To preface, this isn’t meant to be a “what not to say or do” guide to parents of children with special needs. The goal is to give you a little insight into our minds and where we come from as parents when we hear certain stereotypes.
Sometimes when Auggie is sitting in a shopping cart while we’re browsing in a store, I notice the stares. Not necessarily bad stares, but a smile at him that lingers, usually accompanied by a head tilt. 3 out of 10 times the person will come up and ask, “What a sweet baby! How old?” I politely answer, to which they reply, “He’s so cute. My cousin’s neighbor has Down Syndrome. They are such happy, special people.” Most would find this to be an innocent compliment. And more than likely that’s what the stranger intended it to be. But as I smile and thank them before going on my way, a pang of frustration hits me.
My son isn’t always happy.
He whines when his favorite toy doesn’t squeak when he banged it against the coffee table. He cries when we stop him from splashing around in our dogs water bowl. Sometimes he cries just because the music that was on stopped, or his Winnie The Pooh dvd ended. And you can forget about him letting anyone hold him that isn’t me or his dad (the stranger danger is strong with this one).
Often times, there are stereotypical beliefs towards those with DS. They’re always happy. They love to dance. They are always kind. They may not be able to drive, live on their own, get married, and will only work at fast food joints.
Auggie loves to dance, but it’s not because he has Down Syndrome. Auggie will most likely feel pain, sadness, and anger as a boy, and later as a grown adult. And we don’t know what the future may bring, but we fully intend on raising him to be responsible, driven, and we plan on being supportive of whatever career path he chooses. Whether he wants to manage or work at a restaurant, or teach music at a university. We will show him that he has just as many opportunities as one with “typical” chromosomes would have.
Which leads me to the inspirational stories. Every so often someone will send me a link to a video. A young teenage woman with DS gets voted as Homecoming Queen. A basketball team lets a young man make a basket at a game. A high school football team invites a student to throw the football. There is a pattern here that I’m hoping is becoming more noticeable. Jimmy and I mulled over this recently as we saw another one of these videos. I didn’t know how to word it at first, but Jimmy happened to say exactly what was on my mind.
He said, “I don’t want Auggie to get special treatment. I don’t want people to give him opportunities because they feel obligated to. I don’t want him to be given things because he’s ‘different’. I want him to earn his success and be treated just like everyone else.”
And the truth is, I don’t want Auggie to stand out in that way either. I don’t want his high school basketball team asking him to make the first basket for people to film. I want him to be ON the team and make it during a game, just like everyone else does. I want him to struggle. I want him to grow. I want him to know the disappointment of not getting something he wants, whether it’s the part-time job he applied for, the A+ he wanted on that math test, the attention of the pretty girl in his class who friendzoned him, or the new video game he can’t get because he hasn’t cleaned his room. See, we believe in treating Auggie exactly the same as we would treat his future siblings. He will not be defined by his extra chromosome at home and though we cannot control how everyone else treats him we can only hope that he gets asked to events based on his personality alone and the fact that he’s fun to be around, and not because people feel obligated to.
Show me a video of Tim Harris, the owner of Tim’s Place welcoming guests to his restaurant. Show me a video of the beautiful actress, Sarah Gordy doing her thing on tv. Show me Sarah Wolff, the brave woman who started a petition called the ABLE act which is a commonsense piece of legislation that allows families of disabled children to have the same access to tax preferred savings accounts as the parents of “typical” college-bound kids.
August may not ever participate in The Special Olympics. He may not be an actor. He may not do something that goes viral on the internet. But that’s okay, because we are more than confident that he will do big things. And he will do those big things on his own, with us as his biggest cheerleaders.
Every time we travel back to California to visit family around the holidays, lots of pictures are taken. Not just by me, but by my photographer sister-in-love, Jhen. So many that I’m STILL going through and editing them, 2.5 months later. I’ve realized that I take my time editing these because it’s a way for me to relive the time we spent back home.
Photography is how I express myself, so it’s been very important for me to depict emotion in my photographs. Jhen and I usually always discuss fun shoots we want to try before getting to California and this was a trip AND shoot I was so looking forward to and was really special since we were also meeting the newest addition, miss Joleen Rozlyn. We fortunately had the chance to be around most of her big sister Josselyn’s first two years of life. But since moving to Alaska in 2011, it’s been reduced to once a year which has made us more homesick than we knew.
Joleen has already grown immensely since these pictures were taken! She has a striking resemblance to her auntie Jacky and her uncle Jimmy (my husband), yet she still looks just like her big sister in so many ways. These precious girls have my heart (and they give me a huge baby girl fix, in a household of boys).
“A portrait of my son, once a week, every week, in 2014.”
Auggie: As of lately, your newest thing is putting your toys in their buckets and cubbies, taking them out and repeating the cycle. You’re also starting to share. When we ask for a toy you’re holding, you without hesitation hand it to us. We are starting to see so much more of your personality and it’s been such a joy to see it develop. I love your heart and the kindness you’re already showing as an almost two year old.
“A portrait of my son, once a week, every week, in 2014.”
Auggie: Playing a few mornings ago next to the window. One of your favorite things to do is to play in the sun. Whether it’s outside, or in the little slivers of sunlight that come from the window. I find this to be a little ironic, seeing as how we live in Alaska where the sun shines significantly less than most places. Two of my favorite pictures of you (here and here) were taken with you basking in the window light with your airplane, and chasing your shadow. In less than two years we will be leaving from here on a new adventure and for your sake (and maybe partly ours) I hope it’s somewhere a bit more sunny.