Who’s Your Hero?

I went to Ryan’s parent-teacher conference this morning.  For the most part he got glowing reviews.  He raises his hand, he answers questions, he asks questions, and he understands how to solve problems.  Clearly I did something right, right?

His communication teacher (BIG props to Mrs. Schreiber at ENMS) shared his Bio-Sketch on his personal hero, his grandmother.  I called and read this to her, then transcribed it into an email.  While I understand his logic, I can’t help but shake my head that my own efforts in his life remain unrecognized.  Read on:

BIO-SKETCH                          3/5/09
 
Ryan Jones
 
Now at sixty-five years old, my grandmother is my hero.  She is currently in Florida escaping the northern coldness.  Her name is Darlene Kempert, but I like to call her Grandma D.
 
The reason she is my hero is because she shows me that it is alright to make mistakes and be different.  She’s shown me this in her actions.  When I had an ear infection she told me to use a q-tip, then the doctor recommended against it.  Even when she made a mistake she did the right thing afterward, in this case she got me a hot pad to dry out my ear cannal.  Somehow I could barely open my mouth, chew, drink, or even speak because of the infection; first she gave me jelly bagels, (not a good idea) then tried easier to chew meatloaf.
 
So for all she’s done I say thanks Grandma D, for help with the ear infection, for letting me make cupcakes, frost them, and sprinkling them.  But most of all, thanks for paying me for working and allowing me to play on the computer.
 
grade:  Very Good, 20/20. 
 
 
I guess he forgot the night his fever spiked at Shriners and I had to wake up every half hour to drip an ounce of water into his mouth so the nurses didn’t have to put an IV in his jugular.  No, that wasn’t hero-worthy, but meatloaf was.  Yeah, I’ll remember that when I’m writing his college tuition check. 

All Jacked Up

Okay, so here’s the scoop.  The last two days I’ve been battling the school district (Norristown Area School District, specifically) over transportation issues for the boys.  Since we moved from East Norriton to Norristown, we decided to do the honest thing and let the schools know of our new address.  (We were slightly proud of the fact that we went from renters to taxpayers who now made an actual contribution to the school district’s coffers.  We’re also paying through the nose for that privilege; our property taxes are over $3K per year.)  I asked for—and got, amid much ballyhoo, begging and pleading—a waiver to keep Ryan at his middle school because with the new address, we were now zoned for a different school, but it didn’t make sense for him to have to change schools with 6 months left in his middle school career.

I found out on Wednesday afternoon that honesty isn’t always the best policy.  Because we were now zoned for a different middle school than what he was attending, Ryan was “no longer entitled to transportation services”.  Tell me where that makes sense.  We now pay taxes that contribute to the cost of transportation, yet we’re “not entitled” anymore. 

I’d say that nasty emails were exchanged between myself and several employees of the school district—in particular, Peter Matticola, the Transportation Manager for NASD—but I was the one doing most of the writing.  After I launched my first heated email on Wednesday afternoon, on Thursday morning Mr. Matticola passed a message to Ryan’s school to pull him out of class to call me and say he was not allowed to ride his bus anymore.  Anyone who knows 13 year olds will have an idea that standing out from the crowd is NOT a good thing (not to mention he was enjoying the project they were working on in science class), let alone fearing he did something wrong when he was called to the office, AND having to call his mother with that bit of information.  Mr. Matticola (and I use the term “mister” loosely) employed poor judgment and blatant unprofessionalism (not to mention immaturity) when he decided to delegate his job to a 13 year old boy, and for that, I expect an apology.  That and $.85 will get me a cup of coffee.

The second bit of this story comes about because the school district also required that Alex change his bus.  Anyone who knows jack about autism knows that these kids thrive on consistency.  I’m lucky in that Alex adapts to change well (probably better than I do), so after the initial “Why?” (“No, honey, it’s nothing you did wrong”), he accepted the change in his morning routine fairly well.  However, the bus meets him at an exact point in the morning when no one is available to stand there in the cold and wait for it to get there.  On any other day, I’d have left for work already; John’s in the shower; I’m not sure I should trust Ryan, at 14  (on Sunday) to get his brother on the bus.  I can’t let Alex sit in front of the house alone; he’s already eloped once.  My only option is to wait with him and go to work half an hour later than usual, which puts me in the teeth of Norristown morning rushhour.  I’m his mom so I’m going to do what I have to do, but nobody said I had to be happy about it.  Fortunately his “new” bus driver, Danielle, is a sweetheart and I’m happy to see her again.  She’ll give us an extra 5 minutes if I’m late getting back to Norristown after picking Ryan up at ENMS because he’s “no longer entitled to transportation services.”

No one said I have to be quiet about this.  I copied in Carl Rotenberg of the Times Herald (but got no response) on the emails I exchanged with officials at NASD, none of which was Peter Matticola;  he never returned a single one of my emails.  (Coward.)  I let Ann Rohricht know that I want Matticola to apologize to Ryan for putting him in that awkward position; of course, I’m also not holding my breath expecting that to happen any time soon.  No one has yet explained to me WHY this was such an issue.  What was the problem with the boys staying on their original buses?  If it’s just policy, shouldn’t someone audit the policy for COMMON SENSE?  Had I been dishonest and NOT reported that we’d moved, no one would’ve been the wiser and everything would’ve remained status quo through June.  But no, I did the honest thing. Foolish me.

This is what happens when a school system preaches intolerance of bullies but won’t practice that same philosophy.  We were bullied into this change and no one has yet explained what purpose this change serves.  We weren’t asking for anything special, and keeping the status quo wouldn’t have cost anyone a dime (except me; I sat for 20 minutes waiting between Alex’s bus arrival and Ryan’s, before I drove the boys home to Norristown; for those 20 minutes, I read aloud to Alex; we’d just started Harry Potter and the Sorcerer’s Stone on Wednesday). 

Next time I’ll do the smart thing.  I’ll lie.  Isn’t that a great lesson to teach one’s kids?  Honesty gets you nowhere, but lie and you get what you want.  Thank you, Norristown Area School District, for making me wish we’d gotten a bigger house and paid less in property taxes in a different school district.

Kids

Conflict with one’s kids is nothing unusual.  I think of it like the plates of the earth shifting and causing earthquakes.  It’s just a part of growth. 

This morning I had to wake the boys for school for the first time in nearly 2 weeks, since Christmas break started.  I chuckled a little to myself when I flipped the light on in Ryan’s room just as he said, “No, don’t!”  (Too late.)  I laid Alex’s clothes out for him because I knew, much like me, he wasn’t going to be mentally awake enough to do it for himself.  (I at least had a shower slapping me in the face first to help me wake up.)  When it was time to come down for breakfast, Alex still insisted he didn’t have to go to school, until finally we came toe to toe.  It’s an interesting proposition, facing a 12 year old who’s got two inches on you, but I’m the mother-person here and I’m supposed to be in control.  It was still slightly intimidating, looking up at him as I let him know who’s boss, but I wasn’t about to back down.  After all, I’m the mom. 

Of course, this all put me behind schedule.  I would have left on time if it hadn’t been for that slight head-butting detour, but as I walked out to the car, it occurred to me that I’d bet Kelly Preston would give anything for one last confrontation with her son Jett Travolta, who died last week.  I can’t fathom what it must feel like to lose a child, so my heart breaks for her and her family.  He was only here for 16 years, and looking at my 12 year old towering over me, I know just how fast the time goes.  It seems like yesterday they were watching Sesame Street and eating sandwiches with the crusts cut off.  Now they’re raiding the refrigerator and complaining that there’s nothing to eat.  Or like Ryan, they’re cooking their own dinners.

CNN had a lovely pictorial of Jett, and as much as I may have my own opinions about scientology and autism, my heart goes out to their family.  Jett looks like he was a handsome, likeable kid.  I don’t want to have to imagine what they must be going through now that he’s gone.  When they turn a corner and expect to find him there, and they don’t.  When they open his bedroom door and nothing in the room has been moved.  When they wait to hear his voice, and they don’t.  I hope they’re able to find peace in their hearts soon. 

When Alex stormed out of the kitchen with his breakfast, I felt good that I had a chance to talk to him this morning, even if at the end of it all, he called me “stupid”.  (I know his word choice wasn’t in context.  He “TV-talks”.)  This afternoon when his bus arrives, he’s going to walk down the bus steps and see  me and smile, and I’m going to love every minute of every fight or every laugh we’ll ever share because I’m grateful to God that he’s here.

Special Olympics Oath

(For those looking for my post on Baseball 101, check the archives under August 26th.) 

I was cleaning out my desk this morning when I found a request for a donation from the Special Olympics.  Even though Alex hasn’t attended the games in a few years, I donate whenever I can, just because watching those kids giving everything they have for their sport brings a tear to my eye.  I wish I could be that tough. 

The other day I was thinking about a friend of mine who has 4 kids, none of whom has a single disability.  (I know 2 of her kids from the boys’ day care center, and they’re fantastic; honors program, extremely personable and community-oriented, like their mom.  Everyone who knows them thinks the world of them.)  I envied her a little; she’ll never have to think about an IEP meeting or making sure her kids are in the best possible school district because some school districts are better than others when it comes to special ed.  Around here, all the schools are terrific, I won’t deny that, but not all have an autism support program, so the ones that don’t will farm kids out to neighboring school districts.  If Alex had to ride the bus for an hour one way, he’d be one tired dude at the end of the day.

Anyway, part of me is jealous when I think of Shelly and her four perfect kids, but another part of me acknowledges that it takes someone different to raise a child with challenges.  (Or children, like my friend Carol; her two both have autism.)  I suppose I should feel special that God chose me for this job.  Someone once told me He doesn’t give us more than we can handle, and a lot of times I’ve thought He’s seriously overestimated me.  But the boys’ challenges have made me someone I wouldn’t have been if I’d had normal, “perfect” kids, and that’s okay.  It’s opened my eyes to a world I wouldn’t have otherwise known about, and really, it’s not a bad place.  You meet a lot of terrific people, being a parent of a challenged child. 

It’s why I feel like I appreciate the Special Olympics oath more than some other parents might.  “Lord, let me win, but if I cannot win, let me be brave in the attempt.”  (Some versions of the oath take out the religious connection but I kinda like it that way, if that’s okay with you.)

Success!

I had to post this because I’m just so excited!  From PA House Speaker Dennis O’Brien, via the ASA Loop:

I am proud to report that the House of Representatives today made a several small but fundamental improvements to House Bill 1150 that will strengthen its scope of mandated coverage for autism services.  I can now say in confidence that House Bill 1150 is the best autism insurance reform bill in the country.

This success was made possible by the tireless efforts of hundreds of autism advocates from across the state and beyond who made their voices heard here in Harrisburg.

With your full support, I offered an amendment to include in this legislation precise definitions of mandated care.  These definitions ensure than the bill will cover essential autism services, including those to prevent regression.

The House heard your voices, and accepted my amendment unanimously.  In accordance with my agreement with Senate leaders, the Senate is expected to concur with my amendment and send the bill to the Governor Rendell for his signature in the next few days.  Thank you all – this bill was a long time in coming, and we could not have done it without your support

-Denny

What I did on my Summer Vacation

Today, my schedule went into a blender.  School is out.  God help me. 

I’m ducking the experience of the first full day out of school by going to a conference tomorrow, so John’s going to be home with the boys.  Most of the time they behave differently for him than they do for me.  With him, they’re not quite sure what to expect, so they’re usually on their best behavior.  For me, they know they can get away with a lot so they get noisy, pick fights, roll around, throw things, and generally destroy their room.  Hey, if you put two elephants in a 10-foot square enclosure, what do you think is going to happen?  (The key reason why we’re looking for a house.) 

What pains me is knowing that their summer vacation, the way I knew summer vacation, is actually about 2 weeks long, one week in June and another in August.  Life is so much different than it was when I was a kid.  We SO looked forward to summer vacation, and then once it was upon us, we sat around bored, looking for something to do.  But that was a good thing…unless you made the mistake of complaining to Mom, which usually got you sweeping duty or laundry to fold.  Most of the time we spent our summers outside, playing with friends (I was good at wiffle ball, darnit!) or discovering the world around us, which amounted to a block or two, as far as we were allowed to wander.  I tried for years to climb the mulberry tree on the other side of the street, at the edge of a vacant lot.  It’s how I learned that I suck at climbing trees.  But the lot served as our playground.  We wore ruts in the ground, going to the same old places over and over, playing games, making up stories.  Maybe that’s where my proclivity for writing was born, on summer vacation.

My kids will spend most of their summer vacation at Variety Camp.  I can’t say that’s a bad thing; they’ll do more at Variety than they would if I were home with them all summer.  They’ll play tennis or other outdoor games; go to the pool at least 3 times a week; take trips off-site; have barbecues and parties; sing songs; meet other kids, the majority of whom are disabled but that just gives the “typical” kids a better understanding of what it’s like to have challenges to overcome.  I’m SO looking forward to Alex being around kids with different abilities.  He’ll be forced to communicate with them on their level, and it’ll expand his speech.  (I adore his school classmates, but you can’t learn from someone who thinks just like you do.)  Ryan gets to learn from different perspectives.  Over the last two summers, they grew a lot.  If I was a stay-at-home mom, they’d probably spend the better part of their vacation in front of the TV, vegging out.  (We didn’t have TVs with cable in our rooms when we were kids, either, or else that might’ve been what I did too.  We had 1 TV in the house and we all had to agree on what we watched.  Except Sundays when Dad watched football.  Then you either learned to love it or you found something else to do.  More than once, Pete and I tried to convince Dad there wasn’t any football on that Sunday.  Strange that he never believed us.  On the other hand, was football better than endless Abbott and Costello movies?  You be the judge.) 

Next week, the boys have a full week in transition:  no school, no camp.  I’ll be working remote that week, and loving every minute of getting to sleep ’til—gasp!—6:00!  Woo hoo! 

Don’t laugh, God

I think I’ve finally come to the conclusion that my baby days are over.  It’s a hard idea for me to accept.  I’m 41 and it’s not like I can’t have another baby, but I also have a 13 year old and an 11 year old (with autism).  Throwing a new sibling into their lives would…come to think of it, it wouldn’t do much.  They’re boys.  It’s not like they’re going to babysit the little one the way I did when I was 12 and Karin was born.  They’d be interested for a while, until the first night feeding wakes them from a sound sleep.  It probably wouldn’t.  The Conrail freight train goes by our apartment every night and they never hear it.  There went that idea.

But aside from that, I’ve finally accepted that the only babies I have left to create will be on paper.  Heck, I’m taking Kara from near infancy to adulthood.  (And I don’t have to put her through college; with any luck and talent, she’ll put Ryan through college!)  The rest are all born in my head, mostly fully grown, and it’s up to me to get their lives down on paper so the rest of the world can meet them.  When I finish the last edit is when I let go and release them to make their own way in the cold, cruel world.  Good luck and God bless.

I’m sure most of my VFRW chapter buddies would agree, writing is a lot like childbirth, only it takes longer and it hurts more.  If it doesn’t hurt, it’s not good enough.  We have to pry these emotions out of ourselves and write them down whether we want to or not, because it’s going to have to happen if the story wants life.  We take these “babies” and love them and nurture them, and then we set them free and hope we’ve given them the strength to develop a life of their own so they can touch other people, make people feel and think and see things they wouldn’t have, had they not met our “babies”. 

My cousin sent out a letter when her kids were born, saying “Today M and I became parents”.  I always thought that was a foolish, romanticized view of childbirth, and for a romance writer, I don’t see romance in a whole lot of things in this world.  Yesterday someone asked about the “Sex and the City” movie, and I said that I think there’s no connection between marriage and romance; people who are happy should leave well enough alone.  The same, I think, fits for me.  There probably won’t be any more babies in my future, much as I loved being pregnant.  Now my births will all be two at a time, to a hero and heroine, and I can’t say I’m going to love them any less than the flesh and blood people who call me Mom.  (Except they won’t leave their underwear on the floor.  Well, maybe they will, but only because that’s what they’re supposed to do.)  🙂 

Happy Mother’s Day

Sunday is Mother’s Day, as anyone with a television set knows.  I’ll be at my mom’s on Sunday (for a short time, before I hit the road to go home) so I don’t have to call and say Happy Mother’s Day. 

One of the jewelry companies has a new commercial for Mother’s Day, and I think it plays off the Bud Light “Dude” commercials (which I happen to love).  It shows scenes from average life with someone saying “Mom” in one way or another.  The best is the last scene, with the young man on a cell phone.  You can’t see where he is, but he’s got this stunned, amazed look on his face, and he very quietly says, “Mom?”  Then the camera pulls back and you see he’s sitting in a hospital room beside his wife, sitting up in bed with a newborn in her arms.  The wife looks at the baby with a gentle smile and says, “I’m Mommy.”  Geez, I’m sitting here typing about it and I’m crying.  🙂 

Maybe I tear up because it never happened to me like that.  I used to think all that sentimental stuff would be really nice to experience, but I never got it, so even when I see it happen to someone else, it doesn’t quite feel real.  (Or maybe it’s just jealousy filtering my vision of things.)  My ex faced parenthood like it was a dentist appointment that went on for 18 years.  He wasn’t all that interested in my OB appointments unless it gave him an excuse to take a day off from work, and while I was in delivery (both times), he had other things on his mind.  (I was in labor with Ryan for 20 hours.  He disappeared for 4 of them, saying he was going to grab something to eat at BK.  The nearest BK was 5 minutes from the hospital.  With Alex, I had to call him to tell him to come back to the hospital because my labor had gone active.)  He enjoyed the attention of bringing the boys home, but after that, the majority of the work was all mine.  I made a point of taking the boys for their baths at 7:00 every night so he could watch “This Old House” in silence.  God forbid we didn’t.  A friend called one Friday night to invite me out shopping, and I asked him if he could watch the boys so I could go.  (The first time I’d ever asked for such an opportunity.)  He treated it like he was doing me a favor–for which he expected favors in return–instead of spending time with his children.

I suppose in a way he tried to be the best father he knew how to be, considering his own father was a train wreck in sneakers.  When your father is an abusive alcoholic, being a neglectful, self-centered passive/aggressive is a step up, right?  For a long time I was mother and father to the boys.  Even now, when the boys go see their dad, I’ve noticed they’re not entirely happy about it, which is odd when you consider I’m tougher on rules than he is.  His battle cry is, “Go ahead, do what you want.”  I’m a little too soft on them sometimes, myself, and I realize that, but at least they know who they can talk to who will listen to them.  Dad is for getting out of Mom’s hair twice a month.  It’s more than a little gratifying when the ex’s car pulls up at our meeting spot and both the boys say, “Awww!”

So Happy Mother’s Day to all the moms out there.  For all we do, one day a year doesn’t seem like enough, but we’re used to doing without.  To watch our kids sleeping at night, knowing they’re safe and content and they have what they need, it makes every day feel like Mother’s Day.

Sunrise, Sunset

It’s happening.  I knew it was coming and I knew there was nothing I could do to stop it, but now it’s really happening and I have to face the fact. 

My son has girls asking him out.

Ryan came home yesterday and told me, “I think a girl just asked me out.”  Let me back up a little.  He likes to wear what we call “smart alec” t-shirts; the kinds with snippy sayings on them like “How many losers does it take to stand there and read this t-shirt?  One:  YOU.”  Apparently this girl had read his t-shirt and they talked about it, and then she asked him what his favorite movie was so he answered, and THEN she said, “We should go see a movie some time.”  I don’t know what his answer was–until this minute, I didn’t think to ask–but he asked me, “Did she ask me out?” 

Of course, I had to tell him yes.  My first thought was, “Holy geez, times have changed.  When I was 13 I wouldn’t have DREAMED of asking a boy out.  Attagirl!”  I even told him so.  To put one’s hopes out there in public to be stomped on is a risky proposition, and the fact that she saw a goal and went for it, risking failure and possible heartbreak and humiliation, deserves applause in my book.

But this is my kid we’re talking about.

I wasn’t allowed to date ’til I was 14, but apparently no one was interested enough to ask me ’til I was 17.  (And we won’t go into that.)  Ryan seems to be suffering a similar self-esteem issue that I had, in that he can’t figure out WHY this girl would want to ask him out.  I told him, “You’re cute, you’re smart and you’re funny.  What’s not to like?”  I then reminded him about how he’s been a charmer since he drew his first breath.  The nurses in the nursery were all ga-ga about him.  “Ooh, look at those big blue eyes!”  I’m lucky they brought him back to my room; they were having too much fun watching him watching them.  (Of the 9 or so babies in the nursery, when it came time for visitation hour, he was the only one awake, and he just laid there, looking around, watching the world around him.)  He still can’t figure out why a girl would want to go out with him. 

God help me, I think we have to have the “birds and bees” talk soon.   I have friends (and my sister) with little ones.  They talk about Sesame Street and diapers and preschool.  I’m trying to screw up the nerve to figure out where to start this conversation. 

It’s just like in Fiddler on the Roof:  “I don’t remember getting older; when did they?”  <sniff, sniff>