Monday, August 31, 2009

Poptropica Unseated

So Nic lost computer privileges for being a bonehead in the big city last week. We were gone a lot of the last little while, so really, he didn't feel the sting of the ban.

That is, until today.

We spent the early part of day up at camp, me returning calls and talking to parents while he watched some videos. When we came home, he moaned that he had nothing to do.

The neighbor kids were out. Basically, I made him a deal; you go out there and play, and you can have Poptropica.

"15 minutes," said he.

"30," I answered.

So guess what, he was actually out there closer to 40 minutes, riding his bike, then climbing the tree with younger kid next door. And he came in when he had enough; THEY didn't go in, as per past, he chose to be done.


So, as my sister posited, is it compassion? Or is it guilt?

I say who cares? Today he exercised right of refusal--just like any other kid.

On another note, we played another round of mini golf tonight, and I won, but Nic didn't envy my winning so much as the hole in one I knocked in at the 11th hole (thanks to his choice--and he had a two on that hole).

He wants to get even. I may let him at the end of the week. :)

Oh, and as for Poptropica, his favorite thing? Golfing is his new favorite. Followed by tree climbing.

It's been a VERY cool summer, indeed.

Sunday, August 30, 2009

One last PS

The kid who took Nic's bike is here, but of course he didn't apologize to Nic, as promised.

This is one of those days where other human beings don't impress me at all. Fortunately, Fr M presided over mass today. I needed that. The kids did fine at mass and earned themselves a mini golf outing. That went okay, and they probably wont ask me to go again until next summer.

Seeing all kinds of folk this week, very much looking forward to reconnecting with friends and family. (Perking up at the thought of the good in the people I know!)

Aspie redux, sort of a PS

I guess what worries me most about our boys is that they are cut from the same rough cloth as mom and dad, and that will leave them vulnerable to predators.

Doing my level best to teach them what I know, but their hardest lessons will be learned on their own.

And we're still getting schooled, anyway....

I wonder what dad would say about this world he's been gone from for almost 4 decades?

Believe it.....Or Not......

One of my biggest problems in the arena of human interaction is that I can be torturously slow.

I can't even begin to count how many conversations I've had with people that have started (with them saying to me) "Well, I *tried* to tell you......"

Usually said conversation is a result of me turning around and asking whomever I am talking to if they would please take that knife out of my back, and "by any chance, does it belong to you?"

People tend to take advantage of my good nature. One person ripped me off, and her co-conspirator threatened me with all variety of violence if I even thought of seeking recompense. (I let it go--the cost and effort of pursuing justice outweighed the benefits, and I'm sure that's why what happened, happened) Their PR campaign was impressive, well organized, and in the end, I saw I never had a chance.

Then there was another 'friend,' tangeantally related to the first two, who apparently saw 'Pigeon' written all over me and was quite incensed when I pointed out that her stories weren't adding up.

I'm trusting to a fault. Or I used to be.

Then there is a current situation that I'm dealing with; one friend tells me that she "told me so," even though she didn't really and should know me well enough to know that short, direct, precise language works best when talking to me, especially about things that matter.

Thinking about something that happened last week that obliquely relates; DH, kids and I were in Baltimore on our way back to our hotel, when we were accosted by a young man who first said that he had a question, wouldn't come any nearer....then said forget it and disappeared into the night.

Two mornings later, he showed up at our hotel looking for a free breakfast. I stared hard at him, because I recognized him. DH asked me what was wrong; I answered that we saw that guy the other night.

We had an extra breakfast coupon, and DH, maybe misunderstanding my perturbation, went over and slipped it to him. He got his hot breakfast and ate like a king. And was quite obvious about it.

He bothers me for a few reasons. His hair was cut close, even though he had a beard, leading me to think that there is something weird about this otherwise well-to-do looking guy in skanky clothes. Recently reduced circumstances? Drugs? Entitlement?

DH felt good about helping him, but I'm not sure we were right in helping him.

I haven't discussed this with him because I can't articulate my own misgivings. Just something about us looking like easy marks, and people taking advantage, because they can, and because we let them.

Thinking again of some one who tried to 'friend' me on FB, even though I know person harbors nothing but hate in said heart for me. But again, operating from what this person knew about me 'then', where does the blame lie?

I must have 'Welcome' stamped on my forehead. As time goes on, the smile leaves, and F*** Off is in its place.

I'm not bitter. Just amazed. Some people have no shame.

And they just keep on keeping on.

More power to them.

Saturday, August 29, 2009

Pondering Much

It's been a busy week and we are shoveling out. The kids are taking a breather in the other room while I think about what I want to say in a few short lines. Today's dad's deathiversary, and something with what strongly resembled his handwriting and no return address showed up in the mail this am.

I guess my puzzled silence concerned DH. "Open it, any idea who it's from?"

Turned out to be a very nice thank you note from Father M for dinner last month. He wrote us a lovely note, too.

Dinner was five weeks ago, and how funny that the note showed up today, of all days.

I'm okay. We've had a very busy week and will have an even busier week ahead as we finish cramming in all the activities we left to the last minute. I just finished up one project and have another waiting in its place (full speed ahead). And the usual stuff to sort out, too, of course.

School in T- 11 days. And we have something doing every day. Perfect.

Monday, August 24, 2009

Cleaning up

Ready to put an article to bed, start another one, and a fall job just blue-birded in. I'm having a chicken-and-egg problem with anxiety, but it seems like that's abated for now. Had to wait almost an our to see my GP on Friday, but I just turned out the lights and power napped while I waited.

A lot of mortality reminders lately, as if they were wanted or needed. A friend just lost his mother over the weekend. Another friend is watching cancer take one of her closest friends. A friend of ours expressed outrage for all the sickness he sees around him, but I don't have the wherewithal for outrage, not about that, anyway. Dad's deathiversary is Saturday, and I have spent most of my life without him. Was that fair? Well, life doesn't deal in fair. I feel cheated more for reasons pertaining to my kids than myself these days. My mom feels just plain ripped off; THIS is the time she is supposed to be enjoying with him. Not that she's not having her own good time (she manufactures fun), but get her in the right mood, she'll tell you exactly what she thinks about his not being here.

I can't believe it's been 35 years.

I can't believe I can actually type that AND remember back to that time.

His death still casts a long shadow. There are some things you just can't 'get over.'

Sunday, August 23, 2009

Add a Little Haiku to Your Day!

Writing done, edit in
progress; only need to cut
1K this go-round.

and best movie ever...

Saturday, August 22, 2009

The Other Reason I Want My Kids Included

I want them in plain sight so this doesn't happen to either of them...ever.

And this one just in:

Thursday, August 20, 2009

There's No Question That Doesn't Have An Answer

even if the answer is "because," "I don't know," or "why the hell not?"

This whole 'teachable moment' thing is an admirable concept. However, I am unsure of its practicality when it becomes an all-encompassing 24/7 endeavor.

I need to find other outlets. Clearly, my combination of strategies, while it works for everyone else, has ceased to work for me. And that's a problem if it's my party.

I need to finish stuff up, clear my desk, and consider plans B through z.....

Monday, August 17, 2009

My Life Is One Big Happy Teachable Moment

So we went to the township pool for the first time all summer today. It was too hot to walk, so I just picked G up from school, we made a stop at the 'little library' around the corner and went to the pool.

Since it was already after 4, people were leaving. The 3 of us hopped into the pool and were thrilled to have a nice swim. Or I took G for a tow, Nic swam. All was pretty uneventful until we got to the second hour. Nic was hanging with a bunch he knew from school and it seemed to be going okay. Then I heard him yelling--the way he does when he is ready to run off the rails.

I called his name. I heard one kid scoff, "Your mom is calling."

I jumped in and swam over. They didn't see me until I was nearly on top of them and they started to scatter. I told the girl closest to me. "He has autism. Do you know that?"

The others gathered in. "You mean like autism awareness?"


"You celebrate that month?"

I gave her a hard stare, and shared it with the rest of the group. "We LIVE it. Every day." I pointed to Nic. "He's stuck with this. All he wants to do his play with you guys, and swim, and have friends. You give him a hard time, and he doesn't know what to do. He needs help, not a hard time."

One girl asked him "Can you swim in the deep water?"

He nodded vigourously. She high-fived him.

And off they went.

He came back about 20 minutes later, scowling at me.

"That one girl still kept picking on me."

I sighed. "Nic, I can't fight your battles all the time. Some people just don't get it. You need to put bullies on ignore. You know?"

We got out of the pool and he was quiet while he dried off. Then he asked the question I've been waiting for.



"Were you ever bullied?" He looked at me with an expression that told me he wasn't expecting me to get whatever it was he was feeling.

I gave him a hollow laugh. "I was bullied a lot. I was beaten up quite a bit."

He gaped at me in something that looked like awe. "Are you okay?"

I chuckled. "I am now. I wasn't then."

"You should have ignored them," he told me.

"Hard to ignore some one who's punching you, calling you names." These are not places you want to go, admitting that you were once weak, powerless, a victim. BUT...I'm none of those things now, and he knows it. Which is what I guess made my admission so shocking to him.

He just doesn't see who I was.

But now he understands so much better that I know who he is. And that he will never be anyone's victim.

Because he's getting schooled in the big bad world.

But no one said ANY of this was easy.

Sunday, August 16, 2009

Apropos of nothing 2

The following was taken 20 years ago. I would go as far as to say we were all kids, but I was already a self-supporting adult for a couple years by the time this pic was taken.

I loved this time. I was glad to have it, but no way would I go back to it....

Saturday, August 15, 2009

7 Years Ago, Right About Now...

It was a morning like this, sunny, clear, not a cloud in the sky, and hot. The things I remember are the brickwork on the ground of the office park we were in, the way the green of the trees contrasted with the deep blue of the sky.

And the black hole that suddenly became my son's future.

I stood in front of the doctor's office, dialing two numbers frantically on my cell phone: home, and dh's work. Nic, then 30 months old, laughed and chased a butterfly through the square.

He hadn't changed. But my perception of his future did.

He was not yet talking. He was a lovely little guy--when he wasn't screaming about something. He was beautiful, bright, and still the little boy I loved.

With a label. And a future I had no idea how to plan for.

I spent many an hour crying, cursing, bargaining with God in the weeks that followed. Never in his presence. Never where he could see or hear me. I kept a church and state separation of my feelings and doings for the greater good of my family. As far as they were concerned, it was business as usual; therapies, outings, looking for a house (DH had just gotten a job out of state). And I've all but forgotten about a lot of that time. It was a lost weekend that turned into months.

Seven years post diagnosis, Nic is still the lovely little guy he was, now growing up. He still has a quick bright beautiful smile. He's strong and smart, and he has a good heart.

He has gone through a lot, but he continues to grow, and learn, and evolve. And he refuses to give up, be beaten down or otherwise be intimidated. He gets frustrated, but it only makes him work harder, push farther.

I could not have dreamed then what he would be now.

And he's not finished.

(Neither am I)

Thursday, August 13, 2009

And now for some Haiku

Divine Mister S
I will bother you no more
if you send me work

Kids do not listen
I have lost my patience now
Costco won't happen

Resumes be damned
They breed before my eyes and
I need a break now

Monday, August 10, 2009

Good recipe I just made up: Scallop Stuffed Baby Bella Shrooms

OK, started with a pack of baby bella 'shrooms, took, the stalk out, chopped the ends off, then minced the rest. chopped fresh rosemary, added 1/4 lb of thawed scallops (minced), maybe an 1/8 cup of bread crumbs, 1 T olive oil, mix stuffing, stuff 'shrooms, pop into a 350 oven, drizzle with x-v olive oil and cook for 20-25 minutes. Awesome!

Just a note on the scallops if you are using frozen--thaw most of the way through, but not completely, because you don't want them to dry out in cooking.....(but the olive oil should help keep a barrier to keep the moisture in)

Managing my Expectations

So I dropped Nic off for day 1 of his program with a song in my heart and a skip in my step. His friend B was there, as was his brother. Some one to sit with, and his friend, no less. Kewl.

So I was writing the blog I wanted to write in my head on my way to the office. It took me about a half hour to unwind and think hard about what I was going to say.

After all, what if I got here with a triumphant post and then got a phone call to pick him up?

So I sat tight. Went to get him at the end of the program. Good news, he was still in his seat, bad news, B & Bro were no longer sitting with him (but he was sitting with a couple other kids).

And oh yeah, he was perched like a bird in his seat, feet on chair, sort of facing backwards.

Not a screaming triumph, but not a train wreck, either.

A year ago he couldn't have done this. Maybe in a year he'll be awesome.

Sunday, August 9, 2009

Loves Me My Anonymity

We went to the Kindergarten Mixer at Please Touch Museum yesterday. They had an awesome resource fair, giveaways, and of course free entrance to the Museum.

It was a zoo. But it was a glorious zoo. And it didn't occur to me until this am that this is probably the first NON special needs freebie fest we've ever gone to.

What it means: I didn't know another soul outside of my own family.

Not STRICTLY speaking true--there was one or two people I knew, or at least looked familiar to me, but being there as 'private citizen' as opposed to N & G's mom (which is how I'm identified these days), I preferred to keep a low profile rather than draw attention to the fact that we were there. I think my family preferred that, too.

And the lack of accommodations mattered not--the kids were in the thick of things and having a blast. I was amazed that Nic liked it as much as he did. G was a bit overwhelmed by the crowds and noise, but he had fun, too.

So scratch the previous entry in a way. All the other stuff I beat my head against the wall make this kind of thing possible. That's why I do it. There is a payoff.

Sometimes the payoff is not immediately apparent, however. Especially when my older one starts caterwauling over the stupid Wii.

We capped it off by dinner in Manayunk. It was a pretty cool day.

Saturday, August 8, 2009

Just Because You Can Doesn't Mean You Should

So after I picked Nic up from his last day of summer playground (after I found his bike helmet dumped in a wheeled cart full of plastic crates, but anyway), it occurred to me that yeah, okay, it's fan-bloody-tastic that he can hold his own in the world of kids who don't have neurological issues (we won't get into psych--in fact, we'll not go there at all), BUT......

Because he can, does it mean he should?

All the stuff that gives me the greatest angst--the bus, basketball, even the township stuff in general--is all OPTIONAL.

Meaning, he will live and prosper just fine without any of it.

But again, living in the NT world requires that you play ball with the NTs--and learn all their crazy NT ways--even the bs is legit because they say so.

I'm reminded of Hugh Laurie's (love that man) quote: [on the difficulty of performing with an American accent] It's as if you're playing left-handed. Or like everyone else is playing with a tennis racket and you have a salmon.

The same can be applied to having autism and living in this world.

The bus is a done deal. Hopefully it doesn't cause either boy lasting damage.

On another note, G graduated from the IU yesterday, and it was kind of a happy/sad occasion. G had such a great time getting up and participating in the songs, full voice (4 years ago, Nic sat in the same ceremony, hand in chin, waiting to be done so he could have some cake). I choked up a few times because G's been with some of these kids for the last 3 years--his teachers have had him for as long.

And the other reason is that he was safe at this school. I know too well now what he is in for. I was SO naive when Nic transitioned to K 4 years ago.

Perhaps it's just as well I cleared the calendar for the next few weeks. I want the kids to enjoy life.

Because it's going to get very difficult soon enough....

Friday, August 7, 2009

August is the Cruelest Month

I could be referring to the late start of school this year, but I'm not. August is hard for me. Dad's 35 year deathiversary is at the end of the month, and Nic's 7-year dx anniversary is next Saturday.

Nic loves his number 7. And today is his half birthday.

In an effort to shake the funk that's descending, I am spending more time with the boys and appreciating how wonderful they both are. They are both sweet, smart, funny and beautiful. Yeah, okay, they aren't like everyone else, but that's what's so special about them. God broke the mold, both times.

I have plenty to keep me busy. I have a calendar to update, resumes to review, and about a thousand words I need to cut from the article I am working on. The article needs to be off my desk today. And I have about six months worth of correspondence to catch up on, and oh yeah, getting my phone expenses done (now over a year in collection) would probably be a good idea.

So the money hand off over the bike went off fine, and Nic took the life lesson better than I thought he would.

Sharkbait, the little catfish that came with Nic's fish tank, died the other night. He was a cool little fish and I am probably more bummed about his demise than the kids are.

After Nic's program next week, we'll have three weeks before school opens. Not sure what we'll do with it, but the way things have been filling up, I'm not all that concerned. We have a lot of good friends and good people in our lives. The boys have had a great summer, lots to do, and even if we lie low the next few weeks, it'll be good recharge time for them both for the year ahead.

Ahead for the fall: soccer, scouts, swimming, and I think they will both be taking canoeing lessons--kayak once they've mastered the canoe. I'm on the fence still about basketball, and I guess we'll wait and see how the bus works out.

I really do have mixed feelings about that portion of the program, but we'll see.

Thursday, August 6, 2009

Pilgrim, That's Gonna Cost Ya

I'm sorry, did I actually write here that summer playground was going swimmingly?


(ahem) k, so I drop Nic off this am when the head counselor accosts me with "I need to talk to you."

Any conversation that begins this way is usually fated to head due south.

"Um, okay?" Nic had headed over to the other kids but stopped in his tracks and looked sheepishly around at me. And all I can think is "oh, sh*t, what did you do NOW?"

So I hear a buzz of words, am able to pick out "bike," "accident," "tire knocked off," "stuff happens." I glance at a receipt shown me, dated Tuesday at a bike shop next town over for $21.40. I take the phone number proferred and say I'll work it out.

Nic throughout is hugging me, apologizing, and I tell him we'll discuss this later.

I get back into the van and start muttering to myself. How am I going to broach this conversation? DO I bring up autism? Well, no. Nic was just being a bonehead and he likes to crash into things. Sensory input or not, he knows better. And he was just in the damned pool, so don't talk to me about him needing input.

"Who are you talking to?" G asks from the back seat. I forgot he was there. I drop him off and start talking to myself anew.

By the time I get up to camp, I'm ready to turn this over to hubby. Who is not answering either phone.

I sigh, dial the other dad's number, get him on the line and ask "So okay, what did they tell you?"

It's not his son's bike, but his son was riding it. The other dad had in mind to hit G (dad I was talking to) for $20 and me for $50.

"I saw the receipt, it was for 21.40," I noted.

"I know, so I figured we'd split it," he said. "I was hoping he didn't get you for the $50."

I laughed. "My son's bike was $30 new and I got it for 10 used, no freaking way is this guy getting $50."

G laughed too. "Yeah, he thinks Tony Hawk gave it to him personally."

"Tell you what," I said. "I'll pay you at pick up today. I'll ask you to let me do this in front of Nic, because accident or not, things cost, you know? And this is going to cost him, and I want him to see how and why it works."

"Good idea, my son will be there, too."

We hung up. He wants to split it, but I'll cover it. I'm glad his kid was riding the bike, because otherwise I'd be dealing with the rip off artist. I figure the least I can do is cover the bill--he actually got the bike fixed.

Ah, Nic. Never a dull moment with you, kid.

Wednesday, August 5, 2009

Self Advocacy

My son, not quite 9 1/2, sat in on his first meeting with the school district yesterday.

His mission: to explain in his own words why he wants to ride the big bus.

He did fine; he was understandably nervous, looked to me a few times, and looked relieved when I clarified his position. The director from time to time would glance over at Nic and ask, "Is that correct?"

And Nic would nod vigorously, pleased to be part of the conversation. "That's right," he'd confirm.

The only difference between this time and all the other times I've discussed this with Nic is that there was another adult who is not dad in the conversation.

The end result: we're going to give it a shot. And cross our fingers.

This is Nic's first foray into the conversation about his life plan, but I figured it was relatively safe territory to start. Nic's first act of self advocacy came two years ago, when he punched a bully in the mouth.

This kid had been dogging him since K, and that particular day, he had another kid hold Nic down while he whaled on him.

And Nic hit him in the mouth. And drew blood.

I know the PC response is to be horrified, but I was pleased. Nic would never raise a hand to another kid, but I was so proud of him for having the wherewithal to defend himself. And he sent a crystal-clear message to anyone ever thinking about pulling this stunt on him again.

So, having him sit at the table, his big green eyes taking everything in, listening intently to the conversation (hey, it was all about him!), contributing appropriately, it's clear my handsome little guy is growing up.

Summer playground, meh, he's making it clear that he's tolerating it for my benefit. I think he'll like the program I signed him up for next week better. He's already pretty excited about that.

I think we are going to work the next few weeks on academics. I want him to hit the ground running when school starts.

Because he's already showed me that he is up to snuff on the social skills front...

Monday, August 3, 2009

Without a Net

So I dropped Nic off at summer playground a little while ago. I did some serious back-and-forth with myself over whether this was a good idea. He said so—after all, he is too old for G’s school, he tells me. He wants to hang out with kids his own age.

Well, G’s school is more expensive, but at least I know he’s safe.

Not that he’s not safe, BUT, always the danger of meltdowns, and he’s not sure what the deal is, never having done this before. Hopefully, he will be paying attention and let me know what he needs at the end of today to make the rest of the week work.

My stomach was in knots when I left him. Because despite his camo shorts and basketball team tee-shirt, he was looking pretty damned autistic this am. It happens when he is nervous. He blends better when he’s at ease.

I will be on pins and needles until pick up. I will be praying I don’t get a phone call. I will be praying he finds a friend or two to hang out with.

I wonder what it’s like to never have to worry about these things. I wonder what I would have fretted over if it weren’t for autism. Would I be worrying about what other people think of my kids? Would my kids be the ones who would run interference for the kids who needed it?

On a slightly different note, G wanted to talk to me about death last night. Hubby took the kids to see UP (again) yesterday afternoon, and this has been kind of haunting G a lot lately, the whole idea of going away and never coming back. I have not yet had this conversation with Nic, and again, the contrast between them is interesting.

I told him as much as I could, as simply as I could. It’s one of many conversations we’ll have. He is wise beyond his years, my little one. Yeah, I know what his IQ scores say, but that’s not the only intelligence there is. His emotional wisdom has some so-called geniuses (who are emotional pygmies) beat—and I’ll take what he’s got any day of the week.

Actually, he’s probably going to need me more in some ways than Nic does. Nic has the foundation now—he’s going places.

I just found out that G’s school is closed. Maybe he’ll be going to camp with his brother this week after all.

Sunday, August 2, 2009

Ignorance Persists (or why I am Warrior Mom)

I continue to be floored by how widespread ignorance is. This is emblematic of the kind of crap my kids deal with every day.

With all the autism awareness programs going on, you would think people would know better. And every day, I am reminded--firsthand, by my own experience in our own little corner of the world--how very far we have to go.

It's no wonder I've become the person I am.

The good news is that my boys will be tougher than anyone or any problem anyone can ever throw at them.

The bad news is that at 9 and almost 6 years of age, they are fighting on the front lines.

This is not something I want for them. But by dint of their situations, this is who they are.

Saturday, August 1, 2009

Old Friends (Rock)

Just wanted to jot a few lines about the awesome day my boys had yesterday. Again, friends we have not seen in ages, mom asked what the right things to tell her boys were, and I said 'wing it, answer questions, but if they don't see a difference, don't bring it up."

So. Afternoon spent playing on a swing set in the rain, shooting each other with super soakers, playing Wii, watching vintage Tom & Jerry cartoons while moms play catch up.

Nirvana? Pretty damn close.

Summer has been AWESOME. :D And we are not done yet!

(Now back to my regular scheduled angsting lol)