Sunday, December 6, 2009

Josh Makes Me Laugh

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 that I saw 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.

Sunday, November 8, 2009

Portion Control

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.

Saturday, October 24, 2009

Adoption Thoughts - Is Josh my "own" child?

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.

Tuesday, October 20, 2009

Hating the Woman at Costco

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.

Sunday, October 18, 2009

Joshua's Sisters' Perspective on their Brother

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."
(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.

Monday, October 12, 2009

Desperate Parents

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.

Friday, October 9, 2009

Art Therapy

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.

Thursday, October 1, 2009

Want Jesus Music?

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

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.