Friday, October 14, 2011

noah chronicles. 6

You may be wondering why I am sharing all this. Or, more precisely--why now? There are many reasons, and I always knew there'd be a time that I'd want to share about our life with Noah. But, the time never felt right. Mainly, I want to share now because I want you to be part of our journey. I want you that know him to maybe understand him a little more. Also, I am sharing now because the story is getting better. Noah is growing. He is maturing. And, while that is incredible and lovely--I don't want to forget about the "before". I also pray that perhaps in sharing, another parent with issues similar to Noah's will be relieved to find out that their child is not the only one. Many of you have expressed deep concern and support as you read these posts. That has touched me deeply and I thank you.

I have often remarked that two things have never come naturally to Noah: joy and trust. He has from infancy seemed to be always tense, always awaiting the slightest provocation or hint of danger--and then finding it in the most trivial or confounding thing. We have worked long and hard with him on this. Reminding him to choose his attitude. Choose to be kind. Choose to be polite. Choose to respond with a happy tone as opposed to screams or anger. Choose to allow someone he doesn't know well the chance to become a friend.

So, when someone tries to tell me that they think Noah is okay, because "he seems so happy and normal", I choose to take it as a compliment--because I know how hard we have worked for him to appear that way. I also know how hard I work to make sure "the public" sees his best side.

All a parent wants (at least this one!) is for people to love their kids. I know (believe me, I do!) that Noah can be the most exasperating and out-of-line kid there is. I also know him to be deeply intelligent, fiercely loyal and tenderly affectionate. I know that he thrives on praise and holds himself to a standard of perfection. I know he loves to be able to help, loves any music with a good rhthym. I know that he can be endearingly goofy and extremely polite. So, I find myself trying to make the stars align so that whenever we are out in public, that Noah comes out. I try to keep my face relaxed and jolly, while inwardly my stomach is tied in knots--awaiting that unforeseen thing that could set him off.

From the time Noah was an infant and I began noticing his extreme sensitivities to everything, the taboo "A" word began lurking in the back of my mind. I would always just shove it to the side, confident that whatever was going on was just a mixture of "a phase" and a momma who wasn't doing things right. No child of mine could have autism.

As Noah passed the 2-year-old mark and still was presenting many difficulties where I would see other kids just "dealing with it", I began to face the facts. Noah wasn't like everyone else. He may never be like everyone else. He may never learn to control his emotions and impulses. I looked at those facts and found myself in a deep valley of grieving.

I grieved the dreams I had of what motherhood would be. I grieved the freedoms I had lost, and would perhaps never fully get back. I grieved for the judgements on us that we had endured and would continue to endure. I grieved not really knowing what to do. I grieved that this is not what I had expected. I asked "Why me? Why Noah?"

There are very few days that go by that I don't in some way grieve what is.

During that time, Noah's obsession was taking all his clothes off. All the time. I quit fighting it around the house, but of course would insist that he wore them to go places. Sometimes that was okay, sometimes it wasn't. Once cold weather hit, I had to make him wear clothes. I had to put his clothes on and safety pin his pants to his shirts. I often had to physically wrestle him to the ground and pin him there to get him dressed. He refused to wear hats or coats.

He also was obsessed with eating all kinds of things. Dried beans, dried pasta. Rabbit poop. Dog food. At one point, when I changed his diaper, I found over 20 of those red and white marker pegs from the Battleship game there in his bowel movement. He was extremely secretive while downing these things, too, so I was constantly running around behind him checking his mouth.

Potty training didn't go well, because sitting up on the toilet frightened him. He didn't get the point of the kid potty. He never told me when he had to go. I decided it was a battle that I would let go for later.

At the end of 2010, I began communicating with my cousin who is a Speech Therapist working at Easter Seals. I shared with her my observations and concerns and we began conversing back and forth. She talked about Noah having "sensory difficulties" and wondered if there was a place in Mexico that he could get taken to and be tested.

I was concerned about that for several reasons. A main one being that Noah is comfortable in English, he would shut down in Spanish-speaking environments. I didn't think a Spanish screening would be accurate. Also, in many ways, Mexico is at least 50 years behind the US, and I wondered if they would have the newest information on what would help Noah?

It was during that time that we just felt God orchestrating a lot of puzzle pieces together that were pointing us back towards the US.... guidance for Noah being one of the biggest.

Naked as the day he was born...

Happy, happy, happy!

Listening to a good beat...

Endearingly goofy:

Part 7 here:

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