Thank you all so much for the kind messages of support that you shared privately and publicly yesterday. I am encouraged and inspired by the stories you shared about your own experiences with kids and labels.
On the subject of labels…another label that was thrown about when we first began seeking help for Carlos was “significant developmental delay.” He had just turned three but was talking like a two year old. When kids his age are slow to communicate it can be due to autism, speech problems, or significant developmental delay (SSD). Or a combination. It really is difficult to tell whether they don’t know how to speak or don’t grok why we speak. Maybe Peppa Pig is on and they just don’t care to speak.
Now, you better believe that when I heard that phrase uttered by the school psychologist, I heard something along the lines of, “crippling developmental delay,” or “life-shattering developmental delay.” I imagined that my sweet-voiced boy would wake up one morning and say, “Hodor!” and that would be it. “Hodor hodor hodor.” (For those of you who don’t read/watch Game of Thrones, Hodor is a gentle giant who can only say one word. Yep, you guessed it–Hodor.)
After a few days of being afraid to even look at the paperwork that had Significant Developmental Delay listed as a possible situation, my lifelong curiosity about words broke through the blaring sirens of panic echoing between my ears. I parsed the phrase.
NOUN: Delay–yeah, I get that. He’s behind on the sentence making.
ADJECTIVE: Developmental–okey doke. He’s hit some milestones but others are still ahead of him. He’s developing at his own pace.
INTENSIFIER ADJECTIVE: Significant–ugh. That’s where life implodes and all I can see is a wall of white light and Carlos living in our basement for the rest of his life.
In my English major brain, “significant” means: consequential, earth-shattering, eventful, historic, momentous, monumental, tectonic, weighty. (Thank you, Merriam-Webster thesaurus!) When I mentioned my fear of this label being stuck on our kid, G and his scientist brain said, “Wait a second! ‘Significant’ means something worth noticing.'”
WUHT?
He started in on statistical significance, standard deviations, black magic statistics, Greek symbols. But he was right. “Significant” doesn’t mean cataclysmic. If I skim all the way down to meaning #5 in the dictionary, significant means “sufficiently large in size, amount, or number to merit attention.” Well, shucks. That doesn’t say anything about my basement. The synonyms for this meaning are downright cuddly: biggish, healthy, respectable, sizeable, substantive, good, tidy.
Would I have gotten less freaked out if the form said “Biggish Developmental Delay?” Probably. This lesson in semantics reminded me of the danger of labels for people: words mean different things to each of us. A school psychologist means one thing when she says “significant” and a mother hears a different thing, while talking about the same tiny person.
My friend, Wise Heather, shared an interesting article today: 10 Scientific Ideas That Scientists Wish You Would Stop Misusing. In light of my struggle with significant, number seven struck a chord.
7. Statistically Significant
Mathematician Jordan Ellenberg wants to set the record straight about this idea:
“Statistically significant” is one of those phrases scientists would love to have a chance to take back and rename. “Significant” suggests importance; but the test of statistical significance, developed by the British statistician R.A. Fisher, doesn’t measure the importance or size of an effect; only whether we are able to distinguish it, using our keenest statistical tools, from zero. “Statistically noticeable” or “Statistically discernable” would be much better.
For the rest of this journey, I will be cool if my son receives extra help at school because he has a Discernable Developmental Delay. I want him to be comfortable in the world.
With the progress he’s making, I’ll also be cool with buying him a thesaurus for his fifth birthday. Either a thesaurus or an erector set because Dude is wild about the mechanical toys! I find that…significant.
Glad to lend an accidental hand. 🙂
Never an accident! You’re always there when I need a shift in perspective.
Gosh Ashley, so sorry you are going through all of this. When i was pregnant with Garrett (about 8 1/2 months into it), I had a routine ultra-sound done. By this time, i knew the reactions from the sonogram person, that i was to expect from a “normal ultra-sound.” However, this time, she looked at me, looked at my stomach, looked at the screen, looked at me.. and then said those terrifying words “I need to get the Doctor.” I lay there wondering what on earth could go wrong THIS FAR into my pregnancy. The Dr. came in and explained they were seeing a shadow at the base of his skull and suspected it to be fluid. FLUID on the BRAIN…HYDRO CEPHALIC.. WATER HEAD BABY… all of those terms were floating through my own brain. But worst of all, i knew it was my fault. I had lied to everyone and was still using drugs. I was terribly addicted to opiates and knew this was the cause of the shadow..fluid…whatever anomaly this was. My poor, innocent baby would be punished for what i just COULD NOT get control of. We made an appointment with a specialist in Macon but couldn’t be seen for a week. James and I lay in bed for a week crying, wondering, praying, talking, arguing, about how we would handle this situation. I silently wondered how i would ever live with the fact i had taken this child’s life and twisted it into such a mess. I resolved that this would be my punishment and exactly what i deserved if anything was wrong with my baby. And somehow, somehow i would squash that guilt deep into my gut and deal with it. James and I drove to Macon and waited in the waiting room for 2 hours. We were then moved to the second, closer, your almost there, only two more hours to go waiting room. I debated on spilling my guts to the Dr.to my husband, to the sonogram lady, to the gentlemen sitting next to me…just to relieve SOME of my guilt. But i kept quiet and to myself. Nothing could change what had happened. The Doctor came in..and blew out with the films we had brought.. he came back in and after ALL OF THIS NIGHTMARE..quickly and matter of fact said “it’s a shadow on the film. That’s all. Your baby’s fine. Just a shadow folks. No need to worry” WHA? WHAT? A FUCKING SHADOW??
James and i stared at each other, wondering if we both heard the same thing. It was the strangest moment to have been sick to the CORE with worry and guilt and blame and everything else that goes with motherhood…and within 1 minute 30 seconds everything was just fine. No worries folks. The Dr. disappeared and that was the end of that.
I have no idea the moral of this story, or how it applies other than to express as a Mother, we worry and our minds run rampant with the who , when, WHY, where, how bad.. of it all. And perhaps i caused it all????? And either way, i can damn sure fix it all. I think. I love you Mrs. Grammatical Error Police. Your child will be just fine because he will be yours.
I love you right back, Mrs. Brave Heart! I love it when you tell the truth. The only thing wrong with that baby is that he’s too damn good looking.
I love the way the light is shining on his sweet little head. I think his light is going to shine on and on for a long time.
I agree!
Ashley, your Daddy has always told me that Joe didn’t talk until he was 5 because LG spoke for him…he didn’t have to talk. Two sisters may be talking for him? His motor skills look fine and so does he.
I think there’s a lot of that going on because he can talk when he HAS TO!
I felt relieved when my son was diagnosed with Aspergers. I finally knew what was going on and could start figuring out how to help him.
That’s whay I’m looking for–a direction!