Monday, June 5, 2017
Do you ever feel like the day can just turn on a dime? One minute you are having a lovely, laughter-fulled time and the next minute things can go so very, very wrong so very, very quickly.
Today, Hope and I went to Pet Food Express to give a bath to Luna, a friend's golden retriever who is staying with us for the summer. Since Hope was a toddler, we've been going into this place to watch dogs being bathed here at our neighborhood pet food store. I could drink almost a half of a cup of coffee while I allowed Hope and her sister to stand around and watch as dog owners cleansed their canine family members in neat little stalls with all sorts of hoses and nozzles. And because there were things that looked like shower heads there, Josh often enjoyed being there as well. It was a fascinating look into the exotic world of dog ownership.
Today was the first time for both of us that we got to do it for ourselves. We gladly paid our money and got a shiny, golden token. A very friendly staff person gave us an introduction to the marvelous dog shower system and then we invited our slightly smelly dog to go into the wash area.
Luna was not thrilled but, because she is the world's most obedient golden retriever, she obliged. You have no idea how good it feels to rub a dog's golden hair with almond scented dog shampoo-- really rubbing it in. It's like a sensory meditation. We took turns giving her the free treats that they had at the store. We had aprons on but we got wet anyways. We were laughing. It was awesome.
Luna even sat very still as we dried her now lovely smelling fur. Hope and I felt good about how well we had accomplished this task. We sauntered out of the store refreshed and energized. I paused on the sidewalk while Luna politely smelled a few butts of dogs who were headed into the stores. Hope was considering purchasing a dog cookie for Luna. I noticed what a beautiful day it was. The day was sunny but not too hot. I could smell the coffee from the Peets coffee shop a few stores down. What a beautiful scent is coffee, that wonderful elixer. The scent was smooth, nutty and surprisingly strong. It was like the smell of an old friend. I couldn't help but to smile.
I clicked my key to open the side door to my van, which was parked directly in front of the pet food store in the disabled parking spot. Josh had been unhappy in the store so I had brought him back to the car, rolled the windows down and left him there to occupy himself with a cup of ice. As the door opened, I realized why the smell of coffee was so strong. Coffee grounds had been sprinkled all over the back of my van. It was in the cup holder, on the floor, on the ceiling and on the seat. It was all over Josh and the bag had been tossed onto the floor below him.
In that moment, I realized that Josh must have reached up to the front seat and had found the bag of ground coffee that I had purchased at Peets just before we went to bathe Luna. It must have looked or felt like sand to him because he had poured it all over himself and my van. My son loves to pour things. At parks, Josh loves to watch sand pouring out of his hands. He could do it for hours. It appeared as if he had also attempted to dry-shampoo his hair with it.
I took a deep breath and tried to not cry. Why is it that you can turn a quick corner and then have chaos whack you across the face with no warning? I guess because life is just like that, a diverse array of scenes and emotions that remind us that we have very little control.
Saturday, January 14, 2017
Echolalia is the "meaningless repetition of another person's spoken words as a symptom of psychiatric or developmental disorder". Josh has been exhibiting echolalia since he began to learn how to talk. We've spend a tremendous amount of time trying to teach Josh to respond to questions with an appropriate simple answer rather than by repeating the question. For many years, if you asked him, "Do you want toast?" He would always respond by saying, "Do you want toast?" right back at you. With help from autism therapists, we learned to not give him what he wanted until he replied with a more appropriate response such as "Yes".
Even after many, many years of training and intentional assistance, when Josh is tired or when he does not know what you are talking about, he will simply reply to a question with a repetition of a question. A query such as "How was your day?" will likely solicit the response "How was your day?" because Josh does not know how to answer a question like that.
Sometimes when Josh is alone, I will hear him repeating things just because he wants to or maybe he likes the sound of a particular word or phrase. Last month, he was in his room listening to the radio with his headphones on. The quiet of our house was suddenly punctuated with Josh loudly and happily exclaiming "This year, give the gift of beauty!". Another day, I heard him say, "The season of shopping and shipping!" with a follow up of lots of clapping.
Recently, Josh was having his breakfast, while I listened to NPR on the radio and cleaned the kitchen. As usual, Josh echoed some of the phrases that he heard on the newscast. I don't know if this is just my imagination but it was strange to notice the specific phrases that he chose to echo.
During a newscast about the besieged city of Aleppo in Syria, Josh repeated phrases like:
"Many wounded people trapped."
"Children are dying."
"What do they have to hope in?"
It felt like some sort of emotional editor or a a personal prayer highlighter of the news for me. I was in the mode of semi-listening to the news while putting dishes away while planning the rest of day. But after the third or fourth seemingly meaningful verbal statement by a kid who cannot understand the news, I began to wonder if it was possible for God to speak to me through echolalia.
I stopped with the dishes, took a seat and waited for a minute. Wondering if I should pray for Syria, interact with Josh or turn off the radio, I just sat with the moment of pause. Josh also entered into the moment of pause. It was a rich, five-second moment of shared attention; plump with wondering and waiting. I felt like God had my attention for the first time all day. Then my son stood up and did a little dance of waving his arms and head back and forth. Then he went back to his room and shut the door like, "My work here is done."
Does God ever get your attention in surprising, unexpected ways?
Tuesday, January 3, 2017
I've known Josh almost since the day he was born. Susan and Alex lived upstairs from me and my roommate for Josh's first year of life. In light of his heath issues and my night owl tendencies, I had many middle of the night shifts feeding him very specific amounts since his body didn't give him appropriate signals regarding when to eat or the necessary amount. I don't know how much of it is because he was the son of my very good friends who had wanted him so badly and how much of it is because of that year of helping him to live, but I know that I've always loved Josh.
Yet it's tricky to know how to communicate that to Josh or how to have a meaningful relationship with him.
I no longer live in the same area as his family and, at best, I only get to see him twice a year. Generally, I'm good at figuring out how people work and how to build a relationship with them. With people who are important to me, I figure out how to care for them well, how to be a good friend to them, and how to help them know that they are loved.
I have no idea how to do that with Josh.
Some of that has to do with how little time I spend with Josh. Some of that has to do with how little time I spend around people with special needs, particularly autism. Some of that is just Josh and the ways that it can be difficult for anyone to fully figure out how to relate to him, communicate with him, or know what's going on for him.
Perfectionism is a struggle for me and it comes out in my relationships. I work at them. I'm thoughtful with people. I'll go over interactions to figure out what I would have liked to have done or said differently - sometimes intentionally, sometimes compulsively. The more that I care about the person, the more I work. And usually I can see the pay off for that work in strong relationships and people who feel cared for by me.
But with Josh, I don't even know what work would really look like. Despite all of my relational skills, I don't think that I could ever reach the place of feeling like I'm competent and confident at how to relate to him or how to communicate to him how much I love him.
I found myself thinking about Josh recently and aching a bit about how much I love him and how incapable I feel to really communicate that to him. But then God made me take pause. "Oh, Rachel. What's reality here?"
The last couple of times that I've visited Josh and his family, Josh has clearly wanted to spend time with me. The visit before last, it came up just a couple times. Josh likes to spend quite a bit of time by himself in his room. Most of the time others are not welcome. But he very specifically wanted me to hang out with him. "Sit, please." Josh is often polite while being rather insistent. So, I sat on the end of his bed while he drew or listened to his radio for a while. After a stretch of feeling like 'is this really doing something for him?' I got up and immediately received, "Sit, please." So, I sat.
Several months later on my most recent visit last spring, I was washing dishes on the first night and Josh came to get me and took my arm to pull me toward his room with 'Sit, please.' So we hung out. I played some ukulele for him, but I feel like it just gave me something to do. Josh just liked me being present. During the days that I was there he initiated with me so much that it stood out to the rest of the family as atypical Josh behavior. And it was often enough that there was no way to interpret it as random. We couldn't understand it, but it wasn't random. My last dinner with them, Josh was his usually quiet self while I chatted with his otherwise very talkative family. But when I got up to leave the table, there it was again. "Sit, please."
I don't know why Josh likes hanging out with me. Susan, Alex, and I have speculated about what it is about my personality or demeanor that he finds appealing. But in Josh's way, we're friends. And because I love him, that means a lot to me.
But more than that, my relationship with Josh is now a reminder that I don't have to have it all figured out in my friendships for them to become what I want them to be.
I do think that it's good to work at relationships. They deserve and require that. But I'm never going to need to be reminded of that. I need to be reminded that my relationships aren't as dependent on my work and abilities as I think that they are. Josh is that reminder to me.