Thursday, December 24, 2009

jen, this is for you

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!

Monday, November 30, 2009

thankful, thankful

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!

Wednesday, November 18, 2009

the other woman in ben's life

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.

Saturday, November 14, 2009

sweet boy

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.

Thursday, October 15, 2009

ben's bday pics

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.

Monday, October 12, 2009

at least they come by it honestly

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.

Sunday, September 27, 2009

interruption in your service

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.

Saturday, September 19, 2009

material for their tell-all memoirs

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.

Sunday, September 06, 2009

happy birthday to me!

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.

Sunday, August 30, 2009

swallowing my pride

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.

Wednesday, August 19, 2009

more progress! YES!

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.

Wednesday, August 12, 2009

Tuesday, August 11, 2009

the list you've all been waiting for

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...

Friday, August 07, 2009

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

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.

Thursday, July 23, 2009

elliott update

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.

Wednesday, July 15, 2009

bullies

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


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little pool babies

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.

Monday, June 29, 2009

mysterious boy and social pressure

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.

Tuesday, June 23, 2009

velma's secret desire

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.

Monday, June 15, 2009

back from ohio...

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.

Sunday, June 07, 2009

some days are harder than others

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.

Wednesday, June 03, 2009

disneyland

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.

Wednesday, May 20, 2009

Thursday, May 14, 2009

say my name

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.

Wednesday, May 13, 2009

anxiety

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.

Tuesday, May 12, 2009

a big fat thank you

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.

Wednesday, May 06, 2009

click click take a picture

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.

Tuesday, May 05, 2009

the (minor) surgery

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...

Sunday, April 26, 2009

elliott and benjamin update

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.

Friday, April 24, 2009

ugh

Yesterday I noticed a little pool of water where the wood floors meet the stone of the fireplace. Since there are often puddles of mysterious substances on my floors (see: kids, cat, dog, and sometimes Ryan), I just wiped it up and didn't think about it. But this morning, the puddle was back, and slightly bigger. There is water coming up through my living room floor. I have a home warranty that never seems to cover anything, so I called and we have an appointment tomorrow and I am guessing they will not be able to cover it, but they will be able to charge me a 55 dollar service fee.

So, yeah, there goes our savings. We really wanted to go on a trip next summer to celebrate our 10th anniversary. I hope this doesn't ruin our plans...

Thursday, April 23, 2009

progress and the neurologist

Yesterday, Elliott made more progress. He pointed to his eyes and Ryan's eyes when asked to do so, and he generally seemed calmer and happier. Today, we met with the chief pediatric neurologist at Kaiser. He wasn't the warmest man, but he seemed to know what he was talking about. He told us that Elliott is smart, but that it's a matter of "unlocking" that ability, and then he diagnosed him with autism spectrum disorder, which basically means he has a lot of autism symptoms without actually having autism. I am okay with this diagnosis because it means that we get a lot more help, both from Kaiser, and, after much bitchiness on my part, from the county regional center. The doctor actually thinks the prognosis is excellent because we are working with him so early. He seemed skeptical about the new diet we have Elliott on, but he said it wouldn't hurt, so obviously we will keep him on it. I got a whole book of exercises to do with him and I'm going to do a few a day and see how it goes. A lot of them are things that Ben will have fun with too. I have a renewed sense of energy about all of this. I feel like we can work him through this and that he will be fine, whatever the label they have put on him.

Thank you to everyone for your kind thoughts and messages--it really does help. :)

Tuesday, April 21, 2009

holy crap!!!

My sister bought me this Jenny McCarthy book about "healing" autism through diet, along with a cookbook. Basically, Elliott can't eat any wheat or dairy. The majority of our family members, including our dog, love Goldfish crackers and pretty much every other type of cracker and/or cheese. But the explanation in the book made a lot of sense and Elliott had an acute sensitivity to casein, a milk protein, when he was a baby, so I thought, what the hell? Let's do this. So I went to the natural foods store and I bought a bunch of weird stuff (spaghetti noodles made of rice and corn, fake oatmeal, etc.) and Elliott has been on this diet for four days now. He pretty much hates it overall, but he did eat his lunch today and most of his snacks, so that is progress.

But here's the amazing news...I think it is working.

I got home from work around 2:40 this afternoon. Elliott was finishing up his snack when he started fussing. He then stopped fussing, looked at me, and said, "Juice please." He has NEVER asked me for anything before. I cheered for him and made him some juice and he watched me patiently prepare it. By now he would have been screaming usually.

Wait, it gets better.

So then Ben was putting stickers on my arm, 5 of them. Elliott walks over and says, "one, two, three, four, five" while pointing at the stickers. I am not exaggerating. He did it like three more times. Now, he has counted to 3 before, but never in reference to a number of objects.

THEN Ben went hiding and I asked Elliott to find him. He found him and they both laughed.

THEN Ben started dancing. I said, "Elliott, can you dance, too?" and he did it. He started dancing.

All of the above happened in about 20 minutes from when I walked through the door. Maybe these seem like normal things, but for us, this is HUGE progress, progress we haven't seen in months, compressed into a small portion of one day. He kissed me today. He hugged me today. He barely got upset about anything. He looked into my eyes several times. He connected with me, I could feel it. And it felt amazing.

We see the neurologist on Thursday, so we'll see what he says. And I don't want to get too excited. But we are definitely keeping him on this diet to see what will happen next. And in the meantime, I cautiously exhale a sigh I've been holding for a really long time.

Friday, April 17, 2009

reality sets in...

The shadow of autism has haunted our family since Benjamin was very young, courtesy of his speech delay, obsession with routine, and unusual attachment to the letters of the alphabet. I worried about Ben, yes, but no matter what they said, I never really believed it was autism. Because a large percentage of his relatives have obsessive compulsive disorder, I recognized and understood his behavior and I somehow always knew he would be okay. And he is. His speech is almost caught up and he is already learning to read. He has tons of friends at school and he expresses emotions readily (sometimes too readily).

And then we had Elliott. And he too had a speech delay. But even before that, as an infant, he never really wanted to cuddle with me. When he cried, my touch was less a comfort than an irritant. He literally never really hugged me until he was nearly 1 and a half years old. Okay. He wasn't cuddly. But then he wouldn't talk. He acted as though he were deaf and he made poor eye contact. He doesn't get the relationships between things or understand that language is a communication tool. He started to learn words, many of them actually, and then he stopped. Now, pretty much all he does is pretend to shush someone or pretend to sneeze or pretend to cough, empty immitations. Sometimes he waves good bye. He used to blow kisses, but rarely does that anymore. He tantrums uncontrollably and nothing I can do makes him feel better. That's the worst part, the part that makes me feel the most helpless. Mothers are supposed to comfort their children, and I am useless.

I have spent the past several months in denial. He shows affection sometimes. He makes eye contact sometimes. Maybe it's all just one big hearing problem.

Yesterday the woman than works on him with his language development told me she is fairly sure he has autism. I trust her the most because she's the specialist who spends the most time with him. When SHE finally said what she's been hinting at for the past few months, I felt something break inside of me. And now I know. I just know that if he doesn't have full-blown autism, he has some other spectrum disorder. And so I tried not to cry in front of her. And I have been trying to keep it together all yesterday and all of today. At work, I am telling a student why his thesis needs restructuring and autism autism autism is running through my brain. Suddenly the shadow is a real thing, a monster lurking. Suddenly, I believe in it.

He sees a neurologist and a developmental specialist in the next two weeks. His audiology appointment (the 7th one?) is next month.

The worst part about all of this is that autism is this amorphous, confusing diagnosis and based on all of my research it seems like no one really has it figured out, though there are lots of treatments you can try. I am a person who wants to fix things, to control them. And this is way beyond me.

I want Elliott to be happy and healthy. I want him to have everything. I want to get inside of his brain and make everything connect the way that it should. He is this sweet and beautiful boy and he doesn't deserve this and I feel as though I have done something wrong, that this is partly my fault.

Monday, April 06, 2009

chapter 1 of ben's tell-all memoir of his childhood

We got puppies this weekend. We originally wanted one, but because the puppies were rescued from a terrible home in which one of them almost died, the woman we adopted them from wanted to keep them together. And they were so freaking cute (see below). And so sweet. But then we started to read stuff about what a bad idea it is to get two puppies at the same time. Especially from the same litter. ESPECIALLY of the same sex. ESPECIALLY if you have small children. The family who rescued the puppies told us if it didn't work out, they would take them back, so after a lot of anxiety and hard thinking, we called the family we adopted from and told them we could either keep one of them or neither one. This seems to be the kindest, most understanding family, and they decided to take them both back.

Ok. Great. But now I had to tell Ben that Martin and Lewis (Ryan had a hand in the naming) were going away. He cried, "But I wanted to love them forever and ever" and "I don't want another dog" and "BUT I LOVE THEM."

He was so earnest and sad and I felt like the worst person ever.

Saturday, April 04, 2009

Friday, April 03, 2009

two little friends

We are still so worried about Elliott, but after a severely frustrating day yesterday, one of the many days during which he screams and throws things all over the house, often containers filled with sticky fluids that I will have to scrub from our floors and couches, he had an amazing day today. He was happy and calm and loving and he really is such a beautiful, BETTER THAN NORMAL-LOOKING boy when his face isn't twisted up in fury. And best of all, he and Ben played outside together for a really long time this afternoon. They chased each other, slid down the slide, squealed, and laughed, and it was completely their own thing--a secret shared between them, what Sally and David and I had a very long time ago. I thought, this is why I had two of them. So they can have these moments together, something in some ways I am so wholly not a part of. There will be no one else they can complain to about Ryan and me who will understand as well as they do. And I think that is a good thing.

seriously?

After an unfortunate incident whereby I shushed a teenager who was way out of line, an incident which escalated to the point where I was questioned by police, I have sworn to never confront people at the movies, no matter how rude they are. And, oh, it is hard for me. I have to push that temper of mine down so hard.

But really, teens and trashy adults, you make me not want to go to the movies anymore. And I know this topic has been overdiscussed, but it's more than just the talking. A man burped in my hair tonight. And he just didn't give a fuck. He was like, bitch, you are in my living room and I'm going to burp in your hair. Except we weren't in his living room. Ryan and I had just paid over 30 dollars for tickets and candy and popcorn, nearly 40 for dinner and 40 more for the babysitter.

But I kept my mouth shut, and, voila, no incidents involving the police.

That said, the evening was still WAY worth it because we got to hang with Bridget and Eric and get out of the house.

As I put Ben to bed, he said, "Why are you leaving me, mommy? You don't love me any more?" And it would have broken my heart if I hadn't spent every second of today and most of my life proving how much I love those two kids. Sometimes mommy needs a break.

Thursday, March 26, 2009

i wish i had a mac...

This always takes me way longer than it should. Thanks, Windows Movie Maker. In any case, I know I haven't posted in a while, and there are actually some developments.

Elliott is getting tubes reinserted into his ears next week. This time, Ryan is taking him because I was traumatized last time. This boy HATES the doctor. He doesn't like monitors attached to him, or strangers in his face, and he isn't afraid to let everyone know it. Elliott is starting to learn sign language and he's talking a little bit more, but we really don't know what the status of his hearing is. We've had about six hearing exams, but they've all been inconclusive, mostly because he will not sit still for any number of minutes. We are worried about this, but he's making progress so we'll just keep working with him to figure it out. This week: hair cut. Next week: surgery. He's got a full schedule ahead of him.

Benjamin is currently into "girl" toys. He has a Hello Kitty watch, a collection of Littlest Pet Shop animals, and a heart ring that he tells me is "beautiful." Today, I bought him a baby doll that comes with accessories (a cell phone, a bottle, a diaper) that fit into a flowery backpack. He proudly marched into Kid's Club at the Y and told everyone, "this is my baby back pack. Girls or boys can play with it." He gets strange looks here, but whatever, dude. If he's okay with it, I am. I'd rather he play with dolls than want to punch everyone in the face like most of the boys at the Y.

Here's a video of these amazing boys:

Monday, March 16, 2009

Sunday, March 15, 2009

mohop

I want these shoes. I want them with all of my heart.
http://www.mohop.com/gallery/gallery02.htm

Saturday, March 07, 2009

Wednesday, March 04, 2009

shameless self promotion

A profile I wrote a few years ago will be included in this anthology, due out this spring. It is about a gay karaoke club in the Bay Ridge area of Brooklyn, where Saturday Night Fever was filmed. I am very excited!! Buy it. I promise, it will really be worth your money.

Monday, March 02, 2009

february/march 2009

Elliott turned two yesterday. And he was quite the host. He quickly became overwhelmed and went to sleep as the party continued without him. Benjamin's mood deteriorated throughout the day until I carried him up to his room screaming and he fell asleep almost immediately. The night before, he'd attended a banquet with me, sitting at a table during speeches for nearly 3 hours, which I thought was impressive. On Elliott's birthday, he was pushed to his limits--too many friends and too much sugar. It was a beautiful day, though, and we had a lot of fun.

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