LIGHT

I think all of us in Down Syndrome community know about the whole end of Down syndrome through abortion in Iceland and in other countries. The rate of abortion for babies diagnosed with down syndrome is so high in the U.S as well. In Ohio they may pass a bill making it illegal for mothers to have  abortion for babies diagnosed Down syndrome. Here is a quote I found on a mother’s thoughts on it:

“”This bill sends a very clear message, that some disabilities are more worthy of life than others and that one disability — Down syndrome — is the most worthy,” Jane Gerhardt, a woman whose daughter suffers from Down syndrome, testified Tuesday, according to local reports.”   Ban on DS Abortions

I am not sure how feel about it but I do agree with this mother. But my big issue with this excerpt is that the journalist says that this woman’s daughter “suffers” from Down syndrome. Suffers? Really? I am so tired of people saying things like that. Here’s another article I found when doing some research on Down syndrome:

“Down’s syndrome, also known as trisomy 21, is one of the most common genetic diseases” A “Scientific” Research Site

Down syndrome is not a disease. Down syndrome is not a disease. Down syndrome is not a disease. Down syndrome is not a disease. Down syndrome is not a disease. 

It’s not contagious, people do not suffer from it, it’s not an illness. Although some people with Down syndrome do have other health complications, Down syndrome alone is not a disease. Okay?

During my little research, I found a blog post from one of my favorite people, the Gungors. They have a daughter with Down syndrome and their diagnosis is story  is one that I feel is so important for families to read. I know I am not a parent but many times I feel like Joel’s mama and I get so drawn to these kind of stories. You can read their story here: lucette The bible verses they used for comfort is one that I have read a million times but I never read it the way I did in their blog.  Psalm 139

Here’s our version of these bible verses for my boy Joel:

For you created his inmost being;
    you knit him together in our mother’s womb.
14 I praise you because he is fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15  His frame was not hidden from you
    when he was made in the secret place,
    when he was woven together in the depths of the earth.
16 Your eyes saw his unformed body;
    all the days ordained for him were written in your book
    before one of them came to be.

This I will keep in mind for all the harsh words I hear or read about Down syndrome. When Someone says something ignorant, even when Joel makes mistakes or can’t do certain things, I will remember this Psalm. Joel is perfect, God made no mistake.

In case you don’t know who the Gungors are, they are musicians and here is their song for their daughter Lucette.

“Light”

“Your eyes, they opened And love was spoken The tears came tumbling down Your heart was broken The words were spoken The tears came tumbling down And the blind gained sight As we met our light Oh the joy and fight The gift of life Your hands, the creases Your feet, your breathing You’re mine, you’re perfect light And the blind gained sight As we met our light Oh the joy and fight The gift of life I can’t take my eyes off of you oh my Light I can’t take my eyes off of you”

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Accessibility and Inclusion

Yesterday we went to a playground dedication for New Orleans’ first inclusive and accessible playground! How exciting!  So Drew Brees teamed up with Audubon Nature Institute to open up a new inclusive playground. It was funded and planned out by The Brees Family and The Brees Dream Foundation. The playground has play features for children of all abilities. Yes ALL ABILITIES! My heart so full! They have equipment that is wheelchair accessible including a swing. (check out the video below) They also have equipment for those who have sensory needs and visual impairments.

Chances are if you read my blog, you know the struggles and exclusion of our loved ones with disabilities. A lot of times children with disabilities are not thought of when most playground are put in. The equipment does not accommodate them and most people do not realize that the playgrounds are inaccessible because it is not something they think about. Now Joel could play on a regular playground but as he’s gotten older it’s a little weird bringing out to playgrounds. (Even though I think you’re never too old for playgrounds.) At this playground Joel is welcomed with no stares and judgmental glances. And the equipment is big enough for him too!

Inclusion and accessibility is a bigger issue that still needs to be addressed. Inclusion and accessibility are part of human rights that is constantly overlooked. With ADA, there has been many changes but there are still a lot that needs to be made. The idea that all people should take action to freely, openly accommodate people with disabilities by providing ramps and accessible restrooms and many other things, should not be something people debate in my opinion. One big debate going in New Orleans is whether or not to make our street cars accessible. Some people do not want to update them because their historic background. I guess I get it, but at the same time I don’t. Why won’t these people want everyone to enjoy streetcars by making them accessible. Updated them, in my opinion, won’t make them lose their historic background right?

Anyways…. Everything about the event was great! They had a  smores station, hot chocolate (cus even though it was only like 54 degrees, that’s freezing to us!) They had all kinds of yummy food,  a craft table, free gifts, live music and the kids got to play on the new equipment and meet Drew Brees. It was a great time.

Inclusiveness is so important. Our population gets marginalized and left behind too often… It’s great to see things like this happen. One step closer to universal design in NOLA<3

 

 

 

 

 

 

 

( Where I work :])

Joel’s Health

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.

Upside Downs

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:

 

 

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See! Joel had fun! It was a great night, thanks Upside Downs😊

Religion in my Family and Disability

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.

Addition:

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.

What is autism?

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.”

What causes autism?

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.

Characteristics

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.

Prevalence:

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.

Heroes

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.

 

Police Brutality and Down Syndrome

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. Police

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.

Ethan

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.

http://abcnews.go.com/Health/syndrome-man-movies-ends-morgue/story?id=20046376

Gilberto

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.

https://www.nbcmiami.com/news/local/Man-With-Down-Syndrome-in-Clash-With-Cops-129820353.html

antonio

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?

https://www.nbcsandiego.com/news/local/SDSO-Settlement-Excessive-Force-Deputy-Jeffrey-Guy-Tony-Martinez-Vista-311588001.html

jeremy

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.

https://photographyisnotacrime.com/2016/01/palm-beach-sheriff-settles-for-500000-for-down-syndrome-teen-they-shot-down/

Juan

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.

http://www.cleveland.com/court-justice/index.ssf/2016/12/man_with_down_syndrome_frustra.html

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!

http://www.justdigit.org/wallet-cards/

 

Stay safe and educated! Happy Down Syndrome Awareness Month!

Family

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!

Dear Joel

Dear Joel,

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!

Vitiligo

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:

  • There was no improvements anymore
  • Why not embrace Joel’s skin, it certainly doesn’t bother him
  • The dermatologists visit were becoming extremely burdensome for him

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.

  1. My little cousins started asking questions about Joel and why he’s different. I often forget that Joel has vitiligo so when I get asked this by kids I always assume they are talking about his behavior and speech so I explain Down syndrome. After explained to them about Down syndrome I asked them to repeat what they learned to see if they understood. They did but ended with “and that’s why he is two different colors.” I thought it so funny and cute. Then I had to explain vitiligo…
  2. I wrote a post about Camp Able  before but I didn’t talk about this. There was this kid we’ll call Bugs Bunny and for the sake of the story I have to say he’s white. Bugs Bunny was very sweet and invasive (and that’s okay!) He approached me during the talent show and asked if Joel was my brother. After saying yes, Bugs Bunny was like good because I have a question. I told to ask away and he said, “Is Joel okay? You know he’s got a rash that is turning him white. Soon he’ll look like me. You have to take care of him.” This was soooooo funny to me but I didn’t have the heart to correct him. I just said, “thanks, I will take care of him.”

So uhhhhh… the end. That’s my story of Joel and vitiligo. Learning to accept and embrace his skin.