Friendships

The story behind this picture is a good one. My sister was taking my senior pictures when I graduated college and Joel interrupted to pose. I’ll post the rest of those pictures at the bottom of this post.

Joel makes friends very easily, especially if your a guy around his age. I’m so appreciative of everyone who is kind and accepts his friendship. Thank you to those who:

  • listen to him even though you can’t understand what he is saying
  • go along with never ending games of poking and pretending it wasn’t him
  • hold his hand
  • Let him play on their phone
  • Let him take pictures for Snapchat and Instagram
  • Texting or Snapchatting/DMing him back even though he sends jibberish

You’re the best. But like always there’s always people who are just are not too nice. There was this one time when we went to a restaurant where this person, we’ll call Mr.Krabs, worked. Mr.Krabs is a family friendish, and goes to our church. He’s close to Joel’s age and like any normal person, Joel sees this person as a peer and always gets excited when he sees him because Joel sees this person as a friend. To be fair, Mr. Krabs usually will be nice and greet him in a playful way. But Mr.Krabs, couldn’t keep pretending to be nice to Joel all the time. (Mr. Krabs and I argued a lot about little things in a friendshipy kinda way but we remained amicable, but somethings I can’t easily look past. And somethings includes how you treat my brother.) 

So, we go to the restaurant and Joel immediately gets excited when he sees Mr.Krabs. This means Joel is loud and laughing a lot. Joel tries to be playful and is not taking the hints that Mr.Krabs is not in the mood. (Sometimes I can see that Joel is being annoying and I try calm him down, but if your gonna be rude, I’ll let him annoy you.)  Mr. Krabs kept giving me looks as if he wanted me to do something. At first I was trying calm Joel down but I can’t control him. The looks were okay I guess because they were pointed at me and not Joel. But as soon as his annoyed face and tone of his voice was directed at Joel, I had a problem. Strike 1.

The restaurant is small and it wasn’t very busy, maybe Mr. Krabs was having a bad day. I know I can be mean to Joel sometimes, but all Mr. Krabs had to do was be nice for 10 minutes. We weren’t in there very long at all. Joel was eating his order very happily and making gestures with his hands. Mr. Krabs grabbed his hands and placed them on the counter and said “shhhhhh.” Strike 2. Joel is thinking this is a funny game and he doesn’t see that Mr. Krabs isn’t being nice. I let it go at first, because I didn’t want to argue with him. Then came strike 3. He had had enough, looked at Joel and said, “Oh My God!” Then turned to me and said, “Can’t you control your brother.” So I yelled back kinda. “No, I can’t. You know he has down syndrome and he doesn’t get that he’s annoying you. He is just trying to play with you because he sees you as a friend.” Mr. Krabs then said, “Well, make him chill out.” So we just left. There was no point to continue arguing.

I can’t make everyone patient and kind to Joel but I wish I could. It always catches me off guard when I come across people who are not kind about disabilities. I always expect people to be patient and nice, and that is not always going to happen.

Joel’s reaction to this situation is very sweet. He never saw the rudeness and continues to always see this person as a friend and is always excited to see him. Someone asked me once who I admire the most in my life and my answer was Joel. Then they asked why and I dreaded answering because I hate getting emotional. My answer is because he always sees the good in people. He is never prejudice. He doesn’t hold grudges. He will always see you as a friend first. You can be mean to him and he may not notice and if he does, he’ll forgive you within minutes. I love him dearly, and I’m so thankful for those of you who are kind to him and keep his friendship alive.

 

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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.