How NOT to Speak to the Mom of a Special Needs Kid

Ashley and I were the last hangers-on from a fun play date at a popular local playground. The restaurant by the playground is relatively cheap and delicious, so there are always a passel of parents there with kids. And it tends to attract a particularly Austin-y crowd: diverse, hippie-ish, a little granola. Ashley and I were having a good day. We each have spirited children as well as children with special needs. We’re both moms in the trenches and we like to be in the trenches together.

One of the things I love best about Ashley, that I’ve learned the most from her, is her unswerving desire to do what’s best for each of her kids. She is not a helicopter mom in all the best ways—life is hard and she’s committed to helping her children figure out how to face life head on. But that takes a lot of energy and commitment. 99.99% of the time, Ashley lives her life at high alert.

I do too; I can’t even remember what it’s like to walk into a room without scanning for the triggers that will set my kid off. That’s part of what’s refreshing about friends like this. When your kid throws a fit, these are the kinds of friends that say, “But look, that fit only lasted 3 minutes! And your kid with sensory issues just put a wet shoe on her foot like a champ! Let’s celebrate!” It’s a gift to have moms like this in the trenches with you.

We were lingering over lunch and chatting—a rare quiet moment while the kids played—and I went to go check on my little one. She was playing sweetly (a miracle!) and I was headed back to the table when another mom on the playground approached me.

“Do you know this kid’s mom?” She gestured swiftly toward Ashley’s spunky son.

“Yes, my friend Ashley over there.”

“Well, I need to talk to her.” I scooped up Ashley’s spunky son, grabbed the water bottle on the ground, and headed back.

When I got there, the conversation was already over. Here’s what Ashley heard: Your 3-year-old son was spraying water on some other kids. He made my son cry. He sprayed my shirt with water. Your son is a bully. You need to take a moment with him.

Ashley apologized and by the time I stepped up with her spunky son and water bottle in tow just seconds later, she was already gathering our stuff.

She told me what happened and I started shaking I was so angry. This woman on the playground had no idea the mountains that spunky son and unswerving mom climbed together just to arrive on the playground that morning, but I do. And to tell a mom like Ashley—devoted, on her kid’s level, intentional—to ‘take a moment’ with her kid? It was too much.

Ashley said in a text later, “Every time we step out our front door it feels as though we are a nuisance or bad parents or, much of the time, both.”

That is the feeling that I cannot explain if you are not walking in these shoes, that I didn’t expect when we adopted our kid with special needs: the utter humiliation you feel some days.

If modern-day parenting is based on intentional parents, then kids that act up are the result of bad parenting. I saw that view that with my biological daughters, the spirited ones, when people would give me advice or give me looks when they were throwing fits as small kids. But we went to whole new levels when we brought our daughter home, the one whose pain was so high the first few months she could barely function, who didn’t understand us and whose hearing loss was much more profound than we knew. Of COURSE she threw fits. I know what my kid has gone through; believe me, I would throw fits too. Her fits have nothing to do with my parenting, but my parenting is on trial in every public situation in which she responds with a natural inclination to fight the horrifying things the world has done to her.

Ashley’s son has different mountains than my daughter does, but he is a climber and a fighter and one heck of a kid. Every sentence he utters—five and six words in a ROW while he shares his feelings! Every direct look he gives—engaging in the world and making contact with the people around him! Every transition he makes—doing something he needs to even if he doesn’t want to! All of these are nothing short of a miracle. The last six months have been outstanding for this kid. He’s doing it, doing all the things he needs to.

He’s three. For heaven’s sake, he’s not a bully. He’s a courageous peanut of a fighter. He has spiky hair that would make any rock star jealous. His little body is jam-packed with energy and he knows how to use it to run fast and climb high and jump up up up.

Ashley and I packed up the kiddos and took them to the duck pond. As we walked, I saw the woman who had confronted Ashley sitting alone beside the playground. I asked Ashley if she was OK with me sitting down and visiting with that mom.

(That poor woman. She had no idea.)

I plopped myself down in the grass in front of her, hands clasped, face turned in a friendly, non—threatening way. I know this because Ashley snapped a picture of me.

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“Hi, I’m Jessica. I just wanted to meet you and chat for a minute. Do you mind?”

Her guard was up. It was never going to go well, but I tried. I told her about our family first, how our daughter’s special needs and developmental delays mean that she can often be the source of mayhem in any situation. I told her about my friend’s spunky son and his communication skills. I agreed that no one should have water sprayed on them without their permission—of course! (Though secretly I laughed a bit—I mean, it was water. Also, it was hot. Water sounded kind of good.) I continued to push: no matter what, no 3-year-old is a bully. But in this situation, this particular tenacious, intentional mom is a great one and she missed one moment that she took care of immediately. To tell her that her son was a bully was hurtful; maybe a different choice of words in the future would help.

This woman wasn’t having it. (And let me be clear–I have a lot of compassion for her too. I have no idea what she was facing that day as well.) But her son was crying, her shirt was wet, and therefore, that spunky son was a bully. And then she said the clencher, the line that made me get up and walk away abruptly: “If her kid has special needs, then that mom needs to do even more—she needs to watch him all the time.”

I can’t even remember what I said, something like, “This isn’t going to end well. Thanks for your time.”

But I cannot, and I will not, agree with that statement.

***

We literally had a checklist of special needs before we adopted our daughter. When I told one of my friends whose daughter had severe medical issues in her early years, she laughingly asked, “Where was my checklist?”

I mention the checklist to say, we came into this kind of parenting with our eyes wide open. Our daughter’s most critical issues to this day are not her special needs but the lack of a parent in her life for three years. We don’t know what healing looks like, but we are committed to this path.

(And the checklist was a way for adoption agencies to make sure parents have thought everything through well in advance; it’s a questionable tool—I can both defend and condemn the checklist—but I’m a fan of adoptive parents having access to information in advance because this road is hard enough.)

I have several friends in my life who have never had a choice in their path. This was not what they thought their lives would look like. But they get up every day and turn themselves inside out for their kids. They research conditions and interview therapists and become experts for their kids. They advocate and advocate and advocate.

It is exhausting, the part of it that is mine, more exhausting than I could ever have known. But I watch the women and men in the trenches with me, some of whom will spend their entire lives advocating for kids, and I admire them more than I can say.

They watch and help and listen to and communicate with their kids with every fiber of their being all day, all the time. There is no down time. There is only go.

These kids are not objects of pity nor are they moral lessons for typical folks. They’re people. In Ashley’s and my case, they’re very small, very adorable people. And while some people get up, put their clothes on and walk out the door, our little people get up and face a bewildering set of obstacles between their bed and the door or between the door and the rest of the world. The obstacles might be emotional—losing everything before the age of three is not something you ever get past. The obstacles might be sensory-related—raspy fabric and loud noises and bright lights trigger some of these little ones beyond their capacity to cope. The obstacles might be physical—moving your body in the right direction is hard, staying on task is hard, not being distracted is hard, all harder for some people than others.

I can’t tell you all the obstacles my girls climbs every day, or the ones faced by Ashley’s spunky son, but I will tell you—a mother who stays on the mountain with her kid, who teaches him how to face the thousands of obstacles typical kids don’t face, deserves better than being told how to parent her kid.

She deserves a friend who sits down with a woman and gently corrects the label from ‘bully’ to ‘child.’

She deserves to know that her children are not a problem but a cause for celebration, that their hard work is paying off, that they are perfect exactly the way they are, and that even if they occasionally throw water on a playground, they’re still pretty great.

And occasionally, she deserves a stiff drink and a massage.

***

If you are around a mom whose kid climbed a mountain of obstacles to walk out the door, never give her advice (unless she asks and you know what you’re talking about). NEVER label her baby a bully (in fact, in my opinion, bullying is not a term for the preschool set).

You tell your friend she’s the queen of the world. Give her kids fist bumps if they’re up for it. Praise their fantastic behavior—even breathing in an even-keel is a big deal some days. Bring her coffee and chocolate and delicious snacks. Plan play dates and yes, sometimes, confront the other moms on the playground who don’t get what she is dealing with on a daily basis. I’m not saying it’s easy; I could never have had that conversation on my behalf.

But for my fabulous friend whose parenting is the standard I strive to follow? It was easy. The world needs to know the kind of mom Ashley is, what I learn from her, what she has to teach others. And on the off chance that another person has the gall to assume she knows what kind of parenting tools Ashley and other moms like her need to use, well, someone needs to let them know what’s what, kindly but firmly.

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