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!