Every now and then a survey circulates on Facebook where parents are prompted to ask their child a series of questions. The questions vary slightly, but parents are supposed to record, faithfully, their child’s responses whatever they may be. It is sweet and entertaining – kids say the darndest things, after all. Parents post the responses with heart- or shocked-eyed emojis; it’s taking a small moment to be impressed with, and entertained by, your child.
I read all your surveys, at least half of the way through. I think your kids’ observations are adorable. I think your realization of what your kids think of you is just as meaningful as you do.
But I hate this survey.
If I sit Jack, my four-year-old, down to ask him the questions, and if I share those responses, it isn’t going to look like yours.
That difference is a legitimate observation. A few things are a bit different over here. Floating in the nucleus of each cell in Jack’s body is an extra 76kb of his X-chromosome.This genetic blip is so tiny it doesn’t even come close to the minimum size his genetic testing is accurate to.
And yet that rogue 76kb of his X-chromosome, which doesn’t even contain a complete gene, means Jack stopped meeting milestones shortly after his first birthday. His speech was most affected, and with private speech therapy two or three times a week plus weekly occupational therapy, he now performs around the 25th percentile – or the “lowest possible end of normal” as every single assessment has told us.
This means at four, he isn’t always consistent with pronoun use, he doesn’t describe images using -ing verbs, and while he can point out similarities and differences, he can’t describe why very well, if at all. The grammatical foundation of his sentences is… eh compared to kids his age. While he talks non-stop, and expresses himself well and in appropriate ways, the things he says just don’t resemble the things your preschooler says.
Considering that Jack was an 18-month-old who only had a one-word vocabulary, the growth he has made, if charted, may outpace a typically developing child. But he is still behind. My son can now engage in a lengthy back and forth conversation, as long as the topic is predictable. If I ask him a series of 22 unrelated questions, he isn’t going to understand what is going on.
This is why you don’t see a survey from me. However, if we stay concealed, it continues to create a world whose definition of normal is one that excludes Jack. So this is what it looks like when a preschooler has a speech and language processing disorder. Here are Jack’s responses.
- What is something mom always says to you? Hmmmm. T-rex.
- What makes mom happy? Birthday.
- What makes you happy? A skateboard.
- What makes mom sad? I don’t know.
- What makes you sad? It’s gone (pointing to something on the wall). I don’t know.
- How old is your mom? 4.
- How old are you? 3 – 4!
- What does your mom do for a job? Computer.
- What do you want to be when you grow up? Really tall. Make me strong (flexes muscles). I will get all the way up to the top and fall down.
- What do you and your mom do together? We go to playground.
- Where do you and mom like to go? A black car.
- Who is in your family? Maddie, Dad – I want to stop.
[we stopped.]
In all fairness, I do drive a black car, and I work remotely on a computer. So Jack has an accurate understanding of the world around him – he just can’t express it. When measuring people’s language abilities, skills are always divided into receptive (can you understand it?) and expressive (can you say it?). Jack, like many children with a speech delay, has higher receptive skills than expressive. And he knows it.
When something gets difficult for Jack to do, he will try to opt out by either asking (as he did here) or by becoming extra goofy and/or cute as a distraction. This is the same thing his dad used to do as a child, although his speech and language processing disorder went undiagnosed because it was the 1980s. He still was in speech therapy for articulation, so we can assume he got the support he needed in a sideways sort of way.
Measuring Jack’s speech delay can be tricky because when prompted with questions or tasks, he will rely on single words or “I don’t know.” This is a kid who has been assessed regularly since he was 18 months old. All professionals have about a 10-minute period before he is giving up on you and your dumbass test. But giving up means we don’t have this data point.
Do we need the data point?
A speech delay isn’t just a delay. It is going to point to something else: an intellectual disability or a learning disability. Jack has a speech and language processing disorder, no question. He will require support with this his entire life as he learns to communicate out to the rest of the world. It’s the potential intellectual disability that is more daunting. Every day I quietly plan for what we may need in our future. Should I buy a two-unit duplex or flat in case Jack can live mostly independently? Then we could live side by side? And if he can live independently, I’ll always have the rental income. Or maybe a house with an in-law suite or the possibility for one?
And for every moment of paralyzing fear and worry – there is a moment of psssh he’s fine. It’ll be hard, but he’s fine.
Because one of the other measures of intellectual ability in young children is play skills. Jack has engaged in imaginative play since forever. He’ll use a paper towel tube as a horse to ride on it. A rectangular block becomes a truck or train. And he makes up stories between any two objects. His cars go on adventures. His trains need help getting up hills. Bad guys are defeated seven times a day. A favorite game is to take a toy, place it on the ground, turn around and pretend the be asleep (head resting on hands with fake snoring and all), then he turns back around and !!! acts surprised to see the toy and says: “I got this today!”
While typing this, Jack came up to me with a wood giraffe and said: “That’s like dogs. These spots are like dogs, but this is the longest neck I’ve ever seen on a zebra.”
“That’s a giraffe.”
“Right, it’s a giraffe with the longest neck. Zoom zoom. [walks away] I’m going to shoot this thing! BLAST OFF!”
It’s much wordier than when he was hit with rapid fire questions. I kept listening to him as he played in the other room: “You’ll watch out now because [rolls a car] aaahhh! Aaaahhh! What? Super, super high. This time I got this one and you don’t. I have four shooters. It’s a raptor, it’s Blue, and it’s the best dinosaur. Wait a second, this is the four, five, uh-oh! An egg! Is it an indoraptor? Let’s see. I’ll sit here, but we need to watch out. MOM!?! I got something.”
“What do you have?”
“I got… it’s a little silly. I got these both gold. No wait. This one is silver, and this one is gold [he has a silver-ish and gold-ish toned Lego in each hand. Then he leaves the room again.] This is silver, and I got silver. You can’t steal the silver. What do I do? Oh yeah, I’m sorry I’m sorry. What? Oh it’s just you [laughs] you aren’t taking the silver. Boing boing [I think a toy animal is now jumping up and down maybe?] oh! Oh! Oh! [two toys are fighting] you got me! MOM! I need to go in the basement.”
Once I turned on the lights in the basement for him, he went down the stairs, yelled back up the stairs that his cars were in a different box than usual (I was in a hurry picking them up), and then proceeded to narrate something about a race to see which car could make it around a track without falling into the water. Ten minutes later he brought me a circular piece of play doh and told me it was a pizza before cutting a tiny triangle off for me. “Here’s your piece.”
Pretty typical preschool boy stuff.
When you sit down to ask your kid some cute questions and record their responses, that’s probably just it. It seems fun, it is cute, oh cool. But when I sit down to ask my kid those questions, I spend the next half hour weighing the “results” as if it is another data point with everything he says and does after it. We also did this survey once when he was three-and-a-half, and I sat on it until we did it again today. There’s nothing to be ashamed of, but it still feels that way. While his speech may seem wildly typical to some, or horribly atypical to others, it is what he produces, and it is worth sharing.
Melissa Sharpe 
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