I am grateful for his words. There have been so many times I have not been able to say that. Today I can. Maybe not to tomorrow since with him and his regressive autism, I never know if he will lose words again. Today, he can tell me he has a tummy ache, that he has been pooing too much and that he needs medications. Today, he can understand when I tell him he has to chew the pill even if it tastes bad. Today, I don’t have to guess what’s wrong, he can tell me. This is not always the case. Some days he loses words. He can’t tell me why he acts how he does or if he hurts. There are days I spend the day watching him, trying to see the signs, hoping I am guessing right. I admit, over the years have gotten good at the guessing game. I see the signs and can help him through most things. Today I am just glad I don’t have to.
I describe Zach as minimally verbal. Which people often tilt their heads at me like I have just called him an alien. I can’t figure out a better way to describe him. He can understand most everything said to him (when he chooses to listen, he is a teenage boy after all). However, he can’t always form the words to tell others what’s going on in his head. He tries, but too often he simply can’t find the right words.
Over the years, he had gotten good at finding creative ways to tell me what he wants or needs when his voice fails him. That is when he can’t find ways to do whatever it is without my assistance. When he can’t he will come up with the most creative ways to tell me what he needs or wants. From queuing a video to tell to taking me by the hand and leading me to whatever it is he wants; he has even pulled up Google maps to show me where he wants to go.
We sometimes go for days or weeks when his voice escapes him, thankfully he is patient with me when I am too daft to understand him during this time. I try, but he is a complicated person and even knowing him all his life I still don’t always understand him.
Today I don’t have to. Today I walked downstairs to find him in the living room, he said “Good morning Mom” I replied “Good morning Zach, how are you?” he responded with “I am pretty good.” When his voice is failing him he can sometimes respond and sometimes not. Often it feels like he is simply following the script, repeating what we said yesterday and the day before when his voice is there he initiates. His responses are not always the same. Those days I see more of who he is and love the communication we can have. His normal scripted response is “I good”, the phrase “I am pretty good” is new.
Tomorrow might be different, but today I will share my words with you and hope his tomorrow is filled with more words. More new words would rock. However, I will be happy if autism will let him keep his voice. At least until he gets to the stage where he annoys me with a million questions (a mom can dream can’t she?).
This weeks comic –