Vitiligo

I’m not sure when we started noticing Joel’s vitiligo but at first, we thought getting it treated was a good idea. I think it was just easier too when he was younger and the white spots weren’t so spread out. When we first started to get him treated he was probably around 10 years old and he did not have as much as he has now. We did see progress but after a few months (or a year or a two, I can’t remember) we stopped going because the dermatologist stopped accepting medicaid. After a few months of no treatment it started coming back in places where his skin color had returned and it was getting bigger. We finally found another dermatologist that accepted medicaid and we started treatment there. Things were okay at first…

The more we went in for treatment, which was twice a week, the more we felt like we should stop. There wasn’t much improvement at all. As he got older, the white spots only increased. Another thing about him getting older was that he hit puberty. Something I should mention is that his white spots reached all over… including his ya know… manly hood. This caused the nurses that treated him to get a little comfortable and that was completely okay with us. We honestly didn’t expect them to treat him there. They were normally very professional and most would not treat that area but get close enoughish and do the rest of his body including his booty. Typically he had the same three nurses and they were very friendly with him. Even though things were okay, we felt like it was pointless and maybe we should stop.

The point of no return was when he began to be seen by a different nurse, we’ll call Popeye. Popeye was very nice and I’m sure had the best intentions but it didn’t work out. Popeye’s methods were different from the other nurses. You see, the chemical/ ointment/whatever the thing was that they rubbed on Joel’s body for his treatment was sort of oily and had a certain type texture that made it hard to come off with water. It was usually very easy to just wipe it off with a dry towel. But Popeye insisted on using wet towels which sort of just spread it out and and it made stay us they even longer while he cleaned Joel up. Also Popeye did every part of Joel’s body that had white spots. Which is a good thing, Popeye proved to be a great nurse that why. But for Joel, I could tell this was embarrassing. By this point Joel is in his mid teen years and this is very awkward for him. After this, we probably went like 2-3 more times and finally quit.

Reasons to quite:

  • There was no improvements anymore
  • Why not embrace Joel’s skin, it certainly doesn’t bother him
  • The dermatologists visit were becoming extremely burdensome for him

So we quit and things are fine. Honestly, who cares that Joel has white spots? I’ll ya who…KIDS! But they are so cute with their questions and concerns about it. I’ll give two examples of kids reacting to Joel’s skin.

  1. My little cousins started asking questions about Joel and why he’s different. I often forget that Joel has vitiligo so when I get asked this by kids I always assume they are talking about his behavior and speech so I explain Down syndrome. After explained to them about Down syndrome I asked them to repeat what they learned to see if they understood. They did but ended with “and that’s why he is two different colors.” I thought it so funny and cute. Then I had to explain vitiligo…
  2. I wrote a post about Camp Able  before but I didn’t talk about this. There was this kid we’ll call Bugs Bunny and for the sake of the story I have to say he’s white. Bugs Bunny was very sweet and invasive (and that’s okay!) He approached me during the talent show and asked if Joel was my brother. After saying yes, Bugs Bunny was like good because I have a question. I told to ask away and he said, “Is Joel okay? You know he’s got a rash that is turning him white. Soon he’ll look like me. You have to take care of him.” This was soooooo funny to me but I didn’t have the heart to correct him. I just said, “thanks, I will take care of him.”

So uhhhhh… the end. That’s my story of Joel and vitiligo. Learning to accept and embrace his skin.

Advertisements

How my “Culture” Accepts Disability

I struggled with writing this but it’s something I want to get off my chest. I have written about it in a small capacity in other posts but I think it’s time to dedicate a whole post on the subject.

I want to share a story about what someone said that happened at church of all places. I’m going to call this person Squidward. Squidward was on stage talking about the bravery of a man in our congregation because of he has a daughter with a disability. The way he described this girl was so inappropriate and disgusting. He repeatedly said she was all twisted up and looked like a monster. He actually said the word monster more than once. It was so hard for me to even type that sentence. Squidward felt good about himself for bragging about the bravery of this man. so he’s brave for loving and caring for his daughter? I get that some people are horrible and leave when they have disabled child. But why praise and call someone brave for doing what any father should. It’s like someone calling me brave for taking care of my brother. I don’t get it. He would not have called him brave if it were a typical family.

Let’s go back to him calling this girl a monster. WHAT?!?  How did he think that was okay? First of all, she is not all twisted up and deformed. She does have motor skills complications among other things but his description was wrong. But this a common thing for Hispanic people in my experience. Not all Hispanics or just not everyone in general knows how to speak about disability. The number of times I have heard the word deformed when it shouldn’t used is ridiculous.  When a family member, we’ll call Mike Wazowski, of mines came to visit from the motherland (El Salvador) a couple of years ago, Mike Wazowski, took one look at Joel and said. “God is good, he is not as deformed as before.” When was he ever deformed!?! Mike Wazowski! When?!? Because I never knew he had deformities…

(I do not mean this as an insult to anyone who does have deformities, it’s very common. I just mean that if someone doesn’t have a deformity, then why say that they do?) If you do not understand the disability that someone has, I think most would prefer you ask rather than just assume and say something completely wrong.

I know I’ve mentioned instances where family members refer to Joel as “pobrecito” meaning poor thing. I hate that. I shared about when I finally told my aunt and mom not to refer to people as pobrecito and they just made fun of me for saying that not to mention how rude of me it was to correct them. A situation recently occurred where my mom used that word when we were driving and saw a someone trip. We both laughed because who doesn’t like a good random fall. Well she called the guy pobrecito then said, ” yeah yeah, I know don’t say that.” I had to explain to her again that I just meant that I didn’t like her calling people with disabilities poor thing just because they have a disability. She then acted like this was the biggest revelation of her life and said that I should have been explained that to her. Okay mom. Okay.

Just like in any culture, not everyone is the same. There are many hispanics (and people in general) that are amazing with Joel and I appreciate y’all!

Also, I feel like I need to add that my mom is great with Joel and loves him dearly. She cares for him with a lot of patience and attentiveness. There’s just things that she says/does because of the way she grew up that I don’t agree with. And I’m sure she doesn’t agree with everything I say and do. Oh well!

 

 

This Week

On Sunday, Joel had his triathlon with Oschner hospital of New Orleans and he had so much fun. That morning though, he gave us such a hard to time leaving the house. He would not get out of bed, so I had to forcefully dress him. Then he just would not come downstairs because he just had to finish is routine. (Dancing to YouTube videos and scrolling through Instagram.) We tried giving him his breakfast to eat in the car because we were running late and he refused; he sat down at the table to eat it… very slowly.

We get there at a good time despite Joel’ s efforts. The first course was swimming. Swimming is Joel’s favorite and he was so excited. He had the cutest smile the whole time. He started very quickly and was ahead but he lost his speed after the first lap. He was still very happy and enjoyed it.

The second was the bike course.  As many of you know, Joel has only recently learned to ride a bike. He had been pretty good on his own and only need help getting starting. So for the triathlon, Joel started really good and very quickly. His buddies weren’t ready and had to run after him. But for some reason Joel lost his balance and crashed into the gate. After that his buddies wouldn’t let go of the bike, which slowed him down a lot. I know they were trying to keep him safe  and they don’t know how Joel usually does. But that course took FOREVER! He still had lots of fun and we were later told that the whole time he was burping and poking his buddies and laughing the whole time.

The final course was the running part. I know Joel does not like to run for long periods of time. So, just like everything else, Joel started fast and eventually ending up walking a lot of the course. Once he saw the finish line, he quickly picked speed and threw his hands in the air. Close to the finish line UNO’s basketball team ( I loved how much they hyped up the kids) joined him yelling and cheering and they all ran into the finish line together. As soon as he crossed the finish line, Joel was met with prizes and a medal.

The whole thing was a lot of fun and Joel had a great experience. I think his favorite part was all the free food, snowballs, and dancing afterwards. Thanks Oschner!

We also started selling handmade soaps to raise funds for Joel’s vocational program for when he finishes high school.  All week Joel has been helping my sister and I make home made soaps, candles, and greeting cards. Unfortunately, we live in a state with a never ending waiting list for waivers and because of my family’s language barrier, Joel got on the list pretty late. Making soap has become a way for us to teach Joel some new skills and to start building is funds. Check out our shop under the about tab in the home page.

Joel and I had our first interview and it is published here: Project Open Doors This is an organization that “provides dedicated media coverage and support to the disability sector and change the way the disability community is reported in the media, and perceived by the community at large.”

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.

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 🙂

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…

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.

My Comforter

Here’s an old picture of Joel, ain’t he cute! A little background on this picture:

Joel was definitely not my comforter when this picture was taken. I was in high school at the time and my sister and friend decided to go to Celebration in the Oaks which is a Christmas event in New Orleans’ City Park. Joel loves going, especially the musical part. When we reached the musical part, Joel loved it so much that he refused to leave. He got so mad that I was telling him it was time to move on. We had already spent too long there but he was having so much fun dancing. It was getting late and Joel wouldn’t stop dancing so I went up to him, grabbed his hand and said let’s go. At that moment my life flashed before my eyes. (kidding, I’m exaggerating but still!) He had hit me, pushed me down and scratched my neck really hard. He immediately felt horrible and began to cry saying sorry over and over again. At least he agreed to leave after that.

Joel has always been my comforter. Despite what I have said in previous posts and above ^^, at home Joel is usually pretty loving and affectionate most of the time. He’s always going in for hugs and kisses and as he’s grown older his hugs have gotten more intense and sweeps us off our feet.

Some of the sweet ways he comforted me was through the years:3D968E3A-BA93-4CAA-8A0B-2C8E83E81FE7

  1.  Random foot massages. This instance I was doing homework.
  2.  Joel always stands up for me when I argue with our parents. I know I probably shouldn’t encourage this but he’s too cute and I love that he chooses my side! He tells my parents to shut up when they raise their voice at me and holds my hand when this happens.
  3.  He gets very concerned when I cry. When he notices that I am crying, he slowly walks close to me and stares at me a bit, then asks “Why?” or “What happened?” Then he’ll wipe my tears and try to make me laugh or distract me by bringing out UNO.

Joel is my comforter and I love him for that and many other reasons!