Sunday, January 27, 2013

Just One Day

Today was just one day.

I realize there are going to be many more days like today. Days where I feel my knees buckle from underneath me and I fall apart. Most days I can take it. Most days I am optimistic, I can see the good sprouting from any of the difficult. I choose to see the brilliant, the astounding abilities, the warmth, the kindness, the absolute happiness from within. But there are some days regardless of my predetermined attitude, I see a peek into the possible future. If I am positively honest with you, it's these brief glimpses that catch me off guard, pushing me closer to my breaking point.

Today we went to run some errands. I started my conversation with Carter as per usual. I let him know the order we would be taking them. Bank, library, and grocery store. I then explained what I needed to do at each one. Deposit money, drop off library book, exchange some groceries and return a DVD at a Redbox. After each stop, Carter chirped from the back seat ticking off the items completed. He loves to go on car rides, he loves to go to the grocery store even more.

Perhaps the outcome came because I didn't put him in the grocery cart like we do every other time. Perhaps it's because we usually return the Redbox DVDs at locations that have an outside kiosk and he can stay in the car, perhaps it was the lady in front of us having difficulty getting her credit card to work when trying to checkout three separate times. This time, it was different for us. When we parked ourselves in line waiting for the woman at the Redbox kiosk to check out her DVDs the machine began to whir and function as all Redbox kiosks do before the DVD is produced in the slot for you to take. The gears and wheels within the sturdy box produced their sound as they readied to do so again. Carter took note of the sound.

If you are familiar with Aspergers Syndrome, these children have heightened senses and to different things. Its been described that each sense is turned up like the volume on a radio. Each person is different in what is painful, terrifying, pleasant, and irritating. We are still discovering what is difficult for Carter to manage and what can literally bring him to his knees or to tears.

Today, at the Harmon's Redbox location we found one of Carter's sounds that induces terror in him. As a mother, watching this happen, completely unaware that it was going to occur is enough to shake any countenance. When Carter is fearful of a sound or panic attack happens over something he is observing, his common reaction is to leap into my arms crying, "Mama, I scared." Like he's just seen a monster or something. He'll bury his head in my chest or my neck trying to cancel out whatever is scaring him. Today he did just that. As I was balancing my sons 35 lb frame, the groceries, my wallet and the DVD I had to put something down. Carter was the one making it difficult to stand upright so I went to put him down. Timing wasn't on my side because at that precise moment the Redbox machine began to whir with movement inside getting ready to deposit the DVD for the woman in front of us. Carter screamed because the sound scared him and clawed at my arms and legs trying to get back into my arms. I stooped to his level to explain to him what was happening in the machine and not to be afraid, Mommy was here and I wouldn't let anything happen to him. He was shaking he was so frightened at this point.  I held him close and said, "It's OK.  Mommy's here." Over and over. This didn't solve his problem. So I carried him the whole time while returning the DVD and letting him cling to me the entire time whispering our mantra to him. He's heard it so many times from me he begins chanting with me, "It OK. Mommy here." In his sweet little voice. When we went to leave he couldn't run fast enough away from the machine. It's moments like these that break my resolve. I save my own personal melt down for when he is in bed, asleep and away from me so I can have my own moment of weakness. My own fears realized. I don't know if there ever was a mother that could handle discovering moments like these that are so routine and so common in our world, so mundane, and find their child shaking in fear looking to you for protection... Who wouldn't start to break their resolve over time?  My sweet tender Carter is worth fighting for and doing everything in my power to help him over come these challenges in his life to exist with them on a daily basis. But to know you now have to work consistently at helping them push past this barrier every time you are confronted with it to the point where they can stifle their fear, suppress their reaction so they don't resort to being a hermit... Its overwhelming on my best days.  I realize why my back is constantly tight with cringing muscles. I'm preparing and expecting the worst always.  I know over the course of the next few weeks Ed an I will take special trips to the store to have Carter visit the Redbox machine, help him touch the screen and select movies, waiting for the machine to push a DVD out. It might take us 3 times or 15 times to get him to the point where he won't be physically cringing at the sounds and be able to pass by the machine with ease. And it's worth it. To help him feel more comfortable in this world. But this is where I get down. This is where I feel the impossibly long hurdle I have to jump. Because its not just this one instance, it's hundreds of things that we are working with him to acclimatize him to his world around him. And there will be hundreds more. I would love to not have to work so hard with my son to help him go through the grocery store without being afraid, or play with Lincoln's toys without him hiding in the kitchen because a squeaky toy is too scary to be near. I would love to go to a play date with 3 other children and not have him spend 1/2 of the play date laying in my lap overwhelmed and fearful of having too many kids in the room.

On the opposite spectrum, about a week ago, Carter shattered one of his fears. When we moved back to Utah in October 2010, I flew home with Carter while Ed, my mother-in-law, my father and my baby sister moved all of our belongings back. For the flight I had purchased a squeaky monkey toy that when you squeeze him the monkey squeals. He loved it, it worked for the time. Long ago we packed that toy away. Until Lincoln was born. Then we pulled out all the baby toys out. Behold, Lincoln found the monkey. One squeeze of that monkey sent Carter running into the kitchen crying for the monkey to be, "All done!" I asked him to come to me and he picked it up by the tiny tag at the bottom and threw it into Lincoln's toy box. We danced around this game of trying to get him to handle the monkey for months. Finally 2 weeks ago, I asked Carter to squeeze the monkey really hard to try to break it. (It won't break, the thing is indestructible. ) He tried it. His squeeze was hard enough that a quick squeak was all it gave. Carter felt power over the squeak. He did it again, and again. After a week of this, he started to bounce the monkey on his leg, letting off small loud squeaks. Slowly we were able to help him move past his fear and learn to understand the toy, that it was more than just it's squeak. He now will play with the monkey willingly. One down.

I tell you this to understand that even despite my down, sad and frustrated days, there are break through moments and I see how much impact as parents we can make on these children's lives. On his own, Carter might be able to overcome some of these issues, but together we are able to teach him to understand the parts of the world that are scary, overwhelming and anxiety stricken. Whether you have a neuro typical child or you have a child with cerebral palsy, our job as parents is to guide, teach and give these children the best chance at life we can.

I am not too proud to admit I cry about Carter's state of affairs. I cry about his future. I cry that I feel this challenge is too big for me. That I won't make it and somehow I am going to fail my boy who looks to me for so much guidance and peace over things he doesn't understand   This stuff I probably don't tell you. (Unless you are Ed, he is my best friend and I will always tell all my deepest, darkest thoughts.) But what I will tell you today is there are amazing triumphs that come with my Carter. For every huge obstacle, I find an equally huge strength. I find a kindness that  supersedes all others. Did you know that Carter has one of the sharpest memories I've ever seen? I have a partial photographic memory. Carter's balks at my poor effort. Did you know that Carter can recite whole books to me? He also has memorized 30 of the 50 states and knows where all of them belong. He has started learning the capitals of the states as well. This happened in just one week. He can complete his map puzzle in 3 minutes. Did you know that he can read? He has the most incredible preschool teacher that simply adores him and says every time I speak to her, "Students like Carter are why you choose to go into the teaching profession." Wow. What do you say to something like that?? Did you know that Carter instinctively came with a deep and protecting love for Lincoln? He can recall full conversations we had weeks and months ago. And will recite them to his favorite audience: the peep hole in our front door and the red light that blinks off of our security system monitor.

There is an incredible amount of beauty, love, and small gifts of special people placed into your life when you are faced with raising a child with an entirely different mapping of their brain. Indeed, I am grateful for this. I am grateful for the kind people that don't stare at my child as if there is something odd with him, instead at how smart, bright smiled and happy he is. I am constantly reminded there is a million levels of good in this world, not just all the bad you see on the news.


Dan and Liz said...

I admire you for being so honest and putting your feelings out there. I can only imagine what it is like, you know this...and you also know I admire how strong you and Ed are as these boys parents. Love you guys! (and can't wait to play again soon)

mommaquincy said...

You are the one Heavenly Father chose to mother Carter for a reason! You amaze me! I must mention that the aspberger adult I know is doing very well.

Jullee said...

I only spent a little time with Carter when we went to the McDonalds so long ago. He is a sweet boy and is lucky to have you as his Mom. I can only imagine the difficult times. But I can tell that you are stronger than you think. I have watched my sister-in-law over the past 9 years as she has worked with her autistic son. It amazes me how much they have both grown and adapted over the years. It's amazing what can happen over time.