort to inappropriate behaviors, such as suddenly grabbing someone’s arm to get that person’s attention. Instead, we needed to teach him socially appropriate ways to interact, especially since his tall six-foot stature could make him appear threatening to those who don’t know him. Not only does he read the story aloud repeatedly, but he also practices the skills detailed in the story so he knows how to act around other people. Specifically, the social story tells him that he can wave, raise his hand, shake hands, give a high five, or say, “Hi” or “Excuse me.” After repeating this exercise many times, Alex has made great progress; we’ve seen him do what he’s been taught, tapping my shoulder when we’re in the car, raising his hand during a meeting with his team of support staff and offering a high five to his therapists when they come to see him.

Recently, as we were shopping at the grocery store for Thanksgiving dinner items, Alex put these skills to good use and was rewarded for his efforts. After collecting our list of groceries, we headed for the self-check-out line and were greeted warmly by the store clerk who was supervising the registers. Apparently, Alex was impressed with her friendliness because he suddenly left our cart of groceries that he’d pushed through the store, walked over to her, smiled and tapped her gently on the shoulder, just as he had been taught in the social story he knows by heart. However, he didn’t know what to say to her once he had her attention, so he just smiled.

Even though he’d done nothing wrong, my husband, Ed, and I immediately sprang into action, not knowing how she might react to his gesture and not wanting him to bother her. Ed apologized and led Alex back to the grocery cart, and I noticed the clerk following them. I asked Alex, “Did you want to shake her hand?” He lifted his left hand (as he always does, offering the wrong hand for a handshake), but she took his right hand in hers, gave him a nice handshake, which made him smile and seemed to please her.

Then Ed, still trying to smooth over a situation that could have been awkward, told Alex the next time, he could just say hello instead. The kind woman then put her arm around Alex’s shoulder and said sweetly to him, as though they were old friends, “That’s OK, anytime you see me, you can tap my arm. You’re so precious.” What could have been an uncomfortable incident became a pleasant one because she reacted so kindly, understanding that Alex intended no harm; he just wanted to interact with her. 

Before we left, I thanked her for being so kind to Alex, but she assured us that it was her pleasure, wished us a Happy Thanksgiving and made a special point to say goodbye to Alex, who was still smiling. As we took the groceries to the car, I felt teary that a stranger could be so kind to my son and make him so happy. Although I suspect she recognized Alex has autism, she responded with warmth and kindness instead of discomfort and avoidance. I hope she was as blessed by this brief encounter as we were.

As we celebrate Thanksgiving this week, I’m thankful for the many blessings in our life: our faith, family and friends that sustain and bless us, the healing we’ve seen in Alex, and for the kindness of strangers who take the time to interact with Alex.

To the pretty lady at the grocery store with the warm smile and kind heart, thank you for making Alex’s day. You should know that Alex has an innate sense for people who are especially nice; he’s drawn to them. You must be one of those people because he felt the need to reach out to you and get your attention. By responding to him with genuine affection, you’ve gained a new friend. That night after you called him “Precious” and told him he could tap you on the shoulder whenever he saw you, he asked what your name was. Overwhelmed by my fear of your reaction to him as well as by your sweetness to him, I didn’t think to ask your name. However, we hope to see you again, and you should know that a young man with autism now includes you in his prayers as his “new friend” whom he wants God to bless. Indeed, I pray that you will be blessed for the kindness you have shown. While you dismissed it as “no problem,” to us it meant so much, and we are thankful.

unnamed (40)

This post originally appeared on One Mom’s Autism Notes.

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