Saying It With and Without Words
March 28, 2008 by Kristina Chew, PhD
Filed under Health
When I say that my son Charlie is “minimally verbal” or “can’t talk too well,” I don’t mean that he just says a few words and then is silent the rest of the day. You can hear Charlie’s voice all the time in our house. Plenty of words are said though what Charlie means by “Jesso doggy Barney tape” is probably not clear to many (if not most) people. Charlie hums and warbles and sings ever-longer snatches and phrases of songs. In the past few months, he often sings the melody of any song he’s heard and, more and more, the lyrics too. Today it was something by Van Halen after hearing it on the radio; at school, after another student sang “My Country ‘Tis of Thee” after the Pledge of Allegiance over the loudspeaker, Charlie literally burst into song, as his teacher noted to me today.
(I mentioned that, a few weeks ago, Charlie sang (quite out of the blue) “Who Let the Dogs Out?” with perfect rhythm—–he last heard that song in a gymnastics class he used to take. The staff played the song while the kids ran in a circle fast, with me urging Charlie on.)
There are a lot of random other chortles, growls, grunts (some of these are imitations of me sneezing and coughing, both of which used to bother Charlie no end), and other sounds.
And, there is not-verbal communication in the form of bodily actions. In the last half-hour of school today, Charlie was on his way to heat up a plate of frozen tater tots (something that he, needless to say, really likes to do). Completely out of the blue, he fell to the floor and cried out—–I read an email from his teacher about this and, after reflecting on the past few days, wondered if his stomach was bothering him? So that he did not feel like eating the tater tots but when he saw them he knew he should want them and the cognitive dissonance really bothered him?
My parents met Charlie when he got off the bus after school and suggested a movie. Charlie said “no” over and over and then, grinning, got my parents’ suitcases and put them by the door. And had a stomachache—I’ve observed that when Charlie feels this happening, he often asks to eat more and more (thinking that will make his stomach feel better?). Then he was really grinning. Charlie knows that my parents leave to go back to California after this weekend and we also suspect that he was showing “anticipatory anxiety”: He often gets upset 3-4 days before my parents leave; he often goes through feeling bad in advance of things happening.
When I got home from work tonight, I found Charlie and my mom and dad eating take-out Chinese noodles in the kitchen, and everyone very content. There are more ways to say what you’re thinking than with words. Or that’s what I’ve learned from Charlie, over time.
Yes there are other modes of communication and understanding. None as effective or important as oral and written language. See for example this blog site, or the development of literature, both classic and modern, science, medicine, law, religion, philosophy ……… Obviously I don’t have room to complete a list that has no end.
Conor too can communicate non orally but we still work hard to develop his oral communication and understanding. We try to do so with a positive outlook but without diminishing the importance of oral and written communication.
It’s interesting that you note that Charlie asks to eat more and more when he may not be feeling well. Are these just random stomach aches or do you think something more is going on? Do they happen often?
I ask because my three year old daughter has some verbal language (talks A LOT but doesn’t always say much that makes any sense to me – I’m sure she feels she’s making plenty sense!) and tells me at least three times a day that her belly hurts. It can be before, during or after she eats. I can’t tell if she’s hungry, has gas or the food is hurting her in some way, or it’s something more. And she asks to eat ALL.DAY.LONG. And she cries often while she’s eating (though I think it’s because she bites her tongue a lot).
I can’t get the medical/behavioral world to give me any answers so I was wondering if you’d gotten any further to the bottom of it.
We used to watch a Gesso Doggy Teletubbies tape repeatedly. Now you will have me hearing the little British children yelling “GESSO! GESSSOOOOO!” in my head all day.
Matty is the exact same way. He has limited vocabulary; but what few words he does have, he says constantly. He is never quiet!! I love it
@Bink, And that beach ball rolling in the sand and on the wall—-Charlie used to try and re-enact the whole scene with a ball and a toy dog.
@Laura, Wow—-Charlie does just what you describe on the days when his stomach hurts. I don’t think it’s entirely random as I can usually trace it back to what he’s been eating—-he really likes some gluten-free bread that my mother brought him from a bakery in California. I know that gf breads can contain special ingredients (like xanthan gum) to hold the flour together and I think these lead to….constipation and that definitely leads to an agitated child. I have thought that Charlie asks to eat because his stomach hurts and he is trying to make it feel better.
The stomach aches don’t happen too often. Mostly when Charlie’s eaten too much of some gluten-free breads (being gluten-free has not been the end of stomach issues, you might say, but has led to a few new ones).
Talking about things like needing to use the bathroom and feeling hungry have seemed hard for Charlie to get. Regarding the bathroom, I think this word has a very concrete meaning to him which is, say “bathroom” and it’s thought that he needs to use it NOW. And often he doesn’t need it NOW but at some point soon but he has only been able to ask for the bathroom when he absolutely has to use it. Repeated asking him about this has led to behaviors—–and I can see why, if someone else kept bothering me about such personal needs, I would feel frustrated (that’s me).
Sorry for going on about this—-have thought about it too much! Do you notice certain foods lead to more of the “belly aches” that your daughter notes?
I appreciate you going on about this! It’s constantly on my mind and your thoughts are stirring up some new ones of my own.
We think milk in a concentrated form (such as a glass of milk, yogurt, ice cream, etc) makes her feel badly pretty quickly as the belly complaint follows eating these, if not during eating these. I try to limit these foods, but we have a whole gang of feeding issues and doctors keep pressing me about calories and vitamin deficiencies, etc. so I haven’t banned them completely. Plus, it’s one of the only things she’ll readily eat so with her not gaining weight or growing taller, I’m constantly fighting internally about giving them to her because there are potential benefits and risks. There’s a whole medical v. behavior thing going on here with she and I stuck in the middle of professionals that can’t work together or figure it out.
As to other times or foods – I can’t find a pattern really. She refuses any and all dinners and most lunches no matter what is served, so it is likely that she’s hungry quite often but with her speaking up about belly pains throughout the day, it’s possible that it’s a combination of things: hunger, food intolerances, bathroom issues and maybe even stress. I know when I’m stressed about something, my stomach can hurt or I lose my appetite, etc. It’s difficult to sort through these issues when the complaint issued uses the same general words of “my belly hurts”. We’re grateful for the progress she’s made to get to this point of being able to tell us anything at all, but she isn’t able to expand on this so we’re left guessing, eliminating foods, offering foods often through the day and working on the concepts of bathroom issues. Working on stress-related issues, as you know, can be even more difficult than all of the above, as is getting the medical v. behavior professionals to get on board.
We also think she’s experiencing something called Apathetic Withdrawal (it’s a form of a defensive mechanism under the “action” category listed in the DSM-IV) where her body shuts down on her in various ways when she’s stressed in any small or big way. She doesn’t do the big tantrum thing. She cries a lot – but she doesn’t have big, screaming meltdowns in public. What she does do, is withdraw. Her kidneys don’t work right, she becomes dehydrated, lethargic, feverish and non-responsive. Her digestive system doesn’t work properly and her food goes through her too quickly (within an hour). She doesn’t eat, either doesn’t sleep or sleeps too much, doesn’t talk at all or gets these “belly aches”. She’ll complain that her belly hurts a lot when we’re out in public or at the doctors’ office too. It’s possible that this (the apathetic withdrawal) is why she’s reacted so badly to vaccinations in the past. So, we don’t get tantrums as much, but we do get shut downs and those are scary!
M insisits on eating during her CVS bouts. Apparently that is common. It makes the belly feel full and supposedly makes the pain more tolerable or something like that. M can’t put it into words yet so we just go along with it the best we can.
I am glad that Charlie is singing so much. I bet he has a great voice. M sings a lot in the car and I love hearing it. I honestly never thought she would sing so when she really got into that in the last year or so I was thrilled. Music to my ears!
@Marla,
Thanks for mentioning that—-I was thinking that Charlie is trying to comfort his belly by eating. And then realizing it does not feel good. I really am thinking about a hot water bottle for him.
@Laura,
Charlie definitely does not tolerate milk. He eats regular bread from time to time—just a bit—-as you can see, the gluten free bread also has an effect on him; sometimes I wonder what would be better.
And one’s stomach can hurt when one is hungry—”hunger pangs,” yes? Are there other liquid type thins that she might try? One of our friends’ son loves smoothies and juices from the juice bar (whereas Charlie will not touch them—he likes to bite into something) and has a lot of those.
And now you’ve got me thinking about “apathetic withdrawal”—-Charlie sometimes does a similar “shut down” thing instead of a louder sort of behavior. He also likes to lie on his stomach and curl up into a sort of fetal position with his hands crossed over his body and on his belly.
So much stress for your daughter—in her own body and in the world around. Has she tried other kinds of “milk” or do the doctors not recommend those?
We do have her drinking rice milk right now and we have tried the GFCF diet for seven months with no change medically (same stools, same crying, etc). She has never been a fan of bread in any form, so large amounts of gluten are not really a concern. I’d never really thought about it, but it makes sense that GF breads might cause constipation and other similar problems since the GF diet is supposed to help with loose stool type problems (among other things). And the doctors aren’t thrilled that she isn’t actually drinking tons of milk and eating tons of dairy and would rather she drink soy but she refuses that so it’s a no-go. We have tried smoothie type “foods” in the past and sometimes it works, sometimes it doesn’t. She had a feeding therapy evaluation two days ago and the OT who is employed by a very nationally reputable university hospital, and has 20 years of experience working with feeding issues in kids with sensory challenges or autism, said she hasn’t been this stumped working with a kid in a long time. My daughter has given more than me and a few professionals a run for our money. She just likes to keep us on our toes, constantly challenging us to be more creative in our methods.
The apathetic withdrawal idea has been fascinating and yet oddly obvious. When we’re sick with generic, idiopathic symptoms, as adults, the first thing doctors will say is that it’s due to stress. It doesn’t make sense to say that newborns, babies, toddlers and then children’s bodies can’t and don’t react just as strongly, if not even more extreme than adults, especially given a diagnosis of something like autism where the world’s sensory and social environments are constant challenges. Whew. That was far too long a sentence!
Someone once explained to me a general theory about the “feelers” we have lining the inside of our stomachs and thus the kids that have sensory challenges, have difficulty feeling full or difficulty feeling hunger. I also imagine that it makes our kids much more prone to feeling every little thing. Every little cramp, nausea wave, hunger pain or tiny bit of fullness. Whenever I think about it in this much detail, I am so proud of my little girl, and all our kids, that work so hard to do something so many of us take for granted such as eating.
@Laura,
A long time ago I knew a little boy. He was about 2 or 3 years old and he had these unusual feeding issues. He just wouldn’t eat—I remember his mother saying that he’s old onto a hot dog and walk around the house and say “I’m hungry” and not eat it. Looking back I think he may well have been on the spectrum—-his language skills were above-age.
This was at a clinic for children with feeding and eating problems and it included adolescents with eating disorders. What you’re describing about stress and sensory issues makes a lot of sense especially thinking about the sensory aspects of eating and feeling full (Charlie does not always seem so aware of this—–sometimes it seems he just eats and eats). Lately he’s been scrunching up his shoulders and squinting his eyes and stomping a bit and pausing, as if refocusing himself before moving onto the next thing.
I’m sure you’ve tried this but after reading your comment I started to think about tofu which (prior to being dressed up with sauce etc.) is extremely bland…….