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...

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.