07/21/14

Project Me

“People tend to judge others by their actions while judging themselves by their ideals.”

Author unknown

 

As I noted in my blog entry “A different kind of birthday”, a significant portion of my adult life has been based on a fairly limited set of ideals. It’s hard to write about this and not come across some sort of missionary. Be assured, this isn’t my goal. Zeal requires a great deal of assurance, and my path feels more like a long-term limited experiment. I am my own project. The only thing I can say for sure is this; so far it is working for me.

A night or two ago I decided to list out these ideals, and as simple as they appear on the surface, they can be surprisingly deep or complex upon serious implementation. It is important for me to understand that these are Ideals, and the ideals are my goals, not a list of my behaviors. I am as far from perfect as everyone else.

Without further ado, the list;

-Honesty

This has been the cornerstone my project. Early in my sobriety I learned that stark honesty is crucial. About this time I heard someone say at an AA meeting that “People who are brutally honest often enjoy the brutality more than the honesty.” I took this as a cautionary point, and remain mindful that honesty for me must not be a whip for self-flagellation or a club to hurt others. I have also learned to watch for my biases and my personal agenda, as they are insidious in how they color perception

-Do the right thing

This is so simple in concept and often so hard to actually do. I subscribe to the concept that each and every decision is a way point, and we invent ourselves decision by decision. Most of these are simple decisions, and by actively managing them, much like muscles conditioned by repetition, making the “Right“ choice consistently on simple matters makes it easier to make the “Right” choice when it’s tougher.

-Own my actions and my words

This is an honorable path. I try to avoid weasel words, and I try to hold myself accountable for what I say and do. Like many of the ideals I am working on, honesty comes in to play here.

-Don’t allow the behavior of others to affect my behavior

I’m blessed to have a fantastic man for a father. I often have asked myself “What would Dad do?” He would never shun socially inept people, mock others, engage in gossip, or respond to rudeness with rudeness, regardless of what others say and do. In translation, I try to be like my dad. I now need to stop talking to the drivers on the road who have upset me. They can’t hear me, and I get nothing from verbally pointing out their faults…even if they don’t know how to use turn-signals.

-Hold others with compassion                                                                                                                                                 

This is a fairly recent goal, and quite simply it requires that I withhold judgment. I understand that each life is shaped by events that I know nothing of. I must also remember to apply this ideal to myself, and allow myself to fail without recrimination as long as I adjust my efforts and learn from mistakes.

-Seek beauty

There is a world of beauty and wonder around me, I simply need to open my eyes and my heart to see and experience it.

-Maintain a beginner’s mind

This is a Zen Buddhist philosophy that I came across several years ago. When I first read of it I had a deep understanding. In the book Zen Mind, Beginner’s Mind by the Zen teacher Shunryu Suzuki, said: “In the beginner’s mind there are many possibilities, in the expert’s mind there are few.” Long ago I realized that for me, mastery is an illusion; I would always have room to grow…as long as I was open to it.

-Don’t compare myself to others

My goal is to be the best “me” possible, and at the deepest levels possible, this has nothing to do with how well or poorly another person might accomplish the same task. It will either make me feel superior or inferior, and both conditions intrude on my path.

-Self Advocacy

I have found that I am a capable advocate for others, but without change, I am an extremely poor advocate for myself. Of all of my goals, this is one sometimes feels the hardest for me.

-Forgiveness

I watched someone I love dearly refuse to forgive her mother for some serious abuse and neglect that she was subjected to as a young girl. Her mother had changed, but the resentment lived on. I decided that to the best of my ability, I would purge myself of the poison of resentment. My forgiveness isn’t a gift to those who’ve wronged me, it’s a gift to myself.

-Be open to the presence of my Higher Power

As part of the 12 Steps of AA I “turned my life over to my Higher Power, as I understand him”. Over a couple of decades I have felt little need to name this presence in my life, but I certainly feel it. Many of my life-changing decisions have been based on seeking a quiet (quiet) nudge. Like beauty, I need to be open to it.

-Ongoing self-evaluation

I question everything, most of all my own actions, perceptions, and conclusions. Over the years that I’ve made this a part of my life I’ve discarded many of my conclusions, but I have become surer of the ones that survive ongoing scrutiny.

So this is my list. How hard could it be?

07/5/14

The Amazing Mr. Ethan

 

Last week I took my 20 year old daughter Maria and my 14 year old son Ethan to a Korean restaurant for lunch. It was Ethan’s 3rd trip to a Korean Restaurant, and like the first time, he insisted on using chopsticks. He was over the moon as he tried each of the 10 or so dishes of banchan (spicy Korean side dishes). When he tried the kimchi he relished it and marveled at how spicy and complex the flavor was.  If you knew Ethan’s story you would be amazed. This talkative, polite (he addresses adults as “sir” and “ma’am”) enthusiastic young man’s journey is nearly unbelievable. My wife and I have 6 children, and all of our kids are incredible, but Ethan is in a class by himself.

SONY DSC

Make no mistake, Ethan has many challenges and many developmental issues, but he is much more  than that. To understand his growth into the loving and humorous young man he is now, you need to know how far he has come.

14 years ago we were taking a break from foster care. Between living with, and loving the children who have been so hurt by their parents and the trauma of being taken from them, and the bureaucratic mindset of a certain percentage of workers in Alaska’s Office of Children’s Services, a break is sometimes needed and this is where we were at.

We were busy parenting our 4 kids, who ranged in age from 6 to 14, when we got a call from a social worker. She was desperate to place a medically fragile newborn and she had been told that we were one of the few homes set up for therapeutic, medical, special needs. We were also a “Native placement”, an important consideration if the foster care placement evolved into an adoption. She offered little information beyond the fact that the infant in question had a cleft lip and palette and other unspecified needs. Kim and I talked, and we both felt an unusually compelling call to help him.

I was at work when Kim made her first of many visits with Ethan at the Alaska Native Medical Center. Kim was on the elevator heading up to see Ethan when a stranger asked her if she was there to see the baby. The stranger introduced herself as the baby’s aunt, and told Kim that the family had a history of domestic violence, drugs, alcohol, child molestation and child abuse. She was afraid that if Ethan stayed with the family, he too would be abused.

Ethan was in a room by himself in pediatrics, and he was a sight to see. His mother had no prenatal care while she lived on the street. She had also used drugs and alcohol throughout her pregnancy, and all of this had affected her child. In addition to being covered in sores, he had a major cleft in his upper lip, with about a third of his lip missing and the cleft extending up into a nostril. Not as visible was a major cleft in his palette that would be prominent in his care later. He was also tiny, only weighing 3lbs 12oz at birth, and due to an eating disorder, he had lost considerable weight since.

Kim also found out from Ethan’s aunt that a couple, a doctor and nurse from ANMC, had tried to foster Ethan, but found his needs so demanding that they couldn’t meet them and he was returned to the hospital. Make no mistake, Ethan was a handful. He was still detoxing from drugs, and due to physical and sensory issues, he was nearly unable to keep food down. He would spit-up about 4/5th of every bottle drank. The hospital didn’t have the staff to devote someone to feed him, and he was getting weaker and weaker.

Kim began to spend long hours at the hospital holding and feeding him, and slowly he began to grow. As time went by a CT scan found that Ethan was missing almost all of his corpus callosum, the structure that connects the two halves of the brain. Alarmingly, a significant portion of his frontal lobe had never developed. He also possesses a highly unusual chromosomal deletion, has Fetal Alcohol Syndrome, and is Autistic. These are a few of the 27 medical diagnoses that he has received. We were cautioned that he may never walk, talk or be able to express emotion. We decided to adopt him.

Ethan before his first cleft lip surgery

Ethan before his first cleft lip surgery

Ethan came home, and my wonderful wife showed a capacity for his care that still amazes me. Our daughter Jennifer, who was 8 at the time, has Downs Syndrome, and many of the techniques for her care such as infant massage came into play with Ethan. But more than knowledge or technique was needed. He needed someone who wouldn’t give up on him, and Kim is the most stubborn person I know. By far. I followed Kim’s lead, and learned as I went. Our other children became playmates and their love and play proved critical to Ethan’s growth.

Over time, progress was made. One unexpected effect of an upper GI endoscopy was that the intrusive study seemed to desensitize his stomach, and feeding became much more productive. Even with this advance, it required monumental efforts to feed him. Sensory disorders seemed to cause any touch to be perceived as pain, causing Ethan to screamed shrilly. Early surgeries made temporary repairs on his cleft lip and palette, but he remained a drool machine. My memories of that time are of Ethan wearing a pressure shirt (the pressure helped him relax), bib after bib, with wrist bands on that he used to help control his drool.

I don't want my picture taken

Of course he experienced delays. He was slow to crawl and finally walked at 20 month. At 3 years old he was calling the TV “mamma” and was wearing braces to his knees. Language was a huge struggle. But we had our team; our family pulled together, and we had an awesome medical team.  The 20 medical doctors on Ethan’s team were the tip of the iceberg; there have been a myriad of nurses, dentists, anesthesiologists, image specialists, occupational therapists, physical therapists. We found great help from Darlene Batchelder and Cherry  Byrd from Anchorage’s Arctic Speech Therapy. Our friendship with Darlene and her husband Phil continues to this day.

At some point, Ethan, the person, emerged from his disabilities and diagnoses. He has faced  nine major and minor surgeries with a great deal of courage. He has endured procedures such as palate expanders, bone grafts,  and Orthodontic care for his entire life, but a sparkle was emerging.

Kim has homeschooled Ethan, and she can track his intellectual growth with great accuracy. He now reads for pleasure, has made huge strides in his math skills, and writes  rather creatively. Homeschooling has allowed Kim to tailor his curriculum to his interests as they develop. She manages his Individualized Evaluation Plan (IEP) with such skill that it is used by our school district as an example to other parents. Ethan is in good hands academically, but he has to manage his frustration daily.

Once afraid to ride on a four-wheeler, he overcame his fear and loved to ride with me on my (now gone) street bike. He loves Japanese monster movies, fast cars, and video games. One day he wishes to meet Mark Wahlberg, who he thinks must be an interesting and nice guy. He routinely destroys me when we play Call of Duty, a combat video game, in spite of my years as an Infantryman. Oh, the shame! I should have never taught to smack talk!

Ethan2

At one point he was totally insensitive to our pets, not an uncommon situation for someone on the Autism spectrum. What is unusual is that he decided to change, and he has worked with incredible diligence to learn the language of our cats and dogs. When our skittish rescued sled dog came to him to be petted we knew that he had made a profound breakthrough.

As to the caution that “he may never show affection”, I hear at least 10 times a day that he loves me, and I hear “You’re awesome!” at least 4 times a day. If you are in his circle, you are loved, hugged, and praised to no end. Sometime he forgets how long a hug is “supposed” to last, but that’s a small issue.

It’s awe inspiring to see the work he has put into crafting himself into the person he is today. He still has challenges, but he meets them head on. His growth is only matched by his enthusiasm and subtle humor. He is curious, thoughtful and inquisitive. We never know where his interests will take him. This all would make for very satisfactory progress, but he continues to push his boundaries, like challenging his fear of heights or experimenting with new foods. Somehow he has ignited a desire in himself to continue to improve.

We have several new foster kids in care right now, and Ethan was feeding the youngest, a 3 months old. The baby was babbling to Ethan, who was initially oblivious to the baby’s attempts to form a bond. Kim told him to watch the baby’s eyes while he fed him. Ethan tried it, to exclaim later “Wow! He really says a lot with his eyes!” An amazing insight from someone who struggles with non-verbal cues.

Ethan making eye contact

Ethan making eye contact

Time will tell how far the Amazing Mr. Ethan progresses, but I expect that more surprises lie ahead, and look forward to seeing his story continue to unfold. An amazing young man indeed. Now to introduce him to Mexican food!