The War

The State of John Part Two - The War
Category: Goals, Plans, Hopes

This is part two of my update on the State of John Roedel.

Two or three times a day I am asked how my autistic son is doing. I never know how to answer....

There is a moment every day that I realize that I am still at war. It happens every morning at around 8:15 in the gravel canvased playground at Bain Elementary. This is one of the fronts of the war that causes me the most heartache. My wife and I drop of our Noah off at this playground as he awaits his school day to begin. There is a parade of children everywhere. There are kids running around in a frenzy attempting to expend whatever energy they need to before the school bell rings. After walking him in, sometimes I just hang out for a moment to see how he interacts with the social hurricane that swirls around him. Today the park was especially loud as the sun has made its way back to Wyoming. It was a warm, beautiful morning, that was devoid of our normal wind. This seemed to amp up the grade schoolers as the noise and activity level was high. Noah walked to the center of the playground with his hands in his pockets watching the swirl of colors from the jackets of his peers whip past him. He stood there for a moment looking at all this in a manner I can only say as confused. My heart plummeted. What was he thinking? Was he sad that everyone else seemed to have some buddies and he was alone there in the center of the storm watching the fun pass his by. I thought to myself that we will never win this war. No matter how many battles we win, the war itself is unwinable. Then something happened that ended my brief pity party.

I will get back to that in a moment...

In a brightly lit doctors room in 2003 Autism officially declared war on us. It had captured our son, Noah a year or two earlier but it took us a while to get notice of what had actually been going on. I have written about my experience in that cold medical room in Denver before..probab ly too much. It was my Pearl Harbor. Although the writing was on the wall that the attack was looming I still did not completely expect it. My wife and I had been peacefully docked into the port when the assault began. After Autism's initial blow my wife and I were left in ruins as we sunk into the bay. We were told that Noah would most likely never be able to function on his own. That his entire life would be difficult and that he may not learn how to operate on the most basic of levels. Why us? What did we do to bring this on? We were victims.

The war waged on against us for the next year. We took massive beatings. There was no sleep. No relief from worry. Not to sound so melodramatic but we felt for a time that there was no hope. We were losing the war. That was because we weren't fighting it. Not because we did not care. It was because we did not know where to begin. How do you teach a little boy who cannot understand a word you are saying that you need him to not open the front door and sneak out when our back is turned. There were too many fronts on this war to manage. So every day was all about survival. At the end of the day I considered it a victory if he made it through without hurting himself or having a meltdown someone could hear from Pluto. Those days were few and far between tho. We were losing this war.

Then about a year and a half ago we got angry. It took one more trip to Denver from us to get that way though... We thought he had been making some pretty good small steps in the right direction. We had spent some time and money on some private help thinking that maybe a little bit of therapy would help him out. We started a plan that had Noah in a half day of special pre-school to help him get caught up on whatever cognitive delays he had. We purchased a bunch of special equipment to help him around the home. So we took him back to Denver to the same cold room that we had first got the diagnosis. I was expecting to hear that the war was ending and we were reaching a place where we could start rebuilding the framework of normalcy in our life. As I usually am...I was wrong. The doctors were not nearly as impressed with his progress as we had been. Although I thought he tested pretty good for them they assured me that he had done quite poorly. So poorly in fact that his prognosis was a little worse then it had been the last time we brought him in. They told us that we need to come to the grips that Noah may have to always be considered as Mentally Retarded. As a family we were devastated. On the quiet drive home back to Wyoming I started to think of how bad I felt for Noah that he would never know much of the good things in life. Aside from the cognitive part he was missing out on I was most concerned about his social life. Would he ever connect with other children? Would he have friends? I started to dread imagining how he would have to live his life without being included in other people's lives. He would be the child, alone on the playground his entire life. He would not know what its like to go to prom. He would never drive. He would never live on his own. He would be a prisoner of war for his entire existence. I started to feel like the victim all over again.

That's when the anger began to swell up. In the next day my wife and I began to talk about how we felt. We both agreed that it would be better to be proactive then to sit back and give up. I was mad that they had told us he was more or less doomed. It was in my basement 19 months after Autism declared war on me that I declared war on it! Operation Noah Freedom had begun! I started to research new ideas of how to reach out to Noah. I discovered a battery of vitamins that seemed to be helping some other Autistic kids around the world. It would be an alternative approach. We experimented with his diet. We invested a lot more in individual therapies...to the tune of several hours a week. We put every penny we could ever find in sending him to a wonderful two week camp in Colorado. We began to fight back. We have had many battles. Some we have won...like getting Mr. Noah to eat a more balanced diet and helping him value the importance of sleep. Some we are still fighting....li ke helping him not to get so frustrated. I can say that we have not yet lost a battle since we declared war.

For the past three years the war has rolled on day and night. We are winning. I say that because Noah has begun to emerge from the swamp he was sucked into. He is wonderful. He is as loving as a boy could be. He is gifted on the computer, and he is a terrific artist. It also does his old man proud to discover that he also loves to perform in front of people...actin g..singing..wh atever platform it is he really takes to it. Noah is functioning on his own now. I think in the long run he is going to be OK. Finally we had some sense of hope.

Here is a couple of lessons I have learned since Operation Noah Freedom began...

WE LEAVE NO CHILD BEHIND

We have adopted the same approach that marines did in the Black Hawk Down incident. We will not leave anyone behind the enemy lines. Noah is not the only child we have. Riley is about two years younger then Noah. He has been Noah's best friend, angel, and peer mentor. In a lot of ways they are like twin brothers. Riley has been so patient with his situation. It is not fair to be the brother of a child with special needs. Noah gets alot of our attention. Because Riley is typical he is sometimes seemed to be forgotten. He does not get the special food that is shipped in from Canada. He does not get to go to the special therapy sessions at the YMCA. He is the unsung hero in our war on autism. Which is really sad because we are only winning this war due to the things Riley has done for his older brother. I need to be more patient with him. Sometimes I treat him like he is the older child. Riley is funny. Riley is musical. Riley is brilliantly compassionate. I know that he will always be kind and gentle to people who are a bit different. He is our hero and I promise we won't leave him behind...

IT TAKES A VILLAGE

Not to raise the child...but to support him/her. The only reason we have survived as a married couple over the past few years is because of the support and care we have received from other people. Granted, there are some people in our lives who don't treat us as equals because we have a special needs child...there are many others who have rushed to our rescue. During wartime it is easy to cut yourself off from the outside world and not to let anybody in. I think we tried that approach for a spell and it did not work out so well. Once we started letting people in on what was happening we received thousands of graces. We only found out about this life saving camp Noah attends from a person who had worked there. During a wedding reception she gave us the name of the lady to call and within a day or two Noah was enrolled. (had we not had her as a reference I doubt we would have ever got it that year) There have been people who have sent me books and references in how to best come to understand what autism is. There have been people who have given their time to help watch out children so that me and Jennifer can actually take a few moments for ourselves. There have been people praying for us. There have been people who have never even met our son to take time out of their life to come up with ways we can help him. It is in this acts of kindness I am speechless. I know that God exists...not because of a burning bush...but because of people like that in our life.

This war won't anytime soon. I will not stand on the air craft carrier with a "Mission Accomplished Banner" in the near future. There will be some good days...and some bad ones.

Back to the playground....

As Noah stood there in the eye of the children storm. I felt again hopeless. No matter the gains we had made in some aspects of his life he would always be left out on the playground. Even though he knew his ABC's or he beginning to grasp how to read he would never have friends. For me that would be a more horrible fate. I left the brick wall I was leaning on and started my walk back toward my car when I heard someone shout:

"Hey Noah! We were looking for you!" called a lttiel girl with red hair.

Three little kiddos were now standing next to Noah. His eyes had lit up and they exchanged some sort of dialog that I couldn't quite pick out. Then in a flash they all began run in a pack. He was laughing and waving his arms around freely. He had joined the storm. I was happier then I had been in a long time.

This was a good day