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 :)

Hi everyone,

Happy New Year, and welcome to our page! 

Michael and I are twins living in our native San Diego. Michael has Down Syndrome, and has lacked the ability to effectively speak ever since we were born. However, that doesn't stop him from  understanding the world around him. Michael is extremely compassionate about those around him, and can easily distinguish between various emotions around him.

I'm currently in my last year of undergrad at UC San Diego studying General Biology. I live off campus but away from home, and it was a really difficult transition for Michael when I moved out. Four years later its much easier for him, thanks to living so close to the beach. He loves calm, peaceful environments, and the beach is perfect! Anytime we're around the ocean Michael loves to stare at the waves passing by. 

Although living with Michael comes with its challenges, every second spent with Michael is always worth it. Even with all of his medical complications due to Down Syndrome (open heart surgery, constipation issues, delayed cognitive skills) Michael constantly uplifts those around him with his fun, loving attitude. 

Michael is currently at a transition program at a local high school, for students with disabilities who just completed high school. During the summer Michael stays at home and enjoys reading, watching tv, going on walks, and especially trips to the beach. 

If you ever have any questions regarding what living with Michael is like, feel free to fill out the contact form provided under the Contact page!