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.


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


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.


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.