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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. ūüôā

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!

 

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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.

 

Equity

Here’s a random picture of Joel in Austin from some time ago… This post doesn’t have much to do with Joel but here it is. Last week I attended a conference in Austin for work. It was a great experience and I got to learn a lot about disability related matters and meet new people with great stories. I wanted to share a few things about my experience.

  1. Austin is such a disability friendly place: Austin is such a forward thinking city. and I loved it! One of the best things I saw was this sign. I rode the bus to the hotel we were staying at, and this was one of the first things you see when you hop on the bus. “Courtesy Matters. It’s The Law.”¬†atx¬†Something else I saw was ADA trails along parks and jogging trails. This made me so happy to see. These things do not affect me personally but it make me happy knowing its there. People with disabilities are often not thought about when parks are built. I used to not think of this, but after I started working in the disability community, I started to always pay attention to the accessibility of places I go to. I hate knowing some places are still inaccessible in 2017 for people with disabilities. These are just two examples that can I remember and they do not affect me or Joel but I’m glad they exist.
  2. Equity:¬†I have always known that race, economic status, disability, language, and culture play a huge role in the advantages and disadvantages of people. ¬†But it was refreshing and it’s always good to have a reminder. Seeing this again in the way it was presented gave me a bigger desire to do something. I’m not sure if I’m making a huge impact now but I want to. ¬†Here is a picture the presenter on this topic started her presentation off with. Most people say they want equality not thinking of what that actually means. Everyone would be treated the same regardless if that leads to the right results. Some people need more supports to succeed. I’m not sure if I’m explaining this clearly but I think this picture does a good job of showing what I mean.atx1.PNGI’ll probably add more to this later on, or not….

 

Joel When I Travel

Sometimes Joel is very affectionate.(:

Not to brag or anything, but Joel has always been very attached to me and has a hard time when I travel without him. I think he’s gotten better than in previous years.

The worst was two years ago when my sister and I left for a week long trip to Guatemala and my family dropped me off at the airport. My parents like to walk me in and see me off and they always bring Joel even though he gets very mad. Well that particular time he got physical and threw himself on the ground and and hit my parents. The last time I left the country, I had to leave without him noticing.

Although… Joel is very nosy and always following me around. I usually pack my things days in advance and he’ll see my bags and constantly ask where I’m going. What really breaks my heart is when he’ll get his own bag and pack too. Other times he gets it and will try to help me pack by bringing me random items.

Once I’m gone, he’ll send some mean emojis and after a day or so he’ll be okay and try facetiming multiple times. It’s so cute and it makes me miss him so much. When I call home when I’m away, my mom always that joel will stand in the middle of the stairs or in my room saying “emelas” which is his way of saying “gemelas” which is Spanish for twins. (In case you didn’t know I’m a twin.)

Right now I’m in Austin for a work trip and he didn’t realize I wasn’t home. He called me and asked me to bring me home ¬†some McDonald’s. After the first night he got it and started sending videos of himself, ya know… in case I forgot what he looks like.

Joel can be mean but he can also be so sweet and loving. I always say I want to leave Louisiana but I don’t think I can survive very long without him.

Camp Able

Here is a picture of Joel and his counselor, Jackson. I love seeing him swinging because he used to have such a hard time. He would always fall right off the swing but in the past 2 years or so he’s become a pro.

Last Wednesday Joel started a 5 day camp called Camp Able,and it was such a beautiful experience. I really really wish it lasted¬†longer. In previous posts I have mentioned my job but if you don’t know, I work at a nonprofit called Families Helping Families of Jefferson¬†in which I help connect families to resources and provide trainings and do some advocacy work and other stuff. Well one of the biggest things that I get calls about as summer approaches is summer camps. Many times children with disabilities get rejected or sent home from camp because they are not fully potty trained or because of their behavior. Now most of these camps advertise themselves as “special needs” camps or something similar. Soooo… how can a special needs camp reject children because of their special needs?!? Here is an excerpt from a local “special needs” camp ad:

The success of all recreation activities depends not only on good planning & instruction, but the conduct of participants. Appropriate behavior includes the ability to follow instructions and interact with others in a socially acceptable manner. Must be¬†mobility capable & able to attend to personal needs.”

Those words already rule out so many children with disabilities, it is so crazy to me that they put this out there. To me, this is basically saying only higher functioning kids are accepted. It is so unfair. I hate when a parent calls to ask me for a list of camps that are supposed to be for kids with disabilities and I hear the gratitude and excitement in their voice, only to have some of them call back saying their child has been rejected because of what I just mentioned. It is really so upsetting.

I say all of that to say this: Camp Able is awesome. ¬†Joel has gone to other camps that are great like Lions Camp, but I haven’t been able to go and see what’s like for myself. I written about how he acts when we go see him at games before, how he can be mean to us and it seems like he doesn’t want us there. Well, that’s how it is when we go to see him at Lion’s Camp for the closing ceremony. So we have decided not to go see him for that anymore and that was our only look into his experience at Lions Camp. He can’t really communicate what his experience is like to us but we know it’s good based on pictures and conversations with staff.

Camp Able was different. It was held close to home and My sister and I were able to volunteer some time with them. We couldn’t volunteer all we wanted but we did as much as we could. Anyway, we got to see it all and it was great. Joel was a little moody at times but over all he interacted great and had lots of fun. They accepted kids with mobility issues, behavior issues, and even children who were not fully potty trained. My sister’s camper was a girl who’s behavior was not the best and would hit her counselors. She was also not fully potty trained and my sister had to help her in the bathroom and clean her up after an accident. Guess what? She didn’t get sent home!

Camp Able was full of adventures to local spots like the aquarium, pool, and city park’s amusement park. Joel had plenty of fun on water slides and playing basketball. If you know Joel, you know his favorite things are dancing, water, and basketball. Although, weirdly enough he didn’t want to dance at all during camp. He did however chose to show off his basketball skills for the talent show, which I thought wa super cool and different. One of my favorite things about Camp Able was that they made room for Jesus!

Here are some pics:

 

 

 

 

 

Vlogging with Joel: Camp Able — Down With Joel’s YouTube

P.S I feel like this post was all over the place, hope you still enjoyed it.

Baby Talk

Side note about the picture: Joel is a huge who fan, here he is having the time of his life at comic con in NOLA.

Joel is almost 18 years old, and in many ways he acts his age. But of course, he is childlike in some ways, however this does not give anyone to talk to him like he’s a baby. It’s one of my greatest pet peeves. It’s so demeaning and it just makes me so angry.

Not too many people do it, but when I notice it I just can’t help but look at you in disgust. The sad part is, most people who do it are older family members of ours. This means I can’t really say anything to them without being disrespectful. ¬†I mean technically I can but it won’t pretty, and they won’t let me forget it. My family/culture is different from the average American family. I remember one time I told my mom and my aunt to stop saying “pobrecito” when referring to Joel. ¬†(Pobrecito= poor thing)¬†Now they bring it up all the time, my mom does so way more. When they catch themselves saying it they’ll look at me (sometimes in disgust and sometimes laughing) and say Raquel doesn’t like that. They missed my reasoning and just focused on me telling them what not to do. At least it got them thinking about it?? But you get my point, I can’t really correct these people when they do baby talk.

When one of my aunts goes to tell Joel hi, a lot of the time she’ll bend down and squeeze his cheeks and do the baby talk. Joel for the most part doesn’t react and sits still, sometimes he’ll be rude and say “stupid,” luckily she doesn’t understand him. After doing this, my aunt will usually look at me with a smile as if I should be pleased with her interaction with Joel. I will not smile back lady, your interaction is demeaning. I think this is why Joel is kind of mean to my aunts when they come over. You can hear him say “Oh no, not again” when he sees them coming in. It’s so funny to my sister and I and luckily I don’t think most of my family understands him when he says it.

Joel deserves to be spoken to normally, please no baby talk.

Cliques

Joel posing so proudly after his first season with Miracle League Basketball with his best bro ūüôā

This is something about that I mentioned in my other post: Comparing. When going to all these event Joel is involved with now I noticed the cliques for parents.

In our case, I’m usually the one to take joel to his events. Sometimes my mom and sister tag a long but for the most part, it’s usually just me. So, maybe the reason I don’t fit in any of these cliques is because I am not a parent. Regardless the cliques exist and bother me. I’ll use Joel’s baseball games with the Miracle League as an example. I chose this one because for some reason, the cliques are so much more predominant during these games. I really don’t know why but they are.

The cliques are divided by race and class. Sadly…

Class:

All of the parents of players who are in private school all sit together and talk to only each other. I clearly remember only one instance when one of these parents talked to me. All this person asked me was what grade is Joel in. When I answered she said, “Oh, I haven’t seen him. He goes to blank (I won’t say the name of the school) right.” I answered no and said he goes to public school. That was the last time I ever spoke to one of them beside the occasional hello.

Race:

Not to sound racist or ugly, but all the parents of the players that go to private school happen to all be white. So on one side, it is all white “richer” people. Then there’s the white parents of players that don’t go to private school on another side. So even the white families are divided. And then there’s the families of color who do not fit into any of these categories are dispersed among the bleachers by their lonesome. To be far, there a lot less colored families but for some reason, no one in these categories mix with each other. There the occasional side conversation between everyone but it always goes back to the cliques.

It shouldn’t bother me, I mean I am not there for them, I am there for my brother. This is just an observation I’ve made and hopefully it’ll change.

You Make Me Brave

IMG_3197A couple of weeks ago we went to the beach for the day. If you don’t know Joel, he LOVES the water. It’s so hard to get him out once he’s in. He’ll yell and hit and push us when we try to get him out. Usually after some struggling, we can get him out. Luckily he usually stays close to the shore, but this time he was more gutsy.

My dad joined us this time for the trip and took joel further out with him. No problem with that until we got out of the water for some snacks and my dad never got back in. Joel was thinking hey, my dad let me go far so I can do it again. By the way, my mom and I are very short and not very good swimmers… we couldnt go as far as my dad did. And I have a huge fear of deep water. If my feet can’t touch the ground I panic.

For some reason, he didn’t go that far until we were trying to leave. I was tying to hold his hand and pull him in, and he’d resist and get further away. My feet couldn’t feel the sand and I was so nervous that he’d get way too far me. I could see him struggle and get scared when the waves would get too high and I saw him inhale water. But the more I tried to pull him in, the more he put up a fight.

There was a man right next to us who refused to help by the way! Ugh!!! Anyways, my mom came to help but she’s just as week and nervous as me. But slowly somehow we got him close to shore. There Joel decided to push me and yell at me and cause a scene. My dad finally showed up and showed Joel his laser tag card and he yell “yay!” And got out… that’s all it took.

Fast forward a couple of weeks to now, I am currently in Guatemala serving in an orphanage with an awesome group. We got together one night for an amazing bonfire worship. One of the songs that we sang was You Make Me Brave. I always loved this song but that night God used it for more than just a good song. I was getting all kinds of emotional throughout the night but while I was talking to a few people afterwards, I began to see the ways God makes me brave in situations like this that I didn’t really think about. I’m scared of deep water but I remained by Joel’s side because God gives me the bravery I need to be there for him in situations where I probably couldn’t do the same for myself or others.

As a result, Joel has an ear infection because of the all the water that got in. He also may not be going to the beach anytime soon. ¬†My poor baby…

Jokes

People are always trying to be funny and sometimes they end up being rude… or just stupid. I’m not referring to bad jokes, I am referring to jokes about special needs/ disabilities. It used to happen a lot when I was in school, which is expected because ya know, dumb teens. But it always hits me hard when it happens now, as an adult coming from other adults.

I don’t know what’s worse… Seeing someone catch themselves making that joke in front of me, them making the joke at all, or seeing them not care about making the joke. It’s all a frustrating experience for me. ¬†I’ll share two sort of recent experiences, both from people I love dearly:

Church:

So this one happened after a Sunday service and a group of us were sitting together at a table talking. ¬†I’ll refer to the person who made the disability joke as ¬†Professor X. I do not remember exactly what was said but someone at the table said something and either mixed up their words or was teasing someone who did. Professor X then rolled his/her eyes, waved his/her arm back and forth by his/her chest and babbled. Then Professor X looked at me with wide eyes and said, “Oh no, I’m sorry I didn’t mean it like it that.”

What I should have said: Then how did you mean it? So, suddenly, it’s not funny because of my brother? Was it funny to you before? Why make the joke? Look, it’s okay. Just please don’t make those jokes regardless if I’m around or not. — Any of that might have been acceptable.

What I said instead: Nothing. I smiled at Professor X and walked away.

Tutti Frutti:

So this one took place at a frozen yogurt shop called Tutti Frutti. I’ll refer this person as Magneto. It was a group of us that had taken several cars. One of the people I was with parked in handicap spot. Actually they parked sideways taking two handicap spots. Now my brother can walk, my issue was not directly related to my brother, my issue was that it was a rude thing to do. So when Magneto got inside I said ask why he/she did that and that it was not cool. Magneto’s response still boils my blood. Magneto said, “But I am handicapped.” With a big ol’ smile like he’she just said the funniest thing and then did the exact same thing that Professor X did in my previous scenario. ^^

I was bolder this time, I didn’t smile. I told Magento to stop laughing, it’s not funny. Magento said, “Oh.” That’s it. Magneto didn’t apologize and that’s okay, but at least I said something.

There have been countless other times. Some that have nothing to do with Joel or his disability; like a whole group of people making fun of sign language, pretending to limp, or pretending to have any disability. It all makes me cringe and makes me what to slap them give them a lesson on decency. They should know better. Education is important people. Don’t be ignorant, don’t make these jokes.

P.S: Same goes for using the word retarded. Just don’t.

Thank God Joel has Down Syndrome

So my family hosts a home group every Friday in which some people from church come over and study the bible to together and what not. Usually at the end of each night, people tell the group if they have a prayer requested or they have something to share.

On last Friday a lady had something we wanted to share. Apparently she had asked the group if they would join her in prayer for a pregnant friend who was told by doctors that her baby might have down syndrome and they wanted to run more test. — That’s understandable. But what she wanted to share was that God is so good because it turns out that the baby doesn’t have down syndrome. Apparently the doctor made a mistake, but thank God the baby is okay. Okay? So a baby with down syndrome is not okay?

I immediately looked at my parents when she said this but they seemed to not be bothered by it. But I was so shocked that she said that. She knows she is in the home of someone with down syndrome. She spoke her words with such confidence and pride that God had answered her prayer. That was so merciful because he didn’t give that baby down syndrome. So, what does she think of my family? Does she think it’s a curse or a punishment? Should we be grieving that Joel has down syndrome? Should we not be grateful to God that Joel has down syndrome?

My parents reaction left me a little upset at them. ¬†How did they not say something? How did they just look at her and nod? I was going to say something, and maybe I should’ve, but I didn’t. I don’t know if my parent felt what I did, I feel like they should have, but who am I say this? I did mention the situation to my mom the next day and all she said was yeah, this lady doesn’t know. That’s it. I don’t know what I expected. I’m not trying to make my parents look bad. They just have different views, grew up in a different time and in a different country. I know they love Joel and protect him, and I know I am not a parent, but I felt strongly about this and I felt they should have too.

All I will say now is I Thank God Joel has down syndrome. I know it may not be something people ask for but I am happy God gave us Joel. I know all of our lives would be completely different if he didn’t have down syndrome. I am grateful that he was created this way. No pity, no prayer requests on changing this, no.