What It Means to Be Not-Quite-Verbal

The Boy's self portraitThe Boy is verbal. He can speak in short and long sentences, has quite a vocabulary, and is an incredible speller. But not always.

When he was a toddler, he didn’t have as many words as his peers, and we ended up in speech therapy. We used flash cards to get him to learn nouns and actions. He went to speech twice a week for several years.

He now loves words, and particularly loves word play, and puns and jokes where double entendres are at the center. But, there are times when he cannot speak. There are times when it seems he refuses to answer. His teachers encounter this often, and it isn’t (as they too often assume) because he doesn’t know the answer. He simply can’t.

And he wants to.

A few Halloweens ago, he was trick-or-treating with friends and I was following with another mom. A couple of giggly girls recognized The Boy, and came up to say hi. After they went off in a different direction, I asked him about them. “Who were they?” No response. Knowing he probably knew but couldn’t tell me, I tried not to make it a big deal and we continued on our way. Shortly after, we arrived at a house with two cars parked in the driveway. “Mom!” he said. “Er, look,” he said, pointing to one of the cars. “You know, the girls…” he said. He was giving me a clue, and excited he had a chance to communicate with me. After a little back and forth, I realized the car was a Lexus… and the girl’s name was “Alexis”. Then he told me the other girl’s name through another clue (she had the same first name as his favorite teacher from elementary school).

If you first understand that there are times when he can’t speak, and then also understand that he wants to, and finally give him the opportunity to give you clues, communicating is possible. It requires understanding and patience, though. And discrete labels aren’t helping, either. So I’ll stick with “Not-Quite-Verbal,” and keep working towards understanding.

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Has this Happened to You?

You are at some school or other kid-related function, and a parent begins talking to you as if they know you. She or he prattles on about their child by first name, and your child by first name. But you’ve never met them before in your life.

IMG_4054-0I suspect this is common for those of us with kiddos on the spectrum, at least those of us whose kiddos are not-exactly-verbal. In my experience, The Boy becomes a kid at school that everyone knows, or at least knows of, but because we have limited social interaction with the same students outside of school, I know none of these kids. It is also due to the fact that The Boy is fairly nonverbal about anything that happens at school.  This is why I try to go on at least one field trip per year, so I can put names with faces.

The latest occurrence happened at an Autism Society Friend and Fun event, and I met a mom and her daughter, a girl who is a year behind The Boy in school. He’s gone to school with her for two years, so her mom assumed I knew her daughter, or at least knew her, but I had never heard her name mentioned before, and had never seen her before.

I’m clearly at a disadvantage when this happens, and never quite sure how to respond without seeming rude, and I really should come up with something to say. I would love to know more of these kids and their parents. It would be great for both of us to make more connections, but it’s almost as if he is a celebrity and lives a double life.

Apparently, what happens at school stays at school, and the first rule of school? Never talk about school. 😉

How I Know

The Boy is what I call not-quite-verbal. He can speak, had years of speech therapy which started with teaching him basic words like “running” and “ball” with flash cards. He enjoys words a great deal, and finds puns and double entendres highly entertaining. One of his obsessions is “ugly sounds” in the band class, and when I remind him that reading The Hunger Games is on our schedule for the evening, he says, “Reed!” back to me, with a perfect imitation of the sound of a reed instrument squeaking. He then explains the joke, that “reed” r-e-e-d is not the same as “read” r-e-a-d, and which one did I mean? Haha.

But ask him what he did in school today? Crickets. Not a peep. Ask him where his field trip is on Friday? Not a word. It’s not as if he doesn’t know. He just cannot form the words. And due to his verbosity at school about his favorite topics, those who know little about him or about autism assume a lot.

Sometimes, they can't tell us what hurts. We just have to notice.He also will never tell me he is experiencing pain, which worries this mama. In fourteen years, The Boy has never once complained of a headache, but he’s probably had one. And he definitely will not tell me if his dad’s absence and lack of communication is causing him pain, either. I have always told The Boy that he can call his dad anytime he likes. He has never taken me up on the offer. He has difficulty talking to him on the phone on the rare occasions that his dad calls him because he has difficulty creating conversation, and his dad doesn’t understand the types of questions to ask.

But I can still tell. When getting dressed, he will switch from the t-shirt I chose to the Steelers t-shirt for the day (his dad is a Steelers fan and got him the shirt one Christmas). He will ask me random questions about what his dad’s cats are doing. Little things that let me know that he’s thinking about and missing his dad.

It’s a different type of listening. More of a “noticing,” but it’s a huge skill set we autism parents develop. We use it to notice the ways our kiddos self-advocate and self-calm, so we can help them replicate the strategy if it works. We use it to notice a budding new interest that we can encourage.We use it, as in this case, to notice when they might be feeling a bit low or lonely and need some extra cuddles and attention. Basic parenting, sure, but supercharged.

Stop & Listen

A common theme here on Simple. I Just Do. is that I forget, sometimes.  Your kid gets to be 13 and you feel like you know everything until you don’t.  His behavior is wonky, he’s depressed and ready to blow for a week, and you scratch your head and say, “I hope he gets over this thing soon, because I have no idea what’s going on with him!”

And sometimes you lose it.  You lose your patience because you are just so tired of hearing the negative, and the same thing every day, the fixations on things that never happened, and the punishments he has dreamed up for himself for poor choices he didn’t make.  And you snap, because you just don’t have any more answers, you just can’t understand, and you just can’t listen to one more minute of the perseverations.

And you start talking to him like you would talk to a neurotypical kid who is lying, or has made a poor choice, or is misbehaving, all the while knowing that he is not that kid, and this is not any of those situations.  But you do it anyway because you’ve got nothing else.

“No, that’s not true.  No, that didn’t happen.  I need to understand the real reason why you are upset.”

And you may even raise your voice a little, because he just doesn’t understand you.  And you just don’t understand him. And there is complete communication breakdown. And he begins to get teary eyed.

And then he tells you something new.

He tells you he is upset because his plug and plays are not working right, and you remember that you were going to get the crud out of the battery compartment of that one plug and play, like, two weeks ago and you never did.

plug and playAnd so you hug him, and tell him to find his little screw driver so you can take the covers off of all of them.  When he brings you the screwdriver, you tell him to get the pack of batteries you bought him last weekend, and you sit down together.  And you start working on solving this problem.  This problem that he told you about two weeks ago.  This problem that you said you would help him with and you didn’t.

This problem that a neurotypical kid would have nagged you about, but that your actual autistic kid did not nag you about.

This problem that seemed small to you, but was probably huge to this boy who couldn’t communicate its importance to you.

You kick yourself because you knew and didn’t know at the same time.  You forgot that the importance of things is relative.  And he told you, but you weren’t listening.

 

Luckily, all he cares about is that what’s been bugging him is being fixed. He is no longer negative and depressed, but excited and chatty.  Communication breakthrough. Peace restored.  And he doesn’t hold it against you like a neurotypical kid might.  And that makes all the difference in the world.

 

6 Basics I Sometimes Forget from Autism 101

One of the hardest parts of being an autism parent, especially in the beginning is deciphering your kid and his behavior.  Why in the world is he doing that?  What is he so angry about?  Is this a tantrum or a meltdown? Why can’t I get him to (insert any activity here)?

As you grow as a unit, you begin to understand more about how your kid works. You get better at predicting behaviors, and identifying triggers (more on that in another post this week). Your skills and knowledge increase exponentially.

Autism101And yet, as I’ve written before, you will always have your moments of complete and utter dumbfoundedness (is that a word? If it wasn’t, it is now), and better yet, you forget sometimes about stuff I like to call “Autism 101”.

So what are the “Autism 101” basics I forget from time to time?

  1. One of the biggest culprits for negative behaviors is a virus.  I will get phone calls or emails from the school, out of the blue about work refusal from The Boy, or escaping from class, or any number of negative behaviors.  My first instinct is still defensive, i.e. “What did you (the teacher or aide) do to trigger his behavior?”.  And that is simply because he is a good kid, and doesn’t act out.  He hates displeasing me or The Man or his grandparents, and when this behavior happens, there’s a reason.  What I often forget is that a common reason has nothing to do with action and reaction, and everything to do with cold and flu.  Viruses do a number on his system, and much like a computer, he starts acting very strangely indeed.
  2. Another big culprit for negative behavior is (forgive me) an upcoming bowl movement.  You see, The Boy had surgery as an infant, in which they removed part of his intestine, and moved some things around in there.  As a result, well… let’s just say that if there was a super-duty (heh, heh… I said “doody”) wide-throated toilet, we’d have it.  And much like the wonder of childbirth, I really don’t understand the physics of how something so big can come out of something so small.  As a result, poops are not regular, nor are they fun.  And I have found that sometimes they are preceded by some really wonky behavior.
  3. He may say he’s not hungry, but give The Boy a snack because hungry turns into negative behavior. This is one instance where trying to respect your child’s independence, and listen to their voice and burgeoning self-advocacy does not work.  If you don’t give him anything, he will become even more absorbed in what he is doing until his body forces him to react to the hunger, and it’s rarely in a good way.
  4. The Boy is verbal, but still lacks language.  The Boy loves words, finds words funny and punny, and is able to express and receive language.  He is in a high-functioning autism pilot program, even though he would not have been classified as having Asperger’s Syndrome.  He had language delays as a toddler – I had to teach him language with flashcards, and he went to speech therapy twice a week for a long time.  He does really well now, but he still lacks language to express himself appropriately sometimes.  There are situations where he cannot find words to say what he wants to say, so he leads me to the right guess.  But sometimes I can’t guess, and I have to remember that even though he has high functioning language skills, they were hard-earned, and this is not natural for him.
  5. Pictures, pictures, pictures, pictures, pictures. Sometimes I will ask myself, “Why is he not understanding this?” and I have a “Doh!” moment and think, “Maybe because you just told him about it, and didn’t use any pictures, dummy!” There’s a reason well-respected autism professionals talk about picture schedules until they are blue in the face – it’s because they work.  Our kiddos are generally very visual learners, and if something just isn’t sinking in, a video or picture will usually do the trick.
  6. Intrinsic Motivation just isn’t it.  Rewards and motivators are king.  And I’ll be honest – I don’t forget this one (as sometimes The Boy’s teachers at school seem to), but I do forget to have a ready supply of rewards and motivators in my bag of tricks.  When I don’t have something at the ready, I sometimes resort to taking away privileges, which doesn’t work nearly as well. More on this in the upcoming behaviors and triggers post…

How is it possible to forget this basic stuff that one should know after 13 years of experience? Because there are peaks and valleys to child development, and even bigger peaks and valleys in the development of a young person on the spectrum (in my personal experience).  There’s a lot of backtracking, having to recoup skills that were considered mastered, and as they grow more independent, you forget they are still kids, still learning.

There is no mastering of parenting, I’m convinced. It’s Murphy’s Law – once you think you know everything, you will be quickly shown that you do not.

Sad to Lose My Bright Spot

My little kindergartener’s mom called today to say she won’t be coming back to me for tutoring.  She’s not verbal in the same way The Boy is not verbal, and her mom said she didn’t really know me, and you couldn’t be too careful, when she can’t tell her parents about anything that happens to her.

I get it.  Believe me, I do.

But I can’t deny that it hurts, and it makes me sad.

Once, when I was still doing my teacher thing, I was accused by a parent of putting my students in danger of heatstroke by having them march in a parade in 80 degree weather.  I’ve been called a lot of things over the span of my career, but that one really, really hurt.  That someone would think that I would ever harm one of my students was so wrong, such an unwarranted injustice to me…  Needless to say, it stayed with me.

As does this.  I looked forward to working with her, because I saw so much of my son in her, and she was a joy, a JOY, to work with.  I wish her well, and hope she gets every support she needs to become as independent as she can possibly be.  I hope she is able to advocate for herself someday.

Teaching can break your heart sometimes.

Broken heart symbol

Use Your Words

Tomorrow is The Boy’s birthday (Just FYI – there will be another birthday related post tomorrow.  Birthdays are a big deal).  Today’s post is about verbalizing.  The Boy is verbal.  In fact, if he is speaking about interior dome lights in cars, he is downright verbose.  But he is not always verbal about what he wants and needs, nor is he verbose when asked direct questions.  This is fairly common with autistic kids.  They can tell you every plot point of the latest Disney movie, but ask them to make up a story and you are met with complete silence.

The Boy has always been this way.  When he was younger and Webkinz were a thing, he would receive a new one for his birthday or Christmas, and could not come up with a name.  They were often named whatever the first suggestion I offered was.

Tails added to "the list"

Tails added to “the list”

He will tell you what he wants (in terms of toys, games, etc.) while in the store, when they are staring him in the face.  This is why we came up with the strategy of taking pictures of them with my phone and putting them on “his list”.  This helps us get out of the store without having a meltdown about not purchasing what he wants then and there.  And you may be thinking, “Great!  Then you know exactly what he wants when it comes to birthdays and Christmas, because you have pictures of them right there on your phone!”  But often, he never speaks about those things again, and I am left to wonder whether he really wants those things, or whether he was just attracted to them at the time.  Was it true love or was it just lust?

Therefore, I did a mental double-take last week when we were at the store last week, and he saw some fleecy sleep pants he liked.  He pronounced, “Mom, you could get these for my birthday!  I want these for my birthday!  Take a picture!”  He repeated some variation of these three phrases for a couple of minutes, and I think he was as excited as I was that he had verbalized his want for something specific for his birthday.

A couple of says later, I casually asked, “Do you still play with your Bionicles?”  He said, “Yes, I do.  You could get me a Bionicle for my birthday, too.”

It may seem like a small distinction, but it was huge to me.  He has never before asked for something specific for his birthday, and he continually amazes me by making these small (but huge) steps toward independence.