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.

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. 😉

Do as I Say, Not as I Do

We’ve had much discussion over the past few weeks, the school and I, about executive functioning skills and the need for a homework folder so that I know that what comes home needs to be completed/signed/looked at and returned, and the teachers and TA know the same about things that come from home. His teacher offered up a cat folder two weeks ago… via email, and I haven’t seen a single cat folder since.

Last night, while retrieving The Boy’s band music from his backpack, I found a random envelope that said “return by 3/18,” which contained a “Student Dream Sheet” and a “Parent Transition Survey,” which I have filled out multiple times before. The “Student Dream Sheet” is new, however. I took one look at it and immediately thought, “Yeah, right.”

IMG_4678It is a front and back sheet with 15 open-ended questions on it. I get that they can’t supply multiple choice answers because they are trying to understand just what it is The Boy wants to do in his future, but really? Is this the best way? They really think that this is even a possibility for someone who is fairly nonverbal? And it’s “due” in three days?

I don’t even have words at the moment, and I’m not really sure what I’m going to do about it. Yes, he needs to be involved, and ideally answers to “What kind of job do you want when you graduate?” and “Where do you want to live after graduation?” are important for us to have when considering his high school plan. But to expect that I can just sit down with him in an evening and get these answers (no doubt, preferably in full sentences – ha!) belies how little thought, effort, and expertise is behind this whole thing anyway. Shouldn’t an “assessment” for an IEP meeting follow the dictates of the IEP? Shouldn’t educators modify an information-gathering tool to the child with specific special needs?

“Do you have any significant medical problems that need to be considered when determining post school goals?”

Really?

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.

 

A Peek Into Their World

Lawson's_JournalYesterday, we had an informal parent meeting with the teacher of The Boy’s program and the county autism specialist to check in, and give some feedback about the program so they can satisfy their grant requirements.  Everyone was very pleased, and remarked at what a haven they have created for our boys, and how thankful we were for the program’s existence.  The teacher then told us we could look at our kids’ binders where they keep their journal writing related to their social skills class.  The Boy hasn’t done much of this because he is the only 6th grader in the program, and therefore doesn’t have much of a social skills class, but the other parents were like little children on Christmas, “Can we really look in their binders??”  I watched as they read the entries, pointing out certain phrases to their spouses, all the while reading like they wanted to get to the end of the book before lights out.  For parents who don’t often get verbal communication from our kiddos, this opportunity was an incredibly valuable peek into their world.

I’m so thankful for special education teachers who know what their doing, programs that provide what our kiddos need, and opportunities to connect with our boys, even indirectly.

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