Regression?

I wanna say Joel was 10 years old in the picture. So about 8 years ago. So little. So precious. So long ago. I miss this little booger.

So Joel seems to be reverting back to some problem behaviors and also picking some up.

He has been more aggressive. Back in his early teen years, Joel was violent with us. He hit, bit, threw chairs, and cursed. He has been calmer in the last few years. He hasn’t bitten anyone recently nor has he thrown chairs or something. But, just like anyone he does get mad gets loud with us and occasionally throw something at the wall. But my point is this: Is he regressing?

Although he’s not as violent as he used to be, his behavior seems to be going in that direction. I know that I’ve mentioned his twitching before. My sister and I are no experts but we think his twitching is a behavioral thing. He tends to do it when he is annoyed or sometimes it seems randomly. The twitching he does can seem scary to outsiders. I’ve been asked if he’s having a seizure, if he’s okay, what’s going on when he does it in public and it makes it worse when people stare. We’ve asked his doctor about it they dismissed it and said basically it is because of down syndrome. I’ve been wanting to get a second opinion but there’s only so much influence I have in that department.

Anyway, I guess he’s been doing that a lot more in school now and his teacher is very concerned about it. We’re used to it because he does it a lot and has been doing it for years. But it has become more frequent, so is this a sign of regression?

He does seem to have to become more aggressive. Again is this regression? Possibly. His behavior wasn’t 100% but it has become a little more like when he was in his younger teens. He is starting to throw things and yell more along with cursing. Although he isn’t really being violent to others like he used to, we’ve noticed that he’ll slap himself. Which is definitely not good either.

Also, another area of concern is Joel’s accidents. He has been pooping his pants and elsewhere way more frequently than he used. I actually recently wrote a blog post about it. It used to be like once every few months and now it is happening at least once a week. To me, this is more clearly a sign of regression but I’m no expert here.

Have any you dealt with regression? What to do, what to do…

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Morgan’s Wonderland

We visited Morgan’s Wonderland two weekends ago. In case you don’t, Morgan’s Wonderland is the only fully inclusive theme park in the world. Sadly, their water park was closed still… huge bummer.

I was very impressed with all of the wheelchair accessible swings and rides. But in my opinion, I think they need more rides , but then again who I am I to make such a suggestion.

Joel had a great time. He loved the swings with the back support cus lord knows this has no balance. I think his favorite was the Ferris Wheel but he also really liked the jeep ride and the sensory village. He was a happy camper.

My favorite part of the whole experience was seeing people of ALL ABILITIES employed here. People with limited mobility, down syndrome, and more. I was in awe, my little heart couldn’t all the inclusiveness. We live in a world the is exclusive and most people don’t even notice. Most people who do not know and love someone with a disability, don’t notice the world isn’t built for them. People don’t regularly give them job opportunities, there are so many place that are wheelchair accessible, and the list goes on. I’m so glad that a place like Morgan’s Wonderland exists.

This video is a tiny little piece of their play, “As You Like It”. The play was made up of people with and without disabilities. INCLUSION like I’ve never seen. It was so beautiful <3

If you find yourself in the San Antonio area, go find this place. You won’t regret it!

Family

Family is supposed to be your biggest support system, but I have found that this is only somewhat true. Family is weird at times. Ya know, families fight and stuff but they also love each other. It is very much love/hate I think. My family is pretty distant now for the most part and I don’t really know why. Some are very supportive and loving but  have also found that some of Joel’s biggest supporters aren’t family.

Example: The picture above is of a family that is basically family. Joel completely loves them and they love him. They are great and I’m so thankful for them. My actual family is distant as I mentioned earlier. A lot of them are great and show love and support for Joel in many ways. But I would like to share an example of one of the time family has not been that great to Joel:

I remember years ago when Joel was maybe about 8 or 9, he was obsessed with his cars. He would always line them all over the house. He knew every time one was moved or missing. Well, some of my cousins came over while Joel’s cars were everywhere and the younger of the bunch that came over was maybe 6-7ish, who we’ll call Rafiki. Well Rafiki ended up taking one of Joel’s cars, ya know, like little boys do. So this led to Joel getting very upset and pointing to Rafiki and then pointing to a car and then pointing to his pocket. (Because Joel couldn’t communicate.) If I remember correctly this led to the moms being tense with each other but they didn’t actually fight. But what I do remember is that my cousins took the situation personal. One of them, who we’ll call Simba, came up to me few days later and flat out said that they didn’t like Joel or my mom anymore. Simba was upset that Joel made such a big deal about the car and he should’ve behaved better because Rafiki was younger.

I remember being shocked and upset but I didn’t say anything. I thought to myself don’t they get it? Joel is different, I was sure they should have known and understanded. Well families fight and get over it all the time, eventually everything was cool. I have a handful of family members that are actually there for Joel and others who are not so much. And that’s okay. Family isn’t always people who are blood related and I’m grateful for the family Joel and I have.

This post is a bit cheesy! Sorry!

Dear Joel

Dear Joel,

I love you so much. You came into my life when I was five years old. I remember being so excited that you were born and I would tell everyone that my mom just had a baby.  I didn’t find out that you had Down syndrome until a long time from then. No one ever explained it to me and I don’t even remember how I found out. I know I was around 10 when my sister  and I found out about Down syndrome and she took it harder and than me, which could’ve been avoided if someone would’ve explained it to us.

I do not think that you know the effect you have on my life. Everything that I do is literally for you. College and taking care of you was hard. I had to skip class a lot to be with you (and for mom) for medical appointments and stuff. But the struggle was always worth it. You have taught me so me so much. If it weren’t for you I would never be working in the disability community like I’m now.

Joel, you have shaped me to be patient.(even though I can still lose my temper.) You have shaped me into a stronger person. There have been times that you have broken my heart and tested your limits, but love always remains. You have shaped me to be the person I am today.

You have brought so much happiness to my life. Life with you is fun and full of adventures. I love taking you to new places and watching you explore. I love seeing you interact with people and try to hold conversations. You are so friendly and kind to the people you come across. (Especially babies and girls.) I love how you always try to use chop sticks even though you can’t. I love to see you progress in your speech and in other skills. I above all, I just love you! I will continue to fight for you and care for you forever. You are the best part of life. Being your sister is my favorite role in life.

Happy Down Syndrome Awareness Month!

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.

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!

 

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….