No Matter What

Okay. Okay. Okay. I've said the word, "Okay," about six hundred times this morning. It's almost as though I've had to force myself to agree. I think that maybe if I say "Okay" enough times, it will somehow become okay. I feel like the boy that's "whistling in the dark" past the graveyard to keep his spirits up.

It's one thing to know, roughly, what's going on with my kid. It's another to have a seventeen page document detailing what's going on with my kid, plus ANOTHER eighteen page long document full of recommended interventions.

"Overwhelmed" understates, significantly, what I'm feeling right now.

There are two different types of diagnosis for Autism, which was confusing as hell to me when I began this whole process. Now, it seems very simple. I like to compare it to buying shoes.

First, there's the lumpy and uncomfortable Faded Glory (Wal-Mart) version. It costs around $325. and consists of taking the child to a developmental pediatrician. This person will watch the child for half hour, or so, and then say, "Yup. You've got an Autistic kid. I'll write that down on a sheet of paper for you. Good luck and have a nice day."

Then, there's the unmistakable Prada version. It costs thousands of dollars more than the Faded Glory version, and consists of taking the child to a licensed (it's important to check for the license) clinical psychologist. This person will run every test known to man-kind and then give you a document that tells you, in excruciating detail, more information than anyone should ever know about anyone. This, of course, is the one you need if you actually expect to be able to help your child.

We've just received the Prada version. And I have to admit, it doesn't FEEL nearly as good as a pair of Prada shoes would feel on my feet right now. It's going to take me a while to read and understand everything the report says. So, it's sort of hard for me to report the findings here. But, I'm going to try.

Basically, Isabel's two biggest problems are her language delays (both receptive and expressive) AND her "inhibitory control difficulties." These problems are seriously inhibiting her current development. She is performing below age level across all pre-academic subjects. Her over all I.Q. is slightly below normal range, however, her language delays are keeping her from being able to demonstrate her true capabilities.

Intensive speech therapy (if we can find a way to pay for it) will address her language delays. Speech therapy is a must and, apparently, the speech therapy she's receiving at school is NOT nearly intensive enough for her. We have to pray, hard, that she'll be able to get speech therapy through DDD.

The "inhibitory control difficulties" are mainly to do with the Autism. If I'm understanding it correctly, Isabel has some structural abnormalities in the frontal lobes of her brain. Because of this, she will always struggle with being able to control her emotions and her behavior. She will probably always be impulsive, have attention difficulties, have anxiety and other strong emotional reactivity, and struggle to learn and implement appropriate social behavior. She would benefit from psycho-therapy and (God forbid) may need medication to be able to get through school.

This is where I cried, right there in front of the neuro-psychologist. I wanted to say, "You means she's ALWAYS going to have this anxiety? You can't fix that?" But, I didn't because I think, deep down, I already knew that.

I just have to wonder if it's my fault. A mother always wonders if it's her fault. Structural differences in the brain? That means that something interfered with brain development, which happens in the womb.

There was that one time I got the flu when I was eight months pregnant with her. I took a spoonful of baking soda to calm my stomach and this dehydrated me so badly that I ended up in the hospital. Remember that? By the time I got to the hospital, the amniotic fluid around Isabel was almost completely gone and I almost went into labor. They pumped me full of water again and kept me over night. By the next day, everything was okay. Supposedly.

I've read that Autism might be caused by viruses contracted during pregnancy, by diet, by various toxins, by vaccines. There's all kinds of theories. But, I've also read that Autism is genetic and that it has to come from both sides (mother AND father). We both have Autism in our families. Shane has a lot of it on his side. And, I really think my brother has high-functioning Autism. Considering that I have two Autistic kids, the 'genetic' explanation makes the most sense to me so far.

I remember having an ultra-sound when I was first pregnant with Isabel. I was about twelve weeks along, so she was about the size of the end of my thumb. The ultra-sound took about twenty minutes and during the entire time she was on the monitor, she was jumping up and down. It was the same exact jump every time. Up and down. Up and down. Up and down...for the entire twenty minutes.

It was the most peculiar thing I'd ever seen and I asked the ultra-sound lady if it was normal for a fetus to jump up and down like that. She didn't really answer me. Isabel still, to this day, jumps up and down. When I'm getting her dressed, I have to be careful she doesn't hit me in the chin. She just jumps, suddenly, for no apparent reason! I've had a black and blue chin countless times from this. Do you suppose she could've been Autistic already at twelve weeks?

You know? A person could drown in these questions. It's like anything else. The more times you ask the question, the more different opinions you get. And the more opinions you get, the less the information seems to make sense. The bottom line is that they really don't have a freakin' clue why kids are Autistic. They just are.

We took Alden, Isabel, and Cale to the birthday party of one of Alden's friends at the park this afternoon. The moment we walked up, someone looked at Cale and said, "Hi!" so, he screamed this blood curdling, high pitched, long lasting scream. Everyone cringed. I kind of wanted to say, "Well, here we are! You know we've arrived when the screaming begins," but, I refrained. I want so badly for Alden to have a somewhat normal child hood. We won't be able to avoid birthday parties.

Shane took Cale and played at the play ground while the rest of us participated in the birthday party. Isabel cried and whined during each and every party game because she didn't understand how to play. She cried after every single game she didn't win. And, she cried every time she didn't get a prize. She didn't want to pop the balloons or hit the pinata, choosing instead to sit on my lap and cry. Then, she cried and whined because she didn't have presents to open, because she couldn't eat the cake, and because, well, it all just kind of sucked for her.

And, it looks like that's just what Isabel's life is going to be like.

This, for me, is powerlessness at it's highest level. I'll never be able to make the world okay for her. All I can do is sift through this report and try to understand everything. Then, try to pick a few of these recommended interventions and get them for her somehow. It's one foot in front of the other. One thing at a time. I have to trust that God loves Isabel as much as I do. All I can do is the footwork, leaving the final results up to him.

Maybe she'll be miserable for the rest of her life. Maybe, one day, I'll be able to teach her that she doesn't have to be miserable, EVER, no matter what's going on. What an absolute gift that would be, huh? And maybe, I'll get to tell her that it was HER that taught ME that. She's a beautiful child, my Isabel. And, it's gonna be okay.