Lu-ese

Thoughts During Autism Awareness Month. 

“Lu-ese.” It’s the language of Lulu. She has her own way of saying words, and many times it’s quite difficult to understand what she’s saying. It becomes frustrating for both her and for anyone who is trying to translate what she’s saying.

Many years ago, Lulu came to me saying “obacor.” She asked me for it over and over. She smiled so sweetly and said it again, as if she were really trying to be patient with my ignorance. When that didn’t work, she asked my mom for it. Then she asked Annie for it. No one could figure out what she wanted. After a period of time that seemed like an eternity, Lulu ran to the other room, grabbed the huge bowl that said “popcorn” on it, brought it back to me, and said “obacor.” Talk about an “a-ha” moment! Way to use adaptive communication skills!

At least once a week Lulu comes up with a new word or phrase that must be deciphered. Sometimes I can figure it out, other times it remains a mystery. If it’s completely unintelligible, even with a lot of detective work, meltdowns happen. Once I figure it out, though, we work on her articulation with her so that the next person won't have to go through that! Lulu has figured out that if she can ask for things, she will likely get them, so she does actually try to sound out words.   

Lulu works on mastering the English language by watching certain videos on YouTube or on the DVD player, typically watching short segments over and over (again, testing the patience of saints for those who have to listen to it) until she has it down. Sometimes she’s working on a song. Her current go-to video? Anything Disney Princess. I have to say, she’s actually very good!!

The number one frustration that I have with autism is communication. While Lulu is able to let me know what it is that she wants, she is unable to tell me how she is feeling and why she is feeling it. Sometimes she bursts into tears for no apparent reason. I don’t know if she is sad. I don't know if she is not feeling well. I don’t know if she’s lonely. I don’t know if she’s confused. She is effectively nonverbal. It can heartbreaking. And I know that many other parents of children on the spectrum feel the same way. And that is why it is so important to have patience.