Sunday, November 18, 2012

Imperfections

We live in a world where others' perception of your life is very much defined by your Facebook status. I, for example, don't post things like "Checking my bank account to make sure I have enough for the ridiculous amount of groceries and diapers I need" or "Can't wait for this period to end. I sure am tired of bleeding through my underwear". Those things, aside from being embarrassing, paint a picture of my life that I'm not sure I want others to have. I tend to focus more on how happy I may be at the moment, or maybe my kids have just done something amazing that I want to brag about. This type of mentality carries over from social media and has huge impacts on everyone's daily lives.

As parents, we are all guilty of over-bragging and/or showing off. We're viciously competitive. Next time you take your kid to the pediatrician (one of my favorites), look around the waiting room. It's full of moms who are very loudly (and obnoxiously) trying to prove that not only are their kids are smarter, cuter, and overall better than yours, but they are better at parenting. ("No, no, William Alexander. That's not an appropriate way to express your negative feelings. Now come over here and recite the presidents of the United States for mommy.") Honestly, it's enough to make a person vomit.

I'm the first to admit that I'm very guilty of this. I'll dress my kids like they're headed to a Baby Gap photo shoot even when we're just running in Walmart for a gallon of milk. Everyone is impressed with them and I never come back home without hearing from complete strangers how adorable and well behaved they are. Unless Carter is with me.

I began wondering if Carter might possibly be mildly autistic about a year ago. He has this way of shutting the rest of the world out. Not like a normal stubborn kid who just doesn't want to listen to mom. He gets this blank look on his face like he truly is the only person on this earth. I can even yell his name and he doesn't flinch, doesn't tense...nothing. His hearing is perfectly fine, he just disappears inside himself at times. He also gets incredibly excited. Put that with his impressive ability to NOT seem to hear anything, and it makes going out in public very difficult at times. I'm that person with the screaming kid that you think "Wow, maybe if that mom would just bust that kid's ass..." Been there, tried that. Not only does he not feel pain, but he doesn't seem the least bit phased when I act upset with him. I'm not going to physically punish him just to do it. 

His unbelievable tolerance for pain terrifies me. He's also incredibly clumsy. We've had his face stitched shut twice this year. A few weeks ago, he ran his hands through the glass in our back door. His only concern was not that his hands and arms looked like they had been through a paper shredder, or that I was picking glass out of them for about 20 minutes, but that there was blood on his hands that he wanted to wash off. He jumps off of the furniture and off the stairs and pushes himself to see how far he can jump. I'm really afraid he's going to hurt himself badly enough that a few stitches wont be enough to fix it. He also doesn't seem to realize that other people hurt. He threw Natalie off of the coffee table this morning because he wanted to sit something where she was. 

He's very particular about what can touch his hands. I had made these cute little handprint turkeys with Jake and Natalie a while back. Carter would stand there and watch them do theirs and I could tell that he really wanted to make one too, but it took me a week, and a lot of tears, to get him to let me paint his hand. If his clothes have tags in them, he strips them off and says they hurt. I can't play with his hair. As wild as he is, it's heartbreaking when he gets overwhelmed. He either completely shuts down, almost like he's paralyzed or he launches into a monstrous tantrum. 

He had his first eye exam about a week ago. His right eye turns up and out - not something I thought was a big deal because we went through this with Jake and, with a little patching, he grew out of it. Well, Carter's isn't just a "lazy eye". The optic nerve in his right eye never fully developed, leaving him with very poor vision and very poor muscle control. Once we get him in his glasses, we are going to attempt patching to see if there is anything in his right eye that we can salvage. He also has severe cupping. His cup to disc ratio in both eyes is 0.85. This is what is monitored in people with glaucoma. He doesn't have glaucoma (thank God) but the cupping does leave him with a big risk of some pretty scary stuff like retinal detachments and subsequent blindness. 

His speech is quite delayed. His vocabulary is great but he is very difficult to understand. He has very poor muscle tone in his face and tends to drool a lot. When he speaks, he replaces sounds with ones that he only needs the front of his mouth to say. We've started speech and occupational therapy to help with his speech and sensory issues. While we were at his OT evaluation, one of the physical therapists was watching him run in the hall. Apparently she felt that the way he runs is something that we should take him to Shriners for a consult for. This really scared me. He can't see, he can't talk, he can't feel anything but at the same time, he feels too much. Now they're telling me he can't walk either?!

We're in the process of having several other evaluations done. All of this is being sent to the children's hospital at Vanderbilt. I'm not entirely certain that he is on the autism spectrum. It certainly wouldn't explain the strange things he has going on with his eyes or even his core weakness or muscle tone. He also has formed wonderful relationships with myself, Bob, and his brother and sister.  He has some incredible strengths. I've never seen a three year old work puzzles like he does. He's an amazing problem solver. He's so sweet, even when he's in the middle of an hour long tantrum. I'm worried and scared for my baby boy though. We live in a world where it is so hard to be different. I don't want him to be labeled, but at the same time, I want someone to tell me what is wrong so I know how to fix it. Mostly, I don't want to fail him. He's such a wonderful little boy. I just want him to get everything he wants out of life and I hate that all of this could potentially stand in his way. 

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