I'm a Special Needs Parent, Too — But #UnitedWithIvy Mom Was So Wrong

Levine and her adorable daughter, Jo Jo, who’s 6. (Hallie Levine)

As a mom of three kids, two of whom have special needs (one has Down Syndrome and one is legally blind), I’m well aware that vacation traveling with small children — especially those with disabilities — is no walk in the park. But the attention mongering schemes of Elit Kirschenbaum, who took to Twitter last week lambasting a United Airways flight attendant for refusing to allow her to hold her disabled three year old daughter on her lap during take off, make me want to puke.

“She told us that we had to make her sit. And I said to her, ‘I would give my left arm to make her sit, of course I want to have her sit but she just can’t do it,” Kirschenbaum recently told CBS news.

Related: Controversy Erupts After Mom of a Special Needs Child Starts Twitter Campaign Against United

Now, I’m a bona fide tiger mama. I roar whenever I think a child’s — disabled or otherwise — needs are being trampled on, and if I think one of my kids is not getting their fair share of the stick, or is getting the evil eye, folks hear about it. But when I read all these news stories, I just wanted to scream, wrong! Wrong! Wrong!

Kirschenbaum, who used the #UnitedWithIvy hashtag to stir up controversy, with her family. (Courtesy of ABC News)

Kirschenbaum’s daughter, Ivy, has the most serious form of cerebral palsy, quadriplegic cerebral palsy, characterized by extreme stiffness in the limbs (most kids, like Ivy, are unable to walk) and a floppy neck. It’s a devastating condition, and yes, as a fellow special needs mom, my heart goes out to Kirschenbaum, who, I am sure, has spent the last 36 months advocating and arguing for her child.

But last week, she chose the wrong battle.

You see, as any parent will tell you, you have to buy an actual ticket for any child who is over the age of two. The Kirschenbaums’ clearly knew this, as they had six plane tickets (four in coach for their kids, two in first class for themselves). And as pretty much every parent I know knows, during take off or landing your little darlings are supposed to be in their own seat (not yours, not your husband’s, not the sweet grandma type sitting next to you) during take off and landing.

But Ivy has disabilities! Some well meaning folks might cry. How can a child who can’t even support her own head sit up by herself?

Well, there is a solution. It’s called — gasp! — an FAA approved car seat.

Special Tomato MPS Car Seat (Especialneeds.com)

Presumably Ivy rides in a car seat whenever she goes to the supermarket with her parents (we hope), and in fact, I did spot an Internet photo of Ivy riding in an infant carrier seat on the back of her dad’s bike. There are even FAA approved car seats specifically designed for kids with conditions such as cerebral palsy. (Note to Elit: I found two, the Special Tomato MPS Car Seat and the Tumble Forms Carrie Car Seat.)

Not surprisingly, pediatricians I spoke with seemed quite baffled as to why Elit Kirschenbaum didn’t have one with her on the flight.

“The parents were completely in the wrong,” says Dyan Hes, MD, Medical Director of Gramercy Pediatrics in NYC and a Clinical Assistant Professor of Pediatrics at Weill Medical College of Cornell University. In fact, the Dr. Hes was actually concerned about the safety of simply holding little Ivy during the flight: “The concern for a kid with this type of CP is if she’s not sitting correctly, her neck can fold down and obstruct her airway,” she says. “The bottom line is there are plenty of things the parents could have done to make sure Ivy was sitting correctly: They could have brought her car seat, they could have bought a five point harness system to attach to the airplane seat to help her sit properly, they could have even insisted the airline sit her in her wheelchair if she had one,” Hes points out. (All U.S. planes with over 60 seats must have space on the plane for a wheelchair that they can lock securely in.)

While I’m not a detective, or a mind reader, my guess on what happened is this: the parents upgraded to first class and stuck their kids in coach, not so they could leave their four screaming, sniveling, crying darlings in economy for some kindly stranger to babysit while they got blissfully blotto on free cocktails up front, but because they had planned to hold Ivy throughout the flight and wanted to have a little extra leg room for the ride. They even admit they’d gotten away with it before. But when a certain flight attendant (a.k.a. Ms. Grinch) became a stickler for the rules, she unleashed a monster — literally. Before Kirschenbaum took her twitter feed down, she proudly stated she’d told a certain flight attendant she’d be out of a job.

Could the flight attendant shown more tact? Probably. But while she may have crappy social skills, she was in the right: federal safety regulations clearly require any child over the age of two to have their own seat. She might have been a b**ch, but she was just doing her job. The parents reportedly fought with the attendant for an hour — delaying the plane and forcing some passengers to miss their connecting flights — until the pilot finally emerged from the cockpit and suggested Ivy lie belted across her father’s lap for the duration of the flight.

Related: Trapped on the Runway: Airplane Delays from Hell

When I heard about Kirschenbaum’s threats, any iota of sympathy I had for the women vanished. Poof! Right in thin air. As much as I hate to crap all over another special needs mom, it’s hard to feel sorry for someone who feels so entitled that the rules of the common folk (a.k.a. economy class) don’t apply. Admit you were wrong, beg a car seat off of someone, or even get off that flight and head to the nearest Walmart to find a car seat that fits the bill. It’s your kid, lady. Doesn’t her safety count for anything?

As far as I’m concerned, the airlines are partly to blame, too, not because they laid down the law for Kirschenbaum, but because they let her get away with her behavior for so long. “Unfortunately, the airlines didn’t help because they were sending her mixed messages by allowing her to fly so many times with her child in her lap without ever saying anything,” points out Lisa Thornton, MD, Director of Rehabilitative Medicine at La Rabida Children’s Hospital, a Chicago hospital which focuses on kids with disabilities.

Even national disability organizations don’t seem particularly moved by Kirschenbaum’s plight. “Without knowing all the facts of the case, it is probably safe to say there was no discrimination,” says Shelly DeButts, director of marketing and communications of United Cerebral Palsy. “It seems to be a big misunderstanding with missteps along the way with both the parents and the airlines.” That’s why it’s so important for parents to be proactive when traveling, she stresses, calling the airline or hotels beforehand and making clear the needs of their child and what accommodations — if any — they’ll require.

The irony is there are plenty of stories out there about airlines discriminating against people with disabilities: a 16 year old with Down Syndrome, for example, was booted off an American Airlines flight in 2012 after the crew decided he appeared too agitated to fly; and in 2013 a blind man and his guide dog were thrown off a plane (the rest of the passengers followed in a heartening mass protest). But the escapades of a spoiled, 15-minutes-of-fame-coveting Jersey Housewife who can’t be bothered to strap her disabled daughter into a car seat for her own safety, well for me, that doesn’t make the cut.

Armed with all the new info I’d learned, I reached out to Kirschenbaum via email, but got no response, and since she appears to have deactivated both her twitter feed and Facebook page, apparently she’s decided to halt her campaign against United and focus her attention on other interests and causes. Hopefully she’s actually out doing something useful. Like, packing a car seat.

Related: No Kiddie Pools Here: Romantic Hotels Where Small Children Aren’t Allowed

Video: Family of Special Needs Child Slams United

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