This Fun Version of ‘Uptown Funk’ Has an Important Twist

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Hernando High School in Desoto County, Mississippi, released the video below last week. In it, members of the high school’s Interact Club and the CFA Leadership Academy perform a goofy lip dub to the song “Uptown Funk” by Mark Ronson, featuring Bruno Mars.

The lip dub, called “Uptown Blue” aims at raising awareness for autism.

Check out the video below, and get your funk on for autism awareness:

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When My Son Reminded Me to ‘Stop and Smell the Flowers’

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This past summer I took my boys out for an evening walk around the block. My toddler was hyper, and I was hoping to let him run off some energy before bed. What I’d intended to be a quick 10-minute loop turned into a 45-minute extravaganza, and we were just half way home. My 4-year-old was stopping every 5 to 10 feet to smell every plant we passed. I hate to admit it, but I was getting frustrated. The child would not skip a single flower or plant. Every one had to be smelled, assessed and discussed. He talked about the colors, sizes and smells. Blossoms were compared and analyzed. He even noted which ones he’d seen before and which ones were pretty. It was cute at first. But halfway around the block, it turned into botany hell. “Dude, let’s go. I’m serious. We gotta get home,” I chided him.

Finally he stopped and said in a voice that sounded more like that of a 40-year-old. “Mom. What’s the hurry? Flowers are beautiful. You have not smelled one. You need to stop and smell the flowers.”

He pointed at some sort of bush with little purple flowers all over it. I stared at him, little arm stretched out and pointing at the bush. He was dead serious, and I couldn’t resist the instinct to laugh. “Did you just tell me to stop and smell the roses!?” I asked, amazed at how quickly he can diffuse me. He looked at the bush, then back at me. With totally sincerity and seriousness and sounding oddly grown up, he said, “No, Mom. I don’t think those are roses. I don’t want you to smell roses, I want you to smell those.” I stood there just smiling at him. He looked at me sternly and just pointed to the purple flowers. “So… you want me to stop and smell the flowers?” I asked. He just nodded. “Fine,” I said, not sure if I should be going along with the demands of a 4-year-old. I walked over to the flowers, and he smiled. When I bent over to smell them, I found him next to me doing the same thing. “There. I smelled them. Now can we go home?” I said to him. But he wasn’t listening. “Aren’t they pretty, Mom?” He looked at me, waiting for an answer. “Yes. They are lovely. But we have to go home. We will come back and smell them tomorrow if you want. OK?” He looked down at the ground, and his lip quivered like he was going to cry.

I was so frustrated and just wanted to go home. His newfound obsession with flowers was unexpected and left me at a loss for how to handle the situation. “But Mom,” he said with tears welling up on his eyes, “Tomorrow my legs might hurt.” I sighed. Now I understood. “You don’t hurt now?” I asked. He stared at the ground and shook his head no. I looked in the stroller and found his little brother had been too bored by botany to stay awake. So, with no baby to rush home and put to bed, I took my little boy with one hand and the stroller with the other. Together we stopped to smell every flower all the way home.

It was unexpectedly nice. I could not remember the last time I’d stopped and smelled a flower. The warm summer air and the orange of the sun setting in the sky mixed with the aroma of flowers was surprisingly tranquil. Once I surrendered myself to the experience I found, I was really enjoying myself. As we walked up our driveway, I kissed my boy on the cheek and gave him a hug. “Thanks for making me stop and smell the flowers,” I said to him. “You’re welcome,” he said, smiling. His nose was yellow and speckled with pollen from all the sniffing, and it made me laugh. By morning, I would come to be even more thankful I agreed to stop and smell the flowers. As he predicted, the next day would not be a good one. Only it wasn’t his legs like he thought. It was the day he started vomiting blood.

I’m both happy and saddened by how my 4-year-old has the foresight and wisdom to stop and smell the flowers. The fact that his life circumstance has taught him a total appreciation for enjoying the here and the now leaves me feeling conflicted. So often he will make me stop to watch a tree blow in the wind or a sparrow play in a puddle. Once, we watched ants work together to get a leaf in their nest for 20 minutes. “Now that’s teamwork!” he’d exclaimed. He sees the marvel in it all. He knows how to enjoy today because he knows tomorrow might not be a good one. He teaches me every day to enjoy the little things and points out the wonder and beauty in the mundane. So often we associate youth with ignorance, but I’ve come to think we’re wrong. Our little people have amazing wisdom and insight. Big philosophers in little bodies. They’re untainted by stress and societal pressure. They have no pretense and live in a world with pure intentions. There’s so much to learn from this mindset. It’s one I wish I had as an adult.

But it also makes me sad to know that someday his youthful wisdom will be lost to the cruelness of adolescence. I hope he can hang onto some of it. I hope I can help him do it. And when the day comes when he’s a parent feeling overwhelmed and struggling and his precious child tells him to stop and smell the flowers, I really hope he listens.

This post originally appeared on Raising Dystonia.

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Know One Thing, Spina Bifida

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Dear spina bifida,

We got along pretty well at first. I could deal with the fact that I couldn’t do certain things, as long as I had some control over my body and knew what to expect from day to day.

Now, I feel as if I’m in a constant battle every single day. The pain comes and goes, and with it, my energy level ebbs and flows as well. There’s never a day without some kind of pain, and taking a pill every time some random part of me hurts is just getting old.

I miss being able to walk and walk and walk. I miss independence. I miss feeling confident getting on a bus and going wherever I want whenever I want. I appreciate the freedom having my wheelchair allows me once I’m actually out of the house, but I feel as if I’m inconveniencing everyone in my life by needing it.

I miss being able to go out for a meal without worrying whether my bladder or my bowels are going to rebel on me before I’m finished eating. My social life is all online nowadays. At least if I have to clean up, no one will see my embarrassment.

Know one thing, spina bifida. You have not won. I do not surrender. I will find a way to overcome these obstacles. I will find a way to live my life again. I will regain control over my body, because I am in charge. Not you. Never you. Even if these things never change, I will get my life back. I will get me back.

Middle finger primed,

Lana

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For all of March, 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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When Someone Suggests Your Child Has Autism

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It’s been suggested to you — maybe by a well-meaning neighbor, teacher or family friend — that your child may have autism.

You don’t know anything about autism. You can remember seeing “Rain Man” once. You can remember seeing a documentary with a person with autism. Your child is not like that.

No, your friend or neighbor or teacher is definitely mistaken, you decide, shaking your head.

Curiosity gets the better of you, and you hit up Google. What you see simultaneously devastates and elates you. This is your child they’re taking about! Everything fits. The lining up thing he does?

Autism.

The way he likes to go up to every single front door and touch it twice on the way to school? The difficulty expressing himself and the desperate need for routine? Knowing every single car sign there is? Autism.

You’re referred to the educational psychologist. You go to your doctor and ask for a referral to your local child developmental center and sit in the waiting room while your son lines up cars on the floor. You go in with a long list of traits and anxiously watch as the pediatrician attempts to get your child to stack little colored wooden blocks in a certain pattern. Your child does the first two, then gets frustrated and sends them scattering onto the floor. He screams in anger.

The doctor recommends a hearing a test, and you go, knowing full well the results will be negative. They are.

That child can hear a cookie packet being opened two rooms away; you knew there was nothing wrong there.

You go online and buy every book there is. You look into every therapy and wonder if you’re doing enough. Too much? You discover sensory play and have a great time playing with pasta, rice and corn flour for tactile feedback and visual stimulation –terms you hadn’t really heard before now enrich your child’s days.

The day you’ve been waited over a year for has come. You knew they would say your son has autism, that he has autism spectrum disorder, to be precise. 

You walk out feeling relief yet numbness, a sense of triumph towards anyone who said you were wrong and were worrying about nothing.

The next morning you wake up with a sense of wonderment inside, you look at your child and the sentence, “He’s autistic, my son has autism,” runs repeatedly through your head, perforating every thought.

The next few days it’s easier.

You realize you’re still adjusting, and your child hasn’t changed. He’s still the same adorable little boy, grinning with his walking shoes in hand, waiting to take you on a journey of acceptance and enlightenment.

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My Son Is Not ‘Damaged Goods’

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A couple years after my son, TJ, was diagnosed with autism, I wanted to give back to the people who had helped me so much to get through the difficult time of diagnosis. So I became a support parent through a local organization. As a support parent, I was matched up with a newly diagnosed family. I spoke with them on the phone about all these new terms being thrown at them, what the different therapies entailed and our successes and struggles.

I loved it. It wasn’t always easy, and although I sometimes felt exhausted by my own family’s journey, I thought it was important to help someone else dealing with the same thing.

Finally I was given a family in my own town to support. Our kids went to the same school. I saw the mom every day at school pick up. It was so nice to be able to casually chat in person about what we both were dealing with as we learned more and more about autism.

This mom who I supported had a new baby — a beautiful little girl. When she finally brought her baby to the school for pick up, I said to the mom that her baby looked exactly like her big brother. He was a beautiful boy with autism who was doing so, so well.

This mom looked directly at me and said, “Don’t say that. He’s damaged goods.”

My stomach dropped. I felt sick. I suddenly found it difficult to stand next to this woman.

So I went to the bench and sat down, trying to digest what I’d just heard.

There was no indication that this woman had been having a particularly bad day or that her son was, either.  We’d been chatting. We’d been smiling. We’d been laughing.

All that ended when I said her baby resembled her big brother.

And then I felt the heat of a strong anger I’d never felt before. If she thinks her son is “damaged goods,” then she thinks my son with autism is too.

And that could not be further from the truth.

My son and hers are both perfect the way they are. We’re helping them understand how society works around them and how they can grow up to be contributing members.

They’re not burdens, and they’re not damaged goods. Never have been, never will be.

I called our local organization and told them I was not going to be a support parent for this family anymore.  Maybe I gave up where I could have made a difference, but I couldn’t bring myself to talk to this woman again.

I think we’re from different planets. Because when I look at her son and mine, I see beautiful smiles and potential for a happy, fulfilling life.

I see no damage. None at all.

Eventually as time went on, I stopped being a support parent all together. I wanted to devote all my energy and efforts into my own family and our daily happenings.

I often wonder if I should have stuck it out with this family — that maybe I could have helped the situation somehow. But I also realized this wasn’t my job. My job was to take care of my own family.

And so I have. And I’ve loved every day of it. Even the tough days. Because none of these kiddos are damaged or need to be fixed. They just need to be taught in a way they can learn. This is different for everyone, autism or not.

These kids of ours are a treasure and a gift. And there is no place in my world for anyone who thinks otherwise.

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5 Life Lessons I’ve Learned From My Daughter’s Rare Disease

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Dear Mitochondrial Disease,

When you came into my life eight years ago, I started preparing to go to war.

I wanted you out of my daughter’s body, and I was willing to give up everything to do it. I went to the specialist, walked away from my career, relocated to another state and cut those who were too weak for battle out of my life. I gave it my all, but you are still winning. Today I know I will not win this war, but I will learn. You have become my teacher. I get new lessons every day, but these are some of the things you have taught me.

1. Live life to the fullest. This is a lesson that I already knew, but like most people, I forgot it once we settle down in the suburbs. Our days became full of scheduled activities for the family. We gave up our sense of adventure and the willingness to take risks. How did I get from being the girl who went skinny-dipping in a Costa Rican rainforest to the mom with a color-coded calendar?

You came along shook my world and made me realize life is short and we have to make good memories together. One day you will leave me with a heartache that nothing will heal, until than, we are going to make memories that you cannot steal.

2. Love without expecting anything in return. I tell my daughter I love her and she cannot say those words back to me. I will have to care for her for the rest of her life, without ever hearing her say “Thank you.” Yet I love every minute of being with her, and it’s an honor to take care of her. I have learned to love without any conditions, and I care for her without any expectations.

3. Be independent. I had to become physically strong when I realized I couldn’t depend on anyone else to lift and carry my daughter for me. I am her caregiver and I must stay strong because you have taken away my daughter’s strength.

Thinking about the strength she has lost gives me the drive I need to continue getting stronger. Knowing she may never walk keeps pushing the two of us to run faster. Oh, you thought you took away her ability to run? Look in her room, and you will see all her race bibs. My legs, her wheels and our team have made her into a strong runner.

4. Be present. Caring for Rebecca requires me to stay in the present. There is no cure, and I don’t know if she will be here past the present moment. This is a skill that has carried over to other areas of my life. When I am eating, I enjoy every bite. When someone is talking to me, I listen to every word. When I am outdoors, I notice the details in nature. When I hug, I put warm thoughts and love into the hug. When I am with you, I am with you.

5. Be flexible. Getting stronger emotionally and physically requires learning to be flexible. When I am at the breaking point, I tell myself to bend so I don’t break. Yoga has become my time to bend physically. Prayer has become my time to surrender spiritually. Through yoga and prayer I have learned to become comfortable with the uncertainty of having to live with you.

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I cannot see you as a blessing, but I can see you as a lesson.

For all of March, 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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