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.

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.

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.

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.

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.

ben graduates!!

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.

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.

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.

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.

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...

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.

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...

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. :)

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.

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.

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.