Poo Poo in Paradise

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

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

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

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

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

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

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.