Bicycle Irish: A Document of My Insanity

what it is like

2012-01-25T09:03:00.000-08:00

This post captures exactly what it is like to raise a child with special needs. Amazing.

my amazing boys

2012-01-24T17:12:00.000-08:00

Just a quick post.

Ben has read so many books that his teacher is tapped out and we need to start buying more books to supplement him for the rest of the year. Ben's becoming more and more of his own person. Gentle, occasionally sulky, bighearted, and eccentric. He impresses me with his intelligence every day.

Elliott can now cut with scissors and write with a dynamic grasp and trace his name. Six months ago, he could not hold a pencil properly and could not even draw a circle. He could make more than one snip independently with a pair of scissors.

His teacher at "new school" as he calls it, the one I moved him to after fighting with our own school district for years, told me she sees no reason he won't be in a regular kindergarten classroom in the fall. Two years ago, this boy could not look me in the eyes. He said no words. Now he's going to regular motherfucking kindergarten. Incredible.

Before class today, he started a game with another little boy. He was having so much fun, that he started hugging the other boy, over and over again. The boy politely asked Elliott to stop, but Elliott only laid his head on the other boy's shoulder. I had to tell Elliott to stop, but it was really sweet the way he was connecting with this other kid and wanted to express it.

Ben's got braces now, and Elliott is going to be 5. It's happening so quickly.

how awful.

2012-01-10T23:31:00.000-08:00

I have not written anything on here or anywhere else for a very long time. I have been preoccupied with other things, namely keeping up at work and Occupying Redlands, and now (possibly) grant writing for an autism summer camp. I have projects, real creative projects I need to return to. I wish there were more of me. Maybe I should eat more frosting and then I could employ my fat rolls to research distance education best practices while I revise the screenplay I need to revise.

In any case, I am back here because I would like to say that I am very sad for my father-in-law Jim right now whose mother is very sick. Our parents are always our parents no matter what and no matter the circumstances, something shakes you to your foundation when confronted with losing them. I barely knew my mother and, as much as I tried to deny it when I was younger, losing her has shaped who I am. It is always there. I wish I could do something to make everything better, to make it all go away, for Jim, who is one of the kindest people I know, and for Wanda, his mother, who is scared.

In the meantime, Jim, I will make you all of the cake that you want and bring Ben and Elliott to your house to put on Muppet shows.

Love you.

weight loss is boring

2011-10-21T21:44:00.000-07:00

I lost 7 pounds in a month and have flatlined because I don't care anymore. And I like beer. But I'm still not eating grains or sugar (except for maybe once or twice a week), and I'm keeping my weight off. So, no dramatic before and after photos. Not for a while anyhow.

What this post is about is not weight loss, but about Elliott. Today, I watched some video of him from exactly a year ago. I could not understand anything he was saying. Everything began with a "k" sound and ended with a "k" sound. It was like he could not get his muscles in his mouth to work. He was trying to talk, you could tell he knew what he was saying, but I just couldn't understand it. And I'm his mom. Imagine what other people heard.

Yesterday, we went to a coffee shop, and Elliott told the cashier, "I have a backpack." She said, "You do? What kind?" He said, "Scooby Dooby Doo." She said, "Cool."

This may not sound like an amazing exchange, but my heart nearly exploded. He had a conversation, with a stranger and SHE UNDERSTOOD HIM. On top of that, he looked into her eyes when he talked to her. Holy shit. This was HUGE.

Not only that, but before we left school, he asked a boy what his name was and then he and the boy went off to play for a few minutes. Another mundane (HUGE for him) event!

On the way home, he told me what he had for lunch and a song they sang at school, another big deal.

It was just one thing after another, back to back, and I realize it sounds so small when I describe it, but it was amazing for us. I turned to Elliott in the back seat on the way home from the coffee shop and said, "I'm so proud of you." He just looked at me and asked me to play his Sesame Street CD again. I know he doesn't understand what I mean. But I also know that he will someday, soon.

week 2, a week that will live in infamy

2011-09-25T15:07:00.000-07:00

Confession: I had 3 beers and fish and chips and a whole wheat tortilla and cheese and rice noodles this week. The rest of the time, I ate Paleo. I just couldn't control myself.
So here are my new stats.

Beginning of last week: 178
Today: 177

I lost only 1 pound. I mostly blame the beer and the fish and chips, and the worst part about the fish and chips is that they weren't even very good. Since I hadn't had anything fried in a very long time, I think a deep fried sock would've tasted good to me.

On top of this, Ryan was sick this week and I had no time to exercise--I only did some strength training and yoga.

I have decided that I cannot eat the amount of meat required in Paleo, so I'll be doing a modified version that is actually not Paleo at all. I am going to allow myself minimal amounts of dairy, legumes, and soy but still no refined sugar or grains. I'm also going to make sure that I exercise at least 5 times this week (after all, my triathlon date is rapidly approaching). I'll report back next Sunday!

On a side note, Ben started the Cub Scouts last night. I invited a bunch of kids and their parents into our house. We had a pretty successful meeting, I thought, and Ben wore his uniform. I'm co-leading the pack and while I don't agree with some of the larger Boy Scouts policies on gay people and religion, etc., I'm making my own rules. Gay people? Totally welcome. Atheists? Your leader is one. Kids will not be pressured in this den. The cub scout motto, after all, is "Do Your Best," not "Be a Christian Republican."

school photos

2011-09-23T09:53:00.000-07:00

It's a bad year for school photos in this family. We got Elliott's school photos back from his current school. In the close-up of his face, he looks as though someone was pinching him in the back of the arm while he was simultaneously looking in the son. In the class photo, he is looking directly at the ground. We tried to return the proofs today, but the teachers said, "Go ahead and keep them." Lucky us.

We got the photos back from Ben's school as well. I didn't know it was photo day, so he was wearing an odd shirt that he had stained with his breakfast, and his straw-like hair was standing straight up in the back. I had tried to comb it down that morning, but it is resilient and stubborn. So, while his face looks okay, his hair and shirt are pretty shameful.

I guess there will be no framed hallway school photos this year. We'll just pretend like none of this ever happened.

week 1 results

2011-09-18T20:35:00.000-07:00

I have done 7 straight days of Paleo diet, as of this evening. Here are my results.

Starting weight: 183
Today's weight: 178
(5 pounds lost!)

I don't think you understand how difficult it is for me to lose weight, so this is a huge deal for me! I have tried to be very good, except today I accidentally ate beans because I forgot that you can't eat any legumes. I also had half and half twice this week in my coffee when I was away from home. Not too bad, I don't think. The best part about it is that I haven't been hungry at all, and I can eat as much as I want. I hate it when I count calories because I feel hungry all of the time. The hardest part is not drinking beer because I love me some beer. I'll admit to also having fleeting cravings for cheese. But I'm going to go the 30 days and try not to cheat, and then I'll work stuff back in in moderation. The main things I'll probably stick with are limited dairy, no grains, and no refined sugars because those are the worst things for you and I honestly haven't missed them. I use coconut sugar or stevia for a sweetener and I use almond flour for baked goods. I use coconut or almond milk for dairy.

It is very motivating to wake up and weight just a tiny bit less than the day before. I hope that continues. Wish me luck on week 2!

obsessions

2011-09-13T22:06:00.000-07:00

Ryan and I are both diagnosed with obsessive compulsive disorder. It manifests very differently for both of us. I'm more compulsive; he's more obsessive. I throw everything away; he keeps everything and packs it away. We both worry...a lot. We both have occasional panic attacks. We are both on medication.

Obsessive thoughts are a hallmark of autism as well, but Elliott is probably the least obsessive one in our family. Benjamin is a different story. All little boys get really, really into certain activities, but Ben takes it a step further. His first obsession was letters and that has dovetailed into other interests. Currently, it's Super Mario Bros. I love Super Mario Bros. as much as the next person and we play games together with the kids. We limit their video game time to 1 hour per day, but here's the thing. If Ben isn't playing a video game, he's made up a live action game with the figurines. He draws comic books featuring the Mario gang. He plays Mario at school during recess, at playground on the weekends. He talks about it nonstop, from the moment he wakes up in the morning until, literally, the moment he goes to bed. Tonight, I was scratching his back and he was falling asleep after storytime, and he suddenly opened his eyes and said, "Mom?" "Yes," I said. "I'm worried." He was worried that his video game hadn't saved properly. I assured him it was okay and he relaxed again, clutching the little Dalmation he sleeps with in the crook of his arm.

I am worried about how this translates on the playground at school. He found a friend who likes to play Mario with him. I'll call that friend Dean. Today Ben told me, "Sometimes I ask Dean to play with me, but he doesn't hear me." I can only imagine that Dean cannot keep up with the intensity of Ben's dedication to the Mario, that Dean, perhaps, wants to play handball or swing occasionally. I gently suggested to Ben that maybe he ask Dean if he wants to play something different some time, that maybe it would be a good idea if he tried something different. "I just like Mario," Ben said.

I feel badly that we have given this to Ben. I know that we could find ways to pull back on Mario, but I honestly feel helpless because if it's not Mario, it will be something else. It always has been, since before he was 2, when his intense interest in letters exhausted me. The good news is, he's doing well in school and he does have friends. So far, it hasn't interfered with his education. I just want him to be happy and balanced.

30 days

2011-09-13T10:50:00.000-07:00

So, I can't lose weight no matter what I do. I exercise a ton and I eat pretty healthy, and still...no weight loss. In fact, when I exercise more, I gain weight. Some of it might be muscle, but there's no way it's ALL muscle because, well, that would be a lot of muscle.

So, I need to get my metabolism in check. I decided I'm going to try this Paleo diet for 30 days and see how it goes. It makes sense to me and seems reasonable. Basically, no grains, no dairy, no beans, no refined sugar, no processed foods. Lots of vegetables, fruit, meat, eggs, nuts, etc. You can drink coconut or almond milk instead of regular milk. Today is Day 3. I don't really want to kill myself or anything; I just have a dull, slightly sad feeling towards food. Something like resignation. I've eaten more fruits and vegetables than I have in a long time, which is a good thing. The bad thing is that the Paleo diet requires eating meat. I do not like meat and, for me, I think it's unethical to eat meat (no judgment on anyone else). However, my vanity is more important than my morals at this point. I have a triathlon coming up on Oct. 15th and I want to feel good and I want to look good, too. Hopefully, after I get back to my fighting weight, I can adjust the diet and work the meat out of it.

I took some before photos in the hopes that there will be after photos. I will post them in 27 days (if the results are good). I'm posting this up here because if I make it public, it'll motivate me to stick with it. Wish me luck!!!

Also, here's an idea of what my diet looks like. I ate this yesterday:

Breakfast:
2 eggs with spinach
coffee with coconut milk and stevia

Snack:
Pear and 1 clementine

Lunch:
Salad with carrots, bell peppers, ham, and balsamic dressing

Snack:
Dried, unsweetened apples

Dinner:
Roasted chicken
Broccoli salad with bacon, pears, and carrots

insomnia, anxiety, hope

2011-09-08T16:50:00.000-07:00

I know it's been awhile. Stop looking at me like that. I already feel guilty. So I awoke at 3:17 a.m. this morning and my mind began assualting me with "what ifs" and "to dos" and I could not go back to sleep until I had created an Excel spreadsheet the possibilities. I am not exaggerating.

Here's what's going on. Elliott is in an okay preschool with pretty good teachers and curriculum. He is happy and learning. However, his program is called an inclusion program, which means he should be with typically developing kids. The reason Elliott would benefit from this is 1) it's the law and 2) he does very well with watching and adopting more typical social skills from neurotypical kids. He does it with Ben all of the time. He went to a regular preschool for two years and did it there as well. At the same time, he needs the supports in place to help facilitate his goals, and this is why he needs to be in a special education program. An inclusion program offers both the support and the learning from typical peers. Redlands said they were giving him that but they didn't--all of the kids in his class have some sort of deficit, and many have more serious conditions. This is not an inclusion program.

So a friend and advocate told me that I can possibly establish district residency where I work and after a lot of back and forth with that district, on Monday, I have an observation at one of the most cutting edge special education inclusion preschools in the state. If we decide to move Elliott there, my schedule and his schedule will go all to hell. I will have to find someone to help me transport him to and from a school 35 miles away from our home. I'll have little time to work around that schedule. I'll need to devise Excel spreadsheets and worry late into the night. He'll likely have to attend a few meetings with me at work. He'll have to adjust to a new school with new kids and a new teacher. But it will be worth it. That kid is on the cusp of getting to where he needs to go; he just needs a great program to get him there. I hope this one is it.

my school boys

2011-08-15T08:40:00.000-07:00

road trip 2011

2011-07-16T12:37:00.000-07:00

Last week, we took our first family road trip to the Bay Area and then Redwood Valley. We were gone for five days and saw many friends, some of whom we hadn't seen for 10 years (and who had never met the boys), and many family members. It was the farthest north Elliott, Ben, and I had ever been. I was an anxious mess at first, especially the first day. Elliott had never been on a real road trip and he was sleeping in a motel room and being hauled all over town, to meet new people in new places. We made a social story for him, but he didn't seem to get it. We bought these, the best purchase of our lives, and installed them in the car.

Ben had a blast and was polite and helpful and just his amazing, affectionate, fun self the whole trip. Elliott had a mixed reaction to the trip. When we went to the Exploratorium in San Francisco, he was totally enthralled for about two hours. But then he short circuited and started screaming and demanding fruit snacks. And then he pooped his pants and it was all over. Still, he recovered from each freak out and slept great most of the time. At Ryan's aunt's house in Redwood Valley, he did fairly well, but did have one night of sleeplessness (growing pains), and one day of screaming (going to the coast).

The thing is, when we got back, despite all of the screaming and stress, he had grown measurably. He has been talking more, more affectionate, more aware, and more social. Like his occupational therapist says, we can keep him in his bubble without any stress, or we can challenge those boundaries and force growth. The latter is more difficult, but it is so much more rewarding.

And now we know that there is one more thing our family can do.

breaking news

2011-07-16T12:24:00.000-07:00

Blue Cross is forced to pay for a tiny little bit (six months, when years are generally required) of ABA, the only proven effective treatment for autism. People on the latimes.com comments immediately get angry and defend the insurance companies and worry about their own pocket books. Disgusting. See my responses here:

feeling better

2011-06-14T13:08:00.000-07:00

Elliott peed normally all day today, so we are a little relieved. Yesterday was the first day of what was supposed to be his summer preschool program offered through the district. I intended to stay for about 20 minutes to observe and make sure the placement was appropriate. But when I got there and saw how severe the kids were, I decided to stay for a little longer. About an hour later, I was prepared to grab him and make a run for it. These kids were severe. They kept escaping from the teachers and one of them even ate crayons--twice. None of the kids said anything, and many of them were rocking or moaning or screaming. The teachers were doing their best, but this was not an appropriate placement for Elliott, as the law requires. After recess, (and after a girl with flailing limbs knocked Elliott flat on his back), I got him the hell out of there. It is for the best. I am looking forward to letting Elliott have a real summer with trips to the museum and the beach (in addition to his occupational, speech, and behavior therapies, which will continue). We may sign him up for a couple of classes here and there, but I'm taking the pressure off--all of us. Hopefully it will work out.

a dark mood

2011-06-09T17:40:00.000-07:00

So...Elliott's beginning to hold his urine in again. I had bought Ryan tickets to see the Beatles "Love" show in Las Vegas next week, and I just got off the phone canceling both our hotel and tickets. The people I spoke with were very sympathetic and gave me a full refund, luckily. Ryan and I were both very much looking forward to this little get away. Oh well.

Elliott starts a new summer program with the school district on Monday as well and I don't want to miss that. We were offered the class very last minute (as in yesterday), and so I want to make sure it will be an appropriate placement for him. Given that he is not peeing and starting a new preschool, we didn't feel right leaving.

I wish I could know that everything will be okay, and I wish Elliott didn't have such a limited vocabulary. He can say, "I want snacks." He can't say, "It hurts when I pee" or "I'm uncomfortable" or "I'm upset that I finished my last day at my old preschool today" or "I'm not ready for potty training" or whatever it is that is causing this problem.

There are only questions and no answers. I feel sorry for him and I feel sorry for Ryan and I feel sorry for Ben and I feel sorry for myself. I guess I should be more positive, but I'm not feeling it right now.

the lonely whale

2011-06-01T21:40:00.000-07:00

Ben wrote this book. Check it out. It's deep.
https://docs.google.com/leaf?id=0B7H9RGKeVcl3NzRmM2JlNzAtNTcyYS00ZWRiLTk3YjUtMWFhMTE2N2Y5YmRl&hl=en_US&authkey=CKKd17AJ

update

2011-05-21T08:26:00.000-07:00

I drafted a Mother's Day post that I never finished, but I just want to say that my husband and family made it a really wonderful, relaxing day. The kids' behavior started out a little rocky (it's a Mother's Day tradition!), but they were really sweet the rest of the day, and Elliott's social skills are just blossoming at a crazy rate. Thank you to Ryan for making it such a happy day.

It's almost the end of the school year for all of us. We have made the decision to take Elliott out of preschool until he starts up his new preschool program with the school district in August. We are going to put him in social skills classes and an autism speech and fun day camp and possibly music or tumbling classes. He'll also still have speech therapy, occupational therapy, and ABA. We are going to work hard to keep up a routine for him, but we also want time together as a family to do family crap like going to museums and the beach, etc. Elliott's social and speech skills have been on fast forward this week. He's asking kids to play with him at school, talking in crazy long sentences, articulating like a madman. It's amazing how quickly he develops skills once he gets the hang of them.

Speaking of family crap, etc., I have to volunteer at the PTA carnival at Ben's school tonight (at the exact time the Rapture is supposed to strike). I fully expect to be pressured to join the PTA for that hour when I am hosting a booth. When the PTA gets you in their clutches, they never let you go. Don't get me wrong; I'm happy to volunteer in Ben's class and contribute and all of that, and I do, but I simply do not have the time or inclination to join the PTA. Ben's also going to be in "Billy Goat's Gruff" the play at the end of the year. His teacher asked him to try out for the lead--the troll--but he would rather be one of the 12 rabbits. That's just how Ben rolls. He has no desire to be the center of attention. I can't wait to see this play.

I'm so grateful I have a job that is so flexible and has allowed us to keep up with Elliott's insane therapy/dr. appt. schedule while working full time. I'm so grateful that I get to be off for 8 weeks this summer to rest and enjoy my family. I'm also planning to write this summer--I have 3 feasible projects in mind, and I'm going to be making a schedule for myself so I can stay on track.

My plan is to wait until the Rapture doesn't strike, and then I'll grade those stacks and stacks of papers. And then...summer! Holla!

happiness

2011-05-17T10:35:00.000-07:00

I sat in the back seat of my car with Elliott this morning as he finished his waffle before school. Although he eats a lot, sometimes he gets silly and nibbles on his food like a tiny mouse, taking long stretches of time to eat a small amount of food. Since I consume entire meals in a matter of minutes, and generally do everything as quickly as I can, it kind of drives me crazy to watch someone eat so slowly. Plus, I didn't want him to miss circle time. So we sat together in the back and he smiled at me because he thought it was funny that I was sitting in the back seat rather than the front like usual. I rubbed his head and he asked me to see "wormy," his imaginary friend (basically, our index fingers). Yesterday and last Friday, he had to get a bunch of blood taken for routine medical exams related to his autism and his low weight. It seems like he is always obligated to do something: speech therapy (at two different locations), occupational therapy, behavioral therapy, assessments, doctor's appointments (psychological, medical, biomedical). He also has school and swim class. He's part of a research study up in Sacramento which requires even more testing. He has to get more blood, urine, and stool taken and examined than any other kid I know. I want him to get better, but I don't want him to feel like he can't simply enjoy his life. Sometimes, it's a tough thing to balance. When he was first diagnosed with autism, when things were really bad, when he was still just barely a toddler, I used to ask him, "Elliott, are you going to be okay?" before I put him down to bed. I never got an an answer of course. He's just begun to learn how to the names of emotions and how to recognize and imitate them. Sitting in the back seat with him, I asked, "Elliott, are you happy?" He said yes, and he smiled to demonstrate that he was happy. I asked, "Are you sad." "No," he replied, shoving a big bite of waffle (finally!) into his mouth. So, for now, I guess I'll do my best and take his word for it.

eloquence

2011-05-06T22:28:00.000-07:00

I go to this site called The Daily What, usually to distract myself and watch dumb videos about cats or Japanese inventions or whatever. Alongside these videos, there are interesting political stories and gossip about celebrities. It's a nice mix of inane and intriguing. In any case, I came across a link to this man Derek's final blog. He wrote it before he died after a long battle with cancer, to be posted upon his death. He left behind two daughters and a wife.

If you can, take a minute to read it. It is beautiful. Elliott walked in when I was reading this, and he looked at me and I was crying. He laughed because he has never seen me crying, and because he doesn't fully understand what sad means yet. I just hugged him and he squirmed away. A lot of the time, I am too closed off from people. I'm able to get a lot of stuff done, and I'm able to survive some of the crappy stuff I've been through, but it comes at a cost. I admire Derick's eloquence and openness. I will return to his blog and make my way through his posts because it affected me on such a deep level, especially his final lines to his wife:

"I don't know what we'd have been like without each other, but I think the world would be a poorer place. I loved you deeply, I loved you, I loved you, I loved you."

Here's the link to the full post: http://www.penmachine.com/

ben's assembly

2011-05-01T17:01:00.000-07:00

From 2011-04-29

short update post

2011-04-26T21:07:00.001-07:00

1. I'm fighting with my school district over Elliott's services, and it is ugly and it is exhausting. I know a lot about special education law now, enough to know that this school district is violating it.

2. Ben has started using "like" every third word or so and he thinks he is kind of cool all of a sudden.

3. Elliott is making huge progress pronouncing his words. His speech pathologists think he has apraxia, which is why it's so difficult for him.

4. Elliott got a "Moe Howard" hair cut today. Not by request.

5. I can't wait for summer break. I'm going to be swimming every day in the Bartletts' pool!

best big brother ever

2011-04-11T12:11:00.001-07:00

inland empire autism resources that i've found helpful

2011-04-07T12:38:00.001-07:00

Autism Resources That I've Found Helpful

IEPs:
http://educateadvocateca.com/default.aspx (run by a local woman with a child with autism—lots of local workshops and meetings)

http://www.wrightslaw.com/ (special education law, run by an attorney—he also does workshops nation-wide)

http://www.pacer.org/legislation/idea/ (an overview of the impact of IDEA 2004 on special education)

http://www.cde.ca.gov/sp/se/fp/documents/ectransitn.pdf#search=preschool%20disability&view=FitH&pagemode=none (handbook from the CA Dept. of Education on transitioning from IRC to preschool to kindergarten)

Book: Autism: Asserting Your Child's Right to a Special Education
http://www.amazon.com/Autism-Asserting-Childs-Special-Education/dp/0974445509

Email:
Here are the names of the two email listservs I'm on through yahoo groups. The parents on these are a full of amazingly helpful information. You just need a yahoo email account to sign up for them:

autism_inlandempire_socal
kaiserspectrumkids
ASDinsurancehelp

Local Resources:
Local autism meetings: http://www.tacanow.org/local-chapters/california/inland-empire/
Inland Empire Autism Society: http://www.ieautism.com/

Also, KVCR is hosting lots of television specials on autism this month. They are great. Here's the programming schedule: http://kvcr.org/~/media/Files/SBCCD/KVCR/PDF/KVCR%20Autism%20Programs%20April%202010.ashx

Finally, we put my son on a gluten-free, casein-free diet. It helped him but doesn't help every kids. Here's a link to a book on that: http://www.amazon.com/Kid-Friendly-ADHD-Autism-Cookbook-Gluten-Free/dp/1592332234

they are getting older and it makes me sad sometimes

2011-03-17T23:42:00.000-07:00

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

2011-02-24T11:47:00.000-08:00

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

2011-02-21T21:55:00.001-08:00

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

when all of your options suck

2011-02-21T21:39:00.000-08:00

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

2011-02-19T22:19:00.001-08:00

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

2011-02-06T18:50:00.000-08:00

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

2011-01-20T08:46:00.000-08:00

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

2011-01-11T23:31:00.000-08:00

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...

2011-01-03T14:40:00.000-08:00

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

2011-01-01T16:01:00.000-08:00

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

2010-12-30T22:13:00.000-08:00

it's christmastime, it's christmastime

2010-12-26T21:36:00.001-08:00

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

2010-12-19T11:33:00.000-08:00

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

2010-11-09T20:27:00.000-08:00

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.

2010-11-02T11:51:00.000-07:00

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

2010-10-05T16:59:00.000-07:00

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

2010-09-17T15:03:00.001-07:00

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

2010-08-23T22:14:00.000-07:00

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

2010-08-19T20:24:00.000-07:00

making it work

2010-08-14T17:18:00.000-07:00

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.

unresolved

2010-07-11T11:12:00.000-07:00

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.

my poor little one

2010-07-07T09:15:00.000-07:00

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.

two steps forward, one step back

2010-06-05T09:58:00.000-07:00

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.

How effed up is this? You should be angry.

2010-06-03T22:44:00.002-07:00

breakthrough week

2010-06-03T16:44:00.000-07:00

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.

this will make you happy, unless you have no soul

2010-05-22T13:37:00.000-07:00

like a dagger through my heart

2010-05-04T14:41:00.000-07:00

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.

1st broken bone

2010-04-28T12:16:00.000-07:00

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.

things are crazy right now...

2010-04-12T19:12:00.001-07:00

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.

ok go video

2010-03-02T19:16:00.001-08:00

This will cheer you right up:

frustration

2010-03-02T18:21:00.000-08:00

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.

moving on

2010-02-26T20:37:00.000-08:00

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.

guess who's back...

2010-02-16T12:11:00.000-08:00

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.

ben's moves

2010-02-03T21:51:00.000-08:00

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

current obsessions

2010-02-02T19:57:00.000-08:00

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!

conan o'brien's farewell speech

2010-01-25T17:30:00.000-08:00

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.”

silly faces

2010-01-24T20:33:00.000-08:00

wishing i had a time machine.

2010-01-21T12:53:00.000-08:00

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.

here we go again

2010-01-19T14:50:00.000-08:00

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.

2010-01-17T23:37:00.000-08:00

i'm a terrible blogger I know I know

2010-01-17T23:24:00.000-08:00

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.

events of the decade

2010-01-01T13:39:00.000-08:00

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!!

jen, this is for you

2009-12-24T22:17:00.000-08:00

I do not know what to say because I've been so busy I haven't had the time to just sit down and think and just process stuff. I had a stalker at work the past few weeks, and then there were finals and then THE HOLIDAYS! So it's been police escorts, grading papers, buying presents, etc. for the past several weeks. And now it is Christmas Eve and it has all come so quickly. Benjamin is so, so excited for tomorrow morning. And Elliott is managing the holidays without screaming in everyone's face, which is the best I can ask of him. Benjamin didn't like holidays at all before. At ages two and three, he was like the cool teenager who is too aloof to enjoy the nerdy holidays. Probably he acted like this because he had sensory issues like Elliott does. But that's out the window now, and holidays are Ben's favorite time. He likes the candy and presents, yes, but he also loves socializing with both kids and adults. He enjoys dancing and signing and laughing, all of it. When he got an "O" for outstanding on his report card for socializing, I was so proud of him. Sure, he did great on the academic stuff too, but this is a kid who would barely look at me or hug me or speak to me, let alone others, and now he's one of the most popular kids in the class. All I want is for my kids to live well-rounded, happy lives, and I'm glad he's getting there. Elliott is getting there too. He told me "I love you, too" today and he's been saying "I did it!" a lot lately. His brain is on fast-forward for learning right now, and we're taking advantage of that. My sweet, sweet boys. Merry Christmas to everyone!

thankful, thankful

2009-11-30T21:28:00.000-08:00

Yes, this is late, but oh well.

1. I am thankful for Ryan. I'm a pain in the ass and he puts up with me and even loves me for it.
2. I am thankful for Benjamin and Elliott. My life would be empty without them. I can't even imagine it before they were here. I thought I was busy with important things before they were born...but now I am busy with important things for real! I love those little boys more than anything, even though they screamed a lot more than usual today. I am thankful to watch them both grow and learn every day.
3. I am thankful for my extended family and all of the love and support they give me no matter how many times I lose my keys in their presence.
4. I am thankful for a steady job in this economy, one where I get to help people and continually grow and challenge myself. I am thankful for this despite the fact that every once in a while, a student sends me a series of disturbing emails.
5. I am thankful for my health and will continue to work hard to maintain that. If I didn't have exercise, I think I would lose my mind.
6. I'm thankful for Celexa. Not as heartwarming, I know, but sometimes crazy pills are a good thing.
7. I'm thankful we lost our house this year. I am so much happier in our new house, and its much less stressful financially. So this one was really a blessing in disguise.
8. I'm thankful for food. Because food is awesome.
9. Okay, I'm blanking now. Happy belated Thanksgiving!

the other woman in ben's life

2009-11-18T19:46:00.001-08:00

Ben's had minimum days all weeks because it's parent/teacher conference time (our first!) and so in the morning he gets to go to recess with the big kids on the big playground, which is louder and crazier than the tiny, regulated kindergarten-only playground. So he was all excited this morning because now he's gotten used to it. He ran away from me, dropped off his backpack, quickly kissed me and ran around the corner and all the way across the asphalt to the big playground.

I said goodbye to him, but I secretly followed so I could watch him. He was wearing a bright red sweater and seemed to be the only one with bright yellow hair, so it was easy to see him among the screaming and running kids all around. His confident run slowed to a jog, which slowed to a complete stop when he realized there was no one he recognized anywhere around him. He folded his hands in front of his body and just stood there, confused, vulnerable. It took everything in me not to dart across and scoop him up in my arms. He just looked so little.

But I waited. I told myself that I can't just scoop him up when he feels unsure, that he has to learn how to deal with this. I waited and waited. 2 minutes felt like forever. And then, suddenly, his friend Kimberly yelled his name, and they ran towards each other like people run towards each other in slow motion on the beach in movies and commercials. They threw their arms around each other, and Kimberly held Ben's hand and they skipped away, utterly happy. And a part of me was so happy that he is doing so well in kindergarten, that he has good friends who love him and accept him. But every day, he grows more independent from me. I know this is all part of the deal, but it's such a bittersweet feeling; it makes me incredibly proud and incredibly sad all at the same time.

creepiest. sales pitch. ever.

2009-11-16T22:32:00.001-08:00

sweet boy

2009-11-14T08:13:00.000-08:00

I know it has been FOREVER since I posted...but I did move AND get tenure (yay!) and battle the flu in the last month.

What I want to write about today is Elliott's progress. We saw the new Defeat Autism Now (DAN) doctor in Irvine, Dr. Barrett mid-October. She was kind and balanced and thorough and she took Elliott off of the 24 supplements he was on and put him on 5, which is much more manageable and less costly. Within two weeks, we saw huge improvement, but I am not sure if it is the supplements or the applied behavior analysis (ABA), or both. ABA is when they come in our home five days a week for 2 hours per day and work with Elliott on his behavior and social skills. The goal is to replace his non-socially acceptable behaviors with behaviors that are more appropriate and to break tasks into tiny steps so that he can accomplish them more easily. We got the best company in our region, AST, and I'm so happy about his progress with them as well. Back to our doctor. She is working to get rid of a yeast overgrowth that he has in his belly, and we've seen results. Elliott told me he loved me for the first time. And he also told his grandma he loved her too. He has been playing with Ben, trying to talk, learning his body parts, trying to help dress himself, etc., things he didn't do as well or at all before. He seems less likely to tantrum and more "normal" in general. He even did well on Halloween--he kept his costume on and said "Trick or Treat" and didn't scream. That's a major success for us! So this month has been busy, but really good. We are settled into our house now, and we really love it.

This post is about Elliott, but Benjamin is doing really well, too. He's doing really well in school and he's been loving and kind to his brother and everyone else for that matter.

I'm really enjoying the boys at this age.

pumpkin patch '09

2009-10-30T18:05:00.001-07:00

Elliott's school picture! Ben's is coming soon!

2009-10-30T12:49:00.000-07:00

ben's bday pics

2009-10-15T10:40:00.000-07:00

Let me preface this by saying, remember when Elliott was screaming the whole time at his birthday? Yes, that is why some of you are not featured in these photos. We were just trying to get through it together.

at least they come by it honestly

2009-10-12T11:10:00.000-07:00

There have been days when I have ripped off my toenail while rushing upstairs to provide Ryan with an Ativan to soothe his panic attack, the kids' wailing following me up the stairs. There have been days when I have sealed myself into the laundry room just to catch my breath and momentarily get away from the intensity and chaos. I have one student right now, one out of one hundred and twenty, who does not approve of the job I am doing as his professor, who emails me daily about it, and though he is in the minority, he is all I can focus on. When I get really angry or really frustrated, I throw things or smash them and want to punch someone in the face.

I'm a perfectionist with an anger problem.

So it should not surprise me that my children enjoy screaming. That if Benjamin cannot replicate Disney's rendition of Mickey Mouse EXACTLY that he will crumple up the paper and throw it to the floor and proclaim that he is a "terrible drawer," that he "ruined it," that he "hates Mickey."

It shouldn't surprise me that upon politely requesting Elliott's presence in the living room so that I might change his applesauce-laden shirt, he declines by throwing his body back into the floor, screaming red-faced and kicking in protest.

Sometimes things get intense in our household.

So last week when we moved, I was prepared, but it didn't make things a lot easier. Elliott did remarkably okay even though he started is behavioral therapy (yay!). Benjamin, fresh off the high of his fifth birthday party at Chuck E. Cheese, began obsessing worse than he has in at least a year. This time, it was about his mouth. His discovery of his own saliva, what he calls "water," freaked him out--he thought I was putting water in his cereal, his soup, his milk. He thought people at school were spiking his cupcakes with water. He tried frantically to get the water out of his mouth by putting his fingers in there and rinsing his mouth out, which only generated more saliva. Then it was his lips. My lips are touching the pillow, my lips are touching my shirt, my lips are touching the blanket. Mom. Mom. Mom. Mom. Dad. Dad. Dad. Mom. Often, this constant stream of worries came at four A.M. It didn't help that his teacher was absent all last week in addition to everything else in his life changing.

But this weekend was better. He slept past four. He had the same concerns, but they are much less frequent and more easily soothed away. The house is unpacked. Our life moves on. We've made this move to lessen our stress, so here's to making that happen one day at a time.

interruption in your service

2009-09-27T22:58:00.000-07:00

Hey all four of you out there who read this,
I've got a message for you.
While I get my life back in order, I will be posting updates less frequently.
But know that we are okay, that we are getting through this time, that our family is happier than ever, even though everything is crazy with a capital C.
Plans for October:
Move, throw Ben the best birthday party ever, write a self-evaluation and then get observed by four colleagues, get tenure approved (yay!), start a new battle with Inland Regional Center for services for Elliott, see a brand new DAN! doctor for Elliott in Irvine.
And if I make it through to the other end of this month, then I will spend a whole day watching Oprah and eating oatmeal in my pajamas. Because that's how I roll.

material for their tell-all memoirs

2009-09-19T22:57:00.000-07:00

Today we signed the lease for a house. We will move next month. It is a really beautiful, big house, in a wonderful neighborhood and I feel that we will be happy there. I am relieved to be leaving this house behind, to be free from the prison of those ridiculous payments and constant repairs. But sitting here right now, I feel sad because I have worked so hard to make this place our home, and we are going into yet another blank canvas and I will have to work so hard again to make it feel like home for the kids, to make this transition as smooth as possible for them. I know no matter what I do, there will be a transition, and it will be difficult. Benjamin and Elliott are not known for their transitioning skills, though Ben has grown much less rigid with age.

And then, maybe in a few years, we will have to do this all over again.

I know we have no other option right now.

I hope they don't hate me for all of this.

happy birthday to me!

2009-09-06T21:23:00.000-07:00

Well, I am 30 now. I'm don't really get sad about aging, even though I joke about it. I guess I really have everything I want and need and so I don't feel antsy about getting it. (Recently removed from list of things I want: a house.) There is no clock ticking down for me. In fact, I am excited about this year. This last one has been one of the more difficult years. I have been challenged but I have also grown a lot. And I have aged a lot. I feel older because I don't sleep as much as I should--I am not capable of it for some reason--and I worry all of the time about everything. But I also think I've realized how much stronger I am than I thought I was, particularly with all of the fighting we have done for Elliott's health. He had a hard week as far as his behavior, but today he barely tantrumed and he said all sorts of words. He even said "Brush my teeth please" CLEARLY. Prompted, but still. I would have never imagined him saying that even a month ago. His voice. It is so nice to finally hear it.

Ryan and his family threw me an amazing birthday party. As everyone was singing "Happy Birthday" to me, I got really emotional and almost cried, which surprised me. Everyone was so kind and so generous and it made up for the hard weeks and even months that have recently passed. I feel very loved and I am more grateful than I can say. In a year from now, I want Elliott to be talking to me and making friends at school. That is my birthday wish and I want it with all of my heart and I will work so hard to make it happen. I want to be a better person, to simplify my life, and to make better decisions.

We are moving in a few weeks, and it feels like everything is changing and nothing is changing because I still have all of these people that love me, that love our little family, no matter where we go. So, here's to 30. Now it's time to plan Ben's Scooby Doo birthday party at Chuck E. Cheese. God help me.

swallowing my pride

2009-08-30T08:45:00.000-07:00

I went to six different schools before I hit the sixth grade. I didn't mind the moves so much at first--each one was a chance to start over, to become a new Angela--and I didn't realize it at the time, but the moves were hard on me. I know my parents didn't plan on them. I remember how excited we all were when they bought the house in Highland and we would live in a normal tract home and be a normal family and not some troupe of roaming gypsies. The last two places before Highland were a motel called the Goodnite Inn, where our family of five lived in one room for four months, and my dad's property in Calimesa, a dusty piece of land unconnected to the city that surrounded it. In Highland it was different. There were paved roads! And sidewalks! And neighbors!

I have always found comfort in the fact that despite my unconventional upbringing, despite all of our unconventional upbringings, I--we--could force things to be better, to be the way that we wanted them to be, with just a lot of hard work and determination. And so I got married, worked four jobs through undergraduate and then graduate school, moved back pregnant, had a baby, got a full-time job, had another baby, bought a house. All before I was 28. I have watched my other friends, sometimes enviously, taking deep breaths and moving slowly and probably enjoying things more, but I have told myself I like this whirlwind, that I thrive on challenging myself.

I am blessed and I am happy in so many ways.

But I am tired.

We are searching out every possible treatment for Elliott. We have maxed out our credit cards doing so. But, of course, I thought I had it all under control. Because I always do. It is always under control. Except it wasn't.

We had had a two-hour appointment in which we were informed of all of the problems going on inside of Elliott's body and the various and seemingly endless possibilities for treatment. It was overwhelming and it made me sad and it made me wish that none of this were true, that I would wake up and he would be fine the next day. I stumbled out in that emotional state to the reception desk. When I went to pay, my credit card was declined. A second card was declined. I tried to fight it, but tears began slipping out of my eyes and I felt helpless and I wished I could disappear. I normally am not as aware of what a big person I am, but in that office, I felt enormous, out of proportion for the tiny, clean office, a gigantic mess of an intruder. An intruder who couldn't pay.

The office girls were nice about it. "Call us," they cooed. "It's okay."

I got the hell out of there and went into hysterics in the safety of my Toyota Matrix.

I was out of control. Everything was out of control. Things needed to change.

Ryan and I have sat down and made lists and cried together. We have cried until we can't cry anymore. We are exhausted. We are sick and getting sick and our house is a mess. We haven't opened all of our mail. Our laundry has not been put away. It is chaos here.

And we have decided that we need to simplify. That we are tired of all of this fighting. We have good jobs and we have amazing kids and we have so many wonderful things in our lives.

We are thinking of walking away from our house. In fact, we are pretty sure we are going to do it.

We are thinking of starting over, of simplifying, of ignoring our pride and putting Elliott and Benjamin and our sanity first.

This is a tremendous blow to my pride, to my philosophy of forcing things to happen even when they seem impossible. I am tired of forcing it. I just want to enjoy my life and help my little boy get better.

I wanted something different than what I grew up with. I didn't want the constant moving, the lack of stability. I convinced myself that I could control all of that. But maybe I can't. I am ready to let go. I am ready to change. I am ready to start over.

more progress! YES!

2009-08-19T17:42:00.001-07:00

It's a day to day thing. Sometimes there are a string of days when Elliott screams and won't look at us and nothing seems to make him happy. But then there are days like today and yesterday. He said goodbye to everyone at preschool as he strolled down the hall. Ryan took him to a friends house and he played cars with Ben and his little friend Peregrine. Not on the other side of the room. Not next to them. WITH them. All I want is for him to be happy and balanced and have meaningful relationships with other people. On days like today, I can see it. But the waiting, the tedium of these incremental improvements, the time--sometimes it can feel unbearable. But we look back at 6 months ago and see a completely different boy and so we just keep doing everything we can.

kindergarten interview

2009-08-12T21:20:00.001-07:00

the list you've all been waiting for

2009-08-11T19:22:00.001-07:00

Ben has been asking me for various toys for about six months and I keep telling him maybe for his birthday. Then, after his birthday, I will go with Santa Claus. And then back to his birthday. It's an incredibly useful cycle that saves me money, though I suspect he'll be less satisfied with this as he gets older. When I finally got around to sitting down with him and making a wish list, he got a really confused look on his face and struggled to come up with stuff. Here is his list, in his words:

1. Land Before Time dinosaur toys
2. Green shirt guy and his car
3. Candyland princesses
4. Scooby games that aren't too hard
5. Scooby shoes
6. Scooby toothbrush
7. Robin and Batman
8. Spiderman
9. Ben 10's friend who touches gray things and turns to gray and touches yellow and opens them.

Not only is the above list often confusing and/or random, Ben needs none of it. But there it is.

Tomorrow he starts kindergarten. We went to orientation tonight and his teacher seems very friendly and intelligent--I packed his lunch and put a little note with a heart and MOM and DAD printed in it. Here's to his new adventure away from me--for the next 13 years...

on the subject of b-12 and other aspects of our lives

2009-08-07T09:01:00.000-07:00

Okay, so I know I haven't posted in a while, but I have Facebook to keep up with! In any case, I promised myself I would keep track of everything we are doing with Elliott. So here goes. We got his labs done last Friday and will get those back soon. We have also started him on methyl B-12 shots. These are tiny insulin needles, but it is still incredibly nervewracking to inject him in his butt with this every day. However, he started saying words this week, regularly! He even recognized letters and numbers by sight, both at home and at school. Many people claim that there is a placebo effect with B-12, that I wish that he will change and so he changes, but I have seen real progress this week, and I can't wait to see what happens in the next month. Maybe it's not the B-12, maybe it is the endless speech and occupational therapies. Whatever it is, we will continue doing all of it because he's getting better and better every week. Benjamin told me that they gave Elliott a pretzel at Kids' Club at the Y on Wednesday, and then he said, "Mom, you need to put a sign on Elliott that says 'no wheat and no dairy.'" He is already looking out for his little brother, which just makes me hug him hard.

Last weekend, we spent time with the kids Aunt Jillian and Uncle Morgan, and we had an amazing time. Elliott slept incredibly well and seemed happy most of the weekend. We discovered that he cannot take the sand on the beach. He swatted at it and screamed until Ryan and Morgan drove him back to the apartment, but Benjamin had a wonderful time in the water--he even saw dolphins and caught sand crabs. We are going to try and spend the weekend with Jill and Morg more often because we had such a relaxing and wonderful time with two of our best friends and the kids loved (almost) every second of it, too.

Elliott loves his preschool now and happily traipses into his classroom without even a whimper three days a week. Benjamin has been home with us but he starts kindergarten on Thursday. We peered into his classroom last night when we were walking the dog, and he told me he is excited. I ordered a Scooby Doo backpack on Ebay and that sucker better come soon because the guys promised fast shipping. He will suffer my wrath on the feedback forum if he is lying about that.

Sorry for the randomness. This is my life.

elliott update

2009-07-23T13:08:00.000-07:00

Before we get to the Elliott update, a quick p.s. on that bully at the pool. His name is Todd and his favorite place to go is McDonald's. He grabs at the girls under the water. If that kid doesn't grow up to date-rape someone, I'll be shocked.

In the past few months, Elliott was rejecting anything that was soft or mushy in texture, forcing me to buy freeze-dried versions of fruits and vegetables and to saute meats until crispy so he would get some protein. However, in the last week, he will eat anything I put in front of him. Today, he had a broccoli and ham omelet. He eats adult-sized quantities of everything I put in front of him, all of which is new: potatoes, bananas, sweet potatoes, green beans, squash, chicken, beef, black beans, cauliflower, eggs, pears, strawberries, lentil beans...the list goes on and on and on. It's pretty awesome, given that he can't eat dairy and wheat; now I don't have to worry about him getting the nutrients he needs.

We saw a biomedical doctor last week for him as well, and she has ordered a series of labs to see what is going on in his body. This means, that I collect his poop and pee and mail it to people to examine; it's so much fun! Based on all of the research I am doing, autism is really not understood and is actually a combination of symptoms caused by toxic overload in the body. We are going to work to clean Elliott's system out and see if it helps. He's already making tons of progress. Today, he pointed at the colors red and black, saying the words clearly. Yesterday, he said cupcake clearly. Last weekend, he said the words on several flash cards. He still isn't doing it spontaneously, but he's getting there. We have him on a multivitamin, cod liver oil, and enzymes, and each week we add something new. I have learned so much about our immune system from the several books I'm reading. I have to say, the Jenny McCarthy book Healing and Preventing Autism, is really informative and enlightening. It says the sames things as several of the other books but in a much more accessible way. I've been making my way slowly through it because it's still very dense and very science-y, which everyone knows is not my strong suit. I know people hate Jenny McCarthy, but I really think that if you hate Jenny McCarthy, then it's more about you than it is about her. She has worked really hard, with a doctor, to help her son, and she simply wants to share what she has learned so others can benefit. Mainstream doctors write all of the biomedical stuff off, and there are no major clinical studies of anything, largely because there's not much money in it. How sad is that? All I can say is we will do whatever we can to help him and making his immune system strong and clearing the toxins out of his body isn't going to hurt. Sometimes I feel like a crazed hippie when I explain all of this to people, and I guess I kind of am. Maybe I'll stop wearing deodorant, too.

I'm not sure how I'm going to keep up with all of the appointments and work--this really is like having a second job--once the semester starts back up again, but we'll make it happen. We always do. I am really looking forward to the day when I can say that I am bored.

bullies

2009-07-15T08:21:00.000-07:00

When Ben was in the pool for his swim lesson on Monday, some kid accused him of spitting water out. He went up to all of the other kids and said, "This kid spits water out! Look at him!" Everyone looked at Ben and Ben, behind dark turtle shaped goggles, sadly put most of his face in the water and stared straight ahead, in an apparent attempt to disappear. This kid was very obnoxious and the other kids ignored him. Ryan went and spoke to Ben to reassure him and the swim lesson went on. The father of this kid looked on, not seeming to care.

I know this is normal, that this will happen in kindergarten, that we won't be there to protect him. But my god, it is more painful than I thought. The best way to handle bullies is to not let them know they are getting to you, but I was the worst at that when I was a kid. I remember when my dad chopped all of my hair off and everyone at school called me a boy and I got so mad I started shaking and sputtering all over the place, unable to spit anything back. And the torture just got worse because of that. I've never had a good poker face, or a poker face at all. Maybe I should listen to more Lady GaGa. In any case, we told Ben that he needs to ignore kids when they are mean like that, to seek out the nice kids to play with. And if it gets really bad, to tell his teacher. The way I really want to handle it? I want Ben to point out the kid so I can pick him off on the playground to see if he has any bully left in him when he comes face to face with me. Ben can be obnoxious, but he is never mean to other kids and he is really sensitive. I feel like I'm throwing him into a den of coyotes sending him to kindergarten. This parenting thing is HARD.

the kids

2009-07-15T08:20:00.001-07:00

little pool babies

2009-07-15T08:11:00.000-07:00

This is the video we will use to blackmail these three when they are teenagers. "You think you're cool? Well let's see what your friends think about THIS!" Seriously, three kids under 4 and there is no screaming. (There was plenty immediately afterward.) During this visit, Louise and Benjamin became best friends and kissed each other every day. They will never remember not knowing each other, which is so awesome.

crappy day? me too. this will cheer you up, though.

2009-07-10T12:28:00.000-07:00

mysterious boy and social pressure

2009-06-29T16:57:00.000-07:00

Two separate stories here:

Elliott was never a cuddly one, not until about two months ago. Now, when he wakes up in the morning or after a nap, one of my most favorite things is that he put his full weight into my body and just clings onto me and rests his head against my chest. After over two years of not cuddling with me, he will just lie there for several minutes until he lifts his head and runs away to play or find snacks in the pantry. Lately, he's been a momma's boy, clinging to my skirt as I walk around the house, demanding that I see every toy he finds. He says a version of "Look what I got," and finally shows interest in picture books and he wants me to see everything he has found. Which I have to say, feels amazing, even if it's difficult to go to the bathroom when he is trying to wrestle his way into my lap. I still worry about him, often at night, before I fall asleep, the time when all of my anxiety bursts through my brain. I was telling Ryan that the most difficult thing right now is that he doesn't talk, and sometimes I feel like I don't really know him yet because he can't communicate with us and oftentimes, we can't communicate with him. He's getting there, every day, every week, but it's a painstaking process. I can't wait to hear what he has to say.

On an unrelated note:

Benjamin has been very interested in Hello Kitty. He has a Hello Kitty watch, backpack, and photo album (thanks, Jill!). Yesterday, he was wearing his pink Hello Kitty watch, and as we were getting ready to leave for the park, he said, "Mom, can you take off my watch? Everyone thinks it's for girls." He wasn't sad, he was just matter-of-fact. And I took it off of his wrist for him. I knew this was bound to happen, that it's probably a good thing to happen before he starts kindergarten and kids make fun of him, but there is something just a little heartbreaking about it. He was completely confident in his interests--wide-ranging as they are--but that now he is aware that others will find fault with him for this. Here is a kid who loves pink mermaids, but who wants to be Scooby this Halloween and Batman next Halloween, who takes baby clothes out of my hand, assessing them before I give them to a friend who is about to have a baby, nods his head in approval, and says, "These are so cute, Mom." I love that he is such a unique boy with a giant, beautiful heart, and I just never want him to feel bad about himself.

velma's secret desire

2009-06-23T21:34:00.000-07:00

Benjamin is nursing an obsession with Scooby Doo that is threatening my sanity. He carries "the gang" with him everywhere he goes, cautiously buckling them into his booster seat with himself, carefully covering them with his blanket at bed time, propping them up next to him when he eats. He wants to watch Scooby Doo all day long--it is the first thing he asks me about in the morning, he talks about it all day, and he talks about it at bed time. When he isn't watching Scooby, he wants to play Scooby with the action figures. I reluctantly agreed today, and he eagerly gave me Velma and Scooby--he would play Daphne, Freddy (as he calls him), and Shaggy. "Let's solve a mystery," he exclaimed. So we solved a mystery--the "bad guy" was a dog puppet. After the gang attacked the puppet, Ben said, "Let's see who it really is," and whisked the puppet off of my hand and put my hand in jail. Then, he said we needed to give Velma a birthday party. He had Freddy make her a strawberry cake, her favorite, and then she made a wish and blew out the candles. Curious, I asked him what Velma had wished for, and he got a very shy, serious look on his face, held Velma face to face with Freddy, and had Velma say, "Freddy, I want you to love me." After hours of watching Scooby, Ben has picked up on an Velma's unspoken desire and finally given it a voice.

back from ohio...

2009-06-15T23:07:00.000-07:00

Had a great time visiting my relatives in Cleveland, but I missed Ryan and the boys so much. My grandma used to kind of have a mean streak but now she is in her nineties and has become very pleasant, very likely because she doesn't remember what she was bitter about. I'm not sure about her long-term memory, but I know for sure that she has no short-term memory. She asked me whether or not I had kids about five times in five minutes. I painted her fingernails the brightest shade of red and all the other ladies in the home were jealous. My grandma can barely talk anymore, but she actually seems happier than I've ever seen her in her life. My relatives out there were very kind and I enjoyed getting to know them as an adult. I returned late on Sunday night to find Ben watching Scooby upstairs. "I have the whole gang," he said, showing me the toys Ryan bought him. He refers to them as "the gang" because they do so on the show, and he sounds as though he is from the 70s. Ryan let him stay up to see me, and though he's not the sort of kid that runs into your arms, I knew he was happy to see me. After about five minutes, he looked at me and finally realized he missed me and hugged me. In the morning, he was so happy I was there. Elliott didn't seem to react any differently this morning, but the poor little guy had a very bad ear infection today and I had to take him into urgent care tonight. Elliott always seems to have a tough time. It really isn't fair. On the way home from urgent care, we went through all of the animal sounds, which he repeated in his way. "We're home," I said, as we pulled into the drive. "Ooooome," he repeated. He is trying. I'm convinced he will get there. Ryan and the boys had a lot of fun this weekend--he took them to Oak Glen and Forest Falls. Ryan had his first day of summer school today and he is tired, but I'm glad I get to be home with him again, even if we still haven't been able to even relax together.

some days are harder than others

2009-06-07T19:51:00.000-07:00

We got the diagnosis from the Kaiser diagnostic team on Thursday that Elliott has autism spectrum disorder. This confirms what the neurologist from Kaiser and developmental specialist from the Inland Regional Center have told us. I like to think I'm very in control and so I took the Kaiser diagnosis in stride; I didn't feel bad about it at all. I felt like, okay, we will continue to work on this and everything will be okay. (The back of my mind screamed, what if it isn't okay? but I tried to ignore this.) The teachers from IRC began to work with him this week (3 hours per day, every weekday), something I've been fighting for for the past five months. But suddenly this afternoon, I started to feel really sad. Elliott has had a difficult week--he isn't sleeping well and Disneyland threw him off of his routine. He screams. And screams. And it's not as bad as it was before the diet change, but it's still a hell of a lot of screaming and sometimes it just gets under my skin. Everyone always says that this age is so much fun, but for Ryan and me, this age fills us with anxiety and fear and stress and heartbreak and frustration. This is punctuated with fun, but it is difficult to have fun when you don't know if everything will be okay. I don't know why both of our kids have had such a hard time. And I know it could be worse. I know they could have cancer or missing limbs or terminal illnesses. But it's still really hard right now. I feel bad asking anyone, even family, to babysit him. I'm scared that no one really likes being around him--or us--and sometimes I just feel extremely isolated. I know I will pick myself up tomorrow. It's just been a long day.

2009-06-03T18:07:00.001-07:00

disneyland

2009-06-03T17:58:00.000-07:00

We survived our 2nd family vacation! Elliott was so much better than he was last year--he didn't run in front of a stroller once, and the first night he slept until 7 in the morning. This morning, he woke up at 4am. 4 A.M. It was horrible. He kept sitting on my head and fake sneezing. Everyone thinks that is really cute, but it isn't when he's done it 30 times before the sun has risen and each time I have to wipe his nose. At around 5, I put him back to sleep and he woke up again at 6, so at least we got an extra hour. The boys did really well. Ben was very excited to see Mickey again, and he got to swim in the pool at the hotel for 2 hours yesterday. Aunt Jilly hung out with us the second day and we had a lot of fun (minus a corn dog incident!). When I was a kid, our family vacations tended to be stressful, and I think we pulled this off without any of that. It's cool right now because the kids don't have any expectations--we go on a few rides, we relax, we play at the Toon Town playground, we go back to the hotel. In fact, we had to talk Ben into going back to Disneyland yesterday evening. He wanted to stay on his "magic bed" (the sofa bed in our hotel room). All in all, vacation accomplished.

ben graduates!!

2009-05-20T23:55:00.000-07:00

say my name

2009-05-14T17:20:00.000-07:00

Last night, Elliott said all of our names. Well, all except one. Mine. He said Daddy and Ben and Mookie. (Mona was off sulking in the other room.) He even said Elliott, which seems to me to contain more complications and syllables than Mommy. But the good news is, he is talking more and making so much progress. He still throws tantrums and avoids eye contact a lot, but WAY less than before, so that is amazing news. Today, I spent $45 just on special snacks for him because he's suddenly become weird about textures. A small container of freeze dried vegetables alone costs FIVE DOLLARS. His special bread costs about double as well and I had to buy him protein powder to supplement because he won't eat meat now and he can't have any dairy. I'm also going to try to make him baked tofu, and I bought him these special flax snacks which are expensive and smell like mold, but he actually really likes them. Because that's just how he rolls.

anxiety

2009-05-13T10:33:00.000-07:00

Last night, right before I left Benajamin's room and he was about to go to sleep, he said, in a panicked voice, "Mom, I don't want to grow old. I don't want to be 5." I asked him why and in his pre-teenager mode he shrugged his shoulders and said, "I don't know." It eventually came out. He said he wouldn't get to see his friends anymore and there wouldn't be any paint or books in kindergarten. He was almost on the verge of tears. I assured him that there would indeed be books and paints in kindergarten, maybe even better ones than there were in preschool, and that we'd invite his current friends over when we could but that he'd make new friends too. "I won't like them," he told me. I gently reassured him that he might like them. Ben has never been good with change, so we've been preparing him for kindergarten since last summer, taking him by the school, letting him play on the playground, discussing it with him. He is ready academically but I am nervous about how anxious he will be once school starts in August, and also how anxious we will both be. Because even though he's been in pre-school, kindergarten is a whole new frontier. A whole new level of letting him go into the world and begin to have his own separate life outside of the safety of our family. His preschool is on Ryan's campus and Ryan can check on him at any time. That physical proximity is important, even if it is illogical. It will be hard for me to know that he is in a classroom miles away from Ryan and me, navigating the new friends, the new teacher, this whole new segment of his life. I know he will be teased at some point, that this is normal. But it doesn't feel any better to know this. It doesn't stop me from wanting to hug him every minute he is at school, fending off the mean kids. I didn't realize it before, but I am anxious too. I know he is ready, but it doesn't matter. I won't let him feel any of this anxiety of course, and we have a few more months to prepare. Everyone always says, "they grow up so fast." And it is true. They do.

a big fat thank you

2009-05-12T20:20:00.000-07:00

Last week on this exact night, I was crying my eyes out. Elliott wasn't going to get his surgery and nothing was working out. Now, he is all lined up for the services he needs this month, the surgery went splendidly (or as close to that as possible), and even my work is under control, despite the fact that it is the end of the semester. And on Mother's Day, I got to sleep in and buy myself a bicycle and drink pina coladas while Ryan did the heavy lifting with the kids. As a result, so far this week is a wholly different experience thanks largely to one person--Ryan. Even tonight, Elliott was grabbing at his ears and screaming, so Ryan drove him all the way to Fontana for urgent care so we could see if he has an infection. When I can't keep my shit together, Ryan is there to rescue me, and I am so grateful to him for that.

click click take a picture

2009-05-06T20:07:00.000-07:00

Each night after bath, two books, and a discussion of what we did today and what our favorite parts were, Benjamin says, "Click, click, I took a picture." And we say, "What is it?" and he goes into a long-winded story usually involving Diego or Mickey going to an ice cream store and getting poop ice cream cone and then eating the poop ice cream cone and pooping on someone's head. There are endless varieties of this same plot and when Ben is done telling us this story, he makes us tell him another variation of it. If we try to leave poop out of the picture, Ben says, "No" and then adds poop into the story again. I'm guessing this is what it will be like to have two boys and Ryan in the house, so I'd better get used to it. Ben thinks these stories are so funny and he laughs hysterically at each one even though they are nearly indistinguishable from the stories that came before them. Although I don't find poop nearly as hilarious as he does, his happiness always makes me smile. He also has this continuous fixation with Uncle Keith. Tonight, he said Uncle Keith is a tree with branch arms and a leafy head and a trunk for a body. It's been a really long time since he saw Uncle Keith, but apparently, he made a big impression. Ben has this amazing and detailed little world in his head, and I love bedtime because he lets me in. Even when so much poop talk is involved.

the (minor) surgery

2009-05-05T18:38:00.000-07:00

Last night, I had just about had it. Last time Elliott's ear tube surgery and hearing exam was scheduled, he got so worked up that they thought he had a cold and they canceled the surgery, after weeks of waiting. I spent several more weeks waiting and placing weekly calls to annoy the nurses into fitting him in. During my weekly call last week, I got lucky and they told me there had just been a cancellation. Could I take off work and bring him in on Tuesday? Yes, I could. At the pre-op on Monday, they poked and prodded Elliott and made me walk him all over the hospital. He was understandably annoyed with the TWO HOUR wait, and this old man named Uncle Floyd started complaining about him, and about my mothering skills. I was this close to giving Uncle Floyd something to complain about, but his niece was kind and deflated the situation. I am so sick of people making me feel like there is something wrong with my kids. It makes me angrier than anything makes me. Angry enough to punch an old man with a walker in his veiny, red nose. Instead, I cried a little and went to work and taught badly because my mind was elsewhere.

And then last night, Elliott got a small fever. And a little cough. And then Ryan told me this kid at day care had a 104 degree fever and his mom didn't take him home. I was crushed. The stakes are so much higher with Elliott because he is meeting with all of his specialists this month and if we didn't get his hearing squared away, the appointments would be useless. I've been under so much stress writing letters and calling people and carting the kids around to all of their specialists' appointments. I felt like I had worked so hard and it had all come down to this: failure.

So I went to bed defeated but I set my alarm for 5:15 and I prayed Elliott would wake up with out the fever. And he did! No food or drink was allowed for the little man until 9am, so he was extremely agitated. Yet, I couldn't let him cry because they might cancel the surgery again. I felt as though I had this (cute) time bomb on my hands for hours, and each time the nurse took his blood pressure or affixed a bracelet to his wrist or looked at him too long, I winced in anticipation of his screams and head banging. There was a little of that, but I had a bunch of toys and I let him do stuff I normally wouldn't just so he would keep it together. Want to play with the doctor's computer? Sure. Want to grab the blinds on the window? You got it. Play with the I.V. holder thing? Absolutely. Finally, just when I thought he couldn't take it anymore, they took him from me and carried him down the hall. He didn't cry when they did that, which shocked me, and as the door closed on him, he did a little fake sneeze, and I felt sad and nervous for the next 45 minutes.

The surgery went fine, and his hearing is perfect. Which is a relief and leads us to the next step in finding out what is wrong with him. When I went the get him, two nurses were struggling with his red and screaming body. He had been trying to rip the I.V. out of his arm and they were attempting to tape it down. They told me his screaming was a reaction to the medication, but as it kept worsening, it became clear (as I knew all along) that this had more to do with his personality. "We have a reputation," I told the nurses. They wanted to wait until he calmed down and drank some juice before they discharged us. I told them this would never happen. Eventually, they believed me and let us go. As soon as we were in the hallway, he stopped crying, and he drank his whole juice on the way home.

So I don't feel like a failure anymore, even though I'm still anxious to find out more about what is going on with Elliott. The Inland Regional Center is finally working with me rather than against me to get more services for Elliott, and I'm hoping my letter writing, phone calling campaign will subside pretty soon. My hope is that this will all be a funny story some day...

elliott and benjamin update

2009-04-26T22:40:00.001-07:00

I'm keeping track of Elliott's progress on here as regularly as possible. I'm guessing that some of these details may be mundane but they are a big deal to us.

So...

New things Elliott did today:

1. Tried to say "jump"
2. Kissed Ryan and me spontaneously dozens of times
3. Smiled at me from across the room, waiting for me to smile back
4. Played hide and seek behind a curtain, laughing so hard he started hiccuping
5. The best one: tried to say "I love you" back to me when we got home. He tried to say it again to Ryan seconds later.

He was also tantruming pretty bad today, but this is after days of almost zero tantrums, which is saying a lot for the angry storm that Elliott usually is, tearing through the house, throwing everything in his path, collapsing on the floor and hitting his head. He did some of that today, but nowhere near as bad as usual, and this was after a lot of socializing yesterday and a bunch more today, which I'm guessing exhausts him. He was also doing a lot of sounds out of context--mimicking rather than communicating--and the only one he is really doing now is the fake sneeze. He probably fake sneezes 50 times a day. It's cute, but I'm trying not to encourage it because he replaces real communication with it. I will say "hi," and he will fake sneeze when he knows how to say "hi" already. But I think it's encouraging that he isn't running through a bunch of random sounds anymore, that this is really the only one he is still doing.

He has had no wheat or dairy for 8 days now, and he's had barely any sugar. I don't even think he's had one preservative or chemical or anything bad at all this past week. We're also doing brush therapy with him three times a day, and giving him a multivitamin and omega-3 fatty acids.

I can't stop talking about the progress he is making, wondering what new thing he will do tomorrow, hoping he will be in a different place in a month, six months, a year. Am I reading into all of this too much? Maybe, but I don't think so. I'm generally not the overly hopeful type.

So, all this attention on Elliott has been hard on Ben and he is turning into a bit of a whiner. When I say a bit of a whiner, I really mean that he whines pretty much all day, punctuated with times when he is not whining. He is a sweet and loving and funny boy but I do think he is feeling how much attention we are giving to Elliott, even though we strive to make them both feel included as much as possible. So we are going to make sure we set some time aside to spend exclusively with Ben. Hopefully that will help.