An open letter to the members of OK Go

Dear Damien, Tim, Dan, and Andy:

I know you by name. I watch your videos all the time. Your pictures hang in my living room. But I'm not a creepy stalker. I'm simply the mother of Martin, who has made you and your music the subject of what I call "autistic devotion." His past devotions have been United States presidents and maps of Africa. These devotions include intense study as well as creative elaboration. And while your own work is already elaborate, let me list the ways Martin riffs on you:

1. Martin has built you out of legos. The lego figures wear different outfits that correspond with the costumes in your videos.

2. He uses Dungeons and Dragons figurines to recreate the marching band formations from the "This Too Shall Pass" video.

3. He learned the xylophone part to the same song and plans to play it at an upcoming church talent show.

4. He built the car from the "Needing/Getting" video out of legos. He drives it all over our house singing. He would also like to build a machine that includes all the instruments from this song so that he can play them all at once.

5. He has drawn the parts of the Rube-Goldberg sequence from the second "This Too Shall Pass" video on a roll of paper. He can draw it from memory.

6. He has planned your visit to Austin and designated sites for you to sing your songs. He wants you to recreate the "Here It Goes Again" treadmill sequence at our nearby YMCA. He's still figuring out how to procure the dogs necessary to recreate "White Knuckles." He's stumped about how to get marching band uniforms. He's hoping Goodwill might deliver.

7. I could keep going.

On the one hand, I would love for him to meet you. To that end, we are taking him to your upcoming concert in Austin. On the other hand, he would be paralyzed by the fact that you are real people. In his mind, you are only what he has seen on the screen and heard with his ears. In his perfect world, he would use you like real-life figurines to recreate all the scenes he loves. He would not know what to do if you expressed ideas of your own or if you resisted his plans.

This is why I never attempted to get him a handshake with Obama, even though everyone we know has said it would be great. "He loves presidents. You should do it," they say. It's true that he loves presidents and that his autistic devotion has led him to learn more facts about presidents than anyone else I know. But I also know that Martin would want to tell Obama what to do. To ask only questions that interest him. Martin would not follow Obama's directions. He would not answer Obama's questions. And my guess is that a president would not appreciate that.

So Martin dreams of meeting you, but not a real-life meeting. He envisions a meeting that fulfills the dreams of his autistic devotion. In that sense, he loves you like teenagers love. Intense, but not really grounded. The stuff of great love letters, but perhaps not real-life encounters.

In conclusion, I love your music and crazy videos. But my kid loves you more and with a kind of purity and energy that we adults can only remember fondly from our youth. If you'd like to meet your biggest fan and can accept him on his terms, we'll be at your concert in October.

All the best,
Rainmom

your reward shall be in....the lego store

People, things are getting better! And they were really bad there for awhile. The list of interventions over the past few months includes a new doctor to manage medicine, a new counselor, a new ABA therapist who comes to our home, a social worker, and a few occupational therapy sessions. It has taken a lot of time. And money. But people, we are starting to see some results.

Martin went to church today and had fairly good behavior. He has not been to church in weeks because he knocked someone over and regularly yelled and hit. Although school was a nightmare for him back in April and May, he now says he's looking forward to its start tomorrow. Although he sometimes still struggles with following the social rules of the world, he has been going to places like the pool and the YMCA without much incident. It feels like a miracle.

To be more scientific, that miracle has been realized through ABA therapy. You can find a good synopsis of this once-controversial, and now generally accepted therapy, as part of this article. Most basically, ABA involves breaking down daily tasks and behavioral expectations into tiny chunks. When children perform one of these small acts correctly, they receive rewards. When Martin had ABA therapy as a 4-year-old, he was rewarded for answering yes-or-no questions and making two-word sentences. He was then motivated to work for the rewards offered for three words and four and so on. With ABA, Martin learned to talk.

Martin's current ABA therapy is focused on behavior. It establishes a set of expected (or good) behaviors as well as unexpected (or bad) behaviors. As part of the therapy, we check in with Martin every 15 minutes of the day. He gets checkmarks for every 15 minutes of expected behavior. When a certain number of checkmarks add up, Martin gets a reward. On the flip side, we ignore bad behavior. Even if Martin screams at us or hits or kicks, we pay no attention to it. The goal is that Martin learns that bad behavior does not get him what he wants. Good behavior does.

Martin is currently at the lego store because he made it through church this morning. I know that some of you might think, "Wow, buying kids legos to fulfill basic family obligations? No way." If I didn't have a kid with autism, I'd feel the same way. If a kid can apprehend the rules parents can and should create the expectation that these rules be followed. But what if your kid can't apprehend the rules? What if no amount of explanation gets through? What if the only way to learn it is to do it BEFORE understanding it?

Since Martin got through church today and received a reward for it, it will most likely be easier for him to go next week. And we won't need as big a reward as incentive. Perhaps some ice cream after lunch. The hope is that rewards will no longer be necessary within a few weeks. And then we'll have a kid who understands that he's capable of going to (and maybe even enjoying) church.

Right now, we're still breaking down our days into 15 minute blocks. But soon it will be 30 minutes. And then hours. If I really let myself dream, I think about a time in the near future when there are no charts and checks necessary. And Martin is happy. And I'm happy. I will buy a lot of legos now in order to have the chance of such a day in the future.

You can go your own way

https://www.youtube.com/watch?v=6ul-cZyuYq4

I just returned from a blissful vacation hiking the California coast. The day I got home I took Martin on a special outing to the roller rink. Martin is an excellent skater. He's had roller skates for a few years and loves to zip around the neighborhood. Everyone smiles when Martin skates.

Even though Martin skates quite often around our house he has rarely been to roller rinks. It was a huge delight for him. When we walked in the door his eyes grew big. "This place is amazing," he said. I helped Martin lace up his skates and started working on my own. Before I could finish mine, Martin was out on the floor.

When I looked up I saw the most magical and scary thing. 150 people skated counterclockwise while Martin went the other way. As people flew by him he simply charged forward with a look of joy, howling at the top of his lungs. He was thrilled. I was fascinated and terrified. 

Martin seemed to have no idea that everyone else was doing things another way. That's quite typical with autism. Folks like Martin simply don't seem to apprehend the rules. There is something quite beautiful about it. But there are also dangers. I rolled onto the skate floor, caught up with Martin, and asked him to pay attention to my eyes. I told him that everyone needed to skate the same way. He would have to join the others skating counterclockwise. He looked at me with total surprise and said okay. He began to skate with everyone else and things were fine for a little while. But after he took a break and entered the floor again, he went the wrong way once more. Again, I told him he needed to go the same way as everyone else and again he looked at me with a little surprise and said okay. 

With autism, you have to say the rules over and over and over. Not only can you not trust that folks with autism will apprehend the rules on their own, but you also can't be sure that the rules will stick in their heads once you've communicated them. Your best chance is to make the rules available visually by creating a social story. Social stories are little books in which the rules are written down and illustrated. I've written many social stories over the past few years: social stories about getting on airplanes, social stories about where it's appropriate to pee, and social stories about going to the zoo. But at the roller rink I didn't have the capacity to make a social story and I could tell that the rules I told Martin with just my voice were never going to stick. If he's ever to learn that he needs to skate counterclockwise, he'll need to see it written down. 

Our society let's certain people go their own way. Great artists. The filthy rich. Toddlers. It's also the case that certain people feel they have no chance to do things in a different way. Imagine if Martin had brown skin. Imagine him growing up into a tall teenage boy who doesn't follow every rule and might not understand when a police officer commands him to do something. It's a question of privilege. Who's allowed to go their own way? By our society? By the police? By the roller rink staff?   

Bells and ears

Last night, I cried like a baby in front of 40 people at a public pool. The day itself had not been terrible. In fact, some good things happened. But I was tired and someone said something. And it was too much.

Perhaps it was too much because yesterday at 7am Martin had to get his annual blood draw to make sure that his medication is having no adverse effects on his body. I did not attend this blood draw. I just couldn't. My husband and father-in-law did the work. It wasn't pretty. There were full-body holds and lots of screaming and yelling involved. But the techs got the blood. And then the guys went out for breakfast. Martin came home and slept.

Perhaps it was too much because at 10:30 I took Martin for an occupational therapy evaluation and we were able to complete about 25 minutes of what was to be a 90-minute appointment. We were in a new place with new people. These people asked Martin to do things like bounce a ball, jump on a trampoline, and tie his shoes. Even though the appointment didn't go so well, the therapists were able to make an evaluation and we will get started with some appointments next week.

Perhaps it was because we had a two-hour appointment in the afternoon with an ABA therapist. She was AWESOME. When we called her last week and explained our situation, she recognized our struggles and worked around the usual wait-list for services. She will come to our home for appointments. She is drafting a behavior plan to help us overcome and end Martin's worst behaviors: the kicking, screaming, throwing things, hitting, and pinching. But she was clear with us. Things will get worse before they get better. The behavior plan calls for Martin's caregivers to do things that will completely piss him off. She told us to buck up for the next few weeks.

Perhaps that's why - by the time I got to the pool last night - I just needed for my kid to swim happily and freely. I just needed to sit by the poolside quietly and watch him enjoy himself. And so when a parent came to me to tell me about the way Martin had "traumatized" his daughter at the pool several days ago and when that parent kept repeating this information over and over even after I said that I had heard him and would take care of things - well, I just didn't have it in me to keep it together.

While I don't get to read much about medical care outside of autism, I'm really interested in it. I've heard about two studies recently that have made me think a lot about my own situation. In the first, researchers found that parents of children in NICUs experience months of PTSD-like symptoms even if their child survives and eventually flourishes. Just the experience of being in the NICU - with its constant alarms and sense of crisis - leaves parents scarred for months. Living with the possibility of death at any moment makes these parents of newborns more like Iraq veterans than like those of us who have never stepped foot in a NICU.

My friend is the researcher for another study. She studies palliative care techniques and their effects on families. She devised a study - informed by therapeutic responses to veterans with PTSD - in which family members who have made end-of-life care decisions get to tell their stories to an empathetic listener with no connection to the ill person. My friend has found that family members feel better and show fewer symptoms of trauma when someone just listens to them without judgement.

Thinking about these studies helps me understand why I broke down at the pool yesterday. It had not been a terrible day. In fact, I was incredibly grateful to have gotten the ABA therapy process initiated. I went to the pool hoping for a little moment of happiness for both Martin and myself. Instead, I got talked to. The alarm bells went off. It was a crisis when I wasn't expecting one. And when I tried to respond, the parent wouldn't listen. And the parent certainly judged.

The takeaway? Let's not be people who set off alarm bells. And let's be people who listen.

PS - The movie is coming along!

When you can't write and can hardly move forward, make a movie!

There is some progress to report. The new behavior chart from the therapist is making a difference in Martin's choices and behaviors. It's not a dramatic difference, but we've seen some changes. We have finally worked through the process of identifying and scheduling an in-home ABA therapist's visit and some occupational therapy. I have also submitted an appeal to my employer's office that handles insurance coverage (or in our case, lack of coverage). Things are happening.

But it mostly feels like they are not happening. Yesterday, Martin still had some explosions. He kicked and pinched me at a public pool. He yelled at some children who stared at him in disbelief. His behavior at church on Sunday was the same old pattern of quiet interrupted by inexplicable physical and verbal chaos. Getting the new therapy appointments on the calendar seems to have taken forever. The insurance appeal will surely be turned down. And I can't finish a paper that's supposed to be drafted in less than a week.

So I am making a movie. Completely rational choice, right?

And I'm trying to make it through these long days with Martin, hauling him from playscape to pool to museum to YMCA in an effort to keep him busy and eventually make him exhausted.

You're all invited to the movie premier a few days from now.

The Long Summer Days

Martin had a pretty good day. After grunting and growling in the early morning hours, along with socking his father in the side of the head, Martin pulled himself together and managed to have a fairly happy day. Here's how we managed to make that happen:

8:00am - Breakfast
8:15 - Second breakfast
10:00 - Visit nearby children's museum
1:00pm - Go to the Lego Store to buy a few accessories necessary to create a set of Lego people who look like U.S. presidents
4:00 - Swimming at neighborhood pool
6:00 - Walk and wagon ride along Lady Bird Lake boardwalk
8:00 - Ice cream parlor

You might be thinking, "Wow, that's a lot of activity for one day. Museum. Store. Pool. Lake. And an ice cream shop?" But that's what it takes to fill up a summer day with Martin. And this wasn't even a particularly busy day by our family's standards. Further, we have to stay this busy every summer day, not just on weekends.

Again, you might be wondering, "Why doesn't she just send him to a day camp or summer camp where the schedule is jam packed with everything from macrame to boating to romanticizing American Indians from dawn til dusk?" That is an excellent question, dear reader! The answer is that I can find only a few camps (daytime or sleepaway) that would take him and they cost A LOT.

"How much could it be," you might be wondering. Or, "It's your child. Isn't he worth it?" Let me tell you how much it is. I have found one possible day camp in Austin. For 12 hours a week the cost is $350. That's only for Martin. I would have to find other arrangements for his sister or I could send her along for another $325. I'm a middle class person with a nice job, but I can't pay more than $3000 for even a terrific facility to watch my kids for 48 hours of work time. Same problem for sleepaway camp. I have found three camps that can not only accommodate Martin, but also address his particular needs. They look incredible. The cheapest one is $1200 for a 5 days. Is my child worth that? Yes. Is summer camp worth that? Unless it's that awesome camp in Dirty Dancing and Patrick Swayze comes back to life to work there and look earnest, then the answer is no.

So I have a situation in which I must find a way to keep Martin very active and busy all summer long. Luckily, a friend from church volunteered to work as a part-time babysitter four mornings a week. I get the kids ready in the morning. She comes over, takes them on outings, and keeps them busy while I try to write a few pages, read a few chapters, or plan a few syllabi. I then take over and keep the kids busy in different ways until my husband comes home at dinnertime. This schedule is unrelenting. Saturdays and Sundays require even more effort. It is utterly exhausting.

In an unusual action, I recently wrote to my in-laws and asked them to come help us. My father-in-law drove 1400 miles in two days and arrived here yesterday. Just having one more adult around makes this constant activity a little easier. He took Martin to the museum. Then my husband led the outing for Legos. Later, I hustled the kids to the pool. I'm so lucky that my father-in-law has committed to staying for two weeks. Just knowing I won't have so many hours each week in which I'm solely responsible for being mother, camp director, tour guide, cook, and psychiatric nurse is a huge relief.

If your kids have quality, affordable options for care over the summer, hug the people who do this work. We need more of them and more resources so that every kind of kid has similar options.

 

Dr. Turner's Manure Versus the $2095 Sedative

Dr. Turner served as my family's doctor. He was a general practitioner who also functioned as obstetrician and pediatrician. He worked out of a small brick office with his only other staff member, a nurse who also handled reception and bookkeeping. The office was beside a shoe repair shop run by a cute old man named Stanley.

To make this evocation of the past even more quaint, I offer two details. First, Dr. Turner made house calls. When I, along with my two siblings and mother, came down with chicken pox, Dr. Turner headed out to our house rather than make my poor father schlep us all into town. Second, Dr. Turner accepted cash as well as goods for payment. We paid most of our medical bills out of pocket. Along with cash, my dad showed up every spring at Dr. Turner's garden with a truckload of manure from our farm. They called it even.

The mid-70s. An era when you could still pay your doctor with manure. I thought of Dr. Turner a few days ago when I received a bill related to Martin's recent emergency room visit. In mid-May, we followed our (former) neurologist's advice and tried to ween Martin off a drug he takes for impulse control. Our neurologist wanted us to focus on behavioral interventions rather than rely on medications, as well as foreclose on the possibility of negative side effects from the meds. We followed his advice and disaster ensued. Martin became uncontrollable. He screamed. He hit. He kicked. Most incredibly, he ate leaves off the neighborhood sycamore trees.

A few days into our experiment off meds, Martin experienced an extreme tantrum. I thought he might break the door I locked between him and me. I took him to the emergency room, explained the situation, and asked for a psych consult.

What's funny about emergency rooms is that the staff interact with you as if you are not in the midst of an emergency. At least three different staff people slowly took us into different rooms. Martin's blood pressure was taken at least three times. As Martin became increasingly agitated, a sage nurse looked at him and said, "Martin, you're not allowed to hit anyone." As if simple commands worked in this situation. My husband and I tried to keep Martin calm as myriad staff members came into the room, repeating questions and examinations. There was no doctor in sight. We asked for wifi access so that Martin could watch a movie that might soothe him on our phone. Somehow, the wifi was impossible to access. A clueless nurse offered us a DVD player with some random movie. "I don't think you understand autism," I told her.

Things got a lot worse before they got better. Martin started hitting and kicking again, which promoted the charge nurse to call the hospital police. Now, Martin faced men in uniform who were there to hold him down if he continued to act out. Finally, a doctor arrived into this messy situation. The doctor called for a neurology consult. It took forever. Finally, the doctor advised a dissolving sedative to calm Martin down. It took six of us, including the three hospital police, to hold Martin down and get the tablet on his tongue. Martin was terrified. I was mortified. Trauma all around.

We saw at least a dozen healthcare professionals (as well some security professionals) during that visit. The ER doctor was never able to contact our neurologist to ask about his recommendation to go off the meds. There was no coordination between the two, despite the fact that their offices are about 100 yards apart. Of course, these medical professionals have no contact with Martin's teachers and the educational professionals who create his alternative learning plans. And these folks have no contact with the behavior therapist and horse therapy people we also work with. I recently had an appointment with a county office that offers a sort of case manager service for kids with autism. It costs $250 a month. They don't accept insurance.

I miss Dr. Turner and his nurse and the shoe repair man next door. Dr. Turner delivered me when I was born and I attended his funeral. I miss the attention he gave his patients. I miss my doctor who knew my story. At the same time, I know that Martin would not have fared well in the 1970s. A child who showed his lack of capacity to speak would have been recommended for institutionalization. I would have been blamed for being a "refrigerator mother."

So I ought to be (and basically am) quite grateful for the therapies and services available to us. Martin didn't learn to talk the way most of us do, but he did once he experienced alternative methods. Our healthcare and educational bureaucracies make this possible. Martin has a chance to flourish because of these expanded bureaucracies.

But no one loves a bureaucracy. We usually distrust them and feel slighted by them. When we see a charge of $2095 for an ER visit marked by lots of trauma and one lousy pill, we feel robbed. A friend of mine is writing a book on the lure of small things in American history. I thought of his work when I got the bill and thought of Dr. Turner's truckload of manure. I long for the small and simple even as I benefit in substantial ways from the large and complex.

Maybe a truckload of manure can take on new meaning in our new situation? Perhaps I have a delivery to make to the ER?

She's Back: Or, Rainmom Describes Varieties of Stink Eye

I wrote this blog about Martin and autism in 2009 and 2010. I stopped during a particularly difficult time in Martin's life. And even when things got better, I failed to start writing again. The blog has sat dormant for four years.

Things did get better for awhile. Second grade was good. Third grade was good. Fourth grade, however, brought serious challenges and real setbacks. Aggressive behavior. Self-awareness of disability and difference. Medication difficulties. Even an emergency room visit.

But even that disastrous medical intervention did not prompt me to take up blogging again. Instead, it was my experience today of receiving not only some serious stink eye, but also the chance to witness the transformation of that stink eye into a look of pity typically reserved for baby seals and child refugees.

Let me explain. Today, Martin had a dentist appointment. Dental care and autism are no easy mix. Consider the challenges: weird environment, people in masks, instruments jammed in your mouth. Martin was almost six before he had a thorough dental exam and cleaning. That delay took its toll on his teeth. Just last year, Martin's dentist recommended plaque scraping, a crown, and sealant for some of his more vulnerable teeth. First, the dentist tried laughing gas to relax Martin for the procedure. It didn't work. We then rescheduled and employed the big guns: anesthesia. Dental success.

Martin's appointment today was his first cleaning since last year's procedure. He was already having a tough day. He didn't want to go. Like a fool, I didn't cancel. I pressed ahead. We arrived at a lovely office. The staff was terrific, even when Martin shouted and growled. We tried our best to make him feel at ease. At times it worked. The dentist cleaned eight of his teeth and gave the rest of them a careful look. I count that as a small success, overshadowed unfortunately by Martin taking a swing not only at the dentist, but also at the dentist's wife.

At the appointment's end, I left in despair. I decided to take the kids to the nearby grocery store that has a playground for shoppers and their kids right outside. We arrived. I escorted the kids to the play area, watched them begin to run around, and then told them I was stepping inside to pick up a coffee. I was gone for two minutes. That was a mistake. I shouldn't have left for two minutes, even though all I wanted in the world was a nice coffee drink to sooth my sadness about the dentist office. I shouldn't have left.

I came back to find an approximately 13-year-old girl gaping at me. As I got closer to the playground's edge, she asked me if the boy wearing the black shirt was my son. I said he was. She then informed me that my son had made her little sister, approximately age eight or nine, cry. "What did he do?" I asked. She replied that he had chased her and growled at her. The younger sister then looked at me, tears falling down her cheeks. She was being held by her mother, whose back was to me at the time. At this moment, the mother turned toward me and delivered a serious stink eye. We are talking Meryl Streep plus Lucille Bluth added to that girl from Juno. "I'm sorry," I stammered. "I will take care of it." At this point, the stink eye transformed into what only can be called a frozen stink eye, by which I mean the effort the stink eye giver takes to freeze the position in order to be sure the offender has seen it.

I walked over to Martin. I asked him what happened. He admitted that he had chased the girl and growled at her. He said that she bothered him. I take this explanation with a grain a salt. Martin thinks everyone is bothering him, that everyone is laughing at him. He is almost always wrong. I tell him that his actions scared the girl and that he needed to apologize. He walked with me over to the stink eye/gaping/tearful trio and said, "I'm sorry that I scared you. I didn't mean to." They looked confused. One of them said, "OK."

Martin and I walked away. But the stink eye remained. It stayed in place as Martin began to play again. It prevailed as I drank my cup of coffee, which was now no solace, but rather a sign of my mistake. As we prepared to leave, I saw the stink eye. It was still there! The mother was still mad at me. I decided to pull out the big guns once again. As I passed by her, I said, "My son is on the autism spectrum. Social situations can be challenging for him. I thought he'd be OK for a minute while I went inside, but I was wrong." The stink eye disappeared. Concern, sympathy, and sadness replaced it. Mother Teresa-face. I-feel-bad-about-the-Holocaust face. "It's OK, then," she reassured me. I wasn't a bad mother. I was a pitiable one.  

This encounter destroyed my day, even more than the terrible visit to the dentist. I'm used to Martin's aggression. I'm used to failed enterprises. But I never get used to how people respond to autism. I've encountered everything from screaming to disdainful looks to half-baked dietary advice to saccharine-tinged smiles that mean to be nice but really say, "Thank God it's you and not me." And for those of you who wonder what you can do, I can only say this: from my perspective there is nothing you can do. There is no right response. I will probably react negatively to just about anything you offer. Because it is me and not you.

That's why I stopped writing in 2010. Because I could no longer tell this story to people outside of it. And I'm not really sure why I'm trying again.