You’ve probably heard me refer to Simon as ‘nonverbal’ several times, yet I’ve also mentioned the odd word or even phrase he’s uttered, American Sign Language signs that he uses, and the noises he makes. People have wondered how I can consider him “nonverbal” (NV) since he does all this nifty stuff. Well….

The technical definition of nonverbal is “not involving or using words or speech”. In Simon’s case, as with many autistic people, that means he doesn’t use words consistently. He is ‘functionally nonverbal’ or ‘minimally verbal’. This does not, however, mean that he cannot communicate.

At the time of this writing, Simon is almost 2-1/2 and has zero words that he uses consistently. Zero. None. Zip. Zilch. Nada. Bupkis.

That said (or not), over the last 6 months, he has spontaneously said the following things:

  • I poop
  • I done
  • I did it
  • Up
  • On butt (Point of clarification because this may sound odd: When he stands up and bounces on the couch, we tell him to sit on his butt, at which point he jumps up and then lands on his butt. He was bouncing on the couch the other day, looked at me, said ‘on butt’ and flopped down.)
  • What’s that?
  • Welcome
  • Daddy

These are what I call “excited utterances” and, so far, most of them have been said one time only. He has said “I did it” and “I done” more than once, but it sounds very garbled, he’s not consistent with it, and we’re still not entirely sure that is what he’s saying.

He will also make the “efff” sound when he’s trying to grab a phone. I keep telling him that if he actually says the whole word, he can have my phone.

He will mimic some sounds if you ask him to, like his happy scream or ‘yah yah yah’.

If I ask him who I am, he’ll pat me on the arm or the chest and say ‘amamama’. That’s the closest he gets to having a name for me. He doesn’t use it spontaneously to get my attention.

He does click his tongue when he is happy or asking about something.

He also does use some American Sign Language (ASL) signs. Some of them you have to prompt him to use, but most he’ll use on his own. Right now he can do:

  • Water
  • Milk
  • More/want (interchangeable for him)
  • All done
  • Fish
  • Cookie
  • My turn
  • Please (with prompting)
  • Thank you (sometimes needs prompting)
  • Cracker (inconsistent)
  • Book/help/open (he doesn’t have the motor skills to make these individual signs yet, so he’s morphed them into a generic movement and it’s up to us to figure out what he means).

Simon does get very frustrated if we don’t understand what he’s asking for and this can lead to some pretty bad meltdowns and head banging. Another issue is that because we get excited when he asks for something correctly or makes good eye contact (a challenge for him), he has come to think that he is entitled to whatever he is asking for. Just because he asks for a cookie means he gets a cookie, damn it. He also seems to think that just because he signs ‘my turn’, it means he gets to just take the object in questions (usually a toy). Saying ‘no’ to him often leads to bad tantrums. He is just 2, after all, and two-year-olds are all pretty much assholes like that.

It really, really hard having a child who is unable to talk. If he gets hurt or feels sick, we don’t know what the problem is. If he is scared, we don’t know what the problem is. Today, while I was at the store, Simon got very upset with Adam and Adam didn’t know why. Turns out, Adam thought I had given Simon his daily yogurt before I left, I hadn’t, and Simon wanted it. But he doesn’t know how to say ‘yogurt’, so….

In addition to the signs he uses, we are (slowly) working on implementing a PECS (Picture exchange Communication System). This involves having picture of preferred items or activities and when he wants one (like a yogurt), he is supposed to bring us the picture. At this point, however, he thinks the pictures are toys and just runs around with them. It’s a work in progress.

Side note: Once we get some insurance things figured out, we’re going to have Simon evaluated for a tongue-tie. His speech therapist and pediatrician agree with us that it certainly looks like he has one, despite being told several times when he was a baby that he was fine. While a tongue-tie isn’t what is keeping him from talking, it may certainly be making it more difficult for him to make certain words or sounds. It’s also possible that he may have apraxia of speech.

While we need to be prepared that Simon may never speak properly or consistently, we think he is so, so, so close to talking. He wants to so badly and, I truly believe, the words are right there, waiting.

I often use the analogy, and his speech therapist agrees with me, that Simon is like a bottle of ketchup. The words are right there, and we just have to (figuratively, people, not literally) turn him upside down and whack him a few times until they come out.



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