After a small dispute between my Mom and I a few minutes before, Michael's mood completely turned around. He refused to smile for a picture and his mood didn't improve for another 20 minutes, even though nothing was directed towards him. 

Hello! 

For this week's post, I wanted to include a very important subject that's prominent in Michael's life, and for some others who have Down Syndrome: sensory overload. 

I constantly write and talk about Michael's calm presence, and his annoyance in young, screaming children. What that really stems from is sensory overload.  Our sensory integration system stems from how our senses interpret information from the surrounding environment. This information gets sent to the brain, where it is then processed, organized, and sent as signals to various regions in our body to appropriately respond to the original stimuli. 

With this in mind, we all interpret the world very different. And this couldn't be more true for the Down Syndrome population. Issues with sensory integration can make someone react completely differently to situations. What some may think are behavioral issues, may actually stem from sensory overload.

Not everyone with Down Syndrome may experience this, but for someone like Michael, his body becomes overwhelmed with emotional auditory stimuli. 

Oftentimes, Michael enjoys certain loud sounds. He loves listening to music loudly, and sometimes I'll catch him putting his toy trash-truck up to his ear while it's playing music. 

But start having an argument around him, and it's game-over. Even if rude comments, crying (especially from babies or children), or yelling aren't directed at him, he will take everything personally. He immediately gets upset and starts panicking. He'll often start grunting and whining, and if it's really bad, will start hitting himself in the head. 

Because of this, we're very cautious about bringing Michael to environments where there may be small children. If a baby's crying around Michael, he immediately gets upset, and we have to leave immediately. 

Thus, it's incredibly important to consider how you are behaving around someone who has special needs, and to be understanding of how they may react to your behavior. Not everything may be intended to come off negatively, but may just be a result of an issue with sensory processing. 

Twenty-two years ago, on April 26th, 1996, my mother’s excitement after successfully giving birth to twins dwindled at my father’s words—“Our new baby Michael has Down Syndrome.” Her heart fell immediately. She kept on questioning herself, “why is one child sick and the other healthy?” Little did my mother understand how much of an impact my twin brother, Michael, would have on our family’s lives.

For this week's post, I was asked to share my recommendations on coping with a Down Syndrome Diagnosis. As a heads up, I myself have not experienced having children, or have had to hear a Down Syndrome Diagnosis first-hand. However, I hope that the perspective I share can help other flustered mothers who are still wrapping their heads around their baby's recent diagnosis. Especially for mothers who already have other children, I'm confidently writing this as a reassurance that those kids will be amazing siblings to the baby with DS.  

Growing up, Michael became my best friend and companion. Although he lacks the ability to speak, we would play for hours every day, enjoying each other’s company. I learned acceptance at a very young age—it never bothered me when Michael would cause a commotion while in public, or that he cannot effectively communicate. My parents explained to me what Down Syndrome is and how severely it affected Michael, but I did not mind.

As a child, I still viewed Michael as a normal human being just like everyone else. I never questioned angrily why my brother had to be different. I simply understood. This state of innocence persisted as I grew older, and my love for him grew as well. Michael has easily taught me hard work, responsibility, respect, patience, and much more.

Growing up, I would always tell my parents that I would become a doctor and cure Down Syndrome. Little to my knowledge back then, there was a solution-- abortion. And I cannot be more grateful for my experience growing up with Michael.

As I grew older, I started realizing how essential the Down Syndrome community is for our society. I've constantly asked myself over the past few years after I have created my blog, "What is so important about Down Syndrome?" And it goes more than just the fact that people with Down Syndrome are "happier." Because they're not always happy. Those with Down Syndrome are just like you or me. They experience various emotions, but may just express them differently depending on their communication level.

I continuously seek for the beauty behind Down syndrome and why it's important to keep the DS community. Something that I've fallen in love with is the genuine kindness radiating from these individuals. Although Michael may not be able to speak, he's completely fluent in a more important language-- the language of love. 

Michael demonstrates the same affection to everyone, no matter their race, gender, sexual orientation, religion, etc. And that's more of the attitude that this world needs. I am constantly inspired by the Down Syndrome community in their genuineness towards other people. Michael excels at demonstrating his affection towards others, and I know that he's not alone. Experiencing the world while living with someone like Michael reminds you to fully appreciate what you've been given in life, and to look at people with a more open perspective. 

I have created this blog as a resource for the general community to get a glimpse in the life of someone with Down Syndrome. For mothers who are still coping with their diagnosis, I recommend looking through my blog. And not just at my own blog posts, but the posts that I have shared from others as well. 

In Guest Waves, I have included the stories of others who share how their lives have been impacted by someone in the disability community.

In Other Waves, I have included other incredible websites that share the same goal as us. Each of them have impacted our community through sharing their own beautiful stories, and educating other members who may not be affiliated with our special community. 

Lastly, in Resources, I am continuously seeking various organizations to include that may be of help for other families with loved ones in the special needs community.

As always, thank you for all of the continuous support with our blog. I am forever grateful for not only being blessed with having Michael as a twin my entire life, but for all of you who support our journey as well. Thank you for making our 22nd birthday even more special :)

Hello Everyone!

For this week's post I wanted to talk about how to approach another individual who's part of the differently "abled" community. Since I've grown up with Michael my whole life, it's always been natural for me to approach another individual without hesitation. However, I've noticed that even some of my closest friends struggle with approaching Michael, so thought I'd write about ways to make it easier.

Michael loves to be acknowledged! Even though he's nonverbal, he loves it when others approach him and say hello. He might not communicate back in words, but he will always accept whoever's introducing themselves. If someone waves at him he'll wave back. If someone gives him a high-five, he'll always be down for it, and wait for a fist-bump back (Michael loves those!)

 I know some people get really intimidated and aren't sure what to do, but Michael definitely notices if you ignore him. Others like Michael can tell if you're uneasy and uncomfortable, and there's honestly no reason to be! Even if you don't get a response that you expect, it's always really touching to see any form of effort put in. 

Something I absolutely adore and love about Michael is his kind, loving, nondiscriminatory personality. Michael couldn't care less about your gender, sexual orientation, race, etc. If whoever approaches Michael in a friendly manner, he will always reciprocate back. I continue to be inspired through his language of love, and his behavior towards others is what I find one of the most important aspects about keeping and supporting the Down Syndrome Community. 

If I ever encounter someone in the special needs commuinity, here's what I'll usually say to them:

"Hey I'm Julia! whats your name?" -usually with a handshake or high-five

And It's just as easy as that! Usually if they're with their parent or caretaker, I'll let them know that I've got a twin brother with Down Syndrome, and they're immediately reassured. Honestly, I can't put to words how meaningful it is to me when people come up to me and acknowledge Michael and talk to him... it really does make a difference :)

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Check out the awesome new book written by our friend Dawn from Cedar's Story! 

Hello everyone! Hope all is well. If you haven't seen already, our friends over at Cedar's Story have published a new book. What makes this book even more special, is that it features beautiful photos of children with Down Syndrome!

This makes my heart so so incredibly happy! Books have a large impact on children, especially with their innocence. By providing a book featuring children who look a little different, it allows other children to welcome and love other children who may be different. When I asked Dawn what inspired her to make a book of her own,  her answer was truly uplifting: 

"I was inspired to write the book when I began looking for children's books relating to Down Syndrome. I found just a couple that had actual photos and they were board books. Then I found a number of books describing what Down Syndrome was, but that was not what I wanted. I just wanted books for my son with beautiful pictures of other children who looked like him. I had a series of books when I was a child that showed children having adventures with their farm animals and I loved those books. They were so neat to me because I did not live on a farm so I could imagine myself having all of the same adventures as those children were having. But then I thought, wait, there aren't any books like that for my son, Cedar, that is when I decided to create one."

We are so excited to see the impact that this book may have on changing perceptions about the Down Syndrome community! We especially love that Michael loves looking through the book, and seeing other children that look like him having a blast :) Michael loves reading the same books over and over again, so it's exciting to add another one to his collection! Go ahead and get your own copy with the link below!!

**the link below is an affiliate link, meaning that I receive a small commission if you make a purchase using the link on my page. It won't change the cost of the product, and helps support Beyond the Waves, so thank you!

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Hello everyone, Happy World Down Syndrome Awareness day!

Growing up, it always made sense to me that Michael was a little different. My mom would always tell me that Michael has Down Syndrome and that he would be different from other children, and I simply understood. I understood that Michael may have different needs than other people, that he couldn't talk to me, that he would always need extra attention.

And yet, once I began school at UC San Diego, there were still students who would ask me "what's Down Syndrome?" Three years ago I couldn't believe that someone attending such a high-level institution that had no idea what would result from having an extra chromosome.

I'm forever grateful for that experience, because it made me realize that something needs to change. If a student at my own school wasn't aware of Down Syndrome, then how many others are there out there that have no idea? We need change, not just increasing awareness  regarding Down Syndrome, but to ameliorate the stigma behind the special needs community.

Did you know, that according to the U.S. Center for Disease Control and Prevention, about 67-85% of fetuses in the United States and Europe are aborted after prenatal screening for Down Syndrome? 

In most of these cases, they are due to a lack of understanding regarding the DS community. If it weren't for Michael, I very well too could have had the same outlook. And with that, I created this blog. I'm incredibly humbled and appreciative by all of the support that we have received and the incredible people that we have met.  

I look forward to expanding this blog and allowing other people to get a glimpse of our story. Whenever you're next to Michael, you can immediately feel his calm, loving presence that's far from judgmental. Michael demonstrates the same affection to everyone, no matter their race, gender, sexual orientation, religion, etc. Unless if you're loud and obnoxious (Michael hates noisy things like kids screaming) Michael approaches everyone with the same manner.

Although Michael may not be able to speak, he's completely fluent in a more important language-- the language of love. Michael excels at demonstrating his affection towards others, and I know that he's not alone. Experiencing life while living with someone like Michael reminds you to fully appreciate what you've been given in life, and to look at people with a more open perspective. 

I'm also super excited to announce that the launch of Cedar's Story's new book, Down on the Farm, has been released on Amazon! This beautiful children's book features children with Down Syndrome playing on a farm, and is appropriate for children of all ages. It's an amazing book working on a great cause :) 

As always, thank you so much for reading and feel free to leave any questions or comments, or submit a contact form! :)

Hey everyone,

So I found a promotion on Instagram a couple weeks ago for an ocean-wave night light. I figured it'd be something Michael would like, since he loves to sit in the dark and watch his trash-truck lights go off with the music. I did some snooping on Amazon and found one, and I'm SO excited that I bought it-- Michael absolutely loves it!

Michael really enjoys it since it's so calming and reminds him of the ocean. Below I've listed a couple of pros and cons that I've found, but overall am so happy that I bought it. 

Pros:

• Under $25
• You can control it with a remote
• Has 7 different light color settings
  •  we love using the blue one since it reminds us of the ocean, but there are various options with blue, green, and red
• It also plays music! It has 4 built-in nature sounds, which are all really soothing and Michael really enjoyed them. If you don't want to listen to them, you can just turn the sound off, or connect your own device via aux cord and play your own music!
• It has a self-timer to shut off after 1/2/4 hours, so it's great if you want to use it for your baby before bedtime
• Michael LOVES it! It calms him down so well and he's so mesmerized by it

Cons:

• Not as realistic as I'd hope for. BUT for being under $25, I'm completely blown away by how great this device is! I didn't realize it came with music settings and could have an aux cord plugged into it, so I'm really happy with it
• It's powered by a USB cord
  • as long as you have a power bank, computer, or USB wall charger close by, then it's no big deal

Overall, I'm so thrilled with this purchase, and really excited with the idea behind it. It works out perfectly with Michael, and I'm glad he loves it too. It's a great way for us to bring his love for the ocean a little closer to home.  If you happen to get one as well or have some similar devices, let us know in the comments! :)

Disclosure: The link below is an affiliate link, meaning that I receive a small commission if you make a purchase using that link. It won't change the cost of the item, and helps support Beyond the Waves, so thank you :)

Hello everyone! This blog post is written in honor of finishing my 18-year swimming career. Swimming's been a large part of my life ever since I was 3, almost as much as Michael has been. The sport itself has taught me an incredible amount of time management, teamwork, dedication, balance, and many more. It's a never-ending sport, with practices 6 times a week at 2-2.5 hours each as a child, and 20 hours a week during college. Some would call us insane, but that's just the beauty of the sport. As disheartening as this past season may have been due to various injuries/illnesses, I would still go back and do it again.

Michael and I at my first Collegiate Dual meet at UC San Diego, back in October of 2014.

My Mama and Michael visiting my last home meet as a Triton this past January.

One of the best decisions of my life came through deciding to swim for UC San Diego. The school was a perfect fit-- the team was competitive, the Institution excels in the STEM field, and it was close to home. However, it still came with many challenges. Being a student-athlete is an incredible commitment, with practices counting up to 20 hours per week. Add early 5am morning practices and schoolwork to that load, and not to mention eating and sleeping, you've got little time leftover in the day. But it was still essential for me to see Michael as often as I could. 

Over the past few years, I've grown so proud of Michael. He struggled so much when I first left home almost 4 years ago. Going on trips to the beach really calmed Michael down, and help ground and strengthen our relationship. It was those special moments sitting by the beach that were some of the most meaningful over the years. As you all know, Michael loves the ocean, but he also loves swimming! He would LOVE to visit me at our home dual meets at UC San Diego. My mom said he would always smile when he would see me go up to swim, and he enjoyed watching everyone race. Since we have an outdoor pool it's not as loud, so the loud cheering doesn't bother Michael as much as long as he's by a body of water. 

But, Michael also loves to go swimming! It can be really difficult to find a great time for him to go, since he hates loud noises (so no little kids) and he has such a hard time keeping himself warm. The pictures above are from when I took him swimming back this past Labor Day weekend, and Michael had such a great time! Even though it was over 90 degrees outside he was still shivering, but that didn't bother him at all. I just put a couple of noodles under him, and he just kicks away. He loves getting to splash me and spin around in circles using his legs, so you could guess he's having the time of his life :) 

I haven't yet taught him how to fully swim, since Michael's still not used to blowing bubbles, and just loves to sit on his noodles. Now that I'm done with collegiate swimming, it would be a great time to finally get Michael back into the water again! Either way, we've both always been water babies ever since we were little ;)

Michael and I loved to play in our little pool in our front yard when we were kids. Mama T has impeccable photography timing skills ;)

Hi everyone,

The recent release of a comedy show on Netflix, "Disgraceful," by Tom Segura, has greatly offended and outraged all members of the Down Syndrome community. As someone with a twin brother with Down Syndrome, I cannot simply ignore the hate speech included in the show that was promoted by Netflix. Included below is an excerpt from the show that has insulted many:

                  "You can’t say “retarded” anymore. [audience laughs] It was just here. Don’t you remember? -“Retarded.” That’s how I… -[audience laughs] People get very upset. I don’t really support the arguments against it. When people are like, “You shouldn’t say it.” “Why?” “What if there’s one over there?” And you’re like… [audience laughs] We never said it like that. We were never like, “Look at that guy!” [audience laughs] You didn’t say it like that. You said it to describe an idea, or a situation, you know? If your friend was like, “I’ll pick you up at your house, and then we’ll come back to my place, and later we can go back to your house. And we can get your bags. And then, we’ll come back over here after that.” And your like, “That’s retarded. Why the fuck would we do that?” [audience laughs] But now you can’t say that. Now you’ve gotta be like, “That’s not… smart. Your idea has an extra 21st chromosome, if you ask me.” [audience laughs] It’s not the same."

Dear Tom Segura and Netflix,

I am appalled that this could ever be broadcasted, especially on a popular streaming service like Netflix. I may only be a college student, but I have a sense of humor. And you Tom, haven't just pushed the boundaries of humor, but utterly destroyed it. 

I completely understand that the "r" word slips out unintentionally during a conversation. It's been normalized into our society over the past few decades, but is slowly fading out. Looking at the definition of "retarded" in Merriam-Webster (or any other basic dictionary) reveals a "slow or limited... intellectual or emotional development or academic progress." This has now been altered to replace words like "dumb, stupid, dull, lame, etc" and essentially labels those with intellectual disabilities as having those characteristics.

Clearly, members of the Down Syndrome community (and other members of the special needs community with that) do not fall under such a negative category. While living with Michael my entire life, I have learned more from him than any other intelligent figure could teach me, whether it be a professor, politician, etc. 

But you, Tom, have explicitly targeted the Down Syndrome community, and claim that they are just a dictionary definition. You have justified that its fair to make tasteless, inhumane jokes to belittle others, all in favor of promoting your own image. Your followers have sent hate mail to other members of the Down Syndrome community who are standing up against your public criticism. Rather than accepting that your "extra 21st chromosome" joke was inappropriate and hateful, you continue to spark outrage by attacking those people, like this loving mom to her beautiful daughter.

I cannot simply sit around while this is going about. I need to speak for those without a voice, like my brother Michael. It breaks my heart knowing that there is still a negative prejudice surrounding the Down Syndrome community, due to a lack of education regarding that community. It pains me that you cherish holding your own glory over being a respectful, considerate human being.

What can you do to help?

• There has been an online petition with over 80,000 signatures to remove this show from netflix. You can find the link here: https://www.change.org/p/netflix-take-it-down-netflix
• Message @Netflix about why this show must be taken down, and do so in a respectful manner. 
• Post your own story with a loved one with Down Syndrome over social media. Make sure to include hashtags like #netflix #tomsegura #downwiththeRword #savedownsyndrome and tag various news stations in your area. Again, be respectful, and let's spread love and support to our Down Syndrome community and #spreadthewordtoendtheword!

Hello everyone, hope you're having a great start to 2018 (still can't believe it's already here!).

Here in San Diego we've had one of our worst flu epidemics this year, and unfortunately I also fell victim to it and had to stay away from Michael. Thus, for this week's blog post I wanted to talk about Michael's transition to using technology as a way to communicate. Ever since I've left for school, we've always been working on alleviating Michael's stress over being away from me. As many of us aren't very favorable of change, Michael is the same way, but expresses it even more than we do. He was especially confused and hurt to see me stop by home last week after going to the doctors, without approaching him. As much as my mom or I would try to explain to Michael why I had to stay away from him, he was clearly upset with me avoiding him. Either way, that didn't stop him from showing me a smile the next day while we were video chatting :) 

When I first left home to attend school at UCSD, Michael really struggled with accustoming to having me away from home the first year. Three years later he's been doing better, but I look forward to finding ways to make it easier for Michael. That first year Michael learned to adjust communicating from the phone, but we've transitioned to video chatting now. Michael starts off a little shy (or butt hurt that I haven't seen him in a while, who knows), but after a few minutes he'll let out a little smile and express so much happiness.  

Michael definitely prefers in-person contact, but when that's not possible video chatting is the next best thing. Apparently he's been doing great Skyping with our family members from Poland who he hasn't met before, so I'm happy to know that he has been getting used to it. 

As always, if you have any questions/comments/suggestions, feel free to submit a contact form :)