Thursday, April 4, 2013

The joker

Just a tad older than Ch is C. I really never intended to artificially twin this child. However, when we started our second adoption, we found a little boy listed that most families are scared to adopt because of the expenses of his medicine. We couldn't see saying no to this child merely because he was only five months younger than his brother. So, we proceeded with caution and carefully remembering to meet the needs of both boys.

C is my most challenging child to parent beyond Micah. When C was born, he had the most severe colic I had ever seen. He screamed from sun-up until sun-down until he was six months old. For another two weeks he whimpered before he finally stopped. It was only later that I realized this poor baby had reflux at a time when it was just starting to be recognized and treatment was contraversial. I recall more than one conversation with his doctor where I was in absolute tears and begging him to help this baby, that clearly this child was in PAIN, and being told that I would not like the side effects of the medications and thus we would levae it alone for him to outgrow. If I regret one thing about how I have mothered my children, it is that it took me six months to fire that doctor and find a better one. By the time his new doctor saw him, he was sympathetic and understanding, ready to treat but we were in watch mode because the symptoms had subsided.

If I knew back then what I know now, I would have recognized that this child had sensory issues. I would have recognized that a child who could follow three and four step commands by 11 months and could kiss out the syllables of the words he could not say was not merely lagging in his development but unique and different. I would have recognized that a baby who was offended by having his senses stimulated strongly had sensory aversion. A toddler and preschooler who would melt down into a puddle of tears because his sandwich was altere slightly in the making was not merely typical obssessive toddlerhood. A child who desperately begged to learn to ready by 3.5 and who forced his path through eight reading programs by age six, failing every single one of them despite his desperate desire to grasp it was not merely a reluctant reader.

We call C scary-smart. That is the only conclusion you can reach about a child who mastered a high school level of science understanding before finishing elementary school, how posses a mid-high school level of math skills now, who has reached collegiate level in most other subjects. Yet, he requires reading assistance for all things, and can still meltdown if he is too overstimulated or too frustrated. He can spend hours on NASA's sight, or his new passion, NOVA. Yet, he requires a dry erase marker for three simple checks every day to remind him when he has eaten meals during the day.

This child has taught himself two computer language programs at this point. Once the world of reading was opened by diagnosis of dsylexia, he recieved a Kindle that provides text-to-speech programming. He now alternates between reading middle school appropriate books....and collegitate classics. The looks he recieved when attempting to discord on 1984 at a doctor's office was priceless. He attempted Frankenstien but ultimately found it too scary. He is desperate for the Narnia books to come out in a Kindle edition. He does not enjoy audio books and prefers merely the text to speech assistance for when he is stuck rather than having the entire book read to him. He attempted Lord of the Rings but the old English writing is very difficult for him still. He has obsssessively read Harry Potter twice, and will read any Jack London book he can get his hands upon. He has also read Karl Marx and dozens of other utopian style literature. His most recent reading, I brought him down to middle school reading level to give his mind a break and introduced him to both The Phantom Tollbooth and The Bridge to Teribithia. He is now insisting he must read The Hobbit, though it is hard for him. If he loses interest, the back up plan is to get the Indian in the Cupboard trilogy for him to read.

It would be easy to forgot this child who discuss global warming, intricate social implications of war and peace, and who demands that knowing the diameter of a carbon nanotube IS the kind of emergency to halt our vacation and answer for him is still a child. His long, green hair shows his determination to be antihegemonic to the entire world. Over and over again, strangers call him a girl and he politely informs them that he gets that all the time but he really is a boy. I recently discovered that the point of the long hair is the sensory impact. He has created his own weighted blanket phenomenon on his head with long, thick hair that he never has to remove but can pull back into a basic ponytail to look more socially acceptable.

C has an overall dsygraphia which presents in both apraxia and dyslexia. He is also, as might be guessed, Asperger. Or as the psychoeducational evaulation put it "a touch of Asperger's Syndrome." The diagnosis was no surprise to me by the time it came, but I mothered him most of his life without that understanding or knowledge--remember I had no clue what Autism was when Micah entered my life. I certainly had not framed my most spirited child into that understanding until after I recieved Micah's diagnosis and began to learn what Autism Spectrum Disorders were even about.

Despite having to step by step explain emotions to this child, he can sense when someone needs empathy. He just cannot articulate what he senses. He is cuddly and attached and makes wonderful eye contact, all the reasons that I missed the Asperger's for so many years. He is obssessed with Legos, with Science and Science fiction. He builds. He sees in 3-D, a side effect of his dyslexia that makes it hard for him to hold his letters to a flat, 2-D presentation to read them. He is highly creative but after a stint in charter school where they attempted to grade his writing attempts, he is still stubbornly refusing to write without a lot of tears and struggles. He has only recently been ready to attempt the task again.

From the moment we started Micah's adoption, C's goal in life was to become a doctor and eventually direct his own Cystic Fibrosis clinic. When Micah died, C has shifted his goals somewhat. He's afraid that working in direct contact with CFers will be too painful for him. Instead, he wants a PhD in Biophyics so he can work to find better treatments and eventually the cure for this awful disease. My only hesitation on whether C will see that dream is the reality that he loves programming as much as he loves breathing and I often wonder if he will be lured into a career of programming instead. Somehow, I doubt it, but I suspect he will retain programming as a hobby for his lifetime.

C was Micah's buddy from the day Micah entered our home. I cannot count how many times I reassured C that it was *my* job to care for Micah, but still he remained right by my side, watching over his brother. He knew every treatment, every disease process, every medication, ever dosage and timing and sequence for everything Micah required to maintain life. He knew what Micah needed. He knew when and why he needed and what it did for Micah. C knew EVERYTHING there was to know about Micah, inside, outside, and upside down. He was Micah's buddy. I couldn't have pulled him from my side in caring for Micah if I tried, and I did try. I feared that attachment was going to hurt him deeply in the end. There's a reason C is still in weekly grief therapy. Losing his little brother hit him harder than everyone in this family except L who was Micah's best friend. I have no doubt that loving Micah and losing Micah will be the defining point in C's life, which is why I believe he will go into research for Cystic Fibrosis. He could barely see for the first month after Micah died, his grief was so great. I would not have denied him that great love even knowing how hard his healing journey has been and will continue to be. He refused to sleep anywhere but in the next room from us the last two weeks of Micah's life and he slept in a nest on my bedroom floor for the month afterward. This child has a spirit like no other I have ever seen. I see him finally on stable ground and I wonder in amazement how this child will take this intelligence that I have never personally seen in one human being before and unleash it in the aftermath of his soulmate and brother.


  1. Your kids are remarkable. You bring them to life here and it makes me want to meet you all just to see this array of beautiful humanity. Give them hugs from an online stranger?

  2. Thank you, postraphstunner. That was actually my purpose in this set of posts. I often hear that it seems impossible for a mother of a large family to *know* all of their children. Yet, my friends often express astonishment that I know my children so well. My children are so precious to me, but I wanted to demonstrate that mothers of large families know their children as intimately as mothers of small families as well.