Well, since I seem to have conveyed all my anxiety well enough to pass it on to everyone else, I feel like I should write a quick post to say that the first two days have seemed to go ok. It's hard to really evaluate, since all my information is coming from this young man of little words. He was already deep into a Disney movie by the time I got home Monday (The Sword in the Stone), and wasn't really psyched about telling me about his day.

I mostly asked him a lot of poorly-constructed questions, so that he just kept answering "yes". (Did you eat your lunch in the cafeteria? Did your teacher eat with you?) When I asked about recess, he responded "I didn't go down the slide." I can only infer that someone wanted him to go down the slide, but he refused. Or he actually did go down the slide, but doesn't want to talk to me about it...

He brought home a "madlib" worksheet he had done at school. Each page had an incomplete sentence- he had to cut out a word to fit in the blank, such as "I come to school in a ____" and he had cut and glued the word and picture for "bus". One page read "My teacher is a real ____." Henry had filled in the blank with "sweetheart". I asked him what some of the other choices were. He looked up at me with an impish smile and said "monster"! So I'm glad he didn't choose that response.

I wrote a note to his teachers yesterday, asking for guidance on Henry's birthday treat next week. They don't do daily communication notebooks at this school. But maybe I'll just force my own by writing them a note every day.

Yesterday evening, when I asked about school, he said "I went to art!" Henry's never been much into art- too challenging to his fine motor skills- so I was happy to hear his excitement. I asked what they did in art and he said "I made a dragonfly!"

This morning he started saying that he didn't want to go to (the new school), he wanted to go back to (the old school). I told him that I know it's hard to start something new and that it would take some time to get used to (the new school). I decided not to push it, and declared that by Halloween he would really like his new school. (Hopefully it happens before then, but I thought that time frame might give him the idea that it would be soon, but not right away.)

Thank you everyone for your support, and I'm sorry for all the nervousness spilling all over the place. As you know, the new school decision has been a stressful one. Of course all parents worry about their children. But our autistic children ratchet that up a level or two. It was very comfortable to have Henry at L's house this summer- a comfortable safe zone where he could also spend time with his brother. But I was caught offguard a couple different times when I realized that L couldn't understand things Henry was saying to her. She has known him his whole life, and spent the most time with him of anyone, outside our immediate home. She loves him like he's her own child. And she still doesn't know what he's telling her half the time. Really eye-opening. And really frightening, if you think about it too much: there are only 4 people in this world who understand everything Henry says.

How am I supposed to send him out in the world, knowing that?

It doesn't help that I've been reading a lot of news stories that I shouldn't. I read about bad things that happen to children, as if I think that reading about them will prevent them from happening to my kids. And then the details get stuck in my head and shake loose in the middle of the night.

This cloud will blow past- don't worry. By the time we get through this fun-filled long weekend and celebrate Henry's 9th birthday Monday, I will be all sunshine and daisies again.

Just keep swimming, just keep swimming... maybe we should all get Dory tattoos (or t-shirts, for the needle-phobes.)

the circle of life

Could I be any more cliche than this? Henry watched The Lion King a couple times this weekend and took 2 different Lion King books with him to his first day at the new school, so I just can't avoid using the circle of life phrase.

Henry has been feeling a lot of anxiety about this change to a different school. But the good news is that he's been expressing that verbally without too much other acting out. This morning he told me he didn't feel too well. And that he was nervous about going to a new school.

Of course I understand how he feels. How nervous do any of us feel when we start something new? He's not quite 9 years old and loves his routine- gulp. I can't let myself get too far inside his head or I'll be trying to smuggle him in to work with me and "office-school" him to never let him out of my sight!

So I tried very hard to remember that a mom's job is to say "I understand how you feel. It's normal to be worried about something new. But you'll be fine. Everything will be great. I think you'll love your new school!"

I remembered that a new infant was starting today at L's house, and I thought about how his parents must feel- leaving their baby for the first time.

I told Henry to think about how scared that baby might feel, but that we knew he would have so much fun at L's house and soon he would love it there.

There was a little mix-up with the bus, so we had some extra time to snap photos while waiting. It finally arrived, although it stopped about half a block from where I had been told...

Henry sat down across from a chatty 5th-grade girl. She introduced herself and asked us our names. Henry pointed to her Camp Rock binder and said "Camp Rock".
"I have a Camp Rock binder, Camp Rock notebook, Camp Rock folders, and Camp Rock pencils", she replied.
"Wow" I said.
"I'm a big fan" she explained. Then she offered to help Henry find his classroom.
This feels as hard as every other first.

you are the consequence!

Let's just all put our heads down and try to make it through the next few weeks, ok? It seems like families all over the blogosphere are worried about the new school year starting, and over here is no exception. Henry's been talking a lot about missing his old school, missing L when he goes back to school, missing me and daddy, missing Kate.

This is one of his ways of expressing his anxiety. I don't know that he will actually miss any of these things, but it's a phrase he's found that conveys hey, I need some comforting. In reading back through some of my early posts, I remember that he used to miss things much more regularly. And back then he had all his pronouns backwards. So we have traveled from that point to this: where we have just occasional anxiety, with the correct pronouns. But the worry for the mom feels the same.

And the worry spills over to Thomas. He is not starting school yet- has one more safe year at L's house before the big changes start. But a couple of his buddies from L's are going on to kindergarten, and she is taking in 2 new infants. Tommy will be the big boy that the little ones emulate. Time marches on and on.

In a lighter vein, here is how my sons looked when we left the house this morning.

Longtime readers may remember that Thomas used to be positively traumatized when required to wear long pants in the winter. Well, all of a sudden, the past few weeks, he has been digging through drawers to find long pants and long-sleeved shirts to wear. And a long-sleeved shirt with a short-sleeved over it is even better. He thought he looked totally fashion today- down to the sunglasses.

For his part, Henry has taken to sleeping with no shirt (I guess he learned that from Daddy). He often sleeps in boxer shorts and then requests to just wear those for his underwear that day. Well, today he said "I want to keep my jammie pants on under my shorts." Only he was wearing long pants this time. Don't worry, I brought proper changes of clothes for both of them, in case L takes them out in public today.

Yesterday was a rough one for both boys. I was just thinking that we had almost made it through the summer without incident (remember Thomas' black eye last August?), but no such luck. L called yesterday to tell me that Tommy had been stung 4 times (by a wasp or hornet, we think, as bees can only sting once) on the back of his knee! Of course I had a heart attack, worrying that he would be allergic, but he was perfectly fine after she put some baking soda paste on the stings.

Henry's pain yesterday was of a different sort: the sting of shame, perhaps. At our last visit to the library (Monday), I borrowed an X-Men "junior novel"- a chapter book with no pictures except for a few pages in the center, with photos from the movie. Although Henry is a very good reader, he prefers large storybook-type books with lots of pictures. I was hoping to force his comfort zone by having him read this chapter book.

When I called him up for a bath Tuesday night, he had, clutched in his hands, the photo pages from the library book. Torn right out. I couldn't believe it. Henry has never ever damaged a book- library or otherwise. I guess I took it for granted that he understood that you aren't supposed to damage books. But maybe he just was never motivated to do so before.

Heavy sigh. So when I picked him up yesterday, I told him that we were going to go back to the library, return the damaged book, and tell the librarian he was sorry. Henry did not like this plan at all. He argued a bit and said he didn't want to go. I replied by saying that this was the consequence for damaging the library book.

He came over, pushed me right about my rib cage, and said "you are the consequence!"

You almost feel sorry for the kid because you can tell he wants to really tell me off, but he just doesn't have the language. He did a lot of crossing his arms, planting his feet, and saying "hmph!" on the way to talk to the librarian. He looked like he was going to cry and only managed a "sorry", while looking down. But that was enough. I feel like the point was made- I hope he learned a lesson. (Oh, and the librarians are super-nice and know him and I had called beforehand and talked to them, so they were very kind to Henry.)

The book only cost $5, so I am going to make him do a few jobs to earn the money. (In fact, I bribed him to pose for the photo above by telling him he could earn $1. Note his unhappy face.) On the way out of the library I stopped to give Henry a hug and asked if he felt embarrassed. He said yes. It's so hard to help him understand his emotions without putting words in his mouth. Oh, he also attempted to convey his anger toward me by declaring "you are not my mom!" I just brushed that off and said "of course I am." Luckiest mom in the world, even on a day like this!

autism resource

I received an e-mail from Easter Seals today with an interesting link:

Information on Autism Services in Your State Now Available

Easter Seals and the Autism Society of America have prepared a state-of-the-state report of autism services in the 50 states, the District of Columbia and Puerto Rico. The profiles highlight the number of children with autism, private health insurance coverage for autism, and other state-led resources. This information will be regularly updated throughout the year.
View your state's autism profile at http://www.easterseals.com/autismprofiles.
This information may already be out there, but I've personally never found such a simple resource to see even information about my own state, much less the rest of the country...

Tonight we have "meet-the-teacher night" at Henry's new school. Now, before you get all excited and think that I kicked some school district butt to get him in, let me explain.

It turns out that, if you can't get your school district to agree to send your child to the private school, (I couldn't, not without calling an IEP meeting which couldn't be done until after school had already started) you can send him to the "community school" (called charter schools in most other states) arm of the same school. (If there is a community school slot available, and if the spot is offered to you.) You withdraw your child from the district of residence and enroll him in the community school.

Holy shit, this stuff is unclear. One person tells you one thing and the next person doesn't know anything about that, and you send an e-mail and leave 15 messages and wait a week to figure out what to do next. I feel like I've been through the wringer.

It doesn't help that my husband is still not drinking that kool-aid, while I'm guzzling it by the gallon. At least he's willing to give it a shot, seeing as I'm so flipping sure about this.

I'll agree with him that the place has a bit of a cult-like feel to it. Everyone is so friendly and smiling and talks in such soothing tones. But I like to think that that's because they work with autistic kids all day, and friendly, smiling and soothing are good ways to be in that environment--not because they're trying to brainwash us.

Our school district's refusal to agree to place Henry here just reinforces my feeling that they don't really care about my child. And their argument that mainstreaming in the public school prepares my child for the "real world" he will someday work and live in holds no merit with me. You know what will prepare my child for the future? Being in a safe, nurturing, understanding, respectful environment that works on his weaknesses and works with his strengths to give him an excellent education.

The "real world" can be a pretty shitty place, and I don't see any other parents going out of their way to prepare their kids for that. Why should I be expected to?

I think Bill summed it up pretty well with this analogy: a couple summers ago Henry played t-ball through our city's parks & rec dept. We told them up front that he had autism, and they were quite willing to work with him and include him. And it was fine- it was a decent experience. But then this summer we found the Miracle League. They did more than just let my kid play. The team was made for kids like him, and parents like us, and it was more than we could have hoped for. This is my hope for our new school.

I've realized that part of this is selfish. I went to a parent orientation meeting the other night, and had the most unusual feeling as I pulled into the parking lot full of cars with autism ribbons on their bumpers. The feeling grew as I looked around the room and saw parents nodding and smiling at the school founders who were speaking. I think this feeling that I'm not so used to is belonging. As Drama Mama would say, these are our people.

Just as my son will no longer be relegated to a room at the end of the hall, I will no longer be relegated to the edges of the parental realm. I would not have participated in the PTO at his old school, because he didn't really participate in the school's activities. This new school requires a lot more parental involvement, and I think that will be good for me- for all of us.

I was telling a friend about the baseball analogy- a friend who's son is 10 and plays select-league baseball. I said "yeah, maybe Miracle League isn't 'real world' baseball, but I don't care." She interrupted me and said "Or maybe Miracle League baseball is 'real world' baseball. Just as much as our league is. It's about giving everyone a chance to play."

issues

I would really rather not give everyone the impression that I'm totally neurotic and frantic about my children leaving me at any moment. I kind of thought that I was over that stuff I wrote about in the last post. But then this morning I had a bad dream:

Tommy was leaving. Going somewhere on his own. I'm not clear on the exact circumstances- if Bill and I were divorced and the boy was going off to visit his dad, or maybe he was just going off on a trip by himself. But he was standing out on a street corner in his yellow crocs and blue spiderman t-shirt- not any older or bigger than he is now- waiting for a taxi to pick him up.

I was watching him through a window, trying to be cool, but then just lost it and ran out to him, crying, and begged him to come back home and stay with me for awhile. I was on my knees, hugging him and sobbing, and he was like "ummm, I don't know mommy. Actually, I think I'll go."

Is that messed up or what? I am getting all choked up again, just thinking about it.

It's going to be a long 14 more years for this kid, what with trying to live his life while his mom drags along behind him, holding on to his ankles.

step out of it mommy (Tommization of "snap out of it")

Last night, driving home after work, I guess I was slipping into a little melancholy. I was thinking about all the ways our children leave us. Some leave because it's time, and some leave before it's time. But most of them do leave.

I've been reading and re-reading posts on the blogs linked above all week. And I wonder why I, a person who eschews watching any sad movie or reading any sad book, seems to want to torment myself with these stories?

So I was pondering these things and maybe getting a little long-in-the-face, when I heard a little voice from the backseat:

"...his son, Chico..."

"...his son, Fabio..."

"...love a duck!"

"LOVE A DUCK!"

My sons were throwing out all my favorite funny lines from Finding Nemo. Were they trying to cheer me up? To tell me to appreciate what I have in my own back seat? I think so. It worked.