Faith In Humanity

While I've been keeping quiet in the blog circle, I continually make notes about what I will write about when I can sit down at my computer and relax. Though I haven't posted, I have a nice little backlog of posts waiting to be tweaked and posted. This evening when I logged in, I reviewed my drafts. This title, "Faith In Humanity" was empty with just the title in it's place. No start, no ending.

In the past two days, the American people have been shocked and in awe of the horrible tragedy in Connecticut which took the lives of 29 people. Each time I saw a new post, or news blog or story, I cried for their loss and selfishly thought it could have just as easily been any of my 3 beautiful children who are all in the age range of those who lost their lives. My heart broke many times for children I probably never would have met and for their parents who's heart are breaking even more than I can imagine.

When I woke up this morning, I completed my typical Saturday morning routine. Instead of reading the newspaper, I get on the blogs to get my morning news. The first thing I saw was accusations of Friday's shooter being diagnosed on the Autism Spectrum. With a deep sigh, I continued to read article after article, drilling in the horrible event, watching many try to figure out who or what to blame. Today, it seemed to be ASD.

On another blog, I saw a comment in response to a statement from the Autism Society of America. ASA's statement that read:

"There is absolutely no evidence or any reliable research that suggests a linkage between autism and planned violence".

Autism Speaks made a similar statement earlier in the day. Though the comment I read was from a woman who had close ties with the Autism community and experience with those diagnosed with Asperger's. In a nutshell, her comment disagreed with the ASA's statement saying they could be more prone to violence because they are aware they are different and desire strong human interactions and relationships. This, my loyal blog followers, is the reason ASA, Autism Speaks, and all affected must continue to educate the world. Apparently, even those who have had previous experiences, have become blind to the fact that Autism is a spectrum and no two people, typically developing or not, are alike.

It is infuriating to know that there are those in our culture that just don't get it. They have an experience, good or bad, and close their mind to other possibilities and scenarios. Is a child or adult with Autism possible of making an elaborate plan to hurt others and able to follow through with that plan? Yes. Is a typically developing child or adult capable of doing the same? Yes. Neither is more prone to than another. God help us if 1 out of 88 children are prone to tendencies of violence.

When people are scared and are desperate to seek an answer to make something that doesn't have an explanation make even a little bit of sense, it is all to easy to point the finger. If we are not careful as a society, we will soon be in the midst of another witch hunt, looking for the common denominator to create our own answers when they can't be found any other way. We've done it before-- it could happen again. We've had separate bathrooms because of the color of one's skin, we've made it illegal for two people to show their love and commitment to one another, we've shunned children and adults because of a disease we didn't understand and now, we watch the media make assumptions when they see a common thread in very different cases brought to us by their reliable, investigative assumptions.

Are you afraid of my child? Do you think if he is not given the attention and social interaction he is craving he will become violent towards you or others? If that's your opinion, then my suggestion to you is to go out of your way to make sure you aren't one pointing the finger at him, whispering behind his back or refraining from giving him the society and interaction he desires, that, in your opinion, will cause this reaction. Be part of the solution in your assumptions and not the gasoline on the fire that makes it worse.

I've been told I tend to have a little more faith in humanity than humanity deserves. My hope and prayer is that, while we all need a time and a place to air our frustrations and concerns, that we all come back to the center with more faith than we started with.

Prayers continue to for the victims in Newtown Connecticut and for those all around the world that have been affected by acts of violence.

Photos by Tao of Kathryn

I've been behind the camera again! Here are some of my latest photos... 

That's my Ryen :) 

Trynity being ornery and cute as ever!

My babies

Ryen looking very suspicious!

Kharter and my nephew Jacob

The crew... my babies and my nephews

My nephew Dalton with Ryen

My nephews Dalton, Jacob and Caleb

Garrett, an inspiring young man... diagnosed with Asperger's at age 11... 3.9 GPA and college bound!

Garrett

Garrett and his little sister Darcy

Matthew

Matthew

Grating qualities...

I've discussed them before, the days I believe things just culminate and finally reach the peak of what Ryen can handle. The days he breaks down into tears for no immediate reason. We all have days like today was for him.

Sitting in the living room, I heard a cry from the kids playroom. I waited just a minute to not disturb him if he was playing a game or just trying to have fun. I heard the cry again. Tim asked Kharter to check on him. He came back in and said he was lying on the floor and he was "fake crying". Ryen does pretend to cry from time to time. It's usually if we tell him "no" about something. He'll cover his face with his hands, cry, then peak through his fingers to see if we're watching. If we are, he immediately looks back down and "cries" even louder.

Today, he wasn't faking it. I walked into the room to check on him. I found him lying on the couch pillows on the floor. Tears rolling down his face. I grabbed a free pillow and lied down next to him. I kept my hands to myself though I wanted to grab him and squeeze a big bear hug. I wanted to take away whatever was bothering him though I didn't know what was wrong. So, there I lied, quietly.

At one point, I tried to rub his back hoping the deep pressure would help relieve some of his stress. It wasn't what he needed today. Again, I waited quietly. I thought about many things that I've read over the past couple days. One thing in particular was a review of the movie Extremely Loud and Incredibly Close. David Germain, a movie review critic with the Associated Press wrote,

"Newcomer Thomas Horn, the 13-year-old star who was cast after the filmmakers saw him on a "Jeopardy!" kids episode, is a mixed bag, holding his own among the adult actors but, through no fault of his own, forced to behave with excessive shrillness much of the time. 

That's because his character, Oskar Schell, may or may not have Asperger's syndrome, a mild form of autism (his medical tests, we're told, were inconclusive). You make allowances in life for people you encounter with autism but spending two hours with a fictional character possessing autistic qualities can be grating."

This review angered me. I try every day (to speak in terms Mr. Germain may understand) to make allowances for ignorant, inconsiderate people who will never understand what it's like to have a challenge to overcome. I was appalled to think he could be so crude in his review. Mr. Germain didn't have to like the movie. And he didn't have to write a good review because the lead character was implied to have a disability. No, he didn't. But, what Mr. Germain failed to do as a responsible writer for one of the most well know news sources, was to be sensitive to the 1 out of 70 people diagnosed with the implied disability. I am appalled to know the AP would allow the review to be published for millions of their readers, no doubt many affected by the same disability, to read.

As advocates for our children, grandchildren, nieces, nephews, neighbors, friends, friends of friends, and the complete stranger down the street whose child was diagnosed with ASD, we work hard to make strides in awareness, acceptance, equal rights and medical research and therapy. With all of the hard work we put into it, seemingly simple sentences like this one, make it seem as if we have only been spinning our wheels. I do hope the young actor is proud to have had this role. And, maybe even pleased his performance was so well that he was able to make people like Mr. Germain uncomfortable for two hours. There are days I wish I could do the same. 

I didn't leave Ryen's side. I stayed there and waited, trying not to cry myself, until I could discover the answer. The answer of what I can do to help. 

I laid my hand on his shoulder, once again, hoping this time it would do the trick. He didn't push me away this time. I whispered into his ear and spoke to him as if he were an adult and could understand everything I was saying, knowing he didn't have the same reading experiences I have recently, I said,

"Ryen, some day, you will show them all how smart you are. I know it already. And you've taught me more than anyone, who has ever existed, could. I know you're frustrated and I know you wish you could tell them how you feel and what you are thinking. And, I promise, someday, you will. I promise."

Saying it more for myself, I was surprised when he rolled over to his back and looked at me. Red-face and tears still dripping, he looked me in the eyes. I had managed to not tear up until this moment. It was the moment I saw him tell me with his eyes, "I understand you."

He sat up on the stack of pillows and looked up at Kung Fu Panda 2 that was playing on the screen. He then said, echolalic-like, "I know. I know. (...) I know. I know." He grabbed my hand and put it to his belly; his motion to ask me to tickle him. I did and we both laughed with relief.

He took a deep breath as I quickly grabbed my phone and snapped a picture so I can remember the exact moment. The moment I believe he was thinking how much he wishes everyone else know what I do. And what I know is, he understands.

My Ryen.

What's for dinner?

I must warn you now, this blog is not for the faint at heart or those with weak stomachs... Beyond this point, there is no turning back...

It was a normal day in December in Ohio. The air was brisk and the grass was green. What made it special was it was also the day of my nephews 12th birthday. My mother took the kids to my hometown for the skating party that we unfortunately couldn't make it to because of work schedules. The kids got to spend the day with their cousins and Tim and I had an evening alone. When we both arrived home we sat on the couch in silence. The sound was eerie and unfamiliar. It was quiet, disturbing even. We stayed home a little while longer then decided to head out to dinner to our new, somewhat favorite mexican restaurant (favorite only because of it's close proximity to our home and the halfway decent food).

We had laughed, made silly faces at each other, finalized our plans for the New Year, had a drink and ate some good food. It was a nice evening yet, as most evenings do, it had to come to an end. We headed home to prepare for the arrival of our children and prep for the next day. The incredibly large Sangarita took it's toll on me and threw me into a slightly tipsy mode. We laughed all the way home on the half a mile drive and walked into the house ready to locate and iron clothes for the five of us for the next day.

Over the previous two weeks, one or more of us in the household have been ill. Stuffy noses, fever, coughs, aches... nothing extremely major, at least the majority of the time. After all, it is Ohio and it's been an interesting winter-- as always. As Tim walked downstairs to start a load of laundry, I heard him ask, "What is that smell?!"

"Hmmm", I thought, "I have no idea. I haven't been downstairs in a couple weeks." (Refer to How to Train Your Husband for tips on never doing laundry again). I replied with, "I have no idea but knowing our luck it's not roses."

I walk to the doorway to listen and offer suggestions. What comes next is a sound of terror. The sound of my-night-is-about-to-effectively-be-ruined. The sound of "Oh my God" coming from Tim's lips. What follows almost instantly was the smell to which he earlier referred. It was the smell of a broken deep freezer. The smell of disaster.

I immediately walked downstairs to help. No getting out of this one unfortunately, even after a Sangarita. He runs past me, up the stairs, in a dash like no other. Once downstairs, I knew exactly where he was going in such a hurry. I followed in the same expedited manner. I made it to the kitchen sink.

We composed ourselves and walked outside to the garage. "Ah! Fresh air!" I thought. Trying to figure out what to do, we decided the only thing we could do is to carry the freezer up the stairs and to the outside for the deep cleaning it needed. After a few moments, we ventured back down together, holding our shirts across our faces, trying to breathe only from our mouths. It was overwhelming. At least we had trash bags with us this time. We didn't bother to run back upstairs. We cleaned out all that we could, including the 22 pound turkey that was, what we guess, the majority of the culprit. We attempted to lift the freezer without opening the door again. We tried and failed several times. In the end, Tim, with all of his might, picked up the 10 cubic feet freezer alone, slid it up the stairs. Almost to the top, he called out for help. I struggled to my feet where I was in the hallway as I continued to get sick on the floor. One more thing to clean up. Did you know that a Bilibo can also be used as a bucket?

I managed to help him get the freezer to the porch just before we both got sick in our flower bed. I just kept thinking to myself, "What must the neighbors think?" I ran inside and finished saying goodbye to dinner as Tim finished saying goodbye to his in the flower bed. When I walked back out, I saw my mother had arrived with the children. She looked awful, in pain and weak as she attempted to coax the children from the car. I walked over to help. Ryen was having a meltdown. He was sweaty and obviously felt just as bad as she did. Trynity didn't want to move either. I received cooperation only from Kharter who told me he had a lot of fun skating with his cousins.

We got into the house. The freezer stayed sitting on the front porch as we opened every window and door in the house to get rid of the awful stench. After near constant gagging, we were able to get the kids settled into their beds. At least it hadn't carried too far into the second floor and Febreeze was able to make it tolerable for bedtime. The kids felt awful. I felt awful. Tim and Mom felt awful. What started as a fun evening for the kids with their cousins, and a quiet evening for us, quickly had turned into one of the worst hours I can remember. It wasn't over.

Tim and I continued with bleach and a water hose to clean out the mess that sat on our front porch. We decided that there was no strength left to carry it down stairs or even to the garage. It had found it's home on our porch for at least the next 18 hours. I wondered if someone would take it. I didn't care.

At the end of the clean up I checked on my mother to see how she was doing. It didn't look so great. I decided there was no physical way for her to stay with the kids the next day so I sent my boss a text to fill her in, albeit with fewer details, and let her know I would not be making it in the following day. I took a few minutes to myself before crawling up the stairs and into bed.

I hear footsteps in the hallway. It was Kharter. "Mom, I threw up." Great.

Comforting him as I walked upstairs to clean up the new mess, I feared it would end with waking Ryen who had just recently fallen into a peaceful, and hopefully less painful, sleep. I walked to his bed to tear off the sheets and saw nothing. "Kharter, where did you get sick?" I asked expecting to find it wrapped up in his comforter. He pointed to the corner. The corner two feet from his bed. The corner that holds the second-story heater vent. The corner in which he got sick. Great.

I got him a glass of water and tucked him into bed. As I reached into the vent, I looked up and said, "I see you had McDonald's for dinner tonight."

Real boy?

Over the past few weeks, Ryen has chosen to watch Pinocchio about a million times. Normally, I don't think much about the movie choices of the kids. As long as they are appropriate for children, I usually let them watch whatever they want. Though it's typically background noise as they play, sometimes they sit and watch, act out and laugh at the cartoon characters on screen. Today, as I watched him dance with his arms up as if he were a puppet, mimicking the wooden boy character with strings, something inside twisted around.

Prior to enrolling Ryen in the private autistic school this fall, he had an evaluation with the administrators. When it was finished, one of the evaluators asked if she could call me later to discuss what they observed. She said, "I don't like talking about the kids in front of them as if they are not there. They are smarter than most people think." Of course, I agree. We scheduled a call about an hour later.

I go throughout each day, lately just trying to make it to the end with my sanity, and thinking about all of the things that need to be done. Not just that day, but the next, the one after, and so on, until my list is complete. You know, the never-ending list that seems to just continue to grow instead of get any smaller? I watch the kids as they grow, learn, develop, create and, as always, pray they reach their full potential. I'm known to read further into things than most should and find, either more hope or, bigger things to fear.

As I sit and wonder who Ryen will become as he develops, I know he is smarter than others believe and believe he longs, now and in the future, to be "typical". But, I can't help but wonder if that even really exists. I believe all children, on the spectrum or not, sometimes feel as if they are a puppet. I completely believe most adults feel that way; everyone falling into the same routine each day, looking at the list, trying to fit into the mold that society says we should fit. And, I think, we all want to break from that, to become that "real boy". Though what is real? What is normal?

God created us all to be individually special. We may not like some things about ourselves: our weight, height, hair color. We may not be particularly fond of others' special traits: humor, beliefs, or overall personality... though we are all special in His eyes and exactly "normal" as He created us. There may be days that I too long for Ryen to be a "typically developing" child, to make things a little easier not only on him as he grows and builds relationships, but on us and the family as well. Though there is no doubt that he is without a doubt a wonderfully perfect real boy and exactly who he is supposed to be. I can hardly wait to see all of the magnificent things this real boy will accomplish in the future.

Optimism vs. Reality, which one will win?

I've said this a lot to begin my blogs lately, it's been a while since I've had the opportunity and the brain power to sit down and blog. I miss it. Some days I crave it. Though life has gotten in the way of my time for myself; the time I get to sit down and reflect on my days as a mother, wife, daughter, sister, co-worker and friend. Life has gotten in the way of allowing me to be good at just about all of those things.

Today, when I got home, the weather was nice enough to allow the kids to go outside and play as long as they kept on their coats. As I sat and watched them enjoy the time together, Kharter came up to me and started to discuss Halloween and what costumes they would wear.

He listed about 10 different options but, even without me saying anything, he said he'd wear the same costume he had last year. Such an understanding little boy. Trynity walked up to join the conversation. He asked her what she wanted to be for Halloween. Not really understanding the question, she just smiled and laughed at him. He got more specific and asked if she wanted to be a Princess. She gave her standard response to every question she is asked lately, "No."

Kharter then moved onto Ryen, who was playing in the water table in the corner of the backyard. Trynity ran behind him with the typical little sister run following her big brother. As he walked toward him, he started to ask Ryen the same question. "What do you want to be for Halloween Ryen?" No answer. "Ryen, I asked what you wanted to dress up as." Pause. "Ryen, do you want to dress up as Optimus Prime?"

"Optimus Prime?" Ryen responded.

"Yes, do you want to dress up like him for Halloween?" Kharter returned.

"For Halloween?" Ryen repeated.

Kharter, frustrated, looked up at me and said, "Mom, I know he doesn't understand me." That moment broke my heart.

Blogging regularly, or not, I watch Ryen every day and up until a couple weeks ago, I thought he had made real progress. I still believe he's made progress though have started to doubt myself and whether or not I'm truly in denial. The day we went to review his updated Individual Education Evaluation, my optimism was crushed when we were told Ryen had only made two months progress in the past 12 months time. I truly felt he had made more progress than the results showed. And I may be right though there was nothing I could say that convinced the professionals of that thought.

Trynity is almost exactly two years younger than Ryen. Trynity has recently surpassed Ryen's academic ability. While I'm proud of my daughter and her abilities, the fear of the unknown can't help but creep into the back of my mind. Who will be the next younger person to surpass Ryen? Will it ever stop? Will Ryen be able to lead a 'normal' life? Or will he forever be trapped in a body that can't express all that he wants to express and all that I know, beyond the shadow of a doubt, that he knows?

I see the kids becoming more frustrated at his abilities to relate to them. He's their brother. Shouldn't he want to play the same games? Shouldn't he want to have a conversation with them about their day, their favorite toys, their costumes for Halloween? Kharter just wants his little brother. Trynity just wants her older brother. They love him and miss him though he's right there in front of them.

We believe to have made the decision to enroll Ryen into a private autistic school in the near future. It's a decision we've fought against with the hopes we had the right judgement to understand his abilities and potential given the right circumstances and environment. Every day I fear that we waited too long. That we were in denial of the obvious. But how can I possibly think that? That would be like giving up on our son before he's even had the chance to prove us right or wrong...

As we continue our days as parents, each decision we are faced with seems to be one of the hardest we've ever had to make. The only thing we can do is decide and hope in 10 years there is confirmation we chose the correct path. Parenting is tough and while it hasn't seemed to get much easier, our efforts are rewarded every time we see our children smile. And that is something to look forward to every day.

Heros

His cancer had grown for what his doctors estimated to be 10 to 15 years before signs of something wrong began 3 days after his 40th surprise birthday party. It was July 30, 1994...

We dug out the white sheet that was hung on the front porch of our small town Main Street home 10 years earlier. It read, "Happy 30th Birthday, Steve" in huge red-painted letters. He, just like myself, hated adding more candles to his birthday cake and family and friends loved to remind him each year that there was one more on top. We covered over the "30" with the new "40" that he was and we all managed to keep it a secret until Mom brought him to the church that evening. He was proud of the poorly put-together video of his childhood photos set to the song "You're the Inspiration" by Chicago and "We've Only Just Begun" by the Carpenters. I had spent hours with a video camera I didn't know how to use trying to figure out how to put this together without the technology we have today. He visited with family and friends for the entire evening in the room right off the side of the sanctuary in the small church we attended every Sunday. That evening would end up being the reason I refuse to participate in surprise parties and one of the happiest and strongest memories I have of my father.

***

I was always Daddy's Little Girl. Or maybe better described, Daddy's Little Tom-Boy. I loved cars-- and still do! Something we had in common from the start. I still love to hear stories from my toddler years of me helping him and my grandfather work on the old classics. I wanted to learn everything that I could and didn't mind getting dirty in the process, grabbing a socket wrench and first trying myself. He was always patient with me while I pulled all of my strength together and still couldn't loosen the bolt-- maybe even proud when I'd eat a sandwich not worried that my hands were covered in oil. He'd smile, give it a tug, and let me finish while we both hoped I wouldn't drop what we needed in the engine compartment. When my sister complained slightly about learning how to change a tire on her first car, I dove right in asking questions. Then, I wanted to learn how to change the brakes! Though as much as I love them, I don't think it was the cars that I loved nearly as much as the time I spent with him working on them. 

I was 16 years old and I will never forget the day I was called in to talk to my parents one winter evening. My dad sat on his bed with my mother, looked up at me and broke the news. "The doctors says that one day soon I'll fall asleep and won't wake up." Though I tried to put up a front like any stubborn 16 year old in denial would do, my heart broke 1000 times. I didn't quite believe what I was hearing. 

It was Easter Sunday, April 7, 1996. My mother and I woke up and went to church. When we got home, I went to my room for a bit to try and relax. When I walked out, my mother was in the kitchen. I walked past and into my parents bedroom where my dad was asleep on the hospital bed brought in to make him comfortable. He was breathing a little differently but he was breathing. He seemed peacefully asleep. I wanted to talk to him and say hi but I decided I didn't want to wake him. I sat down next to him and whispered, "I love you." I stood up and gave him a kiss on the forehead and walked into the kitchen to join the rest of my family. 

After about 5 minutes, Mom stood up and said she was going to check on him. I don't know why but I snapped at her and said, "I was just in there. He's fine. He's sleeping." She looked at me and said she was just going to check on him anyway.

It was about two minutes later when she walked back out crying. She looked at us and said, "He's gone."

I didn't know my heart could break any more than it already had. I didn't want to believe she was right and I was afraid to look and confirm it myself. I still don't want to believe that he's gone 15 years later. 

It took a long time for me to begin to accept it. The man I looked up to would never know how things turned out for me. I wrote him a letter after that winter night they broke the news. I tried to tell him all the things I had planned. I would get married some day and have two kids. I would go to school for art. I would make him proud. My plan wasn't perfect and it didn't turn out quite that way-- but I know now he already knew how it would turn out for us. 

My parents had the picture perfect marriage in my eyes. Though I never showed it, as any normal teenager wouldn't, I thought it was cute when he was being playful he'd still smack my mother on the butt when she walked by him. I loved that they snuck in a hug when they thought no one could see them. I loved that they were in love. My father taught me things no one else would have ever been able to teach me. He showed me how a real man treats his wife and his children. They both taught me what love truly looks like after 19 years of marriage. He showed me that even adults have meltdowns and it's okay. And in more ways than the obvious and as much as it hurts inside to know it cost him his life, my father saved mine.

A week and a half ago, just before heading out of town with my girl friends for a relaxing ladies weekend, I headed over to OSU for a cat scan and blood work. It was quick and painless and then a group of us met up and headed to the lake. I didn't have to think about the results again until my next appointment in 10 days.

I was a little nervous but had a calm peace about it. I know that I have one of the best doctors in the world for neuroendocrine cancer treatment. I trust her and her staff. I walked in to find they were running on-time. Great! When the doctor came in she talked a little about OSU My Chart and how to see the results of my tests before the visit-- "That will be nice," I thought to myself.

She looked down at her paperwork then looked up to me. I felt a rush of fear hit like someone threw a brick at my head. What is she going to say?

"I'm giving you a clean bill of health today!" She said with a smile. All at once I felt like I was hovering outside of my body. No cancer.

She pulled up the results of the cat scan and reviewed the report with me. She then pulled up the blood work and tumor markers. The levels were no longer elevated and reached the normal range. Perfect! I was reminded that I still need to have testing done every 6 months for the next year at which point I can move to once per year. This will continue for the rest of my life. There is still an 80% chance of reoccurrence for me...

...but today, I breathe easier knowing that cancer won't take me down for at least a little while longer. I can focus on my family and all the other things I need to do in my life that will now be extended because I know what to look for. Because of one man. My father. My hero.

I wish he were still here to see all of the things that we have done. I wish he was here to help me work on my car when it acts up. I wish I could hear him say that he's proud of me. I wish he were there to walk me down the isle and to hold his grandchildren now. But I know had he been given a choice of my sister and me, or him, he would have answered the same way I would answer today if I were given the choice between myself or my children.

I had the strongest man and most amazing hero that will never be written about in a history book tuck me in every night for 15 years and pretend he accidentally left the hall light on because he knew, even then, I was afraid of the dark. And while he's not there to call on days that I know he would have the right answer, I know he's looking down trying to help me find it on my own.

***

Tomorrow, Stephen Alan Cheadle would have been 57 years old. I sure wish I could add another candle to his cake.