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.  

christmas colors

There's a popular system for regulating elementary school behavior. Good behaviors merit a designation of green. With lots of green days, a kid can earn a prize. A few bad incidents might merit a yellow or a blue. The yellow means you had an outburst, but managed to pull it together. Blue means you couldn't pull it together right away, but could eventually. Like soccer, red means you exhibited really bad, and basically unrepentant behavior. At school, Martin always gets either green or red. There is no middle ground.

It's the same at home. The past two weeks have been either heaven or hell. At times, Martin has been inquisitive, warm, and hilarious. He's learned all the first ladies. He's learning the vice presidents. He plays in a tent we set up in the backyard. Today, he invited a friend to go to the playground with him and, without prompting, thanked the friend when we dropped him off afterward. There are moments when you look at him and forget that he has an autism diagnosis. There seems to be nothing in between him and the rest of the world.

But then it comes back. Usually we have no idea why. But something will set Martin off. And then there is scratching and hitting, yelling and kicking. He's so frustrated about something, but he can't say exactly what. And even when he can express his desire, he can't handle it if the request is denied. For instance, he demands that I carry him. I simply cannot do it anymore. He's just too big. When I tell him I can't, you'd think I just denied him candy for the rest of his life, or oxygen. The response is so instant and so dramatic. And I can't do anything. I certainly can't give him what he wants. And I can't seem to find a way to convince him that life might be OK if I don't carry him.

So even though it's only September, life is red and green for us.

try, try again

So it continues. We were having the most wonderful Sunday. Martin made it through his first visit to a new Sunday School class for children ages 6 and 7. We went out for breakfast afterward. Martin ate lots of pancakes and was polite to the waitress who served us. In the afternoon, we took a long hike in a local park. Martin climbed fallen trees, found old bird feathers, and gathered some acorns. It was all so lovely.

Then we went to our Sunday evening dinner group. And I must admit some of my own mistakes here. I was watching Martin's sister and also trying to eat, so I didn't always have my eyes on Martin. I noticed a few times that he was flustered about sharing some balls that he and other kids were kicking around the yard. I saw that the play was fairly rough and tumble. Martin took a whack in the face from another child. Then he delivered one in return. I took him aside for a time out, mostly hoping that he could cool down. Things didn't go as planned.

Martin refused to sit down. He kept jumping up at me and flailing his arms. Hoping to get him away from other people, I took him to a small side room. There, things got worse. He started to kick me. I couldn't get him to sit in a chair for even a moment. He even spit at me, which was a new low. He was utterly out of control. Since my husband was at a meeting, I had to ask another man at the group to hold Martin for me. I couldn't manage him myself.

Being held by someone other than a parent made Martin even more mad, or afraid, or something. I left the room, trying to figure out what to do. Within minutes, I decided that we should just go home immediately. I went back to the side room to get Martin and asked if he was ready to walk to the car. He said that he was, but he was still crying. He told me that he didn't want to be held, that he just wanted to go home. We did go home. I cleaned up his face. We ate some cereal together. And then he laid beside me in bed. Soon he started to hide under the covers, pretending to be in a chrysalis. He emerged as a butterfly, flapping his arms with a big smile on his face. For him, it was as if the events of the hour before hadn't happened. I, however, can't seem to forget that my kid spit on me.

I used to think that we were working toward something called "better." But I'm beginning to think that such a notion is only a set-up for a letdown. Every success Martin has leads to more integration with the "normal" world. And most of his new encounters with "normal" have not gone well. I know we have to keep challenging Martin to try new things, otherwise he'll never progress. But this process sometimes makes me think that we're destined for intermittent and never-ending experiences of disaster. Every new encounter is a potential trauma for him, and therefore, for us.

Some days I feel strong enough for it. Yesterday and today, I don't.

jekyll and hyde

Martin is really wonderful. Before falling asleep, he tells me that he plans to dream about boats. He pretends to enter a chrysalis and emerges as a butterfly. He reads books about the first ladies to his little sister. He tried a piece of lettuce last week.

But then he is awful. Instantly awful. As far as I can tell, he becomes awful the moment I say the word "no." I've been hit, kicked, and screamed at. His teacher has also had to deal with hitting and kicking. He just turns on a dime and your left there, suddenly, being accosted by a 6-year-old.

During the summer, we took a break from the behavior counselor that Martin was seeing. And when we returned home, we thought we might focus our concerns on Martin's eating issues by spending some time with a therapist who helps kids become more open to food. But I think we'll be heading back to behavior counselor. It's good that we can do that, but it's one more appointment to add to our week. It's one more thing to ask Martin to do instead of chilling at home reading president books and eating graham crackers.

Despite the fact that this new appointment will stress out our schedules and keep Martin more busy than we'd like, we simply have to do it. He's clearly struggling - and failing - to keep it together when he feels challenged. So we start next week and hope for more Jekyll than Hyde.

green day

Things were bad. Martin spent several days in a total funk. He was excited to go to school, but acted out once he got there. He came several days in a row, reporting to us that he had a "red day." Martin's teacher uses color codes for discipline. Red is the worst. It means a student must write an apology note.

After several red days and after Martin's terrible behavior at home, something changed. He slept about 12 hours one night. And his teacher - genius that she is - tried a new system of rewards with him. Ever since, he's come home reporting of his "green days," the very best you can have. He's been much nicer to us. Things are getting better.

In other news, I think I've happened upon an awesome career for Martin: Japanese steak house (JSH) chef. On a recent visit to a JSH, I noticed that the chefs do the same thing and tell the same jokes over and over. It's a funny little routine, requires a certain skill set, and can be done successfully over and over again in exactly the same way. Perfect for autistics. Now, I'm not sure about the whole dealing with customers part of the job. But I thought about Martin having a life where he can do something relatively fun, amuse himself, and repeat ad naseum. Maybe?