The only perspective we have of the world is our own. As much as we try to put ourselves in someone else’s shoes, we really have no idea of what their walk is like.
My daughter Jess rarely speaks. In 22 years, she has said 100 words. When she was a toddler, I remember getting excited because she pointed at something instead of speaking. Unfortunately, she quickly realized that gesturing her wants and needs was easier than all the motor planning it took to get her words out. It never occurred to me that she would not be able to speak. We just kept encouraging and waiting for the words to come. It was obvious that she understood what we were saying, but when she went to verbalize, the words were garbled like being on the phone with a bad connection.
She still likes to rely on gestures, however, her AAC speech is blossoming. My heart is a little saddened that she doesn’t compose sentences per se, but instead, Jess uses a few words to make her thoughts known. In some ways this is just brilliant. She chooses words in an efficient manner which allows her to keep up with a conversation. When I was learning how to speak through her iPad, I felt the need to use every word. By the time I had composed a sentence, the conversation had moved on at least three times. For a parent, learning how to model language on an AAC device is a difficult concept to wrap your brain around. We talk in full sentences and it seems awkward to omit words. In comparison, Jess assessed her needs and the situation and developed a very efficient means of speaking. This is ironic because where I’m learning to pare down sentences, she’s trying to make complete ones.
My present quandary is finding a balance between control and structure. Jess needs freedom to make choices. She needs to also learn personal boundaries (like not going into my pocketbook looking for gum). I want to encourage both communication and independence, but where does the balance lie? We are trying to emphasize how important communication is, I feel as though I am controlling the rest of her world too much.
If I don’t allow freedom, then the end result is Jess becomes sneaky.
For several years, we had to lock the snack cabinet. When she found her voice through SFY, we no longer needed to have such tight control over treats (M&M’s to be specific). This doesn’t always go smoothly. She hasn’t met a bunch of bananas that she didn’t like. I don’t know if it is because she is so hungry or because she has no governor when it comes to bananas? For now, she has earned a new nickname, Foxy. Foxes don’t just kill what they need, but they will kill every hen in the hen house because they can’t help themselves. Learned this from experience. In our home, a bunch of bananas don’t stand a chance, they are all going down together.
I have no idea what Jess thinks about all of this. I’m trying to understand her perspective, as well as, how she internalizes information. She is constantly trying to make her own rules. How do I find the balance between redirecting her to keep her on the path and letting her figure it out for herself? Jess doesn’t just color outside the lines, but she walks outside them too. All I can say is that this has made for an interesting journey.