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.

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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

I Can Bike

I thought I’d share one of Joel’s recent endeavors: I Can Bike Camp.

I can Bike is a five day camp for people with down syndrome and related conditions who can’t ride bikes. I first heard of this camp while watching an episode of born This Way. I thought it was very cool and thought Joel would benefit from it, but I was like they’ll never come here. And I was right, they hosted a camp almost an hour from where we live but I was like close enough! (Shout out to Up21 in Mandeville for paying half of the camp cost and paying for the bike![:)

Most people with down syndrome have a lot of trouble balancing, like Joel usually has trouble sitting in chairs with no backs and on swings. He hasn’t fallen off a swing in a while but you can clearly see he is trying hard not keep his balance.

Exhibit A:JoelS

So anyways, I Can Bike turned out to be a super cool experience. He really liked it despite his facial expression during each session. He was so serious, never smiled, and would just give a shifty glance every time he rolled passed us. Once again I would compare this to the other participants who roll passed their families and say, “I love you” or “hi mom.” But when we would leave fro the day, he would be all giggly and cute.  The other parents said things like, “wow he means business” and “he’s serious, he came to learn and not to play.” This was a better perspective than mine honestly, I was thinking he’s just mean to us in front of others. Whichever is true, it’s okay!

Joel did very well all the days of the camp except the last one, probably because it was more independent the lat day. He took his first fall and scraped his knee. If this would have happened at home, he would’ve gotten mad and kicked whatever was near him. He did get mad however, since the volunteers and staff at I Can Bike are trained to praise them when they fall, Joel kept his cool and was encouraged to get back one.

A few days after camp we took him to the park to practice with us. He was really excited at first and wouldn’t stop giggling when we got him on. But he would freak out when we would let him go. He yelled, “Aquel Help!” (He calls me Aquel instead of Raquel.) every time I let go. He would go on for a minute and then panic.  But we preserved on and finally got him to pedal without us holding his back and handle. It took about two hours to go through the park which would normally takes like 45ish minute. But once he got a hang of it, he finished the track with no issue, just non stop giggles.

Joelp

Joel on one of his many breaks while riding his bike

It may have taken 17 years but, Joel can finally ride a bike!

Comparing

BEHOLD: Joel in all his glory posing in front of the Waterwall in Houston in the spring of 2015. I like this picture of Joel because he’s doing one of his favorite things, posing. I do not know what kind of pose he thinks he’s doing but he thought it was hilarious.

Growing up, we did not interact or spend a lot of time with other people with disabilities.  (In fact, I didn’t even know Joel had a disability until I was like 8ish… I’ll explain that in another post) This was not because we tried not too, but because my family doesn’t tend to go out look for the opportunity to do so. Part of it could be cultural and the language barrier, but I as I got older I wanted to change that. Up until about 4 years ago (Joel’s first time going to Lions Camp) his only interaction with other people with disabilities was through school and the occasional bump in at the mall or something.

When I started working at my current job, Families Helping Families ( which is our state’s PTI) I learned about so many more opportunity for Joel and I tried to get him involved in as many things as possible. Like Miracle League, Special Olympics, Crossfit, other camps, dances, and all kinds of other random activities and events. So he now does sports basically year round and he loves it. But there are few things that I noticed: parent cliques and the difference between Joel and the rest of kids. (Kids?? other people with disabilities? participants? you know what I mean.)

So without further ado… Comparing:

I was sort of ignorant when it came to down syndrome, I knew the basics, the things they teach you in school about it, and would see an occasion random story on my Facebook feed about someone with down syndrome. But overall my view of down syndrome was limited to what my experiences with Joel were.

With that said, let me tell you about Joel and how I compare him to the others:

He is kind of mean to us most of the time when he’s playing sports, like he gets mad when he watch him too much, doesn’t respond well to our cheers, kisses, thumbs up, and waves, and doesn’t want to be near us unless it is time to go. And I would compare this the way most of the other kids interacted with their families. A lot of them were loving and blew kisses and loved the praise and attention from their families. Basically the opposite of Joel. Now, it’s not as bad as it sounds. He glances over to us during the game to make sure we’re watching. He’ll tell us he had fun, smile, and sometimes even hold our hand when the game is over. But it is still different from the way most of the other kids show there affection and I got jealous at first.  I have come to the conclusion that this may be all the affection we will get from him, at least during sports, and that’s okay. And to be fair, he doesn’t always get mad at us and at home he is much more affectionate.

Joel is also mostly nonverbal. He tries his best to communicate and but he can only say a handful of words. Somethings you can only understand if you spend enough time with him. And once a gain I would compare this to the other kids, specifically the other kids with down syndrome. They all talk. Some talk way more than others but I haven’t met a single one who has speech as bad as Joel. This made me very jealous, and I know I shouldn’t be. Everyone learns and grows at their own pace regardless of whether or not they have a disability. I have seen his speech improve, in the past couple years but it is still pretty behind most of the other people with down syndrome that I have met. Even the younger ones. It used to bother me, and to be honest it still makes me jealous at times. But I am coming to terms with where Joel is. If I keep comparing Joel to others, I won’t be grateful for where he is. And I am grateful for where he is. I am so proud of him, he has come a long way and has more to learn. Even if he doesn’t improve his speech, it’ll be enough for me.

The Cliques: I’ll write about this later on.