Thursday, April 14, 2011

A loss for words

And in the same way the Spirit also helps our weaknesses; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God. Romans 8:26-27

I know a lot of people say they "love" their jobs, but I really do! Along with my non-paying (well, not in money, anyway) duties as CEO of the home, Superwife to my sweet hubby (she also has an alter-ego named "Supernag"-- but we won't worry about her today) and Mama to all other living inhabitants (be they fleshly, furry or feathered), I have a "real" job a few days a week. My work comes to me just shy of 5:45 a.m. in the sleepy, snuggly form of my "rental baby," Kaelin.

He's a big two year old now, but when we first met, he wasn't even on solids yet. Through the wonders of facebook, I met up with Katie, an old chum from the church I grew up in. Our families were friends and we had several friends in common, but we'd lost touch while she was in college. I discovered that she was married, about to have a little boy and less than fifteen minutes from me! We talked from time to time about the wonder and weirdness that is pregnancy, one of my favorite subjects. :) Once Kaelin was born, we talked more often. I was dying to see both of them, but life seemed to keep getting in the way of a visit.

Months later, Katie and Kaelin arrived at my front door. Sitting on the couch with my BFF Jillian (one of the many friends we shared), the years of separation seemed to melt away. While the "man of the hour" had his breakfast, his mommy mentioned their need for a nanny when summer ended. When she'd finished feeding him, she asked a silly question: "Would you like to hold him?"

As I softly embraced the precious blue bundle, he nuzzled his head into the crook of my neck, pulled his knees up to his tummy and wrapped his chubby little arms around me. Well, that did it. There was no way I could go months between Kaelin visits! I turned to Katie and said, "If you don't let me take care of this baby, I'm going to have to take it personally!"

With that, I became "Tante" Amy. When his "summer nanny" went on vacation or had appointments, we had the pleasure of K-bug's company. By fall, he was a twice-weekly visitor. :) His milestones all came on-time or early, something you tend to watch for when you are the parent of a child with special needs. He walked well before his first birthday, ate every kind of food imaginable, had wonderful eye contact and loved interacting with all of us. As the months flew by, my "rental baby" was suddenly a running, cracker-eating, dog-harassing toddler! He spent his mornings "shaving" with Uncle Alan, playing with the boys and "Helping" me in the kitchen. By eighteen months, he didn't say very many words, but I wasn't worried. Mama, Dada, Tante, Nana (Alan), Yaya (Wyatt) and "yeah" were used so frequently, I assumed he was just a "typical boy," embracing activity more than conversing. Physical, social and reasoning skills came easily for him and words would come later. He also had learned several signs (more, please, all done, bye, dog, chicken, eat, drink, cracker, help), which helped him communicate with us. If this continued past age two, his doctor would bring it up and his mommy could decide what was best for him. He was doing so much for a boy his age, there was no need to worry about what he wasn't doing.

As he inched towards his second birthday, the words began to disappear. He could throw and kick a ball, put away silverware (properly!) from the dishwasher, follow three and four-step instructions, and pick up his toys. He loved being read to, continued to eat well and seemed to be happy wherever I took him (except his bed, of course!). Every part of Kaelin was blossoming, except speech. He stopped saying the boys' names and Tante, then Dada, then mama. Every person became "mom." The answer to every question was usually "yeah," or occasionally a shaking of his head "no." He grunted, pointed and signed, but there were no more words. I was becoming concerned; but how would I tell Katie? I remembered how I shut out the urging from my sister to get Wyatt evaluated, and he had multiple symptoms. Was it my place? I prayed for wisdom.

When I finally got up the courage to talk to her, Katie told me she had the same concerns and would be talking to his doctor about it. (I was so thankful that God had blessed this little guy with a mama who wasn't as thick-headed as his Tante had been!) When Kaelin was evaluated, he charmed the socks off every therapist in the room (no surprise there!), while wowing them with his coordination, ability to follow instruction and repertoire of ASL. The verbal portion of his test showed where he was struggling, and why. It's amazing what a trained specialist can learn about your child by using seemingly unrelated methods-- such as asking him to say "aah" and click his tongue!

Much to his mama's relief, they had reached a diagnosis. He was not autistic. He was not socially delayed. He was not "just plain stubborn." Kaelin's words were being held captive by a disorder known as Speech Apraxia, or Dyspraxia.

K-bug's words were being stifled by a combination of poor motor planning with his tongue (he could move his tongue all sorts of silly ways on a whim, but intentional movement was difficult), the words being "scrambled" before he spoke them and sheer frustration of not being able to speak "properly." Kaelin knew he wasn't being understood, and he didn't know why. Signing provided the positive response he craved, he remembered the signs easily and had dexterous little hands. When your tongue and language receptors aren't going to clearly express your desire for a cookie, what toddler wouldn't find another way? Clearly, this only meant one thing: my little rental baby is even more brillant than I had previously thought! :)

I had the privilege of sitting in on Kaelin's very first speech therapy visit this week. His therapist spent over thirty minutes engaging him in the best method for little ones: through play. She instructed us to not pressure Kaelin to "say" words, as this would raise the anxiety level of a little guy who is very eager to please. We are starting with simple acts, such as blowing bubbles, playing horns and putting toys up near your mouth during play, so Kaelin would pay attention to how you form the sounds.

With the blessing of early detection, I have no doubt in my mind that Kaelin's Apraxia will be accomodatable, or disappear completely. In the mean time, we have the gift of ASL. Until he finds his words, his hands will give him a voice.

While goodness knows I am not known for a lack of speech, there are times when the words simply won't come to me. Sometimes I'm too frustrated to talk, other times I don't know how to even put into words what I'm thinking. This is rarely the case with people I interact with, but it often happens when I'm speaking to God. In times of anger, confusion or sheer exhaustion, I don't know how or what to pray. I can't even "think" the right prayer. I am so blessed to have an Intercessor for those moments. The Holy Spirit interprets the groans and cries of our hearts to The Father, because He intimately knows and understands us. I am so thankful for a God who doesn't expect me to wait to come to him with a proper thesis, eloquent petition or a perfectly inventoried confession. There are times when all you can do is look heavenward and shout, "HELP!" And because we are His children, that is enough.

Thank You, LORD, for Your willingness to draw from my heart when words won't come. I wish there was a more fitting phrase than "thank you"-- but then, you knew that. ;)

In Lenten Love and Friendship,

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