they are getting older and it makes me sad sometimes

Elliott turned four at the beginning of the month. There were a lot of people at the party, and he was overwhelmed at times. For several days after the party, his behavior was off--more screaming and general pissiness than usual. This is what generally happens after large events or get-togethers so it wasn't too big of a surprise. However, this was the first birthday during which he allowed everyone to crowd around him, stare at him and sing him "Happy Birthday." It was also the first time he blew out his candles at one of his birthday parties. Two years ago, he screamed for the first hour or so of his party and then slept the rest of the day. He used to shut down completely. But this year, he truly enjoyed most of his party.

Benjamin has lost his front teeth and I didn't realize how sad this was until after it happened. Suddenly, he looks 15 years older. It doesn't help that he is as tall as a small adult (say, my Mexican step-grandmother, Diegolina). Then, two days ago, he informed me that he was too old to take baths now, that from now on, he'd be taking showers. So he took his first voluntary shower (i.e., I wasn't hosing off vomit), and he laughed the whole time, his eyes closed as the water sprinkled all over him. "I'm going to take showers from now on," he said. This, however, meant that Elliott had to take his first bath alone in his memory. "Where's Ken-Ken?" he asked, sadly. Ben dutifully sat next to the bath and talked to Elliott, but it was the end of an era, all in a matter of minutes, and I wasn't prepared for it.

There's that book that I always thought was creepy, I'll Love You Forever. The mom crawls into her kid's window when he's like 20 and picks him up and rocks him in her arms. What a creep, right? Yeah, well I'm going to be that mom one day. And I fully expect my adult sons to creep into my room when I'm an old lady and rock me to sleep. You hear that, kids? Mom's crazy. Indulge her.

getting my groove back

I was really overwhelmed on Monday when I spoke with the lawyer regarding Elliott's case and his school district. I cried and thought and cried and thought and talked and talked with Ryan. I emailed all of my crazy awesome mom-of-autistic-kid friends on Facebook who know so much more than I do about all of this stuff. I have decided to stay in Redlands for now, not to hire the attorney, learn the law myself and advocate for Elliott as best I can. I'm prepared to politely but assertively take on this district and go to mediation and due process if we need to. I'm ready to attend school board meetings and notify the newspapers as well. I'm motivated and therefore less depressed about it all. Next Friday is the big meeting. Bring it on.

rise to me

The Decemberist's lead singer wrote this about his son with autism. It makes me cry.

when all of your options suck

I went to see a lawyer today and though he was telling me stuff I already kind of sort knew in the back of my head but had suppressed, it was overwhelming and I cried in his office. It was embarrassing. He told me that he was expensive. He told me that Redlands Unified is one of the most difficult districts to work with in terms of autism education. He asked me if I was attached to living here. He gave me my options:

1) Stay in Redlands and hire a lawyer for a lot of money and fight the man. This will likely be long and costly and frustrating because this IEP team is particularly undereducated and overenthusiastic.
2) Move. Go to a district that is better equipped to handle the needs of kids with autism and more likely to include him in a comprehensive program. Even if we'd need to retain a lawyer, it would be minimal. Our options? Etiwanda and Riverside.
3) Keep doing what we're doing. Knowing that Elliott isn't fully getting what he needs or is entitled to. Knowing that this district sets low expectations for kids with autism and doesn't provide those kids with comprehensive, inclusive, appropriate education. Sure, we are getting some of this for him, but I know it's not what it should be. It's been a stop-gap measure.

I don't have a lot of money. I don't have any money. I don't want to move. I don't want to have to uproot Ben and Elliott. My stomach is all tied up in knots over this.

Also, we found bed bugs in our room last night. And Ryan suffered a neck injury. And I started my period today.

Ugh. Elliott's IEP is overdue, and I don't even know what the next step should be. But I'm pretty sure those bed bugs are regretting ever meeting me. I spent a full four hours today dealing with those little bastards.

e's birthday party

So here are some ideas for gifts for Elliott.

My wish list from Super Duper Publications (games for kids with autism): http://www.superduperinc.com/myAccount/wishView.aspx

An ipod shuffle (which we'd load with kids' songs for him).

A kids' boombox with a microphone.

Fisher Price record player...the vintage one (we're going to hunt this down...I think he'd love it!)

Cars or trains

Two tickets to Vegas

Thanks! Love you all. More to come probably. :)

half-marathon

For the past 9 months or so, I've been fundraising for autism research and preparing to do the Surf City Half-Marathon in Huntington Beach. I raised almost $1400, thanks to the generosity of my family and friends. I trained for 12 weeks to prepare. The night before the race, I got a text from one of my friends asking me if I got my bib yet. I just figured I'd get it the morning of the race. I wasn't too concerned until, as I was finishing loading music into my Shuffle, I looked for the race day instructions. And there in bold it said: There is NO race day pick up.
I started freaking out. I cried. I emailed everyone on our team. I hyperventilated and I may have thrown something. Then, I got a call from someone on the team who I hadn't met before and she kindly told me to show up at 5:30 a.m. to beg for my packet. I was so grateful, but still had a hard time sleeping.

So I woke up at 3 a.m. to drive to the beach. I got there at 4:30 and waited outside the tent until it opened. I was so relieved when they gave me a bib number! I could race!

13 miles is long. And I'm sore. Ryan met me at the end and he, I, and our friends from our team had a bunch of beers and hamburgers together. The fog cleared and it was 70 degrees and beautiful.

I'm very proud of myself for actually doing this. In some weird way, training for this and raising the money makes me feel like at least I'm making some contribution to help Elliott and other people with autism. On top of that, I ran it in 2 hours and 8 minutes, which was way faster than I expected!

It was a beautiful day.

I just read the book Room

by Emma Donaghue and it kind of blew me away. It's a simple book, in a way, but it's written from the POV of a 5-year-old, and, given that my kids are 6 and 3, I guess I could relate. Also, the 5-year-old is very different and very special and very sensitive, all of which characterizes my two boys, and I just connected with it. It's also brilliantly written and inventive and layered. I just loved it.

effing kaiser

Well, I met the new Kaiser autism doctor today. She is really nice and seems really intelligent. But as soon as I told her I'd like regular speech therapy for Elliott since he's extremely behind, she shut down and said that Kaiser doesn't consider this a medical need so much as an educational need and that they'd only cover 2 sessions. Now, correct me if I'm wrong, but autism is a neurological (THEREFORE MEDICAL) condition.

There is this wonderful woman who provides a step-by-step guide to getting services from Kaiser. It is possible but it's so frustrating that they make you jump through hoops and their default mode is to not help autistic kids. What about parents who can't fight or don't realize they can?

The doctor said something like, "I know this isn't ideal, but..." It just makes me even more irritated because I know that she knows this is wrong.

so...

I've been gaining (a lot of) weight despite training for a marathon. I have my period every 2 weeks and my mood is all over the place. Ryan's had a migraine/sinus infection the whole weekend. We both went to the doctor today to figure out what the hell is wrong with us. (Good luck with that, buddy.) A bangin' start to the New Year. But tomorrow we are taking the kids sledding, which could be a nightmare, but I'm hoping will be fun. Wish us luck. No New Year's resolutions for me this year. I'm going to take it one day at a time. I'm feeling a lot better though. :)

happy new year, you guys

I'm in a funk but I'm trying not to be. Hope this year brings great things for all of you. Ryan put this song in my head today:

happy new year

it's christmastime, it's christmastime

On Christmas morning, Elliott woke up around 4 a.m. Not because he was excited to open presents, but because he was having nightmares again. Once every few weeks or so, he has the nightmares from which he can’t recover. Tears stream across sticky cheeks. He aggressively sucks his thumb. I fold my 5’10” frame into a tiny plastic fire truck bed alongside him.
“Do you want a hug?” I ask.
“Yes,” he says.
I hug him and he violently throws my arm away. “No, no, no!” he screams.
I move away from him, attempting to widen the space between our bodies.
“Mommy, mommy,” he says.
“I’m here,” I tell him.
“I want Mommy!” he screams.
I don’t know what he wants. He plugs his soggy thumb back into red, swollen lips. He examines his free hand as it moves through the dark. He seems to relax. I try to fall asleep, but he screams again and the routine starts again, lasts for hours. In the morning, he wants nothing to do with me. It is Daddy, Daddy, Daddy. I ask him for a hug. “No,” he says, looking past me.

There was so much preparation. I shopped for hours online and in stores, bought video games and board games and books and puzzles and toys and art supplies and stocking stuffers. I wrapped presents until my back ached. My husband and I took the boys to see Santa Claus at a busy mall two days before Christmas. The line was an hour and a half. Elliott squirmed and whined and I dreaded what was to come. Would he throw a full tantrum before we even got to the front of the line? Kick or hit Santa?
Santa’s throne was in a dark, tiny hut. Elliott doesn’t like to be in closed spaces, especially unfamiliar ones. We were informed early on that no outside cameras would be allowed and that we’d be spending at least twenty-five dollars for three photos. Benjamin, my six-year-old, was thrilled to see Santa. He promptly told him what he wanted, tilted his head at a forty five degree angle, and smiled charmingly. Elliott looked scared at first, but he ultimately accepted sitting on Santa’s lap. His mouth hung open. The photos were taken. It was almost over.
I reached my arms in towards Elliott, but Santa spoke.
“What do you want, little boy,” he said to Elliott.
Elliott softly mumbled.
Benjamin interjected. “He can’t talk. He’s got autism.”
Santa went on about his grandsons having autism, too. He was sweet, but I wanted out. I took Elliott and we escaped the hut. It was over. My husband paid the obligatory twenty-five and returned with the 3 photos. Elliott touched his face on the photo paper and quietly said, “Elliott.” He seemed pleased.

Cookies were made. Elliott is on a special diet, so I made gluten-free gingerbread from scratch and erected and decorated it with the kids and my husband. We watched Christmas movies and told Christmas stories. We bought a present for Benjamin’s first-grade teacher and 8 presents for Elliott’s preschool teachers, speech therapists, behavioral therapist, and occupational therapist. We bought a tree, we put up lights. We put on fires in the fireplace. We drove around to look at lights. We drank hot apple cider. We attended Christmas parties. We were happy.

Elliott never went back to sleep on Christmas morning. He woke Benjamin at 6am, and we all stumbled down the stairs. Benjamin chanted, “Santa, Santa, Santa” and rushed to look at his stocking first. He then raced to the tree.
“Look, Elliott! Presents!”
Elliott, purple half-moons below his eyes, screamed.

“Grab the video camera,” I told my husband. “Put the battery in the camera.”
Ben’s straw-like hair was matted in places, protruding in others. Elliott looked unsteady, his eyes clouded over, his mouth working his thumb.

As Ben ripped through the candy-cane printed paper, I sat with Elliott and attempted to interest him in a gift. He let me help him open one. It was a figurine of a character from his favorite show, Super Why!.
“Super Why,” he said, quietly.
I repeated his words enthusiastically. Opening presents is fun, see?
I reached for another present and Elliott screamed, “No, no, no, no. My Super Why, my Super Why. No!”
Meanwhile, Benjamin picked up another book-shaped present and said, “I hope it’s not another book.”
“What did you say?” my husband and I both countered, Elliott still screaming in misery.
“Nothing,” Ben said.
We gave Ben the lecture about being grateful and other kids not having anything and he said he was sorry, but we could tell he was disappointed by his gifts. Elliott continued to scream and nothing would make him stop. I handed him to Ryan and opened up his presents for him. Ryan prepared the kids breakfast and I walked upstairs, laid down, and cried. Eventually, Ben expressed further displeasure with his gifts. Ryan scolded him, and he ran up to his room and cried as well. Elliott continued to eat his gluten-free waffle and screamed intermittently.

I needed to get out of the house. I changed my clothes and went out into the cold air for a 3-mile run. It had rained for the past week, and the streets were heavy with plant debris and mud. I ran past houses and imagined their mornings, the warmth inside. I felt guilty for not being home, for running away even momentarily.

Parents should not weigh their expectations too heavily on their children. I know that. I suffered too many miserable childhood holidays not to know that. It’s almost impossible for me to not be disappointed, though. I don’t want Elliott to scream through all the things that are supposed to bring him joy, to never quite understand what is going on around him. I just want to get closer to the inside of his mind and to be in there with him and to understand, to not always have to wonder why he is yelling at me or what he is saying. I want Benjamin to appreciate what he has, so much more than what I had when was a child, even though I realize there isn’t any real way for him to know that, to force context.

Still, my boys amaze me. Benjamin cares deeply about every one in his family, about animals, about his friends at school. He is funny and handsome and charming and interesting and smart. He says “frightening” and “nocturnal” and “deciduous” and “caribou.” He hugs me and brings me candy when I cry.

Elliott is beautiful and funny and delicate and strong and intelligent. I read him one of his Christmas books tonight, one about tucking in various baby animals before they go to sleep. He laughed his deep, throaty laugh as he folded the pages over to tuck each animal in. He did the sign language symbol for “more” so he could do it all over again. He laughed with me and kissed me good night and touched my hair with love and said “good night” and “I love you” in his way that only very few of us understand.

I know I am lucky in so many ways. But sometimes it wears on me. The screaming. And the special diets and therapy and token boards and data collection and ceaseless anxiety about how much or how little I am doing right. I want to be able to make plans with people and not worry about all of the routines and school and therapy sessions and appointments.

I know I’m whining. I guess I’m just having a hard time right now.

break time

After a very long semester, our grades are submitted and we are chilling at home with the kids. Ben's playing his DS, Elliott is playing his mini basketball game in the kitchen, and Ryan is watching the Lakers suck it up on television.

Ben won three awards at school on Thursday and they gave him certificates to two places where we don't want to take him. Arcades and bad pizza are involved--he wins, we lose. We are very proud of him for his progress this semester and he's so much happier and settled in to school.

Elliott, too, has made huge strides this month. He is more social and copies everything Ben says and does. He is also an avid teller of knock knock jokes.

The boys are so funny and kind and I'm looking forward to spending the next few weeks off together. We're going to create some kind of schedule for them (and us) so we don't lose our minds and they don't get too bored.

My Christmas shopping is also finished, yo. Because I'm fucking awesome.

empathy

This morning, the kids were running around playing before school when Elliott threw a hard little rubber ball right at Ben's nose. He wasn't being malicious; in fact, that would have been more reassuring. His look was decidedly...blank. And when Ben clutched his nose in pain (it was quite dramatic), Elliott only screamed, "My ball" because "his" ball had rolled away. It used to be that Elliott never asked us if we were okay when we hurt ourselves. In recent months, he will occasionally say, "Are you okay?" though the sentiment isn't quite fully there. I imagine that typical 3-year-olds aren't the most compassionate people in the world, but I have no reference point. My kids have never been typical.

So while Elliott screamed for his ball, I gently held his hand and said, "Look, Elliott. Ben is hurt." I touched his hand to Ben's nose and said, "Look at Ben's nose." Elliott would only look at his ball and I had to ask him several times to look at Ben's face. Finally, he did. Ben returned his gaze in melodramatic fashion. Nothing seemed to register for Elliott. "Tell Ben you're sorry," I prodded. "I'm sorry, Ken-Ken," Elliott said, but it was clear he only cared for his ball. Ben wanted a profuse apology along with a hug and a promise of no future violence against him. He also required a hug. He lectured Elliott on the dangers of small rubber balls and Elliott stared blankly past him.

I wonder if Elliott truly has empathy or if he is just imitating. He laughs at the parts in movies that aren't supposed to be funny, when the cartoon character is in anguish. It's interesting to have to teach him to 1) notice when someone is hurt and 2) react to it appropriately. I worry about the problems this will cause in the future. I wonder if empathy is something that can even truly be taught.

this is a long one.

The past couple of weeks have been huge for Elliott. About two weeks ago, we were sitting in a frozen yogurt shop having dessert together. Since Elliott can't have dairy, he was eating a little cup of jelly beans. When he got to his last one, he held it out to Ben and said, "Here, Ken-Ken." Ben took it and ate it and said thank you, and Elliott looked please. Ryan and I tried to contain our excitement. This was the first time he had ever shared like this. Ever. A huge step for him. Since then, he's been sharing a lot. He brought a bunch of toys to his cousin Stella and he regularly shows Ben items of interest. Again, something clicked in his brain and he changed slightly.

Last night, something else clicked, and he and Ben pretended to be cats. Elliott followed Ben around, meowing and pretending to drink milk. He will pretend play like this if we prompt him, but we didn't have to this time. Ben is so good to Elliott and teaches him things that no one else can teach him. Elliott feels safer with Ben than with anyone else, including Ryan and me.

This past weekend, Elliott and I ventured alone to Sacramento to be a part of the MIND Institute's Autism Phenome Project. It's the largest autism study ever done, and the first to look for types of autism rather than lumping all autistic people together. Elliott had his first airplane trip and for the most part it went well. I thought he would be more excited about the rise into the air, but he just stared, a little blankly, which I hate to see him do. Ben used to be the same way though. Things I thought would excite him, didn't. Things that seemed to excite no one else, did. And now that's all changed for Ben, for the most part. And hopefully it will for Elliott one day.

The first day, Elliott and I checked into our hotel room, ate together and found a playground to play on. There were some very annoying, mean little girls, one of whom stepped on his head, but he had a great time. The next day was a different story.

First, he had to get blood drawn. Then a lengthy medical exam during which they examined his skin with a UV light. He did not appreciate that. Next, an ERP. I forget what it stands for, but they put a cap on his head attached to a thick coil of wires. The cap has about 50 holes in it and they prod at the holes, swabbing each one while pulling Elliott's hair. The people who ran this activity--and this was a first--were insensitive to his autism, and kept touching him and shoving toys in his face. For the first time, I second-guessed my desire for him to be a part of the study. Why was I subjecting him to this? Would I make him feel weird or different? Then, for an hour, Elliott and I had to sit in a lightless, soundless room staring at a screen while they measured his brain waves. I had to sit in there with the girl assistant while she told me to make him more relaxed or make him more excited or stop moving or get him to stare more intently at the screen. She kept touching his body and I kept suppressing the urge to yell at her or punch her in the face. She was so young and didn't understand what it is to be a parent, what it is to have a child with autism. She just needed to do her job and collect her brain waves.

Elliott was not pleased when we left and his hair was encrusted with the brain wave gel they had squirted into the cap. He looked like a miniature homeless man, his clothes soiled, his hair disheveled, a world-weary look upon his face.

We had a few hours off, so we went back to the hotel and I gave him a bath and I let him play with my ipod.

Next, at 8pm, the MRI, the thing I had been dreading. He had to be asleep for 30 minutes before the appointment started, so we ate, and I got on the freeway around 6:30pm. I put white noise on in the car and started driving. I made it almost all the way to San Francisco and then drove back. It was raining and I was tired so I stopped for a coffee and kept driving. Eventually, Elliott fell asleep, so I continued driving for another 30 minutes and arrived just on time to the MRI location.

As soon as I pulled in, as predicted, Elliott awoke. A light rain continued to fall and woke him up further. But when we got inside, he immediately fell asleep again. Over the next 45 minutes, the neurologist, the technician and I gently placed ear plugs, then headphones, then a weighted blanket on him. He continued to sleep, to my surprise. We then carefully slid him into place on the MRI platform. They put a laser on his head and adjusted the settings. They slid him into and out of the machine. He slept on.

For the next 30 minutes, they conducted the set of 5 scans. I was told that often they only are successful at obtaining the first scan and that this would be good enough. The sound was shocking. Like a jackhammer or helicopter or artillery fire one foot from his head. But Elliott didn't even twitch.

Despite the noise, I almost nodded off myself. It was nearly 10 when we were finished, and as the neurologist walked me through the compelling images of my son's brain, I struggled to keep my eyes open. Elliott continued to sleep while the technician watched him.

I was profusely thanked for being a part of the study and encouraged to stay with it for the next two years of our commitment.

I watched Elliott during the ERP and I watched him in blue light of the MRI machine, and I felt like a terrible person for putting him through all of this. At the same time, I feel it is important to research autism and it is important to gain access to all of the information I can about him. I still feel conflicted about it.

When we got home, both of us were exhausted and cranky. I slept and Elliott watched his favorite television show. We don't have to return until next summer, so we have plenty of time to recover. In the meantime, things will click in Elliott's brain and he will change and grow and continue to surprise us all. And a neurologist will measure the new connections made, the blood flow, and hopefully it will all make sense one day.

a very tall 6-year-old

I know it has been some time since I have posted. I have had a particularly busy semester so far--I'm teaching 5 classes instead of 4, all with lots of papers to grade.

But this is important. Benjamin is 6 today!!! Much like his father does, he has been counting down the days to his birthday for the past 6 months. Last night, he could barely fall asleep. This morning, he woke extra early, bouncing through the house in his Super Mario pajamas, proclaiming his age. I asked him what he would do now that he was 6, and he just shook his head and said, "Mo-om." Like, you are ridiculous. He hugged me for a good long time this morning before school and he felt so large and gangly in my arms. It's unbelievable to me that he was an infant at one point. When we are in public, people think he is 7--even 8. When he was a baby, he was angry and quiet. Now he is sweet and loud. He cracks jokes and gets 100% on his spelling and math tests. He helps his little brother learns the letters and puts up with Elliott's constant imitation of him. He gets stressed out at even the smallest things, even when I ask him how his day was. I am sad that 6 years will pass seemingly in an instant once again and this day will seem so far away again.

At this moment, he is leaning his blond little head against my shoulder, watching a Robin (of Batman fame) cartoon, his chin resting thoughtfully against his fist. Seconds ago, there was a scene that scared him and so he curled up against me. I love that. I will miss that.

For now though, I am so proud of this little boy. He is helpful and kind and thoughtful and smart and handsome and I feel privileged to be his mom.

sweet sweet boys

Right now, Elliott is gently petting Mona while Benjamin draws pictures of cats and dogs and eggs and other farm things. Even though Ben can be intense and Elliott can become instantly angry for the most minor thing, I have sweet and gentle boys and I am grateful for that. Last night Benjamin named the top five things he wanted to dream about:
1. Sheep
2. Ladybugs
3. Balloons
4. Caterpillars
5. Bunny rabbits
He closed his eyes and smiled. Of course, we heard him talking to himself later, probably about stressful things, while we heard Elliott kicking the plastic sides of his firetruck bed but eventually they both fell asleep. I love these boys so much.

looking up

Both of the kids had good days at school today. I no longer have strep throat. Let's see how many days we can go without a crisis! Here's to boring! Elliott is becoming more social and speaking in full sentences. Ben had less anxiety about school and is very excited for his first rootbeer float tomorrow. Apparently the floats are free but the PTA recruits you all night long. It's like a time share model. There's this one woman who constantly harasses us to join their cult of bitter mothers but I 1) refuse to be a part of their crazy and 2) don't have the ability to assemble fliers and run carnival booths. Homegirl needs to settle down.

elliott before summer

making it work

Sometimes it's tempting to just stay home on the weekends. I might get to read part of a book. Or I can leisurely drink a cup of coffee (well, as leisurely as that can be with a kid screaming Mommy Mommy at me). However, we are making an attempt to do new things with the kids, more than we usually do. So today we took a 1-hour drive up to Idyllwild (sp?) for the Butterfly Festival. It isn't Ben we worry about (it used to be). It's Elliott. He can't handle new events very well. He doesn't like the driving, the new people, the noise, the sensations, etc. But we can't just keep him at home. That wouldn't be good for him. So we load up his favorite snacks and his favorite movies. We take deep breaths, and we try to be as optimistic as Ryan and I can be.

Yes, Elliott screamed. He also threw-up because of the winding roads. He didn't appreciate his ears popping after we passed 3000 feet. By the time we got there, he was a smelly, unhappy mess. He was mostly cranky the whole time, punctuated by moments of happiness--climbing a rock, noticing a small waterfall and ravine, coloring a butterfly mask.

Ben had a fantastic time. He got to hold a butterfly and made a really intricate mask and necklace in the shape of--you guessed it--a butterfly.

The screaming began to disrupt the 3-piece-Jerry-Garcia-covering band and its listeners, so we had to take off before the release of the butterflies, but, hey, we did something new, and that was the only goal.

So I guess the message here is, we can stay home and feel sorry for ourselves that it takes too much effort and stress to get an autistic kid out of the house. Or we can just forge ahead and do it and have the best time our family can have. Because screw those other families, with their non-screaming, non-throwing-up kids. They aren't nearly as interesting as mine is.