Dad's day at school

Jeff went to school with Moe on Friday to observe the class. Parents are encouraged to come and observe/participate once or twice a month, but it has been hard for me to do because of Jelly Belly. The last time I went, Moe was only a couple weeks into the program.

Jeff had a number of interesting observations, but the primary one is that Moe probably doesn't belong there. Moe does great when he is getting one on one attention at the center but as soon as a larger group is required, he shuts down and tunes out, looking out the window or staring at the lights. The student/teacher ration at the school is 2:1, which is fantastic, but may not be enough for Moe right now.

At one point, Moe was in the fine motor skills room and Jeff noticed that he was looking at an alphabet puzzle. Moe put all the pieces back in the puzzle (with a little help), but he could say all of the letters, including ones we hadn't heard him say before, like X and Z. The staff got a kick out of this, but they may not have seen this if Jeff hadn't pointed it out.

That's not to say the program has been detrimental in any way, but it probably isn't right for him. Jeff spent a lot of time talking to the director of the program and she agrees. This has been the most frustrating part so far. It has been hard to know what is the right thing, and it is hard to be patient with trial and error when valuable time is ticking away.

Meanwhile, we start individual OT on Monday and speech on Thursday.

We also meet with Dr. S on Thursday for the first half of the ADOS-1 assessment, which will eventually lead to a diagnosis. With or without an autism diagnosis, we need to get a very clear and specific recommendation from Dr. S so we can go back to SARC and request another change. We need to know what we should be asking for. And if we can't get the amount of one on one services we need, we'll have to go through insurance and/or pay out of pocket. We will do whatever we need to do.

For posterity, here are some of the things Moe has been up to lately:

• More animal sounds (moo, neigh, woof, elephant, monkey, rooster). Loves the "see and say" toy.
• Lots of "woof" when he sees dogs, real or in books
• Saying words like "ball," "pizza," "bubbles" and "turtle."
• Knows all letters of the alphabet
• Says bye-bye, blowing kisses (occasional)

Windmills

When I first told one of my best friends that Moe likely had autism, she told me a story. Imagine you are planning a trip to Italy, she said. You plan the travel, read the guide books, carefully pack. You even learn some of the language. You are ready. But when you get off the plane, you are in Japan. Japan is lovely. You've always wanted to go to Japan. But it wasn't what you were expecting.

It turns out that this is a variation on what I now know to be a very well known essay about life with special needs kids called "Welcome to Holland." You can read the full text here.

Recently, I saw a similar essay, called "Welcome to Beirut." Click here to read it. Go ahead, I'll wait. Great. This is a much tougher version of events, and in some ways feels more accurate: full of anger, fear, and confusion.

So which is it? Are we on vacation or at war? Did we take a different fork in the road and just need some time to acclimate? Or did we land in the middle of a war we never asked for in the first place? I suspect, it is a little of both. Right now, I think I identify a little bit more with Beirut. I feel valuable time ticking away. I want out! I don't know where to turn, which enemy to battle first.

On the other hand, we're doing pretty well. We've managed our first set of changes with the regional center. The approvals have gone through and we're scheduling the speech and OT. And through all of it, Moe is improving. He is starting to use words. He is engaging more, even if just a little bit. And let's not forget Jelly Belly. She looks at Moe like he is the coolest thing ever! Like a windmill. Or a tulip.

Photo from fhisa. See original photo on flikr.