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.
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:
Joel is my comforter and I love him for that and many other reasons!
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.
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.
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.
It may have taken 17 years but, Joel can finally ride a bike!
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.
While I was in college I worked at our neighborhood Baskin Robbins. Joel would come in all the time (once he disappeared from home because of Baskin Robbins, but that’s a different story for another day.) He loved that place and still does but we have to limit his visits now for health reasons. Many times when my family would come in while I was working Joel would refuse to leave. There were several occasions that our parents left him there while I was working because they could not get him out of the store. Luckily, the owner was very cool about it every time and also said Joel could stay as long as he wants. We did not think much of it other than thinking he was being rebellious towards our parents.
Joel can be very hard-headed at times, just like any other teenage boy. He listens when he wants too and has a hard time being obedient. BUT! This is only the case with us, when he’s at school, camp, or with other people who are not in his immediate family, he is such an angel. To be fair, his behavior has gotten better, but at the time this story is taking place he was still being difficult, but mostly just to our parents.
So, it was one of those days that Joel was refusing to go home and hiding behind the counter so our mom would give up trying to take him out. But this time was a little different instead of chilling in the back and playing games on his IPod, he stayed by the counter and said the word, work. (a little side note here: at this time I had also started working at our state’s PTI and I was beginning to learn a lot about disability and employment and all that good stuff) So, this put ideas in my head and I wondered if maybe Joel was ready to work. I called the owner and asked if it was okay to let Joel work with me, thankfully he was super supportive and said he could also take a share of the tips too.
So I gave him my Baskin-Robbins hat and he became the happiest kid ever. He did everything I told him to like a good employee. He helped me make cones, wash dishes, restock the supplies, and hand customers their order.
Most people were very nice and started conversations with us about disability and how cool it was to see him there. But there’s always a bad apple. One lady, although she never said anything, was bothered by him. She kept giving him a look and she didn’t want to take her cone from his hands. This caused Joel to drop the cone and he got upset and went to sit in the back. Still the lady never said anything, I fixed her order and she left. I was the kind of employee that never took crap like that from customers, but this time I kept my cool and went to tell Joel it was okay and we would try again later. He was trying to explain himself to me but he’s speech is very hard to understand, but he was able to pull himself together and went back to work. Later that night he called my dad to come get him when he was tired. He went home feeling accomplished and with some tip money.
He continued to pop in to work with me whenever he wanted until I stopped working there. I am very grateful that we know such an open minded person such as Ramzy, the owner of our Baskin Robbins, that allowed Joel, who can’t speak and only works when he feels like it, to come in whenever he wants for as long as he wants. What kind of employer does that? It’s truly amazing and encouraging to know there are people like this out there. You’ll never know what opportunities are out there until to open up and ask.
Here’s the same story but written for my job: FHF’s Version