Rethinking, Part II

I can't linger here long, since I have to get dressed and herd the boys out to church, but the events of the last few days bear noting.

Thanksgiving at my brother's was awesome. The kids did great and had a great time with their cousins. I remarked to hubby that my family probably didn't notice, because no one notices anything unless something has gone wrong or property damage is somehow involved.

I reminded him we need to catch the boys--particularly G--being good.

We had city jaunts, too. We spent the afternoon in Philly after our clinical appointment for both boys--and they didn't tell me anything I didn't already know about either of them. But we had a fully satisfying walk across town and by the river in the afternoon, pointing out the people practicing for the next day's parade and looking for new places to explore. We found a couple, too.

On Friday we went down to Baltimore for our annual pilgrimage to the B&O RR museum and met up with our friends. It was a fractured visit with K, but the kids had a great time and we discovered more places to visit, and added more places to see the next time we visit. The boys had a blast.

Which brings me to the question I will bring with me to church today--considering how well the boys are doing, how hard should I push this neighborhood association thing? Is walking away the right thing to do? Or is getting my heart ripped out repeatedly a pointless exercise that will be absolutely lost on the people I need to reach.

Part of me says, "No point. You will never reach them."

My niggling little inner voice reminds me: "You might reach one."

Off to church I go. I will be waiting for an answer....

ANSWERED

I needed a break, so found myself out in the woods, and found myself in a similar place to where I was, 8+ years ago, walking, crying, bargaining with God. Part of it, I think, arising from the committee meeting, where I knew Nic was discussed when I left, sobbing that it was not fair, and thinking that on his hardest days, when HE is sobbing that it's not fair, that this is what he is talking about.

What's not fair is the fact that this "weird," "annoying" kid is really neither, that he has a disability, but is doubly condemned because no one can SEE it.

And it's easier to slam him than help him. He's a them. And everyone KNOWS there has to be a THEM.

And what compounds my pain is that I was Nic growing up. I know all too well what he feels sometimes.

And his pain turns me into a bird, continually flying into the same pane of glass, because I think it'll earn us both a hearing. It doesn't. But it doesn't stop me from flinging myself against it, again, and again, and again.....

So I came back to my desk and wrote the words, wanting to tell the committee members and all their friends, "HEY! My child may be 'weird' and 'annoying' but he also has autism. A little mercy goes a long way....."

And no sooner did I type this than a message came across my desk top:

Psalm 102:17
he regards the prayer of the destitute
and does not despise their prayer.

The LORD cares for all the lowly and the outcasts. He is a friend to the friendless and hope for the hopeless; Our God is an awesome God!

Coincidence? I don't do coincidences.

But I am mistaken to expect mercy for either of my sons in these quarters. I will finish my commitments. And then I am done. Because I don't want any part of any community that doesn't want my sons, either.

Rethinking Systems Change

I am convinced now that systemic change has to happen with the children. Because their parents are idiots. Ignoramuses. Intractable, prejudiced PITAs.

Without turning this into a multithousand word screed, I had a Eureka moment at about 7 pm last night. I already mentioned that I said goodbye to my soccer team--truly an awesome and amazing bunch of little boys. But by and large, their parents did not impress me. Which is a shame, because in another 2-3 years, they will be just like their parents--their attitudes will be hardened and fixed.

So I had the committee meeting for the neighborhood association at B's house yesterday. Which would have been okay if I hadn't been treated to how much time all the kids spend hanging out together.

That's right. You know my kid is not invited to hang out with their kids. One mom, when I told her Nic's name, said, "Oh, I've heard of him."

I gave her a wan smile and said, "That's right, he is sort of famous."

No response.

I couldn't wait to get the f*ck out of there.

So I came back home from the meeting, pick up the boys and we all went out for a couple hours (nothing big, just checking out a new store, elevator adventures, etc) and I broke down a couple times talking to hubby about the meeting, and really, it's not so much that he is excluded, and talked about, and people STILL don't freaking get it, it's just that in my heart of hearts, I KNOW he is not really ready to go over some one's house and hang out because he is notorious for making extremely bad choices in face of the fact that he clearly knows better.

Hubby wants me to stop volunteering. I tried to explain to him this am is that reaching kids is really my best shot at systems change in our community.

Because the adults just. Don't. Want. To. Hear. It.

So long, boys

I went for a run this morning before the sun came up, and I am amazed that I have as much stamina as I do. Then again, maybe the endurance I've built up from years of butt-kicking and name-taking I've done on a daily basis on behalf of my kids for the better part of the last 10 years has something to do with it.

Anyway, I went out, still grinding my teeth over the email from last night, and somewhere between miles 2 and 3, that small still voice began nattering at me.

"Yeah, but," it said. "Isn't your problem a good one to have?"

Between miles 3 and 4, I stood in some woods, the sun suddenly up as it often is at this time of year, listening to the chorus of birds all around me, and really absorbing that fact. Yes, I have to work uphill against ignorance and prejudice, yes, I have to work harder to keep my kids motivated, to keep them believing in themselves when the adults around them fail to. Yeah, I know, I GET IT.

But the fact remains, as one good friend points out continuously, as much as my kids have stacked against them, they have as much--if not more--to work with.

In other words, kwitcherbitchin'

Once again, the inner voice shut me down--the complaining me, anyway. Which is fine. That needed to be done. I came home and got ready for the day, which included swim lessons (good ones for both boys), registration, G's last soccer game and a pizza party.

The last two are what have me sitting here, wistful. As stressful as the coaching experience was, I'm glad I did it, glad I had the opportunity to work with a wonderful bunch of little boys, and I guess I am sad because I know I will never do this again, or I might once the kids get older and I have time to volunteer for stuff like this.

I'm sad because I'll miss the kids. I'm glad I got to know them. And I wish every last one of them the very best life has to offer. God speed, little men--and thank you.

Damned Faint Praise.

So I had this delight waiting for me in my inbox this evening:

Just wanted to update you and the C family about Math Olympiads.

First, I am delighted to have Nic as part of our "Varsity Math" team. Math Olympiads has only met a few times, but for the most part Nic has been participating and staying on task. He tends to work alone or seek adult help, so we are encouraging team work. Communicating mathematical ideas and trying new strategies is our focus. However, he did become very frustrated during our first meet yesterday. This was due to the fact I could not help or explain the problems.
So we came up with - in Nic's words, "a great compromise." Love it!!
He will come for all the practice sessions and skip the competitions. This way he is exposed to the math, but without the pressure.

I will keep you informed about our competition schedule in the future. Let me know if you would like me to notify Nic's parents as well.

Have a wonderful weekend

Okay. First of all, no one said anything to me YESTERDAY--or even in the preceding week that there was a competition. Second, the quick easy out was a little too quick and easy for my gut. I responded:

"I wish I had know about this and that there was a competition. This is fine, but I am thinking as Nic gets more comfortable working with his teammates that he might be encouraged to try to compete. Of course this is totally up to the discretion of Mrs ****.

I'll talk to him this weekend about it. Thanks for the update and have a good weekend!"

I sound chipper enough, but I am deeply annoyed. I half expect that the response that will come back is that they can't make him. Fine. But I can. And Nic knows it.

Why are people so quick to throw up their hands? I dealt with this less than a week ago, and guess what, Nic took to his new role like a duck to water. And I expect....fully expect.....that I will be heard, and Nic will compete.

But I can't expect it to happen next go round, or even the next one, because, you know, they think he CAN'T.

I can't wait until he proves them wrong. Like I told him tonight, the only failure is not trying at all.

But damn, these people make it hard for me to keep my kids motivated. They make it too easy for them to cop out.

Damn them. I know they wouldn't want this for their own kids.

Damn them.

Rising trout, November dusk....

I just had a huge WTF moment. I need to put that on ignore and concentrate on a couple other things that are more important....

...like watching the trout rise in Valley Creek today. I wonder sometimes if I should pack some fishing gear in the back of the van, since the stream is a short stroll from where I work. I stopped by there this afternoon and was mesmerized by a pair of trout rising. One flashed, broke the surface, and was gone by the time the stream settled back into its flow....

and then there is a moment at dusk, maybe 5 years ago, that came to mind while I was in the woods. One afternoon I took the boys to a local park, and some one was flying a remote control helicopter in the field for their kids. Mine blended with his, and as darkness fell, I will never forget G's delighted squeals, his mouth a happy smudge in white as detail was lost in the waning late afternoon light...

and I think of my own life in moments as these, as moments that I can sometimes cross reference to a time and place in my life....sometimes I can't. That's the hard part about getting older, random beautiful moments half remembered like a dream, and the harder you try to remember the particulars, the more it recedes.

Thinking, too, of imprinting, how I am so much like my dad, not necessarily because I remember, but because who he was is somehow bound up in who I am. And how much like my mother I am, by dint of necessity, how tough she is, how tough she taught me to be, and how she influenced my own parenting. I am my father, but I have become my mother, because I had to, and I am not at all sorry.

Thank God I have her laugh. Thank God I have her sense of humor. Both get me through a lot.

But I still ride a lot of it through on dad's shoulders.

Yet, I rise

Failure ran thick and fast and furious yesterday--almost fast enough to ruin the whole day.

Drama class went okay on Friday--at least I thought it did. Although Nic came out in the hallway to check on me frequently, he was happy to be there, and of course I know this is G's thing--he is really enjoying it. I say this because it is relevant to what happened next.

SO swimming, usually a good outing, went sour first. After failing to engage hubby ("What do you want me to do?" he asked before burying his nose back in the newspaper), I picked my things up and went for the door, holding my tears until I got outside the balcony. And then wondering where I was going. 'Pool deck,' said the inner voice.

AS a parent, I'm not supposed to go there, but between the steps and the girls' locker room I pulled myself together and became the hardest self I am in the face of Nic's intractability.

And it worked. Another ASD mom was down there, and I am sure she thinks I'm the biggest bitch on the planet for talking to my son the way I did. But I know when Nic gets in the headset that he was in, that THAT is the only thing he responds to--positively.

In other words, I become my own mother. I hated her when she did this to me, but decades later, I get it. And now I love her for it.

Anyway, we turned the session around. And I extracted a promise from him that he needed to do chores for me to make up for his behavior (and I am proud to say he did them).

Meanwhile, G was having his own meltdown. I was unable to do anything about that, but fortunately, the staff was able to turn it around, and by the time I righted Nic's boat, he was laughing with his teachers in the shallow end.

I took Andy and Nic home and then went with G to his penultimate soccer game. We were down three kids, so I moved G down, one of the K's up, and the K's got pounded. Which wouldn't have been quite so bad if G and one of his teammates didn't start fisticuffs in the last 5 minutes of the game. I spoke sharply to them both; G made a face at me, and the other kid ran off the field in tears.

I took G over and made him apologize and I apologized too. But I felt awful.

So I get home and find a phone message from the drama teacher. And I know what's coming; she wants me to take Nic out.

Deep breath, sit in my happy place, dial the number. Yes, it turns out that I am correct, but I talk her into letting Nic stay in, with the promise that I will more closely direct Nic and that he will help them put together the program, by interviewing all the kids (with my help). That's an hour of my life I will never get back, so I would like to think it made some difference to other kids like Nic she might encounter.

Worked with G on his Sunday school homework, then took the kids to soccer. It was good to see Nic play so well with his friends, and I loved how he sat with his team, joking and talking as he ate pizza with them afterward. They look just like any other bunch of kids having a good time. (and I wonder, why can't this happen at school for him? Why?)

Hubby insisted on going to mass with us after, even though he had work to do. And it's clear he has a lower set of expectations of them than I do. He brought in a book for G that he and Nic tussled with. I looked right at hubby and said, "aren't things hard enough, or do you really think you need to make it tougher for me?" He didn't answer, and I got Nic to follow the mass in its entirety despite the distraction. G, not so much, but I will have another opportunity next weekend.

I was exhausted by the time they headed out to the sleepover. Despite two offers to go out, I stayed in, made a fruit and cheese plate that I enjoyed with some wine, and watched The Big Lebowski. Today, I enjoy another glassblowing class and a beautiful fall day.

For everything else, I am simply recharging for the next round of battles. Because you know there will be plenty more.

FTW

I had wished myself a normal day as I left the house early this morning.

What I got? A stand out, awesome, incredible, amazingly good day. You know, one of those days where if you dropped dead in the next 5 minutes, you'd be out on a high note.

I had the usual queue of work to handle when I arrived; called home to make sure the boys were up and answered a few emails. And then had back to back meetings.

Which all rocked. I am amazed at how much change I was able to influence either directly or indirectly over my short tenure--and how much more I can still help along. I carried some of the successes of that meeting into my boss--and passed him a baton, which felt pretty good, and that would have been awesome if that were all there was.

Actually, there was more; our team went to lunch for our monthly outing at a great sushi place nearby. I would have been happy going to a deli, but I was thrilled to go out for sushi.

"What's that?" One of my cohorts stared at my plate.

"Eel," I grinned. "Want some?"

She declined.

So if that weren't enough, we came back to a greeting from our collective new boss, who was thrilled to report that he had a glowing report from the Brand team about our work.

I was floating by this time. I stopped in his office and went just short of doing an end zone dance.

I head back to my desk, grinning ear to ear, because I haven't felt this level of success in literally years, and the pounding I have taken on behalf of both boys the last few weeks has left me desperately needing SOME indicator that I wasn't a complete loser. And here I had validation.....and one more piece came over email right before I left work:

Lunch recess today was a success! Nic played appropriately with his buddy and some other students. He seemed to enjoy playing football with the others. He was not interested in reading and wanted to continue playing the game.

Hello! Peer buddy? My idea. Only took two weeks, but they listened, implemented, and BAM, success.

Sushi, high marks, awesome day for Nic, I almost feel like I can die now.

Almost.

Craptacular!

It all began with "Holy crap!"

Actually, it began before that, but this was where I came in. Nic said it when we came home yesterday, then several times over the course of the evening. I said nothing, thinking a) he could be saying worse and b) if I drew attention to it, I'd hear more of it. Finally, hubby (with a mouth on him like a longshoreman) called Nic on it shortly before bed.

While he lectured, I thought about it and asked what I thought was a logical question. "So where did you hear that, Nic?"

"From the kids in my class who are not my friends," he answered. "They say it when I chase them."

Hmm. "Okay, so what are you doing chasing these kids who aren't your friends, Nic?"

Oops. Nic shuts down, realizing that he may have incriminated himself and thinking I'd forget about it.

He forgets who he is dealing with.

I send a short, sweet note to the team, requesting an update to the recess situation. A phone call follows, wherein I hear that Nic lost minutes off lunch recess today and yesterday for....chasing other kids around the yard, then yelling at his aide.

"Look," I tell her, "I have a really hard time doing the pull-through at home if you don't tell me these things the day they happen. He loses the computer for the rest of the week, but you all have to really have to keep me up to date if we are going to make the lessons of consequences stick." I said this or some variation of it three or four times, thinking that I shouldn't have to explain how consequences work.

I call hubby, update him, and have to break the news to Nic that he loses computer--again. He is not happy.

"You don't get to do whatever you want," I told him with finality. "The same rules that apply to everyone else apply to you, too--more so, because you have more people watching you, and higher expectations."

He impressed me. He didn't even say "it's not fair" once.

Because he knows better.

Life Lessons Learned

In volunteering for multiple things, I've learned a couple things that I am good at:

1) I've been pretty good at coaching soccer; my gift has been finding what my players are good at and assigning roles that work for them. As a result, they've been a pretty good team. Even Gabriel had things to bring to the table.

2) I'm much better at teaching Sunday school now than I was four years ago. I was all about the book four years ago; now I bring hands on activities for the kids and make them think of their spirituality in analogous terms. And this is working for the boys, too.

3) Not taking to den leadership so much, but I only had one meeting.

And I still lector and do as much as I can in other ways. I find it keeps me honest and on my toes.

I was stressing about something this afternoon that ultimately is nothing to stress about. Almost in response, I noticed the brilliant light against the charcoal clouds as the sun set, reminded yet again that I can't fret too much over things in this world. I was excited about the skies, and the colors, and couldn't wait to pick up the boys so I could show them.

Nic was happy to see me, and he and G gathered up their things and patiently humored me while I went on and on about the skies. Nic ho-hummed until he saw the rainbow.

G stood up and looked at it for a long time.

Hope springs eternal

SO I just came in with the boys from the Saturday/Soccer/Swimming Scramble and found this note from the drama teacher waiting for me:

Dear Elizabeth,

Thank you for going with the flow last night.
The first night is ALWAYS a challenge and we just get to know each other.
I believe that with the transition both Nic and G made after a while last evening, you will be given a break the week after next.
I truly do!

Not that you were begging for one, but I can see that Nic became
attached to Kathy very quickly and that G moved in nicely soon afterward.
Your sons are precious, God Bless them!

Let's have you stay for a little while next week and if it's ok with you,
why don't you hang out outside the classroom after a while and see what happens.

Terry and I had dinner after everyone left last night and discussed the art, the plan, etc. now that the surprise of 24 students is over...HA!

I believe that if we split up the children so they keep busy, we're going to be golden. God always has a plan and for that, I am very grateful. You won't believe how smooth it gets by the third week.

Take care! You're a wonderful mother, God Bless you!

And me for the record: it is stuff like this that keeps me from the edge of the abyss.

Never Say Die, Defeat, or DONE (even though evidence indicates otherwise)

Yesiree, nothing quite like the autism smackdown.

I need to write this before I lose it, in spite of the fact that I have both boys clamoring for attention, dinner warming in the oven and all the other thousand little things that are niggling in my periphery, needing to get dealt with. I've been struggling for quite some time, despite working, despite my teaching Sunday school, coaching soccer, taking on G's den leadership...as if all these things are proof that I am just like everyone else, that my kids are just like everyone else.

Who the fuck am I kidding? Really?

I signed my kids up for a drama mini camp, thinking it a good creative outlet for them both. The call I got at 5 pm to come get them both shouldn't have surprised me.

I called hubby to let him know what I was doing and to add, "I am so sick of my heart getting stepped on."

But I opted to walk instead of drive to the school. And in the walk, I felt everything harden, like it does when I am getting ready for some kind battle that involves either or both kids.

I decided, in the space of my footsteps, that the boys are not leaving. They will stay until the end of the session.

They both greeted me in the hallway; I sent G back in and told Nic (crying) to go wait in the hall until he could pull himself together. And he did. And G participated. And I stood there and recalibrated how this all was going to go down, but basically deciding that both boys are going to do this even if it means me shadowing their every move.

Meantime, Nic bonded with one of the teachers. And he decided he was okay to be there.

We argued some as we walked home, mostly me telling Nic all the ways he needs to help me out.

"You just want to tell me what to do," Nic groused.

I stopped and said, "No. You know what, I don't want to tell you what to do because you are such a freaking pain in the ass. Do you think I like listening to you complain? No. But I do need to tell you what to do because I am your mom and that is my job."

It resonated. He made me a nice little card and put a Hershey Kiss in my pocket.

And his face and eyes were red when he handed me the card.

I hugged him, willing my own eyes not to well up.

Because if I start crying, I will never stop.