Lissy Shutwell

@lissy-shutwell | contributor
Hi! I’m Lissy. I am a wife and mom to three awesome kids. I advocate for individuals with special needs, and most specifically, Down Syndrome, ADHD, Sensory Processing Disorder, and anxiety. I enjoy dance parties with my kids, date nights with my husband, reading, creating, designing, writing and (sometimes) running. My blog www.lissyaileen.com is a written account and ongoing journey to find balance in an often hectic life. The struggle to maintaining balance in our high-energy, super-loved and often crazy household is real. But through it all we choose JOY.
Lissy Shutwell

Why I Share About My Son With Down Syndrome

I have three kids but I blog and share predominantly about one — my son, Augie, who has Down syndrome. He is not favored over the others. What you see in my writing, on my blog and on social media, is just a glimpse into our lives. It really doesn’t do it justice, but I have to actually live life, not just write about it! So why do I write and share more about Augie?  (Besides the fact that he is adorable). Here is the thing… no one said, “I’m sorry” when I announced I was pregnant with my other kids. No one cried out of sadness. I don’t get a soft and sad, “Oh,” when I share about my other two. People stare at Augie. They ask questions like, “Did you know he had Down syndrome prenatally?” and then they become silent when I say, “Yes, we knew at 14 weeks.” I have to wonder the intent behind the question — did we know? A majority of fetuses with Down syndrome are aborted. As a mother to a child with the same condition, this is disheartening. You may have recently read stories from Iceland and Denmark where they are trying to eradicate Down syndrome. This does not mean they are trying to manipulate genetics; this means they are trying to detect and abort all fetuses that have Down syndrome so they can be a Down syndrome-free society. It is sickening.   There is a stigma attached to Down syndrome and it is a worldwide problem. According to Webster’s Dictionary, the definition of stigma is, “a mark of disgrace or infamy.” It is a negative perception that causes someone to devalue a person. So much so, that whole countries are deciding that people with Down syndrome are not worthy of life! This is not only happening in Iceland or Denmark. While there are many positive stories circulating social media about people with Down syndrome, a quick scroll through the comments shows widespread ignorance. Comments like, “This made me smile. But if I knew my girlfriend was pregnant with a Down syndrome baby, I would want her to get an abortion so we didn’t have to deal with the problems that the baby would have.” Ouch. I try not to read the comments anymore because it breaks my heart. I wonder if the negative commenters had a chance to meet my Augie… would it matter? If they actually got to spend time with him, if they got a high five or a sloppy kiss from him, if they got to watch him bear crawl at a super fast pace around the house, or if they could hear his giggle — would that make a difference? If they could see the glimmer in his eyes — would they care? If they listened as I shared my experience as Augie’s mom — managing through complex medical issues, feeding challenges, therapies, doctor’s appointments and more — only to realize my son is the strongest, most resilient boy I know. And that I am stronger than I ever would have thought. I am a better person now than before — would this leave an impression? Maybe. And, maybe not. But “maybe” is good enough for me to share more. To share what life with Down syndrome is really like (for us).  To impact, even minimally, outdated and negative perceptions. To show our life is “normal,” and happy and good. To show we take vacations, and go to the zoo, and get ice cream, and go the park and make memories — just like all families. That life with Augie is not a burden. It’s a blessing. I share about Augie to help lose the stigma. Follow this journey at Finding Balance. We want to hear your story. Become a Mighty contributor here .

Lissy Shutwell

How My Child With Down Syndrome Changed My Perspective on Diversity

Before I was pregnant with my son, Augie, I had only met one person with Down syndrome. My limited experience, both in breadth and depth, resulted in stereotypical perspectives of Down syndrome molded by general information anyone could find on Google. It wasn’t a negative perspective; it was just narrow and lacked any real substance. I had a textbook understanding. And then I had Augie. In the early hours after his birth, I studied his facial features and his tiny body, looking for all the characteristics I read were typical of Down syndrome. Instead, I noticed how his mouth was slightly open and his lips pursed as he slept, reminding me of his big sister and daddy. I noticed how his hair stuck straight up. I noticed his cute button nose and chubby cheeks. His expressions reminded me of his big brother. My heart fluttered as he grasped my finger with his itty-bitty hand. I gently kissed a soft fold on the back of his neck as he rested skin-to-skin on my chest. That extra kissable skin on his neck is characteristic of Down syndrome, but I no longer thought about it that way. He was just Augie. I relished in the beauty of my son. And in those early hours, my fears and worries of what it would mean to have a child with Down syndrome melted away. He was my son. I felt joy. Down syndrome was and will always be a part of him; his extra 21st chromosome is attached to every cell in his body. And that is amazing. Amazing too that his extraordinary genes are also hugely influenced by his father and me. This was something I was uncertain of before I had Augie, and became clear to me as soon as he was in my arms. Now, almost a year later, those feelings for him have only intensified. I love the characteristics that beautifully connect him to a community of individuals with Down Syndrome. Like his eyes. They are the most beautiful eyes I’ve ever seen. A deep blue color somewhere between his daddy’s icy blue eyes and my dark blue eyes and slightly almond-shaped like so many of his friends with Down syndrome. The likeness of the Down syndrome community is beautiful. But it’s the diversity that is magnificent. Diversity not only in physical characteristics, such as facial features or body shape, but also in personality, abilities, experiences, interests, challenges and successes. This was the perspective I was missing before I had Augie. Now having the privilege of personally knowing many individuals with Down syndrome, including my own son, I get it. I get what I was missing before. Augie is just Augie. There is no textbook, Google article or even doctor who could predict what my son would be like. Generally, maybe. But it’s the intricate details that make him who he is. There is only one Augie in the whole world, and I love him to pieces. I love everything about him. Not everything is always easy, there are very real challenges — b ut there is also very real joy. I would choose him and this life a million times over. Diversity is the beauty and strength of this world. We want to hear your story. Become a Mighty contributor here .

Lissy Shutwell

Why I Prefer People-First Language for My Son With Down Syndrome

Yesterday, I saw an article in a local newspaper that used the words “Down Toddler” in the headline. The article itself was good, but I was very disappointed with the title. Down toddler? Seriously? Years ago I learned that in English, you should reduce unnecessary prepositional phrases in writing. Too many prepositional phrases can over-complicate a sentence and obscure the main subject. I’m not sure why I remember this rule so vividly, but it has stuck with me all these years. I point it out because this particular grammatical rule may have played a role in the writer’s word choice. Of course, this is all speculation, but “Down toddler” may have seemed more to the point than “toddler with Down syndrome.” It certainly kept the title short. What the author failed to realize was how she labeled the child by placing the word “Down” in front of toddler. I’ve said it before, but I’ll say it again — words matter! First and foremost, the little girl in the article is a person. There are many more words that could be used to describe her. Down syndrome is just one attribute; it’s not her whole being. I have a son with Down syndrome. He also has a congenital heart defect and Hirschsprung’s disease, but none of these define him. He is not my Hirschsprung’s baby.  He is not my congenital heart disease baby. Do you hear how silly that sounds? He is also not my Down baby, or Down’s baby, or Down syndrome baby. He is just my baby. Period.  He has blue eyes, brown hair, chubby little legs, the cutest button nose, and Down syndrome. I love that Down syndrome is part of who he is. It’s just not all of who he is. The same goes for my daughter. My daughter is not my ADHD daughter. She is just my daughter. She also happens to have ADHD. Again, words matter. It’s not OK to equate a person with a medical diagnosis. People-first language puts the person before the diagnosis, and it can change the way we see a person. The diagnosis is no longer primary — it can take a back seat. Person-first language is empowering. Start using it today! We want to hear your story. Become a Mighty contributor here .

Lissy Shutwell

What a Mom Sees When She Looks at Her Son With Down Syndrome

Do you ever have those moments that take your breath away — in a good way? An intense and almost overwhelming surge of emotion. Perhaps a first kiss? Or seeing your newborn baby for the first time? I had one of these moments today. It happened when I was looking at my 7-month-old son, Augie. It wasn’t the first time I felt intense emotions while looking at his sweet face and into his dark blue eyes. But today, it felt like a culmination of emotion from the last seven months. The ups and downs that have marked the start of his journey — our journey. From ER visits, extended hospital stays, surgeries, sickness to snuggles, gummy smiles, giggles and achieving milestones. With these emotions came a strong desire to capture this moment forever. To take all the words and emotions out of my head and onto paper. To have something that can always remind me of my feelings in the first year of being Augie’s mom. And so I wrote it all down. What I see. What I wonder. What I hope for. What I know. And what I feel. All when I look at this precious boy — my son — with Down syndrome. When I look at you … I see dark blue eyes so inquisitive and expressive. I see the sweetest button nose where I love to give Eskimo kisses. I see soft baby hair that sticks up everywhere. Your signature look, I call it. I see chubby cheeks, great for Momma’s smooches. I see a scar down your chest from open-heart surgery. Proof that you are strong. A gentle warrior, I say. I see wiggling arms reaching for, playing with and exploring the world around you. I see strong legs, kicking, bearing weight and pushing yourself over. Legs that will someday run and climb. I see two tiny feet and 10 tiny toes that I know are a bit ticklish. I see your hands brought together and your fingers intertwined, almost like you are praying. And, I see a smile that can warm my heart like nothing else. I see beauty. Pure and perfect. When I look at you … I wonder what you are thinking. I wonder if you know how much you are loved. I wonder what tomorrow will bring and then remind myself that today is what matters. I wonder if I’m doing all the right things for you. I wonder how I got so lucky to be your mom. And, I wonder if I’m a good enough mom for you. When I look at you … I hope you reach for the stars. I hope you accomplish your dreams. I hope you fall in love. I hope you are kind and accepting of all people. I hope those same people accept you just as you are. I hope you find joy in all things. And, I hope I never lose you. When I look at you … I know you will do great things. I know you have already changed me for the better. And will continue to do so. I know you will make me proud. You already have. I know we are a team. And, I know we will learn together. I know I will always be by your side, until you tell me otherwise. I also know this will happen, someday. When I look at you … I feel protective. I feel love, deep and true. I feel peace. I feel joy. And, I feel honored to be your mom. I love everything about you. More than I can ever put into words. Follow this journey at Finding Balance.

Lissy Shutwell

Special Needs Mom Responds When Stranger Calls Brother 'Retarded'

We were connected through a mutual friend. Our conversation via Facebook messenger started off friendly enough. He shared a blog post he had written. I shared one about my son, Augie. “Augie has Down syndrome,” I explained. I wrote more, but that statement must have stood out. He responded with a short note that included an invite to read another one of his blog posts. “This one is about my retarded brother,” he wrote. Bam. That word. It struck me in my gut. Hard. Tears formed in my eyes. I opened the blog post and tried to read it. But the whole time, those words replayed in my head. “My retarded brother,” he had said… in response to me sharing I had a child with Down syndrome. He didn’t use the word “retarded” in a vulgar, mean way. He wasn’t making fun of his brother. He was describing his brother using the textbook definition of retarded – “slow or limited in intellectual or emotional development or academic progress.” I assumed this is normal for him to talk about his brother in this way. But, this was not normal for me. I have never and will never think of my son in this way. It hurt me to read those words. Yes, Augie has Down syndrome. But he is so much more than a diagnosis. He is a happy 4-month-old little boy with the best gummy smiles. He loves to stare at me with his expressive eyes. I sing to him. I talk to him. He listens intently. He loves to snuggle. He reaches for his toys and loves playing on his play mat. He can bring a smile to anyone’s face. The R-word is offensive to him, even when there is no ill intent behind it. Yet, there it was, this word that made me cringe, cry, and snarl all at once. Augie is only 4 months old, and already this word was indirectly thrown in his direction. I now had a choice for how to respond. I could ignore it. I didn’t know this person. We had only exchanged a couple of messages back and forth. I could just choose not to respond and go on with my life. But that word. The kick in the gut I felt when I read it. I couldn’t just ignore it. I could be passive aggressive and just blog about it. Not actually say anything back to him but get out my feelings through writing. Avoid conflict. But, again, that word. The tears that dropped from my eyes when I read it. I couldn’t be passive about the use of that word. So I went with option 3. I chose to respond and address it. I carefully considered the words I would use in my response. Because words matter. Words can lift a person up or tear them down. They are powerful. This was not about being aggressive or rude, stepping up on a pedestal and looking down on this stranger, or shaming him. This was about sharing a different perspective with him, and ensuring he understood how that word made me feel. I let my emotions simmer down, and then I wrote. Here was my response: Thank you again for sharing. Your faith is strong and your writing compelling. […] To be honest though, I was thrown off before I even opened your blog post by how you described your brother as your “retarded brother”. I know that you were not using the r-word as an offensive term, and in it’s truest form, it is simply a description of someone less mentally, physically or socially developed for their age. And it is probably very normal for you how talk about your brother. But let me offer a different perspective. You never know how a word like ‘retarded’ is going to hit somebody. Or, who may have a child or sibling that has had that word thrown at them in a hurtful, disrespectful, ugly way. Even in the medical world, mental retardation is no longer used. In the same way that mental retardation replaced words like idiocy several decades ago, now intellectual disability is a more appropriate description. I also think that people-first language is important no matter who we talk about. Down syndrome does not define my son… Augie is not a Down’s baby, he is not Down Syndrome. Augie has Down Syndrome. I always put him first when I talk about him. […]” He never responded, so I don’t know that I made a difference. Maybe I did, and maybe the next time this individual describes his brother, he’ll choose different words that highlight the unique and wonderful person his brother most definitely is. But, maybe he won’t. And that is OK. Because I went with option 3. I spoke up. I was respectful but honest. I didn’t allow an offensive word to slide by without explaining my point of view. I stood up for the stranger’s brother. I stood up for Augie. And I will continue to do so. Always. Because that’s what mommas do. Spread the Word to End the Word!  You can head here  to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people. Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes .

Lissy Shutwell

Down Syndrome: Society Needs to Catch Up With Medical Advances

If you’ve read any of my other posts on Down syndrome, you know I have accepted and embraced my son Augie’s diagnosis and did so very early on in my pregnancy. It’s just part of who he is. One thing I didn’t know or expect when the geneticist first shared he had Down syndrome was that his extra 21st chromosome could potentially cause health issues, mainly heart defects and gastrointestinal issues. Not all kids with Down syndrome or other chromosomal anomalies have health issues, but it is pretty common. And it’s so hard because (for Augie) it’s meant multiple surgeries, lots of pokes, frequent doctor visits and hospital stays. So as I started this blog post, it was primarily around the health issues — and frankly, complaining about them. Why does an extra chromosome have to be accompanied by health issues, I asked. But as I thought about it more, I realized health issues come with being human, regardless of how many chromosomes you have. Yes, because Augie has Down syndrome, he is more prone to heart defects and other issues. But we, as humans, are prone to many different illnesses, diseases and health issues. So instead of complaining about why his extra chromosome is accompanied with health issues, I’m thankful he was born in the year 2016 when we have remarkable technology and medical professionals to treat those various health issues. It is more possible and plausible than ever before to move from major health issues to non-issues. If my son had been born more than 30 years ago, his life expectancy would only be in his 20s at best, according to the National Down Syndrome Society . Now, individuals with Down syndrome live into their 60s, and who knows how that will further improve as Augie gets older. And this has to be, in large part, due to medical advancements. It’s amazing what can be done nowadays. I’m seriously in awe of the medical staff that care for Augie. What they know, what they can do, the technology that is available to them. Seriously. In. Awe. Early intervention services to focus on gross and fine motor skills, communication skills and more are helping to ensure quality of life is also improved. Not only are individuals with Down syndrome living longer, but they are living fulfilling, good lives. And the steps we (as Augie’s parents) are taking early on can have a tremendous impact. That doesn’t mean there won’t be challenges and struggles. There will be. Augie may have to work harder to achieve the same milestones as other kids his age. And there may be some things he just won’t be able to do. And that is OK. He is diverse. He’ll have his own strengths and weaknesses, just like the rest of us! I will always be there to champion him, encourage him and celebrate his victories. The thing that is lagging behind in this year of 2016 — the thing that needs to catch up to the medical and therapy advancements — is society’s perspectives on individuals with Down syndrome. There are many outdated perspectives, some of which I had myself before further educating myself in preparation to raise my son. There are stereotypes associated with Down syndrome, and many people automatically associate various mental and physical delays with those words. Assumptions about abilities are preconceived. Lack of intelligence is associated with communication struggles. And more. As human beings we fear the unknown. Most of us like routine and normalcy (however we define it) and comfortableness. So when something or someone is different, we don’t always know how to respond. But here’s the thing: Perspectives can be changed. Do you fear the unknown? Then, make it known to you. Educate yourself. Ask questions. Don’t make assumptions. Be open-minded to what you might learn. Individuals with Down syndrome are capable human beings. Their extra chromosome makes them diverse, not lesser than anyone else. Here is my commitment to you as my child’s advocate. I will not judge you when you ask questions, I will always respond with grace, I will gently correct or educate as needed and I will share new perspectives with you. And as I raise my son, he will learn the same from me. So will my big kids. To love, not judge. To embrace differences. To ask questions. To respond with grace over anger. To not fear the unknown. To give all people a chance. To make all people feel valued. And I hope that society will do the same for Augie. Follow this journey at Finding Balance.