Lost in Translation.

“Where are your shoes?” I ask.

Toots is sitting at his little child’s table in the bedroom, playing a racing game on the computer.  “Mommy, what is that sound?”  he asks back.  I hear the rumbling of an engine.  He knows full well what the sound is.   He knows, I know, he knows.

His speech is divided between asking questions to which he knows the answers and scripting, with a sprinkle here and there of regular language.  This is his speech, communication, expression.  I’d say I hear more questions to which he knows the answer, or fill in the blank type questions, than any other language.

He also uses what is called “appropriate statements in play”.  These are ‘scripts’ he has learned in ABA, like “I’m racing really fast!” or “Look at how fast I’m going!” that would be considered “appropriate” for the activity in which he is engaged. Still, he distorts those back to questions like, “Are you going fast?”

The third type of language is regular communication.  This is still rare enough (a handful of times a day) that it stands out.  “Mommy, I’m thirsty.”  “I don’t wanna watch that one!”  “Where are we going today?” -all daily examples of language that still gives me joy when I hear them.

“You know what that sound is.” I respond about the engine noise.  “Now, where are your shoes?”  We are running late and I’m getting tense.

“SORRY Mommy!  Sorry!”  he responds, feeling the urgency but unable to give me more information.

“There’s nothing to be sorry for, Toots.  Where are your shoes?”

“1+2=3!”  The equations cussing begin.  He still cannot answer this question with a simple “I don’t know.” I have to cover my own stress to calm him down.  Once he is calm, I ask again.  This is his response:

“Mommy, I don’t know.”

Subconsciously, I knew this is all he would give me.  So much should I have understood it coming, that it’s almost comical.  Why do I bother?  Am I hoping that suddenly he will say, “Oh, I left them out in the family room by the couch.  Let me go get them” ?  I know that is not happening.  I am no closer to finding the shoes but now, I’ve wasted time riling him up and calming him down.

Another daily conversation involves the question, “Do you need to use the toilet?”  He ignores me 95 percent of the time.  I usually have to ask the question 3 or 4 times, feeling like a nag, but nagging beats cleaning the mess that will follow if I leave him be.  When he does respond, he will sometimes absently say, “yes” hoping the conversation will end and he can go back to what he is doing.  When I then prompt him to go use the toilet, he panics and backtracks, telling me, “You don’t need to use the toilet?!”

If I take him nonetheless, he gets mad, and again, I get cussed at with equations.  Alternatively, at times, he will tell me there is “no poopy in your butt”.  Thanks, I’m pretty sure there is no poopy in my butt (well-relatively sure).   Sometimes, I get, “you only need to go wee-wee (pee).  No poopy!” and then the opposite occurs.

We get “lost in translation” around our house.  I try to show patience.  I know he must climb mountains to talk every day.  Sometimes, it takes time for the words to process. Other times, he understands immediately.  Sometimes, I don’t know if it is attention and focus, or something within the perimeter of autism that leave the gap between us.  Often, I can see by his facial expressions, that his feelings, intents, desires or needs are right there, standing in line to get out of his brain, but the words are just not coming.

If I ask what happened at school, I get no response.  If I ask what he ate for snack, he will tell me.  Still, if his dad asks him, he defaults to “I played on the playground,” or he shuts down with “No!” to all questions.

My child is “verbal”, yes.  When my son speaks, he sounds like most other children. There is no enunciation difficulty.  It’s just that it’s more likely than not that the words don’t match the conversation.

His inability to clearly communicate his needs or responses often leaves him silent in a sea of NT children.  He wants to say “strawberry” but the word does not make it from brain to voice without some delay even though the correct word is pushing to get out.  And this frustrates him.

He could not tell me if someone hurt him or hurt his feelings, if he was bullied or physically or verbally abused, over-medicated or neglected.  He is vulnerable in ways other children are not.

There are things we don’t want to believe, look at, or face, as parents of special needs children.  Yet we have no choice but to look the very ugly stuff in the face.  At times, we have to fight to maintain our presence in the classroom so we do not become a story in the news like this or that.  A story so common place that it hurts every parent when we read about another child who has been hurt.

In the end, classroom cameras may be the only neutral answer.

For now, today, my son is fortunate.  Not only do we have a new and trustworthy staff at a school where everyone knows who he is, but we have independent ABA one-on-one aides for my son at school every hour of every day.  They are my son’s voice, eyes and ears, his translator, his facilitator.

One day, he will be able to provide his own voice.  And I, like every mom I know, am determined to give him every tool to reach that day.

It will happen, no matter how much time it takes, because it has to.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to Lost in Translation.

  1. Lisa says:

    T is one lucky boy. Your love and dedication show through many of your posts, like this one. We have very similar speech/language issues at our house. I, too, hope that one day he has all the tools to adequately communicate..until then, we will work tirelessly to help him.

  2. Our kids work so hard don’t they? Much harder than we do in many ways. I know you will – but just keep on trying. Don’t stop trying to have those conversations. One day he just may say “my shoes are under the bed.”

    • solodialogue says:

      Thanks Deenie! I will keep on – because the glimpses of what is just beneath the surface are too good to not keep at it! Jay will be there too! I’m amazed at how far he’s come since the trip with CC and coming back from Jamaica! Our behaviorist told me that whenever kids take these big trips they come back with huge strides in language and behavior! So what are we waiting for? We need more sun and sand, don’t ya think? 😉

  3. Lizbeth says:

    Oh God Karen, I’m just now catching up on things and it’s amazing how things turn out. I was reading through your last few posts and was seething and then continued…..I do hope this new school works out. And may karma kick the other one in the rump.

    This is part of the reason I’ve been away from my blog lately. Alex has been bullied at school and I’ve had to step away to process things and in the midst of that, a lot of other stuff has happened in the background that has upset him terribly. You are right to be on guard and never stop trying. Never.

    • solodialogue says:

      Thanks my friend! You’ve had your own stuff going on and I’m sending you my love through it all. This school is going to work. He has the most awesome first grade teacher! I love that woman – she’s brilliant. Kicking the rump of the other would be … a beginning. 😉

      We must always be on guard and use that status to push ahead… xoxo

  4. savvyadvocatemom says:

    Yes, I know exactly where you are at with the translation. I found out that when I was gone, Sensi was talking a whole lot more because she didn’t have me to translate and take the easy way out. Toots will get there. You are doing everything you can. I am so happy he is at a school that not only welcomed him, but also welcomed his tutors too. By the way, Random still doesn’t know where his shoes are and he’s 10.

    • solodialogue says:

      Hmmm. Interesting about SensiGirl! Ha -for Random Guy! I’m sure Toots is going to be the same… And yes! I’m happy about the school too – the tutors are not just welcomed for Toots but there are other children who work with the same ABA company that attend the same school. One day there were four tutors Toots knew at the school on the playground together! He loved it!

  5. This really resonated with me – it’s what I’ve been feeling lately. Our kids try hard everyday and we also keep pursuing communication with hopes that they will be less vulnerable. Your love and dedication to Tootles is so clear. When those surprise answer comes to our questions – the feeling is amazing. xoxo

  6. yes, verbal for our kids isn’t always what one would think. I am curious about the ABA independent tutor. I have not heard of that for anyone else. Is that your school district, state, or do you private pay? My son has a 1:1 aide in a mainstream class but the school provides her and she is not a therapist/tutor by any means.

  7. Mary says:

    Freckles can talk really well now, but she will not speak up loudly enough to be heard. Especially in the car. Until she gets frustrated and screams…

    If anyone really has a problem with finding shoes and other necessary things, the trick is to have everyone take their shoes off when they come in the house. We have a basket in the kitchen near the outside door for shoes. Backpacks stay there as well. Jackets on hooks in the hallway. My keys are either in the door or hanging on the hook next to the door. It seems like we are always running late so everything has to be where we can grab it and go.

    Organization is not only crucial to helping our kids (mine, anyway) function, it works well with the way our kids’ brains work. I know that might not sound right. Let’s say that having a specific place for everything plays to our kids’ strengths. They want things to be a certain way and they like routine so having a routine that says, “When you come inside, you put your shoes in the basket” makes life easier all around. I think one reason Freckles functions as well as she does at school is that her teachers are so well-organized. And the child LOVES calendars. We have a dry erase one on the fridge that she fixes every month and adds holidays and activities to so she knows what’s happening when.

    I’m not saying anyone here is disorganized, just sharing what works for us. 🙂 And yes, there are days when we aren’t so organized, but for the most part our system works for us.

    • solodialogue says:

      Toots also has a volume control issue. ABA tried a volume meter (one they hand drew with a little red arrow) to teach Toots what acceptable volumes are – he knows them but using them is a whole other issue!

      We do have a place for shoes (cubby). Again, implementing that place is easy when I’m in control right after we get home. Then, when he goes out to play with dad, they both come in messy and dump things everywhere when I am somewhere else – leaving me playing hide and seek… (sigh)

  8. thorgerdur says:

    Those lost in translation signs are hilarious 🙂
    my son is at a similar place in language development and I think the same way…it will happen no matter how long it takes and because it has to…and I can see those words..just there

  9. You know that LM and I are right there with you on this topic… oh, the questions she already knows the answer to!!! Will they EVER end?

    My favorite is when the answer accidentally gets scripted into the question, like (me) “I’m giving you the cherry juice.” (LM) “what KIND of cherry juice?” (me) “ummmm… the cherry kind?”

    But on the bright side, I still remember vividly when I longed for ANY communication at all. Look how far we all have come 🙂

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