I remember the moments vividly and painfully. I have some of them on tape.
“Evie, what’s your favorite color? Evie. Evie? Evie, over here. Evie, look at mommy. I’m talking to you. Evie, listen. Evie? What’s your favorite color?” I asked repeatedly in my nicest mommy’s-on-video voice, my disappointment and impatience obvious anyway.
“Blah, blah, blah,” she finally replied looking at the camera but not in the camera. Literally that’s what she said. Blah, blah, blah.
“Blah? Blah? Blah?” I repeated confused and heart broken. “That’s your favorite color? No, it’s not. Come on, silly. What’s your favorite color?”
She never responded. Instead she turned her back on me to play with the staircase spindle, a favorite past time at the time. She was 3.
Eventually Eve learned the answer to that question was “red”. “Red” made mommy and everyone happy. But soon enough I was on to her.
“Evie?” I asked one day. “What’s your favorite color?”
“Red”, she replied automatically.
“Oh, yeah? And what’s your favorite food?”
“Red,” she replied again.
“Really? Okay, then. What’s your favorite book?”
“Red!” and this time she started laughing. She had no idea what I was asking her. She had simply learned that the word “favorite” should be followed by the word “red”. I was devastated all over again.
Over the years, I have had to wait a long time for her words to truly come. I am a language teacher by trade and it has been with incredible interest I have watched as she has learned her first language the way someone learns a foreign one. The difference is, however, she has nothing to compare it to, nothing to fall back on when she can’t find the word in her own language. I can only imagine her frustration.
By kindergarten we were mainstreamed without an aide, but we weren’t out of the woods. In that year as well as first grade, I almost gave up asking how her day was because it was too painful to hear the silence. “Good” became the new “red”. It stopped there.
But “good” wasn’t good enough for me. I wanted more. And soon I realized I could sort of get to the bottom of things by giving her questions to respond to that had a choice.
“Well, was it fun or boring?”
“Did you have gym or art today?”
As long as there were choices, she could respond authentically. Without them, however, she was stuck.
This method of communicating continued for years. By third grade, we were finally up to full responsive sentences. There were even appropriate gestures and voice inflections.
“It was fun! I really liked it!”
Still, it was hardly the conversation you hope to have with your daughter about her school day. Most of what I learned about what was going on had to come from the other moms at the bus stop. It sucked.
In fourth grade, Eve got even better. Occasionally she would ask me something about my life, and her sentence production increased dramatically. Although it still wasn’t the flowery, spontaneous give and take type of conversation I dreamed of having, it was a conversation.
That said, I knew her real thoughts and ideas were right there lurking behind an invisible barrier. I just knew it. And one day, she let me know it.
“Why won’t my brain work?!”, she started slapping herself in the forehead while doing homework. “What is wrong?!” she kept slapping. Hard. Angrily.
Stopping her and trying to calm her down I listened to her lament.
“I know the words, mom! I know what I want to say, and they won’t come out!”
The air was sucked right out of me. Eve was becoming aware. She had likely been aware for a long time. I was so sad for her and yet strangely happy. This was progress.
From that point on, we’ve worked even harder on the skills to help her get to the word she needs. I’ve added TPR training to her daily vocabulary practice. TPR stands for Total Physical Response. Vocabulary is best learned not through pictures and recitation, but through repetitive, exaggerated actions. (You should have seen me flapping on the floor last week trying to teach the word “flounder”.)
I’ve also taught her to rely on circumlocution, which is the ability to describe the word you need without saying it. “It’s an animal that…” or “It’s a place where…” She’s actually done remarkably well with both of these methods I use in my classroom every day.
This was an exchange just last summer when she wanted to buy her sister something for her birthday.
“Can we go to that store, mom?”
“No, not Target.”
“What store, Eve?”
“You know, that store we go to?”
“We go to a lot of stores. Can you think of where it is?”
“Yes! Um, wait…(long, long pause) what’s that thing Maddy does again?”
“That thing with the pink shirt? With her friends?”
“Pink shirt?” my mind was searching, desperately trying to help her. I could see her frustration. In the past, she would have given up by now. I wasn’t going to let that happen.
Finally, I realized what she meant. Pink shirt? No, pink leotard!
“Do you mean ballet class? The dance studio?”
“You want to get her something for dance?” I asked not understanding at all how any of this was connected.
“No, no! It’s by there!”, she got angry.
“What’s by there?”
“Oh, Sears? Do you mean Sears?” Sears is next door to the dance studio.
“Yes! Sears!” she slumped over with exhaustion. “I want to go there and buy her a toy.”
I stared at her in awe. This poor child at 10 years old just worked harder to get to a word than any of my AP students ever have. She went for one word and couldn’t get it. She went for her alternative word, and still couldn’t get it. She went for the third word, and it still wasn’t there. I cannot even imagine.
Well, that was last year, and I’m thrilled to say, her speaking skills have skyrocketed. Coincidence or not, at the beginning of the school year the new speech therapist asked me what the most important skill was she wanted me to have them work on. I wrote the following:
“I want to have a conversation with my daughter. A real conversation. One with give and take and spontaneous questions and abstract ideas. That’s what I want. My daughter is 10 years old and I have never really talked to her. If you can give me that, well, there wouldn’t be enough words to thank you.”
I remember crying when I wrote it. I talk to my 7 year old all the time. About everything. I know every aspect of what happened in everyone’s life every day. Nathan acted crazy today. Natasha got chased by the boys. And I would simply not believe what happened in gym class. Our conversations are rich and layered. She’s never at a loss for words. Ever.
Eve speaks. She speaks wonderfully. I don’t take a word out of her mouth for granted. But a real conversation? Never did I think while on my knees praying for speech I had to be so specific.
Recovery has been a long road. Every day is another small victory. A phone call from a friend. Remembering the code to get into the house. Showering in under 45 minutes without a prompt from mom or dad about what to do next.These are big victories for us. We relish them. Tonight was no different.
Up the stairs to get ready for bed, Eve brought along a peeled orange. She put on her pajamas and asked if she could eat a few slices before bed. I agreed.
While waiting for her to finish, I asked the typical questions I do everyday, not expecting anything different.
“So how was your day today, honey?”
“It was great.” (great = good = red)
“Oh, yeah? Why?”
This would normally be followed by a shrug or an “I don’t know”, but tonight she answered.
“I had art. We’re making sculptures.”
“Wow! That sounds awesome. Out of what? Clay?”
“No, cardboard boxes. It’s really cool.” Her eyes lit up.
“Sounds like it.”
She finished chewing and looked right at me.
“So how was your day?”
“My day?” my eyes bugged out of my head a little. Did she just ask me how MY day was? My heart skipped a beat.
“Well, it was a busy day. I’m tired.”
“Well, I had a lot to do.”
“Like teach all day and take care of you guys. I even worked out.”
She ate another slice and then continued.
“What’s it like being a teacher?”
“Well,” I paused taking in this magical exchange. “You’re on your feet all day. And there are lots of papers to grade. I have to go grade some now.”
“Oh, yeah. You do have to grade all the homework.” She emphasized the homework (something she loathes), paused and took another slice, looking around in deep thought. “If I were a teacher, I wouldn’t like that. I wouldn’t do that.”
“You wouldn’t grade the homework?” I laughed at her. She was serious.
“No, I wouldn’t have to. I wouldn’t give any.”
“And what class would that be might I ask?”
“Art. I’m going to be an art teacher. There’s no homework in art!”
She giggled, almost making fun of the fact that she was going to teach what she perceived to be a better subject. I was floored. She actually really does want to be an art teacher.
We continued talking for a good five minutes longer. She wanted to know how many days until March because her birthday is in March. We talked about her birthday plans and she suggested three party options, equally fun I must say. She remembered at one of the options she left a beloved stuffed animal years ago and got sad thinking about where he may be these days. And when I asked her who she wanted to invite, she counted on her fingers that she really only has four friends, to which I replied, “It’s not the number of friends we have, but the quality of friends we have that matters.”
“Oh, yeah,” she nodded in agreement. “They are good friends. I’m lucky.”
Oh, yes, Evie. You are lucky my sweet child. And so…so…so am I.
Ten years. It took ten years to finally talk WITH my daughter.
Never give up, everyone. Never, ever, ever give up.
Julie Obradovic is a Contributing Editor to Age of Autism.