The other day I received an email to become 'friends' with someone on youtube. (Not sure if that is what they call it, friends, maybe that's just Facebook.) I quickly took a look to see who it was, sure that it was like any other I got, spam in nature. I was wrong. It was by a sixteen year old girl who has apraxia. I visited her site. She had this poem, that she got off of the Apraxia Kids facebook page, which you can read below. I cried. Not every point is true for Jed, but most is. I am so grateful of the strides that Jed has made. Like I've said in the past he is at a two year old level in speech. Basically we can pretty much understand him, but anyone outside our family can not (except for some words here and there). We went to the park yesterday after going to the doctors to get Moira's cast off. (She's cast free!!!! Yeah!!!!) As we were walking up to the play set I heard a little boy say, "Hi, Jedidiah!" So far I haven't come across anyone else in real life with Jed's same name, so I was supposing that he was speaking to our Jed. And he was. I'm not sure if Jed heard him or not, but he didn't respond. So I told Jed to say, "Hi", and he did. He ran off to play, by himself. Later in the day I had to go pick up our produce box and Jedidiah was with me. Usually it's a fast in and out. The family has one or more of their older children help you load up your box, so it takes just a minute before you take off again. This time there were two other families there at the same time that I knew. So I got out to chat. Jed asked to get out. He saw the kids playing, but he asked, "Where are the toys?" I realized this morning that Jedidiah rarely interacts with the other children. He's more interested in the toys. It's not that he's never played with other children. He will play pretend, or games with his siblings. But I am thinking it has to do with his inability to communicate with children outside our family that holds him back from playing with them. It just makes me realize that he still has a ways to go.
This 16 yo girl wrote something very interesting. She said that although she knew from a young age that she had a speech problem, it was only because of being told by her parents or speech therapist. She said, that for her, she hears herself talking normally! I realized that this is the same case for me when I mumble. I seriously hear myself say the words clearly. Others have gotten impatient with me for not repeating myself, without being asked, as they assume that I know I am mumbling. But I don't know! Otherwise I would have repeated myself immediately. Maybe that is true for Jed? Some day we may know.
Here is the poem:
http://apps.facebook.com/causes/posts/1739?m=90525af8&ref=mf
~I Am the Child
I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much....whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself; I do not give you understanding as you know it.
What I give you is so much more valuable... I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk. ~
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