Had Big Plans for a different sort of post today…

30 Sep

…but that was before I got a phone call 30 minutes into the school day to come get The Princess because she is sick. Nothing major. A low grade fever (which has been treated) and crying inconsolably (probably because she felt like poo).

Communication is so essential for life at its simplest. The Princess can’t tell me what hurts or how she feels. I have to do some trial and error in that area and she may suffer longer while I try to figure it out. It breaks my heart, but it’s the best we can do at the time.

Toward the end of the summer 2010, we went to The King’s high school reunion and left the kids with my Dad and my brother while my mom was at a wedding. To say my dad and my brother had an eventful time is underscoring it a little. The Princess had a blow-out ten minutes after we left that my dad had to take care of (my brother refuses to go near diapers). Then one of the kids pooped in the wading pool. At some point, The Princess hurt her arm. Her right arm, her dominant arm. She was holding it. She didn’t want to straighten it. She didn’t want to move it. She was trying to do things with her left arm which is pretty impressive for her-who-wants-her-world-not-rocked. My father was extremely worried. He didn’t know exactly what she had done, if the arm was actually broken and she couldn’t tell him. Well, her arm wasn’t broken and eventually she consented to allowing my dad to straighten it and then seemed fine. We figure she probably bumped her funny bone and was scared that it might hurt to move her arm. But that incident proved to be the moment I realized, it’s going to be really tough to not communicate through normal venues.

We have tried picture schedules and The Princess does not take to them at all. We have tried to teach her to sign. She has two signs and has been unable to learn more as of now. She mostly communicates via finding an adult and directing them to what she wants/needs. It leaves a lot of room for error on both sides.

Will The Princess ever be able to speak? It’s not clear, she may be able to eventually learn to use pictures for her wants and needs, but even signing seems a long way off. Neurologically, the part of her brain controlling speech just doesn’t work the way the rest of ours do. And no one understands how hers works.

Over this past summer, we were at the beach and my brother’s girlfriend, who is in graduate school to become a speech-language pathologist, was listening to The Princess loudly protest something we had denied her and said, “Do you ever wonder what she would be saying if she could talk? I bet she would be telling you EVERYTHING.” That’s probably true. One of The Princess’s former teachers believes The Princess would tell a person or two off. I could see that happening.

I remember a friend whose son has autism and is able to speak telling me that he and The Princess don’t want to be like everyone else, they want everyone else to be like them. Life sure would be simpler. It would be honest. And it would still be wonderful.


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