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.

update on the school situation

I am totally drinking the kool-aid on this new school. My husband, not-so-much. And that's good- one more example why it's good to have 2 parents to help make these decisions.

Like, on our tour, when she mentioned that they have early dismissal every Friday? I heard that, but kind of filed it in the back of my mind- we'll figure that out somehow. But Bill was like "what would we do about the Fridays? What if the school district won't pay for it and, even with the Autism Scholarship that our state offers, we still have to pay $8000 a year out-of-pocket?"

Autism moms out there- are you sitting down? Because this will surely shock you: it looks like we will have to fight a little to convince the school district that this is the best thing for Henry. I broached the subject in an e-mail, and the Director of Special Ed wrote back saying (to paraphrase) Henry has made great progress here and I think he will continue to do the same in this community setting where he can spend lots of time in the general ed classroom and remain close to home and can go to school with his brother...

The first time I read the e-mail I was just pissed- she's saying no. A few hours later, I read it again and thought, ok, she is saying positive things about Henry, and I can give her the benefit of the doubt and think that she believes these things and isn't just trying to save money or whatever other political reasons she might have to keep him in the school. The bottom line is that most administrators probably only know the kid on paper. They talk about him once a year at the IEP meeting, and then everything is carefully crafted to be positive. Remember the school psychologist who observed Henry? He didn't happen to observe any disruptive behavior, basically thought the kid was cute as a button and a little renaissance man. Yes, those words can describe my child. But he also has defecits- lots of them. I am his mom and it may sound odd to hear me talking like this. But if no one else will, I have to.

I have been drafting a response that would involve calculating how many days this year I got a note home saying that Henry had hurt someone, and how many times that resulted in him missing out on "the general ed classroom" that day, or even a special activity.

But yesterday I got a big boost: I had e-mailed Henry's classroom teacher, asking her to call me. We decided that she is really the only one who knows the school Henry- day in and day out. (I should have e-mailed her a week ago, but at first thought that might be odd- like asking your current boss about a new job you're interested in.)

In brief, (this is already NOT brief) Mrs. C totally agreed with me. She offered to call around and ask some of her colleagues for any inside scoop on the school, but concurred with all my reasons for thinking this was a good move for Henry. As I suspected, she was basically alone in trying to manage the kids in her classroom, and agreed that a whole school full of people who get it would be preferable. She also pointed out that special areas like art and music would be more accessible to Henry, as the ones in the regular elementary school are sometimes too involved or complex for her kids to participate in.

And then, the kicker: she is actually moving, and won't be back to teach this school year. And when she called to tell her supervisor about this, she was told that her supervisor is no longer working for the county. This type of inconsistency is one more reason I am looking at the private school. Yes, they may still have a high teacher turnover, but the program is more likely to remain consistent.

Mrs. C also offered to talk to the Director of Special Ed about Henry, and I have also received some ammunition from a certain fiery Cuban autism teacher I know, which will help me in my rebuttal. I'm not good with confrontation, especially confronting authority. But I can learn to do it for my kid.

My 20th high school reunion is this weekend. Yesterday I looked through a bunch of old pictures, scanned them, e-mailed them to some friends, and laughed and laughed and laughed. I am looking forward to more laughter this weekend. It seems like I am really thirsty for it lately.

why can't real life be more like preschool?

Me: Oh, man, tomorrow I have to go back to work.

Thomas: Mommy, do you have to work the WHOLE TIME while you're at work? Do you get breaks?

Me: Oh, yes, we get breaks. (If you only knew how many breaks I take to talk or read blogs...)

Thomas: Do you have snack?

Me: Well, yes, we do have snack breaks. (If you only knew...)

Thomas: Whose turn is it to bring snack next? Yours or Karen's?

loss

Sometimes I think this internet community is more real to me than the very street I live on. We are all reeling from the loss of Evan Kamida, a beautiful boy with special needs who would have been 8 next week. Please visit his mother's blog and her column at Literary Mama to read more about Evan and his family. And please keep them in your thoughts. How can one bear such a loss?

today

I'm a libra, see, and I guess that's why I need to measure everything. Why a vacation has to have both a glass half full and a glass half empty point of view. Why I need to always take the other side of every argument (according to my husband, anyway). And why a day like today has to be remembered not only for the good that happened.

Our interview for the private autism school was very good. As advised, I really tried to listen to my gut throughout. And I got a good vibe. This spring I started a post (but never finished it) about a new private autism school that I visited in my quest for a summer placement for Henry. I was near hysterical by the time the tour ended. You could say my gut didn't like the place.

Because of that experience, my expectations for this more established school were heightened. I was told when we scheduled the interview that they would be getting to know Henry, we would be getting to know the school at this time, and then I would be contacted later on with their decision. But the administrator who met with us told me after about 20 minutes that she thought Henry would be just right for the position available, and she would reserve it for us. (I attribute this not only to my son's charm, but also to this woman's soft heart. She told me that she's only allowed to do a certain number of intake interviews, because she has such a hard time turning anyone away.)

My head is spinning. The place where we interviewed was the high school location (a former athletic club). The elementary school is several miles away, in a former day care center, and we have scheduled a tour there later this week. I mean, I can't just sign my kid up without visiting the school!

If you're interested in knowing more about the school, e-mail me privately. In brief, they have around 300 students in preschool through 12, and actually have some graduates who are remaining to take community college classes. Henry would initially be placed in an "intensive educational and social classroom" with the aim of being quickly integrated with the peer models.

After we briefly discussed Henry's strengths and weaknesses, Dr. M told me that they would be likely to work closely with Henry to determine why he has such a deficit with math, but also would encourage his reading strength "focusing on his interests", to see how far he could take this ability. "Maybe he could help in the library" is another idea she tossed out, which just about made me melt out of my chair.

We stopped over at the elementary location, just to see where it was and to schedule a tour. Things were chaotic, as it was pick-up time for the summer program. But I kind of liked that. I saw lots of affectionate, smiling teachers, smiling kids, smiling parents. Kind of like any other school, but with a bit more oversight. And as we were getting back into the car, a young woman driving by smiled and waved. It was the same teacher I had met at gymnastics, back when I started thinking about this school again. I haven't seen her since, but she remembered us. Seemed like a good sign.

Assuming we don't think of any reason why we shouldn't grab this opportunity, my next step is to contact the special ed director for our district and basically ask her if they will pay for Henry to attend this school. Dr. M thought they might, because she thinks it's actually cheaper for them than the county program he is now placed in. But if they don't, we will have other options.

Now I guess I was riding some kind of uber-autism-mom wave after the interview, and took both boys to Toys R Us. After exhaustive consideration, Thomas picked out a Batmobile. Henry picked out a 101 Dalmations DVD, which we already have. He's been talking about it for weeks, ever since he lost the papers that were in the first copy.

I've been trying to use logic with him, which is, of course, useless. "Henry, I really don't want to spend $20 for a DVD we already have, just so you can get the papers inside."

His response? "It doesn't cost $20."

Um, actually it does.

I'm not usually one to ask for special treatment because my son is autistic. But today I decided to give it a shot. I went up to the customer service counter, explained the situation, and asked if there was any way we could open up a dvd, take out the papers, and they could, like, wrap it back up and still sell it. A manager was called over, who listened politely, but answered in the negative.

So I bought Henry another copy of 101 Dalmations. And now I'm pissed. I'm pissed because if I were Jenny McCarthy and had a million dollars, I would just buy my kid whatever he wanted to satisfy his perseveration.

But, if I were Jenny McCarthy and went on Larry King and talked about how my son loves the papers from inside DVDs, every yahoo in America would pack up their DVD papers and send them to me.

So, that's why today had a little bit of bad in it, but mostly good :-)

And I do have some other ideas about the DVD papers- I can try asking movie rental places or libraries. And if anyone out there would like a copy of 101 Dalmations (minus the ads inside of course), let me know.

vacation

The place we vacation most summers is a house that's been in my husband's family for generations, on a lake in northern Michigan. It's part of a beach club like you see in the movies- where you can get meals at the clubhouse and play bingo at the beach house on Wednesday nights.

For years I've had a love/hate relationship with the place. It's undeniably beautiful and relaxing, and we could never afford a vacation like this if it wasn't a family home. But the beauty and peaceful surroundings come with so much historical and family baggage: the first person up this year didn't put the rugs in the right spots; the person before you didn't leave any gas in the boat; you drank all of someone else's special bottle of gin; and it's the spot where everyone brings their old kitchen utensils to die.

And then there's the social aspects of the "club" that are so awkward to me, even after all these years. All these families know one another, so you can't take a walk to the dock without stopping to introduce yourself and explain whose wife you are. As a borderline anti-social person, all of the small talk is exhausting to me. I think a perfect vacation would be one where I didn't have to talk to ANYONE :-)

As I was taking photos this year, I thought about how many photo albums we have full of pictures on the boat. They always turn out so well- the lighting and scenery is always picture-perfect, and the subjects are always relaxed and happy. So I took many more of those again this year, but also tried to take some of my other favorite vacation things:

These gladiolas are my personal tradition. I believe on my second-ever visit to the cottage my mother-in-law had glads in this vase on this table on the porch. I have no idea whether this was something she usually did, or the first time ever. But it struck me as lovely and I have placed the same flowers in the same vase on the same table ever since. This year I tried them on a different table, but it just wasn't right and I had to move them.

(We also tried sleeping in a different one of the bedrooms this year and I ended up moving us to our traditional bedroom. I guess I may be just as hooked on the tradition here as the rest of the truebloods.)

Here I was trying to capture the beer bottle on the arm of my adirondack chair with the kids swimming with their dad in the background. As Henry said when we waded out to the raft and sat down for a spell, "this is the life."

Not sure why I took this picture- maybe just to capture the space and comfort of the screened-in porch. You can just see the lake in the background to the left.

Another favorite thing about "Michigan" (we always refer to it with just the state name. Probably confusing to the kids) is these rooster dishes.

I can take a glass half-empty/glass half-full approach to describing vacation:

-The weather was cool and cloudy 2 of the first 3 days. We wore the same warm clothes for 48 hours straight./But the boys helped daddy build fires in the fireplace and really loved that.

-Once the weather got nice, but still windy, Bill took both boys out on the sailboat./The boat tipped over at the beginning of Thomas' ride, and although he persevered through the ride, he was quite scared by it and didn't want to try again the rest of the week.

-On Wednesday, I think, the wind even calmed down- perfect for swimming, I thought. I was so proud of how well both boys did in the water. Especially Thomas- diving in and splashing around in the shallow beach water./Until, after a couple hours, he started wailing inconsolably about ITCHING. Turns out you get swimmer's itch from hanging out in the shallow, still water where duck mites can burrow into your skin. Nice.

___

There wasn't a tv in the cottage for years and years, and when one was finally introduced, it caused quite an uproar. The bizarre compromise that our family has reached is that the tv sits, unused and ignored, all week. I guess the kids must think it doesn't work- they never ask to watch it.

Henry was working his guilt mojo on me, though. I think it was the first day there that he said in a mournful voice "I've been taken away from my home." As if we'd kidnapped him or something, rather than taken him on a vacation.

I tried to get him to explain his feelings a little more, and he eventually said he missed his dvds. I wanted to let him watch one right away, but Bill thought Henry was playing me for a softie, and I think he was right.

Wednesday I took Henry with me to the grocery store (mistake #1). I gave in to his repeated requests for the Sword in the Stone dvd (mistake #2). I was even naive enough to say "I'll buy this for you, but you understand that you won't be able to watch it until we are driving back home, on Friday?" (mistake #3)

"I understand mommy. (Sucker!)"

Needless to say, we let him watch the dvd that night. But aside from the one viewing, electronic visual entertainment was not an issue.

We came home Friday night so as not to miss the Miracle League trophy ceremony Saturday morning. We'll definitely be signing up again next year. Tomorrow it's back to work after 2 weeks off :-( I'll try to post after our interview at the private school Tuesday. Thanks for all the thoughtful comments and good thoughts.

just one thing before I go...

We are packing the car to head up to the family house on the lake for a week. But I wanted to pose a question-- I got a call today from the private autism school that I mentioned a few months ago- the one we've been on the waiting list for since Henry was like 4 years old. They would like to "interview" us on Tuesday, the 22nd. So anyone with any suggestions for me, please chime in. Anything I should be sure to ask or sure to look for?

See you in a week--

the most specialest day

Well, Christine, we had a great day yesterday. It was our first day at home this week because my parents had taken the boys home with them after the fireworks on Friday night. Bill and I had a weekend at home alone (very low-key- watching tennis and Harry Potter on tv and Arrested Development on DVD) and then I drove out to their house Monday to visit, spend the night, and we came back Tuesday.

Yesterday we rode bikes to the nearby elementary school playground for a picnic. A bike ride is still a lot more labor-intensive for mom than it should ultimately be. Thomas seems to have an unusual amount of anxiety whenever a car approaches or whenever he is "left alone" while I run back 20 yards to help Henry over a lip of sidewalk. (Henry pedals so slowly that he has no momentum to carry him over little obstacles.) Then, by the time we catch up to Thomas, Henry is so concerned about why Tommy is crying that he keeps asking him about it...

It's encouraging that Henry is so troubled when his brother is sad. It makes me really proud. But when one son has an anxiety attack about something small and then the other son has an anxiety attack about the first son's anxiety attack... it makes for not the most relaxing bike ride. Also, it was very humid yesterday and also, the city is re-paving a couple of the roads between here and there, so mom had to carry the bikes across the muddy ditches in the road. What an adventure!

But the trek was all worthwhile when we arrived, started eating our lunch, and Thomas announced "this is the most special-est day of my whole life!"

Henry had brought some books and papers to look at while we played, but he did ultimately join us on the playground for some playing, which made Thomas and I quite happy. When Henry came running over to join us, Tommy's face lit up and he exclaimed "Henry! What made you decide to play with us?!" I was wondering the same thing, but of course Henry didn't answer.

Our next stop was Henry's choice: the library. We rode over there (just 2 blocks back toward our house) and browsed the books and movies for an hour or so. I noticed signs for a magic show that afternoon but, bad mom that I am, didn't mention it to the kids. I thought it sounded dorky and wasn't sure that either boy would like it.

But, as more and more kids started showing up, I told Thomas about it, and he said he wanted to go. I was all "I'm a stay-at-home mom today. What the hell, we can stay and check it out." Henry sat in the back and looked at his books and movies, while Tommy and I sat on the floor with most of the other kids.

Thomas laughed and applauded and was amazed by the tricks. I was really glad we had stayed. And I realized that events like this help me feel a little more a part of our community. We've lived here for 7 years, but because I work in a different part of town and the kids' sitter is in a different part of town, we don't know a lot of people close to home.

Well, Henry does, from school. But you wouldn't know it. Perfect example from yesterday: Henry finally came down on the floor by us, to see if it was time to go yet. This boy sitting next to me said "Hi Henry", and waved. Henry gave a half-hearted "hi" and turned back to me. I bet Henry knew half the people in that damn room, but he could care less. And here are his mom and his brother, feeling like we don't know anyone. Oh the irony of life with autism.

One sour note about the magic show: the magician would call kids up to assist him. Since Tommy was sitting on my lap, giving off shy body language, I figured he wouldn't get picked to come up, and he didn't. Each child who helped was given a "magic wooden nickel" to take home. At the end of the show the magician made some throw-away joke about how if you put the nickel under your pillow, a dollar will appear in the morning, but be sure to tell your parents first.

Well, when Thomas realized that the show was over and he did not get a magic wooden nickel, the tears started flowing. He was not the only one, either. The magician might want to re-think that section of the show. Like 6 kids got the wooden nickels and then 94 other kids are feeling left out.

Once again, Henry was quite concerned about his brother's sorrow; inquiring about it long after the matter probably would have been forgotten. Henry used one of his favorite comforting phrases and I think it's really something for all of us to remember:

"Sometimes you don't get the wooden nickel."

I really haven't been writing so much, eh?

I am becoming a little too conscious of who is reading this blog and maybe thinking a little too much about who I'm writing for, when I really do better to just spew thoughts out her without so much premeditation.

A public blog can innocently begin as a place to air one's thoughts and find some new friends who share them. But it doesn't remain so...

Ah well. Things are fine and there's not a whole lot to report. I've just begun 2 weeks of vacation, which would normally seem like quite an indulgence, but our babysitter takes 2 weeks off and pleasantly "forces" me to do the same.

We will take our vacation to a northern lake during the second week. This week I will be playing stay-at-home-mom with my boys and am quite looking forward to it. I'm developing a short list of ideas of things to do, but I'm sure we'll have no problem filling the days with bike rides and trips to the pool. At the parade yesterday I was handed a flyer about the local movie theater's children's movie series, as well as a flyer about an evening Vacation Bible School program that the kids seemed excited about. Maybe we will get back to church.

Things have settled down after our flurry of graduation and back-to-back wedding trips. Things are quite easy, actually. I don't have to pack a lunch this summer or write in a notebook. We don't have to do homework. Our only activities are Tommy's t-ball (so painful to watch 3 and 4 year olds "play" t-ball. Thomas really does great, but some of the kids... whew) and Henry's baseball (which was rained out last weekend and no game this weekend because of the holiday.)

I dropped the ball on horseback-riding this summer- just put a call in to Ms. Pam like a week ago, and I'm sure she's way too busy to get back to me. Maybe in the fall we can start up again.

A few notes about Henry:

-He has been taking private swimming lessons at Easter Seals for years, and has made good progress. This summer I signed both boys up for group swimming lessons at the pool. Their babysitter, L, took them, and she has no first-hand knowledge of Henry's swimming ability.

So the first day of class, his teacher has them all get in the water and tells them to float. Henry says "I can't float."

Now, if he said that to me, his dad, or his private swim instructor, we would all reply "yes you can- get in the water and do it." But no one else is going to respond to him that way, and I wouldn't want them to! His first reaction is always the little sweet helpless thing, and unless you blast that away, he's just going to go with it.

So they put him in the same class as Thomas and a bunch of other kids half Henry's age. It was fine- I decided Henry was learning different skills- like how to participate in the class and follow instructions with a group. He enjoyed himself and had no shame, or even awareness, that he was with a bunch of littler kids. I'm sure he just enjoyed it because it was easy!

But a hard question raised for me: no matter what my child knows, if he refuses to share it, or show it off, what good does it do him? In this case, I can hope that if (God forbid) he were in an emergency situation in the water, the skills he knows would kick in and help him survive. How can I know this for sure?! Throw him off the boat on vacation and see what happens??!!

-We're thinking about getting a Wii for his birthday. I've always been kind of down on video games. But last weekend we visited some friends for the evening; their kids are just a bit older than ours. For most of the evening Henry did his usual thing: watched their DVDs inside the house while the rest of us were outside.

I don't like this dynamic, but feel that it's Henry's best way of coping with a new situation and making it fit his comfort zone, so it's what we do. After one movie was over, we all wanted to try out their Wii- partly because we thought it would engage Henry- he has seen it played at L's house.

Henry loved it! He would have loved just watching, but we forced him to play too and he did pretty well.

We have a little less than 2 months 'til his birthday, so I'd better figure out how to get one of these things.

I hope everyone is having a nice holiday weekend. The 4th of July is always the *%&#*^ longest day of the year for me. As soon as the parade is over at 10:45 am Henry starts asking if it's time for the fireworks. Just 11 more hours buddy!

visiting Virginia

This weekend we traveled to Norfolk, Virginia, for Bill's cousin's wedding. We've been looking forward to it for quite awhile.

We left Thursday night, drove partway and stayed in a hotel. The kids are good travelers anyway, but we borrowed a DVD player which also helped. Glitch #1 happened when we got out at the hotel and realized that Henry hadn't worn any shoes. Luckily there was a K-Mart nearby.

Glitch #2 happened when, 35 miles away from our destination, we got stuck in traffic, and it took us 3 hours to make it the rest of the way! We eventually made it to the Friday night event- a picnic on the Lafayette River (I hope I have that right, I just tried to figure it out by looking at a map). There were so many children at these gatherings- it was really fun and family-friendly.

Henry loved watching the water and the boats, of course. He also loved watching this guy make waffle cones:

I'm not sure why it fascinated him so much, but I enjoyed watching Henry watch the cone guy!

Saturday we weighed the many fun options and decided to visit the zoo with my sister-in-law and her sons. I think it was a good choice, especially from the Henry perspective. One of my concerns when we get together with family is how to let them get to know my kids in a brief window of time. The zoo is a good place to get to know Henry. He is a little more interactive there than usual. He likes to get a map and track where we're going and where we've been. He's very animated talking about all the animals and instructing me to take pictures of all of them. (I guess it's safe to say that Henry is a visual kid. He makes me take a photo of each animal and then wants me to print them all out. Sometimes I fib and tell him that I did take a picture of the goats at the petting zoo, when really I didn't because we have a dozen pictures of goats on our computer already. But he always catches me in that lie because he remembers 3 days later and asks me to "print out the picture of the goats".)

The wedding reception was at Bill's aunt and uncle's home, also on the Lafeyette River. I was a bit freaked out when I spotted Henry out on the dock by himself right away. But I later found out that the family had hired some babysitters/spies to keep an eye on things and make sure none of the children wandered off or got into trouble. That helped put my mind at ease. They really thought of everything.

In this picture Henry is clutching his reward. If there's one thing I learned on this trip, it's always a good idea to have a reward up your sleeve. Some may poo-poo the idea of bribing your kids, but I'm all for it.

I started warning Tommy several days before we left that he would have to wear long pants to the wedding. Oh, the torture. I told him if he did a good job and didn't argue, he could have a reward.

When shopping for his reward (Indiana Jones legos), I happened to come across a 750 piece Disney puzzle that we didn't have yet, and picked that up for Henry too. I was thanking my lucky stars for that stroke of brilliance when, after the wedding, we were asked to stay behind for a family photo. I told both boys that I had a surprise for them in the car after they cooperated for the photo.

The surprises probably would have worked even better at an indoor reception. We lost a few pieces in the grass. But still, it kept the kids occupied longer than they would have been otherwise.

That's right. This wedding included a fireworks display! How awesome is that? Henry is covering his ears, but that doesn't mean he didn't enjoy it. In fact, the fireworks were his very favorite part. The bride said they were her favorite also. They had been a surprise for her.

I love weddings for so many reasons- the dresses, the flowers, the music, the dancing, the food, the drink. And now that I've been married 11 years myself, I love them for reminding me of our beginning. When you're the one saying the vows, you hear that "for better, for worse" stuff and think yeah, yeah, whatever. We won't have any hard times. We won't have any sickness.

And then you look around 11 years later and you think whew, we have actually had some tough times. Good thing we could hold hands and get through them together. This getting married thing was a good idea.

This guy, even though he gets so irrationally mad when he's stuck in traffic, stays out too late partying with the young cousins, and takes his shoes and socks off at weddings? He's a keeper.

In summary: weddings are good. How fortunate, then, we're attending another this weekend. :-) And this time, the kids aren't invited, so maybe we'll get to do more dancing.

Also, see below for glitch #3 of our trip.

glitch #3

Virginia trip glitch #3 seemed like it needed a post all to itself.

As I said in the previous post, we've been looking forward to this wedding for quite awhile. I knew the reception was going to be outside, at the bride's parents' home, and so had bought a couple dresses that I thought might be appropriate before we received our invitation reading "black tie optional".

So the floral sundress was definitely out- I wore it to graduation instead. I asked my boss to ask his wife (my unpaid fashion consultant) what I should wear. He came in to work the next day with 3 black dresses for me to try on! Could I get any luckier?!

I tried them on and kept the one that fit the best. Bill rented a tuxedo. And I figured my kids could still wear what I had planned for them to wear. Saturday, as I was attempting to style my hair, I noticed something in the mirror. (Don't you love hotel bathrooms? They have so many mirrors that you can see yourself from every angle?!) The little button at the top of the dress was gone. Fell off before we even made it out of the room.

Damn. One time I try to dress up and look like a bigshot and I lose a button. At the church, my father-in-law's wife was great- she told me to just let the sides flap over to make a v-back and no one would know the difference: So that's what I did, and I guess it was fine.

But now I have to either 'fess up to my boss and his generous wife, or try to replace the button and hope they don't notice. It kind of feels like a sitcom story, where I'll try to replace the button and she'll notice right away, because the button on this dress was some kind of heirloom.

You just can't take me anywhere.

(Sorry, I don't have a better picture of the dress- this is the ONLY picture of me from the wedding at all, 'cause I was taking most of them.)

resigned

Henry got sunburned this week.

This is good news. Henry was out in the sun long enough to get sunburned. Even though he was wearing sunscreen. Just like the rest of the kids at L's house. Today looks to be the 3rd day this week they'll spend at the pool, and come home worn out and hungry. That pool pass I bought might actually have been a good idea.

So we take some steps forward.

Sometimes, on the other hand, we feel stuck in one spot. Take graduation day, for example. As you may have gathered from the family photo, Henry was not being very cooperative that day. Call it dysregulated, call it oppositional, call it difficult, call it autistic. Whatever you call it, it's pretty ding-dong frustrating.

Oh, we brought books and Leapsters with us to entertain him- I didn't just become a mom yesterday. But the thing is, on an occasion like graduation, all bets are off with Henry. I think he's reacting to several factors:
-A new situation. Never been to a graduation before. (The location, however, was quite familiar. The high school, middle school, and Henry's elementary school are literally connected in one big campus. Graduation was in the stadium.)
-Boredom. It was hard to hear much of the ceremony, and Henry wouldn't have been interested even if he could hear it.
-But there was too much distracting input for him to just zone out with a book
-Heat
-And this is a biggie- emotion. I think Henry can sense when a situation is highly emotional, and he doesn't like that vibe. It makes him uneasy. So it becomes his mission to make the rest of us uneasy :-)

So he started right in with stepping on our feet, pinching us, squeezing our fingers and hands, trying to push us off the bleachers. All the relatives tried their best to help by asking him questions, etc.- trying to distract him. (Amateurs.) It didn't take long before I left with him and walked around the school and over to his playground. That was fine- I actually was initially glad to have the distraction. It kept me from sitting there just thinking and reflecting and making myself cry.

But I did want to actually see Kate walk up and get her diploma, so we ended up back in the stands, straining to hear each name as it was called. Henry settled on a new method of torture: pressing his forehead against my jaw with all his strength. I just let him do it- it kept him quiet. We sat that way for quite awhile, until all of a sudden the heat of his head against my sweaty face got to me, and I realized what a bizarre little scene we were making.

"Henry, why are you doing that?" I blurted out. (Questions like this are totally pointless, and are usually met with "Why are you doing that?" shouted back at me.)

But this time he calmly replied "I'm the invisible man" and went right back to pushing against me. I have no idea what that meant, but it broke the tension and made my sister-in-law and me both laugh.

By the time we were taking the pictures, a few half-hearted attempts were made to get Henry to turn around, but I think everyone knew it was a lost cause. It is what it is- a moment in our family's life preserved for history. (Bill did capture him before heading home, waving out of Grannie's sunroof.)

I want to think of a better word than resigned. I want to say we are resigned to life with autism, except I want that to sound more positive.

Here's another example: that same weekend we went to a backyard party for a friend (but we did not know the people who were hosting the party). Henry marched right into their house and asked for their movies.

This probably would have embarrassed me a few years ago, and I would have spent all night trying to get Henry to stay outside with the other kids. But now? Now I don't miss a beat- I just explained that he'd like to examine their collection of Disney movies, would probably lay them all out on the floor, and would want to watch one. I didn't apologize and I didn't even explain that he has autism.

He's just my kid and this is what he likes to do to be comfortable and that's what you get if you invite me to a party. (Not that I get invited to many parties.) Later I found him in the daughter's room, rummaging through her bookshelf, looking for Disney books. That's not appropriate behavior. But I'm just too tired to fight it anymore.

I don't know whether that's something to be proud of: I accept my son the way he is and everyone else should too.

Or whether it's something to feel defeated by: Autism has worn me down until the inappropriate has become appropriate, or I can't tell the difference anymore.

Maybe both are true, depending on the day and my mood.

(This post ended up sounding mopier than I really intended. Sorry. My allergies are making me feel crappy and we are getting ready for a biggish out-of-town trip that has me a little stressed. Happier post next week about the super-fun wedding we'll be attending in Virginia...)

four

Mommy, which one is for me? (Looking at my birthstone necklace. His stone is purple.) Oh, thank you mommy! I love purple! It's my favorite. Well, red is my first favorite, but then is purple. Which one is for Kate? Which one is for Henry?

(Seeing that the cooler on the back patio is empty) Daddy, did you drink all the beard?!

Mommy, thank you for this new lamp. This new lamp is really cool. Off. On. Off. On. Off. On. Thank you for this lamp. Henry, you have a new lamp. See? Off. On. Off. On. Off. On.

Weiner is another name for p*n*s. (Girl who goes to the same sitter) told me that. Yeah, weiner. (Girl who goes to the same sitter) thinks that's funny. Weiner. (Girl who goes to the same sitter) says weiner instead of p*n*s.
(Trying to ignore the subject is not making him stop talking about it. It will be a long summer before Girl who goes to the same sitter starts kindergarten.)

Where do skeletons come from?

How do airplanes know where they're going?

Why did you put Henry's name on his shoes? (Actually, I just put his initials.) What are initials?

Hey, what are these? Scissors?

Mommy, why don't I have any bones in my tummy?
I spilled.
Mommy, who do you want to be: Batman or Robin? You can be Robin. You really can. Even though you're a girl.
In our house, before it was our house, um, who was the family that used to live there?(me, after telling him about the previous owners): That's a really good question Tommy. You are like a detective- you ask a lot of good questions.Yeah. (pause) Mommy, did you know that some plants don't even need sun?! They don't. Daddy told me. Like those pink flowers with the leaves? They don't need sun!

Mommy, I thought I couldn't do it, so I called your name because I wanted you to help me but then I tried it again and I did it!

(me, after he has repeated the same phrase over and over): Why do you keep repeating that?
Because I want you to say it too. That's what Henry does.

Mommy? When I'm five I will call you Mom.

she did it!

Thank you, thank you friends and family for all your support.

sum sum summertime

Well, I'm up so ding-dong early that I thought I might as well write a post.

I've been freaking out, off-and-on, for months about what to do with Henry this summer. He could technically go to Easter Seals' summer camp for one more summer (the program is for kids up to 8 years old). But they have moved to a much-less-convenient location, the new location doesn't have a pool (a major factor in Henry's enjoyment of previous seasons), and I was unsure how much good that program was doing for him. I don't care about working on goals or anything like that in the summer, but I do want Henry to be stimulated and entertained and have fun. And as the oldest kid in that setting, I wasn't sure that he would. And I feared that his undesirable behaviors might gain some ground.

In searching for other summer options, I found that many programs were only offered a few hours a day (I'd call that "morning camp" rather than "day camp", wouldn't you?), and others were more than double the cost of what we had been paying at Easter Seals. Gulp. Not to get all up on my soapbox (ok, maybe just for a second), but what the hell are working parents of disabled kids supposed to do?

Tuesday I visited a potential (expensive) option. More about that next time. Tuesday night I had a little nervous breakdown (summer plans being just one piece of that). Wednesday I called Easter Seals and asked them to send me the registration packet. Last night (Thursday), when I picked Tommy up, L asked if I would like to have Henry come there for the summer. Um, duh? That would only be the perfect option.

Needless to say, I had been hinting around about this for months. L often watches Henry on random days off from school and holiday breaks. But the main concern she had expressed about the summer was their frequent trips to the pool. The smaller kids kind of split their time between the baby pool and the big pool. Sometimes L packs their lunches and even gets them to take naps there, under a tree!!!! (This woman casts some kind of spell over these children.)

Henry wouldn't want to stay that long, and he's way too big for the baby pool. His swimming skills are decent, but not good enough to hang out in the big pool by himself. And his social skills at the pool, um, leave something to be desired. His main ideas of fun interaction at the pool are:

A. Splashing you in the face over and over

B. Chasing you around and trying to dunk you

While other kids might enjoy those activities for a time, Henry needs help knowing when to END the playing. He might not pick up on cues like "Henry, I don't want you to splash me anymore." Ya know?

So, anyway, L's 14-year-old daughter (K), an excellent babysitter herself, had another option fall through, and is willing to be responsible for Henry at least a portion of the week, with L covering the rest! K can help at the pool, the park, the library, etc. AWESOME. I think it will be a relaxed summer for Henry, which he deserves. And Tommy is always excited about having his brother with him.

(And, I can drop both kids off at one spot and maybe get to work on time. Whatever.)

So, let's take a moment to appreciate that things do work out sometimes.

counting our blessings

Let's try to lighten the mood here by documenting some random funny kid stuff.

L had asked me to help out today by picking the kids up from preschool and bringing them to her house. Since 4 and 5-year-olds' lives are pretty boring, this was a BIG DEAL- much discussed ahead of time.

They all got buckled-in and I put in the High School Musical 2 CD to impress them as a cool mom. They opened up the console between the seats and pulled out the treasures in there: some happy meal toys, a portable CD player and a calculator. Then Tommy piped up:

"Guys, my car is really cool. S- look up. See that? See that? That's a hook that you can hang clothes on."

The hilarious part is that the other kids all agreed that the hook for hanging clothes on was a really cool feature. I'm thanking God that none of them said "oh yeah, well my car has a DVD player."

May my son always be this proud of the standard features of our life.