Tuesday, April 2, 2013

Puff the Magic Dragon

When I stated intentionally trying to share my children, I debated not including Micah. The more I think about it, the more I cannot fathom how I could NOT talk about Micah. I realize that who he is no longer progresses and changes now that he is gone. However, he is not somehow "less" than Micah. He will always BE Micah.

When we were working on his adoption, we were told Micah had an IQ of 74. In every IQ test he took, he successfully "lost" 20 or so IQ points. I told the testers it was pointless to test him, because all it did was tell him how to resist and bomb the test worse. One homebound teacher of Micah's said the most profound explanation of his non-compliance I ever heard. She said he had the strongest non-compliance of any child she had worked with, even one with Autism. She wasn't kidding. Micah's resistence to order and rules was legendary.

Of course, we didn't know Micah was Autistic when we adopted him. I knew something was *off* but I knew enough that I knew it was NOT attachment issues. He was not dangerous. I couldn't put my finger on what was so bizarre about this child. Yeah, what did I know? Back then all I knew about Autism was that it took very intensive parenting and I did NOT want to adopt a child with it. Boy was I niave and set to learn a lot.

During Micah's adoption, we had unprecedented access to his fosterhome and to him. We called him every night to talk with him. His foster mother answered any and every question I had. She turned the management of his medical decisions over to me. I did with her what I had done with my other boys. I asked her to tell me about Micah......She didn't understand the question.

What was his favorite color? What was his favorite activity? His favorite food? What did he like to do when he played? How did he play with friends? I wanted to know everything. She knew NOTHING about Micah. He lived in her home for three years and she knew NOTHING about my son. I was stunned. How can a child live in your home for three years and you not know these most basic things about him?

So, in this series about my children, let me introduce you to my Micah-man.

Micah's favorite color was red. His most beloved teacher, Ms. Amy, used to think it was because red is a color that special needs children can easily identify. In fact, after Micah expressed his strong preference for red, it became the favorite color of most of his class. That was not why Micah loved red. Micah loved red because his DADDY drove a red truck. In fact, so strong was Micah's association between red and his beloved daddy that when we bought II's Jeep we deliberately bought a red one. No one knew how to try to tell Micah that his daddy might not drive a red car, so we bought a red one just for Micah.

Micah loved Disney movies. There is no doubt that Disney markets to young children quite well, but those movies were ones that Micah could touch into emotions that he couldn't understand or reach otherwise. Over his years, he progressed from one Disney movie as his obssession to another one. His all time favorite was Cars, but in sequential order he loved them all. His fleece blanket was choosen for his love of Cars. All of my children are given a no-tie fleece blanket that I made them. Micah's was the only one that was a trademarked character. For most of the kids, I choose something that can grow with them. For Micah, I knew he would never truly grow so I gave him his heart. Micah was NEVER without his Cars blanket, except when it was pooped and needed washed. There was at least one hospitalization where I had to make a special trip to the hospital to bring that blanket to him. Micah used to untie a hole into his fleece blanket and sandwich himself inside of it to sleep. I knew there was sensory issues and weight issues. I just kept re-tying it and hoping he didn't destroy it, since I was never sure I could replace it if he destroyed it.

Micah had two dreams in life. He wanted to meet Mickey Mouse and he wanted to be a doctor. Make A Wish helped him fulfill his first dream. He was absolutely in love with Mickey Mouse. That love pre-dated us. He collected Mickey Mouse stuffed animals. His siblings all claimed them when he died, except his big one. I keep the big one in my bedroom and when someone is grieving hard, I loan him out so they can sleep with him and hug Micah through him now. Micah never forgot his trip to meet Mickey Mouse. I was stunned and amazed at Make A Wish and Give Kids the World. They gave Micah something precious and amazing, and they gave his siblings the trip of a lifetime to always remember Micah.

Micah had ecolalia but like everything else about him, it was atypical. He didn't always repeat words but he would ask a question ad naseum to parrot back what he picked up. He had hearing that was superhuman so he would hear something and would ask questions for DAYS after he heard it, which was just rephrasing what he heard. It was so unique that it took the Psychologist who diagnosed him some time to place what it was.

In the end, after he was gone, I realized that Micah fell under what they call savant. He had a vocabulary to rival any of us in the house, and he knew what words meant. He could get himself into trouble faster than ANYONE could get him out of it. Keeping him safe was often exhausting. If he found a way to break his skin, keeping him from pulling things out of his body took layers of socks and duct tape. Evven when he was dying, he would take his needles out of his port and stick them into his stuffed animals. Micah never ever knew how to process this world in a manner that made a lick of sense to US. Micah was Micah. We used to say that all the time. There was no textbook to describe Micah. His Heptalogist said that was becuase they don't make textbooks about Micah, he is too unique to write about. Micah is one of a kind.

It is my deep held theory that Micah was unsafe from very early in his life. I believe his autism was either something he was born with or caused by the years he spent abandoned in the hospital. There is a thing called institutional autism, and I was never certain whether he was truly born with the autism or all those times where his only friend in the world was a janitor forever changed him. What I am certain of, because we recieved the social history at his finalization, was that his birth father used to beat him black and blue. His birthparents had been neglecting his medical needs from the day he was born and the state kept sending nurses into the home to manage his care. The day he was hospitalized the month before he turned three, he showed up covered in bruises. He was Hispanic, it's not easy for him to be covered in bruises, but the report from the doctors was that there was not a spot on his body without some varied degree of bruising healed or fresh upon his admission. The medical neglect his doctors had tried to work with. His abuse they would not turn a blind eye. They contacted the state. I believe that Micah learned in that first home the only way he could be safe was to create chaos. So long as the world was full of chaos, it was hard to focus on attacking Micah when trying to clean up the messes he created at the same time. I think Micah was so non-compliant because he was afraid. He had been abused in ways no child should ever suffer, and he knew so long as he kept people so distracted with things such as flinging poop, they wouldn't get TO him. It is heartbreaking to realize that in the threat of trying to survive, Micah learned the one behavior that made it forever hard to parent and care for him. He was non-complaint and created chaos whereever he went but he never learned he could stop doing it because he was safe. The Psychologist who diagnosed his Autism said that he was profoundly autistic and it was unlikely he would ever unlearn a coping mechanism he learned under that kind of stress and threat. She was right, he never unlearned it.

So, Micah was this amazingly sweet and unique child. He was also a constant bundle of chaos and non-compliance. Parenting Micah required two things. One, you had to never take it personally. Second, you had to be rock wall firm with him. I learned along the way that I had to be firmer with Micah than I ever was with his siblings. Micah saw the world in absolute black and white. If I wasn't firm with him, then he didn't trust the boundaries and would continue to test constantly. If I took his behaviors personally, then his coping mechanisms that compelled him to seek out spaces to insert chaos would propel him into creating more chaos. Parenting Micah was humbling. It required I constantly find those weaknesses, those points where I could lose my temper and learn to suppress those flashpoints. I wasn't perfect. I did lose my temper with him. Sometimes, even the calmest human would lose their temper with a few of his stunts. But, I always picked myself back up and worked harder to dig out all of those imperfections for his sake.

Micah loved people. He didn't know a stranger. I have a million stories I can tell about my son, but his love of people is at the top of his list. Not long after he came home, he was tantruming in a port-a-potty, before we knew that tantruming was Micah's way to communicate ALL strong emotions. His big brother was in there with him and had removed a soggy pull-up in the pouring rain. He was stunned and shocked when two strangers popped the lock on the potty and yanked Micah away from him. Micah didn't understand what a stranger was and willing went with them. The brother thought quickly and made a dash for II to get him. To this day, we have no idea what these people were thinking or where they were going with Micah. They went in the opposite direction of the police at the soccer tournament and they fought II when he stopped them. Ultimately, Daddy sternly told Micah to come and Micah left them for his Daddy. I lived in fear it would happen again after that. Micah literally did not know a stranger, nor understand any semblance of stranger danger.

I tried to tell Micah not to talk to or go with strangers. It was pointless. Finally, I thought I had a stroke of genius. I told Micah he was not allowed to talk to anyone he did not already know the name of. I thought I had solved this danger. I'll be darned if that booger didn't go to the very next soccer game, walk up to the first stranger he saw, stuck his hand out and said, "Hi. I'm Micah. What's your name?" As I said, I recognize now that Micah was a savant. He was very smart, far too smart for his own good or safety. He just had NO clue how to survive in the world we mere humans live in. He was Micah. His favorite song was Puff. In the final days of his life, the final verse becames nearly unbearable for us to sing, but we sang it for him anyway. He was Micah.

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