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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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!!

Camp Able

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

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

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

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

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

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

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

Here are some pics:

 

 

 

 

 

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

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

Baby Talk

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

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

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

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

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

Cliques

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

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

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

The cliques are divided by race and class. Sadly…

Class:

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

Race:

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

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

You Make Me Brave

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

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

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

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

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

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

Jokes

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

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

Church:

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

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

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

Tutti Frutti:

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

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

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

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

Thank God Joel has Down Syndrome

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

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

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

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

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

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!

 

Respect

The way we speak says a lot, whether we realize it or not. Especially when we speak to people with disabilities. It is important that we are aware of our terminology and manner of speaking. There is power in our language and in what we put labels on.

The first thing we need to understand is that people with disabilities are not suffering from a tragedy, struggling to become normal, victims, nor are they retarded. To most people, their diagnosis is not their most important characteristic. (to others, it is the most important) We normally do not go around introducing ourselves as, “Hello, I’m diabetic Jane.” So why would we do the same to a person with any kind of disability. They are people first, not their diagnosis. Right? Or maybe this is not always the case…

From watching Born This Way and reading other blogs and articles, I realized something. What I wrote in the ^ above paragraph, it does not apply to everyone. Many people wear their disability or condition with pride. Something John from Born This Way says a lot is “I am down syndrome.” Now, I do not know if he knows the power in that statement, but I do and I know many others do as well. To me, it means that he recognizes that down syndrome is part of who he is, it is not just a diagnosis.

So, where do I stand with the whole people first language thing? I think that whole movement (campaign?) is great. Personally, I use people first language professionally and most of the time generally. But I also think that some people with disabilities don’t care and others purposely want to identify with their disability first. It is a personal decision and who are we to correct someone who chooses one over the other. There have been many times I would see a post from a parent and they would not use people first language and a lot of the comments are correcting this parent. It think it’s crazy to correct someone based on whether or not they use people first language. Like I said, it is a personal decision.  Now some people use it in a hurtful or demeaning way, that is not who I am defending!

There have been many times that I have heard someone say, “poor thing”, “how sad”, or even “it makes me feel so sorry” referring to Joel. I get that since he has down syndrome, you can see he has a disability just by looking at him. So just by his disability being visible, we get a lot of looks and phrases like the ones I just mentioned. I know they may say this with good intentions or maybe even out ignorance; they are not trying to be rude but things like that are not acceptable to say. My brother lives a very happy and productive life, and nothing about that is sad. He may be different and require more patience but its not sad.

When speaking to people with disabilities, it is important to remember that they deserve to be treated as an equal. Speak to them first, as opposed to speaking to whoever they are with, it is important to acknowledge them. Give them eye contact and make sure that you give them time to listen, process, and respond. If they are having trouble understanding, please be patient with them.

I know that for me it can be frustrating to constantly repeat myself, but I try not to let that show. Joel is not oblivious to the difference in my tone when I speak, so I need to be mindful of the tones I use and the reactions I give after they respond. In my Joel’s case, unfortunately, I can lose my patience. The more I have to repeat myself, the louder I can get. He notices when this happens and constantly apologizes. Once he starts apologizing I feel terrible and explain to him that he did nothing wrong and he should not apologize.

Another important thing I need remember is to use appropriate language that Joel or other people with disabilities I come across will understand; don’t use jargon, difficult words, or figure of speeches. This is not true for everyone but for most people with cognitive disabilities I think it is. It is also important to understand that sometimes it takes time for them to trust others, so do not take hesitance or silence personal. Everyone is different and not everyone will react the same way and they are not all on the same level. Some know and understand more, so not everything I mentioned on this post applies. The difficulties of one is not the same for all. The important thing to take away from this is RESPECT.

FHF’s Version