Suzie Skougard

@suzie-skougard | contributor
Suzie is a wife, mother and blogger living in Orange County, California. You can usually spot her in a crowd by the spit up on her shirt, the four kids clinging to her limbs, the ponytail and the yoga pants, but she’s loving this mom gig. This is her amazing journey.
Suzie Skougard

Advice for When You Compare Your Child With Down Syndrome to Others

My daughter was diagnosed prenatally with Down syndrome. When she was born, she was born in heart failure. During one of the frequent hospitalizations in the beginning of her life, I created a Facebook page, Team Carly Jean, for long-distance family to follow. After a few posts I made picked up attention and Carly’s health and development steadily improved, I began getting questions from parents all over the world asking for advice in coming to terms with their child’s diagnosis. In honor of Down Syndrome Awareness Month, I wanted to provide some reassurance. “My daughter isn’t even trying to walk yet, she doesn’t even want to stand.” “I can’t believe your daughter is talking so much. My son hasn’t said a word yet, and I’m getting worried.” “My daughter is so far behind her ‘typical’ peers!” “Surprise! I picked these flowers for you, Mom.” My 4-year-old leapt through the door. Her cheeks were dirty, but her smile gleamed, and in her hands she held a small bouquet of dandelions. “Aren’t they beautiful?!” In our backyard, we have hollyhocks, daisies, forget-me-nots and roses. She presented me with a handful of two yellow dandelions and three empty stems. “I made the wishes just for you! They are the most beautiful flowers I have ever seen!” “Thank you. I think you are right. These might just be the prettiest flowers I’ve ever received.” We took the dandelions — and what was left of them — and put them in a Dixie cup of water and placed them on the kitchen counter. That night after the kids went to bed, I went into the kitchen to get a snack, saw the dandelions and paused. She could have picked any of the flowers that were planted and growing in abundance, but she preferred the ones that were rare and spontaneous. The joy in her face, the way she felt so proud to have found the special flowers, and the fact that she wanted me to have them instead of keeping them for herself really did make the nearly bare stems seem like the most beautiful flowers in the whole world. They were perfect flowers. They grew from seeds, drew adequate sunlight and took enough nutrients from the soil to grow. Then their seeds spread when she blew the stalks. They brought my daughter a smile when she picked them, and they gave me happiness to receive them, maybe more than a store-bought bouquet could have. My daughter taught me a valuable lesson. When we pause to appreciate something just as it is, it’s beautiful. It’s only when we compare it to others that we might find faults. Imagine if I had said to her, “Well, those aren’t beautiful. Those are just weeds. The daisies over there are much more beautiful.” When we begin to compare, we often lose the ability to appreciate what we already have. It struck me, though, that when humans stand out as unique, we don’t necessarily appreciate their beauty. Sometimes people stare, and sometimes they avert their eyes. Our children are perfect children. They began their journey in the womb, just like everyone else. They received nourishment from their mothers’ bodies and came out of them into the world, just like everyone else. They will experience life, with all of its twists and turns, just like everyone else. There is beauty in the fact that they are unique. They bring smiles and show love. They are perfectly themselves, just as they were made to be. We’ve all done it at some point in our lives — compared ourselves to others to try to gauge where we are going based on what we observe. When we compare our kids to other kids, I believe we’re doing our children a huge disservice. Still, it seems natural to want to compare. Our minds like to file, rank, organize and sort information. We like to search for patterns and find a plan. Instead of comparing your child to anyone else, try exercising the ability to compare them solely to themselves. Next time you get the urge to compare, redirect the thought. What is your child doing today that they couldn’t have done a week ago, a month ago, a year ago? How have they shattered your expectations, no matter how little the action was? Maybe they successfully used a spoon and drank from a straw. Maybe they are two weeks out from a serious surgery and supporting their own head. That’s a lot of work! Low muscle tone affects kids in different ways. When it comes to walking, they will get there in their own time, when they are ready. In the meantime, you have a little blessing in disguise, because you can use the time they are sitting to build on language and speech. If they take off walking early and speech is taking a while to come forward, that’s OK, too. Sometimes, oral tone is lower than the tone in their hamstrings. Eventually, with your guidance and love, the mouth can catch up to the legs. Even if the mouth never totally catches up and speech clarity is an issue, they can learn the building blocks of language and have the potential to sign (and I recommend signs anyway!) or use adaptive communication devices. We live in an amazing age for communication. Sometimes, they just have low tone everywhere. It’s not something you are doing wrong, it’s just the reality of their extraordinary little bodies. When we remove the comparison, all that is left is perfection. So as you watch all of your wishes for your little one come true, remember to thank the dandelions. Suzie’s book, “Dear Team Carly Jean: Accepting Down Syndrome & Embracing Life,” is available on Amazon. We want to hear your story. Become a Mighty contributor here .

Suzie Skougard

Problem With Saying 'Low' and 'High-Functioning' Down Syndrome

It happens every time my daughter’s Down syndrome is brought up. The intent behind the question is almost always well-meaning — but it still gives me pause. I don’t know how to answer the question. She has her strengths and her weaknesses, just like anyone else. She works harder than most people I know on a daily basis. How would you classify my other kids? If one were struggling in a subject, would it somehow make them less of a person? Am I high-functioning? Are you? Does it even matter? What if I came out and said, “She’s low-functioning.” What would that do for her? What would be assumed? That it doesn’t matter how she’s treated? She’d be treated as though she were incompetent in all realms, and most likely, not even given a chance to try something new, because there would be assumptions that she wouldn’t catch on, she wouldn’t know how. I believe I’d be giving permission for everyone to sell her short before she even had a chance. As a mother, I can’t do that to my child. My daughter is prone to fits and tantrums when she doesn’t get her way. She has hit her siblings, and bit them, just like any toddler. I have already been on the receiving end of confused and even dirty looks for scolding her and making her give a hug to say sorry, as well-meaning people try to brush it aside and make excuses for it by saying she doesn’t know any better. It’s sweet that they’re willing to look past these behaviors and beyond to my beautiful daughter, but it’s also misguided. That poor little girl who is too “low-functioning” to “know better” will one day be a grown woman, and if she isn’t held to the same standards of behavior as anyone else, what kind of woman would I have raised? She may not understand entirely yet, but she’ll never learn if she isn’t taught. I understand that a lot of people equate functioning with level of independence, and they worry for me, that I’ll be caring for a child forever. Maybe she’ll live at home forever, and maybe she won’t, but rest assured, my children are my children forever, regardless of where they are. I know adults with Down syndrome who live in their own apartments at 22, and I know typical adults in their 30s who still live at home with their parents. I have no guarantees that my other children won’t either. I have yet to meet a single person who has grown evenly across the board and never struggled in an area, be it academically, athletically or socially. Still, it seems we hold people with intellectual disabilities to a different standard than we hold ourselves. Why do we allow ourselves the time and room to practice and get things right, but when it takes someone with an intellectual disability longer, they are written off? My daughter knows a lot of signs, and her speech is awesome. She’s not anywhere close to walking; she’s happy to crawl to get around. She loves baby dolls and Fisher Price Little People. She loves hugs and kisses. Her favorite song is “Itsy Bitsy Spider.” She is “functioning” just like anyone else. Down syndrome doesn’t mean she’s broken, but when you ask, it’s what you imply. It’s just another label, blocking the view of a wonderful child. Instead of asking, if you’re curious — spend some time around her. Watch her. She’ll blow you away. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Suzie Skougard

Why I 'Overshare' About My Child With Down Syndrome Online

“You share too much about your daughter online.” I know I overshare my daughter, Carly. It’s out of fear. I share because people stare. As she’s gotten older, it’s become more and more real. She is looked at differently. At checkouts and restaurants. Everywhere in between. When she was younger, I think people didn’t notice as much. They do now. I share because I want to end the ignorant remarks that she “suffers” from her Down syndrome and that her life isn’t worth living. You can see in every photo her unwavering smile. My child doesn’t suffer, she thrives. She has Down syndrome, but if she’s happy and loved, who is anyone to say she doesn’t have a right to life because she may never be an astrophysicist? What’s the metric here? Where’s the line that puts that life above hers? I think the people who say this are suffering from a lack of education, compassion and respect for their fellow man. I share to show that my daughter contributes positivity to the world. She contributes pure joy and unconditional love, and I’d rather have her in my corner any day than someone who thumbs their nose at those they deem “less than.” I share because I’m afraid my daughter will become what society expects of her. Right now, they expect very little, and it’s terrifying. I hear it time and time again. Evaluations, therapies, doctor appointments. “Well, that’s the Down syndrome.” So I share. Based on her evaluations, she can do little. She’s painfully shy, and she clams up around other people. They mistake her shyness for complete incompetence, and it’s used against us. “She doesn’t understand enough for speech therapy.” Meanwhile, here she is at home stringing three signs together and able to use a handful of words at 15 months. She understands. I share to try to change that perception. People talk about her like she isn’t in the room. She hears. Those words are shaping her. Hearing “She can’t” and “She won’t ever” are the building blocks being laid out for her by professionals. It would be great if instead they said, “She may take a little more time to get the hang of…” or, “These are skills that will require a lot of practice.” I share because we’re already fighting for her right to be seen, to be educated, for her right to be heard, for her right just to be a little girl. I share Carly with the world because I want the world to see her and challenge her. I assure you, I see the sparkle in her eyes. She will rise to the occasion. I share because I want people to know her. I am afraid the world won’t see past her diagnosis. I’m afraid people will see her as a label and not a person. I share because I still hear the word “retard” dropped on the daily. Yeah, I used to say it, too. And then I realized it hurt people, and just like that — I stopped. It’s not funny, and it’s marginalizing an entire group of people. If you can avoid it and use a word that doesn’t hurt, why wouldn’t you? It doesn’t require effort, just a thesaurus. I share because I want my daughter to grow up in a more caring world. I won’t police the hate, but I will speak up loudly against it. I will counter it with everything I have. And I will continue to share my daughter so that for every one person using the word to bring her down, there are hundreds rallying behind her, lifting her up. I share because I want people to get a glimpse of what Down syndrome is, and that it’s not scary. If you take the time to get to know my daughter, you’ll be able to look past it. When I’m sharing her with you, I’m sharing my heart. So please, don’t take it lightly. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.