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.

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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.”

That Time Joel Got Lost

At this time I was working at Baskin Robbins and Joel loved to go visit me while I worked. He was home with my mom and he asked to go and mom was like sure! But she told him to wait while she changed her shirt. I don’t know what Joel thought she said but he was like, alright I’m out, I gotta get to Baskin Robbins.

So my mom comes out of her room and the door is open… and Joel is GONE! My mom’s worst nightmare (and mine). She checked the backyard first and then she called me to drive around the neighborhood to look for him. (Also, at this time my mom couldn’t drive because she had just eye surgery so she couldn’t drive around on her own.) So I leave work and start driving to my house and I found him quickly. He saw me and got very excited, I pulled over and he got in. He was so happy and cute and sad, “ice cream!”

I tried really hard to be tough with him but he was too darn cute! I laughed and explained that he can’t do that. I take him to Baskin Robbins because by this time my mom is with aunt driving around looking for him. When they get there they are both teary eyed and hug him. They were very silent, eventually they were telling him not to do that. I think he got the point because he has never done it again.

I like that he was like I can’t for my mom, I need ice cream.. it’s so funny. But, no it actually was scary. The Baskin Robbins I worked at is in our neighborhood. but you have to cross a hwy to get there. When I found him, he was a few blocks from the highway. I know he never looks both ways, at least when he’s with me. Not only is that scary, but strangers are scary.

Well, that’s my story.

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.

 

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.