On the Friday before Mother's Day, the kids and I sat in the van and I opened my mother's day gift from Chloe up in the parking lot. She begged me to, she could not wait until Sunday. I made a big deal and ooohed and ahhhhed over the simple bead bracelet and card she had made for me in preschool. And all of the sudden, Lilli started to cry. She put her hands over her ears and threw herself back in her seat and cried, out of the blue.
Because Lilli cannot talk, she cries for most of her needs. Having pictures to communicate has helped some, but there are only so many pictures Lilli will use. I immediately thought, she's hungry. But then realized, no, just fed her. Then: she's bored. No, she's tired. She wants a movie, or music. She's hot. Hmm. Maybe she is overstimulated and wants us to stop talking.
I always go through a mental list of her basic needs. And then it hit me. What if she is upset because I am making a big deal out of something Chloe made for me, and Lilli has nothing to give to me? Is it possible that she is aware enough that she is actually jealous and upset?
Lilli does not give the kind of feedback that a typical child does. Most of the time she seems to be focused on other things. Movies, music, the toy she is playing with, her shoes, her fingernails, etc. How do we ever know what she is thinking? We don't. I have no way of knowing. Honestly, much of the time, Lilli does not seem to be aware of what we are talking about or doing. She does not seem to care. But that is because of the way she acts. I have to constantly remind myself to give her the benefit of the doubt, and hope that she does in fact know what we are talking about. That she is paying close attention even though her head is turned away and she is deeply involved in one of her favorite activities We get hints that she does. I guess it has a lot to do with what is important to her. For example she will come running from the other side of the house if I say "Let's watch a movie and eat cheesepuffs!" If we go to the park and I say, "Lilli, want to swing?" she takes my arm and drags me right over to the swing. I know she understands a lot. I just don't know how much. So I have hope and I continue to try.
I explained to Jasen that Lilli might want to give me a present too, and that he would have to help her. Even if we did not know for sure that she cared or understood. It might be important to her, therefore we should do it for her.
Jasen stayed home with Lilli during church, because she has been having so many seizures. When I came home, there was a gift on the table for me. He took Lilli by the hand over to the gift, and guided her to "hand" it to me. She wriggled to get away. I held her in place while I opened it as fast as I could and made a big deal out of a bracelet with pink, blue, and green plastic beads. She looked the other way. Jasen later told me that he had bribed her with cheesepuffs to get her to "help" make the bracelet, which means Jasen made it while trying to have Lilli help him in some way. I slipped it on and tried to give her a hug. She wrestled away from me and grabbed my arm, pulling me to the snack cabinet. She wanted a cheesepuff.
I tried to show her the bracelet she had "given" to me. "Lilli, look! Lilli look what you gave Mommy! I love it!" She would not look at it. She pushed my arm away, and whined.
A few hours later she had a seizure. A few hours after that, the bracelet broke as I brushed my arm against the couch while holding Josh. I sadly picked up all the beads off the carpet and wondered if Lilli would want me to fix it or not, if she even cared in the least.
Sometimes I am numb to these tiny heartbreaking moments which happen daily. Did she "get" that it was Mother's Day? That it was a gift from her to me? Sometimes I shake my head and think, why. Why take all of that time if she doesn't care or understand at all?
Because she might. That's why. And because she's mine, and I love her. I think that might explain the essence of a mother's hope for a child who has autism. Hope for the impossible. For the unseen. For what might be, someday. How can I live any other way?