From my other journal, dated July 18, 2002

There are some days when I'm absolutely sure I'd like to die. I think about it, I plot it, I obsess over what I could do that might leave the least mess and be the least upsetting for my family, then in the end I think about what might happen to my children and lose the courage to do anything. Larry could certainly raise them without me but who will be here with them while he works?

I'd rather not leave that to chance.

So I go on, even on days like this, when all I want to do is exit gracefully and quietly.

Larry and I are disgusted with the people that did Trent's evaluation. I was upset before but I had no idea how nightmarish the meeting was for my sweetie until he got home this evening. They gave him their findings, and as he was trying to explain that some of the things they saw weren't characteristic of Trent's behavior the head psych tells Larry in a very condescending tone, "Most parents have a hard time accepting the truth."

Excuse me?

Let's go down the list of autism warning signs.

Q: Does he stare blankly off into space for minutes at a time?

A: NO.

Q: Does he have a hard time indicating what he wants?

A: NO. (He uses sign language or takes our hands to lead us to what he wants.)

Q: Does he stomp, bang his fists, bang his head?

A: NO.

Q: Is he non-affectionate?

A: GOD NO. (He's actually very snuggly and lovey.)

Q: Is he hyper?

A: NO. He's busy but not hyper.

Q: Does he seem to not understand simple suggestions or commands?

A: NO. Sometimes he chooses to ignore us, but he definitely complies enough to show that he understands what is said to him.

Some autistic behaviors don't appear until the age of three or four, so we do have to watch him over the next two years. That in itself is agony because every little thing he does will be cause for concern. The way we look at our child has changed. He's still the same baby and we love him the same, but both of us had times when we looked at him today and said, "No way he's disabled," then awhile later wondered if he could be. The worry and question have been put there now and we both despise the psychs who planted it.

They were really smug with Larry, treated him as if he was in denial as he tried to explain that what they saw in the 45 minutes they taped his behavior is quite different from what we see at home. Trent was in a strange place with strange people.

He has no trouble interacting with us at home.

He has no trouble making eye contact at home.

He has no trouble focusing on what he's doing at home.

They got a fair idea of what he does but they didn't see everything.

Now they want to arrange more meetings to decide where to go from here based on one 45 minute evaluation period.

Well they can go get fucked. We're taking Trent to someone else. It wouldn't be fair to him to take what these people tell us at face value, we're going to get a second opinion. Then we'll arrange a meeting and decide what to do. My brother had these same types of problems when he was little and my poor mother was dragged through a figurative knothole trying to get him from doctor to doctor, test to test, evaluation to evaluation. In the end it was our new pediatrician who told her he didn't have a disability, he showed no signs of any type of learning disorder. What he had was a slight learning lag. What she needed to do was be extra attentive when it came time to do his homework and make sure he got his assignments finished on time, and eventually he was expected to outgrow the lag.

He did. He's perfectly normal.

Well, as normal as a member of my family can be, anyway.

The thing that's really difficult is, that while we are in the process of trying to accept that he may have a learning disability (no one will ever know how much it hurts to say that), our guts are telling us he's okay. He was a preemie, after all. Preemies need to finish their development post-delivery so the first few weeks of their life they develop as if they were still in the womb. Hence the need to catch up later. Preemies are known for this, especially boys who develop more slowly than girls anyway.

We aren't in denial. We know our child.

This is the kid who has managed to trip just about every child safety device we have in the house.

He has already learned how to escape from the playpen (and that's pretty disturbing to me because I'm a private bathroom person - at least I used to be).

He figured out how to get by the doorknob guards in less than ten minutes.

He had the potty lock picked in three.

He has learned how to slide the bolt on the gate to the kitchen and bedroom. The only thing stopping him from taking down the gate is that he lacks the strength and manual dexterity to lift the bar. So he tries to climb over them. Within a few days he'll be able to.

We are so angry.

First the psychs told us they needed to get their information together. Now they're telling us he is probably disabled, all the signs are there but they're not sure. So basically they've had the speech therapist coming since February, have had us fill out paperwork ad infi-fucking-nitum, asked us questions for more paperwork via phone and done in-home and in-facility evaluations, yet they can't come to any conclusions.

Golly, but that work sure was useful.

Boy howdy.

All they can tell us with all of their bullshit is that they think he's borderline but we need more testing to be done. It feels as if we have wasted major time and effort. Their cautious bullshit is maddening. They need to have a certain number of kids involved in the programs or the state pulls their funding since all of this is being done through the health dept. So they keep stringing people along, all the while protecting their funding and making sure we can't come after them later for libel by not really committing to a diagnosis.

It's making us both insane. If he has a disability he'll need special care so we should know this right now.

Now I know what it felt like to be my mother, and in more ways than one, since Trent followed in my brother's footsteps by taking off his diaper this morning and smearing poop all over my living room.

I've been on the verge of tears all day long. I keep trying not to cry because I don't want to freak the kids out, especilly John who will no doubt have questions if he sees it.

I had finally gotten out this week, several times actually, and was feeling really good. Now this. It feels as if I'm not really allowed to enjoy anything.

My mom volunteered to watch my babies so Larry and I can get out tonight, but when we talked about it this evening neither one of us seemed to be into it. I don't know if we're still going or not.

My niece's christening is on Sunday and my brother told my mom he wants us to come to it but he hasn't said anything to me, so I don't know about that either. I want to take John to see Eight Legged Freaks on Sunday morning but I guess we can go later if Patrick calls. I have the feeling he'll forget, which is okay (he's always so busy and sometimes it takes him several days to return a phone call). I don't much feel like going anyway. I don't feel much like doing anything at all.

Nothing seems good today. I'm so confused and upset.

What will the rest of Trent's life be like?

Why do I feel as if a mistake has been made and that we aren't in denial, they're just incredibly wrong?

What if I'm wrong?

My head hurts.

I feel like going to bed and not getting out of it any more.