My dad was in a band my entire life. When I was very little, he was in a rock band named Crossfire. He was going to make it big. He should have. My dad was extremely talented. They made a record and went on tour briefly before realizing he couldn't be away from his family so long. However, one of the songs that he recorded sticks in my head pretty consistently. It was called "Can't Change My Heart" and I don't know if it was a cover or if the band wrote it but tonight when I was working with Imma, one of the verses kept playing over and over in my mind. "You can build me up, just to tear me down, but you can't change my heart, can't change my heart." I wasn't sure why the situation reminded me of those words, whether I felt like I was tearing her down or building her up but I had the distinct feeling that something, something important was happening in her head and I just had to weather this storm to get to the rainbow on the other side.
I've been pushing her a lot lately. I feel like she isn't living up to her potential. She isn't reading like she could be, she isn't writing at all, she's behind in math. I know she acts differently for me than she does for her teachers but I also know, as a teacher, what it's like to work with a child when you're not sure what they are capable of. If you meet resistance, you're more likely to stop or let up. With Imma, the resistance is consistent and relentless. Every time I push, I get ridiculous laughter, animal noises, howling, unintelligible jibber-jabber, or physical movement away from where we are working. I can completely understand how a teacher could meet anyone of these responses with the idea that she is not capable of doing what they are asking her to do so leave her alone and try again later.
Except, she was fully capable of doing what I asked her to do and then some. And I know that. So I pushed back. I asked her what letter makes the /p/ sound. She howled at me. I asked again. She laughed hysterically. After about five minutes of going around and around, it took me asking her if it was "w" to finally get her to say, "No, Mommy, it's 'p'!" Every single time I asked her a question, we would go back and forth until I finally got her to answer me. But she was fighting just as hard as I was. I know that she's not writing much at all in school, but I got her to write, "Clifford plyas in the sno." She copied the word Clifford, she knows the word "the," and the rest of it she wrote phonetically. She can do it. She CAN do it. But I can't figure out if she just doesn't want to, if she doesn't know what I'm asking her to do, or if she just can't get her mind and her hand to cooperate long enough to get the work down on the paper. I hope this doesn't come across as ugly or unloving but it is slightly disturbing to watch your child contort her face and laugh in an almost crazy sounding cackle when you ask her what sound a letter makes. I have got to figure out a way to make her understand what she is supposed to do and find another way to respond when she is asked to complete a task because I am honestly worried about how other people may interpret this response. If I find it odd and she's my child, whom I love and understand better than anyone else in the world does, how do her teacher and classmates perceive this response?
At one point when I was growing extremely frustrated, I took her little face in my hands, and asked her to look at me. At first, she wouldn't do it. She looked down, she looked across the room, she looked anywhere but at my face. I finally got her eyes to lock on mine for just a brief moment, and in that moment, I think I may have seen past the disorder and actually glimpsed the Imma I am trying so desperately to unlock. It was only for an instant but her expression changed, and I thought, "There it is! There is the 'normal' we've been searching for!" And just as quickly as it appeared, it vanished. She scrunched up her face again, wrinkled her nose and said something I didn't understand. I don't know exactly how to explain what happened in that moment, it's not as if Imma never seems normal or always acts like there is something "wrong" with her, but this is the first time that I actually felt like we were closer to getting where we want to be than I had realized. Like a lot of parents with differently-abled children, I have dreamed of a day when I wake up to the child I thought I was going to have. With some brief remark about having a strange dream or feeling different, she would just go on about her life like a normal five year old. Of course I don't ever expect that to really happen. All of our steps are baby-steps. But looking into her eyes for just those few seconds made me think that maybe someday she will be able to tell me what was going on in her head for all of these years when she just wasn't able to tell me what she was thinking.
After this little experience with the homework, the rest of the night was shot. It was a battle getting her to do--or not do anything. She usually goes to bed at 8:00 but tonight Daddy put her to bed at 7:30 because she just could not leave her dog alone. You would think being bitten this morning before school (nipped on the hand, no blood or teeth marks) would have been enough to show her that she shouldn't pull on his legs or pick him up by his ears. But she just doesn't get that yet so after being told several times that she was going to bed if she didn't leave him alone, she ended up earning her consequence and off to bed she went.
She did not go willingly or easily. In fact, getting her into her bed was much like boating a marlin and getting her to stay was trickier than keeping Houdini in a box. She was kicking the wall, throwing things at the door, screaming at the top of her lungs. Brian went in two or three times and tried to explain to her that she had made bad choices and this was her consequence. I finally went in myself, put her in the bed and held her for a few minutes, smoothing her hair and talking to her about why she had to go to bed. She kept repeating a line from a movie, "Please, I'll do anything. I'll die. Please let me out of here." My response was to repeat that she needed to go to sleep, it was bedtime, we had to go see her teacher in the morning and eat cereal. She started speaking gibberish. I knew she was trying to tell me something but she literally could not form the words. What she was saying sounded like a foreign language. It was the same intonation as English, same phrasing and phonetic sounds. It was not English, nor was it any other language. But it was a message. I kept saying, "Use your words, Immy. I don't know what you're trying to tell me." She grew more and more frustrated. She started licking he fingers and putting them in her dimples, and smiling really big, like she was Spongebob or someone on a cartoon. Then, she'd do it to me. More unintelligible words. I encouraged her to keep trying. I said, "Do you understand that you can't touch the dog like that?" Finally, she said, "Mommy, doggy's not hot. He's cold." She thought we were telling her not to touch the dog because he would burn her, like we tell her not to touch the oven! I said, "No, honey, you'll hurt him and he'll bite you." "No he isn't. He's not bite you." "He bit you this morning." "No, he's not bite you. It's okay. He's a good dog." At least I was able to understand what she was saying, even if she wasn't understanding what I was trying to tell her. I finally got her to let me sing her a lullaby--something she hasn't let me do since she was about six months old--and she rolled over to go to sleep.
Maybe it's wishful thinking, but I just feel like this was an important evening, that we are in a treacherous and steep part of the journey but the road ahead will be smooth and downhill. It seems like Imma always struggles and rebels when she begins to develop new communication skills. I just kept reminding myself that we have come so far. She has made amazing progress. I think she finally knows how to learn. Most of the skills she has learned over the last five and a half years have had to have been taught to her individually--word by word, phrase by phrase. It seems to me like she may be figuring out how to pick up language the way the rest of us do. When her brain gets overloaded with this information, the silly sounds and laughter takes over because she doesn't know how to process it. Does that make sense?
If anyone has any experience with this type of a situation, I would really love it if you would message me or leave a comment. Without a diagnosis, without a cause or a proven therapy regiment, it is so difficult to know if we are moving in the right direction, if pushing her is really helping or if I shouldn't be pushing so hard. It's all trial and error, learning as we go, hoping we make the right choices, and learning from our mistakes. If anyone has been down this path before, please let me know where the pitfalls and dead ends are!
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| My beautiful Imma |
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