Our boy has struggled with hyperthyroidism and pre-diabetes. This means that he really needs to watch what he eats. But he doesn’t understand that. This has led to many fights with him (sometimes he gets physical) because in his eyes, us denying him food is just mean. It is so hard to make him eat healthy or to make him stop eating.
We haven’t been successful with the eating part but we have been sort of successful in getting him active. I mentioned in previous blogs, Joel now rides a bike. We tried taking him regularly to the park to ride his bike but he can’t really do cold weather. He has been sick for the past 3 weeks. Around this time every year he gets a really bad cough due to his asthma. Periodically the cough will get worse and cause him to throw up and what not.
But back to my point. Joel has gotten busy with sports. If you follow us on Instagram, you’ll see his weekly sports and stuff he’s involved in. This has been quite a semester, he had Special Olympics Basketball, Swimming, and Football, then he also had Miracle League Baseball and Crossfit. We tried to keep him busy and now things have slowed down. Which is good for me cus I needed a break. At one point he something going on everyday. Seems like more than it actually was because some weren’t weekly and some lasted a short time.
Since being active, Joel is no longer pre-diabetic. WOOHOO! But he still isn’t where he should be but we’re working on it. Unfortunately, this booger does not listen to us will not work out with us. For some reason, he will only listen to strangers or basically anyone that doesn’t live with him.
Well that’s all.
Don’t let Joel’s grumpy face fool you, he was just confused and sleepy from his car nap. (It was an hour long drive)
A couple of weeks ago we went to the Magical Dance Party hosted by Upside Downs. It was a great time and I’ve been wanting to share about it and I don’t know what took me so long but here it is!
Upside Downs is an amazing organization that I recently found out about. I don’t remember how I came across them, but most likely it was through work. I have fallen in love with them. What honestly drew me to them was that I saw that my all time favorite celebrity, John Tucker from Born This Way was going to be at the party. I️ immediately got too excited…
So, I️ want to brag about this organization for a bit. Upside Downs Mission Statement is:
“Upside Downs, Inc. is a nonprofit, tax-exempt 501(c)(3) organization committed to helping the Down syndrome community through new parent support, recreational activities, raising awareness and advocating for a brighter future. We are a local affiliate of the National Down Syndrome Society and the National Down Syndrome Congress. Our goal is to promote the “Upside” and positive aspects of Down syndrome and further our belief that Anything is possible with Down syndrome.”
They are doing all kinds of things for people with Down syndrome and they’ve won my heart. They provide new families with gift baskets and kind words. They do amazing free events like one we went to, not only do they do that but at this party, every single guest with Down syndrome wins a prize. (Joel won tickets to see the Saints. It was his very first game) they also do a lot with self advocates. They are super great and I️ encourage families to look them up!
Joel had such a fun night. He literally danced as much as he wanted and was super sweaty. His favorite person there that night was Elsa! Here’s what Joel’s night looked like:
See! Joel had fun! It was a great night, thanks Upside Downs😊
My family had a recent disturbing incident. At this point I don’t care if I offend anyone but I still won’t use real names. I have a family member with autism, we’ll call her Sophia the First. If you don’t know my family, most of us are very religious. I love God and try my best to live my life in a positive way that I feel the bible has taught me. Not everyone that follows a religion, follows it the same way. With this said, here’s the situation…
Some people in my family that we’ll call Hydras, decided it was appropriate to pray over Sophia the First. Now prayers are always welcomed but not in the context that they did it. It was outrageous and hateful in my opinion. Hydra’s prayers were to cast out demons in Sophia the First. This was so disgusting. Demons?!? Really are we back in the old times were everyone who was different was evil? I really do not get how the Hydras thought they were doing the right thing. In what brain does that action register as okay.
When I was told about this incident, I didn’t say anything because I didn’t know what to say and I didn’t want to say the wrong thing. I told no one about it until 2 days later when I told my boyfriend and sister. I usually them everything right away but I guess I just didn’t want to think about this. I seriously couldn’t comprehend the actions of Hydra. At this point, I’m so sickened by this, I don’t want to see Hydra.
This situation brought up some past grudges my mom had with other Hydras in the family. She opened up to me and another family member of a similar situation that happened to her when Joel was born. Joel’s diagnosis came at his birth. No one was expecting it but that is no excuse for Hydra’s comments.
Hydra told my mom that she had to have been living in sin because children like that are not from God. God doesn’t give children like that. Hydra told my mom to pray for it to go away. My mom said she never told anyone about it and even though it bothered her and it was definitely not something a new mom to a child with a disability wants to hear, she pretended Hydra never said that. For the record, Joel is the greatest gift on this planet.
Religion is great, I love being a christian, but it was a weird effect on some people. I don’t understand why people would use God as an excuse to act so ridiculous and dangerous. We’ve seen it all through out history and it seems like those days are past us and then things like this happen.
Working in the field that I do, I have come across families that have had similar situations or that they themselves feel like God will take away a disability. I’ve even had people call that are in denial and think their child needs healing and some that use very harsh and ugly words to describe their child. But it felt so much more hurtful when it happened in my family. I do believe in healing but I believe you can’t heal someone from something that they are, something that’s a part of them.
I know everyone interprets the bible differently and everyone has the right to believe what they choose to, but don’t try to force it on someone else and don’t go around believing that you are right over everyone else. I just don’t believe people with disabilities have demons and I think it’s completely inappropriate to try to exorcise demons from them.
Its more important to love and accept each other’s differences and abilities. I know I can’t change the way some people think and arguing with them can most likely make it worse. So, I’ll hold on to peace.
If you’re here you probably know what down syndrome is but I thought I would explain a little about autism. I got a request to clear some things up so here some information I often share with families with new diagnosis of autism. If you google autism, chances are you are going to find a lot of wrong and down right scary information. Take a look below.
When people refer to “Autism” today, they are usually talking about Autism Spectrum Disorders (ASD), which is a brain-based disorder characterized by social-communication challenges and restricted repetitive behaviors, activities, and interests. The Centers for Disease Control describes ASDs as: “a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”
There is no known single cause for autism, although the best available science points to important genetic components. Through twin studies, scientists have determined that autism is a genetically based condition. If one identical twin has autism then there is an 36-95% chance that the other twin will also be diagnosed with an autism spectrum disorder. For non-identical twins the chance is about 0-31% that both twins will develop autism spectrum disorder. The chance that siblings will both be affected by ASD is also about 2-18%.
Scientists are unsure what, if any, environmental triggers may be involved in autism. One theory, popular in the late 1990’s and early 2000’s, that vaccines cause autism, has since been disproven by numerous studies conducted around the world.
Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include repetitive motor behaviors (hand flapping, body rocking), insistence on sameness, resistance to change and, in some cases, aggression or self-injury. Many individuals with an autism spectrum disorder have significant cognitive impairments, although some have typical or even above average IQs. 30-50% of people with autism also have seizures.
In 2016, the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) reported that approximately 1 in 68 children in the United States has been identified with an Autism Spectrum Disorder (ASD). This rate remains the same as in 2014, which is the first time it has not risen. However, with respect to older data, this new estimate is roughly 30 percent higher than the previous estimate of 1 in 88 children reported in 2012. In the 1980s autism prevalence was reported as 1 in 10,000. In the nineties, prevalence was 1 in 2500 and later 1 in 1000.
It is problematic to compare autism rates over the last three decades, as the diagnostic criteria for autism have changed with each revision of the Diagnostic and Statistical Manual (DSM), which outlines which symptoms meet the criteria for an ASD diagnosis. In 1983 the DSM did not recognize PDD-NOS or Asperger’s syndrome, and the criteria for autistic disorder (AD) were more restrictive. The previous edition of the DSM, DSM-IV, included autistic disorder, childhood disintegrative disorder, PDD-NOS, and Asperger’s Syndrome. Due to inconsistencies in diagnosis and how much we are still learning about autism, the most recent DSM only has one diagnosis, autism spectrum disorder (ASD), which encompasses each of the previous four disorders. — this gives us reason to believe that autism is not really on the rise, it just means we’ve gotten better at identifying the disorder. It may have increased some but not as much as people are often led to believe.
ASDs continue to be almost 5 times more common among boys (1 in 42) than among girls (1 in 189) and they are reported in all racial, ethnic, and socioeconomic groups.
All of this information was taken from: Autism Science Foundation
I know this was a lot of science talk and what not. Let me know if you need more clarification or help understanding. Check out our Resources tab if you need more resources for a loved one with autism or other disabilities.
For today’s post, I decided to share a story of two of the most incredible people I know., Matthew and Joseph! This picture was taken over the summer when they presented a training on self-advocacy with me. Here’s the video if you’re curious: Guichard Twins Self-Advocacy Video
Below is a Facebook post from their wonderful momma! I hope this story touches your heart as much as it touched mine.
“Joseph and Matthew participated in the Louisiana Special Olympics Winter Games March 7-9, 2014 which were held in Baton Rouge. When the Games concluded and we were checking out of our hotel, the boys started with the “I’m hungry” talk. They chose to eat at The Golden Corral in Baton Rouge. We were seated, Joseph beside me, and Matthew across from me.
While we were eating, Matthew quietly wiped his mouth, stood up, and walked past me, away from the food bars. I turned to see where he was going. What I saw scared and stunned me. He was behind a lady, his arms wrapped around her waist, giving her the Heimlich Maneuver. I immediately jumped up and saw the lady spit up liquid and a piece of meat. She said, “I can breathe!”
The whole side of the restaurant started clapping, so Joseph and Matthew were jumping around, fist bumping and hugging the people in the area. The lady, the others at her table, and I were all crying. We asked him how he knew how to do the Heimlich Maneuver. Matthew said he learned it on You Tube.
We finished eating and came home, talking about Matthew saving that lady’s life, that he was a hero.
It occurred to me this morning that I hadn’t even thought of Joseph, or what he could have been doing while all this was happening. I asked him while they were eating breakfast. Joseph told me, “I was praying.”
Joseph is a hero, too.
…Down Syndrome is not some ominous diagnosis to be avoided or eliminated. People with Down Syndrome are wonderful, wise, brave, and loving, and they contribute greatly to this world. With a restaurant filled with people, it took a young man with Down Syndrome to stepin and perform the Heimlich Maneuver on a stranger most likely preventing her demise, while his brother looked on and prayed. I am thankful that we were there at that moment, doing what people with and without Down Syndrome do, helping one another. And I just have to add, I am so blessed to be their Mom!”
These boys are truly the best! I’m so privileged to know them.
I wrote this post last year on Facebook because it was heavy on my heart. I started it off like this, “In honor of Down Syndrome Awareness Month I am making this post because I love someone with Down syndrome and I feel the need to share this. Please tell me again how police brutality isn’t a thing. ( I know not all cops are bad, I know)” And I posted this picture.
These words and this topic is still heavy on my heart. Police brutality in general. Writing this wasn’t easy and I know this pictures and their stories are tough, but I think it’s important to talk about it.
This is Ethan. He died over a movie ticket at the hands of police. He really loved the movie Zero Dark Dirty and refused to leave the theater for the next showing because he didn’t understand that he needed to buy another ticket. The cops came in and weren’t patient, got forceful and violent with him. Pinned him to the ground and handcuffed him in the process his trachea was fractured and he died of asphyxiation. They tried to blame it on the paramedic that tried to safe his life.
This is Gilberto, he was walking home when police noticed a bulge on his side ( his colostomy bag) and found it necessary to beat him, handcuff him, and rip off his colostomy bag. Claims they didn’t know he had Down syndrome and thought it was a gun…. really?? One of the cops said that he was not a doctor, therefore he could not have known. Were they blind or deaf?? First off you can see it in his face and second you can hear it in his voice. Yeah he tried to run but come on… he was scared and didn’t understand.
This is Antonio’s father protesting for justice for what was done to his son. Antonio was walking to his parents bakery when also stopped by police, pepper sprayed, beaten, and handcuffed. Why? He had a Hoodie on and looked “suspicious” since they were answering a call about domestic violence. Once again when they stopped him, couldn’t they see it? Couldn’t they hear it?
This is Jeremy who took his moms van out for a ride and his mother trusted the police to bring him home safe. Instead the police that responded to the call ended up shooting at him 3 times nearly killing him. He lied about the threat to his life as seen in the traffic cam video.
This is Juan. He was also walking home when police were responding to a call about robbery and the suspect they were looking for was white and 5’8 when they spotted Juan who is obviously Hispanic has Down syndrome and is 4’11. When he saw the police he began to run home and as soon as he reached his parents in the driveway and hugged his mom the police pulled him away from her tackles him to the ground and as his parents were trying to defend their son and tell the police that Juan had Down syndrome, they pushed his mom to the ground and yelled horrific racial slurs at them like go back to your country and wetbacks. When they finally got him in the back of the police car they came to the realization that he couldn’t be the suspect and realized him and told his parents they were lucky they didn’t shoot him.
We need better police training and accountability. Down syndrome is not a crime neither does it make someone suspicious.
We need to do our part for our loved ones with disabilities as well. We can introduce them to the local police department and getting cards like the one below. Joel was very excited when he got his in the mail. Mostly because the envelope had his name on it and he never received mail. He showed it to everyone in the house. I do see complications in Joel’s case because he won’t be able to verbalize that he is reaching for his wallet or card if he is every stopped by police, it’s something we’ll have to work on. But we’re one step closer to being safer.
I found a non profit based in Florida that creates and sends people with disability a card to help them interact with police and first responders for free!
Stay safe and educated! Happy Down Syndrome Awareness Month!
Family is supposed to be your biggest support system, but I have found that this is only somewhat true. Family is weird at times. Ya know, families fight and stuff but they also love each other. It is very much love/hate I think. My family is pretty distant now for the most part and I don’t really know why. Some are very supportive and loving but have also found that some of Joel’s biggest supporters aren’t family.
Example: The picture above is of a family that is basically family. Joel completely loves them and they love him. They are great and I’m so thankful for them. My actual family is distant as I mentioned earlier. A lot of them are great and show love and support for Joel in many ways. But I would like to share an example of one of the time family has not been that great to Joel:
I remember years ago when Joel was maybe about 8 or 9, he was obsessed with his cars. He would always line them all over the house. He knew every time one was moved or missing. Well, some of my cousins came over while Joel’s cars were everywhere and the younger of the bunch that came over was maybe 6-7ish, who we’ll call Rafiki. Well Rafiki ended up taking one of Joel’s cars, ya know, like little boys do. So this led to Joel getting very upset and pointing to Rafiki and then pointing to a car and then pointing to his pocket. (Because Joel couldn’t communicate.) If I remember correctly this led to the moms being tense with each other but they didn’t actually fight. But what I do remember is that my cousins took the situation personal. One of them, who we’ll call Simba, came up to me few days later and flat out said that they didn’t like Joel or my mom anymore. Simba was upset that Joel made such a big deal about the car and he should’ve behaved better because Rafiki was younger.
I remember being shocked and upset but I didn’t say anything. I thought to myself don’t they get it? Joel is different, I was sure they should have known and understanded. Well families fight and get over it all the time, eventually everything was cool. I have a handful of family members that are actually there for Joel and others who are not so much. And that’s okay. Family isn’t always people who are blood related and I’m grateful for the family Joel and I have.
This post is a bit cheesy! Sorry!
I love you so much. You came into my life when I was five years old. I remember being so excited that you were born and I would tell everyone that my mom just had a baby. I didn’t find out that you had Down syndrome until a long time from then. No one ever explained it to me and I don’t even remember how I found out. I know I was around 10 when my sister and I found out about Down syndrome and she took it harder and than me, which could’ve been avoided if someone would’ve explained it to us.
I do not think that you know the effect you have on my life. Everything that I do is literally for you. College and taking care of you was hard. I had to skip class a lot to be with you (and for mom) for medical appointments and stuff. But the struggle was always worth it. You have taught me so me so much. If it weren’t for you I would never be working in the disability community like I’m now.
Joel, you have shaped me to be patient.(even though I can still lose my temper.) You have shaped me into a stronger person. There have been times that you have broken my heart and tested your limits, but love always remains. You have shaped me to be the person I am today.
You have brought so much happiness to my life. Life with you is fun and full of adventures. I love taking you to new places and watching you explore. I love seeing you interact with people and try to hold conversations. You are so friendly and kind to the people you come across. (Especially babies and girls.) I love how you always try to use chop sticks even though you can’t. I love to see you progress in your speech and in other skills. I above all, I just love you! I will continue to fight for you and care for you forever. You are the best part of life. Being your sister is my favorite role in life.
Happy Down Syndrome Awareness Month!
I’m not sure when we started noticing Joel’s vitiligo but at first, we thought getting it treated was a good idea. I think it was just easier too when he was younger and the white spots weren’t so spread out. When we first started to get him treated he was probably around 10 years old and he did not have as much as he has now. We did see progress but after a few months (or a year or a two, I can’t remember) we stopped going because the dermatologist stopped accepting medicaid. After a few months of no treatment it started coming back in places where his skin color had returned and it was getting bigger. We finally found another dermatologist that accepted medicaid and we started treatment there. Things were okay at first…
The more we went in for treatment, which was twice a week, the more we felt like we should stop. There wasn’t much improvement at all. As he got older, the white spots only increased. Another thing about him getting older was that he hit puberty. Something I should mention is that his white spots reached all over… including his ya know… manly hood. This caused the nurses that treated him to get a little comfortable and that was completely okay with us. We honestly didn’t expect them to treat him there. They were normally very professional and most would not treat that area but get close enoughish and do the rest of his body including his booty. Typically he had the same three nurses and they were very friendly with him. Even though things were okay, we felt like it was pointless and maybe we should stop.
The point of no return was when he began to be seen by a different nurse, we’ll call Popeye. Popeye was very nice and I’m sure had the best intentions but it didn’t work out. Popeye’s methods were different from the other nurses. You see, the chemical/ ointment/whatever the thing was that they rubbed on Joel’s body for his treatment was sort of oily and had a certain type texture that made it hard to come off with water. It was usually very easy to just wipe it off with a dry towel. But Popeye insisted on using wet towels which sort of just spread it out and and it made stay us they even longer while he cleaned Joel up. Also Popeye did every part of Joel’s body that had white spots. Which is a good thing, Popeye proved to be a great nurse that why. But for Joel, I could tell this was embarrassing. By this point Joel is in his mid teen years and this is very awkward for him. After this, we probably went like 2-3 more times and finally quit.
Reasons to quite:
So we quit and things are fine. Honestly, who cares that Joel has white spots? I’ll ya who…KIDS! But they are so cute with their questions and concerns about it. I’ll give two examples of kids reacting to Joel’s skin.
So uhhhhh… the end. That’s my story of Joel and vitiligo. Learning to accept and embrace his skin.
I struggled with writing this but it’s something I want to get off my chest. I have written about it in a small capacity in other posts but I think it’s time to dedicate a whole post on the subject.
I want to share a story about what someone said that happened at church of all places. I’m going to call this person Squidward. Squidward was on stage talking about the bravery of a man in our congregation because of he has a daughter with a disability. The way he described this girl was so inappropriate and disgusting. He repeatedly said she was all twisted up and looked like a monster. He actually said the word monster more than once. It was so hard for me to even type that sentence. Squidward felt good about himself for bragging about the bravery of this man. so he’s brave for loving and caring for his daughter? I get that some people are horrible and leave when they have disabled child. But why praise and call someone brave for doing what any father should. It’s like someone calling me brave for taking care of my brother. I don’t get it. He would not have called him brave if it were a typical family.
Let’s go back to him calling this girl a monster. WHAT?!? How did he think that was okay? First of all, she is not all twisted up and deformed. She does have motor skills complications among other things but his description was wrong. But this a common thing for Hispanic people in my experience. Not all Hispanics or just not everyone in general knows how to speak about disability. The number of times I have heard the word deformed when it shouldn’t used is ridiculous. When a family member, we’ll call Mike Wazowski, of mines came to visit from the motherland (El Salvador) a couple of years ago, Mike Wazowski, took one look at Joel and said. “God is good, he is not as deformed as before.” When was he ever deformed!?! Mike Wazowski! When?!? Because I never knew he had deformities…
(I do not mean this as an insult to anyone who does have deformities, it’s very common. I just mean that if someone doesn’t have a deformity, then why say that they do?) If you do not understand the disability that someone has, I think most would prefer you ask rather than just assume and say something completely wrong.
I know I’ve mentioned instances where family members refer to Joel as “pobrecito” meaning poor thing. I hate that. I shared about when I finally told my aunt and mom not to refer to people as pobrecito and they just made fun of me for saying that not to mention how rude of me it was to correct them. A situation recently occurred where my mom used that word when we were driving and saw a someone trip. We both laughed because who doesn’t like a good random fall. Well she called the guy pobrecito then said, ” yeah yeah, I know don’t say that.” I had to explain to her again that I just meant that I didn’t like her calling people with disabilities poor thing just because they have a disability. She then acted like this was the biggest revelation of her life and said that I should have been explained that to her. Okay mom. Okay.
Just like in any culture, not everyone is the same. There are many hispanics (and people in general) that are amazing with Joel and I appreciate y’all!
Also, I feel like I need to add that my mom is great with Joel and loves him dearly. She cares for him with a lot of patience and attentiveness. There’s just things that she says/does because of the way she grew up that I don’t agree with. And I’m sure she doesn’t agree with everything I say and do. Oh well!
On Sunday, Joel had his triathlon with Oschner hospital of New Orleans and he had so much fun. That morning though, he gave us such a hard to time leaving the house. He would not get out of bed, so I had to forcefully dress him. Then he just would not come downstairs because he just had to finish is routine. (Dancing to YouTube videos and scrolling through Instagram.) We tried giving him his breakfast to eat in the car because we were running late and he refused; he sat down at the table to eat it… very slowly.
We get there at a good time despite Joel’ s efforts. The first course was swimming. Swimming is Joel’s favorite and he was so excited. He had the cutest smile the whole time. He started very quickly and was ahead but he lost his speed after the first lap. He was still very happy and enjoyed it.
The second was the bike course. As many of you know, Joel has only recently learned to ride a bike. He had been pretty good on his own and only need help getting starting. So for the triathlon, Joel started really good and very quickly. His buddies weren’t ready and had to run after him. But for some reason Joel lost his balance and crashed into the gate. After that his buddies wouldn’t let go of the bike, which slowed him down a lot. I know they were trying to keep him safe and they don’t know how Joel usually does. But that course took FOREVER! He still had lots of fun and we were later told that the whole time he was burping and poking his buddies and laughing the whole time.
The final course was the running part. I know Joel does not like to run for long periods of time. So, just like everything else, Joel started fast and eventually ending up walking a lot of the course. Once he saw the finish line, he quickly picked speed and threw his hands in the air. Close to the finish line UNO’s basketball team ( I loved how much they hyped up the kids) joined him yelling and cheering and they all ran into the finish line together. As soon as he crossed the finish line, Joel was met with prizes and a medal.
The whole thing was a lot of fun and Joel had a great experience. I think his favorite part was all the free food, snowballs, and dancing afterwards. Thanks Oschner!
We also started selling handmade soaps to raise funds for Joel’s vocational program for when he finishes high school. All week Joel has been helping my sister and I make home made soaps, candles, and greeting cards. Unfortunately, we live in a state with a never ending waiting list for waivers and because of my family’s language barrier, Joel got on the list pretty late. Making soap has become a way for us to teach Joel some new skills and to start building is funds. Check out our shop under the about tab in the home page.
Joel and I had our first interview and it is published here: Project Open Doors This is an organization that “provides dedicated media coverage and support to the disability sector and change the way the disability community is reported in the media, and perceived by the community at large.”