Autism Wins.

It's 7 pm on a school night and I've decided to see how far I can take this potty training thing. So, here goes. I take the diaper off; I put the big boy underwear on; I give him a juice box. Now, we wait. I set a timer for fifteen minutes on my phone. Two rounds and no pee pee. Ten minutes into the third round and he's dry. Excellent. Minute thirteen, I check him and he's gone ALL over the couch. Really? Good grief. I know it's not his fault. I know he can't help it. That day I had failed. So, I put a diaper on him and give him a big kiss, fighting tears. Big, fat, hot tears. Tears of frustration not at my  boy but at "Autism." I tuck him into bed and then I let go. Scrubbing the couch and floor and rug and any other surface that I deemed necessary for my wrath with disinfectant and tears. Autism wins.

Sometimes, Autism wins. And it's not pretty. It doesn't come in a beautiful package to unwrap. It's raw and ugly. Short fuses, repetition, and uncertainty all play a role in our so called "defeats." I see his sweet little face making connections and neurons firing and I sit and wonder what is going on in his head. What on Earth is he thinking? I see the faces he makes when I put new food in front of him. And I can't help but wonder what offends him. How can I make it better? How can I help my little boy? All these different elements take its toll on us and makes us who we are at the same time. I have two choices: to let it defeat me or let it teach me. Now, I am no expert on Autism. But, I will say that I am an expert on Noah's Autism.

Noah 101:
Blinking eyes means NO. Blinking eyes with mouth open means an emphatic NO.
Square plates are strictly prohibited.
Ruffles are to be eaten out of the bag only. Not on plates, in bags, or in bowls.
The Big Bang Theory theme song is not to be fast forwarded through or there will be hell to pay.
Kevin is to perform all morning rituals and Mama is to perform all evening rituals.
Red tops (Chef Boyardee) is to be eaten out of teal plastic bowls only.
Grits are only eaten at Nanny and PawPaw's.
Chocolate milk is to be consumed only at Mama and Kevin's. The only acceptable brand is Purity.
During a meltdown, 1001 Surprise Eggs on YouTube is the only acceptable way to calm down.
Fruit snacks must be on hand AT ALL TIMES. No exceptions.
Sitting in the bathtub while being washed is prohibited.
Using the shower head in the bathtub will be met with blood curdling screams.
The seating arrangement must be strictly adhered to at family meals.
Undressing must be done from the head down.
Getting dressed must be performed in this order: underwear, socks, pants, shirt
When visiting Walmart, it is customary to obtain a container of mini oreos.
Uncrustables must be cut into eight equal pieces resembling a pizza.
All items must pass a smell test.

Just to name a few.

On the flip side, there is a side to Noah that I am in awe of on a daily basis. He loves hugs and closeness. Holding hands is a must. We don't have to adhere to a strict schedule of ritual and routine. While he does need things a certain way in a certain order, he has never been a slave to the clock. We eat at different times and bathe at different times and he's happy with that. As long as everything is in the correct sequence then, it's all good. He is such a people pleaser. Always trying things to make people laugh and cheer. And I am proud to report we are well on track with potty training. No more diapers. In underwear all the time now! He is very proud of himself.

He is the kindest soul I've ever been around. Before my Granddaddy passed away about a month ago, we piled in the car for a day trip to see him. Weak and feeble in a hospital bed in the living room we each took our turn saying goodbye before going home. Noah had only been around him a few times, but he always took to him. That's the part of the Autism that I'm thankful for. He can read people. And my sweet Granddaddy was a wonderful, pure soul. A little piece of him is with Noah. I took him over to his bedside and I had decided that I was not going to push Noah to hug him or climb up on the bed because I didn't want my Granddaddy's last memory of Noah to be one where he's screaming and squirming to get away. I said, “Noah let's tell him bye-bye and we'll see him again one day after awhile.” My granddaddy stuck his hand out and Noah so calmly laid his head right in his hand. I will carry that memory with me for as long as I live. Autism did not win that day. And I am so thankful I could be apart of such a pure moment between two very special souls.

To Noah on your Fifth Birthday

My Dearest Noah,

Today you are five years old. And I cannot believe it. My darling boy, oh the dreams and ambitions I have for you. To be happy first and foremost, but to have a purpose. You've done so much already, more than I could have ever imagined in my wildest dreams. I truly believe you were sent to this Earth to make people happy. You are kind, sweet and so intuitive. How can this much kindness be in such a young heart!? You, my sweet, got that from your Nanny. So patient and endearing, I am amazed at how much you've taught me. I knew I'd love you but I was never sure how much. To the moon and back just doesn't seem to be enough. It far surpasses that particular distance...my love for you is immeasurable. 

You, in your short five years, have touched the lives of so many. And I can say with pure certainty that you will continue to touch many more lives. We are all better for knowing you. You battle the unknown every day and you are ALWAYS smiling. I knew when I held that pregnancy test all those years ago that things would be different. But, how could I have known what was in store for us? I have definitely learned not to judge a book by its cover. And, that's a hard learned lessen that no one could have better taught me. 

These last five years have been the greatest joy of my life. And I can only imagine what joy is in store for us. You have this uncanny ability to turn a bad day into a good one! How do you do that? That infectious smile and innocent giggle make everything better. You know just what to do to bring a smile to anyone's face. And you brighten every room just by being present. The world is definitely a better place with you in it! 

In addition to all the wonderful gifts I know you'll receive today, here are some promises that I'm making to you. Each of these I've thought long and hard about. I want to do better because you make me better. 

I promise to soak up the moments. Bath time. Bed time. Hugs and kisses and scraped knees. 

I promise to wipe your tears when you're upset. 

I promise to hold your hand when you need support. 

I promise to be your nurse when you're sick.

I promise to fight for you until you can fight for yourself and even then I'll still keep fighting. 

I promise to hug you tight when you're under stimulated. 

I promise to be your Wal-Mart date whenever necessary.

I promise to never let anyone underestimate your abilities. 

I promise to show people your true potential. 

I promise to pick you up when you fall down. 

And I promise to love you for the rest of my life...

So from the bottom of heart, happy, happy birthday sweet Noah. I am definitely better knowing you...

Love,
Mama

Promises.

Before my husband was my husband, my son was diagnosed with Autism. I'm sure all of you reading this already know that. I do not hide it and I do not mask it. We'd only been dating for about seven months. Well "Diagnosis Day" as it's now known (8/5/13), I gave him an out. I said that I couldn't promise him everything would be okay. I couldn't promise that Noah would grow up and function on his own and move out and get a job. But I definitely couldn't promise that he wouldn't. Not my finest moment, I admit. He said and I quote, "I'm not going anywhere." What a testament to how a real man should act.


What did I do to deserve this man? This man that has promised to stand beside me and help mold this tiny little guy into the best big guy he can be. No motives. No hidden agendas. Just love. You should see the way that little guy looks at him. Joy. The word pure comes to mind. Noah's feelings are pure. No drama. No manipulation. Just pure LOVE.


It seems to me with Autism it's not about the promises you CAN make but about the promises you CAN'T make. I can't promise that Noah will ever talk. But, I dang sure can't promise that he'll be mute forever, either. I also can't promise that he'll ever use the potty. But, I dang sure can't promise he'll wear a diaper forever, either. Those dang "can't" promises give me hope. A hope that envelopes me and one that I can cling onto and hold forever.


I was driving home from work a few weeks ago and drove past King's Daughters' School for Autism and all these thoughts spiraled from rational to irrational so quickly. Will Noah eventually need to be institutionalized? Then, all those thoughts led me to a dark place in my subconscious. And before I knew it, I was a blubbering mess traveling down Trotwood. Lord have mercy, where did this come from?! How did I get here? Why on Earth did I let this little thing upset me so much? I am human. I am a worrier. It's what I do. I'm also a mama. And from my experience as a mama, the worrying and spiraling out of control comes from a place of love.


Here's why I'm insane. Noah lives in a world of awe and tranquility. A place where the only injustice is running out of fruit snacks and macaroni and cheese. A place with no traffic and no screaming lunatics in a rush to get to their next destination to meet their next deadline. He is oblivious to ugly looks and judgmental staring. Which by the way, drives me to a new place of rage and insanity. I'm thrilled your prodigy of a child is far exceeding your expectations as a parent. Really I am. I'm in awe of your abilities. But, that in no way gives anyone the right to look at my almost five year old that's still in diapers like I'm the scum of the Earth. Oh hey look at her! She's too lazy to potty train her kid. Most days I can shake it off with no problem and move on knowing there is more to the story. But, alas, there are days I feel I'm going to explode. Like maybe if the Earth swallowed me that no one would notice I was gone. I know that is completely untrue. There's a little boy that would miss me. And for that I am thankful.


I'm so worried about Noah fitting in and being liked that I forget that he honestly is unaware of all of it. He has his circle of safety and as long as he has the people in that circle than he's content. A social worker I used to work with caught me crying shortly after he was diagnosed and she read me a list of things that pertained to people with Autism.
1. Rarely lie
2. Live in the moment
3. Rarely judge
4. Passionate
5. Not tied to social expectations
6. Terrific memories
7. Less materialistic
8. Play fewer head games
9. Fewer hidden agendas
10. People with Autism open new doors for neuro-typical people
http://autism.about.com/od/inspirationideas/tp/besttraits.htm


Noah has no idea he's considered "different." The ones that love Noah most know he's just Noah. He's taught me more in his almost five years than I think anyone will ever teach me. I wish we could all live like Noah. It's the best kind of don't care attitude. Oblivious to the bad, in tune with the good. All with his own set of challenges and victories. I read a quote once that said, "Autism isn't a journey I planned, but I sure do love my tour guide." I never thought I'd love another human being as effortlessly as I do Noah. And I promise everyone reading this, and everyone not reading this that until I take my last breath, I'll be his soldier. Tirelessly fighting for him until I can no longer breathe.

The Moment I Knew.

There's a quote in one of my clinic manager's offices that reads, “Sometimes your life is defined by a single moment. Let it be today.” I know many people will choose the day they were married or the day a child was born and while those days hold a place in my heart so special that anything else just seems insignificant. But a DEFINING moment. A moment that decides your fate as a human being. Well, that moment I remember perfectly...

I was more nervous than the day I got married (either time) or when I actually gave birth to Noah. More anxious. More anything really. Emotions were high and it was almost like a dream. An alternate reality really. But anyway, on with the moment. August 5, 2012. It was hot. And I don't mean "wow, I'm sweating." I mean wet shirt, hair up, LORD HAVE MERCY hot. August in Tennessee, there's really nothing but hot. Noah was less than three weeks shy of three years old. He had a way of making all the sadness go away, like air draining from a balloon. Or bath water swirling down the drain. Just a tiny, peaceful soul. No worries. No cares. Just blue eyes. He has the kind of blue eyes you can get lost staring into...Kind eyes, thoughtful eyes. And sometimes, for reasons I'm still not sure of, scared eyes. Unknowing eyes. You can see he's trying so hard to figure out a task you or I don't even have to think twice about. Those days I give extra hugs and extra kisses and extra fruit snacks.

I had asked my dad to come along with me because he'd been witness to him while I was working and he knew him well. All his quirks, all his routines, and all his habits. The people with TEIS told us that we'd be put on a waiting list to be evaluated but I really didn't think too much about it. All part of the "if I ignore it, it will go away" part of me. One of my biggest shortcomings. I do it with many, many other things. Maybe one day I'll get a handle on it, or maybe I'll just ignore that, too. The lady in charge called me and we made an appointment and she said there was a study involving the enviornment and developmental delays and of course I agreed. We made the long drive to the Vanderbilt Kennedy Center to meet with the ladies of TRIAD (The Treatment and Research Institute for Autism Spectrum Disorders). This was his official screening.

At the the time, our family was going through a rough time. Rough was putting it mildly. Rough was playing with puppies compared to those several months. Everything Noah knew was crumbling, so I knew it had to handled with grace and great care. My dad was nervous. I am much like my father when I'm nervous. Talking about nothing. That's all I can do. It was August, so, almost college football time and baseball in full swing. "How you think the Dawgs will be this season?" "Did the Braves play today?" "Is it supposed to cool down any, ever?" "What are we gonna do for Noah's birthday this year?"

We arrive almost 45 min early. The sweet ladies told us it would take about 3-4 hours. So we waited and Noah played with a few toys in the waiting room. They call us back. We go into this room with a one way mirror. Like in the police movies. And she explains to us that she's going to do some guided play with him and we can watch where he cannot see us. While he was playing we answered a lengthy questionnaire and watched some videos showing how children with Autism play and how neuro-typical children play. It was like watching Noah in those videos. After all that was over, they interviewed us for the study. They said we were done and she would gather her findings and we could come back after we ate some lunch. There was a Dunkin Donuts downstairs so we sat there for almost an eternity. My dad asked me what I thought. I couldn't formulate words. Just trying to keep from crying...

Did I ignore all the signs? Was I that stupid? Did I do this? No, no and no. Looking back on that eternal lunch break, I realize now I was scared to death. How do you raise a neuro-typical child, much less an Autistic one...We stewed a bit longer and mustered all our courage and walked back upstairs.

We went back to that room with the one way mirror and we got settled and she began talking and it was like a scene from a movie. She's lecturing on how my child is and she said she definitely believed he was somewhere on the spectrum and I spaced. Just holding back any emotion so she didn't think I was an asshole who thought I had a defective child. Knowing what I know now, it's ok to be sad about it. It's ok to be fearful of an unknown future. Will he go to a regular kindergarten class? Will he ever speak? Will my son ever tell me he loves me? All those questions engulfed me. All the "will he evers" absolutely terrified me to the core.

Toward the end, Noah started melting down (a term commonly known in the Autism universe) and at the time I really didn't know what it meant. I'd learn. Oh, I'd learn quick, too. We left, I must have sprinted to the car. And then it happened. All the tears I had ever made in my entire life fell from my eyes. I cried a river. A literal river. I cried for me. I cried for my dad and I sobbed for my Noah. I drove the whole way home just broken-hearted. And I sat on that broken heart for five days.

It took me five days to realize this isn't the end. It's a wonderful journey that I was chosen for. All the heartache didn't matter. All the tears I cried were silly. God had chosen me to be this kind soul's mother. That was my DEFINING MOMENT. The exact moment I made a promise to myself and to Noah that I would not let this become a pitiful story. I was determined to learn all I could learn and do all I could do to help my Noah blossom into the best little boy that he could. We've come a long way. Said a few words. Signed a few signs. And followed many directions. He understands more and more everyday. He is the absolute best part of me and the greatest joy of my life is getting to be apart of his journey.

That day is just a memory now. It doesn't haunt me like I thought it would. It was our turning point. A life less ordinary...