This is the best pic of Gigi that I have gotten so far. Mind you, I’ve taken about one thousand of them, but the girl is like a ball of perpetual motion. She giggles and RUNS when she sees the camera. She spends a lot of her time giggling and running lately. There are so many new things to see and do. She has given up being nervous and unsure already and is ready to follow her sibling’s lead in this world with reckless abandon.
She has five spontaneous signs now: eat, sit, water, bath, and Tess. Of course, Tess. Tess’s Gigi has become Gigi’s Tess in the blink of an eye. We all knew that would happen. Cate is still a little more reticent, but, we’re getting there. We’ve entered that phase where there’s a feeling of peace. We’ve got this plays in my head when I wonder about the future of our girl.
Now, like so many times before, it’s a matter of convincing the rest of the world that SHE has got this. We’re madly filling out IEP paperwork, coordinating therapies and finding the best ways to teach her some of what she has missed. We’re doing this while balancing the major life change she has lived through. I received the preliminary draft of her IEP paperwork in my in basket before the holiday. IEPs tend to highlight a child’s deficits and not speak to their strengths anyway. Since Gigi is JUST making her strengths known, her paperwork doesn’t list any of these. It breaks her areas of delay into sections. Delays in: fine motor, gross motor, speech, social skills….and then…
They listed her as having a cognitive delay. I showed it to Joe angrily. “Well, doesn’t she?” NO! She’s the smartest little thing I know, she has five signs! She understand everything we sign to her. After only a month with ANY language at all, she does ALL THESE THINGS. “Becky, look at it from their point of view. They’ve set the bar against average almost 4-year-olds.” “Pfffttt…” I scoffed. “Hearing almost 4-year-olds. Not deaf almost 4-year-olds.” His answer, “Um, I think she would still look cognitively delayed.”
That was so hard to hear.
But why? Why would it be so hard for me to have her carry a label of ‘cognitively delayed?’ Before she came home, I told myself I didn’t care. What was, well, it simply was, and we would love her for exactly where she is at. I thought about it for a long time. The answer I came up with is simply that I don’t want her to EVER be called…
How silly is that? Who cares? We all know it’s not true. She likely won’t be able to hear whoever says it. Her brothers and sisters will have her back. So, let them say it, right?
That word, it is my kryptonite. I hate it. It’s like nails on a chalkboard. In this house, it is as bad as a racial slur. It is NEVER uttered. I am terrified of the power it holds. I don’t want THAT word to refer to my daughter. I think it is a matter of my own pride, and not wanting her to ever feel the sting of it, yes, but I think it’s also a matter of not wanting her pigeon holed in to being thought of as incapable simply because she can’t hear.
We are now entering a whole new world here, new terrain where I will have to take the lead on educating myself on all the different methods we will need to use to educate her. I have spent countless hours researching things like visual phonics, cued speech, oh my gosh, so many methods, so many hours. This part is totally overwhelming to me.
I printed out the preliminary IEP, marked it all up and sent it back. When it’s done, I’ll file it, and that will be it. It will go in a binder on a shelf, or in a drawer somewhere. It’s not the holy grail of anything. It’s paper. It won’t define her. Because, nothing does. She has no idea about any of what has been said about her. She’s simply the girl who has five signs.
And twelve family members who love her more than anything.
–FullPlateMom, who knows she’s got this.