Paula Tzouanakis Anderson

@paula-tzouanakis-anderson | contributor
Proud mom and advocate of 2 beautiful children, Christian who rocks an extra chromosome & Lucy who just adores her older brother. Founder & Chair of Project 321 Peel Down Syndrome Assoc.

It's OK to Acknowledge Differences When We Talk About Disability

In the disability community, the tag line “more alike than different” is often advocated by loving parents seeking acceptance for their children. After my three-year membership in this wonderful club, I’ve decided not to use this phrase when advocating for my son, Leo, who was born with Down syndrome. The extra chromosome that comes with Down syndrome makes my son different. Yes, he is still a 3-year-old boy who loves to growl like a dinosaur and laughs when anyone burps. But for every “likeness” he shares with typical kids, there is a difference that sets him apart. He learns differently. He communicates differently. He gets sick differently. He expresses himself differently. You can see he is different by his looks alone. As a loving mom, I understand the “more alike than different” mantra. And while the goal of acceptance is a worthy one, I think we as parents, peers and human beings can approve upon that acceptance. Rather than accepting Leo for being “more alike,” why can’t we accept him for being different? My sister was born with a limb difference. On a family trip to Disney World, we were eating lunch and a young boy saw her and began to stare. The parents proceeded to, not so subtly, scold the boy. This process repeated itself, within my sister’s earshot, for about 10 minutes. I was filled with emotions and I watched my little sister turn red and well up with tears. I have played that moment back thousands of times. Should I have said something? Should my parents have stepped in? What could have been done to avoid the pain she felt? I feel the solution to this begins in the way we explain disabilities and differences to ourselves, and more importantly, our children. We put this topic in a dark corner of the room so we don’t have to see it. We pretend we are doing this for the people who have differences and disabilities. In reality, we do this so we can avoid feeling awkward and uncomfortable. If you ask my sister how she wants to be treated, she will tell you she wants people to ask about her arm instead of unsuccessfully pretending not to notice. I would rather those kids on the playground ask why my son uses a walker, or why he has braces on his feet instead of whispering to each other and running away. We need to shine a light in that dark corner. Instead of teaching our kids not to stare, let’s teach them to look and see the difference. Instead of teaching our kids not to ask, we should teach them to ask and then learn about disability. What if rather than being embarrassed by your child staring and asking why my son and sister look different, you instead acknowledge that they are different and that is a great thing to be! Change happens when we grapple with discomfort — when we leave our comfort zone and become comfortable with being uncomfortable. Accepting people with disabilities isn’t going to happen until we talk about it. It won’t happen until we shine a light into that dark corner of the room and see that different isn’t wrong or shameful. Different needs no explanation. My sister with a limb difference is not the same as your sister. My son with Down syndrome is not the same as your son. Isn’t that wonderful?

When I Realized the Meaning of the R-Word and the Weight It Carried

I grew up in the 80s and 90s where using derogatory slangwords was somehow acceptable. The R-word along with other inappropriate terms came out of my mouth often. I am not proud to have to admit this, however, I can very confidently say that as I have grown so has my mind, my vocabulary and my empathy towards people and their feelings. All too often I hear people say, words are just words. Yes, but they also carry weight, the amount of weight they carry depends on who you are and/or the challenges you have had to face. This became very apparent to me one day as I was driving home from work and someone cut me off. I got frustrated at the driver and yelled out to him in my car where only I could hear, “Where did you get your license you R-word…” That’s when it happened for me…my AHA moment!  The time I realized the true meaning of a word and the weight it carried. I felt like I just got sucker punched in the gut by the incredible hulk, I immediately started crying and vowed to never use that word again. What made me react this way? I was in my second trimester of myvery first pregnancy. Three weeks prior to this incident, my husband and I found out that the baby I was carrying was going to be born with  Down syndrome. So this word that used to escape my mouth from time to time just grew a face…my child’s face! This is theword that I used to describe something or someone that was less than, “not normal, not smart, brainless, deficient, dense, empty-headed, foolish, half-witted, idiotic, inane, meaningless, mindless, moronic, pointless, senseless, simple, simple-minded, slow, unthinking, witless, doltish,” do you get the point? There were so many other words to use, instead I chose to use the one word that actually meant something completely different. The R-word for those that don’t realize it, was an acceptable medical term used to describe a person with Down syndrome and or other intellectual disabilities. So by calling someone the R-word I am ultimately saying that the person has Down syndrome, but it is never used as a term of endearment. It is used along with a negative connotation as if it’s the worse thing you could ever be. My son’s genetic makeup is at the brunt of an insult…how disgusting did I feel? Why did I not realize this sooner? Why did it take me having a child with Down syndrome to realize this? I can’t answer confidently, but one thing I did know for sure was now that I know better I had to do better! I had to advocate for people to stop using the R-word. I knew quite a few people in my inner circle of family and friends who used the word, and every time I heard it, I had the same feeling — a sucker punch to the gut by the incredible hulk. That feeling has still not changed to this very day! I can only hope that over the last six years I have helped give a face to that word for others around me including my family and friends now that they have gotten to know the sweet, loving, incredible little boy of mine. I hope that they no longer choose to use that word knowing how much weight it carries for me and my family, and if they love and respect myself and my family they would have stopped using the word, and not just around me. Even if the intention was to never “mean it in that way” (which is a lame excuse in my opinion)! There is only one definition of the R-word so please save yourself some time by trying to excuse it to me and just please, please, please stop using it. So, I leave you with this— the next time that word tries to escape your lips, look above at the list of words and maybe choose one of them instead. I vowed from that day forward that I would forever advocate for people with Down syndrome and any exceptionality and will call out people no matter where I was. I have stayed true to this promise, I have lost friends, confronted complete strangers, called out friends and family members and will continue to do so until the day I can no longer.

Community Voices

Getting Inked for Down syndrome

Being part of #theluckyfew is hard to put into words.  Until you are actually a part of this exclusive club

you can’t truly grasp what it means!  On April 29, 2018 John Street Tattoo in Hamilton, ON tattooed over 160 people with some variation of three chevrons pointing up.  3 because of the triplication of the 21st

chromosomes that make up #DownSyndrome and the upward point for our fierce

passion to rise up and push forward breaking through the stereotypes that

society has of our children.

This day brought together people from all over the Golden

horseshoe.   Parents, siblings, aunts, uncles,

grandparents, teachers, educational assistants and complete strangers to Down

syndrome, all waiting around chit chatting and getting to know one another

until their number got called to be next in line to get inked.. It was a

monumental day for our community here in Ontario and will forever hold a special place in my heart!  Before this day I never imagined myself ever getting a tattoo, however this is not just a tattoo its a statement that we are making together collectively as a community.

Thank you John Street and their artists who donated all sales and tips collectively raising $10,000 which was donated to Project 321 Peel Down syndrome Association to put towards fine arts programs and activities for their VIP’s.

Catch a glimpse of our extraordinary day!

www.youtube.com/watch

Community Voices

Highlighting #TheLuckyFew

Today being the last day of Canadian Down syndrome awareness week I wanted to share: Being part of #theluckyfew is hard to put into words.  Until you are actually a part of this exclusive club
you can’t truly grasp what it means!  On April 29, 2018 John Street Tattoo in Hamilton, ON tattooed over 160 people with some variation of three chevrons pointing up.  3 because of the triplication of the 21st
chromosomes that make up Down syndrome and the upward point for our fierce
passion to rise up and push forward breaking through the stereotypes that
society has of our children.
This day brought together people from all over the Golden
horseshoe.   Parents, siblings, aunts, uncles,
grandparents, teachers, educational assistants and complete strangers to , all waiting around chit chatting and getting to know one another until their number got called to be next in line to get inked.. It was a monumental day for our community here in Ontario and will forever hold a special place in my heart! Before this day I never imagined myself ever getting a tattoo, however this is not just a tattoo its a statement that we are making together collectively as a community.
Catch a glimpse of our extraordinary day!
https://www.youtube.com/watch?v=N9BoVsG-FiY
#TheLuckyFew #downsyndromeawarnessweek #CDSS #Tattoo #riseup #project321peel

My Son With Down Syndrome Is 'Perfect, Fine, Normal and Healthy'

After an almost three year struggle with infertility, a few failed IUI’s and many timed intercourse failures, my husband and I signed papers to start the IVF process. I was 32 years old at the time. The month of cycle monitoring prior to the retrieval is when it finally happened on its own and nine months later I gave birth to my perfectly normal, fine and healthy son with Down syndrome. I highlight “perfectly normal and fine and healthy” for two reasons: 1. That is exactly what he is: perfect, normal, fine and healthy. 2. Those are the words I often hear people say when they talk about their prenatal testing results and their babies not having Down syndrome. Using these words basically imply that if their baby did have Down syndrome they wouldn’t be perfect, normal, fine or healthy. When people say this, I hear my child with Down syndrome doesn’t fit in the categories of “perfect,” “fine,” “normal” or “healthy” and that couldn’t be further from the truth! People need to understand that words hurt! What differentiates your child and mine is one extra chromosome. That’s it! My son eats, drinks, plays, sings, dances, laughs, cries, sleeps, plays, fights with his sister and so much more, just like your child with 46 chromosomes does. Yet my son’s life is valued differently? How is that fair? I hate that prenatal testing is often referred to as “the Down syndrome test.” I also hate that when a positive prenatal assessment for Down syndrome is given it is automatically followed with “options.” Why should a mother be asked if she wants to end her pregnancy when everyone knows the second you find out you are pregnant, termination is an option? Why do the medical professionals even need to bring it up? Why not let the parents come out and ask for it, if that is what they truly want? By providing them that option you are telling them off the bat the baby they are carrying is less than. Why not provide them with up to date and valid information, introduce them to a family who is walking that journey and have them answer any questions they may have on what life is like with Down syndrome? I also hate that after 35 you are at “high risk” for having a baby with Down syndrome. As far as I am concerned, the only fear with the term “high risk” is death. I was 32. In fact, I know more people who had a child with Down syndrome under the age of 35 than over. I am not opposed to prenatal testing as it can be lifesaving if your baby will be born with any medical complications upon birth and testing can help determine the right team that needs to be present during the birthing process to ensure a safe delivery. I challenge you with this, please choose your words carefully, especially when you have a larger audience reading your responses on social media. You never know who is reading your responses and how you may hurt them. When someone asks questions on prenatal testing results, think about how you will answer. I understand that finding out your baby could or will have Down syndrome when they are born can be scary. All unknowns are scary. But one thing I can promise you is this, you will be joining one of the most supportive clubs around. #theluckyfew

My Son With Down Syndrome Is 'Perfect, Fine, Normal and Healthy'

After an almost three year struggle with infertility, a few failed IUI’s and many timed intercourse failures, my husband and I signed papers to start the IVF process. I was 32 years old at the time. The month of cycle monitoring prior to the retrieval is when it finally happened on its own and nine months later I gave birth to my perfectly normal, fine and healthy son with Down syndrome. I highlight “perfectly normal and fine and healthy” for two reasons: 1. That is exactly what he is: perfect, normal, fine and healthy. 2. Those are the words I often hear people say when they talk about their prenatal testing results and their babies not having Down syndrome. Using these words basically imply that if their baby did have Down syndrome they wouldn’t be perfect, normal, fine or healthy. When people say this, I hear my child with Down syndrome doesn’t fit in the categories of “perfect,” “fine,” “normal” or “healthy” and that couldn’t be further from the truth! People need to understand that words hurt! What differentiates your child and mine is one extra chromosome. That’s it! My son eats, drinks, plays, sings, dances, laughs, cries, sleeps, plays, fights with his sister and so much more, just like your child with 46 chromosomes does. Yet my son’s life is valued differently? How is that fair? I hate that prenatal testing is often referred to as “the Down syndrome test.” I also hate that when a positive prenatal assessment for Down syndrome is given it is automatically followed with “options.” Why should a mother be asked if she wants to end her pregnancy when everyone knows the second you find out you are pregnant, termination is an option? Why do the medical professionals even need to bring it up? Why not let the parents come out and ask for it, if that is what they truly want? By providing them that option you are telling them off the bat the baby they are carrying is less than. Why not provide them with up to date and valid information, introduce them to a family who is walking that journey and have them answer any questions they may have on what life is like with Down syndrome? I also hate that after 35 you are at “high risk” for having a baby with Down syndrome. As far as I am concerned, the only fear with the term “high risk” is death. I was 32. In fact, I know more people who had a child with Down syndrome under the age of 35 than over. I am not opposed to prenatal testing as it can be lifesaving if your baby will be born with any medical complications upon birth and testing can help determine the right team that needs to be present during the birthing process to ensure a safe delivery. I challenge you with this, please choose your words carefully, especially when you have a larger audience reading your responses on social media. You never know who is reading your responses and how you may hurt them. When someone asks questions on prenatal testing results, think about how you will answer. I understand that finding out your baby could or will have Down syndrome when they are born can be scary. All unknowns are scary. But one thing I can promise you is this, you will be joining one of the most supportive clubs around. #theluckyfew

Doctor's Can't Predict the Future of a Baby Born With Down Syndrome

Imagine this: Your son is born and doctors come in to look at him and tell you that just by looking at your beautiful baby boy they know he is going to live a long and healthy life, be a straight A student on the honor role, be the captain of his high school soccer team, go to university and graduate top of his class, go to med school and become a doctor, run a successful practice, get married to a beautiful woman and have five children. He will live a long, healthy and successful life…all that just by looking at him. How happy would you be? You would perhaps walk away thinking, I just won the lottery… I couldn’t have asked for anything more perfect! Now imagine this: Your son is born and doctors come in and look at your beautiful baby boy and say, “I’m sorry, but your son will have many medical complications. In fact, we have a list of things to keep an eye on as he grows. Don’t expect him to live longer than 60. Your son is also going to take a long time to learn to do anything. If he goes to school don’t really expect much from him, because in the end he won’t even graduate from high school with a diploma, because lets face it, he doesn’t need it. He is already set up by the government once he turns 18 to live below the poverty line, because he will never be able to work and make his own living. He will likely have a shorter than average, sad, pathetic life full of hospital visits.” How sad would you be? You would walk away feeling sad and angry, thinking, how did this happen? Why me? Now I ask you this — how possible is it for the first scenario to actually happen? I can confidently say it doesn’t happen. Unfortunately, a mother and father who just welcomed a baby with Down syndrome into their family will hear the second scenario almost always! But just as the doctors can’t tell you what’s in store for your newborn typical baby, they can’t tell you what’s in store for your newborn baby with Down syndrome. Scenario two was the reality for my husband and me when we found out at 17 weeks prenatally that our baby would be born with Down syndrome. Thankfully, we had a lovely geneticist who shared a few positive things about individuals with Down syndrome, but a lot of the information that was given to us was focused on things our unborn child would not be able to do or would have difficulties doing. We even had some medical professional suggest we terminate our pregnancy, “because your life will be in and out of hospitals.” This is why I constantly advocate for people with Down syndrome. People always seem to think they know what my son is capable or not capable of doing simply by the fact that he has Down syndrome. The medical community and the education system already have their minds made up before they even give him a chance. When I was pregnant, I committed to Christian — my beautiful son — that I would do whatever I have to do to make sure he gets everything he wants and deserves in life. This is why I do what I do. This is why I talk and educate about Down syndrome… to show our physicians, families and communities that you can’t predict someone’s future with simply a look. My hope is that one day when a baby with Down syndrome, doctors and nurses will wish these parents a “congratulations” on their new addition, rather than the “I’m sorry” followed by the doom and gloom they think the life of the child will be. We want to hear your story. Become a Mighty contributor here . A version of this entry was first posted on Paula’s Facebook page.