'Different does not mean less': Pinckney mom has a message for her community

PINCKNEY — When Ethan Lambert was a toddler, his parents noticed he was missing developmental milestones.

Born happy and healthy in March 2018, Ethan wasn't walking or crawling by his first birthday. He wasn't talking, either.

A couple of weeks ago, Ethan and his wheelchair were loaded onto a Pinckney Community Schools bus. As her son pulled away, Kassondra Lambert heard a man yell from his car, which had been stuck behind the bus. "We're getting going somewhere now, aren't we?"

It was like a bucket of ice water had been dumped over her head. And it was far from the first time.

Ethan has KIF1A Associated Neurological Disorder, also known as KAND. It's a rare genetic illness that's both progressive and degenerative. There's no treatment and no cure. And there's no way of knowing how long Ethan has.

But that hasn't stopped his parents from moving forward. Ethan, now five, spent two years in Early Childhood Special Education in Howell Public Schools before starting kindergarten in a general education classroom in his Pinckney hometown.

"He's mainstreamed, so he's the only kiddo that looks like him in his class, so now we're learning how to navigate the very open conversation about his disability," Lambert said. "For the other kids to see this iPad he has and his special accommodations and his wheelchair ... we're also navigating that with other community members, which has been eye-opening."

And not in a good way.

"When people have something to say, sometimes it's just pure ignorance that I can handle for the most part," Lambert said. "But sometimes I'm so taken aback, I don't know how to handle it. When Ethan was four, we were staying in a hotel near my hometown and my husband, my son and I stepped into the elevator with this grown man and his son, who was maybe six or seven.

"He started making small talk and made comments about volunteering with Special Olympics and how he used to be involved in that community. Somehow, that turned into him looking at me and saying, 'I hate to ask this, but what's wrong with him?' And I, in that moment, was able to squeak out, 'There's nothing wrong with him.' I remember feeling, in that moment, this sense of panic, because I wanted to protect Ethan from what he just heard and saw."

Ethan, who communicates with the aid of his iPad, still understands what's being said around him. Lambert was shocked that wasn't clear.

"I felt this sense of rage, because how dare you say anything is wrong with another human?" she said. "And then I feel a level of disgust because people don't understand why it's not appropriate to ask about people's medical history, why it's not appropriate to point something like that out.

"I think people forget we're not that far away from when humans were institutionalized for being physically different or needing a wheelchair or having mental health issues. We really aren't that far from our own humanity."

Lambert tries to look on the bright side, enjoying the best things about her son. The way he's gleeful and happy and silly. The way he's ignorant to the grief of the world. The way he doesn't understand he's being excluded.

"No one else knows the path of their own kid, and we don't ever imagine them as addicts or getting in a car accident ... or any of the life-altering things that can happen," Lambert said. "And while Ethan's journey is so different, his end goal is no different. It's certainly changed the way I look at life."

But sometimes, particularly when she's advocating for her child, time feels of the essence. For years now, Lambert, who lives adjacent to Pinckney High School, has felt there should be a sidewalk along her street. It would make loading onto the bus easier for Ethan.

Dexter-Pinckney Road isn't slow-going, either. The number of times a car has sped past her child's bus, Lambert said, is astounding. She's talked to the county, to her son's teacher, to his support team at school, to the superintendent.

"I struggle because, if the solution was easy, it would've been solved," she said. "I think it could be solved by restructuring the road, turning the area into a school zone, reducing the speed limit."

But those things take time.

"It takes a long time to make change," Lambert said. "And time has never been on our side."

But while official action is slow going, Lambert said, there are things her neighbors and fellow residents can do now. For starters, being patient.

"I think, in general, humans have gotten really bad at being bored. We're really busy and we're always going and we're always on and it's really difficult to be patient. But it's OK to sit in your car for a few minutes, waiting for the bus, waiting for a train, waiting for your food."

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As for the man in the elevator?

"Realize you're talking to another human," she said. "People are not less than one another."

She smiles as, in the midst of the hurt, she recalls her son's unwavering happiness.

"Different does not mean less."

— Cassandra Lybrink is the local editor of The Livingston Daily. Contact her at clybrink@livingstondaily.com. Follow her on Twitter @CassLybrink.

This article originally appeared on Livingston Daily: 'Different does not mean less': Pinckney mom has a message for her community