Thursday, December 30, 2010

Sunday, December 26, 2010

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.

Sunday, December 19, 2010

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.

Tuesday, November 09, 2010

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.

Tuesday, November 02, 2010

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.

Tuesday, October 05, 2010

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.

Friday, September 17, 2010

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.

Monday, August 23, 2010

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.

Thursday, August 19, 2010

Saturday, August 14, 2010

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.

Sunday, July 11, 2010

unresolved

We've been to urgent care nearly every day this last week because Elliott won't pee. If he doesn't pee often enough, his bladder will stretch and there will be permanent damage. We don't know if the problem is a behavioral one or a physical one or a medical one. We've had some good doctors and some bad ones, but we have to go and see a urologist in Los Angeles this week to see what's going on.

Because Elliott won't pee, they have to catheterize him, which means we wrap him up in a sheet or a blanket and pin him down while the nurses do the procedure. It is traumatizing. But nothing else has worked. We had him drink cranberry juice while we massaged his stomach and watched potty videos this morning and he still won't pee. We've tried warm baths, running water, playing with water, etc. We've tried bribes. Nothing works.

Elliott's respiratory infections have cleared up since we've gotten Mookie a home and added air purifiers to our house, so that's the good news.

We can't really do anything until we get this figured out and it's so frustrating and exhausting.

Wednesday, July 07, 2010

my poor little one

Elliott has been to the doctor 5 of the past 7 days. He had an earache, was vomiting, had diarrhea, wouldn't pee, was grabbing his crotch, screaming, a fever, chest congestion, nasal congestion, a cough, etc. Pretty much everything you can think of, he's had it this week. Except a rash. I probably shouldn't jinx it. Last night we were at urgent care where they had to catheterize him. TWICE. Because they fucked up the first time. Good news is his kidneys are working. Bad news is that no one knows why he won't pee for 24 hours and doesn't want to drink anything. So he's getting an ultrasound today and bloodwork as well. And then we'll talk to a urologist. Shitty for any kid? Yes. Worse for Elliott? You got it. He doesn't understand why we are inserting a tube into his penis or letting strangers put their hands all over him or sticking needles into his veins. He screams and screams our names as though we are betraying him. He wants to leave and he keeps saying "outside, outside, outside" until he gives up and just sobs. And this child has been through it, man. First off, he's got autism. Then he's constantly got a respiratory problem--he is coughing most of the year, a hacking smoker's cough. (Maybe he sneaks cigarettes after we go to bed?) He's very underweight and lost a pound within this past bout of illness, though we managed to help him gain it back. It's just so unfair, and we can't live normal lives because we are at the doctor's all of the time or he is feeling so poorly he just screams and screams. Here's hoping it all gets better soon.

Saturday, June 05, 2010

two steps forward, one step back

Oh Elliott. How you toy with us. So Elliott was having an amazing week. And then we tried to go to a party yesterday. And then basketball class today. And all hell broke loose. At the party, he didn't like everyone looking at him and talking to him and he began to scream and kick and freak out. I had to take him home, screaming and snot-covered the entire way. Then we tried basketball class with Ben today. It began with promise, but then when he realized he couldn't simply shoot the ball in the hoop over and over and over again, that he would have to also listen to the teacher (who was very kind) and learn other skills, he again flipped out. Other parents stared and rolled their eyes. We persisted, and we will continue to persist and those other parents can lick my balls, as I told Ryan. (I'm a classy lady.) A colleague of Ryan's passed by while we were in class. She didn't know that Elliott had autism, and when she found out, she acted as though I told her that he had died. She got quiet and uncomfortable and dismissed herself awkwardly away from me. What is wrong with people? I'm sorry my kids don't fit into your idea of what kids should be. My kids are awesome--funny and sweet and kind and smart and beautiful. And if you can't see that, then you have the problem.

Thursday, June 03, 2010

How effed up is this? You should be angry.

Photobucket

breakthrough week

The past month for Elliott has been hard because he broke his arm and his schedule was disrupted and he was generally screamy and miserable. However, it has all paid off. This past week, he has made so many accomplishments. He's begun to speak in two-three-to even four word sentences ("Where did Daddy go?" and "I love you, too" "Put it in" etc.) and his eye contact is insane. Like he will look at me and hold my gaze and talk and laugh with me appropriately. He used to catch my eyes for a second or two, but now it's sometimes a minute or two when we are talking or playing around, which is amazing!!! He's singing full songs, laughing at jokes, tapping on our shoulders and asking for attention with words instead of screams. He seems so happy and pleased to be a part of the activities he used to stay away from. When we went to a baby shower a week ago, he even asked a few kids to play with him. He didn't know how to follow through with that, and for the most part he stayed a safe distance away from all of them, but he was watching and imitating. He is getting there. I want to leap through this computer and shake your shoulders in excitement, that's how excited I am. Typing does not do justice to the elation that I feel right now. We are going to work hard with him all summer, and this boy is going to do great things. I just know it.

Tuesday, May 04, 2010

like a dagger through my heart

Ben and I have been having our issues lately. When I asked him to listen, he tells me his ears don't work. When his Zhu Zhu pet (a hamster toy for those of you out of the loop on children's toys) was taken away because he wouldn't stop annoying Elliott, he screamed about it for almost an hour. He whines and yells and says he doesn't like me or his toys or his house. I remind him that other people don't have toys or houses or food even and he just cries even more. In general, he is a very sweet and loving and smart and helpful boy but sometimes he is SO SENSITIVE.

In any case, during Elliott's therapy, Ben was having a hard time again (probably because Elliott gets so much attention), and he retreated to his room. I went up to check on him about 10 minutes later, and he was packing his backpack full of stuffed animals. "Where are you going?" I asked him. "To see your mommy," he replied. This took me off guard. I didn't know which mom (stepmom or biological) he was referring to. He barely sees my stepmom and I don't think he thinks of her as my mom. And my biological mom is dead. Ben knows that she is dead because he's asked me about it before, but we haven't talked about it in months. As he stuffed Pluto into a Thomas the Train backpack he continued, "I want to see where your mommy lives, but she's dead. So I can't see her. That's sad, Mom." This whole interaction was so earnest and surreal that tears immediately came to my eyes. I didn't let on, though. "Was she nice?" Ben asked. How would I put this? My biological mother was not nice. She was very mean to a lot of people and she was a drug addict. She wasn't pure evil; I believe that she loved me to whatever extent she was capable of love...but "nice" is not the word I would use. I try to be honest with Ben, though. I told him, "No, she wasn't very nice, but I'm okay...and I'm nice to you and Elliott, and that's all that matters." Giving your kids everything you never had also means coming to terms with the fact that none of that will change and you can only go forward. It is wonderful to be able to give my kids all of that love and support but it can be painful to see the contrast between what they have and what I had. I did not have a mother who loved me. I'm okay with that most of the time; lots of people have worse things to deal with. But sometimes it sneaks up on me. I

I have a twelve year old niece who just found out her dad (my brother) is a drug addict and has been since well before she was born. And god it hurts to see her struggle with this. And to hear her reassure herself that it will be okay, that she will make it, that she will give her kids what she never had. To see her smile break up into tears because she's under so much pressure. I see the struggle ahead of her, but I tell her, it's okay. You can make it. You can make your life different, for yourselves and for your children. I am proof of that.

It is strange to me that I do feel a little sad that Ben will never meet my mom, but I know that this is probably for the best. Ben forgot about his backpack full of animals and his desire to meet my mother almost instantaneously. The moment passed for him quickly, skimmed off the surface of his beautiful, stable life. I am grateful for that.

Wednesday, April 28, 2010

1st broken bone

Elliott broke his elbow yesterday. He fell off of the bench he was standing on at the breakfast nook. He tries to stand on this bench all of the time, and we tell him to sit down all of the time, but this time he fell down right on top of his elbow. At the time, I was at the Regional Center fighting with a duty officer who was a horrible person. No one went to this really important meeting on Elliott's behalf because his coordinator went on maternity leave. I've been asking about what would happen if she missed the meeting for the past month, and the RC wouldn't give me any info on her replacement. It's not like it was a surprise that she went on leave. SHE WAS PREGNANT. In any case, not only did they miss this important meeting, but they neglected to contact me about it. And when I tried to call, the phone just kept ringing and ringing. So, in a rage, I drove down there. As soon as I had resolved the issue (whatever that means with the RC), I got a call from Ryan saying he was rushing Elliott to the emergency room because he had fallen, he was screaming, and his arm was swollen. Elliott continued to scream for 3 hours as they took x-rays, examined him, and finally put a cast on him. Some lady in the waiting room asked Ryan why he was screaming so much. Good think we don't carry guns on us. We'd be in hiding by now.

In any case, his cast and his sling are very sad, and he keeps tugging at them to get them off. He doesn't understand, and I think that's the worst part. I also feel really guilty for some reason. I guess that's just being a parent.

Monday, April 12, 2010

things are crazy right now...

So instead of tell you about all of that, here's a healthy and GFCF loaded baked potato recipe for y'all. I came up with it!

Simple and good:

3 large Yukon gold potatoes, unpeeled cut up into fourths
5 strips of nitrate-free turkey bacon, cooked and crumbled
2 1/2 c. chicken stock and 1 c. unsweetened regular almond milk (not vanilla)
1 c. of spinach
1 tbsp. arrowroot powder
2 cloves garlic
1 tbsp. of oil (I use grapeseed)
onion powder (or real onion if your husband will eat onions), to taste
salt, to taste
pepper, to taste

Garnish with:
green onions or chives (optional)
light cheese (vegan or regular if not on a special diet)

Lightly saute the garlic in the grapeseed oil. Add onion powder, potatoes, bacon, and chicken stock and bring to a boil over med. high heat. Dissolve 1 tbsp. of arrowroot in water and add to the pan with the almond milk. Bring the soup to med. low and then cook until potatoes are tender. Add salt, pepper, and spinach. After the spinach wilts, serve with green onions and/or shredded cheese.

Tuesday, March 02, 2010

ok go video

This will cheer you right up:

frustration

Our school district has all of these resources that other districts do not have (namely taxpayer MONEY), and yet they have no program for mild to moderate autistic kids. Many lower income schools in the same region have excellent inclusion programs. I wish I were a lawyer so I could sue them so hard that they would have to fix their program. Because when you put mildly autistic kids in severe programs, I believe you negatively impact them for the rest of their lives. And that is just wrong. Of course I won't put Elliott in that program, but there are other parents who might not know that they have other options, or might not be able to pursue those options. Elliott has improved so greatly in just one year. He would have never been considered high functioning just 6 months ago, and now he is. And who knows where he'll be in another 6 months. It enrages me that this is going on and I don't know what to do about it.

Friday, February 26, 2010

moving on

So...my stalker friend was expelled from the college. I was worried about it last week, but now I just feel too busy to deal with a stalker. Couldn't he stalk me over the summer, when I'll have more time to deal with it? God, stalkers are so inconsiderate.

We are in the midst of Elliott's IEP process. And if you don't have a kid with special needs, then you may not know how arduous and emotionally exhausting this is. Basically, they are determining where Elliott should be placed educationally. He gets assessed by a psychologist, a nurse, and a speech pathologist and then 10 people meet in a room and tell me where they think he should go. So they wanted to put him in this autism classroom. Since he's doing so well in regular preschool, I was worried that this wouldn't be the right place for him, especially since they have no integration with typical kids. But I wanted to keep an open mind so I went and visited the class today.

And within about 10 minutes of sitting in that classroom, my eyes were welling up with tears. These kids were severe. Half of them were completely non-verbal. They were rocking and throwing their bodies around. The six year olds were learning skills Elliott mastered months ago. Most of the kids stared into the distance, past the teachers, past me. THIS was where they wanted to place my Elliott? After kindergarten, these kids went to a 1st-5th grade program at another school. In other words, no exit strategy. No integration. No hope that these kids would be mainstreamed, ever. I know that these women are well-intentioned and hardworking and using all of the resources they have, but, their expectations were so low for the kids. They were rewarding them with Doritos for clapping their hands. I mean, it was that bad.

So I guess the coordinator I got through the school district is supposed to be the bitchiest one around. I'm guessing my request for another IEP was not well-received. But there is no way in hell Elliott is going into that classroom. I refuse to have low expectations for my son.

Tuesday, February 16, 2010

guess who's back...

So I had this kid stalking me last semester. I used to be his mentor through a program at my work. He began to demand more and more from me and when I didn't live up to his extremely high expectations, he just sort of lost it on me. The breaking point for him was when I deleted him from my Facebook account. He then began relentlessly emailing me with vague threats and twisted religious references. He was removed from campus for a couple of weeks and told not to contact me again. And aside from one incident during finals week last semester, I hadn't heard from him. Until yesteray.

He sent me this long, bizarre message saying he was sent by Jesus to punish me but that he would have mercy on me if I did what he asked, etc., etc. Effing insane. So now I'm at work, flinching every time someone walks past my office. He is the kind of a kid who ends up shooting up a school. And that's what I'm afraid of. He know when and where I teach and what my office hours are. I hate that there is not much I can do about it at the moment.

I know that everything will be okay; the odds are on that side of things. But I have a mother who died at the age of 36. And as irrational as it may be, I've always feared that I would die before my kids were adults, leaving them motherless like I was. I'm the only 30 year old I know looking forward to her 37th birthday. I just want to get past that hump. So I am disturbed that this mentally unstable person could very well harm me if he wants to, seeing as Jesus told him to and all, and, for right now, I can't do anything besides wait.

Wednesday, February 03, 2010

ben's moves

Benjamin's second week at karate. Watch out, criminals!
video

Tuesday, February 02, 2010

current obsessions

I'm on a real cooking kick right now, and I've been experimenting with lots of gluten-free, dairy free stuff for Elliott (and the rest of us!). I highly recommend these two ladies' websites and I just bought their cookbooks yesterday. I've tried several of their recipes, and they are so good. Enjoy!

Elana's Pantry

The Spunky Coconut

Last night I made the chocolate cake from the first website using and the chocolate frosting from the 2nd one. It was amazing, Elliott can eat it, and it was lower in sugar and higher in fiber and protein. Benjamin loved it too!

Monday, January 25, 2010

conan o'brien's farewell speech


Conan is one hell of a person. Here's hoping he comes back (on Fox?)!

“There’s been a lot of speculation in the press about what I legally can and can’t say about NBC. And– this isn’t a joke– to set the record straight–and this is true– tonight, I’m allowed to say anything I want…

And what I want to say is this: between my time at Saturday Night Live, the Late Night show, and my brief run here on The Tonight Show, I’ve worked with NBC for over 20 years.
Yes, we have our differences right now. Yes, we’re going our separate ways. But this company has been my home for most of my adult life. I am enourmously proud of the work we’ve done together and I want to thank NBC for making it all possible. I really do.

A lot of people have been asking me about my state of mind, and to be honest with you, walking away from The Tonight Show is the hardest thing I’ve ever had to do.

Making this choice has been enourmously difficult. This is the best job in the world. I absolutely love doing it. And I have the best staff and crew in the history of the medium. And I will fight anybody who says I don’t… but no one would.

But despite this sense of loss, I really feel this should be a happy moment. Every comedian dreams of hosting The Tonight Show. And for 7 months, I got to do it. And, I did it my way, with people I love; I do not regret one second of anything we’ve done.

I encounter people when I walk on the street now who just… give me sort of a sad look. I have had more good fortune than anybody I know. And if our next gig is doing a show in a 7-11 parking lot, we will find a way to make it fun. We really will.

Finally, I have something to say to our fans.

This massive outpouring of support and passion from so many people has been overwhelming for me. The rallies, the signs, all this goofy, outrageous creativity on the internet…The fact that people have travelled long distances and camped out all night in the pouring rain… to be in our audience…

Here’s what all of you have done: you’ve made a sad situation joyous and inspirational.

So to all the people watching, I can never, ever thank you enough for the kindness you’ve shown to me. I’ll think about it for the rest of my life.

All I ask is one thing– and I’m asking this particularly of the young people who watch: Please do not be cynical. For the record, I hate cynicism. It’s my least favorite quality. It doesn’t lead anywhere.

Nobody in life gets exactly what they thought they were going to get. But if you work really hard, and you’re kind, amazing things will happen.
I’m telling you… Amazing things will happen.”

Sunday, January 24, 2010

Thursday, January 21, 2010

wishing i had a time machine.

I'm working with an advocate now as we transition Elliott to special services through the school district when he turns 3 in March. If any of you have kids that need help, I highly suggest using an advocate. She knows what she's talking about, she's calm and objective, and she helps me navigate through all of the crap I'm trying to get through to get the best support for my son. Anyway, Elliott is up for evaluation through the school district in two weeks and I can't get the district to send me a consent form to let me know what tests they'll be using in the evaluation. It makes sense that I review this information BEFORE the assessment so that my consent is informed, no? But the district usually brings it with them when they perform the assessment, which doesn't make any sense at all. So anyway, I was talking to her about all of this, and she asked me if Elliott has ever received any speech therapy. One of Elliott's most significant problems is language. I've fought very hard to get him a form of therapy called ABA which addresses language but isn't speech therapy per se. Elliott has not had speech therapy and suddenly I felt like a failure. My advocate was angry with the regional center for not providing this, but I am angry at myself. How could I have missed this? Now Elliott is turning 3 and we have missed a crucial window of time to intervene early with his language acquisition and I'm so frustrated with myself. Getting any type of service from our regional center has been difficult but I don't know why it didn't occur to me to fight for BOTH instead of just one. I guess there is no going back in time, but I really wish I could right now. Elliott, I am so sorry.

Tuesday, January 19, 2010

here we go again

So Elliott is getting close to three years old now. And I'm terrified. Benjamin turned into a maniac just before he was three, tearing posters from his wall, peeing on the floor, yelling in our faces, kicking his toys, etc. He wouldn't sleep. He wouldn't listen. He was in time out almost every hour. Ryan and I looked upon that time as a war of sorts, a war we were determined to win. And though homeboy has his moments, Benjamin is a sweet boy who generally listens to and respects people and is happy overall.

Now, Elliott is getting close to three. And he will not sleep. And he has hit us. He yells no in our faces and throws books at our heads. Last night, we got about 4 hours of sleep. We had to wake him up at 7 for his therapy and he was miserable for the entire first hour, tossing his body to the ground, banging his head up against chairs, etc. When I finally got him to calm down, I served him breakfast and he nearly choked on a bite of pancake. I had walked into the kitchen to get his juice, and suddenly he came around the corner, making a strange noise and looking terrified. I reached towards him and he started coughing (which is a great sign--air is getting through) and he choked the piece down and started crying, heaving into my chest. I was so grateful again that he allows me to comfort him now, and I just sat there with him until he was done crying that jagged, after-cry that kids get when they are very upset. He was completely fine, and he ate the rest of his pancakes withotu incident but it really scared me.

His therapy was interrupted for longer than it's supposed to be interrupted, and the therapist just sat there taking notes for a really long time. I'm grateful for the work she does with him, but it is very structured, and our lives our so unstructured and unpredictable and sometimes I struggle to reconcile my morning chaos and whatever chaos is going on in Elliott's head and Benjamin's demands with the three hours of therapy every morning, with the person sitting in my living room, telling me how to do everything, taking notes on what percentage of the time I provide Elliott with a prompt for a word. It gets intense.

And, still, I saw this couple taking their newborn on a walk in the stroller on my way to work and I felt so happy for them. I sit in the middle of the night with Elliott against my chest and I am exhausted, but the feeling of his body against mine, the complete trust he has in me, is incredible. It's difficult to describe all of this without being cliche, but what I will say is that I am grateful for this opportunity I have to be a parent. It pushes me to the brink sometimes, but it has also saved me so many others.

Sunday, January 17, 2010

video

i'm a terrible blogger I know I know

What an erratic mess this blog is these days. When I'm on vacation, I get a little out of hand and stop exercising and vacuuming and start eating cookies and watching reruns of The Soup. I stay in my sweatpants all day and don't leave the house. But I'm back to work and I'll get back to my normal routine of a frantic push towards a nervous breakdown. Even as I am typing, I am thinking of the ridiculous to do list I have at work right now. On the good news front, I got an appt. with a very mysterious Kaiser doctor who believes in the biomedical approach. It took me 3 months to get through to her, but I've got an appt. for Elliott next month! This means most of the labs and supplements we pay for would be covered by our insurance. Hallelujah! It is late and I need a shower, so I will leave you with this video of Benjamin playing his Wii. I will also save this video, along with many other things, to show him when he thinks he is really cool in high school.

Friday, January 01, 2010

events of the decade

2000-Ryan graduated with his B.A. from CSUSB. I married Ryan and we moved to Oakland
2001-Ryan's grandma passed away. I graduated with a B.A. from SFSU
2002-Matt passed away. Ryan graduated with his M.F.A. from Mills College and we moved to New York so I could attend Columbia.
2003-We lived in New York, which is a crazy event in itself.
2004-I got pregnant. Ian passed away. I gave birth to Benjamin and finished my thesis and graduated from Columbia with my M.F.A. We moved back to Redlands.
2005-We moved to a bigger place in Redlands and got sued by a credit card company. We settled the suit out of court. I got a temporary full-time position teaching. Benjamin had a severe speech delay and we pursued treatment for him.
2006-We moved again, and we both got hired full-time at different colleges. I got pregnant with Elliott. Benjamin improved with speech therapy.
2007-I gave birth to Elliott. Then we bought a house. Which was a bad idea in retrospect. So we moved again.
2008-We realized Elliott had a problem, and we suspected autism.
2009-Benjamin started kindergarten and exceeded our highest hopes for him. He is happy, healthy, smart, well-adjusted, and social. We lost our house, and Elliott was diagnosed with autism. We fought all year to get him the treatments he needed. And he has improved tremendously. He is happier and healthier than ever. Oh yeah, and we moved.

Ryan and my last ten years have been spent together, and I'm so grateful to have such an amazing man to share the chaos (and the few quiet moments) with. I'm not complaining, but here's hoping the next 10 years bring us more stability and comfort. We are so grateful for everyone who has helped us weather the good and the bad, and for all of the love we have in our lives. Happy 2010!!