Ch-Ch-Ch-Changes

Friday morning, we set off bright and early to take Ditto Boy to his Y summer day camp, and when we get to the end of the street, we see this:
The Old School

This is his school. Or…was. He’ll be in fifth grade in the fall. The fifth-grade rooms are that front pile of rubble on the left.

I was shocked. I’d complained bitterly over the past week as they’d taken down all the 100-year old trees that sat along the front and sides of the school yard, but I assumed that perhaps the roots were getting into the sewers, or the branches in the lines. (I never like to see trees cut down, particularly that old, unless they’re damaged.) But this?

Fortunately I was dealing with Ditto Boy. He hardly noticed, his attention flitting from object to object like a starving butterfly. The other two don’t go to this school; they’re bused to the school with autistic support.

But coming home from camp, Little Miss takes one look and yells, “They’re destroying W’s school!” (Yes, she used the word ‘destroying.’ I didn’t even think she knew it, considering she doesn’t talk half the time. Weird. But hilarious.)

Captain Oblivious then started on a diatribe about why they must be doing it that no one paid attention to after the first couple sentences. We were still overwhelmed by the debris.

I was just really grateful that neither of my kiddos who can’t deal with change attend that school. It would have been the subject of obsession the rest of the summer, even through the new construction that I’m sure is a planned follow-up to the disaster.

Change is just not something we do. Even the impending two weeks with the Cabana Boy’s mother is already a source of stress for Captain O, not because of the visit, but because his grandmother will not let him watch Lost in Space on Thursday nights as we do here. Last summer when they went, she was pretty stirred up when he wouldn’t go to sleep at night because he obsessed about not being able to watch television in the morning (which she doesn’t do–they’re not big on television there, even less so than we are. But if it gets me 20 min more sleep in the morning, I’m all for Spiderman.)

This, of course, gives me some concerns for the upcoming switch to middle school, as well. So far he’s seemed to be pretty low-key about it. The sixth-graders all had a tour of the middle school, saw the 7th and 8th grade classrooms, lockers, etc. The autism support teacher invited us to come the week before school and stay as long as we like, getting familiar with the schedules, the lockers, the changing classes–just the sheer numbers are going to throw him, I’m afraid. We’ll keep our fingers crossed.

At least his school is still there. So far.

Can I buy a clue, Alex?

I always find the posts fascinating where people analyze how folks wandering the InterWebs find their blog. Like my friend over at Odd One Out, , with her somewhat unfortunate but benificent discussion of slug genitals, it’s hard to believe what gets people to this page.

Most voyages are fairly explicable. Many people ended up here searching the name of Ann DeWalt, my sweet little old lady who kicked the obnoxious Iraq vet in the kiester. ‘Peas and carrots,’ too is popular, though I’m not sure people have my post on children and disaster in mind when they look for it. “The real meaning of success,” too, as well as a multitude of varieties of “tattoo.”

The one today, though, really took me aback: “i’m a tss how do i deal with aspergers?”

Oh man. Some family is in serious trouble.

Having worked through several different agencies since we first got a diagnosis, I surely know that different agencies provide different levels of training for their staff. Our first didn’t have much. This latest one is more of a specialist agency in autism. But if new TSS are getting their training by a google search on the ‘Net? Whoo boy.

On the other hand, I have to admit, us moms and adult Aspie types are sharing a lot of information about what works and what doesn’t. Maybe that’s what a TSS needs to hear. Each of these kids is so different that training that’s a one size fits all may not cut it. I hope so anyway. I hope he or she found somethng that will help them help their assigned child.

I hope it’s not my kid’s TSS. Because I don’t have much more clue than that myself.

Snippets

So far this week, it’s been a rollercoaster of ups and downs. The county people told the newspaper they “have no clue” why poisonous gas appears and disappears on the street in front of our house. That’s reassuring. (please insert sarcasm here)

On a high note, a fiction piece I’ve been trying to publish for four years finally came out–and I got paid!! Makes me all warm and fuzzy inside. You’re welcome to take a peek– My Sad Cuisine . I’ve definitely been in this field too long.

While we have not yet resolved our camp issue, it is becoming painfully apparent that Captain Oblivious has reached a plateau in his functioning level that may be permanent. He’s nearly 13 and has a crying fit whenever something happens he doesn’t like. For example, yesterday at camp, surrounded by therapeutic people, when it was announced there wouldn’t be computer time because some repairs were needed, there followed a 15 minute rant that caused him to have to be be removed from class and counselled in the hall. A similar breakdown occurred last week when the eye doctor recommended bifocals for his terrible sight. He didn’t want bifocals, they were awful, he couldn’t get used to them! Scream, cry, rant.

We all, therapists included, have been working on the meltdown situation for six YEARS without improvement. I think I’m becoming resigned to the fact that he will always deal with things this way. It makes me sad (No really it pisses me off. I am convinced he could control it if he tried. Maybe not. Maybe we’ll never know.) Employers won’t deal with that. Places of higher learning won’t deal with that. How will he be able to function on his own?

Then one of my girls came to me for some important advice. That always makes me feel good.

And finally, the “Welcome, Summer!” edition of the Carnival of Family Life picked up one of my pieces, but there is a whole beach basket full of lovely reading there for folk from families. Stop in and take your shoes off!

The interesting life

“May you have an interesting life.”

They say this is a Chinese curse–and I fully understand why.

Saturday we had taken Little Miss to a birthday party (oddly enough, she gets invited to all of them!) and then did some errands. After we picked her up, we returned home to unload a car of groceries, when it became clear something was very wrong.

The faint odor of rotten eggs we’d noticed when we walked in had gotten stronger, particularly in the basement. This wasn’t something new for us, as there has been some contamination of the sewers going on, causing periodic governmental action. Which is what hit us next.

The fire department knocked on the door and told us to get out. This gas can apparently kill you, so we complied. They advised us to go to their staging area in a nearby strip center parking lot; they had buses where people could wait.

Okay, so picture three special needs kids evacuated from their house, Captain O particularly obsessing about everything that wasn’t routine, waiting in a bus with a bunch of strangers for an undetermined amount of time. I don’t think so, Tim.

So I called my father, who lives in town; he was clearly less than thrilled for an invasion at 7 p.m. on a Saturday evening when he was firmly cuddled up with his bottle of bourbon, but he said all right.

On the way out, it occurred to me that if the city was looking for the source of this poison in the sewer, the smell shouldn’t be in our house–because we’re not attached to the sewer. We drove to the fire department staging area to point out this oddity to them. The officer appeared thoroughly overwhelmed and just nodded, suggesting we should find a safe place because of tornadic activity in the area.

WHAT???

Of course, Captain O hears this and starts obsessing about where the tornado is, because you know they can change direction at any time and how we could be hit by it and… So the Cabana Boy reassures him we’ll be very safe. We change our destination and go to my office downtown instead, because we have Internet service there (which my dad doesn’t have) and that way we can keep track of things. As we pass by the fire station, what goes off but the tornado warning siren. Fabulous.

At the office (where there’s some huge party happening on the floor above us with a live band, and people oblivious to the dangers outside), we wait. And wait.

Did I point out I’m not good at waiting?

So after a couple hours I call down to the fire department to see when we can go home. They don’t know. They’re going to call us back. (Right.) So we wait some more. And I can’t stand it. For all I know, Hazmat has demolished our house and found some Indian graveyard under it releasing deadly gas poisoning the white man. So I leave the Cabana Boy with the kids, who are absorbed playing on the computer, and head home. Nothing. Except the high winds brought down a huge tree branch into my front flower garden. Fabulous. I check my basement which still smells of rotten eggs, and march down to the Hazmat truck to warn them. They send a team of four people down to check, and they reassure me we are barely registering on the scale, so we can come home. All is forgiven. Etc.

I drive back to the office, where the fire department has ACTUALLY CALLED BACK to release us. Impressive. So we went home and opened all the windows, aired the place out, and spent the night. No one woke up dead this morning, so it’s all good. Can’t wait to see what crisis we have tonight.

Mea culpa, mea culpa!

Okay, I’m sure it is my fault I have children with special needs, and I deserve to be punished for it–more importantly, they apparently deserve to be punished for it.

We did get approved for our therapeutic summer program, with 30 hours of TSS/mobile therapy each for Captain Oblivious and Little Miss, so they could attend a summer camp sponsored by a Catholic school in a city 30 miles away. We’re driving them there and picking them up. While the therapy is covered by their medical card, we’re forking out $155 a week so they can go to camp. Because that’s how much camp costs–$100 per week for one child, or for two children, $155 per week, for camp from 8 am to 5 p.m.

Except apparently our money doesn’t go that far. I came to pick up the children today at 4:15, to discover everyone frantic because I was not there at the 3 p.m. cut off for TSS. The kids there for therapeutic social interaction are apparently not welcome after 3 p.m., because they have no personal babysitter. (This is where I will withhold comment about how wonderful it is for the Catholic school to act in such a good Christian manner.) But the school will still charge us full price for the two hours we’re not allowed to stay.

Now this was not the policy last year. Last summer the children could stay till the end of the day, two hours, without TSS. Perhaps there was an incident, or something not made public…but the school camp has changed policy (and apparently not bothered to mention it).

As one might imagine, this rubs me the wrong way. The camp director was busy having a fit today, so I didn’t engage her in serious discussion about it. I did ask the wrap agency guy on the scene if it would jeopardize their relationship with the school if I raised hell. He assured me with a smirky little smile, that he thought I should do whatever I saw fit, as a consumer. He knows I’m a lawyer. Perhaps I’ll do their dirty work for them–I know they’re not happy with what’s gone on so far–and the first week isn’t even done.

So I’ll give them a call tomorrow. Point out the error of their ways, as it were, and see what we can do to make it better. Or as my secretary always says, “Are you going to make them cry?”

Let’s hope so. Stay tuned.

Waiting

Some people dwell on the past. Some people obsess about the present. Me, I seem to be always looking ahead, waiting.

I’m the family planner, so I’ve got many, many things that are coming. Doctor appointments, haircuts, prescription refills, family gatherings–all of them waiting to happen, but on my mind now, to make sure they’re not missed or forgotten. (Because, seriously, a lot more things get forgotten these days than there used to be.)

Same for the office. Half the time, I’m waiting on other counsel to send me the paperwork I need to move ahead with a case, or dates for court hearings, or clients to remember to call me BEFORE they do something stupid instead of after. Waiting, waiting.

Then there’s the writing life. I work really hard to pull together a story, polish it up, find an appropriate market, send it out–and more waiting. Sometimes days. Sometimes months. Even after an acceptance, sometimes you wait too–I got a short story accepted last week, and I’ve been waiting for it to show up so I can share the address with my blog readers, but it’s not there yet. My Cup of Comfort story is coming…in December. A writer friend of mine just got a copy of one of his works newly in print–that had been accepted in 2005! Godot arrived faster than this!!

Which brings me to the subject of patience.

The Cabana Boy would tell you this is something I struggle with daily. Moment to moment, even. I am not a patient person. I have always been a very hands-on, get-the-job-done, don’t-waste-my-time kind of person. I multi-task almost all the time, and find it hard to sit and do nothing. Even raising my older children, we moved through life quickly, accomplishing tasks and goals.

What a difference now! These three special needs children we’re raising are not geared toward fast-moving achievement. Their blossoms are slow–oh so slow– to open, and often curl and twist with missteps. Frustration and more waiting! But also, perhaps a bit of education. They say we choose our lives before we are born, lay before our souls the lessons we need to learn. If that is true, then I must come to terms with patience, with waiting.

American writer Barbara Johnson said, “Patience is the ability to idle your motor when you feel like stripping your gears.” Here’s to a dance with auto mechanics. Let it be.

The more, the merrier?

My Seattle daughter is now my Pensacola daughter–or will be Sunday night when she arrives in Florida after spending four days with us, along with her three little ones, ages 7, 5 and 3. She made the trip cross country to see all the “grands” before they get settled into their new home.

It had been just over a year since we’d seen the children, and of course they’d gotten bigger and more adorable. (They ARE grandchildren, after all!) Before she arrived, she’d changed her plans several times, which complicated my schedule, as I’d taken certain days off so I could spend time with the family– so there was some adjusting to do, as I couldn’t skip court appearances. She’d also wanted to go to Niagara Falls, so we had that ready to go; but on arrival, she’d decided not to do that. But I pride myself on being flexible, so we made it work.

On the up side, her best friend from high school, who still lives in town, delivered her third child the day after M arrived. So she got to be here for that. We also had two successful large group dinner/dessert outings, one with just my in-town daughter, who has five children, so with M’s three and my three…it was something. Friday night we had all those, plus M’s friend with her new baby, husband, and two kids, as well as several other friends, aunts and cousins. Hurrah for paper plates and cups!

M’s poor little ones were showing the toll of 10 days driving across country, away from home, exposed to multiple kids with bugs. This morning, two of them were throwing up as she drove away, but she packed the car and bravely soldiered on. She reminded me of me, at my best, some 20 years ago. So that was reaffirming.

On the other hand, having an in-house comparison to our three, a reminder of what “normal” or “typical” really means… the contrast really hit home. Even Ditto Boy came up with odd outbursts from time to time, sounding very much like his older brother–“You know lightning hits boys twice as much as girls!” or “I’m really more girl inside than I am boy!”–totally unprompted and ready to swear as fact. Captain Oblivious was in his Aspielicious element, with even more people to talk at about things they didn’t care about. Little Miss, still not herself, more I think to do with her impending menarche (!!!) than the passing illness, was a little overwhelmed with all the people in her space. To her credit, she didn’t act out, but tended to herself and found quiet corners alone quite often. But on just about every level, M’s children were more social, better spoken, more perceptive, better ‘readers’ of others… at half their age.

The end of the year grades/IEP reports also came this week, with gentle scolding about the behaviors that still aren’t acceptable in school, but apparently can’t be stopped. Both of these, I guess, are just little reminders, I guess, of the fact that no matter how far we’ve come, we have a hell of a long way yet to go.