Saturday, May 30, 2009

The Obligatory IEP Update Plus.....

They actually offered me an alternative placement at another school in our district, for which I will schedule an observation....BUT

G will go to his home school. Here is why:

1) he expects to be in school there next year
2) Nic expects him to be there
3) they will ride the big bus together
4) they didn't realize they told me at the beginning of the meeting that the alternative placement had lower functioning kids and was actually a segregated class the first part of the day
5) They told me at the end "Well, G would be the only K'er in our school with ASD."
6) I really don't care if he's the only kid at that level with ASD--they have the supports in place at that school for him anyway and
7) there will be at least 3 more kids dx'ed in his class by 2nd grade if current trends hold.

So. I will humor them and see this other placement. But my mind is made up.

They will have to knock my socks clean into the washing machine and turn the damn thing on to change my mind.

Nic had a good couple weeks despite having had a sub in school. Yesterday he came home and asked to go to the local 'fountain store' (mall) for elevator adventures, and we somehow managed to be there for three hours. (Well, the new UP books were at the bookstore and they had to read every last one of them....) Dh brought home pizza, and we arrived almost exactly the same time he did, so that worked out all right.

We did a post mortem of the IEP after the kids left the table, and as usual he called me 'strident', 'unyielding', 'stubborn', and all the usual flattering things post IEP meeting. He didn't have anything to say, which was probably good, because every one has learned to fear him opening his mouth at these meetings, and G's teacher was there to back me up on all the points I disagreed with in the evaluation report.

It was a good meeting, but I will think it brilliant once I have the NOREP with the placement I want and with the services G needs in it.

Okay, much to do around here, so may as well get to it. Going up to MIL's for dinner and so far no suggestion of her coming back with us. I had to meet BIL and wife in town to notarize some paperwork or other at the Italian consulate. Talk was stilted. I think they blame me for a lot of stuff, starting with my kids' issues and ending with DH's relative estrangement from them.

I already said that I am NOT managing the latter--DH is, and whatever his relationship is or isn't with BIL or MIL is not my doing. That DH has chosen me is the beginning and end of discussion. He had to see some things on his own and make his own decisions about how to handle it/them.

I don't get a vote in those matters--nor should I.

So am I feeling some guilt? No, guilt's not the right word. Regret maybe. Regret that everything they do is SO either-or, no room for compromise, really no room for anyone but them. If you are not for them, you are against them, so they think.

You know, life is REALLY not that simple.

But they are. And we have to live with that.

On a cheerier note, my buddy from Maryland invited us down to her digs when school lets out. We have Nic's first CYO breakfast tomorrow, and he's coming out with me this am for breakfast and errands with a friend. G is going to tee-ball with DH, then we'll all meet up to go swimming and have lunch after.

And I signed the boys up for tennis. I think we're doing ok.

Friday, May 29, 2009

G's Transitional IEP to K Today

SO, meeting in a little more than an hour and I am not sure how ready I am. Nic in so many ways is so 'typical' in his autism, and G just colors way outside the lines. I am not all that confident that they will figure out how to teach him, because I'm not even sure how he learns what he learns.

He's not reading yet, although he does recognize visuals (he built an ant farm with DH just looking at the diagrams in the instruction book--and had a better idea of how it all fit together than DH did). But his audiological processing is WAY off and he needs to gallop to and fro to process new info.

He also seems painfully aware of what he DOESN'T know.

Nic OTOH has finished up an awesome year. He is now swimming in deep water, swimming 50 meters at a shot at a pretty good clip, making friends, becoming (slightly) less obsessed with elevators and ran track with the CYO this spring.

Overall, both kids are doing well, and I'm happy about that. But I'm tired of dealing with ignorant parents who think autism is contagious and that my kids need to be shipped somewhere else. Kicking and screaming will the foolish be dragged into the 21st century....

Wednesday, May 27, 2009

Watching the Fightin Phils with the Boys Last Night

So Variety had tickets for a Phillies game last night, and had some extra so I could go. We took a school bus from the camp, which was loud and not very comfortable. I have a lot more thoughts here that will keep for a few. We had a great time at the game. Nic was actually following along with who was at bat, what they were doing and was really engaged—a long way from our first ball game last year.

This is even more impressive when taken with the circumstances. Last night was cold and wet, and we were sitting up in the 400 level (equivalent I think of the 700 level in the old Vet). Not the most comfortable of conditions, but the boys had a blast anyway.

G got a little wound around the axle about when the bell would ring. I explained it wouldn't 'ring' unless there was a Phillies home run. Then he became obsessed about the bell ringing--afraid obsessed, that is. It didn't ring, but the Phils won anyway.

Nic's really big moment was when we were taking the elevator back down at the end of the game (he had gone off for some elevator adventures a couple of times throughout). We had an elevator operator—an older man who was actually getting paid to run the elevator—who told Nic not to touch the buttons. Was not particularly kind about it, either.

A year ago, even six months ago, Nic would have had a fit. This time, he *got* this other person and the need to control the elevator buttons. He simply stood there and pointed out what each button did, to which the man testily replied “I know what they do, don’t touch the buttons, young man.”

And the guy couldn’t get us off the elevator fast enough. Nic was amazingly philosophical about it. I’d be curious to know what he thought about this guy, whether he saw himself, and why he was okay about letting his control on this go. Such a huge step, and really such an innocuous situation when you think about it. But since this is Nic, and this involves elevators and controlling them, it’s a pretty big deal.

He really made me proud. Thinking that he’s really grown up a lot this year.

On the ride back to camp, they both sat with me on the bus, Nic curled up next to me clutching one of my hand in both of his, G on my lap clutching my other hand with both of his. Maybe for me the best part of the night, because I know I don’t have many—or perhaps any—of those moments left.

Monday, May 25, 2009


Just had a pretty funny conversation with DH about UP. I think it's the best movie Pixar has done yet; he thinks Ratatouille is the best one.

I had a pretty complex list of reasons for my choice--so much so that my DH apologized to me for not agreeing, which I thought was pretty funny.

"Why are you apologizing?" I wanted to know. I was enjoying the debate.

He just shrugged.

I laughed. "Are you afraid I'll call you stupid if I don't agree with you?" I had a relationship like that with some one else--except I was the one getting called stupid when I disagreed.

He replied "THAT would never happen."

And he's right. And the vice is definitely versa.

Which is why we have a relationship that is old enough consume alcohol....

At Long Last Dug Out

Probably for the first weekend in months we have no plans. So we've been having a bit of a staycation and getting stuff done. I mean, really, clearing out, not just stuffing stuff in a box and stashing it.

That means taking the seven years of files since Nic was dx'ed and putting his IEPs and communication between me and his various therapists over the years, going through Gabriel's 4 years in the system and figuring which IEP print outs were redundant (the IEP where we reinstated all services two years ago was a freaking train wreck--reading my emails between me and the SPEDWitch reminded me just how badly they screwed up serving my little guy, and reminds me that I have to be ready for anything this Friday.

It was instructive to read through Nic's IEPs too--there was a lot I screwed up from inexperience, but I feel MUCH better prepared for G's transitional IEP to K. He is much different from Nic, but I am a much more competent member of the IEP team now, too.

It'll be fine.

But on the other front, I'm putting my plan into place about educating about autism. It's a two-part plan; the letter to the head will go this week as planned. I am working with a couple other moms on meeting with the powers that be, too. And I am also planning to meet with the principal at Nic's (and soon to be G's) school.

Time for Phase II. It's a measure of success that I can actually think of these things now.

Of course if they want to put all the ASD kids in the same 4th grade class, that's going to be another battle.


I went to 7 am mass yesterday and got a chance to talk to Father Mike briefly. He seemed really glad to see me and I think we might have him plus K and Al over for dinner on a Saturday in a few weeks.

Just felt good to see him, like an energy boost. I needed that.

The kids have been chattering about UP since the screening the other week. I think we might be making a couple trips to see it in the theatres. And that was a first, BTW, seeing a movie in a theatre, for both of them. And what a great experience.

I can't wait to see it again, too.

Friday, May 22, 2009

Onward and Upward

On Wednesday, we had muffins with mom at Nic’s school. So I drove him in and as we were walking toward the school he reached for my hand. I told him it wasn’t cool to hold mom’s hand. He gave me a look that was as funny as it was beautiful—it said “You really think I care what anyone thinks?”

And he took my hand with an expression that said “and that’s that.”

So when we got inside, I had the usual angst about whether we would sit alone, and a little girl from his class waved him over. Conveniently, her mom was the other room mom, so I had some one to talk to, too. We chatted until her little guy wanted his seat back (handy enough, Nic was starting to look stressed that I wasn’t sitting with him) and Nic and I watched people come and go, and a couple of his friends stopped over to say hello (We saw B and his mom, but I’m not sure whether they didn’t see us or chose not to see us). Then we walked down to his class and I talked to the sub running his class (his teacher is out all this week with a strained back), who’s known Nic since K, and she made it a point to tell me how well he’s been doing.

Meanwhile, he was at the teacher’s desk, messing with the calendar cubes. :/

A lot going on. G’s IEP is next week, I got his ER, and the word ‘aggressive’ appears four times. In G’s report. Yes, MY G.

So I saw the psych Tuesday, and she gave me copies (even though she’s not supposed to) of how my responses to a survey put him at risk for hyperactive, impulsive and aggressive behavior (impulsive yes, the others, no). SO I am welcome to add my own anecdotal input to his ER, which I am going to do.

I also met with Miss Maggie because aggressive’ came up in her part of the report. Turns out the G goes after one boy in his class, and she’s not sure why. Good luck in getting any input here from G.

So, she explained that to me, I explained that to the psych, and she told me to add that to my anecdotal stuff.

G will be at his home school in the fall with support. He shows readiness for K. But I can already see he has stuff in his way regarding his ability to learn, but I guess I’ll drive off that bridge when I get there.

Neighbor kids. They really will be the death of me. Gabriel is now aggressively (ha) trying to push in, and of course he is getting pushed out. He doesn’t understand why, and his feelings are hurt. But I will allow him to keep trying, because if I make a big deal of saying no, he’s just going to fixate on it/them. They are jerks to him and it makes my blood boil.

Nic, on the other hand, sees the head mean girl and says “V’s out. I’m going inside.” LOL

But G wants to play with the kids. DH and I exchange looks and he tells me to let him go. So G goes. I’m not happy to let him. Long story short, I ended up going to bail him out. He called out “Goodbye everyone, I have to go in to dinner!”

Not one of them responded. There were like 10 of them. Jerks.

The battle for acceptance and against ignorance continues....

Thursday, May 21, 2009

Maybe the Speaking Thing Will Work Out After All

After a promising start, my speaking business has pretty much stalled out. Here's the thing; there are thousands of parents out there with a story, and a vast majority of them want a book, want an appearance on Oprah, or want to be speakers. As I've said here and elsewhere, I don't have the narcissist quotient to pull any of this off. And the longer I'm kicking around in this space, the more I see how necessary it is to *be* some one.

That said, I am content to hang in my little backwater and continue doing what I do. Which is a little of this, a little of that.

Last Wednesday, one of the advocates hooked me as I walked into Task Force saying "We need a speaker! Our parent head bailed on us and didn't set anything up? Do you have any ideas?"

I opened my mouth to say....well, now, I'm not exactly sure what I was going to say because she kept talking. "YOU!" she shouted. "YOU can come talk! Do you want to?"

"Sure," I answered, thinking I could probably talk about a dozen or so things. "What do you need?"

"Oh, I don't know, you can talk about Variety..."

"Autism, inclusion, like that?" I asked. Well, the good news is that I could get paid, but not much. Better news was that some one was asking me to present. It was one of those things where I was in the right spot at the right time.

"Yeah sure," she waved dismissively. I realized she was just happy to have a warm body in the room. But that was fine with me. I had a gig.

So Tuesday found me running late in rush hour traffic in upper Montco, and MapQuest failed to supply me with a crucial turn. In a planned city, this is not fatal; more so however, in suburbia.

But in farmland? I was so screwed.

I broke down and pulled into a municipal parking lot and practically ran over a couple looking to vote (thank God for timing--any other night this would not have worked), rolled down my window and yelped "Can you tell me how to get to Lower Road?"

Thank God they could. I was there in 5 minutes.

Oh, did I mention that I left my contact's phone number on the dining room table?

Yeah, I was batting a round number.

So I rush in and was met at the door, instructed to take deep breaths, and informed that they would not be able to show the PowerPoint I had literally worked on all day to the audience.

BUT, they were able to print it out. I sighed with relief and let that go.

So, about a half hour late, I started my presentation to maybe a dozen or so people. I encouraged people to ask questions as they had them, and what happened was something wonderful. My hour-long presentation melded into an additional hour-long round table that I led about what people were doing with their kids, their accomplishments and achievements, and their visions for their kids.

It was a disastrous start, but a lovely finish.

And this email, in part, came from the organizer.

" Parents sent me several positive e-mails requesting you come again and talk for two to four hours. They loved your presentation. One parent asked if I could keep the crowd small again so that there is more interaction."

I think it went well. :)

Tuesday, May 19, 2009

Gabe at the 12 Foot Wall

So now I have two deep water swimmers. I said this would be the year it happened, and for once, I was right.

Just passed a crazy busy week and weekend. Weekend was packed: fishing, UP preview (what an awesome movie, and the kids want to see it again), Costco, soccer and wrap up, graduation party, rocket launches with Nic's pack, library, bag sale and more fishing (I caught 3 of the 5 total we bagged, plus I was the one who figured out where they were biting--feeling pretty pleased).

Nic forgot his homework folder last night (turned out he had a sub), so we improvised a study guide for his science test and he did math. Having a rough time with division, so we'll be working a little extra in the coming week. He says his favorite sports are fishing, swimming, soccer, basketball and track. And he met a couple 'girlfriends' at the graduation party last weekend. Girls like him. I think he is figuring out that he likes girls, too.

Gabriel found himself in the deep end with Mr. V during swim practice last night. While he didn't screech too much, he's not talking to Mr. V. But he went to the deep end wall twice--a first. He treads water great, but he still swims like a pencil.

Working on a presentation to give tonight, another on Thursday, and have another article in the hopper. Plus the other stuff. And an IEP meeting coming up for G next week, so plenty to keep me going.

And Memorial Day is Monday

Monday, May 11, 2009

Summing up Stuff on my Mind on a Monday

Nic missed the last track meet on Friday because I found out about it this am. Can't fret about it because it's done.

Passed an amazing weekend with my outstanding friends and family and as ever I am grateful for the love, support and understanding of those who get our kids, or at least make an honest attempt. And my kids tend to behave fine as long as they feel like they can be themselves. How sad in a way that the only people who really get to know them are those who care to? It's a great winnowing process and gets rid of the idiots and/or bullies up front.

Nic has an uncanny knack now for figuring out who is going to be trouble and who is going to be a friend. It's actually kind of cool to see it. But he had to develop this on his own, and what a fine job he's doing, too.

(Now that I think about it, he's been reading a lot of bully-centered books, lately. Interesting to watch him internalize then act on what he learns. Pretty cool)

G is something else. He kept me entertained this am while I did battle with some of my own internal demons. I think he may have a future in theatre. Way too funny.

So yesterday they were all on board for Mother's Day. The kids helped me with chores, dad cooked brunch, then we all headed out for a day of stomping through the underbrush. We were fortunate enough to find a state park that actually had an elevator (I vaguely recollected this place from my misspent youth, but I didn't remember the elevator--that was a serendipitous stroke of luck), and were able to explore the surrounding woods and wildflower preserve in relative peace and tranquility.

Also got a fair amount of birding in...I missed that, and it's good that the boys are of an age where they listen and ask questions.

The bluebird sightings alone made my month!

We talked about a whole bunch of stuff that I'll blog on later. It was a pretty eye-opening experience, this whole weekend. Not in a bad way.

Using the quiet now to organize what I need to and ramp up for the next round of events.

Just thinking that I'm 10 years into this parenting gig. 10 years! That went fast. And I have to say it's been a blast.

Sunday, May 10, 2009

Happy Mother's Day!

I would not be mom without my kids, nor would I be the mom I am today without my own mother. She is the rock and cornerstone on whom I raise my own kids. Her strength and wisdom amaze and inspire me, even today. Especially today.

For all my mom friends, wishing you a beautiful day! I hope those in your life treat you well today!

Saturday, May 9, 2009

Funny conversation between me and the boys last night

Over paella last night (turkey burgers for Nic) we were discussing career plans. Actually, they happened obliquely via Nic's favorite movie du jour, Ratatouille:

Nic: Anton Ego wanted to be a food critic when he grew up. I think I want to do that, too.

Me: (laughing) You need to LIKE to try food to do that job, Nic. Like Gabriel.

Gabriel: (brightening up). *I* can be a food critic!

Nic: Linguini was a garbage boy, then he was a cook...

Me: (correcting) Linguini was NEVER a cook--Remy was.

Gabriel: Yeah, Remy was Linguini's puppet master.....

Me: But Linguini had to figure out what was good at....

Nic: And he was good at waiting tables! And Anton Ego then became a small business investor....

Me: You have no idea what that means

Nic and Gabe laugh

Me: It means he owned the restaurant...

Nic: and Colette and Remy were good enough to be his cooks, and Linguini could work as his waiter...

Me: They all found out what they were good at....

Nic: And they all opened their own restaurant!

Now this is cool. We're not only having some pretty cool conversations about what they are seeing and observing, but how they can apply what they learn to what they are doing and where they are going. Nic is already thinking possible summer jobs (camp counselor at the camp where they swim, life guard certificate) for when he gets older, and he's seriously thinking about what he wants to do when he grows up.

Not saying he knows, but he's paying closer attention to what people do to earn money, to pay their ways, and thinking about how he wants to do these things.....

He's farther ahead in these things than some adults I know....

Thursday, May 7, 2009

happy place

G will lead. He always does. Some good things today, just because he was tired of business as usual. Hopefully, his doings were instructive to Nic. Much reviewing ahead, but there's hope for them both, at least socially.

And a little something that I like: One of my favorite tracks ever.

Wednesday, May 6, 2009


So Nic is finally starting to realize he's different. This conversation hasn't yet started, but I anticipate it any day now.

Had lunch with a friend who confirmed that it is NOT my imagination and I AM in fact hitting my head against the wall trying to get my kids included. Trying to figure out how I will make those inroads--I know I eventually WILL....but as ever it's the getting there.

It's so funny, I shared with a friend over drinks this past weekend that I envisioned myself 20 odd years back as a stay at home mom--and she laughed at me. It's hard sometimes to see that person I used to be--the person who has replaced her has been in this skin long enough to feel that it's permanent. But all the time leading up to my showing up in publishing, I was marking time until I stayed home. And then I got a job in publishing and somewhere it occurred to me I'd be working.

And then somewhere along that way I discovered my child was autistic.

And somewhere along THAT route, I realized I had two autistic kids.

So I got re-routed a few times.

Which re-routed my original thought about where I thought I was going. I'm by nature a shy and retiring person who doesn't like confrontation, yet the life I ended up in finds me continually thrust out front and center with a shield and battle apple. I'd find it amusing if it weren't so damn tiring.

So okay, I can't fight all the battles, so I have to pick a couple. Like tonight. Tee-ball and scouts. Tee-ball will be an easy sell, but Nic's already told me he's not doing scouts.

You know what? I don't feel like battling Nic tonight, so I'm not.

I have too many other villains to vanquish. Have to conserve my resources.

and my thought for the day:

Monday, May 4, 2009