showerheads and hairdryers

Joshua and His Grandfather

2012-02-11T21:54:00.000-08:00

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

2012-02-02T20:27:00.000-08:00

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

2012-01-02T19:10:00.001-08:00

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 the beautiful, calm horses with utter confidence. He patted his horsey face, nuzzled his 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?" 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 and then having been on Korea's first equestrian team 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

2011-11-06T15:19:00.000-08:00

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

2011-10-18T22:00:00.000-07:00

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

2011-10-10T11:08:00.000-07:00

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

2011-10-04T21:16:00.001-07:00

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.

Thinking that People are Idiots

2011-09-24T10:09:00.000-07:00

A few days after writing my last blog post (about a very rude and out of touch man at Bed, Bath, and Beyond ) I had an interesting interaction with God. I was at a memorial service for a friend. We were in the middle of a deeply emotional and intense moment of musical worship when I felt that God brought to mind the interaction with the man with no verbal governor. Alongside the feelings of sadness and grief that I was already feeling, all of the feelings of anger and resentment toward that man (and the many people who have said stupid things about Josh) exploded inside me.

Ironically, we were singing "Amazing Grace" while I was reliving my thoughts and feelings of hating the stupid idiots that populate the planet and my life.

"Amazing Grace, how sweet the sound that saved a wretch like me . . ."

("Oh yeah, and also that soccer coach who was rude to Josh, what an incredible jerk . . . ")

A few minutes later, I heard God say to me, "Have you ever said anything stupid?"

Of course, the answer is, Yes. I know in my heart that I say stupid things all the time. In fact, just a few minutes before, during the socializing time prior to the memorial, I had said something to an acquaintance that I deeply regretted. So, yes. I have and I feel bad about it.

Slowly, the incongruence of the moment stuck me. Here I am singing about grace, supposedly worshiping the God of grace, acknowledging the grace in my friend's life. I walk around as an undisciplined extrovert counting on the grace of God and people to cover all of the unthoughtful or inappropriate things that I might say. I think God was pointing out to me that it's the same grace that covers the stupid idiot things that random strangers say about Josh. Can you believe it? Grace covers insensitive things said about kids with special needs.

I thought back to that moment at Bed, Bath, and Beyond and imagined Grace being present. I pictured the face of the man who had said those things about Josh. Though the lens of grace I could see that he was not a stupid idiot. He was a person in need of grace, just like I am. I forgave him and felt a burden lifting from my heart.

" . . . was blind but now I see."

Bed, Bath and Beyond

2011-09-16T22:15:00.001-07:00

Tonight I took Josh on a quick errand to Bed, Bath, and Beyond. It was going quite well since there were no other children there, including his sisters. We were in line to pay for my item when Josh started happily nuzzling a big pile of pillows that were near the check out counter.

He was incredibly happy, giggling, and having a full sensory experience of the pillows when I hear someone behind me say, "What is wrong with this child?" I turn around to see a middle aged man standing there with his college aged son. Without skipping a beat, and with out being mean, I simply said, "He has autism." Just three words. There could have been so many.

The man went into full on verbal backtracking mode, rambling about how God has a special blessing for these kids sometimes and that he has a cousin who has a child with polio and that child is the most loving child . . .

I listened for 2-3 long minutes. At the end of 3 eternal minutes, everyone in line was clearly mortified. The college aged son found a reason to move elsewhere in the store. I paid for my item, said goodbye to the man and walked out of the store.

Can someone explain to me why a person would say, out loud, "What is wrong with this child?" right behind that child's mother? Even if there was nothing "wrong" with my child, I would be so offended. What is wrong with my child? What is wrong with people out there?

A Perfect Summer Day

2011-09-01T21:35:00.000-07:00

This summer has been a tough one for Joshua and his Mama. Top 5 things that Joshua has been up to that has driven his mom crazy are:

1. So much crying for apparent reasons and no apparent reason

2. Eating lots of non-food items like rubber stamps, video tape (see previous post), toilet paper, entire pages of beloved books. He has also gotten into eating pseudo-food items that are still completely inappropriate like previously chewed gum that has been stuck to the side of a public garbage can. I'm not kidding.

3. Demanding random videos that I rented from the library many months ago. He would ask for them over and over again for hours. "Want Baby Galileo. Want Baby Galileo. Want Baby Galileo"

4. Pouring liquids into strange places (like my coffee into his toy boxes in his room). Pouring water onto floors, etc.

5. Intentionally peeing on the floor (or onto piles of clothes) in his room. This one made me the most crazy. One time he peed on a TV/VCR that was on. He could have electrocuted himself! We were way beyond this in his potty training journey but suddenly, he went way backward with this behavior.

So, yes. Difficult summer.

But I have to tell you about one day that was wonderful.

A few weeks ago, we were at a friend's cabin in the mountains for a week. One day, we rented a boat and spent the good part of a day on a lake. We explored various places around the lake, went hiking, and soaked up the glorious sun.

Of course, I was worried about how Josh would be. There's not really many places to escape if he's having a hard time on a boat. But Josh loved it. The hum and vibrations of the motor, the sound of the water, the slightly cool breeze; these things were pure sensory pleasure for Josh.

A friend, the dad of the other family who was with us, decided that this was the day to introduce Josh to hiking. Josh did shockingly well with it. We couldn't believe how hard he worked to climb up rocks and walk up hills. Josh even jumped off of a rock into the lake (with some help). He swam. He ate watermelon quietly. He even told me when he needed to go to the bathroom.

And, as everyone knows, if Josh is happy, Mom is happy. I was so happy. How I want this kid to be happy. . . from the bottom of my soul. I know that I can't control this. I have little power to make this happen. But when it does, it's so wonderful. A professor of mine once told me that "a shared joy is a double joy". I want to share with the world about one perfect summer day!

Tantrum Time at Ikea

2011-08-07T16:32:00.000-07:00

The other day I got confident and took all three kids on errands. We did Nordstrom Rack and Home Depot beautifully. There was a strong breeze out where we were so walking along the parking lot feeling the wind was delightful to Josh. It was strange moment of consistent obedience and happiness to be with each other. So I thought, why not? Let's go to Ikea as well. It was just across the street, we've got plenty of time left in the afternoon, and my girls love the childwatch there.

Things continued to go well. The girls were quickly dropped off at the childcare area and I attempted to go into the main showcase area to pick up one small item that I had meaning to get all summer long. Alas, it was not meant to be.

The high pitched sound of babies or young children crying or screeching is like kryptonite to my auditorily sensitive, autistic son. For some reason, the store was teeming with unhappy small children. (Later, I found out that the restaurant was having free meals for kids). Josh's body tightened up immediately. He held my hand with an iron grip. After a few minutes, he couldn't stand it anymore. He had to do what he does to defend himself and to show his great displeasure. Josh started screaming.

Now sometimes when Josh screams, it's just a very loud, "Ahhhhhhhhhhhhh", often accompanied by big tears and hitting himself on his head. At other times, Josh seems to feel that he wants to use words to yell or scream. He does not choose to use words that are specific or appropriate to the situation like, "I hate this!" or "Make them stop!" We have even tried to get him to use his words when screaming, feeding him lines like, "I don't like that noise!" However, it seems easier to his mostly non-verbal brain to just pick a random phrase from his memory and scream that phrase. They are usually phrases from songs since Josh's world and brain seem to be filled with songs and music. More than once, Josh has had screaming tantrums using worship songs like, "LORD, I LIFT YOUR NAME ON HIGHHHHHHHHHH!" It's pretty amusing, except that you are being tortured by his screaming.

This day, Josh chose to use words from a song that he must have heard on the radio (yes, I've been turning on the radio for him in the car lately because I've been feeling like if I have to listen to the Wiggles CD one more time, I might have to shoot myself.) I turn the front speakers in my van off so I can barely hear the music and Josh can get all of the back speakers to himself. SO, here we are at Ikea, with a million people around us and Josh is screaming, at the top of his lungs, "I DIDN'T MEAN TO TURN YOU ON!!!! I DIDN'T MEAN TO TURN YOU ON!!!! I DIDN'T MEAN TO TURN YOU ON!!!!" . . . over and over again, with tears and head hitting.

And the thing about Ikea is that they do this evil thing where once you are in the bowels of the stores, you have to walk, like, a mile to get out. They make you walk through the maze of the entire showroom in order to leave. It's like casinos in Las Vegas. There are no windows or easy exits. You are simply immersed in the reality of cheap furniture. This is wonderful if you are there to reimagine your kitchen. It's horrible if you are with a screaming child who is channeling a very upset Robert Palmer.

Also, most of the time, when Josh is upset in public, most people usually avert their attention out of kindness toward me. Sometimes people give me knowing smiles in a vague sense of support or compassion. Not this time. It seemed that everyone just stopped and stared. They were like a whole bunch of prairie dogs who had heard a strange noise and needed to pay attention for their own survival or something. I felt like I was in hell.

The next morning, as I was telling my husband about the experience, I had a good laugh. You know that mortified but hilarious belly laugh that comes from loving your kids but also valuing your own dignity. Ah, but parenting does not always allow dignity, now does it? At least in sharing about such mortifying experiences in good community, one can be restored and even healed.

Happy 9th Birthday, Joshua!

2011-08-03T13:37:00.000-07:00

Nine years ago today, our beautiful son was born. His birth mom had not told a soul in her life about the baby that was growing inside of her. She spent most of the summer alone, hiding her growing belly at home. Her home/ family situation was such that no one noticed much about what was going on. At 36 weeks, she labored at home, took a bus to the hospital, and gave birth less than an hour after arriving at the hospital. Most courageous of all, she asked the nurses to help her to find an adoption placement situation for the baby. Someone at the hospital called our agency and our journey began.

Three days after he was born, we got a call. A Cambodian/ Laotian/ Cuban boy has been born and his birth mom has chosen us from our profile. Did we want to meet him? We hurried home from the beach vacation that we had been on and got ourselves out to the town where he was. Josh was already with his (amazingly wonderful) temporary foster family. We met him for the first time at the offices of our adoption agency.

From the first moment I laid eyes on him, I knew that he was supposed to be ours. I know, I know. The previous sentence sounds hugely cheesy but it's true. He was a five pound, wrinkly, old man-looking Asian baby with a slightly yellow hue from the jaundice. But he was gorgeous. And I was so incredibly ready to be a mom . . . to this specific child.

Today he is nine years old and ninety pounds. He's gone from being vastly underweight and "failure to thrive" to being a bit overweight. He has strong opinions and has worked really, really hard to be as functional as he is. There is so much that he can do that the doctors told us that he might not ever do (like see, walk, feed himself).

The most important thing is that he knows that he is greatly loved. He knows that I'm his Mama and I know that he's my baby. Joshua is profoundly loved by the four other people in his immediate family and by a huge extended community. As I take a minute to remember and celebrate Josh's birth and how he was brought into our family, I am so grateful.

The County Fair

2011-08-01T22:17:00.000-07:00

A few weeks ago, we had quite a fun adventure at the local county fair. We were able to get in for free through an organization that serves families with kids with disabilities. For the first hour after the fair opened, the rides were free as well.

Normally, we wouldn't dare try to do such a potentially overwhelming outing with just two adults and all three kids but, hey, the price was right, so we thought we'd give it a try. We got there extra early, like we were told, and stood in line, waiting to get in.

The interesting thing is that it also happened to be senior day at the fair so we were standing for a good amount of time under the already hot sun in a line with only seniors and groups which included many individuals with special needs. There was a large class of autistic teens from a local high school. The atmosphere was an eclectic blend of excitement and crotchetyness. My husband wisely elected to stay in the car with Josh while I kept our place in line with the girls.

At one point, the sun and the waiting got to be too much for an autistic kid behind us. He was about 9 years old, about the same as our Josh. I could tell he was on the brink of having a full blown tantrum. I could feel the panicky, desperate energy of the parents, who were trying to calm him down. I noticed that the kid's two older sisters immediately went into "helping out" mode, offering him water and candy if he would calm down. How profoundly familiar it all was to me.

As the child behind us was spiraling into a full blown, screaming, kicking, hitting, spitting melt down, an elderly woman, who was standing in front of us, said to me, "You might want to explain what's happening to your daughters or else they might be scared." I turned to look at the woman and could not stifle a laugh. It actually (unfortunately) came out as a cross between a chortle and a snort.

"Oh, they have a brother who has autism." I explained. "My girls are used to this kind of thing."

One look at my girls proved that they were not concerned in the least about what was going on. They were not scared, intrigued, or interested in what was happening behind us in the least. To them, it was as if this type of thing happened all the time. This kid having a tantrum of grand proportions was as interesting as a slight change in the breeze, almost imperceptible, especially in light of the fact that the line to their first trip to the fair was finally beginning to move.

We quickly texted their dad so that he and Josh could join us. When they did, we who were in line, were funneled into a tented area where several lines became one small, slow moving line so that bags and backpacks could be checked. This set up seemed ridiculous to me. You take a bunch of special needs kids, most of whom have sensory issues, AND elderly people, and make them move very slowly through a crowded, smelly, loud tent area. Who thought of this? I was beginning to feel very anxious that it was going to be my son's turn to have a meltdown.

However, Josh (and most of the other folks with special needs around us) did great. I think everyone was just so excited to get in. You could smell the cotton candy and the fried food. You could see glimpses of the ferris wheel. You could hear the carnivally music . . . and the line was moving, albeit slowly.

As my attitude changed from mom-anxiety to appreciation for the moment, I noticed something else. Everyone in that tent, in that line looked so human, so natural, almost organic. It was not a beautiful, Hollywood crowd waiting to get into the county fair. It was mostly senior citizens and kids with special needs. Folks had globs of sunscreen that were not rubbed in fully and most of us were already sweaty. People don't go to the county fair to dress to impress or for success. You dress for comfort and to have a good time. You are likely to just look like who you are.

I had the thought that if I were to paint a picture of a line of people waiting to get into heaven, it might look a lot like this. I know that others have pictured it as people dressed in white with shiny wings or something but, in that moment, I thought that by the time you live your life and die and are waiting to get into heaven, your appearance would probably reflect the sufferings, the humanness, and the brokenness that you had experienced as a person on earth. It would be a time to cast aside the fashion, make up and false images that cover up our true selves. We would be free to just be who we were . . . but there would be no shame. Just excitement about what you are about to experience once you get in.

A Conversation with Hope and Liam

2011-07-30T20:34:00.001-07:00

The other day, I was driving in the van with Hope and a friend of hers, Liam, who had come over for a playdate. Anna was at another friend's house for a playdate. Hope, her friend, and I were on our way to go pick up Josh at his summer day camp.

Liam had never met Josh so I realized that I should probably interpret a bit about who Josh was so that he wouldn't be surprised, confused or scared upon meeting him. Here is how our conversation went:

Me: Liam, do you know what it means to have special needs?
Liam: No
Me: It means that some people's bodies or brains don't work the way that most people's do. Have you ever seen people like that?
Liam: Yeah. Some of the kids at my school are like that. They don't talk.
Me: Yes! I just wanted to let you know that Hope's brother is like that. His brain doesnt work as well as yours does. For example, he doesnt know how to speak very well yet. Josh is a little different from other kids his age. I just wanted to tell you that, okay Liam?

Liam: Ok.

(After a few minutes . . .)

Liam: Hope, does your brother annoy you?
Hope: No. My sister does but my brother never does.
Liam: Why not?
Hope: Because I love him the most. First is God, then Jesus, then my brother. Do you know about God?
Liam: Yes, I go to the Unitarian Universalist church where we have helping hands and healthy hearts. I go to the yellow room.
Hope: Well, I am in the big kids church now but my sister with the little kids. Want some gum?
Liam: I love gum. Sometimes I eat a whole bunch of it and I think about when I am going to poop it out.

Treasures within the conversations of kids are so easy to miss because they fly by so quickly and there is always so much going on. I just had to capture this one.

My Daughter Called Me a Sinner Today

2011-07-19T22:40:00.000-07:00

Nothing makes my five year old daughter, Hope, more angry than when Mommy yells at her brother Josh. Today, when I did not get Joshua's beloved frozen mangos for him fast enough (uh, because I was dealing with an OVERFLOWING TOILET!) Josh took a bowl full of bread crusts and crumbs from breakfast and threw it all over our living room rug.

"No Josh!" I yelled, loudly, . . . and then I took the Lord's name in vain. Yep. Completely lost it. I know he's got an intellectual disability and everything but, he did it on purpose and he did it to make me mad. He was successful. I went in full on "Oh no you don't" mode. I put the plunger away then I grabbed his hand and made him pick up every bread crust and crumb on that rug. Then I made him take a time out in his room where continued to scream his head off.

All the while, Hope was seething. I had told her that I could not deal with her until I was done with her brother. In fact, I think I actually had said, "Put yourself on hold, Hope. I'm dealing with your brother right now!" To my surprise, she did. Finally, after I got Josh into his room, I took her into her room to give her some focused attention. I took her in my lap, held her tight and then I told her that I could see that she was mad but that I was proud of her for having self control and not losing it as well.

Then she looked at me and said, "Mommy, you're a sinner."

Can you believe that? I mean, yes, I am and I totally was being a sinner but I didn't even know she knew that word. We don't do a lot of talking about being "sinners" with them, even though I do believe in the theological concept. We are more likely to talk about "needing God's help"or "not being able to be good on our own" etc. It was like a slap in the face (albeit from a small, five year old hand) to be called a "sinner".

Hope went on to tell me that she loved Josh most in the world (after Jesus and God) and that I was hurting someone who she loved very much. "I hate it when you hurt Joshie, Mommy. You were being mean! You should clean that stuff up yourself!"

Oh man. Just kill me, why don't ya? She's worse than my own conscience.

I regrouped and said, "Hope, you're right. I shouldn't have yelled at Josh like that. That was wrong and it probably scared everyone. Will you forgive me?" She nodded her head without looking at me.

I continued, "But Hope, Josh also needs to learn that doing things like that is not ok."

"Why, Mommy?"

"Well, Hope, I don't let you and your sister throw food on the carpet. Josh needs to learn that too. He needs to learn the rules too."

Hope thought about that for a minute.

Her reply, "Well, why can't those people who come to work with him from school do that for him?"

"Sweetie, he needs to learn to be independent. He can't have aides or his Mommy do everything for him. Everyone needs to know that there are some things that you can do and that you can't do. It's part of growing up, even for him."

That seemed to make enough sense for her. She scampered off my lap to play with her sister. I sat in that rocking chair for a few more minutes, reflecting on what I had just said to her. Oh, man. How am I going to teach my son what is ok and not ok to do? Lately, he's been venturing into new realms of sneaky or inappropriate behavior, like hoarding food in his room or unrolling and eating toilet paper. How do I teach Joshua to have appropriate behavior and that there are consequences for his inappropriate actions?

One thing I do know is that yelling is not the way. Just as with typically developing children, when I yell, all Josh can do is get upset and react to the fact that I am mad at him. I don't often lose it with Josh but when I do, he always responds by lots of crying and hitting himself. My adrenaline is surging and so is everyone else's. This is not a good formula for teaching life lessons.

The problem is that Hope is so right. I am a sinner. I may have better social skills or cognitive abilities but, ultimately, I am no more able to control my impulses on my own than Joshua is. Today I am very aware of my need for God's help and my inability to be good on my own.

Happy

2011-07-16T09:00:00.000-07:00

Joshua woke up this morning with a vision. He wanted to go out and sit in the car in the driveway. Nothing I could do would deter him from his goal; no video, no food, not the offer of snuggling. He wanted to go sit in the car. I even told him that I couldn't put music on in the car because that's been draining my car battery. No matter. The kid just wanted to sit in the car. He even eventually gave up on trying to drag me out there by pulling me by my hand and said, "I want to go to the car." Fine. I try to give him what he wants when he uses his words.

Now I am sitting in my front yard in my pajamas with an amazingly great, dark cup of coffee and my laptop. Joshua is experimenting with loud noises and gurgling sounds of different pitches. He is very, very happy. The loud noises and gurgling sounds are punctutated with bursts of uproarious laughter.

When Josh is happy, he is exceedingly happy. He is not trying to be happy. He is not putting on any act of being happy. He is not being happy in order to have any effect on anyone else. Sometimes, I think I experience being happy because I think I should or because I feel the need to be happy to balance out being sad. It's not that complicated for my son. He just is happy. I rarely know why. When something amuses or tickles him, he's just in it. And it comes out of him loudly. It feels simple and pure to me.

Here are a few pictures of Josh being happy. We often sit alone in the baby cry room during the Sunday service at church. I let him listen to music on my phone while I try to listen to the sermon on the video feed. At this particular moment, listening to the Black Eyed Peas is making Josh very happy.

My Kid is Such a Weirdo! (I can say this because I'm his Mom)

2011-07-11T19:40:00.000-07:00

(Warning, this post is a little bit gross. Yes, again.)

OK. I know that life with this kid is going to be . . . different. I get it -- he's on a different journey, different wavelength, different perspective etc. But you know what? Sometimes I just get a wave of feeling like, "My kid is so weird!"

For example, Josh likes to nibble on books, just the corners. When he's bored sitting on the toilet, he's been known to chew on a big wad of toilet paper. Strange, right? Recently, he's been throwing up, randomly. I know, in my mother's heart, that he isn't sick. He just throws up and seems fine afterward. He's also quite constipated.

Tonight, he and his dad were coming home early from a family picnic at our local park. He clearly has to go to the bathroom so they go straight to the bathroom. As they walk in, before Alex can do anything, Josh puts his hands down the back of his pants and pulls out (among other stuff) a long piece of videotape. I am not kidding you. It's a miracle that this boy is not dead. I mean, is the body really able to deal with stuff like this?

When I get home, Alex tells me this story and I'm just floored.

Seriously? My kid eats (and poops) video tape. Thomas the tank engine, specifically. I know because Alex recently found a destroyed VHS tape cassette thing and threw it away. Stranger still, Josh has been obsessed with asking to watch the Thomas video. It's taking everything in me to not say to him, "No, buddy, you can't watch Thomas BECAUSE YOU ATE IT!"

OK. Take deep breath, Susan. Life is strange and gross and unbelievable sometimes. Life with Josh is especially so.

Evening Prayers

2011-06-12T20:49:00.001-07:00

Right now my wonderful husband is reading to the girls and saying prayers with them. The girls clamor to get to go first, lifting up the very real concerns of their life. "Dear God, I pray for the boo boo on my leg and the line on my butt I got today when I was in the sun without sunscreen . . . " They pray for friends, for our upcoming car trip and for their stuffed animals. Then Alex prays for Joshua, that he would someday be completely healed.

It's a bittersweet thing to hear that. He's modeling for his little girls a belief in and a hope for miracles. I don't do that. I pray that Josh would use his words more and that he would complete his potty training. When I am alone, I pray for other things that I am desperate for, like that he would stop playing with himself in public places. But I don't pray for a complete healing. I just don't have the faith to even ask for that. But I am touched when other people do.

Hope and Anna are growing up with so many things being "normal". Praying for very real, up close miracles. Watching TV, oblivious while their older brother screams his head off under a big blanket right next to them. To them, their brother is their brother. The only brother that they have ever known. It's so amazing to me how much of their reality is shaped by what goes on in this house, in this household. I hope, with all my heart, that the imperfect love and the mustard seed of faith that we have and that we model to them is enough to give them a good start on a good life.

Joshua Learning How to Use His Words

2011-06-04T22:36:00.001-07:00

What’s that called

when you have no idea

that the person you are talking to

doesn’t know what’s in your head?

Joshua’s ever recurring statement

with no subject,

“I want it”

like everything with this kid

happens over and over again.

“I want it”

“I want some”

Repetition, perseveration

echolalia.

His response to, “Hi Joshua”

is “Hi Joshua”.

But today comes a surprise connection,

like the sun coming out in a constantly cloudy place.

At the end of an eternal effort

my beautiful son

decides to tell me what he wants

using his words.

“I want Barney video.”

I run to turn it on for him.

More about Anna and her Brother

2011-03-31T22:41:00.000-07:00

"Is Joshua always going to be special-needs?" Anna asked her question while looking out the window of the back seat of my van.

I wonder what is going on in that four year old brain of hers. How is she processing the life that she has been given to live and the family that God put her in.

"I think probably so, Anna. Why do you ask?"

"Well, is he going to get married?" (Anna has been thinking a lot about marriage and weddings. I began to be concerned about her thinking about such "big girl" stuff until she told me that she has decided that she is going to marry her Daddy.)

"I don't think that Joshua is going to get married, honey."

"Well, who will he live with when he grows up?"

"Probably Daddy and me," I replied.

"Aren't you and Daddy going to be really, really old by the time Joshua grows up?"

I can't remember how I replied but I was so struck by how such deep concerns bubble up in her developing little brain. She's so young. She still draws in stick figures. She's just now mastered recognizing the letters of the alphabet. She spends most of her time in the present, which is filled with immediate impulses and gratification.

Yet, somewhere in there, Anna wonders about her brother and his future.

Everyday there are reminders to me that Anna and her older sister, Hope are being shaped, from the very ground up, by the presence of this different little boy. I was looking through recent pictures this week and noticed that in this one (above), Anna is helping her brother to look at the camera.

Earlier this week we were at Hope's school picking up Hope and another boy who I was giving a ride home. Josh was in the back of the van screaming his head off for no apparent reason. The boy (a very polite and nice kid) had his fingers in his ears and did not look like he was looking forward to sitting in the back with Josh. The girls were already strapped into their booster seats in the middle row. While I put the other boy's backpack into the very back of the van, I saw Anna unstrap herself, pick up her booster, and settle herself into the back seat with Josh. The boy that I was giving a ride to seemed mighty relieved. Later, I asked Anna about why she had done it, whether it was out of concern for the other boy or for Josh. Anna said, "Because I love Joshie, Mommy. He's very special to me."

Oh man. Such sweetness. . . but do I start saving now for therapy for this sweet little girl who feels responsible for her brother at age 4?

Helping Others Get to Know Josh

2011-02-08T21:06:00.000-08:00

When I turned 40 years old (two years ago), I did some reflection about some goals for my 40's. What were my goals for this decade of my life? What are the most important things that I really want to have happen in the next 10 years?

I can't even remember what goals #2-5 were (probably something about losing weight and working out more-- oh well). Goal #1 was to live and arrange our lives so that we had a good number of people who knew Joshua on a deeper level.

It's so easy to miss out on getting to know Josh. He generally doesn't communicate with words. His auditory sensitivities make many social events impossible for him. He has a rather packed schedule of necessary therapies and medical appointments. He doesn't really care about socializing. His favorite thing in the world is to sit in his room and listen to music by himself. His disabilities are complex. Yes, some people remember that he has autism but only a handful know what Septo-Optic Dysplasia even is or remember that he has this primary diagnosis. There is something so inherently isolating about living with disabilities.

But I have a deep desire for people to, get to know my son. He is such a beautiful little soul. He is an incredible source of joy. He has so much to teach. You just have to have eyes to see and ears to hear. Surely, the blessing of who Joshua is is not just meant for our nuclear family?

So I've kept this goal in my heart and in my prayers-- that by the time I'm 50 years old (and Josh would be 16!) there would be a number of people, and families who have gotten to know some of the complexity, beauty and challenge of who Joshua is.

One of the things we've started to do as a family is to vacation with a couple of other families. My husband has a friend from college who generously loans us his vacation home several times a year so for the past couple of years, we go up to this cabin in the mountains with one family on MLK weekend and another family for a week during the summer.

A few weeks ago, we went up for an extended weekend with one family with whom we are long time friends. Their eldest son, Ben, is 12 and a very sweet kid. Ben has always had a special willingness to hang out with Josh. A few years ago, during an Easter Egg hunt in their backyard, Ben walked around holding Joshua's hand and helping him to find eggs. During our weekend at the cabin, we went for a little hike and, without prompting, Ben took Josh's hand when he sensed that Josh was feeling visually insecure about walking across a bridge. Walking behind them, I noticed this, smiled, and snapped a picture.

The other family that we go to the cabin with also has a son who is twelve, Mark. Mark's mom told me a story the other day that touched me. Apparently, a few of Mark's friends from school were talking about something or someone and saying that it was "retarded". Mark spoke up and told them, "Hey, you shouldn't use that word. Our family has a friend who has special needs and they would not appreciate you using that word like that." I mean, who does this when you are a twelve year old boy? Did I ever speak up for anyone else at all when I was twelve? I don't think so.

Somehow, my son's very presence is teaching people about advocacy and about looking out for unexpressed needs. I love this. How will their experience of knowing Joshua help these two young men to become better students, husbands, dads, bosses or church members? How will being around Josh give them a category for caring for those who are different from the norm?

I also love it when people (and especially other kids) ask me questions about Joshua, his life, and even his disabilities. I like it because it tells me that they see him and are wondering about him. I appreciate the initiative to move a little bit into his/ our world. I feel included, known, and loved.

Sickness Sanity?

2011-02-07T07:58:00.000-08:00

Hello friends! I'm back after a brief hiatus, primarily due to sickness in our household. Here's my question of the day: How do you stay sane/ happy/ energized/ motivated when you are dealing with week after week of sickness?

Right after Christmas, three of us got lice (thanks to an outbreak at my daughter's preschool). Soon after dealing with that, I got sick, the girls got sick, my husband got sick (and has had a horrible cough that kept him up at night for three weeks). Josh has had a stomach bug three times since the new year started (and it's only mid-February)!

I woke up this morning and realized that I might be going insane. I spent most of the weekend at home monitoring Joshua, who had a fever. Due to his medical issues, if we can't control his fever or vomiting then we have to take him to the emergency room to avoid a potentially deadly adrenal crisis. This is somewhat stressful.

Now, I am sitting here at my desk, having sent all three kids off to school . . . but I'm feeling a bit PTSD. Who knows when the next round is going to hit. Why schedule anything at all when all routine is going to go out the window again because someone is going to have to be taken care of all day?

SO, someone out there give me some advice. How does a modern mom weather the winter cold blues with emotional and spiritual strength?

Josh and the Homeless Man at Church

2010-12-14T19:58:00.000-08:00

My son has a ministry to people who hang out in the back of the room during our Sunday Morning service. Our church meets either in a community center theater or a gym, depending on the week. Josh prefers the gym as there is more space for him to walk around in circles as he enjoys the musical worship. Josh is so happy and in his element when he is experiencing the music of the worship band (and congregation singing) at church. In fact there are a few other autistic kids in our church who do odd but sweet things during the worship service at our church. I think that most people have gotten used to their (mostly happy) noises. Some have even told me that they are blessed by watching Josh experience God.

Josh has an aide most weeks, in case he gets overwhelmed or needs to walk around outside. This past week, his aide told me a memorable and unusual story. After walking in circles for a while, Josh noticed a man sitting on the floor by the door and decided to go sit in his lap. The man was a bit startled so Josh got back up and resumed his solitary little dance. Later, after the service, the man approached Josh and interacted with him a bit. He told the woman who was his aide that morning that he was very touched by Josh's initiative, by who Josh is and by how he was experiencing God. Apparently, this man is homeless and is currently living in his truck. Before his life took some difficult turns, he was married to a woman who was related to a child with Aspergers Syndrome (a diagnosis which is on the autism spectrum). Although he no longer related to this child since his divorce, the connection seemed to stir up deep memories for him. He shared some more about his life with the woman who was Josh's aide that week then thanked her for listening. "I guess I just needed to talk," he said. He told her that he would see her (and Josh) next week again at church.

I've often wondered what the purpose is to Joshua's life. He will not contribute to this world by being a lawyer, an academic or a doctor (the three options that most Asian-Americans are encouraged to consider). He will not make a lot of money. He will not offer insights, wisdom or interpretations to his community. What he will do, however, is to have very simple but human connections with people and, hopefully, will touch them with who he is. In this way, I believe that God has a good and useful plan for his life. I feel honored to get to be a part of that.

In Praise of Birth Moms

2010-12-04T20:44:00.000-08:00

Last week we woke up and found that we had been sent a surprising email. Joshua's birth mom (I'll call her Andrea) emailed us after 7 years of not being in touch. We were thrilled to hear from her.

I posted something brief about it on Facebook and it was interesting to me to hear people's slight discomfort with open adoption even through their comments on my quick post. "Well, I'm happy if you're happy" said one Facebook friend. "You have such a big heart" said another. I have a feeling that it's quite odd for most people for adoptive parents to be in touch with birth parents.

Alex and I love having connection with our two adopted children's birth parents. Once we learned what "open adoptions" could be about, we were all for it. We want our children to know that adoption is a part of their life stories not because they were abandoned but because they were born of amazingly courageous young women who made a choice in love. These women came to decide that placing their babies for adoption would be the best option for the child and for them. We want to know and bless the cultural backgrounds of our children as much as possible. We appreciate having as much medical history as possible. Open adoption has been a tremendous blessing to our lives.

For Hope that means that we get visits about three or four times a year from her birth mom. We've met her entire nuclear family and some of her friends. She is an amazing person; lovely, gracious and mature. About a month ago for her last visit, Hope suggested that her birth mom might want to take just her out to ice cream for a "special time". Anna asked why she couldn't come along. Hope told her, "Because she's my birth mom so I get special time with her." Anna declared that it was not fair that she didn't get special time with her birth mom. I reminded her that I was her birth mom and that she often gets special time with me. I was informed that I don't count because I am the "regular mom" and that she wanted another birth mom that doesn't live in our house (presumably so that this person could take her out to ice cream).

We were in contact with Joshua's birth mother for about a year after he was born and placed with us. We even drove out to her town (about 2 hours from ours) to pick her up so that she could come and see where we lived and where Joshua was going to grow up. When Joshua was hospitalized and diagnosed at 2 months old, we were in phone contact with her then email contact. We told her everything we knew about his diagnosis (SOD) by that first year then we lost contact with her. (She stopped responding to our calls and emails.) Our adoption social worker told us that it is not uncommon for young birth mothers to need to take time away from contact with the adoptive families. We respected that but were sad to not be able to share about Joshua's life with someone else who loved him very much.

This is some of the background to why we were so thrilled to hear from Andrea. She (along with Hope's birth mother) is one of our heroes in life. She became pregnant at 15 years old and had no family support in her life. She was living with an older brother, who mostly spent time working in a city a couple of hours away. Andrea broke up with her boyfriend immediately and did not tell anyone about the pregnancy (including the boyfriend/ birth father, who did not know about the baby until he was born and until he was asked to sign papers terminating his parental rights). For some reason, despite only having information about abortion as a possible response to an unplanned pregnancy, Andrea felt that it would be wrong for her to abort the baby so she kept the pregnancy. She wore big sweatshirts through the end of the school year then mostly hung out at home by herself during the summer (Josh was born in August). When she went into labor, she mostly labored at home then took the bus to the hospital. She gave birth 30 minutes after she arrived. Then she asked the nurses to help her to find options for adoption.

Although Hope's birth mother's story is very different, she shared Andrea's experience of feeling immense external pressure to abort but also having a strong internal feeling that this was not what she should do. Both of these young women walked through the long months of having a precious baby form inside of them. Both carried through with the conviction and choice to allow someone else to raise that child. I have no idea what kind of courage and love it must have taken to make this choice but I respect it so much.

Through adopting Hope and Joshua, our eyes have been opened to the reality that there are many, many women out there who are birth moms. They have a huge part of their lives that few people may know about and few might affirm. One day, we shared Joshua's story with a speech therapist who was at our house for a home visit. She listened carefully then she shared with us that she had given birth to a child over 20 years before and had placed her for adoption. Ironically, she and her husband struggled with infertility and never had children. As she told us her story, she wept openly, her grief still very much with her, along with her love for the baby that she had so many years before.

There is so much more to say about Joshua and Hope's birth mothers but the main thing that I have on my heart today is this: Thank you. I treasure that suffering and sacrifice that you went through so that these beautiful, precious children can exist. May God honor what you have done and who you are.

The Dementor Moment

2010-11-28T18:40:00.000-08:00

Parenting young children is almost always an exceedingly tiring experience. However, every now and then, a parent will encounter a situation that sucks every little bit of life force from your body and soul instantaneously. My husband and I refer to it as a "dementor moment", named after the magical creatures in the Harry Potter series who drain people of all positive emotions and leave them with only darkness and despair.

I had a dementor moment this very evening. My husband was working all day in his office preparing for an evening meeting. I was in full "get the kids to bed early because I'm already pretty tired" mode. Two thirds of the children had been fed and I had some good momentum with casting vision for a nice bath when my son threw up all over himself and me. Every ounce of energy immediately left me. My chin plunged to my chest in defeat.

When Josh throws up, it means that we have to be super watchful for how he's doing. We triple one of his meds (specifically, the hormone that helps him to fight illness) and, if he can't keep it down, we have to give him a big, fat emergency shot and then immediately take him to the emergency room to get more meds intravenously. We are never allowed to take Josh very far from a hospital with an emergency room. As you can imagine, we have to be pretty vigilant when Josh gets sick.

I left the mess that was my son and ran for the phone to call Alex. "Josh threw up. I need back up. Come home now." Thankfully, my husband's office is only 10 minutes away and he registered the level of need in my voice. He came through the front door in 8 minutes and immediately got to work on moving the girls along their evening routine (while throwing dishes into dishwasher and making the kitchen a little less overwhelmingly chaotic). I put myself and my son back together again, praying as I went. Within 10 minutes, the girls finished their dinner and were headed toward their bath. I sent Alex back out the door to finish prepping for his meeting and I was able to go on with the rest of the evening at home.

Sometimes, all that is needed is some quick back up and the good sense to ask for it. The situation was not really despair-worthy but I just didn't have it for that moment. I have learned that you can either try to slog it out yourself or you can try to ask for help-- from a friend, from my husband, from God, from anyone on Facebook, anyone. It is amazing to me how much just a little bit of support goes toward being able to make it. In my opinion, Special Needs Parenting Rule #1 is "Ask for Help".

Birthday Party Conversations

2010-11-22T12:37:00.000-08:00

This past weekend, Joshua's sisters, Hope and Anna went to a close friend's birthday party. Apparently there were 12 little girls ages 4-6. At one point, the girls were sitting around and someone realized that everyone there had a brother! The host of the party suggested that they all go around and share their own name and their brother's name. When it came around to the older, 6 year old girls, there was additional commentary about how annoying their brothers were. Soon, everyone was chiming in declaring that their brothers were also annoying; pushing them around, taking their stuff etc.

But my Anna said, "My brother's name is Josh and he's not annoying. He doesn't know how to be annoying because he has special needs!" The birthday girl's mom, asked a few questions about what "special needs" means and they embarked on a whole group conversation about what it means to have special needs and the different kinds of special needs there are, physical, vision, etc. Anna told me all about this conversation while we were brushing her teeth later that night. I so wish I had been there to soak up the sweetness and beauty of the moment.

Who is this Stranger in My House?

2010-11-13T21:00:00.000-08:00

For the past several weeks, Joshua has woken up in the morning and has walked himself to the bathroom to pull down his pants and take a morning pee. Now, for most typical 8 year olds, this is not a big deal. This is a huge deal for mine.

Although Josh can do much of the bathroom routine by himself, he has never taken responsibility to get himself there at the right time. For his whole life he has seemed utterly happy to just go in his pants if we don't take him. I cannot tell you how many times I have cleaned up the accidents that this child has had.

Because of Joshua's hormone deficiencies, he is usually running out of urine condensing hormone by morning time. This means that it is very difficult for him to control his output, especially at that time. Josh always goes to bed with a nighttime diaper, even though he has worn underwear in the daytime for several years now. I have never imagined that we would make progress in his being potty trained at night and, honestly, it has not been at the top of my list of goals to work on for Josh.

The nighttime diaper is a pretty big deal in the world of caring for Josh. If you don't put it on right or, God forbid, if you don't give him the right dose of evening pills, you can wind up with a bed that is completely soaked. We have thrown many, many, many yucky pillows away.

However, for some reason, lately Josh has decided to not pee in his diaper at night or in the morning in bed. And he has decided to take responsibility for getting himself to the bathroom in the morning. The first time he did this, I seriously thought that there was a stranger in my house. I could tell that the person who walked by my slightly open bedroom door was taller and heavier than my girls. Who could it be? I had no category for Joshua getting himself out of bed in the morning. Immediately, I jumped out of bed to see what was going on to find him calmly pulling his diaper and pajamas back up then washing his hands. "Want toast" he said to me with utter nonchalance.

Even now, weeks into this pattern, I'm shocked and surprised every time this happens in the morning. I take a minute to be thankful and amazed then I run to the kitchen to get a reinforcing chocolate chip and jam it into his happy little mouth saying, "Josh, if you take yourself to the bathroom, you get a . . . " "Choc-lit" is his reply.

I'm not sure when Josh will be fully potty trained; when I don't have to mentally calculate how long it's been since he went to the bathroom and then prompt him to go. He's not totally trustworthy yet. But I would like to take a minute to note that my son is learning to take responsibility for his morning pee and, for that small but significant thing, I rejoice!

Greatness

2010-10-28T15:24:00.000-07:00

Last week, miracle of miracles, I went and saw two different films at the cinema. A plethora of evenings that my husband go to be out doing fun, sports related things prompted me to organize a ladies night out. Then a few days later my husband and I had a scheduled "date in the middle of the day because that's when we could arrange childcare" so we sneaked in a matinee.

The first movie that I saw was "Secretariat", which is about the horse that won the triple crown in 1973 and his owner, Penny Tweedy. The second one was "The Social Network", which is about Facebook founder Mark Zuckerberg. First of all, how wonderful it is to be immersed in good stories. They say that the body craves food and water, the heart craves love and the mind craves stories. I resonate wholeheartedly with that. Nevermind special effects or sex and violence, what I crave is to escape through a good story.

I also found that both movies made me think about the worth and importance of my life because they were about "greatness". The pursuit of "greatness" sure does make for a good story.

Secretariat was the only non-human to be listed in the Sports Illustrated list of 100 greatest athletes of the 20th century. The story of Penny Tweedy's is inspiring as well; a regular housewife who dared to reach for the stars. She defied expectations and social conventions to take that horse where no one dreamed he could go. Disney geared the storyline to inspire the movie goer with Mrs. Tweedy's tenacity and inner sense of fight. According to the movie, she was an inspiration to her own teenage daughter, a role model for daring to go for what is deep inside of you. The Facebook/ Mark Zuckerberg story is an amazing one of it's own. This man is only 26 years old, is worth almost 7 billion dollars and is a major culture changer of our era.

Personally, I felt two things. First, I was inspired to look at my life and ask, "How do I still need to be a person of dreams?" I think that there is such a temptation for me to just live my practical, daily life and not hope to be a part of something greater. Of course, not everyone is a world history maker or a culture changer or a millionaire/ billionaire but we all have to have a greater vision for something more, something that engages you to the core or else you begin to die a slow death.

Secondly, I felt sobered by the "cost of greatness". Penny Tweedy became estranged with her husband in the midst of her pursuit of the triple crown for her horse. According to "The Social Contract", Mark Zuckerberg was, well, not a very nice human being and really screwed over his best friend. I know that it's not always this way. Not every great person in the history of this world had a failed marriage or was a bad friend. However, I am aware on a deep level that in order to be great in this world, you have to give up a lot of the best things in a normal person's life, family normalcy, healthy friendships, and quality time for both.

I am thinking about how tempting it is to want to be great in the eyes of people. Despite the costs that these people paid to be great, it is so darn attractive. Who doesn't want to be a super-successful, influential, respected person? Who isn't drawn to be warmed by that fire? I am. If I am honest, I have to admit that I love the idea of being famous or powerful or influential. Watching these movies made me realize how powerfully attractive it is to me.

Ironically, at church these days, we've been going through a part of the Bible that is also about "greatness". In Mark 10:43-45 Jesus says, "Whoever wishes to become great among you must be your servant, and whoever wishes to be first among you must be slave of all. For the Son of Man came not to be served but to serve, and to give his life as a ransom for many." Boy, this really turns the whole "dream about being a billionaire" thing on it's head.

In the end, I do want to be great but I think that I believe Jesus that being great by becoming a servant and pouring out your life is a better path to ultimate, lasting, and true greatness than making a lot of money or making a name for yourself. This is a good thing for me because I seem to have found myself with three little creatures with cavernous needs whom I must serve (sometimes it feels like be a slave to) everyday. One of those little people is someone who will probably never outgrow his need to be taken care of in very basic ways. Because I am a parent of a child with special needs, my life path is one of a servant. My hope and my prayer is that, as I walk this path, my heart stays in a place of really seeking to be great by being a true servant rather than yearning for greatness in some other way.

My Child is Cold

2010-10-22T22:49:00.001-07:00

"Look Mommy, it's raining!" My girls were delighted to see true rain really coming down all of a sudden. Of course, it was the first time in a long time that I hadn't checked the weather report. The rest of this week had been overcast in the morning but warm and sunny by the mid-morning or afternoon.

I was hit with the realization that I sent Josh to school today in shorts, a t-shirt and a very thin sweater. Not only did it start to rain soon after I got him on the bus, but I realized that his class was planning on going to a field trip to a pumpkin patch farm this morning. Attached to the permission slip that I had signed earlier in the week was the suggestion to dress your child warmly and to wear comfortable shoes.

I panicked. I sent my son off to school and off to a field trip where he is going to be cold, wet, and uncomfortable. Oh my God. What kind of a mother am I?

Thinking about my child being out there somewhere underdressed and cold hits a "Asian mom/ your children must never be cold" nerve in me. Do you ever notice how Asian parents or grandparents always overdress their kids? We have a park down the street where a bunch of Chinese grandparents gather in the daytime with the small grandchildren that they are taking care of. Those children are always layered to the hilt. Vests, scarves, gloves, thick jackets--- all on a moderately warm day!

It must be somewhat connected to a shame issue. I do feel some worry that people are going to judge me for not having the good sense to properly dress my child. Yes, this can be difficult since I live in a part of the country that has a million different micro-climates and big temperature fluctuations throughout the day. But nevertheless, I still feel the pressure to get it right. . . especially since my child happens to not be able to say, "Hey, I'm cold".

I called his teacher who said, "Yeah, we were just looking through the lost and found to see if there was something else he could wear." (More shame filling my innermost soul.) Apparently, they were still going to go to the field trip despite the rain because the bus was already there and the rain was supposed to burn off by mid-morning. They were planning on leaving in five minutes so there was no time for me to rush over to his school.

I sprang into action. No son of mine is going to walk around a "%#*@! pumpkin patch cold. Not today. Not ever. "Girls, get dressed" I commanded. In less than 5 minutes, I got my two girls and myself dressed, brushed hair and teeth for all three of us and snapped them into their carseats. We were at that pumpkin patch at least 10 minutes before the school bus was.

When they finally arrived,the sun began to come out and it turned out to be a lovely day. My son, however, walked around wearing four layers of clothes all morning.

So what was my deal? Why was I so frazzled this morning? I'm not sure but I have a feeling that it has to do with the fact that there is so much about Joshua that I cannot control. No matter how many exercises I do with him, there are so many skills that he just cannot master. This makes it very hard to feel like I am doing my job as a mom. But there are a few things that I can do and it works. I dress him appropriately and he's not too hot and not too cold. Realizing this (and writing about it) helps me to have more grace on myself.

Two Encouraging Vignettes

2010-10-12T20:09:00.000-07:00

Yesterday my girls did two things that were so sweet and memorable that I just have to write them down.

I was dropping Hope off at her school in the morning. Because Josh and Anna did not have school, they were both with me. We were a big part of adding to the congestion in the hallway where Hope was hanging up her backpack in her cubby. Another little girl was standing next to Hope waiting for her turn at her cubby. She stood looking at Joshua, perhaps noticing that he was different. I initiated by saying to her, "Annie, this is Joshua, Hope's brother." Hope immediately jumped and said, in the same happy tone that she might use to talk about going to get ice cream, "He has special needs!"

Annie's dad, who was also standing there in the hallway commented, "Kids are so great." Indeed, they are. I savor the lack of shame or embarrassment in Hope about her brother. She is at a beautiful stage of just loving her brother and wanting others to know all about him. Hope is both exuberant and inclusive. To her, Joshua being different is not necessarily a bad thing. It's just who he is; who he always has been to her. I love that.

Later that afternoon, Anna spent a long time creating an art project using little beads. She has a big bucket of multicolored little tube shaped beads which she puts on a star or heart shaped board. When the child is done, a parent is supposed to iron it so that the plastic beads sort of melt into each other and you get a multicolored plastic thingy, which the girls absolutely treasure. I love this craft because it occupies them for a very, very long time and they are always happy with the results.

Anna had been happily working on this for almost 20 minutes (which is a long time in the world of a preschooler). She left her project alone for a few minutes to go to the bathroom. While she was gone, Josh sat at the table and accidentally knocked the project, and all of the little beads, over. Anna was understandably upset when she saw what he had done and let out a cry of disappointment and sadness. What surprised me, though, was what she said, soon after her discovery. She said, "Well, it's okay. He doesn't know. I can do it over again." Anna is not yet 4 years old. How is it that she was able to set aside her emotions and sense of being wronged because she has perspective on the capacities (or lack of capacities) of her brother? How was she able to have such grace on him when she had to pay such a cost for who he is? Maybe her dad and I are modeling some good things. Maybe she is just a very sweet soul (hmmm . . . sometimes). Maybe God is at work inside of her. I am guessing that it will not always be this way but, for now, I treasure these little snapshots of grace and love.

Anna's Bad Day at School

2010-09-21T20:39:00.000-07:00

I asked my 3 year old daughter how her day at preschool was and her beautiful eyes started to well up with big, fat tears. "I had a BAD day!" she said.

"Why sweetie?"

"Sheri said that Joshie is weird and yucky!" My heart dropped. Ok, here we go. We're officially beginning the process of the girls dealing with how other people see and respond to their brother. Josh sometimes comes with me (if he misses his bus) when I drop her off at her school since his school is nearby. If he comes into the classroom as I sign Anna in, he usually wanders around walking in circles, flapping his hands and making his usual humming noises. We are immune to this and it's all good to us as long as he is not crying or screaming. Sheri is a cherubic blonde haired, blue eyed, gorgeous little child with lots of confidence and opinions. Her mom has been initiating for her to have a play date with Anna.

"Oh, sweetie. Why do you think she said that?" I asked.

Anna responded with the saddest face you've ever seen, "Sheri said that Josh makes funny noises and he flaps his hands."

Hearing this completely breaks my heart but I try to be present and help her to process her experience.

"Anna, what did you say to her?"

"I told her that was not very nice because he's my brother and he's very special to me!"

I give her a big hug and tell her that I was so sorry. I try my best to interpret that it's sometimes hard and confusing for people to understand people with special needs. As I am comforting my little girl, I realize that by being a part of our family, she's on a special journey of being an interpreter about the special needs world to the typically developing world. Not only was she born into the burden/ opportunity of being a bridge between the white and Asian worlds, and the churchy and unchurchy world, but between the disabled and typical communities as well. Anna will be a bridge person and she will have the perspective, gifts, joys, sufferings and frustrations of being a bridge person. I know this well.

I hope that this builds and strengthens her soul and makes her a strong and hopeful person. I hope that she can speak up for the rest of her life just as she spoke up today. I hope that she will let herself be comforted when she feels the hurt of other people's ignorance.

I pull out of these deep thoughts and ask her, "Does that mean that you don't want to have a play date with Sheri anymore?" Her response, "Oh, no. I still want to have a play date with her." God bless her little resilient and forgiving heart. I hope I can be more like that when I experience mean people.

Poo Poo in Paradise

2010-09-04T18:52:00.001-07:00

Well, it happened. The thing that I've been dreading for almost four years happened yesterday on a lovely, end of the summer evening with friends. We had been invited to a barbeque at a nearby neighborhood swim club that our friends belong to. It was Friday of Labor day weekend. Did we want to bring the kids over for a swim and a potluck dinner? Actually, yes! It is difficult for our family to socialize together with other families because of the Joshua factor. Barbequing at a pool is a perfect setting to give it a try. Swimming is one of the things that all of our kids, including Josh, love to do. The adults might even get some conversation in over a glass of wine while grilling some bacon wrapped pork chops.

It began as an unbelievably lovely time. The day had been relaxingly, but not exhaustingly, warm. All of the kids were having a great time in the pool. There were two lifeguards on duty and, because it was later in the day, we were the only people at the rather large pool. I was able to relax and not be as vigilant about watching the kids constantly. I did keep an eye on them but I was also enjoying chatting with my friend. I was amazed at how all of my kids have really grown in their swim skills over the summer. Joshua, as usual, was thrilled by the sensory stimulation of the water. He was all smiles and laughter, playing by himself in the shallow end.

Dinner was almost ready when my friend said to me, "Susan, the color of the water around Joshua . . . " Oh God. I knew at once that Josh had pooped. I was afraid that this might happen so I had been asking him all afternoon, "Josh, do you need to go potty?" He had replied with a resounding, and even slightly offended, "No!" Alas, just asking had not been enough. I pulled him out right away, wrapped a towel around him and marched him to the bathroom while my friend went to go tell the lifeguard, who got everyone else out of the pool. Cleaning him up in the shower was a feat of indescribable grossness. After a long time of cleaning up, we emerged.

It struck me that Josh felt no embarrassment. Or if he did, he had no way of showing it. He just seemed relieved, maybe refreshed even, in a fine mood and ready for dinner. What must it be like to be that free/ devoid of social shame?

Everyone was very nice and understanding. Even the kids (age 6-16) of our host family seemed empathetic and full of grace. The only unkind presence was the voice in my own head.

My husband had asked me, when he checked on me in the bathroom during the clean up phase of the evening, "How are you doing? Are you feeling ashamed?" Honestly, I didn't feel ashamed. What I felt was waves of massive anxiety, the dark scenario that we would be experiencing these same things when Josh was 30. That he'll never be potty trained. That, someday, I will miss some really important, verbally unexpressed cue from this mysterious little guy and something really bad will happen. I guess that's where my struggling heart goes. The darkest scenario of all, I realized, is that I would miss something and Josh would die, like the other little girl we knew of, who also had Septo-Optic Dysplasia, who died after getting the flu. I woke up this morning with even more anxious thoughts, which stayed with me for the rest of the day.

The thing that burst the anxiety bubble for me was later this afternoon when I tried to get a post-nap Josh to drink some water. He did but then promptly threw up all over his bed, himself, and me. It was completely ridiculous. I just had to laugh. Really? Is this really happening?

In that moment, I realized how absurd it is to try to be in control of this person's life. UNEXPECTED THINGS ARE GOING TO HAPPEN. Crazy, silly, mortifying, embarrassing, difficult, challenging, memorable, smelly, messy, grace-needing things are going to happen. It's just a given with Josh. Here is a child who is an adventure. Life with Josh is going to be really, really different and I can't control that. I can try to pretend that I am in charge of nothing bad ever happening or I can buckle up and ride the ride.

I Love our Ophthalmologist

2010-08-27T17:48:00.000-07:00

I love our ophthalmologist. Today my husband took Josh for his half yearly visit to his pediatric ophthalmologist. I needed a break from trying to keep Josh occupied during the unavoidably long waits in the waiting room (our doc is a very popular guy at a top teaching hospital). I don't usually mind the wait, though. Our ophthalmologist is a phenomenal guy.

When Josh was first diagnosed (and back when we thought that his visual impairment issues would be his primary disability) we went to another doctor, who practiced at a hospital closest to us. This doctor did not have a very good "bedside manner". She exuded very little patience with actual people and a lot of fascination with "cases". I felt like she never actually looked at me. It was a strange experience of going to an eye doctor and not being seen. She was one of those people that made you wonder why certain people go into pediatrics. She was so clearly not a kid/ baby person. She wasn't great with stressed out parents either. Maybe she felt like little kid eyes would be more challenging to deal with? During our second visit with her, Joshua (who had really bad reflux at that time) threw up all over her and me in a massive fountain or semidigested formula. It was our last visit with this particular doctor.

Anyhow, our current doctor has the most amazing manner and tone. In addition to being a well-known, widely respected teaching physician, he has a way of making you feel like you (as a parent of a child with special needs) are doing a really good job with the challenges that you face. He asks lots of questions, really listens well and always finds a way to affirm us personally. (Thus, the long waits in the waiting room?) I always go away from these appointments encouraged. And this is not always the case with the other billions of doctors that we see for our son.

Apparently, today our beloved doctor asked how we were doing as parents with all that we have to handle. "Do you guys get away at all?" he asked my husband. My husband responded that we are trying to get back to regular date nights but we haven't gone away on an overnight in a while. Doctor Awesome responded by gently encouraging my husband to make it happen, which he was very open to.

This afternoon, when I asked my husband how the appointment went, he said, "I want to be adopted by our ophthalmologist. I felt so cared for. Our son got his eyes checked by a world class specialist while I was urged to look at my the health of my marriage and my initiative in it!"

What's not to love about that?

The Benefits of Having a Non-Verbal Child

2010-06-30T21:22:00.000-07:00

The other day I had to take two long drives in one day. One of those was with a car full of people. The other was with Joshua. I realized that day that it is so nice to go on drives with Josh.

This kid loves riding in the car. I think that he motion of a moving vehicle gives him sensory input that he craves. If he can listen to music that he likes, it's even better. If he has a big apple to gnaw on while listening to music (with no noisy little sisters in the car) then I'm almost guaranteed to have an extremely happy kid. Josh will just sit in his car seat in the back of my minivan, happily, quietly for a long time on a long car ride. The blessed silence is only punctuated by sudden random bursts of laughter and other sounds of joy and contentment. I feel like there is a sense of "freedom to just be" that I rarely have in my life and I am led into it by Josh. I am free to think my own thoughts or just space out. It's wonderful. It's like a sanctuary.

This is in contrast to being in the car with my two girls, age 3 and 4. They squabble. They comment about every possible thing that they see. ("Look Mama, a red car!") They ask questions that make me have to think a lot about how to respond. ("Mama, how old am I going to be when I go to heaven to see Papa?" or "Why did God put nails in Jesus' hands?") Car rides with the girls are on a spectrum of delightful to exhausting.

Of course, if I had a choice, I would prefer to have Joshua be able to fight with his sisters. It would be a dream to have him harass them as an older brother should. I would put up with a million irritating questions from him if I could. I yearn from the bottom of my heart to communicate more deeply with my son. However, this is not the hand that we've been dealt. Josh rarely uses his words, except to ask for things that he wants . . . and we are still working on that.

So, for now, I am learning to appreciate the upsides of who my son is. I do believe that it's a critical discipline to "count one's blessings". So here I am counting one of them. I love to ride in the car with my son.

My Dream from God

2010-05-30T16:49:00.000-07:00

Last night I had the most vivid dream that I've had in a long time. I was on some sort of "American Idol" type of show as a contestant. There was a whole production set up with producers, make up people and tech assistants swarming around. I was getting prepped and it was almost my turn. Suddenly I was hit with the (true to real life) realization that I CANNOT SING. I am not just being humble. I think I am the only non-musical Korean-American in the whole country. I do not play any instruments, I can barely plunk anything out on the piano. I am not even good at listening to music. I, seriously, do not have a good singing voice. I do not even karaoke, ever. I cannot imagine having a voice that’s good enough for public consumption in any way. It's really not my thing. Am I getting my point across?

So there I was, waiting to go on. I was desperately trying to think through all of the songs that I know to find one that I could sing in a decent range (I think I came up with a kid song from Barney or Raffi or something). I woke up really nervous.

I also woke up being tackled by two of my three children so I promptly forgot the dream. However, the dream came back to my mind in vivid colors during the musical worship portion of our Sunday morning church service later this morning. I asked God, "What was that dream all about?" Here was His response:

"You think that you have a bad singing voice but to me, your voice, especially when you are worshiping me in song, is the sweetest, most beautiful voice possible, because of who you are to me. You are my precious daughter and everything that you do in love, I love. And, by the way, this is how I feel about your parenting. You think of yourself as a mediocre, struggling, “this is not really my best area of talent” mom but I see your mothering as delightful and gifted. You see all of the ways that you don’t hit the right notes, but I receive what you do for the children that I created as a work of art.”

So how’s that for affirmation? God thinks that I rock as a mom. I know, in my heart, that it’s only partly true but, hey, I’ll take what I can get.

A Bit of a Rant

2010-05-01T21:44:00.000-07:00

Warning! What follows is the frustrated rantings of a very, very, very tired mother of a kid with special needs.

My question for today. Is it too much to ask that a child who is almost 8 years old would take responsibility for his own toileting? Is it too much to ask that this child not poop in bed and wipe that poop all over his room?

In my current, not completely rational state, I feel strongly that the hundreds of non-insured dollars poured into behavioral psychologists and autism specializing pediatricians should result in some strategy that leads my child to be potty trained.

My emotions tell me that the billions of prayers that I've prayed to a God, who I know cares about me, should have some sort of result along the lines of not having yucky poop accidents.

My thoughts flit around the fear that I will be cleaning up after my son in this way when he is 30 (though even in my exhausted state I know that I cannot go there tonight). Have some thought discipline, girl.

Well, the laundry is going. The room has been cleaned. The shower has been cloroxed. I have vented here on my blog. The child has been kissed and sent to bed. My emotions are settling down and perspective is seeping into my worn out little brain. I'm beginning to remember that there are a lot of reasons for Josh to be slow in learning many things in his challenging life. I am holding onto the truth that Josh is one of the greatest gifts of my life and I wouldn't know how to live if I ever lost him.

Ah, big sigh. Good night.

The Imagination

2010-04-02T22:27:00.000-07:00

My two (neuro-typical) daughters (age 3 and 4) were having a delightful time doing a spontaneous art project today. The found some textured paper that they decided they would cut up. Then they found a stapler and had me staple the pieces together as they directed. Then, after trying to figure out if the pieces were kites, or lamps or they decided to the pieces to the wall to make a picture. The whole time, they were creating stories about their artwork, playing off of one another's ideas.

"This is the cross of Jesus but then Elmo needed to use it for his birthday party."

"Yeah, this one is a kite that is only used by ballet dancers or Elmo."

"I'm going to be a ballet dancer who dances on this . . . waterfall."

The development of the imagination is an amazing thing to watch. Their little minds were using all sorts of new data that they were processing in wonderful ways. Their brains are like lint brushes of human experience just picking up more and more information every day. And the gift that God has given them to play with and process that information is the imagination.

When I see this happening in my girls, I always feel a mixture of awe, delight, and sadness. Because I always think, "But what about Josh?" How does the imagination work for someone who has such an atypical brain? He doesn't have the tool of expressive language to practice using his imagination. How is his world supposed to get bigger and richer if he can't interact with it very much in a creative, expressive way?

One of the realities that always grieves me is the fact that Josh may never be able to read. Probably not. He has been working on learning his alphabet for over 4 years now and he still has a hard time with the first dozen letters. I think it's still worth it to try and keep challenging him but I have this growing feeling that he just might never get to the point of being able to interact with letters on a page or screen to engage him intellectually. If this is true, what will feed Joshua's inner thoughts and imagination?

They say that the autistic mind is more oriented toward the tangible and sensory. This seems accurate to who Joshua is. I've read him a million books but the characters and the narrative hold no interest for him. He only lights up when he sees a picture of something that he likes, like a bathtub or a spiral. He asks for Elmo videos because he's interested in the scenes where there are swirly pictures, not because he particularly has any affection for Elmo. What must it be like to be like this? What is it about certain songs or visuals that bring him so much joy? Does interacting on this level cause his mind to grow? Is that so important?

I guess it's through the gift of my imagination that I try to understand his very different mind. And it's by the grace of God and a mother's heart that I accept him for every bit of who he is.

Joshua and the God Connection

2010-03-28T21:37:00.000-07:00

The other day, a friend of mine, who is also a mother of an autistic child, asked the question, "When should my son get baptized?" I've been thinking about this and other related questions a lot these days. Specifically, I am wondering, "What does spiritual growth and connection with God look like for a neuro-atypical person like Joshua?"

My son, Joshua would fall on the lower to middle functioning levels of the autism spectrum. He definitely has an additional diagnosis of "intellectual disability" or, what used to be called, "mental retardation". Josh generally only communicates about his immediate specific needs ("Want toast" or "Want music" etc.) and even this has been a big area of growth that we've fought hard for. He will not/ cannot respond verbally to the question, "How was your day" or "What did you do today?" Josh does not seem to function on the level of reflecting about his experience as a person (or at least in a way that can be accessed by other people). He understands tangible explanations like "First we are going to go potty then we will go for a ride in the car." but there is no way that he is going to understand anything close to "Jesus died for your sins" or "You can trust God to give you peace in your heart". Not even close.

So a verbal, conceptual link to God is out of the question for this kid. Unfortunately, this wipes out a lot of how I have come to know God and the spiritual life. Both of Joshua's parents are English majors who have spent a heck of a lot of our lives teaching the Bible and conversing with people about our personal spiritual journeys. If talking and concepts are out, then how am I to understand how God is going to reach this child?

Does Josh have a spiritual journey too? Does he have choices that he will make to chose God? Is there a witness in his world that speaks to Josh of the love, grandeur, wonder, mystery and delightfulness of God? I'm pretty sure that the answer is "yes" but I'm at a loss to imagine how that works. Maybe it has to do with a showerhead. It certainly is the thing in this world that reflects the most awe, reverence, and beauty for Josh.

One area where I have wondered if I've sensed the presence of God in Josh's life is during our bedtime prayers. Mostly, it is a pretty rote endeavor where I say, "Dear" and Josh says, "Jesus". I then say, "Thank you for..." and Josh says, "Showers" (or something that he likes or sometimes it's just nonsense). Then I say, "We pray for. . ." It's at that point that he surprises me. Often, Josh will "pray for" or speak out the names of people in his life, often people that I have not talked about in a while. Sometimes it's his old teacher or a caregiver or the names of his sisters. I do not prompt him. He just says their names. Maybe I'm imagining it but I feel like it's the one moment where I have a window into who Josh cares about. It feels like a moment where Josh connects with people and God that I can see and feel.

Another place where I feel the presence of God in Joshua's life is during musical worship at our church. Joshua goes to a Sunday school class for part of the time with an aide every week. However, most weeks he comes into "adult church" for the second half of the service, which is when the musical worship happens. Josh is always into it. Mostly, I think that it's because he opens up to the music (I guess that's true for a lot of us who are not autistic) but when I hold him, I feel like there is an element of his really wanting to worship as well. Josh is into the musical worship time in way that seems different from how he is into music at other times in his life. He even tries to "sing" along sometimes (which is sometimes disruptive and has to be managed).

I have a book called Autism and the God Connection that explores these questions, though not necessarily from a Christian point of view. It has some interesting points and stories but I think that the question of Joshua and the spiritual journey is one that I, as a mother, will have to "ponder in my heart" for a long time. As the person who has the most up close seat to the drama of Joshua's life, what will I come to see about how God reaches this amazing and precious person? I think that this is a parable that I will have for my whole life.

Thank You, People Who Work with Kids with Special Needs

2010-02-05T15:58:00.000-08:00

The other day I was trying to count how many aids, therapists, helpers, specially trained babysitters, and teachers Josh has in his life. I lost count at 30. This doesn't even include the myriad of medical professionals who see Josh on a semi-regular basis. One tension that I often feel as a mother is that I lack the ability to truly express my gratitude to all of these individuals. How do you thank people who are giving a significant chunk of their days, of their lives, to people like Josh? During the holidays I think I bought $200 worth of $10 Starbucks gift certificates and wrote people many, many cards. I felt that it didn't even come close to really expressing the gratefulness that I feel. When I interact with these folks, I'm often juggling several children or running from one event to another so I find that I don't have the time (or brain energy) to really express thanks verbally.

One of the programs that Josh really enjoys is his swimming program at the Y. It's staffed by volunteers from the community and from a local university. Last week two undergraduate students were working very hard to try to figure out how to motivate Joshua to work on his swimming skills (rather than just bouncing around in the water like he prefers to do). As I watched them I felt, on a deep level, that these people did not have to do this. The local university is filled with students who are doing really "important" and career building things with their time. I am guessing that helping kids with special needs "learn to swim" is not careening them forward toward success in this world.

I think that people who work with disabled individuals are a wonderful and interesting lot. Even those who get paid for it don't really get paid much. There has to be a huge "labor of love" motivation. I'm not going to be naive enough to say that they are all just naturally giving angels with endless compassion. . . but there has to be some motivation of special love.

If I ran the world, people who work with individuals with special needs would make more money than Google engineers. I would send them all to a deluxe vacation in Hawaii for an annual bonus. They would be highly esteemed in society and given great rewards. People would declare, "Ah, these are the people who are giving with their whole hearts to those who have great need! I want to be like them!" Wouldn't that be awesome? Yes, I know. That's not going to happen anytime soon. Capitalism, productivity and all that.

One thing that I really like about the Kingdom of God, however, is that people who serve the least are seen very, very favorably. To Jesus, it seems that cleaning up after poop accidents and trying to teach developmentally disabled people new skills that it will take years for them to master if at all, are extremely worthwhile things to do with one's time. This is one of the many "upside-down" elements of the Kingdom of God that I both love and don't yet understand. I do know, however, that, because I am following Jesus, this is where I want to be headed-- into a reality where serving and loving the least is wonderful, beautiful and delightful.

Until then, I am deeply grateful for the folks who are loving and serving people like Josh.

To Alene, who knows and cares about Josh's GI problems more than anyone in the world next to his parents, thank you.

To Misty, who has fought for Josh to be able to get services, thank you.

To Anghelika, Liz, Jane, Pete, Yasi, and Chris, who help Josh to experience God in his own special way on Sundays, thank you.

To Rachel, who has hoped for Josh by making him work really hard, thank you.

To the many, many other folks who invest in Josh so that he can have a good life, thank you. Please know that I appreciate you with my whole heart and that God sees all that you do and honors you.

Marriage Wisdom for Parents of Kids with Special Needs

2010-01-25T12:07:00.000-08:00

A few weeks ago we attended an event called "Pursuing a Healthy Marriage while Parenting a Child with Special Needs". (Whew! How's that for a mouthful of a title?) It was a fabulous use of time and childcare expense.

The speakers were a couple who have raised three children to adulthood, including a son with autism who is almost 30 and still lives with them. I think they could have sat there saying, "Blah, blah, blah, blah . . . I still love God." and we all would have left encouraged. Most of the people I know who have children with special needs have young kids. We're all pretty fresh to this journey. Most of us are so busy surviving that we don't have time to think about issues like "What's my kid going to be like when he grows up?" and "What will he do when we no longer have the school system?" These are really scary questions. But it was so encouraging being in the presence of people who have gone before us and have done well.

Here they were, two mellow, wise, warm people who were sharing honestly about their real but good lives with a sense of soberness but also peace. It was like a parable -- some mysterious but attention getting teaching that elicits a response. My immediate response was awe. They did it. They're doing it. And their faith, their marriage, their sense of humor were still intact.

But here's the really interesting thing that they said. We kept asking them, in different ways, "Uh, so how do you keep your marriage from going down the tubes?" Most of us have read about the horrific divorce rates for parents of kids with special needs (some say 80%). All of us feel the extra strain that we live with. Here's what they kept saying, "You have to constantly give the other person the benefit of the doubt. You are stressed. They are stressed. You have to find a way to both give each other extra leeway because you are both dealing with so much more pressure."

Now, in some ways, that's a no-brainer. It's such an obvious piece of wisdom. I might even have come up with that if asked. But being in the place that I was, asking that question deep within my heart and mind as I came to this event, it has become this perplexing thing stuck in my head.

How can I become a person who gives my spouse the benefit of the doubt more of the time?

How can I have the perspective that here is a person who is struggling with the extra, extra challenges of having a child like Josh? Most of the time I am thinking, "You are not home with this kid. I am doing more for him than you do. I get to be the stressed one and you should be the supportive one." (Yes, I'm really that immature/ yucky inside toward the man that I love.) It seems like another dimension of reality to be a person who regularly, if not constantly, keeps in mind how much my spouse is carrying and is able to choose to be empathetic toward him.

I've been trying it a little bit. I am praying for my husband in his role as a father. I am trying to express appreciation more. (After all, he is one hell of a dad!) I am trying to be less demanding and more willing to give the benefit of the doubt, especially when he's not doing well. Often, what this looks like is deciding to keep my mouth shut and just give him some space. Today I had a household feedback item that almost flew off my tongue like a little mosquito in search of blood. At the last minute, I thought about whether this was the time that would be best for him to hear this little tiny thing. It probably wasn't so I stopped and decided to mention it at another time. It was the tiniest of victories but very real.

Lord have mercy on me. . . on us. Please help me to live in the reality that you are FOR me more than Alex ever could be. Please give me the security that I need to be able to be FOR my husband. Please help me to contribute to the health of my marriage every day. I really, really want to make it.

The Great Party

2010-01-16T00:11:00.000-08:00

Last night at our "Extreme Parenting" (support group for parents of kids with special needs) meeting, we reflected together on the passage in the Bible in Luke 14 about the Great Banquet. Jesus tells a story about a man who prepares a great party and has his servant go tell those who had been invited that everything was ready and that they should come. The passage goes on to talk about three people who made various (lame) excuses about why they couldn't come (purchased land, new cows, new wife). The host was angered but, instead of calling the whole thing off, he tells his servant to go get the "poor, the crippled, the blind, and the lame, " and to bring them to the party. He does but there is still more room so people from "the highways and the lanes" are brought in so that the house may be full and, presumably, as many people as possible could enjoy the party.

Now, studying scripture with different groups of people is so interesting to me. It really does feel like the Bible is alive because it "comes to life" so differently depending on the perspective that you have (as an individual or a group) when you come to it. This particular night, we were struck by the craziness of inviting a bunch of "people with special needs" to a party. Several of us shared, with some amount of pain, that our disabled kids don't often get invited to parties. Think about it, who would want a party full of people with autism? or ADHD? Many of our kids are not the people you think of when you imagine having a fun party. Somehow, they are forgotten when it comes to gatherings or playdates. And honestly, many of our kids have behavior issues that don't jive with having fun at a party. One mom shared that for a while her autistic son had a thing with chewing on power cords when going to other people's houses. We've taken Josh to birthday parties but he usually spends them trying to get away from the chaos and the noise of the other kids. He will always find his way to the back of a bouncy house where the motor and fan are and sit so he can enjoy the concentric circles of the fan and the humming noise, which he will mimic (for an hour if I let him). I guess he's having fun but it gets to be a little weird after a while. I have a feeling Josh is just never going to grow up to be that person who can walk around with a cocktail in his hand, ask people how they are doing, and charm them with delightful stories.

However, it struck us that Jesus is telling a story about a host (God) who WANTS all of these disabled people at his house. I can tell you that it was probably not easy to host a bunch of blind, lame, or otherwise disabled people in your house, especially in those days, where people with disabilities were not valued, empowered or integrated into general society. These were probably uneducated, unemployed beggars. Who knows what their social skills were like. One does not gain social capital from having a party for this crew. But they had need and clearly wanted to receive what was being offered. None of them made excuses.

And what of these people from the "highways and lanes"? My guess is that they were either travelers, homeless, or prostitutes-- also, not the population that one might invite to a lovely, delightful, socially smooth party. Yet this is what this host does. "Bring them in! Compel them to come!" he says.

It was a pretty profound thing to watch a bunch of parents of kids with special needs to realize that God is someone who wants our kids in His house. He would be willing to deal with a house full of people like them - and the baggage that they bring. And if the party/ banquet is an image for heaven, then there is a message in the scripture that there is room for a person like Josh in heaven. In fact, he might be more likely to get there because he is so clearly needy and in need. Joshua has never made an excuse in his life.

Sometimes I forget that there were disabled people throughout human history and in Jesus' time as well. As our little group has studied various scriptures that either mention or apply to the disabled, I've been amazed at how the scripture speaks. It is so full of application to our lives. As a group of parents of kids with special needs, we started having brief scripture studies/ devotionals because we are a group of people who are so constantly in need of encouragement, even more than venting (which is not always encouraging). I went away from our gathering full of thoughts and hope.

Oxygen Mask

2010-01-03T21:50:00.000-08:00

Last week my daughter and I took a quick trip to Los Angeles to visit a friend. On the flight down, the flight attendant gave me the usual quick talk about how, if we were in an emergency situation, I should put on my oxygen mask on first then help my child with hers. Externally, I nodded in a respectful response. Internally, I was thinking, "Are you kidding me? If I were in a situation where there was no oxygen, am I really going to put a mask on myself first and let my child sit there without enough air to breathe? I don't think so."

Despite my emotional response, I've been thinking a lot about the image of a parent putting the oxygen mask on themselves first and then on the child. It makes sense. If the parent passes out or is incapacitated, the child isn't in a very good situation, is she? Ethically, a parent has a responsibility to put themselves in a situation where they will actually be able to help their child. Otherwise, trying to put the child first could actually be endangering the child.

I attend a monthly meeting for parents of special needs kids in my church. We call our little group Extreme Parenting. It has been a life line for my husband and I as we navigate life with Josh. We talk about the image of putting the oxygen mask on ourselves as a metaphor for what we are trying to do when we make/ take the time to meet with other parents, pray, vent, share, reflect on how scripture speaks to us as parents, and process the challenges of our lives together. We are taking care of ourselves so that we can be best equipped to take care of our kids.

It seems to me that there is a great need for parents in general (and, especially parents of kids with special needs) to take care of ourselves. My observation is that depressed, isolated, overwhelmed, angry parents of kids with special needs are not exactly what one would want for these kids. Yet, why is it so difficult for us to take care of ourselves so that we can best take care of others?

It's a new year. In 2010 I want to do the following things so that Josh can have the best mommy that I can be:

1. I want to keep going to Extreme Parenting and to give myself to that community.
2. I want to make sure that I am having regular date nights with my husband.
3. I want to go to the YMCA at least twice a week to exercise.
4. I want to keep writing on this blog at least a few times a month to process what is going on in my head.
5. I want to blow dry my hair and put on make up once in a while so that I'm not just living like an overwhelmed mom who meets needs all day long all the time.

If anyone reading this post has any other ideas, I'd love to hear them!

Quitting Coffee (or "How am I going to make it through another day of parenting on very little sleep?")

2010-01-02T22:20:00.000-08:00

For the first time in a really, really long time, I am attempting to live my days without coffee. I have acid reflux that flares badly when I drink coffee, causing me to wake up in the middle of the night several times each night, coughing because I have stomach acid in the back of my throat. It's a little like being in a constant state of almost throwing up. It's very unpleasant and I have become desperate enough to finally heed my doctor's advice to go two full months without drinking coffee to see if it makes a difference.

How much do I love my coffee? Let me give you a little bit of my history with coffee.

When I lived in LA a few years out of college, I lived with a household of four women who all drank coffee in the morning. We made a big pot of Folgers or Safeway brand or some other cheap coffee. Maurine, who was from Northern California, had to make her own espresso in a little metal percolator (I think from Italy) which she put directly on the stove. She and her Bay area friends were very into their coffee. Very. When we went to conferences, they brought their own coffee with their own french presses. We used to make fun of them.

Now, I am one of them. I live about 3 minutes from a Peet's coffee and about two minutes from a Philz coffee (which is amazing). I have become that suburban mom who has several cups of coffee in the morning and finds excuses to get a cup from a coffee shop in the afternoon as well. I have evangelized several friends on the multi-sensory delights of Blue Bottle Coffee (an "artisan coffee" which is only sold in a few places in the Bay area. I am told that they won't even sell it to you if you confess to the vendor that you are going to drink it later than a week after they have roasted it.) Yes, it is a unique, snobby, passionate, probably addicted coffee culture that I swim in and I have given myself completely to it. I love me my coffee.

I have to implicate my husband as well. For several years now, the first words that I often hear from my beloved's mouth in the morning is "Who's going to make the elixer!" And when I do (or he does) that lovely aroma of freshly brewed coffee envelops us with comfort and encouragement as we endure getting three grumpy children ready for the day.

A big element of my coffee history is my son's sleep issues. Josh was not allowed to sleep through the night for the first year of his life because he couldn't go that long without eating due to his "failure to thrive"/ low weight issues. But even beyond that, this was a child who had big troubles in the sleep department. When Josh was 5 we found out that he had obstructive sleep apnea so he had surgery to take out some of his tonsils and adenoids. It's been a long, long journey. Basically, until this past year, Josh woke up in the middle of the night 6 out of 7 nights a week crying and stimming for several hours. In the fall of 2006, I had a one year old who slept well, a newborn who woke up hourly, and a 4 year old autistic kid who screamed and cried from 2-5am every night. I rarely slept for more than 2 hours at a time and never more than 5 hours total. I am not kidding. Sleep was just not something that God seemed to be giving me.

How I survived, I have no idea. I think it was one part faith, one part survival instincts, and in large part, coffee. I could absolutely drink caffinated coffee at 9pm and fall asleep as soon as my head hit the pillow. I was that constantly tired. This is definitely when coffee and I became very, very special friends.

Any of you parents of special needs kids out there feeling what I am saying? Anyone else turn to a little something chemical to help you make it through very long and challenging days? Maybe coffee? Maybe something else?

Currently, for the first time in many years, Josh sleeps through the night more often than not. . . and when he wakes up, he's usually pretty content to hang out in bed. In other words, my sleep is not horrible. My life is becoming more and more "not in crisis". We are slowly moving out of just surviving. There is a little bit of margin here and there, especially since the girls are in preschool.

But I was not yet ready to part from my beloved warm cup of energy. . . or so I thought.

It's been three weeks since I stopped coffee cold turkey. Shockingly, I still make it through my days. My life has not fallen apart. I am not completely void of energy as I feared that I would be. Could it be that I have a deeper source of energy than coffee?

Josh Makes Me Laugh

2009-12-06T19:40:00.000-08:00

No one cracks me up like Joshua. Ok, my husband is a pretty funny person but the silly Josh moments catch me off guard and make me laugh out loud! The odd thing is that when Josh makes me laugh, there is no one to share the laugh with because he's not meaning to make me laugh and he's not aware of me laughing with him. Also, I'm usually busy being deeply embarrassed but also amused.

For example, there was the time when we were in line at the Costco food court behind an older African-American woman with a very large rear end. Josh walked right up to her butt and gave her a couple of good pats. Then he giggled. I knew that it was going to happen. It was like one of those "slow mo" moments where I could see it happening but was powerless to stop it. The woman didn't say anything but seemed to understand. I can't remember if I said anything (I probably did) but what I do remember is that it was hilarious in a mortifying kind of way.

Another example is when Josh and I were at Target together. We had just walked by the hairdryer section. A whole row of hairdryer boxes with pictures of various hairdryers; Josh was in heaven! Always trying to maximize opportunities to get Josh to use his words, I said to him, "What is it, Josh?" He replied in a awe-filled whisper, "blow dryers". Nothing else needed to be said. He was happy and satisfied for almost long enough for me to get through my list of things to get. We were approaching the end of our shopping trip when he burst out in a loud, joyful exclamation, "Blow me!" I said out loud, "Oh my God!" (I was not swearing, I was praying. Well, maybe swearing and praying.) I hoped that it was a single, random uttering. No such luck. Josh liked the sound of what he came up with. "Blow me! Blow me!" he exclaimed over and over again, laughing like crazy. You have never seen a middle aged mom sprint so fast to the check out line with her hand over her deliriously happy child's mouth. It wasn't until much later did I see the humor of the situation.

Life with Josh is just funny . . . chaotic, unpredictable, socially odd yet very amusing. I never thought that I would see life this way. I am a pretty serious, driven, productivity-loving second generation Asian-American mom. I like to plan things and them press forward to accomplish those plans. I feel the need to zoom through life and my check lists of things to do without much regard for enjoying the present. I'm not very good at just being in the moment. But life with Josh is filled with moments that just have to be savored.

Right now, Josh is dancing (well, walking in circles) in the kitchen singing "To the left, to the left. . ." then laughing uproariously! Who exposed this child to Beyonce? I have no idea but it's hilarious! He thinks it's pretty great as well. I love it when Josh is loving something. Life is so perfect when he is happy. And when Josh is happy, the world is a wonderful, beautiful place.

Portion Control

2009-11-08T21:03:00.001-08:00

About 3 weeks after Joshua was born, we had to hospitalize him for "failure to thrive". That's the official, medical phrase for "he's not eating and not gaining weight". It was because of that hospitalization (after 3 more weeks) that we were able to receive Josh's initial diagnosis of Septo-Optic Dysplasia.

Feeding Josh has always been a big deal. For the first few years of his life, the child just wouldn't eat. He had serious oral aversion and oral sensory issues so he hated having anything in his mouth. I cannot tell you how much effort was put into getting Joshua to eat. We would have to do a big song and dance every mealtime to get him to consume a tiny amount. Then, often after getting some food in him, he would often throw it up because he also had reflux from an underdeveloped esophagal sphincter. We went to occupational therapists and feeding specialists to teach us how to feed him. I learned to put olive oil into his applesauce etc. This went on for years.

And the kid was always seriously skinny. Always under the 1 percentile. Usually not even on the chart. We were always concerned about his food intake. One time, when Josh was about 18 months old, I had to go speak at a conference right after Christmas so his Dad stayed with him at my parents house in Portland. I would call in to ask how Josh was eating. They would say "Oh, Ok". This was pretty much a big fat lie-- they didn't want me to worry. He had barely eaten.

Being a Korean mom, this was extremely difficult for me. I come from a culture where food is love, is community, is family, is happiness. So having a child that wouldn't eat drove me batty. But it also brought out my inner Sigourney Weaver and made me even more determined that THIS CHILD WOULD THRIVE! Little by little, I became really good at getting my son to eat.

Well, now Josh is 7 years old and somehow, he has gotten a little bit tubby. He has a very healthy appetite. Very healthy. These days on some weekend mornings, he can ask for and eat 4 waffles, a bunch of cut up cheese, 5-6 slices of bacon and 6 mandarin oranges. According to our last doctors visit, he is 50% height and 80% weight. He has gained 20 pounds in the past year. When he sits on the potty, he has little rolls in his midsection. Now we are concerned about his weight in the other direction. Visually impaired children are at a much higher risk of obesity because of the challenges of exercising. Indeed, Josh does not move around much and his great love is sitting around and listening to music.

Last week I went to a nutritionist to get some input for Josh (for weight as well as a bunch of other issues). She was a really nice, professional woman who communicated with an amazing balance of truth and grace/ empathy. With kindness, warmth, and a good listening ear, she built enough trust with me to basically kick my butt about giving Josh too much food. I realized through my visit with her that the traumatized Korean mom in me is having a hard time not overfeeding my baby. The nutritionist told me that I needed to exercise more portion control for Josh (since he doesn't yet get food for himself). She said that many, if not most, parents in America overfeed their children.

Wow. Exercising discipline in portion control is hard enough for myself. What about with this child who says over and over again, "Want toast?" Everything in me wants to reward his "using his words" by giving him food. Everything in me wants to make sure that he will thrive. Everything in me wants to love him by giving him food. But I know that food is actually not love. Love is love.

Tonight he asked for a third piece of toast and I told him that the only options were cucumbers or red pepper. Wouldn't you know it, he asked for red pepper and ate it happily.

Adoption Thoughts - Is Josh my "own" child?

2009-10-24T13:48:00.000-07:00

Today when I dropped Joshua off at one of his therapeutic programs, I started chatting with one of the staff who were checking us in. I had Hope with me and she noted that Hope and her brother do not look very much alike. I said, "Yeah, our first two kids are adopted." She said, "How many children do you have?" I said, "Three kids. We adopted two then we got pregnant." ( I knew what was coming . . . the response that is supposed to be empathetically joyful but ends up feeling somewhat confusingly offensive to me.) "Ah! A miracle child!" The woman said, pointing to Hope, "And she brought such luck to you for the next one. Your dream came true!" (It's always some version of this - something about how finally a child of our "own". We must be so happy! Many people comment that Hope was our lucky charm.)

I never know what to say. I mean, I know that people are trying to be nice and they mean well but I have about 6 different issues with this type of response:

1. All of my children are my own. Who else's would they be? I would die for any one of them. I would give my life for each of them. I am giving my life for them, diaper by diaper, day by day.

2. Each of them are miracles. In a way, the adopted ones are especially miracles in their presence here on earth because of the pressure that their birth moms received during their pregnancies to abort. That was not an option for Anna but very real possibilities for Josh and Hope when they were in utero.

3. Hope was not a way to get to Anna, even in some cosmic or superstitious way. She was a complete, maximal blessing in and of herself. Pointing to Anna or making Anna possible was, in no way, any real part of who she is. I do not believe that God rewarded us with Anna because we were so virtuous in our adoption of Hope and Josh. We adopted because we desperately wanted children not to be noble.

4. Having a biological child does not make me any happier or complete than having an adopted child. Anna is not any more of a blessing (or any less of a burden) than Josh or Hope. I must admit that it is kind of cool to see Alex and my genetic make up reflected in her little body and personality but that's just one thing that's cool about Anna. It's also really cool that Hope has such a can-do personality and will probably rule the world someday. It's really cool that through Josh, scores of people have been moved more toward the unfathomably loving heart of God.

5. It's strange to me that people think that Anna would be the big blessing gift from God. Don't get me wrong, she is a huge blessing gift from God, and yes, she is a miracle for many reasons, including our medically documented infertility issues on both sides. But it's through Josh that I have most interacted with God, turned to God, and heard from God. Joshua is the biggest catalyst for my spiritual growth. There have been several times where God has spoken to me about Josh in an almost audible way. Twice, I heard God ask me, "Will you give the rest of your life to parenting this child?" Like it was a real question that He expected a response from. I felt Him waiting for a response, really listening to my heart. I said Yes. It felt like a vow that I was asked to make that was not unlike my marriage vow.

6. I never, ever want my children to hear people insinuate that Anna is any more valuable or miraculous or wanted than Hope or Josh. I can imagine what it would do to Hope to hear comments that seem to convey that a biological child, namely her sister, was what we really wanted. I know that I can't completely protect her from those attitudes but I want to. I guess that's why I'm blogging about this today-- so i can think through these things and have a good answer when people say stuff like this.

Hating the Woman at Costco

2009-10-20T10:09:00.000-07:00

Why is it so easy to hate people?

I mean, why are there so many situations that you come across in life that tempts you so strongly to think that people are mean, idiots? Yesterday Josh and I were at Costco together. Josh hadn't gone to the bathroom in a while and it was the time of the day where he tends to have accidents because it's almost time for his hormone meds. I was actually quite proud of him for not having had an accident. He was being very cooperative in going to the bathroom at Costco.

As we were heading to one of the stalls, a woman, who was about my age, says to me, pointing her finger, "Why are you bringing him into the ladies room? Isn't he a little old?" I stood there for a few seconds with my mouth open, searching for something to say. Mostly, I wanted to rip her head off. Here is someone who has NO idea of all that goes into trying to help this child move toward being potty trained. She has NO idea about how much anxiety I feel about Joshua's future in terms of his independent living skills. She doesn't even seem to register that there is something going on for Josh, despite the fact that he is busy flapping his hands and walking in circles. She just judged and spoke. Nice.

I think I said something about his being visually impaired (which is only a very small fraction of the story) and retreated into the stall with Josh.

I fumed about this interaction throughout most of the rest of the shopping trip. I thought of mean things that I could have said as I put a ridiculously huge amount of food and merchandise in my cart (does anger make you want to buy more stuff?) Then, as I was buying enough bandaids to last until my children are grown, the spiritual lesson came to me. Could it be that I was more like this woman in the bathroom than I cared to admit? The truth is that I judge people's actions as "inappropriate" all the time without knowing much at all about what might be going on for them. Unlike this woman, I might keep most of those judgements in my head but I really do the same thing. I judge people's driving, parenting, or dress based on the tiny bit of information that I have in the present. My thoughts reveal that I decide that I'm the arbiter of appropriateness when I am actually only coming from my own little perspective.

Boy, I probably should try to stop. Who knows? Maybe that lady at Costco even had stuff going on with her. I am going to choose to forgive her and to be more merciful in my own head in the future. It's not easy being a parent of a special needs child. It's even harder being a sinner.

Joshua's Sisters' Perspective on their Brother

2009-10-18T20:56:00.000-07:00

It's an interesting, amazing, and scary thing for me to watch Joshua's sisters grow in their awareness of the whole category of disabilities. The other day I was picking up Joshua at his after school program with Hope (age 3) and Anna (age 2). We were waiting for Josh to pack up and get ready to go when another participant in the program walked into the room. This boy had cerebral palsy, among other disabilities and, therefore, had noticeable differences in his gross motor function.

Hope asked me, "Why is that boy walking that way?"
I responded, "Well, I think his muscles don't work the same way as most peoples do."
"Why not?"
"Well, sometimes people are different."
"Why?"
(Are you getting a sense of what my life is like talking to two curious, extroverted preschoolers all day long? I get asked "why" A LOT of times in my day.)
I paused, trying to think of a good, accurate answer that would make sense to a three year old. Soon enough, Hope came up with the answer herself. "Like Josh!" she said, with a sudden sense of clarity. "Like he don''t have good eyes!"

To Hope and Anna, all of the things that Josh does has to do with the fact that he doesn't have "good eyes". (As a part of his central brain underdevelopment, Joshua's optic nerve is extremely underdeveloped, to the point where it was reasonable for him to have been blind. Miraculously, he does have around 20/200 vision.) What the girls understand, in their little girl brains, is that their brother is visually impaired and that is why his eyes make little movements (nystagmus) and that he is very conservative about walking around by himself at times. They don't yet understand that he also has autism, intellectual disability, panhypopituitarism, obstructive sleep apnea, and about 4 million other diagnoses. Whenever he does anything odd or upsetting or disturbing, they chalk it up to the fact that "he don't have good eyes". One day when Josh was having a major tantrum, screaming, hitting himself on the head, little Anna turned to me and said, "It's because he don't have good eyes. But that's ok. We will hold his hand when we go to the park."

Their acceptance of their big brother is so sweet and innocent. Even when he says, throughout the day, "Want sisters to go away" with great regularity, they love Josh and often wonder where he is. Josh is an always remembered part of our happy little family in their minds. "We are five, Mommy, aren't we?" or "I have one Mommy, one Daddy, one sister and one brother!" They do not yet ask complex questions like, "Why did God let Josh be how he is?" or "Why do I have to deal with a family that is so different?" or "Why doesn't Josh have any friends?" But I dread the fact that this time will come soon enough.

Until then, I savor the unconditional love that my girls have for their brother. I treasure every morning that they jump on his bed and hug and kiss him as he crankily wakes up. I smile when they want to wear his clothes. I know that these two girls will probably have a longer relationship with Joshua than I will, God willing. I pray that this precious time of bonding in their early childhood years is good, rich, and supernaturally full of love.

Desperate Parents

2009-10-12T20:00:00.000-07:00

Last week I went to a parent education seminar sponsored by the Child Psychiatry Department at the local hospital. I found the explanation of various current therapies for autistic childrean really engaging, helpful, and informative. Near the end, they were describing one therapy that I've had Joshua be in for the past year (Pivotal Response Therapy). The leader of the seminar asked if anyone had experienced PRT so I raised my hand and said that I had. I shared for a few minutes about how much I appreciated the therapy and the therapist and that Josh had really moved forward in some of his behavior issues as well as his speech.

When the seminar ended, I am not kidding you, at least 7 parents approached me asking for my email address so that they could get more information about the therapy that Josh had been in. They literally surrounded me, almost competing to connect with me. I felt like a momentary rock star of the special needs parent world. One parent even walked me to my car, peppering me with questions.

Of course, it wasn't me that they were really interested in, and that's ok. We parents of special needs kids are truly desperate people. We live in a world where the clock is ticking on our kids and we feel like we need to get the right help for them at the right time or else our kids are doomed to be stuck in their disabilities. Yes, we know in the back of our heads that no therapy with be a magic formula and yet we all still want the very best for our kids who all have an overwhelming amount of need.

I am not a stranger to that feeling. Every day I feel that sense of desperation. Sometimes it veers more toward despair. Sometimes it's a desperation that drives me to work hard to get the things that Josh needs to have the best chance at life. When I'm most sane and centered, that desperation leads me to God, to prayer and to trusting that it's not all up to me.

Art Therapy

2009-10-09T21:32:00.000-07:00

Joshua and I went to a trial session with an art therapist today. We walked into a studio that felt like a warm, sensory bath. Paint and colors were everywhere. The place had an aura of exploration and messy beauty -- perfect for a neuro-different child. Judy, the artist/ therapist was immediately fascinated with Josh. Josh was fascinated with the showerheads and hairdryers that Judy drew for him over and over in a myriad of mediums. He even drew/ painted quite a few of them himself. Each time he admired the image with a sense of wonder and delight.

I don't know what it is about showerheads and hairdryers that my son loves so much. He has been obsessed with them for almost 3 of his 7 years now. I think he loves the visual image of a spiral or concentric circles. I mean, he really, really loves them. He will talk about them in a breathy, whispery tone of wonder usually reserved for prayer or the Grand Canyon or something.

As one of the two people in the world who are the closest to this boy, I feel such frustration that I do not understand how his brain works. What brings delight and pleasure to this autistic mind feels so far away and hard to grasp. Josh has few words so he cannot tell me much at all about what he is thinking. However, sometimes, when he draws something, I get a sense of his inner world and I, too, feel a sense of awe and wonder. I'm not exactly sure how heaven works but, if I make it there someday, I look forward to learning/ seeing more about how Josh sees and experiences the world.

Want Jesus Music?

2009-10-01T14:47:00.000-07:00

Sometimes Josh has a difficult time transitioning from the car (where he is listening to his favorite music) to the house (where he knows his little sisters are waiting to torment him by overwhelming his fragile auditory processing system). Today he did not want to get out of the car because he was listening to a worship CD that he enjoys (and he was avoiding being with his sisters). I was not in a very patient mood. I did not give him a 2 minute warning like I am supposed to do. I did not let him hang out in the car for a few minutes then come back for him like I sometimes do. I was very, very tired and just decided to power up and get him out of that #*$@! car. So, of course, Josh was screaming, "No, No! Want Jesus music! Want Praise to the Lord! Want Jesus!" (while hitting himself and me) and I was yelling "Joshua! No more Jesus music! Get out!"

And of course I did not have perspective in the moment to realize the irony of this situation. One would think that a former missionary and current pastor's wife would not be yelling at her multi-disabled child to stop worshiping God in the main way that he knows how. Really, you'd be surprised at the ridiculous situations that a mom of a child with special needs finds herself.

Bliss at Nordstrom

2009-10-01T14:31:00.000-07:00

The other day Josh and I had an amazing and beautiful dinner together at the Nordstrom Cafe. We were at Nordstrom to purchase some unspeakably expensive shoes (due to various feet issues that my son has). We were both very hungry so we went and shared a cheese pizza and a nicoise salad. At some point I realized that Josh was calmly, quietly, yet enthusiastically eating his dinner without any strange noises or motions. He was even using his words to ask me for things that he wanted (like the 6 pats of butter that I let him have because I was so impressed that he was verbally asking for them). It was almost like being out to dinner with a typically developing child. (And an extremely well-behaved one at that!)
I almost couldn't believe what I was experiencing. I am so used to managing Joshua's strange noises and mannerisms and just ignoring the looks. One time Josh was walking in circles at Safeway and I wasn't even thinking about his strangeness until a very angry woman hissed at me to "control my child" better. This was often the norm when I went out with Josh. Yet here I was, having a really kick-butt salad (with perfectly grilled salmon) with such a lovely, enjoyable, peaceful child.
Later, as we were leaving the Nordstrom Cafe, I realized that we must not have quite appeared like a "normal" mom and son as an older lady was smiling at us so kindly that she must have realized that something was going on for Josh. I asked her to take a picture of us and she was happy to.