Shouting Joel’s Worth

We’re FAMOUS!

Just kidding! But we did make our local Telemundo news station… at 10pm… when no one’s watching…

I was called by one of the reporters who also works as a PCA for one of our friends who also has down syndrome. She expressed that she wanted to do a story on us because she spends a lot of time with our mutual friend out in the community and at “special needs” events and has never seen another Hispanic. So her question was why? I think it is evident that there are still people who are ashamed of disability and/or have a stigma that just can’t be shaken. This is especially true about the Hispanic community. From my experience, it’s not often talked about.

So, she was told about us and after viewing our blog she decided we’d make a good interview. When she called she said she wanted us to share how life with Joel is and share about things Joel is involved. Basically wanting us to encourage other Hispanic families to not be ashamed and to show them there is so much they could be doing. she ending sending me questions about my role as a sibling (specifically in terms of his education,)  why I made a blog, what my reaction was to find out he has ds, and what I’d like the Hispanic community to know.

The idea was to get the whole family. My parents immediately said no and my sister was to busy. I came home the day of the interview and my parents were definitely dressed like they were going to be interviewed but kept insisting that they were not going to participate. After my interview was over the interviewer asked if they were anything else I wanted to share if I felt like I left anything out. To this, my dad had a lot of input. So the interviewer asked him a few more times if my parents wanted to be interviewed. They finally gave in. It was very cute, I felt like a proud mama.

My parents rarely talk about important stuff outside of like church related things. I believe I’ve expressed in previous posts my disappointment about my parents never really explaining down syndrome to me and how I have sort of resented their silence at comments others have made about down syndrome. Again, I blame this on their upbringing, being from another country and all that. But I was so proud that they finally decided to speak up. (not saying that they never defended Joel or never spoke up about down syndrome, but from my perspective, I never witnessed it enough.)

This was a first for me. To see my parents vulnerably speaking about how hard it was at first. I never heard Joels’ diagnosis story until now. My dad always says Joel is what saved him. I may share that story later on…

Joel’s diagnosis story:

My mother is a quiet one. When I’ve asked her questions about this, I get one-worded responses. I can’t get mad because I am exactly the same… Just about different things. She and I see down syndrome differently. It’s something I’ve always known. But for her, Down syndrome came to her as a surprise, and not necessarily a good at the time. Something she probably thought would never change her life and affect her every day.

She said her OBGYN was concerned because Joel was too small and thought there be something going on. They wanted to an amniocentesis. My mom thought about it and talked to a friend who advised her not to because she was afraid it could lead to a miscarriage. She told her that it would not matter how he came or what he came with because she knew my mom would care for him and love him either way.  So my mom did not go for it.

When he was born they told her immediately. Although she did not get the formal diagnosis until he was three months. (I know this from snooping old paperwork.)  She said he didn’t cry and weighed 2 pounds. He was so tiny and fragile. She admitted to feeling I guess anguished would be the best translation of the word she used in Spanish. She went on to say it was new and confusing. Both my parents reflected on how hard it was for them especially not really understanding the English completely. My dad also admitted they rejected some help and resources at first not really knowing why; could’ve been pride or refusing to accept it. I’m so glad they ended up in the interview as well.

Anyway,  a lot of the interview was cutoff of course. I like the parts where I shared the most important things did not make it but that’s okay. Hopefully, we were able to spread awareness for down syndrome and encourage those in the Hispanic community to branch out and look for support as well as getting involved in the community. The key take away was to not hide or be ashamed of anyone in the family with down syndrome and to look for help and support because it’s out there.

Here’s the video, it doesn’t get to us until like minute 11:45ish:

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Family Support

A supportive family makes all the difference, along with early intervention. I want to share something that may be offensive and it’s not my intention to do so but I think it’s important.

There’s someone I’ve worked with who we’ll call Minnie. Minnie has down syndrome, is non-verbal, and she’s also dealing with the effects of ageing. I love seeing her and working with her but she’s very mean and aggressive. She is very delayed and does not possess many skills at all. Nothing seems to amuse her except combing her old teddy bear and pacing the halls. She barely sleeps and doesn’t let anyone touch her.

Minnie comes from a family that did not provide the appropriate supports for her growing up. Whatever the reason was, I don’t know… negligence, ignorance, fear, who knows. But I do know that if she would have had interventions, things would be different.

She currently lives alone with staff constantly changing and minimum visits from family. Staff isn’t always the nicest and can be lazy. The house is in bad repair and tiny. She rarely goes out. The family drives away good staff and is always stopping her from getting services and refuses doctor visits and treatments. She did not get much of an education. But I do not doubt that she is loved.

Minnie’s family is not super involved but the involvement they do have is misguided. Ultimately the choices that are have been made for Minnie and continue to be made just cause more harm than good. I’m sure that the family loves her and want the best, but what is best? I’m not saying I’m an expert or that I know best… but here are my thoughts.

  1. Seclusion is the worst
  2. Intervention is important
  3. Family support is everything

Now Minnie’s parents are not alive and she has a lot of siblings who take turns visiting her. As a sibling myself, I cannot imagine being the kind of sibling that leaves them behind like that. I know all families are different and there definitely are families that really can’t take care of someone with a disability… but I just can’t imagine thinking that Joel is better off living away from us and that strangers can take care of him better than we can. I love him so much.

In today’s day in age with so many studies and advocacy work, I feel like there is no excuse to think seclusion is best practice or to send people like Minnie and Joel away. But it still happens… a lot.

Minnie’s life is honestly sad to me and it’s not her fault at all. She grew up in a time where institutionalizing was the norm and schools were not required to teach students with disabilities. Her family was not educated about inclusion, ADA, and all that good stuff. We are still dealing with the remnants of the generation before IDEA and most of those families have no idea how to deal take care of their loved one with a disability… then add the effects of ageing too. Thank goodness things have changed and continue to change for the better.

Saving down syndrome is an ongoing task and we will not stop shouting their worth!

Sometimes, It Gets Crappy

See that beautiful face in the picture? See how adorable he is? Keep that in mind when reading this post!

Living and caring for Joel means that sometimes, you will have to put up with his crap. I mean literally. Literal crap… poo-poo.

He used to have way more frequent accidents when was younger, and naturally, as he got older, he got better.  I’ve mentioned in previous posts, about how it took so long to potty train him and how my mom had to go to the school a lot to change him or pick him after an accident.

Thankfully, the last time he had an accident in school I believe he was in 6th grade. I remember going with my mom to pick him up from school that day and he looked so sad and alone in the office. My poor little one. Knowing what I know, I would’ve argued about the para or nurse not cleaning him up. You’d think that if they go into this field they’d know or at least be kind enough to clean up our loved ones up after accidents but… NO!

The point I want to get, however, is the messes Joel leaves at home. Although I would say that, technically, he hasn’t had a real accident in years, he has had messes. My definition of accident is him pooping in his pants nowhere near the toilet. I don’t count it as an accident if he’s trying to get tot he toilet. To me, the terminology is important because I want him to know he’s doing a great job and not to focus on accidents.  He truly does get very disappointed in himself and cries. And if I get mad at him for his “almost making its” and/or his accidents, it makes it worse. He’ll not only cry but get angry and throw things or hit.

If you are easily grossed out, stop reading here! I’m serious, it gets gross!

Almost Making It

One night about 2 years ago I woke up to Joel silently calling me from the bathroom. Who knows how long he had been calling me, but when I finally got there was a trail of poop on the carpet from his room leading to the bathroom. When I got in the bathroom He was desperately trying to clean up the mess he had left and trying to clean himself in the shower. He was obviously sick and didn’t make it to the toilet. Unfortunately, he made it everywhere else. There was poop all over the toilet bowl dripping unto the floor, poop on the shower curtain, bathroom rugs, towels, and the bathtub. It was such a horrific crime scene. I did get mad at first and yelled and even threatened to go get the parents instead. But after seeing him cry and his efforts to clean it up, I felt bad and woke my sister up to help me clean everything and bathe him. After getting the bathroom and Joel settle I cleaned the trail he left behind and checked his room and bed for more poop. Sure enough, there was more cleaning to do.

This was definitely the worst it has ever been.

Usually, he may have a mess like once or twice a month that is nothing like the one I just mentioned. That was just horrific. Usually its a few drops of poop on the bathroom floor or on unusual spots on the toilet. Occasionally he’ll leave a trail from his bed to the bathroom but that’s rare. It’s all still really gross. We still have to check his booty after he uses it because he doesn’t always do a good job of cleaning himself. It’s gotten harder to help him because he wants to be independent and doesn’t want to let us in the bathroom. Which is completely understandable but I’d rather check him and clean him if needed than for him to get a rash or boils and be stinky.

It’s a struggle, but anything for my boy. Sorry, this was a gross post!! We’re here to share the good, the inspiring, and the crappy of life with down syndrome. Hopefully, at some point, we’ll reach full dependency in the bathroom. Until then, we’ll it take it as it goes.

 

Summer Adventures

First off… HAPPY 4th of JULY!!

Joel has had quite a busy summer. Starting with his graduation, prom, parties… Joel has been having a great time. Earlier last month he went on his annual trip to Lion’s Camp! Sadly I do not have pictures of his trip because he goes off on his own. We used to pack him a disposable camera but all the pictures would come out bad or the camera wouldn’t even be used. Its a whole week of fun and no parents, Joel always comes back so happy. When I ask him what he did, all he tells me is a list of the food he’s eaten. He’s like; “uh chicken, pizza, uh hot dogs.” As soon as comes home, he unpacks and shows all his goodies and crafts. The week is so fun for him but we miss him terribly at home.

After this trip, he had one day to rest and then we were off to our first family trip to the motherland (El Salvador)  in 20 years. This was Joel’s first time out of the country.  He gets excited and nervous flying and is too self-conscious to make noise. An example of this is that even though he has earphones on, he’ll the volume on his IPad really low and looks around a lot to make sure he is not bothering anyone. He packed his UNO cards and his memory card game but he didn’t want to play with anything. He barely even wanted to play with his IPad. He was more nervous than he has previously been on plane rides. But he was more himself after the food came.

Overall the trip was good but Joel had his moments. He constantly asked for my dad who did not go on the trip with us. He asked to call him a lot and got made very easily. Joel does this thing a lot where he sort of fitches and shakes his head and it almost looks uncontrollable or like he just does it out of instinct whenever he is uncomfortable and annoyed at something. Well on the trip he did it wayyyyy more often and waaayyyyyy more aggressively. A lot of the times when he did it, it was like he did i out of nowhere. Usually, when he does this at home, we can tell its because someone stared at him or someone did something he doesn’t like or whatever. But on the trip, it constantly happend out of the blue. Everyone’s theory is because he was hot and too many bugs. Well, we live in Louisiana where there are bugs all the time and it is so hot here too. Although almost no one has AC in El Salvador, which could have contributed to his annoyance, I think he just wanted to be home.

While on the trip Joel met our cousin, Jose, who also has down syndrome. My mom has been wanting these to meet forever and she finally got her to wish. Jose is 27 and so funny. Well, Joel is too. They both have very limited communication and are super adorable. Although I think Jose is nicer, who knows how he’d act if I actually led with him. haha… Everyone thinks Joel is nice but when you live with him or spend a lot of time with him you’ll see his mean and aggressive side.

Overall it was a great trip and Joel had fun. Let’s see what the rest of his summer holds.

 

Graduation?

If you follow us on social media, then you probably know Joel attended his first regular high school prom and he attended his graduation! Woo-hoo!

Prom:

Joel is an amazing dancer and loves going to shindings, but we have never let him venture out on his own. He’s gone to special needs proms and dances but my sister and I have always gone with him. I know… I know… special needs proms? What about inclusiveness?!?! Look, I’m all for inclusion, I really am but I’m also for Joel having a good time. Joel loves going to special needs proms and I won’t stop him from going for the sake of inclusion. With that said, he technically wasn’t on his own because his teacher accompanied him with a few of his classmates but nonetheless, he was free to do what he wanted. Which can be scary. What if does something inappropriate? What if someone does something inappropriate to him? What is he gets lost? What if the other kids are mean?

But it turned out great. Our family gets nervous about letting go off on his own especially because he’s considered non-verbal so he can’t tell us if something happened. He’s also very friendly and can easily be persuaded do something he shouldn’t. He does things on his own here and there and finally, Joel got to experience his first real prom. He even made our local news:

Graduation:

Joel is 18 and this was his senior year, but he can and will go back to high school for at most another four years. WHAT?!?! How??! Let me explain; so Joel is not on a diploma track. This means when he walked across stage he got what is called is a certificate of attendance. He can stay until he’s 22. Some people ask why, why doesn’t he just leave after his actual senior year like everyone else. Well, because simply put, we don’t have the money to provide him with the services and resources he is entitled to while still in the public school setting. There are some vocational programs we’d like to get him into as well but it’s expensive.

As I’ve mentioned before, Joel is on a waiting list for a waiver that would be able to provide those services to him but the waiting list is about 14 years long. Although Louisiana has changed it to need-based, one still needs a score of a 4 or 3 to get services now otherwise your back on the waiting list. Joel was given a score of 1.  4 = critical, 1= planning (he doesn’t need anything right now apparently – *insert eye roll here*.) This is a whole nother story; I’ll get into this in more detail in another post.  (Side note: this is why we have our shop)

So did Joel really graduate? I guess not, but he walked across the stage and loved it. We decided to let him walk across the stage this year because this would be his exiting year if he were a typical student. Ya know, why not complete the senior year experience for him now with the schoolmates he’s been with forever.

BEHOLD:

You can tell he was a little nervous before the ceremony but look at his sweet smile afterward.

Joel has always wanted a waterslide for his birthday, but his birthday is too cold. So after his graduation, we decided to throw him a water slide party.

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!

Death by Cop

Ethan Saylor. He was a 26 year-old who had down syndrome. He died five years ago while in police custody. I know I’ve written about it before but I wanted to revisit Ethan’s case.

Ethan loved the movie Zero Dark Thirty. He loved it so much that while his caretaker when to get the car after they watched it, he snuck back in without paying. The manager of the theater called the police on him. They did not know how to handle a situation with a person with an intellectual disability. They killed him and no one can convince me otherwise.

Ethan loved law enforcement to the point he would call 911 for simple questions. His mother even sent them cookies as a thank you for all of the unnecessary trips they made to her house because of Ethan. How did he end up dead at the hands of police officers?

They were warned:

by his caretaker of how he would react if touched. All they had to do is wait, inform the mom, and I don’t know… not kill him. They did not listen. They simply did not have the training or knowledge to deal with someone with an intellectual disabilities. Its like they had never encountered someone with down syndrome. Yes, he kicked and cursed but he did not understand what was happening!

I think that sometimes people like me that is surrounded by people with disabilities all the time, we forget there is a whole world out there isn’t. The majority of people do not interact with people with disabilities at all and do not even recognize it when they see it. So scary.

They were not in uniform:

He did not recognize them as law enforcement because they were not in uniform. How many times do we sit there and warn our loved ones with disabilities  not to trust strangers. Ethan, in his eyes was literally approached by strangers trying to convince him to leave with them.

I don’t know about y’all but that is literally what I am always telling Joel. Do not follow strangers, don’t do what they tell you too, ya know so on and so on. Joel also recognizes police in uniform. He loves them and always daps them off and greets them. I honestly do not think he would recognize people out of uniform as police even if they tell him they are.  Joel is usually very obedient to strangers and I do not if that’s good or bad anymore.

Anyway I bring up Ethan’s story again because after five years, they have finally reached a settlement of $1.9 million.  The officers were cleared of any wrongdoing. The jury determined that no charges were warranted. As part of the settlement, the state and police deny any liability.

“There’s a cliche that you can’t assign a dollar amount to a human being’s life, but that is our system, that’s the only remedy we have for justice in our system,” Saylor’s mother, Patti Saylor, said Tuesday. “We’re not comforted by the money as much as knowing we gave our son everything we could, that we stood up for him until we exhausted all avenues for standing up for him. Because his life mattered. What happened to him should not have happened.”

I am disgusted. Not by the parents, they did all they could. I am disgusted by the system, by the jury, by the deputies, and by some of the ugliest comments I’ve seen. His parents are heroes. They fought for him until they couldn’t fight anymore. As a result, Maryland (the state this happened) has changed the way they train law enforcement and now teaches how best to interact with people with intellectual disabilities. There is also now a program that was created in Ethan’s memory that teaches people with intellectual disabilities to educate law enforcement during their training.  This is what saving down syndrome looks like.

Patti Saylor said after four years of fighting for her son in court, the settlement comes with “mixed emotions.” But, she said, she and Ethan’s father, Ron, agreed the time was right for them to accept it and“focus on healing.”

“It’s been four years of gut-wrenching reports and judges’ opinions and depositions and defending my son’s right to be seen as human, to be seen as valuable,” she said. “I’m relieved that it’s over. I’m tired. But I really feel like as a mom, I did what I needed to do to do right by my son and see this to the very end.”

I hate this story and so many others. But it serves as a reminder of why down syndrome (and basically every other disability) needs to be saved. The world isn’t always a safe place for our loved ones. We need to remember that and do our part. Read Police Brutality and Down Syndrome, a post I wrote a few months ago that speaks more on this.

 

Here is the article where most of this information was taken from:

https://www.washingtonpost.com/local/settlement-reached-in-police-custody-death-of-man-with-down-syndrome/2018/04/24/7d53c0ca-47fe-11e8-827e-190efaf1f1ee_story.html?noredirect=on&utm_term=.e4bd11745520

Like They Know What Love Is

I recently had an encounter with Joel’s principal that left me a little shocked. My mom and I were waiting in the office for Joel’s IEP and the principal saw us and started a conversation. She recognized us and started talking to us about Joel and his girlfriend, we’ll call Princess Peach. Princess Peach and Joel are such a funny couple. She shows more affection and constantly sends home notes, drawings, and gifts for Joel. For the longest Joel would deny their relationship and now most days he says yes when asked if Princess Peach is his girlfriend. They have known each other since elementary school but were separated in middle school only to reunite in high school. It was written in the stars!pexels-photo-326612.jpeg

Many times when other school staff see us they’ll comment to us about this relationship like how funny they are or cute they are. But no one said anything demeaning until our a little bump in to his principal. Here’s the conversation:

P: Y’all here for Joel huh?

Me: Yep, it’s his IEP meeting day.

P: Joel is something else! I see him all the time in the halls with his girlfriend. Y’all knew about Princess Peach right?

Me: Yeah, they are so funny, Joel gotta learn some manners though. He’ll only claim her on good days.

P: Yeah, I see them holding hands, he’ll have his arm around her. This was followed by a laugh and the following statement that ruined the conversation: Like they know what love is!

Me: Just like any other teenager right?

P: Yeah but you know because of who they are:

Me: *stares blankly*

P: Okay, awkward silence, backs away and shifts her glance, then she leaves.

What kind of statement is that? What does their disability have to do with their ability to love. I might agree teens in general may not know what love is but not really because I met my boyfriend 5 years ago in high school and we’ve been together ever since…

Like they know what love is…

ds couple

Like they know what love is…

ds couple 2

Like they know what love is…

ds couple 3

Like they know what love is…

ds couple 1

You can’t tell me that people with cognitive/intellectual/developmental disabilities do not know what love is. It may not look the same but they can certainly love. I found an article on this topic and here’s what stuck out the most to me:

“The capacity for people with developmental disabilities to live full, rich lives is often underestimated,” says The Arc San Francisco CEO Dr. Glenn Motola, “but love is found across the entire spectrum of  the human experience and includes us all, people with disabilities and people without disabilities.” Read the whole story below:

https://blog.sfgate.com/lshumaker/2013/02/07/love-relationships-and-people-with-developmental-disabilities-a-valentine-story/

I found a study on love and people with intellectual disabilities and I think that it is very interesting and worth your time.

“According to the findings of this study, the young adults with ID understand love very concretely. One of the most important findings was how positively they all perceived love and its importance in their lives. Love was considered important and valuable to themselves and to people in general as it was recognized as a crucial element of well-being.” I encourage you to at least read the results and summary of this study using the link below.

https://www.tandfonline.com/doi/full/10.1080/02673843.2016.1167749

People have this misconception that people with disabilities do not love the same or even want the same kind of relationship that people without disabilities have. The truth is many of them want to have relationships and most never learn how to do in a healthy way which can lead to some serious problems. Don’t leave them out o the conversation about these topics.

Happy World Down Syndrome Day

It’s World Down Syndrome DAY!!

I hope everyone is celebrating in some way today. I love seeing the pictures of the crazy socks and heartfelt stories. I am so blessed to be part of the down syndrome community. I know I’ve mentioned a million times how Joel has shaped my life and how proud I am to be his sister, but I can’t say it enough. Joel is everything.

But I wanted to take time and revisit why we still need this day. Why we still need down syndrome awareness. The answer is because there are still people that need to be educated on down syndrome. It is not something to avoid, to fear or to hate. We still have hate crimes, discrimination, insults, memes, derogatory language, and so much hate.

We still see stories like this one:

Kentucky

They neglected and and starved their 20 yr old son with ds to death

http://www.wdrb.com/story/37606012/police-say-down-syndrome-man-in-winchester-had-no-food-in-his-stomach-when-he-was-found-dead

and like these:Police

Police Brutality and Down Syndrome

We need organizations like Save Down Syndrome other organization like the ones listed in here, and people like you to keep promoting and shouting their worth.

We will continue to spread awareness:

  • Until the first response to a down syndrome diagnosis is not “I’m Sorry.”
  • Until students with down syndrome are included with their non-disabled peers.
  • Until people stop using phrases like retarded, mongoloid, downs kid, etc.
  • Until people stop looking for a cure or a miracle.
  • Until abortion isn’t the first the thing a doctor suggests just because the child may be born with down syndrome.

 

With that being said Down syndrome should be celebrated. I love that the world can honor our loved ones today on 3/21. The day signifies the 3rd copy of the 21st chromosome and this is a great way to spread awareness about this disability. I think in my house everyday is down syndrome day. Life is just so good with Joel and I cannot imagine a world without him. He makes me who I am in more ways than I can even fathom. Happy World Down’s Syndrome Day!!

I’m Sorry

This picture was taken in Leakey, Texas this past Thanksgiving. Joel struggled so hard to get up there and I think I’ve mentioned this before but he really has some balance issues. We all had to push him up because he was determined to get there. I love my boy! Any who….

Some times, people think the appropriate response when I tell them my brother has down syndrome is, “Oh, I’m sorry.”

Why?

I remember one of the first times that happened to me and I responded in a civil way and said that it was completely okay, there’s nothing to be sorry about. And this person said, “No, no. We don’t need to talk about it.”  Alright… Whatever man.

So let me tell you about my boyfriend, Huy. He met Joel right away back when we were in high school and we did a lot of volunteering with Key Club. I would always bring my brother along to events and everyone knew him. So Huy knew when we started dating that Joel had Down syndrome and he never really talked about it, but he always played with him and treated him great. So when he told his sister about us and about Joel, they were very sympathetic about Joel. Because ya know.. apparently it is a very sad thing to have a family member with Down syndrome. They asked him how long Joel has to live. Huy did not tell me about this conversation until months later. He was scared to bring it up or something because he did not realize that people with Down syndrome have a lower life expectancy. (They don’t anymore, he just thought that because what his sisters said) I can’t remember how he finally told me about the conversation but by that time he was not as ignorant about Down syndrome anymore and he told me the story as in a, “can you believe it” kinda way. I think I got a little offended at first but I can’t be mad that they didn’t know. But it was also funny to me because I knew he knew better at the time he told me. I’m glad he is not ignorant about it anymore, his relationship with Joel makes me one happy camper.

DISCLAIMER: His family is great and they have never said anything rude or inappropriate about Joel. They are loving and so nice to us. Often times I’m very jealous that I don’t see them as much. Y’all have no idea how much I like his family. So just know I’m not trying to make them look bad, I’m just sharing my life as always. 

My most recent encounter with the response of I’m sorry was at a restaurant. At the table was my sister, me, Joel, and our friend. So we all look ethnic and different from each other so the hostess for some reason wanted to guess all of our ethnicities. (in her defense, she was also Hispanic, and Hispanics always try to guess what country everyone is from.) Weird from the start. When she got to Joel she said, “Umm, I don’t know, you’re confusing. Maybe Asian.” All I said was, “No he has Down syndrome.” She got very awkward and said she so sorry and she did not come back to our table I believe, if she did I probably would have ignored her honestly. I remember being really mad about the hostess. I was really negative about it and rude. Which is probably not the best way to handle a situation like like. It was just weird thing for her to do in the first place.

People with Down syndrome aren’t sick and they do not have diseases. They can most definitely without life their parents nowadays. In past things were different and their life expectancy was in the 30’s I believe but most people believe it is because for the most part they were put in institutions and weren’t cared for as much, therefore prone to more sicknesses and what not. Luckily this is no longer the case. Although there are exceptions, like those who have other ailments along with Down syndrome. But Down syndrome alone is not a cause of death. DS Facts

A lot of people aren’t exposed to disabilities and therefore do not know how to react or what to say. I get it. It’s okay, we can use these types of situations as a learning experience. I guess some people are sorry because they think caring for someone with a disability is hard. Which sometimes it is. But I’m not sorry about my life, Joel isn’t sorry about his life and I know lots of families who aren’t sorry about their lives.