Upside Downs

Don’t let Joel’s grumpy face fool you, he was just confused and sleepy from his car nap. (It was an hour long drive)

A couple of weeks ago we went to the Magical Dance Party hosted by Upside Downs.  It was a great time and I’ve been wanting to share about it and I don’t know what took me so long but here it is!

Upside Downs is an amazing organization that I recently found out about. I don’t remember how I came across them, but most likely it was through work.  I have fallen in love with them. What honestly drew me to them was that I saw that my all time favorite celebrity, John Tucker from Born This Way was going to be at the party. I️ immediately got too excited…

So, I️ want to brag about this organization for a bit. Upside Downs Mission Statement is:

“Upside Downs, Inc. is a nonprofit, tax-exempt 501(c)(3) organization committed to helping the Down syndrome community through new parent support, recreational activities, raising awareness and advocating for a brighter future. We are a local affiliate of the National Down Syndrome Society and the National Down Syndrome Congress. Our goal is to promote the “Upside” and positive aspects of Down syndrome and further our belief that Anything is possible with Down syndrome.”

They are doing all kinds of things for people with Down syndrome and they’ve won my heart. They provide new families with gift baskets and kind words. They do amazing free events like one we went to, not only do they do that but at this party, every single guest with Down syndrome wins a prize. (Joel won tickets to see the Saints. It was his very first game) they also do a lot with self advocates. They are super great and I️ encourage families to look them up!

Joel had such a fun night. He literally danced as much as he wanted and was super sweaty. His favorite person there that night was Elsa! Here’s what Joel’s night looked like:

 

 

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See! Joel had fun! It was a great night, thanks Upside Downs😊

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Friendships II

So, last week I wrote a bad example of friendship and I thought I’d highlight some good ones. 🙂

I really appreciate my friends who consider Joel a friend. Even people who I do not know that consider him a friend. There have been many times where we run into people Joel knows in a public setting like the mall or grocery store. Joel usually tries to act cool and will barely lift his hand as he waves and says ‘hey’ in a most nonchalant voice.

My favorite thing is to see how he reacts when my friends come over. He greets them with a happy smile and will not leave us alone. He wants to be a part of the conversation. He’s super talkative even though most of what he says is not understandable. It can be a little annoying and I would like to thank everyone for being super cool about it. Thanks for your patience and understanding! It makes me feel proud of my friend my when they pretend to know what he’s saying and try to hold the conversation.

It’s much better in my eyes than when some people just start laughing. I’m sure they aren’t laughing at him and they just don’t know what to do. But its just weird when people laugh in the middle of him trying to make a conversation. He notices, he knows what he said wasn’t a joke. I’ve seen it time and time again. Joel is trying to talk to someone and they laugh just because they don’t know what he said. He pauses and looks confused and says, “oh, okay.”  What’s worse is when people babble back… eww. I won’t get in to it.

So shoutout to those who make him feel included and heard! I can’t say this enough!!!!

So here’s an example:

So I’m going to write about my boyfriend, I was trying not to mention him because it’ll sound biased but it’s the best example I can think of…I’ll use a real name for once. Huy.

So Huy has always been extremely great with Joel. I’m sure Joel loves him more than me.. because he says so all the time!! Huy has proven to be a friend to Joel many different ways. Joel face times him when he’s upset and texts him constantly. When I can’t get joel to listen, I’ll call Huy and he is always able to get Joel to behave. When we’re out and about I can never get Joel to hold my hand but he’ll gladly hold Huy’s hand. When Joel needs someone to take him to the restroom, we can always count on Huy to take him. Huy is always there for him. No questions asked. No protests. He never looks for a way out and he doesn’t look for anything in return. I’m sure he can get annoyed with all of Joel’s texts and Snapchats, but Huy’s is always a good sport. It’s been over 4 years and Huy is still as great with Joel as when he first met him.

Thanks for supporting him. Thanks for hyping him up when he’s dancing. Thanks for loving him. Thanks caring for him. Thanks for giving advice. Thanks for being Joel’s best friend!

 

Friendships

The story behind this picture is a good one. My sister was taking my senior pictures when I graduated college and Joel interrupted to pose. I’ll post the rest of those pictures at the bottom of this post.

Joel makes friends very easily, especially if your a guy around his age. I’m so appreciative of everyone who is kind and accepts his friendship. Thank you to those who:

  • listen to him even though you can’t understand what he is saying
  • go along with never ending games of poking and pretending it wasn’t him
  • hold his hand
  • Let him play on their phone
  • Let him take pictures for Snapchat and Instagram
  • Texting or Snapchatting/DMing him back even though he sends jibberish

You’re the best. But like always there’s always people who are just are not too nice. There was this one time when we went to a restaurant where this person, we’ll call Mr.Krabs, worked. Mr.Krabs is a family friendish, and goes to our church. He’s close to Joel’s age and like any normal person, Joel sees this person as a peer and always gets excited when he sees him because Joel sees this person as a friend. To be fair, Mr. Krabs usually will be nice and greet him in a playful way. But Mr.Krabs, couldn’t keep pretending to be nice to Joel all the time. (Mr. Krabs and I argued a lot about little things in a friendshipy kinda way but we remained amicable, but somethings I can’t easily look past. And somethings includes how you treat my brother.) 

So, we go to the restaurant and Joel immediately gets excited when he sees Mr.Krabs. This means Joel is loud and laughing a lot. Joel tries to be playful and is not taking the hints that Mr.Krabs is not in the mood. (Sometimes I can see that Joel is being annoying and I try calm him down, but if your gonna be rude, I’ll let him annoy you.)  Mr. Krabs kept giving me looks as if he wanted me to do something. At first I was trying calm Joel down but I can’t control him. The looks were okay I guess because they were pointed at me and not Joel. But as soon as his annoyed face and tone of his voice was directed at Joel, I had a problem. Strike 1.

The restaurant is small and it wasn’t very busy, maybe Mr. Krabs was having a bad day. I know I can be mean to Joel sometimes, but all Mr. Krabs had to do was be nice for 10 minutes. We weren’t in there very long at all. Joel was eating his order very happily and making gestures with his hands. Mr. Krabs grabbed his hands and placed them on the counter and said “shhhhhh.” Strike 2. Joel is thinking this is a funny game and he doesn’t see that Mr. Krabs isn’t being nice. I let it go at first, because I didn’t want to argue with him. Then came strike 3. He had had enough, looked at Joel and said, “Oh My God!” Then turned to me and said, “Can’t you control your brother.” So I yelled back kinda. “No, I can’t. You know he has down syndrome and he doesn’t get that he’s annoying you. He is just trying to play with you because he sees you as a friend.” Mr. Krabs then said, “Well, make him chill out.” So we just left. There was no point to continue arguing.

I can’t make everyone patient and kind to Joel but I wish I could. It always catches me off guard when I come across people who are not kind about disabilities. I always expect people to be patient and nice, and that is not always going to happen.

Joel’s reaction to this situation is very sweet. He never saw the rudeness and continues to always see this person as a friend and is always excited to see him. Someone asked me once who I admire the most in my life and my answer was Joel. Then they asked why and I dreaded answering because I hate getting emotional. My answer is because he always sees the good in people. He is never prejudice. He doesn’t hold grudges. He will always see you as a friend first. You can be mean to him and he may not notice and if he does, he’ll forgive you within minutes. I love him dearly, and I’m so thankful for those of you who are kind to him and keep his friendship alive.