Up-Syndrome: Why We Can Learn More From People With Special Needs Than They Can Learn From Us

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I was about 11 the first time I truly realized what a blessing it is to know someone with special needs.

I will never forget it. I was sitting on my grandparents’ front porch with my grandmother Mimi and a few of my older cousins, one of whom was Andrew. Andrew is a year older than me, and was born with both severe Downs Syndrome and autism. Because of this, he can’t exactly function like a typical 19-year-old; he can’t really talk or take care of himself, so he is always making loud noises and aimlessly moving his arms and legs. I grew up with him, and we played together when we were little, and I used to grab his hand and try to teach him how to dance. He was always smiling (and still is.) He loved hugs (and still does.) And because I had grown up with him, I guess I had never really noticed anything different about him. He wasn’t “Downs Syndrome,” and he wasn’t “autism.” He was just my big cousin, Andrew. And I loved him.

On my grandparent’s porch that day, my cousins and Mimi and I were all talking, and Andrew was making his noises – communicating in his own way. But the little girl who lived next door came running over and stood at the edge of her yard, staring. I’m not sure how old she was, but she was old enough to know better. She yelled for her little brother to come too, and he came and stood next to her, and they just stared at Andrew. And they started laughing. My blood was boiling, and I could tell it was the same for my cousins sitting with me. I can’t remember a time before then that I was so angry. But I remember Mimi saying, “Is there something wrong?” And the little girl very quickly said back, “Yeah. Something’s wrong with him.”

I wanted to get out of my wicker chair and march over to that little girl, to yell in her face, to tell her no, there’s something wrong with you. But as my mind raced, I so vividly remember Mimi very calmly standing up, walking over to the little girl, and saying, “You know what? There is nothing wrong with him. God made him, and God made you, and God made me. And God made each of us perfect. There is nothing wrong with any of us.”

That memory is permanently engraved in my brain. That was the first time I realized how special it is to know someone with special needs. The second time was when I met Miles Peck.

I met Miles Peck about 5 years ago; he was 2 years old. Miles Peck (pictured above) and his family are quite possibly one of the biggest blessings in my life. Miles likes Mickey Mouse Clubhouse, playing with (small) dogs, Cheez-Its, and people. He also has an extra chromosome – Miles Peck has Downs Syndrome. And Miles Peck is a blessing in the life of every person he meets. The love that surrounds Miles Peck and his family is something I will never be able to explain; they just radiate joy. If you are lucky enough to know the Peck family, I know you agree. 

So I guess Andrew and Miles combined are what created such a special place in my heart for people with special needs. Ever since the beginning of high school, I have continuously made the conscious decision to spend as much time as possible with people with special needs. I can’t explain it – I am just happiest when I’m with them. And perhaps it’s for this reason: 

I firmly believe that I learn more from the people I know with special needs than they could ever learn from me.

So often, people with special needs are looked down upon. It bothers me so much when people look at them as if they are incompetent or crazy. Most of the time, I feel like I am a whole lot crazier than the people I know with special needs. There’s this thought that we need to “teach” them how to live more like “normal” people. But I don’t think this could be further from the truth. In fact, I think some of them live more “normally” than we do. I think they could teach us a few things.  They’ve certainly taught me a lot. So, I’d like to share some of it with you right now.

*Disclaimer: These are all general statements about the people I know and have met who have special needs. I understand these cannot be made about all people with special needs, because every person is a unique and individual human being. That being said, those I know all share the qualities I talk about below! 🙂

  1. Say what you mean and mean what you say. Most of the people I know with special needs don’t have much of a filter. Yes, at times this can be a bad thing. A sweet friend named Kristen (“Kay-Kay” to those who know her) worked in the cafeteria at my grade school, and every day, she used to come up to me and say, “You look tired. Are you tired?” But, you’ll also get some of the sweetest compliments you could ever imagine from people with special needs. Kay-Kay also used to tell people on a daily basis how pretty, or smart, or funny they were. It was a confidence booster for sure, and I always looked forward to seeing her in the cafeteria, even if she was going to tell me how tired I looked. Because here’s the point: when she says something, you just know she means it. And there’s something so refreshing about authenticity.
  2. Let your emotions show. We live in a culture where vulnerability is almost looked down upon. I mean, God forbid you feel something!! It’s considered a weakness, a fault, to let anyone know what/how you’re feeling. But ladies and gentlemen, God created emotions for a reason! They’re not meant to be stifled! People with special needs know this. I’ll admit, once again, this can be a bad thing – when they’re mad, they’re really really mad, and when they’re sad, it’s heartbreaking. I’ve seen Miles Peck pound his fists against the ground when we have to leave the playground, and I’ve seen his lip quiver and his eyes start to water when he skins his knee. But last week, I turned on his favorite TV show for him, and he had been a little grumpy, so in an effort to cheer him up I started singing the theme song (if you do as much babysitting as I do, you know every word to every theme song – Doc McStuffins is my jam)… and I started dancing and high-kicking like a fool around the Pecks’ living room. I have never seen someone laugh harder than Miles Peck did right then. Don’t be afraid to feel things, friends. Feel anger, or sadness, or happiness, or excitement. Feel them, and feel them deeply.
  3. Stop overthinking and start living in the now. I don’t know about you, dear reader, but I overthink everything. And by everything, I mean, “Oh my gosh, my phone is about to die… What if it dies and then my car breaks down? What if there aren’t any other cars driving by and I’m stranded? What if a big white van comes by and kidnaps me and then drops me in the woods somewhere and comes back and steals my precious Jeep? Or what if I starve to death standing beside my car and flailing my arms for help on the side of Highway 70? WHAT IF I DIE TONIGHT?! WHAT IF THIS IS HOW IT ENDS?!” (I’m ashamed to say these thoughts have actually gone through my head.) I digress, but my point is, because people with special needs don’t always have the capacity to overthink, they don’t. And how I envy them for this! I helped out at a Best Buddies Halloween party this past year (Best Buddies is an organization for people with special needs to get together and have fun), and I passed out candy at one of the booths. I have never seen so many people so excited about M&M’s and Sweet Tarts. Because they weren’t worried about whether or not their costumes fit right or what they were going to do next weekend. They were there, fully present, focused on their candy and their friends and the fact that they were happy. And this is something I will forever wish I was good at.
  4. It’s okay to need help. A lot of people with special needs can’t fully take care of themselves. This ranges from simply needing to be driven places to needing to be fed and pushed around in a wheelchair. It’s incredibly sad to see someone who is unable to take care of him or herself, but it’s also an important lesson: it’s okay to need other people. If there’s something you can’t do, or if there’s something you need help with, it’s okay to admit it. God gave us other people for a reason. We are all here for each other.
  5. Just be kind.  If you asked me to tell you the friendliest people I know, I would immediately start naming off my friends who have special needs. I think it stems from the things I listed above – their tendency to not overthink, their authenticity, etc. But whatever the reason, they are some of the sweetest people you’ll ever meet. Last week I took Miles to Moe’s for dinner, and I swear he left having made 10 new friends. Because he just says “hi” to people, and people smile and say it back. In turn, I leave having made new friends too, because these tiny little acts of kindness – just a simple hello or a smile – bring people together.

This would be the longest blog post on all of WordPress if I took the time to write out everything I’ve learned from spending time with people with special needs, so this is just a simple list. I could tell you more about Andrew and Miles and Kay-Kay, and then I could go on to tell you about my other sweet friends, like Bryce and Anthony and Chris. And man do I wish I had the space to do so, because the lessons I’ve learned from them are just endless. And I’m continuing to learn more every day.

For this post, I have the absolute perfect song – it’s called “He Will Never Be” by LynnMarie, and it’s specifically about her son, who has special needs. It makes me cry every time, partly because Miles and his mom and sister make a few special appearances in the video. (First at 0:15!) (Watch below – if you haven’t watched any of the other videos I’ve shared before, WATCH THIS ONE!)

“He Will Never Be” by LynnMarie

I can’t even pick a favorite line of the song. It’s just so good and so true. It talks about the common misconceptions we have of people with special needs – all the things they will “never be,” like doctors or lawyers or anything the world deems successful. But then, LynnMarie goes on to point out the good side of this: her son will never be a pessimist, or prejudiced, or a list of other negative things. Like I said, I cry every time. Just listen to it.

There’s a show that aired on Lifetime a few months ago called “Born This Way” about people with Downs Syndrome. It’s my favorite TV show I’ve ever seen. But my favorite part of the entire show is something Steven, one of the stars, says in the first episode. Steven says, “I don’t like to call it Downs Syndrome. I like to call it Up-Syndrome, because, I like to stay up, and I like to bring people up, not down.”

Yes, I cried when he said that, okay? You don’t even have to ask. It’s just so true; every time I spend time with my friends who have special needs, I just feel so… Well, “up.” They bring joy and goodness to everyone they know. And where there is goodness, there is God – every time I look at Miles or Andrew or Kay-Kay or Bryce or Anthony or Chris, I am drawn closer to God. And that, my friends, is what it’s all about. Let’s follow their examples. Let’s stay “up.” And let’s start bringing people up, not down.

“As He passed by, He saw a man blind from birth. And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” (John 9:1-3)

God loves you so so much,

Caroline

 

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One thought on “Up-Syndrome: Why We Can Learn More From People With Special Needs Than They Can Learn From Us

  1. Andrew is happy to be your cousin Carolinel!! Love you so much and loved reading this thru my tears!! wow!!! You are precious!! Aunt Dawn

    Like

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