You Read it Here First: The Deaf Pre-Schooler Story

Hi Readers! Just had to crow. The story about Hunter, the deaf pre-schooler who was told to change his name because it violated the school’s anti-gun policy, was sent to us by a gal in Hunter’s neck of the woods — Nebraska — on Monday night, which is when I posted and tweeted  it. By Tuesday afternoon, the story had gone ’round the world. Google it — you can’t miss it. On Yahoo’s home page alone it got 17,000+ comments. And despite the fact neither this site nor the one where I’m guest-posting this month, The Agitator, are getting credit (see this),   Free-Range Kids was, as far as I can tell, the first to bring it to national attention.

What thrills me about that is knowing that the press is peeking in on us, and ready to take up the anti-stupidity standard. It’s also thrilling to see how obvious it is to most humans that Zero Tolerance too often means Zero Brains. Hunter’s story may go on to achieve “The Lady Who Sued McDonald’s For Hot Coffee” status (but don’t start debating it here!), used as a sort of shorthand for, “Come on — under the pretense of caring, this is just INSANE.”

We could use a story like that, because it is time to re-think so many schools rules and time to remember our kids just aren’t that vulnerable. For me it is also time to thank YOU, readers, for always sending in the best examples of what’s wrong with the way we treat kids, and what’s right.

Keep it up! – L.

Guest Post: Special Needs & Free-Range!

Hi Readers! Here’s a feisty post from Ellen Seidman, a New York mom whose blog is Love That Max. She’s also hoping to win a blogging contest at Parents Connect, so if you like what you read, go vote for her here. (Hey, why not help each other out?) Onward! — Lenore

WHAT DOESN’T KILL YOU MAKES YOU STRONGER by ELLEN SEIDMAN

The other day, I was Twitter-ing with a mom of another kid who has special needs, and she asked me how protective I was of Max. I wrote, “Not very. If his NICU experience didn’t kill him, nothing will.” I think I may have shocked the hell out of her, but it’s true.

My little boy, Max, had a stroke at birth. And, yeah, until he was born, I didn’t know that babies could have strokes at birth either. But he did. And it put him at risk for all kinds of terrifying things. We were told he might never walk, he might never talk, that he could have mental retardation, and that even vision and hearing problems were a possibility, because of the brain damage. He could have cerebral palsy, too. A doctor told us we could sign a Do Not Resuscitate if we chose to.

As depressed as I was during that first year following his birth, I went into overdrive doing whatever I could to help him. My husband and I got him therapy up the wazoo. We fed him fish-oil supplements, to feed his brain. We tried alternative stuff including hyperbaric oxygen treatment, which entailed either myself or my husband and Max lying in some claustrophobia-inducing tube infused with 100 percent pure oxygen, to spark dormant brain cells. My husband and I used to joke that we were all going to be geniuses.

Max progressed on his own timeline but, most importantly, he progressed. He walked at three. He said some words at four. At seven, he still can’t quite talk, but his vocabulary is growing and he has a cool iPad app that speaks for him. He has trouble using his hands, but he manages. He was diagnosed with cerebral palsy but it’s mild and it’s just an f-ing label. Max kicks butt.

As focused as I’ve been on therapy, I’ve been pretty relaxed about potential health hazards in his life. I mean, yes, we babyproofed the house, he wears a bicycle helmet when he rides his little tractor and I don’t let him play in traffic or anything. But when he was a baby, I didn’t care all that much if he, say, ate a dustball. These days, I don’t obsess about him catching colds or other icky stuff from other kids. I don’t freak out if he bangs his head. So what if he has McDonald’s for dinner two nights in a row? At least he is getting calories because man, this kid is skinny (when you have cerebral palsy, your muscles burn calories faster). I just can’t worry about the little things that could go wrong, because I have some really big, bad things to worry about.

I have a child who went through hell at birth. He is doing amazingly well for himself. He has his physical issues, but is basically healthy and not medically fragile. He survived a massive stroke. He is a fighter. Just like his mama. — E.S.

Max!

Outrage of The Week: Is This Really “Abuse”? Only To Deluded Judge

Hi Readers — Soon I will be compiling stories of Take Our Children to the Park & Leave Them There Day, which went well in parks around the world (well, not a TON of parks, but they WERE around the world and all the participants enjoyed the day). But in the meantime, I just got  this gut-kicking story by a really great reporter, Brendan Lyons, in the Albany Times Union:

Two years ago, Anne Bruscino was a 21-year-old college student studying to be a special ed teacher and working part time at a day care center for kids with disabilities. One morning, as she was about to bring in eight kids from the center’s playground — a playground that is fenced in, faces the center’s big office windows and is protected by security cameras — she got momentarily distracted by one child running off to greet a parent and ended up leaving a 3-year-old girl, Caitlin, outside by herself for five minutes.

After Anne realized her mistake of course she ran out and brought Caitlin in. She also notified her supervisor, and papers were filed. And at last her case — yup, it’s an actual “case” — came up before a New York State administrative law judge, Susan Lyn Preston. Judge Preston’s ruling?

Anne should be placed on New York state’s Central Register of Child Abuse and Maltreatment. She could remain there for 25 years (almost assuring she never works with children again),  because: “Clearly, Caitlin was at imminent risk of harm in this situation.The fact that the playground was surrounded by a chain-link fence does not eliminate the risk that Caitlin could have been abducted. A person with an evil intent could have easily gotten over the fence or lured Caitlin to the fence.”

Readers — this is when I lost it. As sick as I am of a society that insists on perfection in all dealings with children (deeming people “negligent” when they are merely human), it is when those in power buy into the “a child is in danger every single second, no matter how safe the circumstances” that I wonder when we are all going to end up on some registry or another.

Let’s think: What would it actually have taken for the girl to have been spontaneously abducted in the span of five minutes, as the judge so clearly believes was a distinct possibility?

First of all, a child abductor would have had to have been passing by the center at the precise time Caitlin was unchaperoned. Since, according to FBI statistics, there are only about 115 “stereotypical” abductions in the whole country each year (that is, abductions by strangers, intending to transport the child), this already would have been SOME rotten luck.

Then, that abductor would have had to immediately scale the fence, hide from the security cameras, avoid detection on the part of  anyone glancing out the office window, and pray that the child did not utter a single peep that might call attention to the crime. He’d also have to be out of there within about a minute, climbing back over the fence again.

This time while holding a 3-year-old.

Now, I’m not saying this could NEVER happen. If all the stars aligned AND the planets AND the world’s worst luck (and best fence-climber), there’s an extremely slight chance it could. Just like there’s a slight chance of getting hit by lightning in any 5  minutes you sit on your porch. But to say the child was in “imminent risk of harm in this situation” is the equivalent of saying that no matter how many fences, monitors and safeguards we put up, every child is at risk every single second an adult isn’t serving as a physical bodyguard.

That’s a perception that is very common and really off-base. Feel free to look at my previous posts on Stranger Danger, crime going down, and how TV alters our sense of danger, if you’d like to read more about all that.

Meantime, Anne is appealing the judge’s decision. If you would like: Please add a note of support, below, to send to the Times Union, asking that Anne, described by the paper as a successful student, “doting” day care worker  and volunteer with disabled children, be considered not an abusive person, but rather a young woman who sounds like she’d be a great asset to the teaching world.

She could watch my dear ones any day. — Lenore

Wow! Many Kids Possibly Mis-Diagnosed as “Allergic”

Hi Readers! This is news to me: The well-regarded St. Louis Children’s Hospital has a program whereby they take kids who have tested positive for food allergies to see if they really ARE allergic. To that end, they feed the kids a steadily increasing amount of the allergen for hours on end, while closely monitoring them for adverse reactions. Turns out that in about half the cases, there aren’t any.

Well I’ll be a Mr. Goodbar! Another study, published last month in the Journal of Allergy and Clinical Immunology (no, I don’t read it — I heard about it in the same story I just linked to, above), the University of Manchester performed these “food challenges” on 79 kids who’d tested positive, via a skin or blood test, for peanut allergies. Guess how many turned out NOT to be allergic?

A whopping 66 of them! That means only 13 WERE allergic!

The problem — the BIG problem, it sounds like, to me — is that blood tests measure the antibodies present when a particular allergen is introduced, and skin tests measure hives produced by a prick with the food extract. But it turns out that merely producing antibodies doesn’t mean a person will have any other symptoms, and neither do hives produced via prick. Who knew?

Anyway, I alert us to this info not because I want anyone doubting the veracity of another child’s diagnosis, but only so parents can be aware that perhaps their kids are not living under the allergen-covered Sword of Damocles. I only wish it were easier for the kids to take this “challenge,”  to see if they can relax and eat what they want. (Apparently the waiting list can be a year.) Fewer allergic kids could also mean fewer schools having to outlaw peanuts or homemade goodies. Anything that brings homemade cupcakes back into the mix is something I can get behind. — Lenore

Is the allergy test nuts? PHOTO: Gilles Gonthier. CREDIT: http://bit.ly/ctkHiD

Free-Range…with Autism

Readers — This comes from a dad outside of Philadelphia.  Obviously, not every child with autism has his son’s abilities or temperament. But here is one dad’s story:

By Roy Lewis 

Our oldest is now 26…and autistic. When he was 8 we moved to a house in a nice safe suburb that was a quarter mile from a nice, safe 1920s suburban shopping mall with commuter trains and bus service. The idea was that he could have some independence as he got older, even though he probably would not be driving at the same age as his friends, if ever. 

Our son’s disability gave us extra concerns about his safety, his ability to cope with the unexpected, and public disregard and discrimination. That, and the fact that, despite being told not to talk to strangers, he talked to everyone he met. Eventually we had to define a stranger as “someone whose name you don’t know.” So he went up to anyone he saw and said “Hi, my name is Aaron! What’s yours?”
 
We experimented. He wanted to walk four blocks to school. So we let him…and tailed him for the first few days. He did beautifully, so we let him walk to school. Then we began to get calls that he was arriving very late. So we tailed him.

He walked in the gutter, not the sidewalk, stooping every once in a while to pick up something. He greeted every dog by name. He was greeted by name by every adult in every yard and on every porch he passed. He took 45 minutes to walk four blocks. But he was safe, happy, and had built an amazing support network all on his own. And the items from the gutter? Cigarette butts he deposited in the trash as he entered the school.

When it came time to let him walk to the shopping center alone, I though he was ready, but his mother did not. We walked together. We let him go into stores alone. We let him walk ahead. Then, one day when Mom was out, I let him walk alone…and followed, out of sight. This was disturbingly easy as our son is often blissfully unaware of surroundings—this has always been one of our biggest concerns. He reached his favorite store, and I headed home. One white-knuckled hour later he was home safe and elated! Then we told Mom.

 Today our son is fiercely independent. He walks to his job at a movie theater, or rides his bike. He takes public transportation to places I would never have imagined it goes. And he works out the schedules and routes himself—with the aid of the transit help line, ticket agents, fellow passengers, and friends he calls on his phone.

 He is still severely impaired in many ways, but his level of independence astounds us and the parents of his similarly disabled friends. We are grateful that cell phones have come into our lives, as we know that if things go a little too far awry he can call, and has.
 
And now we are embarking on the same journey with our precocious ten year old daughter.

Copyright, Roy Lewis