Why inspirational stories and words don’t always feel inspirational.

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.

Danielle Gerbetz Segui - I heard the most aggravating comment while out in town last weekend, something that even angered Tony. We were walking around the local farmers market, and came across a lady who was trying to sell necklaces. As we smiled and continued walking, she yelled, “They’re made by autistic children!” I instantly snarled at her. What a tasteless tactic to try and sell your goods. I will never understand why there’s this stereotype that special needs children will only grow up to make necklaces or work as a grocery bagger. They are normal people who deserved to be treated like a normal human being.

Rebecca May Ruegger - The fact that you are not having the diagnoses of DS define who Auggie is
and who you are as his parents is fantastic! I have a daughter with special needs.
We have never treated her any differently than her siblings, she has cores, she
she gets in trouble and she gets rewarded the same. We do not allow her disability
to define her or how she is treated. My applause to you both as you set out
on your grand adventure of being partners!!

Mary Landry - So proud to see parents treat their child like any other child. He will go far in life with such strong parents. I know it is not easy . You have challenges daily. I have taught special children for twenty three years. Not many parent do what you do for their children. Keep up the good work .

Lauren Bong - You and your husband are awesome parents. You were, from the very moment you chose life for him. Everyday, I work with 200+ adults with disabilities, some with DS. I wish every parent thought like you. So many feel that their child should never be reprimanded because they are special needs. But in my eyes, their child is my equal. So many people look past what their child is capable of. And as for the job, find a good job coach, once he is old enough. Have him help you, with your business, then find other friends willing to give him experience. We have clients who work all over….factories (for real!) Hotels, gas stations, fast food, pet stores, movie theaters……the jobs are the very same that are offered to you and I. And on a personal note, and I hope this doesn’t offend, but sometimes I wish that other disabilities were embraced as much as DS is. Our population (at work) is all types and I love each and everyone of them the same. I love your posts. You are beautiful, inside and out. So is your son. And I think it’s safe to say the same for your husband 😉 Thank you.

Carly Smith - Awesome words.

Pauleen Borgesi-Campbel - You are my sunshine sweet Auggie!! Love you and your parents!!!

Michelle Crandell - He has already done big things. His smile when I see pictures brightens my day. I am a one to one with a DS student. I am thankful for the opportunity to work with him. I agree such a joy,but in our 6 hours together each day we have challenges. Thank you for sharing.

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