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…
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:
Thankfully the world started to change for the better around the ’70s and people with Down syndrome and other developmental disabilities were seen as human. Through the years, many institutions were closed down, and it was now expected that people with Down syndrome would live at home, go to school and have fundamental human and civil rights, thanks to ADA and IDEA. In the last three decades, we have seen so much improvement in the lives of people with developmental disabilities. Many of these individuals are graduating, getting jobs, getting married; overall living very healthy and productive lives. (if you want to read more about ADA and IDEA, visit our resources tab)
People who lived in institutions all of their lives have missed out on show much and were capable of so much more. Here’s an example: https://www.lifenews.com/2016/05/10/family-starved-32-year-old-man-with-down-syndrome-to-death-he-weighed-only-69-pounds/
Have you ever you lost your voice and tried to tell someone something but no one could guess what you were saying? That’s sort of Joel every day. It really is such a horrible feeling when Joel is trying so hard to tell me something and I can’t understand him. The ability to communicate is often something the average Joe doesn’t think about. Joel mostly communicates through gestures and emojis. He does try to speak but most of it is very difficult to understand. The more you’re around him the more you’ll understand him. But even for me, there are times I can’t understand anything he’s saying.
I used to get jealous of other people with Down syndrome who could speak so well. I thought it was unfair and I always would think about how things would be different if he would’ve had better interventions or if we (his family) would have known better and tried harder or if the school system was better… These thoughts won’t change anything.
I’d be lying if I say these thoughts didn’t creep back in every now and then.
We’ve tried communication boards but he doesn’t really care for them. He’s used some type of assistive technology device when he was in elementary school but somehow the school system says he doesn’t need it now and/or he can’t learn to use. He used to do sign language back when he was in early steps but the school system refused to teach him. We’ve requested these at every IEP and it has gone to the school board nothing comes of it. (I definitely need to try again) We’ve looked at outside agencies for speech therapy but with no luck. We’ve been told that he is too told for speech therapy and that Medicaid won’t approve it anyway because he gets speech therapy in school. He has gotten an IPad from our OCDD with communication apps, but he doesn’t care for it. He doesn’t like using it for some reason.
Joel gets so upset with us when we can’t understand him sometimes and it breaks my heart. Other times he is so patient and will repeat himself a million times. At times, he’d get so frustrated that he’d get violent and throw things or hit people or himself. It easy to get mad at him when that happens but we have to remember that this behavior is communication. He can’t get out what he’s trying to communicate so it comes out in different ways because he doesn’t know what else to do to get us to understand.
Patience is key, and I don’t always have it. For that I’m sorry Joel.
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.
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!
If you don’t know him personally, let me give you some insight. Joel is considered non-verbal. This causes a lot of frustration with him. There have been times that he’s gotten violent.
Not all days are good days.
He is the source of most of my happiness and love but he also has the power to break my heart at times. He’s physically hurt me before but he’s worth all the struggles.
I love my boy. He’s a wonder.
He can spend all afternoon in his room talking to the wall and get so mad if someone interrupts. I want to know what he’s saying, what he’s sharing, what he’s thinking. I know he has a lot to say but I’ll never know.
There are times where he randomly grabs my hand and smiles so sweetly.
Not all days are bad.
There are days where he doesn’t want me around but there are days where he’s too clingy waiting for me outside the bathroom door while yelling my name constantly.
Or when I’ve left the house without him and he’ll start FaceTiming me nonstop to the point where I can’t use my phone.
He makes my life a wonderfully fun (at times stressful) journey. Forever thanking God he made me your sister.
I love my boy. He’s a wonder.
The way we speak says a lot, whether we realize it or not. Especially when we speak to individuals 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, so we should be able to decipher what is appropriate and what is not. In order to be sure that what we say and how we say is appropriate, here are a few tips and recommendations to keep in mind when speaking to people with disabilities.
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. The word “retarded” really gets me! The diagnosis of a person is not the most important characteristic of a person. We do not go around introducing ourselves as, “Hello, I’m diabetic Joe.” So why would we do the same to a person with any kind of disability? They are people first, not their diagnosis. I’ve mentioned before on my post, Respect. In that post, I write about being respectful as in speaking respectfully and respecting the way others choose to speak. But overall I still believe in People First Language.
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 my younger brother who has Down Syndrome. I know they say this with good intentions; they are not trying to be rude and ignorant but things like that are not acceptable to say. My brother lives a very happy and productive life, and nothing about that is sad.
When speaking to people with disabilities, it is important to remember that they deserve to be treated as an equal. 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 sometimes it can be frustrating to constantly repeat yourself, but try not to let that show.
They are not oblivious to the difference in your tone when you speak, so be mindful of the tones you use and the reactions you give after they respond. In my brother’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 to remember is to use appropriate language that they will understand; don’t use jargon, difficult words, or figure of speeches. Understand that sometimes it takes time for them to trust others. Everyone is different and not everyone will react the same way. The difficulties of one is not the same for all. The important thing to take away from this is that they are people first, and we need to respect that.
More information and tips can be found at:
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…
This will obviously be a more religious post. and For reference when you are reading we are nondenominational Christians who lean more on the on the Pentecostal side sort of.
This question always gets me thinking. I honestly don’t know if he knows. I’ve asked him a million times and sometimes he says yeah and other times he doesn’t answer. I know he enjoys worship at church, although there are times when he just sits and fidgets with anything. There have been times where we’ve found him dancing alone in the bathroom to worship music but then again he also does the same to any pop song he likes. So the question is he worshipping or does he just like to dance to music? Probably both… Idk
Okay, I don’t know what Santa Cena is in English. Eucharist? Last Supper? Communion? I looked it up but I got confused. Idk but ya the thing you do at church when you when you eat the bread and drink wine. Well, my dad always gets Joel his share of the goods (bread and wine) but one time, one of our pastors (we’ll call Papa Bear) gave us a whole list of people who shouldn’t take it. He said children and people who have not been born again/ baptized and people who are not aware of what they are doing. Well, Joel hasn’t been baptized so my dad felt like he shouldn’t give him some. Joel noticed and got mad that he didn’t get to participate My mom and I talked to Papa bear’s wife and she disagreed with her husband and said Joel is a special case and he should get to participate but that he should get baptized soon if he understands what he is doing. She said since I know him best I should talk to him about Jesus and see if he understands baptism.
Well, that’s a lot of pressure! I don’t know if I will be able to do that. I feel like a lot of time he just nods or smiles at me when he doesn’t know what I’m saying.
On the contrary, our main pastor was much more chill and never has been opposed to having Joel participate. But this is something I do want to clear up with them eventually. Becuase otherwise it feels like we are treating Joel as a perpetual child and I don’t like that. We just can’t tell what he knows and what he understands. I know he gets a lot of stuff but when it comes to this I can’t tell at all.
My dad still lets Joel participate but I think we should be trying to get Joel baptized at some point. I might be overthinking all of this. Actually yes I am. Papa Bear really got me questioning everything.
My dad and I are pretty sure Joel had an encounter with Jesus a few weeks ago. Although some people do not think so.
So…. we were at a special worship/prayer meeting on a Friday with our sister church. Joel was standing and drumming along to songs with his hands on the seat as he usually does. Out of nowhere, he started crying. He was crying like he hasn’t cried in a while. There were legit tears streaming down and he was sniffling. This went on for almost the rest of the service. There was no explanation for it, it just happened out of nowhere. Everyone asked us what happened and why he was so sad. Did he get hurt? Did someone tell him something? Nope! nothing visible happened. Joel couldn’t tell me why he was crying but I choose to believe it was Jesus.
so I guess this is the confirmation I was looking for?
I choose to believe that God loves Joel anyhow and it might not matter whether he’s baptized or not.
I recently got some books on teaching people with intellectual disabilities about Jesus and what not so hopefully I’ll learn something. I know some churches have special programs I just don’t know any churches from my religion does this. We have taken Joel to special services at an Episcopalian church because they do a very cool summer camp. I have thought about starting a group for Joel and people like him but it’s a lot of work and I don’t feel ready. Maybe one day…
Does anyone have suggestions?
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!
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.