Happy Thanksgiving everyone!!
We're super excited for all of the food and family love, and are wishing you all a great time with your family! For this post, I'd love to share some thanks to those who have had an incredible impact on us the last year.
Most importantly, I am forever thankful for being blessed with having Michael as a twin brother. 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, these 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. When I first attended UCSD, I would tell other students about having a twin brother with Down Syndrome, and some of them would still ask me what Down Syndrome is! For being at such a prestigious school, this really baffled me. It made me realize that there needs to be an increased sense of understanding surrounding the disabled community.
Through sharing Michael’s story, I aspire to not only give others a glimpse into living with a disabled sibling but to also disband the negative connotation surrounding the disabled community. I look forward to inspiring others to live not only their best lives, but to learn, grow, and approach life with the same sense of love and joy that people like my own brother do.
And not to forget how thankful we are to all of you who follow and share our blog! So grateful for the endless support from friends, and for being part of an especially supportive swim team. This past year we have met so many incredible families who have the same mission as us-- to raise awareness and enlighten the image surrounding the special needs community. Go ahead and check some of them out in the Other Stories and Other Sites section of our blog :) I cannot express how grateful I am to be surrounded with so many inspirational souls.
And lastly, I'd love to give thanks to my Mom, for always being incredibly supportive of everything I've been doing, and for constantly spoiling Michael with love. Thank you for being our #1 fan since Day 1 :)
Thanks again for reading! As always, feel free to comment or submit any questions in the contact form :)
Today, October 1st, marks the start of Down Syndrome Awareness Month. For this post, I'd like to take the time to briefly recap this blog's progress, and most importantly thank YOU for taking the time to read through our blog.
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 UCSD, 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. Not just increasing awareness regarding Down Syndrome, but to ameliorate the stigma behind the special needs community. 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.
As always, thank you so much for reading and feel free to leave any questions or comments, or submit a contact form! :)
For this week's post, I thought I'd answer a previous Q&A that I had received a couple months ago, regarding how Michael makes friends. As I've mentioned in previous posts, for the most part Michael is always a sweetheart. Whenever someone waves and says "Hi Michael!" he will always wave back, and if he's in a good mood he'll even shoot you a little smile too :)
Ever since Michael started high school, whenever someone gives him a high-five he'll also have to give them a little fist-bump. One of the student aids taught him and its stuck with him ever since. As for how he interacts with students, he doesn't have too many issues with sitting next to the other students. He usually won't initiate sitting next to other students, and will just let them sit next to him instead. Once it starts getting too noisy or if someone starts bugging Michael too much, that's when he'll start getting upset. He'll start making a lot of wincing faces, pull his own hair, or even push that person away.
As for girls, Michael does get crushes sometimes too! I'll never forget when Michael had a crush on one of the other students back in High School. He would always sit next to her, smile to her, and never look away. It was the sweetest thing! Like Michael, she also couldn't talk and was limited to a wheel chair as well, but she was such a sweetheart and accepted Michael's companionship.
That's it for this week's post! If you ever have any questions, feel free to submit a contact form or comment below :)
I hope everyone had a great 3-day weekend! I ended up taking Michael all for myself on Saturday, and we had a blast! In San Diego it was scorching hot on Saturday, so what better thing to do than go for a swim? Since Michael's so skinny and sensitive to cold, it's been a while since I've taken him for a swim. But he loved it! Since UCSD's pool was empty for a couple hours during a water polo tournament, it was the perfect opportunity to take Michael for a swim with no one else getting in the way.
Michael doesn't know how to swim, but loves splashing around the water anyways! I would take two pool noodles and put them under his armpits while he floats on his back so he could kick around. The two noodles are good enough at supporting him where he can float and kick around as much as he likes! Michael can turn around on his own, but refuses to try and swim on his stomach. Every time I try to flip him over he would try and flip around onto his back. He especially liked walking around our hot tub (UCSD's got the best hot tub in the world if you ask me). Afterwards, we rinsed off and watched part of one of the polo games. Michael's never watched water polo before but he loved it! It was a totally new environment for him, and he handled it really well.
Afterwards, we made some lunch at home and watched some Game of Thrones. Michael loves watching tv shows or movies with action, so he really enjoyed watching GOT. A couple hours later we went on a Costco adventure, and Michael did really well with how chaotic it was. He really hates crowds and noisy areas, but only got upset once! Once we got the stuff we needed, we got dinner at our favorite restaurant, World Curry, and Michael was so happy and full of food.
I can't remember the last time I got to have Michael for an entire day to myself, but will definitely need to be fitting more of those into my schedule in the upcoming months. As always, if you ever have any comments or questions, feel free to fill out a contact form :)
Hello! For this week's post I'm answering a couple of the questions from my last Q&A post! I'll be including the rest in the future, along with other Q&A posts. Thank you to all who asked :)
Q: How old was Michael until we knew how severe his condition was?
Given that children with Down Syndrome develop slower than other children, we didn't really understand the severity of his condition until Michael was about 4 or 5 years old. Since I was growing up alongside Michael, my parents had an easy comparison for Michael's development. While I started walking at 9 months, Michael took his first comfortable steps at age three. Michael didn't start talking until he was about 18 months old, but then his progress began to decline. Since we were 3, Michael hardly says any words. If he's upset or hurt he'll manage to say "Mama," and in High School he would repeat "Hooray!" after someone. Otherwise, Michael is very intelligent, but lacks the ability to communicate vocally or through sign language.
Q: How did Michael learn how to speak when we were growing up?
We would practice everything together, but he would practice the same way that I would. We would watch tv together, especially Sesame Street and Barney, and had a bunch of fun little toys that would teach the alphabet. When we were about 18 months-2 years old, he would repeat small words with us while we were playing, but gradually stopped attempting to speak afterwards. As of today, the only words that I've heard him say are "Mama," "Hooray!" and "Julia." Honestly the one part that I struggle the most with with being Michael's twin is watching him being unable to communicate. You can always tell that he's trying to say something, but doesn't know how to say it. He'll tap you on the shoulder or keep pushing you, but nonetheless won't be able to tell you anything verbally. We do have a very strong connection, and personally I do believe that twins can be a little "telepathic." We understand each other's feelings well, and always enjoy each others presence.
For this week's post, I wanted to talk about how we can travel with Michael. He absolutely loves going on adventures and visiting new places, but the traveling part comes with some challenges. In particular, the hardest thing is taking Michael to the bathroom. Michael used to only be able to go to the bathroom at home and at school, and would hardly ever go anyplace else. This made it really hard when we would travel to Yosemite as kids, since Michael would sometimes manage holding it for 8 hours until we got to the campground. Even after waiting at multiple rest areas, Michael wouldn't go to the bathroom.
Recently he's been doing much better about going to the bathroom outside of his comfort areas, but he's never been on an airplane. Sitting on a plane for hours is miserable enough for us already, but it would be especially difficult for Michael. I honestly have no idea how he would handle sitting in the small seats, or if he would even want to walk into the plane in the first place. There are times where Michael doesn't even want to walk into a new friends house, and we'll have to calm him down for a few minutes until he'll actually want to walk in. There's no telling how he would behave while trying to board a plane with a bunch of passengers. Since he also hates the sound of kids screaming, if a baby was on the flight he'd also have a rough time dealing with that. Michael sometimes doesn't like wearing headphones, so it wouldn't be the most effective option against screaming kids.
With that, I'm not sure if we could ever do a trip to Poland with Michael anytime soon (even though trust me, it's definitely on my bucket list to show him the world), it's a great thing that Michael already lives next to his favorite thing-- the ocean! Maybe one day in the future we can figure something out with him travel farther, but as of now, we'll continue exploring around Southern California while we can :)
It's been a great couple weeks of summer, and so happy to finally get to enjoy some more time with Michael! Michael's finally finishing up with summer school, so that means: more beach trips!
For this week's post, I wanted to write about how Michael is with food. Like the rest of us, he absolutely loves it! He may not be able to tell us what he likes through words, but he definitely shows it! Whenever Michael eats something he likes, he'll scarf it down faster than you've ever seen anyone eat. If he really loves his food he'll be smiling and giggling the entire time he's eating. As for his favorites, its really hard to narrow it down-- Michael loves almost everything! Haha when we were little and ate something I didn't like (I was the really picky eater between the two of us) I would throw my food onto his plate when my parents weren't looking. As for foods that Michael doesn't like, he'll still eat them. If he ever doesn't like something or doesn't feel like eating, he'll take forever to eat it, but he will always finish!
With regards to what he can eat, we need to be really careful with what's on his plate. Until Michael was about 8 years old, he didn't know how to chew. So, most of his food had to be blended so that he wouldn't choke on it. Thus, soups and mashed potatoes were always great, but sometime's he would get his meat and vegetables blended in with them. Even now, we have to cut his food up into smaller pieces so that it's a little easier for him to chew them.
The only restaurant we've ever taken Michael to is World Curry, an amazing Indian restaurant in Pacific Beach. It's very low-key and not too crazy, so a great environment for Michael. And he loves his curry! I'll always end up cutting his veggies into smaller pieces, but he finishes his food so fast and loves it there. We have to be very picky with where we take him to eat, since he's got a sensitive stomach, and definitely cannot eat fast food. Lot of people with Down Syndrome have issues with constipation, so we need to be very careful with what we feed Michael, and need to track his bowel movements.
That's it for this week! If you ever have any questions or comments (or great restaurants in San Diego that Michael would like) please let me know in the comments or submit a contact form :)
I'm finally finished with my 3rd year at UCSD, and am so excited to be able to work more with Michael over the summer! Michael will be doing summer classes for an extra 3 weeks to keep him busy, but he's been having a great time surrounded with a great staff and classmates.
Yesterday, we had the honor of attending Noah Home's Summeriest Concert hosted by the Mulvaney family, and it was so wonderful! Dave Mulvaney had found our blog and invited our family to the event. His daughter, Morgan, is 27 with Cerebral Palsy, and has such a kind, sweet soul. There was plenty of food and people at the event, and Michael had a great time! He usually doesn't attend events with a lot of people, but he handled it really well. He especially loved dancing with the music, and really enjoyed the food. Only thing that he didn't like was listening to the auctioneer at the end, since he was really loud and Michael's never heard a voice like that. Otherwise, we had a great time and met some incredible people while we were there :)
Noah Home's is an incredible organization over in East County, which focuses on giving adults with developmental disabilities a chance to live in a welcoming and loving environment. Dave gave us a little tour around the area, and I was amazed! All of the "houses" were so clean and beautiful inside, and what really surprised me the most was how it really felt like a home. The staff was so friendly and caring, and all of the residents got along together really well. The homes have grown so much, and in the past November, they just opened up one of the first Memory Care homes in the nation. The new Memory Care home provides a 1:2 staff to resident ratio, and incredible technology.
When the time comes in the future where my family may not be able to provide for Michael, we need to keep communities like this in our mind. As of now, Noah Homes has definitely set the bar high! Special thank you to Dave for showing our family around :) You can find their website here:
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 :)
Honestly, people like Michael love to be acknowledged! Even though Michael's nonverbal, he loves it when others approach him and say hello. He might not speak back, but he will wave back and acknowledge you. 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 accept, it's always really touching to see any form of effort put in.
Here's what I'll usually say to someone else:
"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 :)
This post comes a week late, but last Wednesday was Michael's and mine birthday! We're finally 21, and got to celebrate together this past Sunday. We went to dinner at our favorite restaurant, World Curry, and Michael loved the food! We really love World Curry, since the staff is incredibly friendly, the place is mellow, and it has amazing food. Michael doesn't loud crazy hectic environments, so it's the perfect place for him to go. However, he was in an awful mood and didn't want to sit in the restaurant... since he just wanted to be at the beach! Michael loves his time by the water :)
We drove down to the Pacific Beach Pier, and Michael had a great time! Usually when we end up going to the beach he'll ignore me, because he's so mesmerized by watching the water. It takes at least a good half hour before Michael can be comfortable with taking pictures or interacting with me. Even if he doesn't seem too happy, my mom says that Michael's always got the biggest smile on his face, and his mood just brightens up after visiting his favorite environment :)
Overall, I'm forever grateful for being blessed with Michael in my life. He's always been incredible to have as a sibling, and growing up it's been obvious that we've got a strong bond. Michael does an incredible job of teaching not just myself, but others about how important it is to just enjoy life. Nowadays, so many of us stress out over things that don't even matter, and Michael reminds us to find joy in the simple things in life that are all around us.
A little over a month ago, we got the chance to be interviewed for the San Diego Union Tribune, and had a beautifully written article by Tod Leonard about our life story. So incredibly overwhelmed and humbled with his piece, and he did an amazing job describing how Michael's influenced my life while growing up. You can find the link here: www.sandiegouniontribune.com/sports/sd-sp-ucsdswim-20170305-story.html
That's all for this week! As always, if you ever have any questions, comments, or recommendations, always feel free to contact us :)
Michael is my twin brother who was diagnosed with Down Syndrome upon our birth. He is completely non-verbal, but never fails to show his love to everyone. He loves going to the beach and watching the waves, along with going on walks.
Hello! My name is Julia and I am Michael's twin sister. I'm a chocolate loving, busy college student and swim for UCSD.
Michael's Instagram Account: