Today is the first full day of Jon’s summer vacation. He has two weeks of downtime before his first camp (Summer Strings at VCU). By 8:30 he had already asked me what we’re doing “exciting” today. I showed him the list of phone calls I need to make and the pile of laundry I need to do. He didn’t think either of those were sufficiently exciting. When I offered to share the thrill-a-minute task of emptying the dishwasher, he muttered something about cleaning his room and went off to find his own excitement. Give me strength.

Jonathan and I saw my surrogate daughter Kaitlyn in CYT’s production of Willy Wonka last night. This was the first CYT show we’d seen and oh my gosh were we impressed! Talk about professional! This was Kaitlyn’s first CYT show and while I may be slightly biased, the child is really very talented. Lots of kids can sing and dance, but Kaitlyn can also act and emote* and become a character in a way that you don’t see in many kids. Mark my words, she’s gonna be a star!

There were 95 kids in the show I think they said, from newly graduated high-schoolers all the way down to some Oompa Loompas that appeared to be barely past kindergarten. This was not your typical school play type production though, these kids knew what they were doing. The acting was incredible and the choreographed numbers all went off without a hitch, which really impressed me with that many kids on one stage. I highly recommend seeing it, especially if you have kids of your own. The Oates Theater at Collegiate is quite large and it was a full house last night, fully half of the audience was kids and they all seemed to love it as much as we did!

Thank you to everyone that responded to my post about legal planning for special needs kids. I received some good advice and recommendations to other resources so I’ll be giving this more thought and hopefully figuring out a workable plan for our family in the near future.

Jake. Jake, Jake, Jake… Sorry for the abbreviated post yesterday. I became a bit verklempt and had to stop. I’ll write more on that in the next day or so.

And finally, this made me laugh this morning.

* I first typed that as “smote”…Kaitlyn, I know a few people that could use a good smoting!


June 8, 2009 at 11:12 pm 2 comments

Hold On To Yourself

It’s happening again. Jake is having a rough time. Screaming, meltdowns, little patience, more manic, furious when told “no” or denied something. Toileting skills out the window, three, four, five accidents a day. Pouring liquids out onto the carpet in front of his spot on the sofa; a weird, ritualized sort of behavior from way back that has resulted in a permanent black, mildewed stain there. And screaming, did I mention the hair-raising, bloodcurdling, migraine-inducing screaming?

Last week he squeezed my arm when upset about something. A couple of days ago he shoved me and later slapped my arm. Today he pinched me on the shoulder. None of it enough to cause any real damage, though I suspect I’ll sport a bruise from the pinch today, but signs of aggression that we haven’t seen in many months.

Even more distressing to witness, he’s begun hurting himself when upset again, too. Slapping himself in the face, punching himself in the head. Not all the time, but it’s gradually increasing to where it’s several times a week now. As long as I live, I don’t think I will ever stop feeling horror and heartbreak every time Jake becomes self-injurious. How terrible do you have to feel that you slam your own head against a wall? How frustrated must you be that you’re compelled to punch yourself full-force in the head? And how the fuck am I supposed to protect my child from himself??

June 8, 2009 at 3:40 am 4 comments

After You’ve Gone

My friend Janine posted a great review of a book on her blog. Go check it out. It’s okay, I’ll wait. Tap, tap, tap…

I know we need to take care of this. I freaking know, okay!? But just the thought makes me want to crawl under my bed and not come out for a year or more. The thing is, when you have a special-needs kid the very idea of leaving them behind and who will care for them is enough to paralyze you with fear.

Nobody else is going to understand your kid like you do, especially when that kid is basically non-verbal and unable to communicate in a functional way. You learn to recognize subtle clues, behaviors, gestures, that help indicate what might be going on but even then, half the time it’s a crap shoot and you’re left playing 20 questions. Does your head hurt? Does your tooth hurt? Does your tummy hurt? Does your foot hurt? Does anything hurt? Do you need to go to the bathroom? Do you want to lay down? Do you want to watch a video? Do you want to play stairball? Do you want to color? Do you, do you, do you…on and on and on…

We don’t have a lot of family and to be honest, there is nobody on either side that immediately comes to mind as ideal guardians in case of Joe’s and my death.

My mother is the only family member that knows Jake on a personal level and is familiar with his history, what’s going on in his life now, his quirks and anxieties and fetishes. And even she isn’t intimately involved, she couldn’t be. She’s never attended an IEP meeting, she couldn’t begin to tell you about the various therapies and theories and treatments surrounding autism. She travels for months at a time for work so she’s unable to be involved in the boys’ lives on a consistent basis. And she’s 60-years-old and single. I can barely do this half the time and I’m 34 and have a supportive and involved husband helping me out. What? Oh okay, 36. No? Fine, barely 40, that’s as high as I’m going! My point is, I know that she would kill herself trying but I don’t feel like it would be fair to ask that of her.

So because we don’t have any real options, I keep ignoring it and praying that it will never be an issue. That always works out, right? Right? Guys…?!

How many of y’all have all of this stuff taken care of? Wills in place, guardians selected, etc.? And especially those of you with special-needs kids, how did you go about choosing the best guardians in case of your death? And can I use them too?

June 4, 2009 at 9:45 pm 6 comments

It’s Official

Jonathan won’t be returning to Lourdes next year (the school, not the small town in France. not that he’s going there either.) I notified the school yesterday and managed to get through the conversation with the principal without breaking down openly. She was very kind and understanding and supportive, as always, and said that of course we had to pursue what was best for Jonathan, especially if he has a gift that can’t be nurtured at OLL.

She offered that if it didn’t work out at the new school we were always welcome to return. Which was nice to hear because after reading this book (Testimony, Anita Shreve. Eh.) over the weekend about some high school kids drinking and then doing something stupid which ruins their entire lives, I’m no longer worried about someone being mean to Jon but about someone offering him alcohol or drugs and him doing something stupid which will ruin his entire life. I’ve got to stop reading.

Coming soon, the sinkhole that ate our driveway…

June 3, 2009 at 12:11 am 3 comments

Baby, You’re the Violin

Jonathan’s final performance of the season with Sinfonietta was Friday evening at Pocahontas state park. They have an outdoor amphitheater setup with wooden bench-style seating for a couple hundred, then lawn seating (bring your own blanket or chairs) for a couple thousand more.

They youth orchestra groups performed first, and then the Richmond Symphony performed so we got to stay for that concert as well. My mom kept Jake for us so Joe got to attend and I didn’t have to play single parent for once. We even brought a picnic dinner to enjoy after Jon’s part of the concert was over.

It was a very rare treat to get a night out, just the three of us, especially for nearly five hours like that and oh my gosh was it wonderful! I know looking after Jake can be demanding and exhausting so I don’t ask my mom to do it very often, but we’re so grateful that she allowed us to have this special evening with Jon. Thanks mom!! 🙂

Here are some photos…we shot some video as well, I just need to figure out how to get it from the tape on to the computer now!

p.s. I’ve added a widget over there —> on the right side of the site where you can subscribe to receive a daily email when I’ve posted something new here! Look at me with my bad, blogging self!

May 31, 2009 at 10:05 pm Leave a comment

Doin’ Time in Babylon

Jonathan finally received his grade for his Hanging Gardens of Babylon project, which many of you know that we…I mean he spent a very long weekend creating for his year-end History class project.

For those of you unfamiliar with this project, Jon’s History class’ final project was to create a 3D model of something from one of the time periods they studied this year. They submitted three ideas and the teacher selected/approved which one they would do.

Jonathan did NOT discuss his selections with us before submitting them. When he came home and announced that his project would be the hanging gardens of Babylon, I was taken aback. I asked what he knew about the hanging gardens. He said, “Nothing really.” I asked how he thought he might recreate them, how he envisioned this project. He had no clue. All he could offer was, “I like to think big!”

I strongly suggested that next time he might like to discuss large projects such as these with his father and I before-hand.

Here’s the finished model:

We…I mean he received a 98. The teacher is one of those that doesn’t give a 100 because she feels that there is always room for improvement somewhere, so the highest grade possible on this assignment is 98. I’m so proud of us…I mean Jonathan!

May 31, 2009 at 6:54 am Leave a comment

Mowing the Meadow

Our lawn mower died. It was second-hand to begin with, nothing fancy and probably underpowered for the size of our lawn and the slope of the front yard, but it did the job. We didn’t have the means to run right out and buy a shiny new one so we’ve been getting by and making do to keep the front yard presentable.

We borrowed a mower but it sputtered and choked and Joe only managed a couple of passes across the lawn . I came home the next evening to discover a wonderful neighbor mowing the lawn after witnessing Joe struggling with the borrowed mower the evening before.

The lawn was just getting unruly again and I was wondering who to impose on by borrowing their mower when a gentleman pulled up one afternoon as I was getting ready to leave the house with the boys, looking for work and asking if he could mow my lawn. We talked for a few minutes, he’s from the area originally and just moved back, hadn’t found a job yet, etc. It needed done, he needed the cash, win-win! I told him he had a deal, that I was getting ready to head out, and gave him my name and cell phone number in case he needed to reach me. He asked when I would be back so he could get paid and I told him I would pay him now, before I left. He looked surprised, like he wasn’t used to being trusted. He did an amazing job and left a home-made flier advertising his availability as a handyman as well. I’ve saved it for when we’re ready (meaning have the money) to do some repairs that need done around here that are outside the range of our skills (meaning more advanced than changing a lightbulb or painting a wall).

All this time, the back yard hasn’t been touched. It’s a bit overgrown, to put it mildly. The grass is nearly 5′ high in some places.

For reference, thats a 6' fence surrounding the yard.

For reference, that's a 6' fence surrounding the yard.

I’ve begun referring to it as “the meadow”. Joe prefers to call it “the savannah”, which makes me fear that there may be a lion under the trampoline, just waiting to pounce on Bella the wonder Chihuahua at the first opportunity. I think Deezle would totally throw her under the bus, or under the deck as it were, to save his own ass should a pride of wildcats attack. Or some angry meerkats. What is a group of meerkats called? And is it meerkats or meerkat? Meerkitties?

Deezle emerges from the meadow with a shredded stuffed animal.  And probably a couple dozen ticks.

Deezle emerges from the meadow with a shredded stuffed animal. And probably a couple dozen ticks.

Every time I look into the backyard, I hear the theme from Little House on the Prairie and I long to recreate the intro where the girls are running through the meadow. Preferably while wearing something like this.

Easter 1976

Easter 1976

This is me and my sisters, I’m on the left. Did you have one of those mothers that had a compulsion to dress you and your siblings in identical clothing? In identical, bizarre clothing from eras gone by? In identical, bizarre, handmade, clothing from eras gone by?

Here’s what I remember about those dresses. They were heavy and very hot, especially with the separate eyelet pinafores on top. And my mother insisted that to be historically accurate, we had to wear the hats forward so that our faces were completely shaded by the…I don’t know what you call it…the brim? So we had tunnel vision and couldn’t see a damn thing within three feet of us in any direction. In mom’s defense though, they really were gorgeous dresses and she put a lot of time and effort into them!

We bought a new lawnmower yesterday and Joe is working on taming the backyard today. I’ll share after photos soon. If he’s not trampled by a heard of elephants or anything.

May 31, 2009 at 1:51 am 1 comment

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