Joshua and His Grandfather

It's strange to me that of my father's five grandchildren, Joshua got to spend the most time with my dad. Josh was six when my father died. Hope was three and Anna was two. My sister's son was a year old and her daughter had not been born yet.

As I approach the third anniversary of my father' death, I've been thinking about what kind of grandfather he was. . . and the experience of grandfathering that he got to have during his life. My dad loved Josh with such a beautiful love. As you can see in the pictures above, my dad really gave himself to trying to connect with Josh despite what a different type of child he is. My father was a very composed, dignified, introverted person. Prior to his interactions with my son, I've never seen him go down a slide in my life. I don't remember him being a big "reader of books" to my sister and me. But I think that my dad knew that Josh was very special and he was willing to stretch his own personality and comfort zones to connect with this non-verbal, sensorily overloaded, non-Korean, non-blood connected kid. Joshua was his first and real grandchild, pure and simple.

During the final year in which my father battled cancer and endured eleven rounds of chemotherapy, one thing that he made sure to do was to create a fund to help take care of Joshua in the future. I was so profoundly touched that my father, who had worked so hard these many years of my life to provide for me, was now providing for my son, who's future was so unknown. My dad expressed, through his "language of love" of provision that he loved Josh and that he loved me.

The other day, Anna asked me, "Mom, did I ever meet Papa?" I showed her some pictures of herself, as a toddler with her grandfather to answer her question. I'm so sad that my girls will not grow up knowing their grandfather. Yet, the memories of my father's love for my son are a great comfort to me.

Embarrassment, Shame

I've been thinking a lot about embarrassment and shame. Josh has never exhibited having a sense of shame. He does not hide things. He has never lied to me. As far as I have seen, his brain is not wired to be socially connected or aware enough to experience shame. He is nine years old and he does not care if anyone sees him naked. He just walks through life being pretty much who he is and he does not put any of his energy into managing other people's opinions of him. Josh doesn't care about that sort of thing at all. It's kind of beautifully free.

My observation is that the rest of us spend lots of time and energy managing our own images. If we are honest, every conversation, every expression, (even every blogpost!) has some element of shaping how we want others to see us. And at the very bottom of that is a sense of insecurity, fear that we are not quite OK just how we are. We are concerned about how others see us and when we find ourselves in situations where others might (or do) see us in a negative light, we are embarrassed and ashamed.

This develops amazingly early in typically developing people. For example, the other day, I had given Anna, my five year old, some smoothie for breakfast. We were running late so I put it in a sippy cup to drink in the car. Generally, we don't use sippy cups anymore because everyone can handle normal cups but I did manage to dig one out. Anna hadn't finished the smoothie in the car so I told her that she could bring it into school with her, put it in her cubby, and finish it during first recess. Anna thought about it for a moment and then covered the sippy cup with a jacket and carried her backpack awkwardly over them both.

I said to her, "What are you doing? Here, let me carry that for you."

Anna whispered in a greatly annoyed, anxious voice, "No, mom. People might see that I have a sippy cup and they might think that I'm a baby!"

Now, I know that it's quite developmentally normal for kindergarteners to want to differentiate themselves from "babies". However, I was struck her desire to hide, to manage what others saw of her. She was developing a fear based impulse to be hyper aware of how others might see her. I know that some people live in this fear their whole lives. Maybe she's right. Maybe the other kids would make fun of her but the mom in me was still sad to see the chains of image management beginning to have a place in my innocent baby's life.

I put the picture of Adam and Eve at the top of this post because I've been thinking about their story. It's a story of the freedom and innocence that was God's original intention for us crushed by the sinful reality of our hearts (and this world). They were naked in the garden because, being totally dependent on God, they did not have to cover themselves up. They were free to be fragile creatures and still be okay because they were in a complete trust relationship with a God who fully took care of them. Only with the advent of independence came the need to cover and protect themselves. Independence from God begat shame, anxiety, fig leaves, image management and so much more.

I long for the freedom and innocence of the garden. I get so sick of living in this world of deceptive image management. I'm tired of being a woman in a culture where the message is that you have to be super skinny to be physically affirmed. I wish I could stop wondering if I was smart or friendly or charming or witty enough in this or that conversation. I yearn to be able to live just one day not being concerned about how others are evaluating me. Wouldn't that be so amazing? Just to be who you are and not be worried about it? There is a part of me that admires that part of my son who is free in this way. He just is who he is, take him or leave him.

I had an encouraging moment with my other daughter, Hope, the other day. We are needing to find a better school placement for Josh so we checked out the special education class at Hope's school (Josh is currently at a different school). When I told her that it was probably not a good fit for Josh, Hope started to cry.

"But I want Josh to go to my school!" she lamented. "I want to see him everyday, Mommy!"

As I comforted her, I cherished the fact that, Hope is not (yet) concerned about being associated with this kid who walks around flapping and making strange noises. She is aware that he is different but she is not embarrassed by him. When we go out in public and Josh has his hands down the back of his pants, she just says, "Hands out, Joshie!" Her love for him trumps shame. I love the freedom of this innocence. I am writing this blogpost to help me to remember it.

Our Horse Whisperer

In our quest for physical activities for Josh, this fall we were able to connect with a woman who owns several horses and does private lessons for kids in a nearby town. The first meeting was quite astonishing. Josh immediately went up to one of the beautiful, calm horses with utter confidence. He patted the horse's face, nuzzled his own face in their the horse's flank and sniffed his mouth. Then my son started to giggle and smile. Joshua thoroughly enjoyed being around the horses. I have no idea why. After giving Josh plenty of time to "hang out" with the horses, we asked him if he wanted to ride one. Josh whispered, "yes" with a tone of seriousness and awe.

The ride itself was pretty uneventful. Josh had to work pretty hard to stay on the horse given the ups and downs of the trail. I think his low tone core muscles got quite a work out. Josh was very quiet during the whole ride and even sang a little bit along the way. Clued out suburban mom that I am, I had worn some cute sandals with a bit of a heal so my feet were heavily blistered by the end of our 45 minute trek. I didn't care one bit. We found an activity for my son that he enjoyed and was good for him. I was thrilled!

At the end of our time, I nervously asked the owner of the horses how much she would charge. It is quite common for people around here to charge $100-$150 an hour for therapeutic riding for special needs kids. I have done reams of paperwork trying to get our insurance to cover even part of it to no avail. The woman, who obviously had a heart for kids like Josh, said to me, "Could you folks handle $20?" It was music to my ears!

Since that day, we've gone riding about 5-6 more times. Josh always has a quiet but happy demeanor. This last time, we were apparently taking too long to get things going so Josh went and found a step stool and placed it next to a horse, took my hand, and said, "Wanna go upstairs on the horsey." Once up, Josh was content and calm.

There is a movie that came out a few years ago called "The Horse Boy" about a family that takes their autistic son to Mongolia to hang out with horses that are inexplicably soothing to him. I don't know about all of the mystical stuff that the movie explores but I do see that there is something about the horse/human connection that is mysterious. Never having been a horse person, myself, I haven't experienced this personally.

 My father was a horse person, having ridden them extensively in his youth in Korea. Later in his life, he had the honor of being on South Korea's first equestrian Olympic team ever for the 1964 Olympics in Tokyo. But for me, horses have always just been expensive, inaccessible and smelly. We could never afford to get time on horses as we were growing up so they were just big creatures on TV to me. Now, I have more respect, more questions and more of a sense of intrigue about the gift of horses.

Managing Millions of Meds

A snapshot of the various meds that Joshua uses on a (mostly) daily basis

My son is a medically complex guy. Part of his brain disorder means that his pituitary gland doesn't work well. We give him pills and a shot every day so that he will have the hormones that his body needs but does not naturally produce. It turns out that having your hormones off-kilter means that there are a lot of random other things that can go wrong with your body. I'm not sure if Josh's plethora of other medical problems come from his hypopanpituitarism or just because he's a complex kid. All I know is that I made a list of his medical doctors the other day and this is the list that I came up with:

Pediatrician

Opthalmologist

Endocrinologist

Neurologist

Gastroenterologist

Ear, Nose and Throat specialist

Sleep Disorders specialist

Dermatologist

Urologist

Allergist

Psychiatrist

Additionally, most of these specialists are seen at our local Children's Hospital, which is a world class hospital but also a teaching hospital. This means that each specialty clinic has a team of attending physicians and a group of residents and fellows that often see, follow, and manage meds for Josh. This means that many of these specialties has at least 3-5 different physicians that I interact with.

It's definitely been a brain stretching experience for me to learn to manage all of Joshua's medical needs. In fact, when I think about the reality that this is what I do (almost always) accurately and successfully every day, I am impressed. In college it took all the skills I had to keep track of my own purse and backpack. I've never been a detail oriented person. It was a joke among my friends about how messy my room was and how I was always forgetting things. I guess you do what you have to do and stretch how you need to stretch to love the people that God has put in your life.

Adoption is Natural

We had a funny moment today at the supermarket. The girls and I had zipped over to pick up a few items before Josh's bus was due to arrive at home. To "help" the girls to be cooperative during the short time that I had to pick up Josh's meds at the grocery store pharmacy, I gave them sugary snacks. By the time we were at the check out counter, they were very energized, outgoing and . . . effervescent!

The cashier noticed that they were calling each other "sister" and asked if they were twins. When I said, "No, they're a year minus three days apart", she said, "Yeah, they don't really look much alike". I don't usually do this but I offered the information that, "in our family, two of our kids are adopted and one is biological". Upon hearing this, Hope started loudly spouting, "I'm adopted! I'm adopted!" Not to be outdone, Anna began loudly saying, "I'm not adopted! I'm from my Mommy's belly!" It spiraled quickly into a game of who could talk faster and louder and they soon erupted into a chorus of giggles.

Adoption is pretty normal in our family. We've worked hard for it not to be a strange, secret, or shameful thing. By now, it's just a fact of life. Hope has a birth mom that's not in our family and Anna's birth mom happens to be the same person as her mom. "We're all different!" is our family mantra. Everyone in our family has a different ethnic composition. Being different is normal.

Actually, since my husband and Josh are also adopted, the adoptees are the majority in our family. Anna has had her struggles with NOT being adopted and has voiced that she wishes that SHE had a birth mom outside of our family who took her out to ice cream. I've tried to tell her that I am both her mom and her birth mom and that I could take her out to ice cream. She informed me that I don't count. (So much for 27 hours of labor and then giving birth to a 10 pound 3 ounce little girl.) She also wishes that she had an adoption agency that gave her a special teddy bear like Hope and Joshua's agency did.

I'm sure that the struggles will change over time but I hope that they will be based on a foundation of safety and security in being loved.

My girls are getting to be better friends as the days go by. Sure, they still fight and whine but they are very close. I love to hear them talking after I have put them down for the night. I listen in as they debrief their days, talk about school, and even quietly sing songs together.

They pretend to have a secret language that only they can speak or understand. They make each other laugh A LOT.

I also love that Hope and Anna share a bond with their brother. Each in their own way, they have such a natural love for their brother. Anna is often concerned about Josh's safety. Hope gets very angry if we chastise him. If we are driving in the car without him, one of them will inevitably ask, "Where's Josh" or "When are we going to pick up Josh?" He is an important part of their world, even though he doesn't do a lot of the things that another older brother might do.

I love knowing, with absolute confidence, that God has brought our little brood together. We are held together by a bond that is stronger than blood.

Sometimes, Things Just Don't Work Out

Soccer Mom. Part of me disdains that term because it makes me think of being part of a "demographic" that politicians target. I want to say, yes, I drive a minivan and I live in suburban America but don't peg me as just a "soccer mom". I'm about more than just the activities of my kids, you know. Don't define me by what my kids do. Blah, blah, blah.

However, truth be told, part of me wants to join that club. Deep inside, I WISH that I had to schlep my 9 year old son to practices and games all around town. I want to be able to complain that he "is eating us out of house and home because he's so active all the time!" as some other moms do. It would be nice to have to get to know a whole team full of other boys who run around and get really dirty and sweaty together. I would bring healthy snacks and maybe have some of them over for playdates (or is it called just "hanging out" when you are 9 years old?).

Alas, team sports is a universe away from where my son lives. Josh is still a one to one kind of guy. He needs a parent or an aide with him for any activity. Otherwise, he could wander off or spend hours walking in circles or spiral into a long session of crying and screaming.

I had resigned to never get a chance to be a soccer mom until my girls were older. Until I heard about AYSO VIP soccer. It's a branch of AYSO that's specifically for kids with special needs. I checked out the website and it said that they have individual volunteers for each kid who needs a buddy. It was also very local and free. I decided to check it out.

The first session was awesome. All of the team members got free, bright green, matching uniforms. The older special needs kids have been doing this for many seasons and had a lot of enthusiasm and team identity. After warm ups, they began with a team cheer, "Ho, Ho, Ho Green Giants! Yeahhhhh!!! " Several kids with Downs Syndrome were ablaze with excitement and enthusiasm, bursting out in cheers at random times. One kid was completely blind but ran around chasing a ball with a beeper with a buddy with him at all times. It was actually pretty inspiring and beautiful.

Josh was not thrilled or motivated but he was willing to go with it. His vision is good enough to see a soccer ball, though probably not good enough to want to run around chasing it. He got paired with a volunteer lady with a crazy "can do" spirit who patiently got Joshua to kick that ball around quite a bit, even dribbling around cones for a bit. He whined the whole time and kept asking to "go for a ride in the car" but he did it.

However, the next times were not as good. He got paired with other buddies, sometimes kids who were not much older than he is, who did not "get" him or how to work with him. My husband works on Sundays so I had my wiggly girls along with me. At one point, I had taken my girls over to the playground on the other side of the park for a bit. When I returned, Josh was laying on his back, screaming and kicking anyone who tried to engage him or be near him. His buddy had clearly had it and looked very panicky. No one knew what to do.

It was at that moment, that I realized that soccer, even soccer for special needs kids, was not going to work out. Sometimes, things just don't work out. Kids don't fit into neat templates of what a lot of other kids do at their age. Activities are supposed to challenge but not torture our kids. The fact that I had done reams of paperwork to register for AYSO VIP soccer does not mean that he has to keep doing this thing that he clearly did not enjoy. My fantasy of being a normal soccer mom does not get to determine what Josh's activities will be. We tried it. It didn't work. That's ok.

I packed everyone up and took everyone to the closest coffee shop. The kids were thrilled to each get a cup of ice water and a straw. (Sometimes, it really doesn't take much, to make these people happy.) I splurged on a very large latte for myself. We went to another park to play in a more relaxed context. I took some pictures of my beloved boy in his cute soccer uniform, knowing that it would be the last time he wore it. Maybe we'll try Special Olympics track and field next.

Pasta Therapy

Tuesdays are the night that my husband regularly stays late at work. They are also the day when behavior issues in my kids usually spike. Today was no exception.

The day was long. The house was a mess. The needs were many. By the time I put them all to bed, I was unfathomably tired. Launching into the dishes, I realized that all I had eaten for dinner was a slice of melon, two pizza crusts and a random piece of candy that I found in a tupperware (don't ask). It's quite possible that I had stuffed other things into my mouth while moving at the speed of light around my kitchen but I couldn't remember.

I was about to smear some peanut butter (that was already out on the counter) onto a piece of bread and eat it while cleaning when, for some reason, I found myself chopping a random piece of garlic. I chopped a few more. Then I browned it in a pan with some olive oil and the smell of it was wonderful and soothing. Inspired, I cut up a few ripe tomatoes from my garden and put that in along with some basil and a half an onion. I rummaged around my freezer and found some frozen shrimp. I pulled out some cold pasta (some in the shape of wagon wheels and some in the shape of Scooby Doo) from the fridge and realized that I was actually cooking a meal for me; yes, just for me. Well, while we're at it, let's squeeze in some lemon juice, and a few spoonfuls of capers. I finished it off with salt, fresh ground pepper and some shredded parmesan.

Then, I did something strange and unusual. I poured a glass of blood orange soda and sat down at my dining table with my pasta and I ate it. I did not multi-task for those 10 minutes. I did not read the paper. I did not check my email. I did not contemplate my to-do list. I let the dirty dishes and Joshua's unfilled pill box just sit in my kitchen while I enjoyed the taste of my dinner. And while I just sat and ate this fabulous thing that I had cooked FOR MYSELF, I felt my own sense of value and self respect increase in my own soul.