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Shaming people who hurt your kid with Down syndrome doesn't help your child

Maureen used to be obsessed with baseball -- and then she had children. After she welcomed her son, Charlie, and his extra chromosome, she discovered her passion for writing about Down syndrome and disability-related issues.

With two tod...

When your kid has Down syndrome, shaming the world is the last thing you should do

Being a mama bear is tough, period. But when it comes to advocating for my 6-year-old with Down syndrome, the slightest poke can feel like a searing slice through my heart. I feel so much for the mom who posted an emotional letter online after her child with a disability was the only child not invited to a classmate's birthday party. She lashed out at the other child's parents and her message went viral.

While the outcome was a very kind and personal invitation wrapped up in a Kumbaya, I couldn't help but think how another strategy might have worked well too — and with fewer sharp edges. I'm by no means a perfect parent or advocate, and it's often so tempting to splash every last emotional detail on social media and wait for torches to congregate on my behalf. In fact, I've done that and regretted it.

In fact, this is how I've learned to step back and look at the big picture by asking one critical question: Do I want or need to preserve the trust of the person or organization I’m about to question?

More: Why I stepped into a fight to protect my kid

Having been there, done that, here are my top tips for responding to those mama bear instincts based on my own mistakes and successes.


I know, such a cliché... but I've watched parents burn every last bridge to their child's education and happiness because their approach spewed fire and anger publicly, widely and without reservation. When something stokes the flames of my protective mama heart, my knee-jerk reaction is to channel Braveheart, raise my sword/sippy cup in the air and emit animal-like growls, screeches and screams. And for some reason, that reaction seems to feel most excessive only after I’ve done it, when parents and teachers alike are stopped mid-activity and slack-jawed in the school foyer. Expert tip: The best advocate is not the one being held for observation at a local hospital (with all due respect to Shirley MacLaine and that pivotal scene at the nurses' station in Terms of Endearment; if you haven't seen this movie, go now. Do it.).

Tap into your tribe — but know them first

I’m proud of the diversity of my friendships, from cheerleaders to drama queens to somber advisers to kettle corn and Cabernet response teams. As important as it is to have a variety of minds to pull from, it’s critical to know which ones won’t urge mama Braveheart into battle solely because it would be cheaper entertainment than Netflix. When I need to craft calm, reasonable tactics, I have a shorter list of confidants. And by confidants I mean my own mommy and daddy. OK, it's broader than that, but I trust them the most to field my irrational responses.

More: If you're a white mom with biracial kids, we should talk

Prepare for the worst but open your mind to the best

When my son Charlie came home from school with an angry red mark across his shoulder, Braveheart mama emerged for about two hours, dancing wildly by firelight (the microwave) and slathering war paint (ketchup) on my cheekbones (pants). But then, I tapped into my tribe and talked through my response. Had Charlie been intentionally hurt? It was possible but not probable. Did the situation warrant a response? Yes — but carefully measured. I honestly love and trust his school team and my gut whispered the infraction had been an accident even while my heart and brain collided into a furious storm of overreaction.

Employ Raze-the-Earth emails minimally

I wanted to email the universe, God and Madeleine Albright (not in that order) demanding an investigation into the mark on my son's shoulder. Then, I talked it out with my parents and my husband. I especially trust my mom's instincts because she taught first grade for eons. She was one of the best, and if her instinct wasn’t to go for blood, then I knew mine shouldn’t be, either. She gave me the best advice: Address this in person. Emails, plain and simple, are the worst communication tool to effectively convey emotion. Punctuation can cut like razors — and you can't fully heal an invisible wound. If something happens that is so upsetting I know I have to address it, my new tactic is twofold: Sleep on it, and then handle it in person.

Stay calm and ask your partner to do the same

My husband and I calmly brought Charlie to school the next morning, coaching each other on the drive to remain calm and reasonable. "Good cop/bad cop" only works in TNT crime dramas; we needed to know the other would stay calm and on point. What resulted was perhaps the strongest show of teamwork we've had as parents. We had the most productive, supportive conversation with the school principal. When she asked if we thought a staff member had hurt Charlie purposely, our response remained factual: We simply did not know what had happened but knew we needed to address it with school leadership as our child's best advocates.

More: 24 baby freebies you'll want to get while the getting's good

Now, emails definitely have their place when it comes to advocating for my child with special needs, but not necessarily just because we hit a snag. I decided long ago that if I was going to be willing to send a raze-the-earth email about my concerns, then I needed to be equally dedicated to sending a hallelujah-and-praise-God email, as well. I know I take criticism and concern much more seriously when it’s delivered by someone who will also take the time to tell me I’m doing something right. Plus, I think it’s wise to keep school administrators on their toes and wondering: Will this Mama Bear’s latest email espouse the virtues of my team and catapult us to Pulitzer Prize winning status, or am I going to need an extra visit with my therapist this week?

I’m partially kidding on that last one. I think there’s some merit to letting people think you’re just a little bit crazy. Honestly, isn’t a loss of sanity the very nature of parenthood?

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