"Look At Me"

"Look At Me"
monotype and screenprint

Wednesday, July 10, 2013

The Words That Matter

I was talking to a fellow mommy blogger yesterday.  She has a 2 year old son named Mason who reminds me a lot of Derek at that age.  He only says about 6 words, and the 6 words he says aren't pronounced correctly.  You can find her at My Yellow Brick Road.  I remember those early years.  They were hard.  No, I'm lying.  They were more than hard.  They were exhausting and terrifying and frustrating.  Derek couldn't communicate his needs and had no desire to interact with anyone.  Tyler was jealous and angry.  I lived in a perpetual state of fear that things would never get any easier.

Thinking about those early years and everything my family went through no longer causes me pain.  The multiple evaluations.  The sedated ABR.  The MRI and EEG that came back inconclusive (I could kick myself for not getting a second opinion, but there is nothing I can do about that now...)  Starting ABA, which helped my son tremendously.  Not only did he love his therapists, but he learned that words had meaning, started PECS, learned some sign language, and finally found his voice. Maybe I had to go through all of that to truly appreciate what I have now.

There are still things that Derek cannot say.  Technically, he is still considered non-verbal.  If he wandered away from home and the police asked him his name, he might answer his first name, but he cannot give you his last name.  Sometimes he says his name is "Mommy."  He can usually tell you he is 5 years old.  But if you ask where he lives?  Sometimes he says "Sackle."  (Axtell.)  Sometimes he says he lives in "Five." (He knows he's supposed to answer something, so he gives a response.  He doesn't pay attention to the actual question.)  He can't give you a specific address or phone number.

Some days, Derek doesn't say much of anything.  Other days, he babbles nonsense all day long.  Sometimes, he sings the same song for hours on end.

Derek can count to 5, but after that he's inconsistent.  I've heard him count to ten before, but if you ask him to do it on demand, sometimes he counts backwards and sometimes he skips numbers.

Much of his speech is echolalia or scripting.

He can recite songs from memory and say entire scenes from movies verbatim.  But when he's sick, he can't tell me what's wrong.

Time doesn't make much sense to him.  He likes watching Christmas movies in the summer and doesn't understand the concept of "weekdays" vs. "weekends."  All he knows is that certain days he has school and certain days he doesn't.

But somehow, none of that matters.

I woke up this morning to Derek saying,"So good to see you, Mommy.  Wuv you."

The words Derek can say are far more important than the ones he can't.  And the things he does, like hugging me and kissing me without being told to?  Those are the things that matter.  Non-verbal?  Whatever.  Derek speaks with his heart.
I told Derek to say cheese and he kissed my cheek instead.


  1. That Derek sure does sound just like Jeremiah. The responses that are totally off and not the correct answer even if he knows the answer it could be whatever. He loves to have fun and play on his own and make believe a lot. Recently he has started doing his own things that are cute and adorable, all on his own without prompting, but hasn't shown the diesire to be accepted like Derek has, like when he says Derek cute in the mirror, nor does he like the close affection that you've described like Derek. I think its just gonna get easier from here for you and even for me as they get older I see Soo much more function and such different children compared to the non- verbal resistive kids we look back at when they were 2.

  2. Absolutely Beautiful! My youngest was recently diagnosed with Autism at age 5. It is a new journey for us and I am so thankful for the mamas out there like you who share so much. I wrote about our diagnoses here, if you'd like to visit ... http://welcomecompany.wordpress.com/2013/06/15/in-real-life-there-is-autism/ Your artwork is gorgeous. Blessings to you and your sweet boy! Danielle

    1. I read your post. :) Your son is beautiful. Continue to focus on the strengths. I liked your fb page too. Looking forward to hearing more about your journey and your life. Blessings to you as well!