Argh!

[rivka]

Last week, instead of going to story hour, Emily and I took the babies to "Development Days" at Kennedy Krieger, which is Johns Hopkins’ developmental disabilities institute. The ad for the event promised a fun day of games and play for moms and babies "under 24 months," and promised that we would each get individual feedback on our child’s development, from their screeners. Emily and I thought we might learn some new ways of playing with the girls, who – let’s face it – are slightly boring sometimes. And developmental feedback sounded like it might be interesting, although neither one of us has any concerns about delays.

Well, we got there and found that "games and play" meant that waaay too many kids were crammed into a playroom with toys and just let loose. Most of the kids were enough older than Alex and Zoe that we were constantly worrying about the girls getting stepped on or fallen on. There was no structured program, which was our first big disappointment. Then we learned that the whole thing was about language development only. The woman running the event gave a few very basic, elementary comments about when language develops and how to facilitate language learning. We discovered that the purpose of the event was to identify children who are a wee bit late starting to talk, and to include them in a research study.

So they gave out a standardized language development screening questionnaire. Emily’s baby was too young for her to even be handed a copy. They asked me "is your baby making sounds?" and then gave me one, but it was pretty manifestly inappropriate. They wanted to know which phrases my baby seemed to understand, and I was able to check some of those, but most of it was devoted to listing the words a baby might say. Our only developmental feedback, it turned out, was that they were going to score the standardized questionnaires and call us with the results. Emily and I left feeling irritated that they hadn’t specified a lower age limit for the event, and sorry we hadn’t gone to story hour.

They didn’t even call me. I got a grossly inappropriate form letter today which informs me that "you told us your child says 0 words…your child’s scores do fall just outside of the range that is expected for children that are a few months older than your child. Because your child is not yet 18 months, it is quite possible that they are just shy of the "typical" burst in his/her language."

Or maybe she’s well shy of the typical burst in language, given that she’s SEVEN MONTHS OLD.

They have no business sending out a form letter that totally sounds like they think Alex might have a language delay. If she’s outside the age range for the fucking test - and it would completely fail to surprise me to hear that she is - then they should have said so and refused to give her a score. Or they could have provided me with a score based on her receptive language (the words she understands), given that some of those questions I could answer. It looks like they didn’t score that part at all, probably because it wasn’t the topic of their study.

This is completely irresponsible. It violates the ethical standards for the use of psychological testing. I can’t imagine how scary this would be if I didn’t have a pretty firm grip on cognitive development. Jesus Christ.

I have called and left an irritated message. Hopefully this post will get the profanity out of my system before they call me back.

Comments

[wcg.livejournal.com]

I have full faith in your ability to politely rip their heads off in a manner that will have them thanking you for the experience.

[electricland.livejournal.com]

Oh DEAR. That's no good. I'd have expected Johns Hopkins to have a better grip on running a research program!

I wouldn't bother getting the profanity out of your system, either. Grr.

[casperflea.livejournal.com]

I have done a couple of rounds of a study by mail - they've never seen Casper. Last week we got a questionnaire that included a list of words she might say, in rough order of complexity (starting with "dog" and "baby" and going to "could" and "wish.") Halfway down the first column was "coke". So, "coke" is a simple noun that most babies 2 years old probably know? Okay, my kid can pick you out Mickey Mouse and Cinderella despite the fact that we hardly watch TV, but let's try not to make our diagnostic tests reflect the corporatization of America, shall we?

[richtermom.livejournal.com]

Maybe that's part of it, though. My 21 month old can tell the difference between the two grocery stores we go to, and she can see which cereal she prefers, and she likes specific shapes of pasta. Another problem is that in some communities, "coke" MEANS "soda pop." If you order a "coke" there, they'll ask "what kind?"

Wacky, zany.

Other than that, I hope that SOMEONE lets loose WITH the profanities at them because maybe they can then look them up and realize the deep emotional outburst they're receiving.

[ailbhe]

My daughter isn't even aware that drinks cans contain anything important. She will beg and plead for bottled water or cartons of fruit juice though. She doesn't know the word "coke" (nor "soda", but that's not a common word here).

She can identify the logo of a particular rail company as "train!" though. The logo does not depict a train.

[richtermom.livejournal.com]

Squeaky knows about bus stops, but that's not a huge surprise since they actually show a bus picture. She also knows "no parking" and "stop", but I'm hard pressed to remember a logo right now.

Unfortunately, probably the most likely would be the McDonalds arches. She hasn't been there often, but there is one right next door to the library, and the sitter has stopped there like twice in the past four months with her.

[journeywoman.livejournal.com]

Parents have enough to worry about without receiving alarming letters like that. Especially since they're studying potential developmental delays, they need to be sensitive to how parents will interpret their informational materials. These are people being studied, not rats.

Development markers

[ailbhe]

I look forward to hearing what they have to say. I trust you'll let us know :)

This is pretty scary. I was looking in the What To Expect The First Five Years book the other day, and it turns out Linnea is just barely average in her development, and the other three toddlers I know her age are all retarded. Except for the places they are at the three-year-old level. I have no idea how they are getting the information for the developmental markers, but it's not from studying mothers and babies in the UK. It's strange, because the first two books were adapted for the UK quite nicely, and the developmental markers matched the standard UK healthcare ones too.

Here, they want babies to have at least 2 and preferably 6 words by the time they are 18 months old. They refuse to say what is "normal" beyond that, though I know no 18-month-olds with that few words. They also refuse to assess until the babies are 24 months. I suspect this is a good thing.

Re: Development markers

[porcinea.livejournal.com]

Is that 'have words' as in say them, or understand them? 'Cause Mr. X doesn't talk much at all. He says "no", and "da", and "dog" and "duck" (same sound), and I hear he's saying "Nana" uptown. That's now, at 22 months. At 18, he only had "no" and "da" and "dog" (which sounded a lot like "da").

(I mock anyone who worries, btw. He's a boy. He'll talk when he's ready.)

Re: Development markers

[ailbhe]

"no" and "da" would be enough to have them tell you to stop being silly and worrying. It's words as in "attempting to say them".

I believe signs count too.

[silmaril.livejournal.com]

If their reviewers note that their research included data from kids wildly outside their should-be-target-age range and thus that their results are wildly skewed, that will be a nice revenge, no?

[rivka.livejournal.com]

Oh, the screening instrument isn't part of the actual study. They're not using it for anything except to identify eligible kids, so it wouldn't be an important element of any papers. Alex isn't eligible for the study because she's way too young, which brings me back to the part about how they should have specified a more precise age range.

[perceval.livejournal.com]

Un-fucking-believable. They should be visited by the Deity of bad subject karma.

[aloha-moira.livejournal.com]

That's ridiculous... it seems they are manipulating moms into the study by preying on their fears that their baby might not be normal. Give 'em hell.

[klwalton.livejournal.com]

Jesus jumping on a jet-propelled pogo stick! *sigh*

I echo Bill's sentiments above. Let 'em have it!

[therealjae.livejournal.com]

Wow. What a completely irresponsible thing to do! I hope you sock it to them with the full weight of your expertise (waving the Ph.D. in their faces, if necessary).

-J

confused

[(Anonymous)]

You wrote, "I got a grossly inappropriate form letter today which informs me that "you told us your child says 0 words…your child’s scores do fall just outside of the range that is expected for children that are a few months older than your child. Because your child is not yet 18 months, it is quite possible that they are just shy of the "typical" burst in his/her language."

Followed by, "They have no business sending out a form letter that totally sounds like they think Alex might have a language delay."

The form letter states that Alex scores just outside the range of children that are, not her age, but a few months older than she is. It also mentions, generally, about a language burst that occurs at 18 months. All this makes sense. Alex is younger, and rightly scores younger. And, I agree with you. She doesn't sound like she was in their target age. There are actually very few quality pre-language tests available. Language development is a largely a wait-and-see process until the child reaches a certain age.

Yes, it would have been nice if they would have given a more particular age range in their ad. And, yes, it sounds like they had a bigger turn out than they planned, and things were chaotic. Yes, they should have specified that the developmental playtime had to do with language.

But, I am so confused by how you can read that form letter...admittedly brief and non-personal...and decide that it's tone suggests that they "totally" think Alex might have a language delay. It doesn't sound that way at all to me. These people may be a bit disorganized, but they hardly sound evil.

You went to a playtime at a developmental disabilities institute that was advertised. Upon arrival, you found it full of older babies, chaos, screeners trying to set up a study for language delays, and a standardized language device that you identified as barely appropriate for Alex's age, which, despite the limitations, you filled out as best as you could.

I understand how you were disappointed, but why are you so furious? You know Alex is on target, and you knew that going in. It's pretty simple: You(through no fault, but because of what sounded like a great program in an ad)sampled a free program, and you ended up disappointed, and with a form letter.

All you missed was a story hour. And, of course, you do have a right to your feelings. I'm just saying, some of those mothers attended the same program you did and just found out that their children have serious language delays.

Re: confused

[rivka.livejournal.com]

I agree that, if you read the letter closely, the part about Alex's scoring makes it clear that they don't think she's outside the range for her own age. But the fact that they're comparing her to the range for babies who are a few months older, and finding her wanting, makes it sound as though there's a problem with her. There was another part I didn't quote which said something about "if she's still outside the expected range at 18 months, we can enroll her in the study then."

As a mother, I wasn't afraid for Alex's development upon reading that letter. As a psychologist, and as someone who has given psychological tests for a living, I am angry because I think the letter would be read by many, or most, mothers as evidence of a delay. They made an inappropriate comparison using an inappropriate test, and that was unethical. It really bothers me to see someone do my job badly, and in a way that - were I someone else - could have caused me real fear.

Yes, of course, compared to someone whose child actually is delayed I have things quite easy. (I'm not furious, actually, just pretty irritated.) That doesn't mean that I shouldn't deliver a sharp professional rebuke to someone who is using tests in a sloppy and unprofessional manner.

Re: confused

[ailbhe]

In order not to cause a lay mother that fear, they should have phrased it "Babies of your child's age are not expected to speak any words at all." Anything implying that it would be normal for a 7-month-old to have one or two words, or be approaching a "burst" of language, could cause any mother with normal maternal doubt real fear.

I feel similar annoyance when other pro-breastfeeding mothers frighten new mothers or make them feel guilty by giving almost-but-not-quite accurate information (such as "you can't have low supply because it's a vanishingly rare condition" or "it doesn't hurt if you're doing it right, ever"). I am a pro-breastfeeding mother who likes to encourage people to breastfeed, and to support them when they try, and I don't think scaring them or guilt-tripping them achieves anything useful, and it gives the rest of us a bad rep.

Re: confused

[(Anonymous)]

As a lay mum who reads up but isn't all that secure in her knowledge I can say that a form letter like that might well worry me.

A form letter could easily include a little chart on the bottom with something like "0-12 months: no words expected" (or whatever), given that they knew they were drawing in kids from a wider age range.

I think it's probably helpful to the programme to get the feedback anyway too.