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As a recent graduate from UC San Diego in General Biology, I have taken an interest in scientific research while working in Rob Knight’s lab for microbiome research. With the various health complications that Michael has experienced while we were growing up, I have fallen in love with medicine, and have future prospects of delving into integrative medicine in the upcoming years.

Through all of these years with Michael in my life, I always asked myself,

“Why  is the Down Syndrome community important? Why do we need to keep individuals who have Down Syndrome in our society?”

After growing up with Michael, it’s the genuine kindness and love that radiates from these individuals that’s what our society needs today. As many other individuals who have DS, Michael expresses love to others in an inclusive manner, and doesn’t care about someone’s appearance, their sexual orientation, their race, or gender. Our world today needs more loving, and individuals who have DS are the prime leaders in this.

But, these individuals are even more important than many realize. They may hold some answers in treating cancer, stroke, and other conditions. And this not only applies to helping the general population.

Rather than “curing” Down Syndrome, I seek to find medical treatments to alleviate symptoms that are co-morbid with Down Syndrome, while providing a means of improved public health recommendations for these individuals. All in order to improve their quality of life.

Just in the 1980’s, the average life expectancy for an individual who has Down Syndrome was around 25 years. Advances in research have helped alleviate symptoms of other diseases that are co-morbid with Down Syndrome, including congenital heart disease, hyperthyroidism, and gastrointestinal problems. Nowadays, these individuals have a life expectancy around the age of 60 and can live more fulfilling lives.

Did you know that individuals who have Down Syndrome are protected from coronary artery disease, hypertension, and most solid tumors, including breast, colon, and skin cancers?

Interestingly enough, scientists have discovered that individuals who have leukemia but do not have Down Syndrome have  a part of the 21st chromosome amplified. This section of the 21st chromosome may carry a “leukemia oncogene,” which is essential for scientists to study. Not only could this alleviate the amount of cases of leukemia seen in Down Syndrome, but this information could also be essential in treating Leukemia among the general public

Joaquin Espinosa, who runs the Espinosa research lab at the University of Colorado Denver, specializes in Down Syndrome and cancer research. His team is currently finding ways to alleviate co-morbidities found with Down Syndrome. He also passionately writes about the importance of including persons who have Down Syndrome into scientific research, as funding for Down Syndrome research is considerably lower than for other conditions.

I am also ecstatic to share that we have created a Down Syndrome cohort in the American Gut Project in our lab! I work in Rob Knight’s lab specializing in microbiome research, and the microbiome of individuals who have Down Syndrome is not well understood. Many of the comorbidities seen in Down Syndrome can be treated, and alleviate some of the symptoms that individuals who have DS may experience.

You can donate to our project here. Any contribution would be greatly appreciated and helps make a difference :)

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Hello everyone!

Hope everyone's been doing great! For today's blog post, I wanted to talk about Michael's progress with his communication skills.



As some of you may know, Michael is non-verbal and can't communicate with words like we do. He has an incredible sense of understanding, and even though he doesn’t form words, he's vocal in the sense of humming or grunting. Regardless, he’s most fluent in the most important language- the language of love.

Since Michael communicates with us without words, it’s essential that he communicates with us through reading our expressions and with a sense of feeling. He is incredibly sensitive (as are my mom and I). For anyone who knows an individual who has Down Syndrome, they’ll know that these individuals have an incredible sense of stubbornness- Michael included.



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Ask or tell him to do something in the wrong tone-- and forget it. He will sit, pout, and do absolutely nothing. If you’re in a rush, let’s say for school, or for a doctor’s appointment, then too bad. If you even dare rush Michael when he wants to move slowly, he’ll move even slower.




This is exactly why we talk to him in a soft manner. He’s incredibly sensitive. He picks up emotions and energies-- how else would be communicate with us without words? We are in no way babying him, as he is capable of doing so many things on his own. But once more, we need to approach him in an appropriate manner that fits his needs.



If he’s sick or not feeling well, we can tell since he’ll seem a little off. He won’t smile, he’ll move really slowly, and in general look upset. If he wants something from us, he’ll usually come up to us on his own, but this doesn’t happen too much. Michael LOVES keeping to his routine, and getting out of routine is incredibly upsetting for him.


As for alternative methods of communicating with us, Michael did have an iPad during high school, with various communication apps. From what I remember Michael was not a fan— if I’m being honest, it really felt like he would just touch anything on the screen so that the iPad would be out of his face.


When I was living outside of home during college, Michael initially disliked talking on the phone, or skyping with me. However, over the past few years he’s really gotten the hang of it.



Video chatting has worked so well with us over the past few years. He loves “chatting” with my aunt from Poland that he’s never met. Especially since she loves talking, Michael is so entranced and enamored by her.



While I was travelling in Europe this past summer, this was an incredible method for us to keep in touch. Although he initially wouldn’t look at me for the first 10 minutes of our calls, when he’d eventually get over being butt hurt he’d be so ecstatic to have a way to communicate. It’s enthralling to hear his giggles and spot his smiles while chatting from so far away.



If you have any questions regarding Michael's communication, feel free to comment below or send in a contact form :)

 Videochatting with Michael when I first landed in Europe… did not go so well.

Videochatting with Michael when I first landed in Europe… did not go so well.

 Videochatting with Michael in Europe a few days later after ~10 minutes… finally got a smile!

Videochatting with Michael in Europe a few days later after ~10 minutes… finally got a smile!


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beyondthewavesblog.com by Julia Toronczak - 3M ago


For all the years I have been running this blog, I just stumbled upon the fact that I never explained the why behind the name and our logo. For those who are just joining our story, or have always been following along, here’s our why.

 

Michael loves the ocean waves. It’s always kept him grounded, especially while I was attending university at UC San Diego. Our transition to living apart 4 years ago was devastating for Michael. Each weekend when he would come and visit with my mom, he was so upset he wouldn’t look at me the first 15 minutes we were together. Once it was time for him to go home, he would always have tears in his eyes. It always broke my heart.

 

It broke my heart, since I had no way of letting him know what was going on. The reason I chose to stay in school in San Diego, was so I could stay close to Michael. He didn’t understand why I wasn’t at home anymore. I didn’t have a way of explaining that I was away studying biology in school, and that it was to prepare for even bigger dreams in the future.

 

But one thing strengthened our bond and kept Michael calm and grounded during our visits-- the ocean waves.

 

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The repetitive motion, their white noise, and the beauty behind them consumed his attention, and made him forget about our situation. The beach became a perfect place to visit, as it was so close to our campus.

 

Yet for those who have swum in the ocean-- you know that waves can be rough. Being caught in a rip current with tall waves can be terrifying, especially if you can’t see the next wave coming.

 

But, if you look at the waves from afar, it’s easy to fall in love with the waves and become entranced with their beauty. And the same goes for growing up with someone who has Down Syndrome.

 

Everyday won’t be easy. Sometimes tough situations or hospitalizations come in waves, with barely any room to simply breathe or relax to take care of yourself. But by looking beyond the waves, I’m blown away by how much Michael has enriched my life. I continue to be blown away by his genuine kindness.

 

I have learned the importance of keeping the Down Syndrome community, and to raise awareness and provide a voice for those who need it.

 

As for our logo, I’ve included three waves, to represent the three 21st chromosomes present in Down Syndrome.

 

 

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Hello!

For this week's post I'll be doing a follow up from last week regarding bilinguality among members in our community. Believe it or not, many of those with IDD (intellectual or developmental disability) can speak or understand multiple languages!

I asked our community if their loved one is also bilingual, and got so many lovely responses! And what's even more incredible, is that some of these individuals can even understand up to four different languages!

It's so inspiring to see other individuals with IDD proving that they're capable of anything. Especially after learning that about 40% of the world population is monolingual! (1) 

Rather they allowing their "disabilities" to hinder them, these individuals instead motivate themselves to accomplish anything they set their mind to. 

You can find the responses from around our community below!

 Desi IMG_4957.PNG

Fluent: English and ASL, with some dabbles in Spanish and Korean

Hannah has been so proud of her sister Desi, and reveals:

"I can't explain the absolute joy and pride it brings me when I get to speak about her accomplishments. When we got her 2 years ago she had no verbal, visual, or body language of any type. She did not even know when to cry. Now today she is so extremely expressive, and with that comes sass beyond compare, but it's all a cherished milestone!" 
Ian

Fluent in: English and Spanish, currently learning ASL

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Ian's mom, Nancy, shares her thoughts regarding her 3 year old son's ability to grasp other languages:

"My husband is a Spanish teacher and has always loved languages. When we started a family, we agreed he would speak to our children exclusively in Spanish. I'll never forget the first time I realized our oldest could understand directives in both languages, around a year old. When we had Ian and he was diagnosed with Down syndrome, I remember we both shared the same fears about what the diagnosis would mean for his life, and chief among those was the concern that Lucas would not be able to continue his Spanish with the kids.
We asked our geneticist about this and he loved the question and dug into it for us. Unfortunately, he found there were no studies regarding the success of dual languages in kids with Down syndrome. He encouraged us to go for it: dual language for typically developed kids only provides benefits, why not for Ian?
I'll never forget when I realized Ian understood directives in both languages, around a year old! And as his verbal expression emerges, it is mirroring his sister's--he chooses to use Spanish words when it is easier or more familiar."
 
Kevin IMG_4964.jpg

Fluent in: English and Spanish, some sign language

His older sister, Karina, shares her perspective regarding his communication ability:

"My little brother Kevin was raised in a bilingual household so he understood both English and Spanish. Because he had trouble expressing himself sometimes verbally he also learned to use some sign language. Therefore, not only would he use English and Spanish words interchangeably but also incorporated signing.
He never ceased to amaze me, such an intelligent individual. He knew to speak to my parents in Spanish and to his siblings and at school in English. Despite some of his limitations with expressive language, he was very well aware of body language and being able to pick up the emotions of how someone was feeling."
Yoel IMG_4965.jpg

Fluent in: Spanish and English, learning ASL

His mother, Michelle, shares with me how she's continually inspired by him:

"I am the mom to an awesome boy who has Ds and who also knows two languages, okay, THREE. He is able to talk both in Spanish, English, and also knows some ASL. I think he’s consider a trilingual. That’s Pretty amazing 🙌🏼"
Andres

Fluent in: English and Spanish 

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"My brother Andres has DS and is non verbal but he understands both English and Spanish perfectly well. Spanish was his first language. He learned English when he was around 7 or 8, when my family moved to the US. He was primarily spoken to in English at school.

At home we mostly speak to our parents in Spanish, so  by default, also to Andres. Even if my siblings are speaking in English to each other, we revert to Spanish to speak to him. Which is silly since he understands both, but we can’t help it!

He loves watching Spanish novelas and fútbol on Univision, his favorite channel (he doesn’t like any other Spanish network), but also loves the original Hulk tv series and anything Whitney Houston (we’ve seen the Bodyguard over 1000 times and listens to her greatest hits album on loop for years 😂).

When we first moved to the US, my mom was advised to stick to only English with Andres, since he is non verbal, but also on the lower functioning end of the DS spectrum. My mom was adamant on him understanding Spanish, since at the time it was her primarily language. It was the only way he would be able to communicate with our family back home, so she stuck with speaking to him in Spanish at home. His English was reinforced at school, therapy and education tv programs.

Many people who first meet Andres are very surprised to learn he understands both languages, especially since he doesn’t speak. When they first meet him and see that we speak to him in Spanish, they assume right away they need to do the same. We tell them to speak to him in whatever language is easiest for them. He will accommodate to them 😉.

 

Something interesting to note- if we trying to get his attention and Andres refuses to cooperate after a few attempts, all we simply to do is repeat it English and he automatically listens! We think it’s because he associates english with school, a stricter environment than at home. It’s crazy, but once we start to speak in English to him, he knows we mean business 😂😂!

 

 

Jaime

Fluent: English, Spanish, Gallego, ASL

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His mother proudly shares:

"Jaime “DeeDee” is 3 years old, and knows English, Spanish, Gallego (a language spoken in Galicia/North-Western Spain) And basic ASL. At first I was nervous that it would be to much for him. Learning 1 language is hard; now throw in a few more and top it off with an intellectual disability. To no surprise he has shown he is capable. I’m proud he’s able to experience our culture and be included."
Tori

Fluent in: English and Spanish

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Her sister, Kelli, proudly shares:


"So my mom is Hispanic and we grew up with her only speaking Spanish to us, but we also understood English. So that was a cool thing, going to the grocery store and my mom asking Tori something in Spanish and her responding in English! I love it because it shows how extraordinary tori is. So many “normal” people struggle to learn languages and my sister with a “disability” seamlessly flows from English to Spanish."
 
Elena 11AE1410-453C-402A-9C83-C16D18825FD1.JPG

Fluent in: Polish, English

Elena's mom, Olga, proudly voices her thoughts regarding Elena's abilities:

"I am bilingual (my mother tongue is Polish) and I always planned on speaking to my children in Polish. We learned about Elena’s diagnosis after she was born, and due to all the limitations the doctors made me aware of, I was hesitant to speak to her in Polish.
Despite everything, I persisted and spoke Polish to Elena. Although she is not speaking yet, she understands both Polish and English and responds back to us using sign language. She has a wide range of vocabulary ( Polish and English) and swiftly shifts from one language to the next.
My daughter has taught me to never underestimate her abilities. She is clever and able to learn multiple languages. Currently she is attending a french daycare."

*Citations

(1) http://ilanguages.org/bilingual.php

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beyondthewavesblog.com by Julia Toronczak - 4M ago
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Hello everyone!

For this week's post I wanted to talk about Michael's bilinguality-- yes, Michael understands two languages! Since my parents are from Poland, we only speak Polish at home. Therefore, Michael can understand a lot of things in both English and Polish. 

Like I've mentioned in earlier posts, Michael has an incredible sense of understanding-- although he may not understand what you're telling him word for word, he can feel the emotions behind the words, and recognize if things are being said out of love, anger, happiness, etc. He may not be able to understand each individual word in both languages, but he can easily sense the emotions coming from them.

In both English and Polish, he understands phrases like "drink water," "go to the bathroom," or "put this away." If we ask him if he's happy or sad in either language, he'll still give similar responses from each language.

He caught on to understanding both languages, since we would repeat phrases twice, once in English, and again in Polish. That way, he grew his understanding of each language. 

Considering that not every person without an intellectual  or developmental disability can speak or understand two languages, it shows that persons with Down Syndrome (or any other intellectual disability) are capable of the same things any other person can do.

And Michael's not alone! I remember a couple of other students in his classroom in high school also understood a couple of languages. Does your child with IDD also know another language? Let us know in the comments!


Now I couldn't say which language Michael understands better, but either way, he has no problems between switching languages. If you have any comments/questions, feel free to submit a comment or submit a contact form :)

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beyondthewavesblog.com by Julia Toronczak - 5M ago

Hey everyone!

I'm so excited to be back from traveling in Europe the last month. A lot of people asked if Michael would ever visit Poland one day, and I really do hope so. A majority of our family lives there, and Michael's got so many relatives that love him and wish to see him one day. 

For this week's post, I wanted to talk about how we travel with Michael. He 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 challenging 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. As for how he would react with turbulence, I'd assume he would start panicking, so it would be in our best interest to consciously sedate him (like many dentists do for kids who are too anxious).

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 taking advantage of our opportunity to explore Southern California :)

 

 Back from an old trip to Yosemite when we were younger 

Back from an old trip to Yosemite when we were younger 

 Facetiming with Michael during my recent trip to Europe-- it was so nice to get a smile out of him! :)

Facetiming with Michael during my recent trip to Europe-- it was so nice to get a smile out of him! :)

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beyondthewavesblog.com by Julia Toronczak - 5M ago

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.

 

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Hello!

 Michael loves to go swimming at the Canyonview Aquatic Center at UC San Diego. It's very calm, clean, and a beautiful facility with the best hot tub you can find. 

Michael loves to go swimming at the Canyonview Aquatic Center at UC San Diego. It's very calm, clean, and a beautiful facility with the best hot tub you can find. 

As a past collegiate swimmer for UC San Diego, swimming has had an immense impact on my life. Michael may love watching the ocean waves, but that boy loves his time in the water. Rather than swimming the strokes, he loves to just get in and kick around on some noodles on his back. We haven't enrolled him into lessons before, but as a past swim instructor, I feel more comfortable taking him swimming. 

 For this week's blog post I'm going to share the perspectives of a couple friends of mine who are influential coaches to special needs children. One of them, Leslie, is a Special Olympic Coach and swim instructor for the St. Madeleine Sophie's Center, who I also had the pleasure of teaching swim lessons with a few years ago. The other, Jaimie, an old teammate of mine from UC San Diego who is the coach for the UC San Diego Special Olympics team. 

I highly recommend enrolling your child in a Special Olympics program, or enrolling in swim lessons at the St. Madeleine Sophie's Center if you are in the San Diego area. The benefits that special needs children receive are incredible. They not only impact their own lives, but the lives of the many coaches and volunteers around them.

Below I've included an interview that I had with Leslie and Jaimie:

1. What do you love most about coaching/teaching adaptive athletes? 

Leslie: I love coaching/teaching adaptive athletes new skills, along with improving their swim skills. 

Jaimie: My favorite part about coaching Special Olympics is the relationships I form with my athletes. There is really something special about coaching these kids. They genuinely work hard and always try to do their best. 

They are also so enthusiastic! Finishing one lap can be a time for celebration. They are so receptive to encouragement and you can physically see the effects that a simple high five can have on their attitude and demeanor. Honestly, every practice is so rewarding and humbling. It's definitely my favorite part of the week because I get to put my energy into coaching where I help build their confidence, improve their swimming, and let them have some fun!


2. What reactions do you usually see from the athletes throughout the season, and how do they react to their improvements


Leslie: I see a lot of different reactions and responses from athletes throughout the season, from frustration to excitement.

J:  My swimmers respond and celebrate immediately after any success, such as completing a lap of a new stroke or learning a new technique. The most joy I see from my swimmers is at our end of our season swim meet. My swimmers can't wait to swim their races! After they swim, they immediately sprint to the award stand to wait for their medals. It's a really awesome experience to witness their pure joy and pride when they display the medal around their necks.


3. How are the athletes like with their teammates?

Leslie: The athletes become close with most of their teammates. They cheer each other on at swim meets, encouraging each other and even hanging out.

Jaimie: My athletes who train together are all friends! They encourage each other while promoting an atmosphere of friendly competition.


4. What would you say to parents who are thinking about signing up their kids for swim lessons/Special Olympics?

Leslie: I would encourage parents to sign their kids up for swim lessons to improve their swim skills. I would also encourage them to participate in Special Olympics where they'll learn to compete as an individual as well as a member of a team.

Jaimie:  I recommend Special Olympics to any parent even considering getting their children involved. There are so many sports to participate in and no previous experience is necessary! Special Olympics encourages athletes of all skill levels. For instance, one of our swimmers who competed at the meet had stepped in a pool for the FIRST TIME just 2 weeks before the competition! Special Olympics really is an incredible experience for everyone including athletes, coaches, and parents.

 At the recent Special Olympics 

At the recent Special Olympics 

 

 

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beyondthewavesblog.com by Julia Toronczak - 6M ago
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This past weekend I had my graduation ceremony at UC San Diego. Michael and my mom joined, and he behaved so well! For being around a large crowd in a new environment, I'm so proud of him for being so patient during the long ceremony.

I'm not sure whether or not Michael understands the concept behind graduation ceremonies. Regardless, my mom said he smiled when she told him that they announced my name. 

For this post, I wanted to reflect upon our high school graduation 4 years ago, where I got to walk with Michael up to the stage.

Michael technically did not "graduate" with a diploma. Instead, he got a certificate for his completion of High School, and did not receive his actual diploma until this June, after finishing up his transition program at our neighboring high school.

Beforehand we were a little worried that Michael would not want to walk up to the stage, and that he would get irritated from all of the noise, but luckily we had our own way of circumnavigating that issue. Our school district had given some of the students with special needs iPads, so that they could communicate in a different manner. Since Michael excels by learning through example, we'd always take videos of how to do things on the iPad, replay them for him, and then he'd easily understand the concept.

After filming how we'd walk onto the stage during graduation practice, Michael initially wasn't looking forward to walking up. However, after watching the videos multiple times the night before, Michael was ready to go. 

Even in the hot San Diego sun, Michael was incredible. He walked with us without any issues, and when the time came to go up on stage, Michael walked through without any issues. 

I'm so proud of Michael and his patience. I continue to be filled with gratitude with his ability to overcome new hurdles outside of his comfort zone. 

 He might have not wanted to show a smile, but I'm so proud that Michael made it onto the stage for graduation :)

He might have not wanted to show a smile, but I'm so proud that Michael made it onto the stage for graduation :)

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Hello!

For this month's Q & A, I'd like to share with you a great question a mother asked regarding how to talk about DS. 

How do you talk about Down Syndrome with people who talk about spectrums, and how do you turn the correct phrasing around for describing how Down Syndrome effects people individually?

Every individual who has Down Syndrome is impacted in various ways.

One of the most important things to remember: either way, that individual is still a person.

Persons who have Down Syndrome are still students, brothers, sisters, children, aunts, uncles, etc, the list goes on. Not everyone who has DS live the same lives, and the symptoms vary from person to person.

Even as someone who's been exposed to the DS community my entire life, I still catch myself with how to correctly and appropriately describe Down Syndrome. I believe your connotation is incredibly important, as the way you describe the community can have an impact on those who have no exposure to it.

Rather than saying "people with Down Syndrome," or "people who suffer with Down Syndrome," use "Persons who have Down Syndrome." This way, you remove the group phrasing, which implies that those who have DS are different from us, and are all grouped as the same. By using persons, it maintains the individuality of each person who has DS. (I myself am still working on this!)

Remember, the wording that you use reflects your feelings for that individual, so stay away from words with negative connotations, like suffer. Those who have Down Syndrome are not suffering, nor are they victims. They are people just like you and me, and can still find and enjoy the beauty in life. 

There's a lot of debate among the special needs community regarding how to phrase the condition with the person. For example, if you Google how to describe someone on the Autistic Spectrum, there are debates between whether "my child is autistic," or "my child has autism" is more appropriate. A great article by Alex, who is on the autism spectrum, states that it's all up to the person.

And it's true. No matter how you refer to someone in the special needs community, it's most important to respect how the individual wants to be referred as. I believe as long as you have a good intention, and are open to accepting and respecting how to talk about a person, then you're doing a great job. Even as Alex alludes, there will be people who are going to be offended no matter what you use. The most important thing to remember is to be respectful and follow the wishes of the person who you are describing.

As for Down Syndrome, I don't mind if you say "with Down Syndrome," or "who has Down Syndrome." As long as you're using positive connotation and dropping anything that's negatively associated, I'm content with whichever. 

Lastly, Down Syndrome is not a spectrum. Each individual who has it is so different.

It's best to describe someone appropriately to their own needs. When I talk about my brother, I let people know that he's a little more on the severe side of Down Syndrome in terms of his communication, as he is nonverbal. I always follow up that even though he's nonverbal, he's excellent at expressing his love and kindness towards others. 

As always, thanks for reading! Remember, please don't shy away from asking any questions-- always better to ask rather than sit in ignorance. And especially when it comes down to how to refer to someone. 

 

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 We got to meet Chopper the Biker Dog! So cool, you can check him out  here . 

We got to meet Chopper the Biker Dog! So cool, you can check him out here

This past weekend, Carlsbad High School hosted the 2018 San Diego Regional Spring Games for Special Olympics Southern California. Our UC San Diego athletic teams volunteered for the event last Saturday, and it was an incredible experience. The athletes were all so inspirational to watch, and all had such great energy.

Special Olympics Southern California enriches the lives of people with intellectual disabilities through sports, health, and leadership programs. Through the power of sports, athletes become more independent, build self-esteem, and live healthier lives. They inspire people to open their hearts and create more accepting and inclusive communities. All Special Olympics programs are free to the athletes and their families. Learn more at www.sosc.org

 Some of the swimmers and one of my favorite coaches, Leslie, from Saint Madeleine Sophie's Center. 

Some of the swimmers and one of my favorite coaches, Leslie, from Saint Madeleine Sophie's Center. 

Our group helped facilitate timing for the swim meet, and I had an incredible time getting to see some old familiar faces! A few years ago I taught swim lessons to children who have special needs at the St. Madeleine Sophie's Center, and it was an amazing experience. It was so humbling getting to watch your own swimmers improve their swimming ability while growing their love for the water. And even better to watch them still enjoying and loving the sport years later!

Michael has yet to participate in some Special Olympics events, but now with college coming to an end I look forward to being able to take him out swimming again. It's a little difficult to get Michael to participate, since he doesn't fully understand the aspect of competition. Michael would much rather enjoy his time in the pool and do his own thing, rather than compete. He's also a pretty slender guy, so I only take him out swimming when it's over 85 degrees out, or else it's too cold for him. Michael love swimming at my home pool at the Canyonview Aquatic Center, since it's so calm and spacious. Not to mention it's got the best hot tub out there (and that's coming from a former collegiate swimmer who's been to a lot of pools!) 

If you ever are interested in volunteering for the Special Olympics, just check out their events page to find when you can help out! Help is always appreciated, and you will have an amazing time too :) 

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You are all beyond wonderful.

Many parents today are overwhelmed upon finding out that their child has Down Syndrome, due to the negative connotation revolving around the genetic disorder. That's why around 90% of mothers who find out that their unborn baby has DS end up getting abortions.

Luckily, my mother didn't experience that technology, nor would she have made such a decision. Although she knew that her life would change forever, she's done an unbelievable job of stepping up and giving Michael the love and support that he needs.

My Mama has done an immense amount of work to taking care of Michael-- from feeding him everyday, getting him ready for school in the morning (which is a HUGE challenge), and many others, she's done an amazing job looking over him and is an incredible inspiration for what she does with Michael.

She's not afraid to take Michael out to let him see the world, and has never shown any evidence of regret for having a child like Michael.

Instead, she proves how much of a blessing it is to have someone as special as my twin brother.

Throughout the time I've had this blog, I have met an incredible number of mothers of little ones with a little something extra. And in them I see the same unique, never-ending love that my Mama also has for Michael. 

I am constantly inspired by the persistence of these mothers in showing the world the beauty of their DS children. These Mamas do an incredible job of raising their children to know that they are fully capable of leaving rich, fulfilling lives. 

To all of my DS Mamas, we love you and continue to be inspired by you. Happy Mothers Day! 

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 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. 

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. 

 

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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 :)

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Hello Everyone!

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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!
IMG_6175.JPGIMG_6176.JPG Down on the Farm By Dawn Alsept
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Hello everyone, Happy World Down Syndrome Awareness day! DSC_0708.JPG

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 :) 

*Disclaimer: 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!

Down on the Farm By Dawn Alsept

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

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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
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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 :)

 

Ocean Wave Night Light Projector, Baby Lullaby Night Light with 7 Relax Light Show Projection, Music Player, Auto-Off Timer for Nap-time for Baby Nursery, Adults and Kids Bedroom, Living Room (White)
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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.

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.

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. 

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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 ;)

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 ;)

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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!

 

 

 

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