Crazy

I just finished reading the book Crazy: A Father's Search Through America's Mental Health Madness, by Pete Earley. It chronicles emergence of mental illness (bi-polar) in Earley's son and his travails trying to get treatment and stay out of the justice system. Interwoven with his son's story are the stories of four mentally ill people whom Earley connects with through the Miami/Dade County Jail system, which gave him wide-ranging access.

The book was disturbing on many levels, but it got to me on a personal level as I thought about my kids. The recurring motif throughout the book is that it's extremely difficult to get appropriate treatment, especially for those who need it the most. Civil-rights laws have given mentally ill patients an unquestioned right to refuse treatment, regardless of their level of competence. At the same time, the state hospitals that used to be available to provide treatment (even if it wasn't good treatment), have largely been shut down. The community mental-health centers that were supposed to replace them largely failed to appear.

The ten-year-old has shown some signs of both mood and thought disorders. This spring we had to make changes to his medications because he was hearing voices telling him to hurt people. The prospect of him being both autistic and mentally ill, and me not being able to ensure that he takes his medication, is terrifying.

The seven-year-old is almost certainly going to have to live in some sort of assisted-living setting. For him to live independently will require a rate of improvement that verges on miraculous. And we know an awful lot of children like him in his age cohort. There isn't going to be anywhere to put them all once we parents are no longer able to care for them. In order to pay for his long-term care, we'll need to leave him a multi-million dollar inheritance. Right now that seems unlikely.

I hope our country wakes up from it's Republican-induced slumber and remembers that as a society we have obligations to all of our citizens, not just the rich ones. Otherwise I don't know what will happen to our children.

Everything in its place

The seven-year-old has a very strong sense of order. It's been evident for years. As a two-year-old, he used to drink a bottle of milk while watching Bedtime Stories and Songs (a Sesame Street video). He knew that bottles were supposed to go in the sink when he was done. He had to get that bottle in the sink when he finished it. Some nights he be practically asleep, but he'd rouse himself to run into the kitchen and toss the bottle into the sink. Occasionally he'd drop the bottle and it would roll under the TV stand where he couldn't reach it. Then all hell would break loose and he'd throw a big fit until one of us retrieved it for him.

I've written previously about his tendency to confuse trash, shoes, and dirty clothes and put them all in the same place. I haven't mentioned the way he will jump out of bed in the middle of the night and pick up any dirty cloths off the floor. He knows that dirty cloths belong in the hamper. When we started toilet training him, he learned that when he took off a diaper it should go into the waste basket. Then we started putting underwear on him. The underwear also went into the waste basket. That was probably the origin of confusing waste baskets and laundry baskets.

The latest manifestation started a few weeks ago. He stared grabbing random items off the counters and tables around the house and throwing them away. We think he was saying that there was too much clutter. So we're trying to reduce the amount of clutter and increase the level of order. So far I've managed to get the kitchen counters cleaned off and keep them fairly clear for two weeks (a new record for us). I've also thrown out or moved to the garage a lot of stuff that was in the file cabinet and the storage cabinets in the family room. (Four years ago we took out all our bookcases when the seven-year-old went through a phase of pulling books off the shelves at random and tearing out pages. Now we have cabinets with doors instead).

I remember telling my wife a couple of years ago that we were probably going to have to become much more organized in order to thrive. Now the seven-year-old is pushing me to make that move.

Language, Humanity, and Autism

I've been reading an excellent book--You Are What You Say
by Matthew Bud.

In it, he talks about the power that language has in human lives. He quotes Fernando Flores as saying:

"In language we build our own identities, our relationships with others, the countries that we live in, the companies we have, and the values we hold dear. Without language we are mostly chimpanzees."

He then goes on to discuss Helen Keller and her experiences discovering the concept of language and all that it enabled her to do.

The lines that really caught my eye and inspired this post were:

"[language] allows people to become aware of themselves and of others and builds trust, intimacy, and, yes, suffering. We can't even imagine life without language."

When I think about my experiences with autism, especially my experiences with kids like the seven-year-old who lie on the lower-functioning end of the autism spectrum, an inability to communicate effectively is an enormous piece of the puzzle.

These two quotes cut to the heart of my experiences with my son. And at the same time, they don't.

The seven-year-old's ability to communicate with other people is incredibly limited. He doesn't talk; he doesn't sign; he's never yet managed to get the hang of PECS (Picture Exchange Communication System). My wife recently commented that he doesn't seem interested in learning to communicate.

His difficulties communicating very sharply limit his ability to take part in the general activities of the human race. But they don't limit his humanity, his claim to be a member of the human race.

A couple of years ago we went to visit my brother and his family in Austin. My parents and one of my uncles also came to visit at the same time. The seven-year-old had trouble with the change of routine and the unusual circumstances. He showed greater-than-usual obsessive "stimming" behaviors, things like jumping in place and throwing sand/gravel/rocks. Several months later my parents came out to visit us in Seattle.

The seven-year-old has had home therapists who come and do ABA (Applied Behavioral Analysis) with him in our home. After watching the therapists work with him, my mother commented about the difference between him in Austin and him at home doing therapy. She said that in Austin his behavior had seemed almost like a pet rather than a person, and had made her think of Hellen Keller. But when watching him work with his home therapists she said they reminded her of Anne Sullivan--the woman who taught Helen Keller to communicate.

The work that the therapists do with the seven-year-old and others like him are all driven around helping them express themselves and their humanity. Without that help, sometimes they barely seem like members of the human race to people who don't know them well--who haven't made the significant effort required to establish a connection with them.

That is the reason why so many parents of children with autism (myself included) go to such great lengths, sometimes virtually bankrupting themselves, in order to pay for therapy for their children. We want everyone to be able to see our children the way we do--in all their humanity, as full members of the human race.

Craving darkness

For a very long time now, the seven-year-old has preferred to sleep with the lights on. In fact, if it were up to him the lights would be on in the entire house while he sleeps. When he wakes up in the middle of the neat, he typically leaps out of bed and runs through the house turning on the lights and TVs in every room. He has a look of great distress as he does this; it seems like he is worried that something awful will happen if the lights are left off.

He has been a poor sleeper since he was about 18 months old. We've been given him melatonin supplements for five years, which helps some, and clonodine for 4 years, which helps more. Without medication he used to go to sleep any time between 8 p.m. and 4 a.m., and get up some time between midnight and noon. It was extremely hard on us.

Now, with the medication he generally goes to bed around 9 p.m. One night out of every three or four, he wakes up at night. He runs around turning things on. Sometimes he goes back to bed without a hitch, other times he's up for anything from an hour to the rest of the night.

I sleep in his room with him. We share a double bed. This seems to help keep him asleep. Sometimes I am able to convince him not to get out of bed when he wakes up, which usually means he goes right back to sleep.

We do everything we can to make the environment sleep-friendly for him. That is, to maintain the conditions that actually help him sleep rather than the conditions that you might expect will help him. The lights are on all night. The TV is on with a Sesame Street DVD playing. Fortunately he is OK with the sound muted.

As a result of all this, I haven't slept in a room with the lights off for quite a while. I've always preferred to sleep in a very dark room. I love the blackout curtains that some hotels have. Nowadays I find that have an almost physical craving for darkness at night.

Recently I tried hanging a blanket over the rail of the top bunk, creating a kind of curtain over part of the bed. This helped block out the light. It was particularly nice that it blocked it from shining on my face. It's hard to tell how the seven-year-old feels about it. Since he can't talk he doesn't tell us whether or not he likes it. At first I thought he liked it. The last week or so we haven't been so sure. He seems to be waking up more often and having more trouble going back to sleep.

Tonight as I was putting him to bed I noticed that the blanket had been pulled down from the railing. I guess that's a vote against.

Back to sleeping in the light.

More Baseball

We took the seven-year-old to his second Miracle League game this weekend. It was at a different park and there didn't seem to be quite as many kids this time. That might just be because it was on a bigger field and everyone was a little more spread out.

There was a team of teen-age boys there, they looked like they were 15 or so. The boys and their coaches acted as buddies. The seven-year-olds buddy was "Coach Mike". Coach Mike did a nice job of leading the seven-year-old around and trying to get him to pay attention to the game. He managed to get him to pick up the ball and throw it once while they were fielding.

One nice touch is that after the batter gets a hit, the pitcher tosses a couple of extra balls out onto the field for the fielding team to go after. They want to make sure that there is enough going on to keep the kids attention and give more of them chances to do something in the game.

The seven-year-old seemed excited about the game. When it was his turn to bat they offered him three bats to choose from and he was jumping up and down and squealing while he made his choice. I think that he is enjoying the process. It will be interested to see how he responds next week when we tell him that it is time for baseball and get him dressed in his uniform.

Baseball

Last week we made another bold move and signed the seven-year-old up for Miracle League baseball. Miracle League is an organization that runs baseball leagues for children with disabilities. Rotary Clubs are heavily involved and sponsor many of the leagues, including ours. Everything is free--the games are staffed by volunteers and all the kids get free uniforms and photos.

His first game was last Saturday. It took about an hour to get uniforms passed out and pictures taken before they went outside to the field. That was tough; they had to wait in a crowded gym, and the seven-year-old doesn't like crowded, noisy spaces. But he made it through without having a meltdown. He was even willing to put on the uniform.

Once they got out onto the field, every child gets a buddy who stays with them throughout the game. The seven-year-old's buddy was a silver-haired gentleman who looked like he might be in his early sixties. The game consisted of a single inning. Every child on each team gets an at-bat, and stays at bat until they get a hit. Some kids were able to swing on their own, either at the pitch or on a tee. Others had their buddy hold the bat with them hand-over-hand to swing. The seven-year-old's buddy held the bat hand-over-hand and basically swung for him.

I got a little worried when the brought out the batting helmet. The seven-year-old doesn't like anything to touch his head. There was a brief attempt at putting the helmet on him, and then the buddy took it and put it on his own head. I started forward to help, but they got it resolved before I got to the plate.

I don't think the seven-year-old had any concept of what was going on around him, but he got to be outside, and his buddy did a nice job of entertaining him. They spent a while jumping up and down in line, and then the seven-year-old was playing the the lanyard of his buddy's umbrella.

It was a reasonably successful morning. We're going to keep taking him and see how it goes.

On the phone

Last week the ten-year-old started asked to call my parents. He called them 6 times in 7 days.

I commented to my wife that this surprised me. She then related to me a conversation they had had with his psychologist. The psychologist had been asking him about times when he had been feeling bad and then started to feel better. One of the things that he came up with was that talking to Grandma and Grandpa on the phone had cheered him up the previous week.

Apparently he has seized on that idea as a well to feel better in general. He is also starting to branch out to other family members. He called my aunt and my brother over the weekend.

It is very exciting for us to see him starting to build a social support network.

A night at the theater

In a bold move, we decided to take the seven-year-old to see the play Busytown at Seattle Children's theater last week. I was a little nervous about it. We take him lots of places, but rarely to places where everybody is quiet and he needs to be quiet and still. We've taken him to movies a couple of times at a theater that does a monthly Special Needs Matinee. He does ok there, but he doesn't manage to stay seated the whole show; he spends some of the time wandering around the theater.

It got off to a rocky start. As soon as we sat down in our seats, he jumped up, ran down front, got up on the stage, and ran across the stage into the wings. I ran along after him, but the theater staff stopped me at the edge of the stage and said they'd bring him back to me. Fortunately, he cooperated with them and came back quietly. I spent the rest of the play either holding his hand or with my hand wrapped in his shirt.

When the play started, he paid he was quiet and attentive. He got a little agitated when they turned the lights down, but overall he seemed to be enjoying the play. He bobbed along with the music during the songs, and clapped when the audience clapped. About ten minutes before the end of the first act he got a little too worked up, and I took him out into the lobby for a few minutes. Then he went back in and was fine.

He followed the exact same pattern of behavior during the second act. When we came in from intermission, he jumped up again. This time, I was ready and managed to catch him by his fingertips and keep him from running off. He listened and watched, and again he got agitated shortly before the end of the act. I took him out and then brought him back in for the finale.

Overall, it was a very successful night at the theater.

What's the difference between a waste basket and a laundry hamper?

There is no difference. Not if you a seven-year-old with autism. Yesterday I emptied the waste basket in the bathroom. In addition to trash, I found 3 pairs of pants, 1 shirt, a water bottle, and a half-dozen plastic farm animals. This morning I was taking stuff out of the hamper to do laundry. In addition to the dirty cloths I found 5 shoes, 1 drinking glass, 3 dirty diapers, 5 candy wrappers, and a partially eaten bagel. Apparently the seven-year-old has been very busy.

Crazymaking

I'm experiencing what life would be like if we lived in 600 square feet. It would NOT be good.

Our house, built in 1971, has popcorn ceilings that contain asbestos. Recently, Younger Son, who has low-functioning autism, has started scraping it off the ceiling and eating it. We decided have it removed in the rooms where he can access the ceiling (he loves to be up high and climbs furniture; his favorite spot to watch TV is atop the wardrobe in the living room).  This is quite a project. Before the remediation company came we had to take everything out of the rooms where they were working, including the light fixtures.

The living room and two bedrooms had to be emptied, and the things in that 800 square feet of house stuffed into the remaining 600 square feet (plus the garage). All the rooms are overflowing. Younger Son, who hates change, is very distressed. 

He wants lights on all the time, and the light fixtures are gone. I ended up getting my shop lights from the garage. It was the only way to calm him down. Last night, after waking around 1 a.m. and realizing everything was different, he spent 30 minutes walking around the house carrying his laundry hamper. He set it down, then picked it up and moved it again. I think he was trying to find someplace to put it that would make everything seem normal. He had trouble sleeping and awoke twice more.

Tonight he and I are sleeping at my in-laws (they are out of town). It took him about an hour longer than usual to calm down for sleep. One of the last things he did was walk around the house holding his shoes and socks in his hand. He dropped them in waste baskets then took them out.  The second time, I realized what he was doing and led him to the laundry hamper. He put his shoes and socks in the hamper, he was able to lie down and sleep.