blah blah blah about the blog

When I started this blog over 3 years ago (!!!), I think my aim was to have a conversation about autism. No- that's not quite right- my aim was to have a conversation about my son who is autistic. About my life as his mother. A conversation with strangers who had something in common with me. In doing so, I hoped to quiet my mind (a phrase from my yoga DVD) and find comfort and familiarity in a situation that was sometimes uncomfortable and unfamiliar.

Over the next 300 posts (this turns out to be published post #302), I did find comfort. And I found friends. And I found a voice. I found a hobby that was/is quite rewarding to me.

But I didn't quite think through the ramifications of this little website. I told my family about it- mostly because I didn't want them to think I was hiding something from them- sneaking down to the basement to clickity-clack on my secret computer project. But I didn't tell anyone else. None of my real-life friends or co-workers. No one.

It wasn't a deep, dark secret or anything, but more like this: say I decided to take up tap dancing or some other new interest; I might not be that good at it, no one else might really give a shit about it, I would seem like I was fishing for compliments if I told everyone about it, and really, it's just something I'm doing for me- something private between me and my tap shoes. I talk to my new tap-dancing friends about it because it's something we share, but I'm not going to bore the hell out of my neighbors by telling them about it... ok, you get the analogy.

And then, after a couple years went by, it seemed even weirder to tell anyone, because if they surfed over to check it out they'd see all these dozens of posts of baggage, and it would seem like I had been keeping this big secret side of me, and again like I was fishing for compliments...

I realize that I'm waaay over-thinking this, but that is my tendency, isn't it?

But my mom and my husband, God bless them both, have been telling lots of folks about this blog. (And I never told them not to, so it's not like they're going against my wishes, or they didn't know that they were.) But a couple weeks ago they each told someone new about the blog who has a connection to Henry's school.

And that was just a little to close for comfort. So I freaked out and didn't write anything for awhile, briefly made the site for invite only (with myself as the only invitee!), and now I'm posting this little brain-dump.

I have lots of options: I could go to a invite-only site. I could keep this site but be more careful (more thoughtful?) about what I write. I could go to a host like vox that lets me decide what kind of post I'm writing (for public or private publishing). None of those options is totally appealing to me, I think because the first option eliminates the opportunity to meet new readers, while the other two options require more work on my part.

So that's the state of the blog right now. Please weigh in with your thoughts about blogging, privacy, and my over-reaction to the situation. I'd like to know what you think.

warm fuzzy

(My sons holding hands on a walk.)

Maybe it's the cherry pie that Henry and I just baked and sampled, or maybe I'm getting all wrapped up in the season- I'm really counting my blessings right now.
It's no accident that Thanksgiving comes at this dreary time of year- something pleasant (or at least busy) to keep us occupied, or we might all be tempted to hide under the covers all day long. I know it was hard for me to get moving on this Monday morning- the sun not up yet and the rain drizzling down. Today I realized the truth in the cliche: my kids are literally the thing that make me willing to get out of bed every day. I don't mean that in a hideously depressed kind of way. I just mean- on a day like today I cannot imagine being motivated by anything else. But those two boys make me smile every morning- they make it worthwhile. They're the reason I go to work and the reason I go to sleep so early and the reason I try to figure shit out.

Today's dreary Monday-ness was worsened by the fact that I scooted Henry on to the bus this morning without his backpack. So I needed to drive it up to him at school before lunchtime. What a lucky mistake that turned out to be! I got to see his classroom buzzing with activity. Henry "introduced" me to his teachers and classmates. (Well, sort of. He said "this is my mom", but usually neglected to tell me the other person's name.) I was so impressed by the way that all of the children told me their names and mumbled "nice to meet you". They made varying levels of eye-contact, but wow- when those kids looked me in the eye? I was smitten.

I may have written before about the old man in Chicago who said that (then-1.5-year-old) Henry had an "old soul". There's something special about spectrum kids, whether it's that they have "old souls" or just that I know how much it takes for them to look me sweetly in the eye and introduce themselves. But whatever it is, I'm hooked.

Mix in a few laughs with old friends on the phone this weekend, my lifeline of internet friends that I can now reach through various media (although I haven't figured out how to Twitter from my cell phone), the sound of two boys and their dad roughhousing upstairs, Thomas' artwork (pictured above), and I have a lot to be thankful for.

So I've been thinking about what I want to write about:

The worry that grips me whenever Henry is sick, as he has been the past few days. I know this worry is pretty ridiculous when you consider that some mothers have things like brain tumors to worry about, while my child has a common cold virus, and all it really comes down to is that he's been sickly all his life and I don't like it.

And really Henry's probably toying with me when he asks me to tell and re-tell the story of the worst day of my life while we wait in the doctor's office for 2 hours next to the little girl holding a barf bowl. He's really just trying to weaken my defenses so I will agree to buy him 3 rewards (a dvd, puzzle, and sticker book, oh and also a box of Christmas Tree Cakes) rather than the one reward that was promised. Touche little sick one.

Maybe a more entertaining thing for me to write about would be how much of an ass I made of myself at Thomas' preschool for those 2 weeks that L was out of commission. I'm a little perplexed that I feel comfortable talking to strangers at work all day long, most of the time without embarassing myself, but talking to other parents at preschool seemed to make me lose all sense.

Just to appreciate the faux pas, let's imagine the scenario using my blogging friends and their children. Say we're all out in the hallway waiting for our children to be dismissed from class (wouldn't that be awesome if they all went to the same school?!). I turn to, say, MOM-NOS and say "Did Nik have fun at the zoo this weekend?" And MOM-NOS answers "I don't know." I furrow my brow over this odd answer for a few seconds until I realize that MOM-NOS must not be Nik's mother.

Yes, quite embarrassing. Made only slightly better by Thomas telling me "it's ok mommy, I mix up Nik and Bud's mommies all the time. They kind of look alike." Not really comforting coming from the 4-year-old who doesn't even know all his classmates' names.

Ironically, in this same imaginary scenario, Bud bites Tommy the next day. So MOM-NOS (who I've been trying to avoid after my slip-up) stops me on the way in to pick up the kids. She says "I'm so sorry that Bud bit Tommy."

And I blurt out "Well I'm so sorry that I thought you were Nik's mom!"

I then go on with something inappropriate about how my older son has autism and hurts other kids sometimes so I totally understand. Why did I respond this way? It sounded both like I thought her child was autistic and also like I thought it was just fine for children to hurt one another.

By the end of the week, when another nice mom inquired about having a playdate, I just stared at her with deer-in-the-headlights eyes. A PLAYDATE?! HOW DOES THAT WORK? DO I HAVE TO TALK TO YOU THE WHOLE TIME? BUT I'LL SAY SO MANY STUPID THINGS!

I guess I'll just chalk it up to being out of my element for a couple weeks. We live in a different school district than most of these people, so I can start over fresh when Tommy starts kindergarten next fall.

For some reason I am reminded of an embarrassing moment from when Kate was little:

It was first grade and she had just come to live with us. I had an inferiority complex about not being a "real mom". I thought all the other mothers new all the secrets because they had actually birthed their children. I freaked out about packing her lunch and bringing a dessert to the Brownie potluck. I thought that all the other moms made homemade secret recipe treats, and that they were given those secret recipes at the hospital before they brought their babies home or something. (I thought that until I arrived at the first potluck event and saw the table covered with store-bought cookies.)

So, it was Halloween night and a friend from Kate's class comes to the door with her mom. I'm trying to make friendly-mom chit-chat, and I say "so is M's dad at home giving out candy?" M's mom replies "I don't know." See, it turns out that M's mom and dad were never married and never lived together. It turns out that not every family is cut from the same cookie-cutter. I was so busy feeling like the odd man out because I was a step-mom (and not even a legal stepmom yet at that point- we weren't married), that I didn't realize there were lots of other unconventional families out there as well.

It's disconcerting that I still feel so uneasy around other moms sometimes- 2 kids and 12 years later.

historic

I'm not a political blogger and have tried to stay far away from the subject of the election. I have my opinions and beliefs, but I usually keep them to myself- I don't try to convince anyone else and I don't want them to try to convince me. But I was not unaffected by the frenzy of the 2008 election: this year I did something I've not done before- I put out a yard sign. One of probably 40 on our street, and 35 of them were for the same candidate. But it still felt like a declaration to me. 39 years old, and I'm still learning to speak out about what I believe.

I woke up on Election Day feeling as excited as I do on Christmas morning. And when I turned on the tv Wednesday morning at 5 (I went to bed at 10, not guessing the race would be decided so quickly), and saw the news "Obama Makes History", I cried. Not just because my candidate had won- I always vote for the Democrat- sometimes they win, sometimes they lose. I cried because I never dreamed we'd see a black president with a funny-sounding name in my lifetime. That's what gives me hope about this election- maybe our country is not as bitter and frightened and cynical and divided as I thought.

My kids will grow up knowing that a man's race is as irrelevant to his ability to be president as is his shoe size or his middle name.

There's a lot I want to say about this election, but it's all being said so well by others already... I don't know how to gather my thoughts. I just don't ever remember feeling this excited on Election Day. It's nice to have the idealism and optimism back for a little while.

ducking and rolling

I know I've said this before: that I like to think I'm a real flexible, by-the-seat-of-my-pants mom (in a good way). But too much of that can wear me out- I really like my routine. This week has been chock-full of changes and adjustments- ducking and rolling.
We ended up voting when the polls first opened Tuesday- Bill went from work (he goes in to work very early), the boys and I went up and got in line, waited about 20 minutes or so and then Bill was done and could take them home while I kept waiting. I love taking my kids to the polls when I can, I want them to understand what a special right it is. I always get choked up when I explain that people in other countries don't get to choose who their leader is. (The election merits a separate post: coming soon.)

So anyway, the voting was out of the way and we got to the bus stop right on schedule.

Every morning Henry carefully selects a half dozen prints, along with a few books or magazines, or maybe a DVD box, to take along in the car and on the bus. His bus ride is about 40 minutes each way. A couple times he has brought a Leapster to play or the CD player and headphones to listen to, but mostly he just brings his beloved things to look at. While we wait for the bus I check each item to make sure it bears his name, so we can get it back eventually if it is left somewhere.

Monday afternoon Bill reported that the bus driver told him she wanted Henry to only bring one thing on the bus. I guess I assumed this was a suggestion, and didn't realize that it was a new rule. One that we should have prepped for a bit before Tuesday morning. So I walk Henry up to the bus and she stops him and says "remember, you can only bring one thing today."

Aye yie yie. His face crumpled and he proclaimed "I will bring nothing! I will leave it here!" I was about to cry myself. I was very close to just telling her that we would start the new plan tomorrow- we need more time to get used to the idea. But I didn't want to be the parent that undermines the bus driver's authority.

I do understand her reasoning: Henry wants to keep the stuff in his hands. He refuses to put it in his backpack, even just getting on and off the bus. His little legs are still so short that he can barely climb the bus steps as it is, and when you factor in the hodge-podge handful of papers sticking this way and that, you know he's going to fall or drop something, crawl around to find it, and hold up all the kids on the bus as well as all the traffic lined up behind it. I do understand. But I'm sad for my kid. Sad that he doesn't understand this better and sad that he won't just adapt by shoving the stuff in his backpack. Sad that I can't just make it right for him. Sad that I couldn't just grab him and his stuff off the bus, put him in the car, and drive him to school. But what would that achieve? It would make him feel better and make me feel better...

Anyway, he was pissed and I was pissed and the bus drove away. I was frankly worried that he would become very aggressive on the bus and start attacking other kids. Ms. Bus Driver has not seen that side of Henry. She would be (again, understandably) very upset and then the whole problem would escalate...

I immediately vented to my new mom friend at the bus stop, and she advised me to call the school and ask them to help me work on this issue. I called and spoke to one of his teachers to warn her that he might be upset when he gets to school. She said that they have been rewarding Henry with prints from the computer, so he has a collection of them at school also. She offered that maybe if I remind him that he has some prints at school, he'd easier leave them off the bus. I called later in the afternoon to check on him, and was told that he was having a fine day. So hopefully he is learning to manage his frustration. The past couple days have gotten better at the bus stop. This morning he still went through the motions of saying "I will bring nothing!" But then picked up his book and carried it to his seat.

But back to Tuesday morning: after the sad incident on the bus, Thomas and I drove on to L's house, only to be greeted by L in tears, saying she was having a gall bladder attack and needed to go to the emergency room! She ended up being admitted to the hospital and having surgery to remove a stone that had traveled, as well as remove her gall bladder.

So I unexpectedly had the rest of the day off on Tuesday, and presumably the rest of the week. It's not a bad thing to have to take time off work, but it's worrisome when your "co-mother" (I think I'm going to start calling her that!) is in terrible pain!

I always feel so strange when I'm home like that- torn between wanting to do stuff (go to the park, make a craft...) and wanting to veg out on the couch and eat Halloween candy. I mostly did the latter, although Thomas and I did play some legos and Bakugan. When I talked to my dad Wednesday and told him what was going on, he offered to have Tommy stay at their house for a few days, and we took him up on that offer.

I don't like that Tommy has been gone so much lately (he was at their house 2 weekends ago so we could go to a football game, and then spent the night at a friend's house last weekend), but he did call last night saying he missed us, so I guess he's not ready to leave home yet :-)

Halloween 2008

It's been quite a busy week around here. Some neighborhoods in our area (including ours) had trick-or-treat night on Thursday, the 30th, while others went ahead and had in on the (more logical?) day: Friday. The boys had parties at school, and were also invited to a couple birthday parties this weekend!
So it was a full week of carving pumpkins, shopping for presents, getting in and out of costumes, and gathering SO MUCH CANDY. Too much candy, that my children have already forgotten is here and I, unfortunately, have not forgotten, but keep eating it...
The first video was taken before we left to trick-or-treat. Henry is describing his costume (it has a waistband!)- sorry I idiotically turned the camera sideways to try to capture the whole look. You'll also see Spiderman dart back and forth.
The second little clip I wanted to tell you about: last year there was a house that was scaring everyone. Even the little kids, which ticked me off. This year we came up the opposite side of the street, and I saw that they were again dropping something down from the roof of the porch when the kid approached, and screaming. So I started warning the kids: "that's the house that scared you last time."
If they had asked to just skip that house, that would have been fine. But, you know, God forbid you walk past one house that's giving out candy. Henry was determined to trick-or-treat there. So, first I loudly announced "this is the house that scared you last year", hoping that the teenagers on the porch would get the hint. Then I suggested that Henry get out his sword and use it to defend himself against the scary house. Of course, my very noble knight had trouble unsheathing his sword without some assistance. But once I helped him get the sword out, he waved it valiantly, and proceeded up to the house.
I was so happy because the kids on the porch played right along! "Oh no! Don't come any closer! Here- just take your candy and go!!!" they shouted, and threw 2 pieces of candy out onto the sidewalk. Of course we made a big deal out of how Henry scared the scarers. And that's what he's telling you in that little video.
Kate was giving out candy at her grandma's house (her mom's mom-she lives near us), so Bill took the boys over there to trick-or-treat and see their sister.
Friday night Henry had a birthday party to attend, so I took Tommy trick-or-treating in his babysitter's neighborhood. A very cool older kid (L's nephew- 2nd grader) went with us, and ended up inviting Tommy to SPEND THE NIGHT. After I nearly passed out at the thought, we decided to give it a try. Tommy has been away from home many times- but always at Grandma & Grandpa's. We tried it once before with a friend and it didn't go so well- I ended up having to go pick him up.
I slept with my cell phone next to my pillow all night, but of course everything went fine. We were all meeting at a indoor play place the next day for a birthday party, so it really worked out very well.
Henry did well at the party Friday night, as well as the party yesterday afternoon. Although he really wanted to dance around out in the video game area, watching and playing games, he agreed to wait in the party room until the appropriate time. This was huge- I didn't have to ignore the whole party and stand out in the game room with Henry for an hour. Huge. He attempted lots of games with good spirits, and I was just really proud of him. Both my sweet boys are growing up into such nice kids.

fantasy

I walked into the boys' bedroom yesterday morning to wake them up, and Thomas startled me by saying plaintively "I just wish the Ninja Turtles could be real." Perhaps he was dreaming about the Ninja Turtles and woke up with that thought on his mind- lying there in the dark, half awake, half asleep.

Moments like this often catch in my heart. Here's something I don't like about being a mom, a parent, a grown-up: I don't like being the voice of reason all the time; the dream-crusher. I remember how that felt as a child; to so love the book you were reading or the movie you were watching that it pained you to acknowledge that it wasn't real- that E.T wasn't hiding in your closet, your car couldn't really fly, or you wouldn't uncover a mystery if you took enough notes in your spy notebook.

I know that L has had to break the news to Tommy that he is not a superhero and cannot fly. I know she had to tell him this for his own safety. But yesterday morning, in the pre-dawn dark of my sons' room, I just said "who knows? Maybe they are real and we just have never seen them." And I felt like a 4-year-old all over again.

an autumn outing

Yikes! I don't want to leave that rant up here too long! And, we did something fun and photo-worthy yesterday...

Remember our 10th anniversary trip? Bill suggested that we take the boys down to that area for the day, hike around and have a picnic. We decided to stop at the first area of the park that we came to. Unfortunately, we didn't remember that this area was the most treacherous. I literally remember thinking when we were here before "I would never bring my kids here- I would be terrified." Ooops.

Tommy was so very excited, and just hopping and jumping around like he does, right near these slippery drop-offs. And we worried about Henry just as much, for almost the opposite reason: he is so weak and uncoordinated that he might just stumble and fall down and panic...

So we just held on really tightly. And of course everything turned out fine.

I ended up being the only one who slipped at all. On one of these broken steps. I was holding Henry's hand at the time, and made a big deal about how he "saved" me.

Henry pulled the same routine he had at the pumpkin patch: I'm not going to look at the cliffs. I'm not going to hike on the trails. I just want to wait in the car... But it was easier since Bill was there with me- one adult to talk Henry down and the other to be excited with Tommy. Henry ended up enjoying himself, as always. He specifically asked me to take this picture:

There was lots and lots of step-climbing, and we were so proud of Henry for the way he kept up. I had visions of carrying him up and down steps when he was 5 years old and just didn't have the strength, or his little legs were too short. But he's a big boy now and didn't complain once. He even enjoyed balancing on some of the stone walls: "It's like a balance beam!"

Stamina is never a concern with Thomas, and yesterday was no exception. He could have stayed twice as long, climbing and jumping and making up adventures. In the picture below he is holding a piece of rock that he found and had declared to be "a dinosaur's tooth!" (This picture is kind of dark because we were under a huge rock overhang- I don't know if that's technically considered a cave, but that's what we called it.)

This picture was taken from inside one of the cave areas. Can you blame the old man who made this his home? If you take out all those people wandering around, what a gorgeous retreat.

if you can get past the rant, you'll read about the open house

First, a little rant that I can't keep inside: For some reason we have been getting US magazine at my office. Jenny McCarthy is on the cover this week, with the story title "How I Saved My Son." I have tried (mostly) to keep quiet about her- some of my friends may like her or agree with her and I try to keep a live and let live mentality... But this woman does not speak for me. She is not "autism mom" personified, and I'm afraid that the general public sees her that way.

US magazine is not high-level journalism, of course, but this article contains quotes from her like "I made a deal with God the day he was diagnosed. I said, 'You fix my boy, you show me the way and I'll teach the world how I did it.' ... We're recovering kids from autism! Evan was nonspeaking, hands flapping in the corner and didn't know anyone was in the room. Look where he is now. I healed a vaccine injury." Well, as long as it's all about you!

It really reads as if this woman is using her child's disability to maintain her own fame. Please, God, let me write a book about my child's struggles, so that I can go on Larry King and yell at doctors from the American Academy of Pediatrics. If God were going to bestow special autism mom wisdom upon somebody? I can think of a dozen other women I know personally that he might choose- that he already has chosen, as a matter of fact. And those women put their heads down, get to work, hug their child and hold their friends' hands.

My son also has many more skills than he did when he was diagnosed. I don't claim to have cured him. He has grown and learned, like any child will unless he is locked in a closet somewhere. We all do our best Jenny, and I thank God for the other autism moms that I look to as sisters. But I don't count you as one of them. You are doing us all a disservice when you claim that you are the first and only mom to care enough to try to help your son. Your son will likely continue to struggle in his life. You need to stop parading him around as a "cure" story. You were and are blessed to have him in your life, and for all you think you have done for him? He has done more for you than you will ever realize.
__________

Ahem. Anyway. Last night a few exciting things happened:

1. Henry brought home a BIRTHDAY PARTY INVITATION. For a boy in his class. I honestly can't remember the last time Henry was invited to a birthday party. It was probably when he was 4 years old- for another kid at L's house. He has never been invited to do anything with a classmate.

2. We went to the open house at Henry's new school. We met Mr. D (the "best buddy" that Henry hangs out with at recess time), the classroom teacher, the music teacher, the classroom supervisor, and some kids in Henry's class. The cool thing was that the kids seemed to say hello to one another spontaneously- without parents urging and nudging them toward one another.

Mr. D told me that he and several others have been so touched by Henry telling them that he's "going to miss them". We talked about how that's Henry's way of reaching out- trying to let you know that he cares about you. I thought he only said those things to Bill and me, but whaddya' know? He has some other special people in his life too.

There is one mother that I recognize from the tour I took of another school for autistic kids this spring. (The tour that left me in tears). So I know her family is new to this school also. I was talking to one of the teachers when I heard her daughter come over and say hi to Henry. He said hi back. that was really about all, but my eyes met the girl's mother's eyes, and I knew we were both thinking the same thing. I knew we were both about ready to burst with pride and with relief that our children are finding more opportunities than had been open to them before.

As I said in my little rant above, our children will continue to grow and change and learn, no matter what we do, or even in spite of what we do. But I am hopeful that Henry's natural growth and learning will be fostered by his new school environment. I feel like we're on the right track.

open letter to the other parents at the pumpkin patch

To all the other parents at the pumpkin patch Monday:

My older son Henry, Tommy's big brother, has autism. I'm sure you noticed that he was acting strangely Monday. I'm sure you noticed that we kind of kept to ourselves. And maybe you've never seen someone with autism before, so I thought I'd clue you in.

Even those of us who know Henry best have a hard time discerning what happens at times like this. We had talked about going with Tommy's class to the pumpkin patch for weeks. Henry didn't have school and it was my birthday, so we planned this as a very special outing. I think Henry gets very excited about activities like this, but also feels uneasy- unsure what to expect and anxious because of his excited feelings.

Maybe when I tried to talk him into leaving his books in the car I got us off to a bad start. He ended up bringing them with him, but perhaps thought I was mad? Or perhaps he was disappointed in himself because he knew I wanted him to leave them in the car, but he just couldn't? I tried to reassure him, to tell him it was fine. That's when we were stopped in the parking area, hugging, while Tommy ran ahead with some classmates.

You'll remember that there was a lot of waiting in line- to enter the farm, and then again to snake through the little store and get our donut and apple cider. Henry was wanting my attention the whole time- saying things like "I'm not going to pick out a pumpkin. I'm never going to carve a jack-o-lantern," and wanting me to reassure him.

And when I tried to chat with some of you other parents Henry decided to get my attention by stepping on his brother's foot, or pushing. So, sorry that I didn't get to chat with any of you. It's nothing personal.

It didn't help that some of the reassurances I tried: "maybe you'll feel better after you eat your donut", ended up backfiring when we had to throw our snacks away and flee from the swarms of bees.

The other kids were loud and wild and some little ones were crying. Henry doesn't like any of that. And he isn't physically adept enough to keep up in that barn full of hay that his brother was leaping around in like a madman.

Henry did like the "petting zoo" (pen full of goats), and he found a couple quiet places to sit and look at his books. But again, he wanted me with him for reassurance. And that's not really fair to my other son.

And then there was that looooong wait to get on the hayride. That was really agonizing, as those of you know who were standing around us. I mean, your kids were impatient too, but they weren't whining and repeating the same things over and over and trying to provoke their siblings. Well, ok, maybe they were. Maybe that part isn't really autism-specific. But I felt bad because a couple times I got fed up and got down to Henry's level and said "THAT'S ENOUGH! I really don't like the way you're acting. You're making me really frustrated!" And then Henry's lip would quiver and tears would come into his eyes.

And at that moment I would remember that, as uncomfortable as I was feeling? He was feeling 50 times worse. He was just feeling really uneasy, and doesn't know how to soothe himself, aside from looking to me to make it better. And the only way I could really have made it better would have been to get out of that line and walk back to the car and drive away. But that wouldn't have been fair to my other son- the one who was behaving perfectly that day and who deserves to not have his fun messed up.

So we stood there and stood there and stood there- I literally had my back to all you other parents for like half an hour- trying to help Henry keep it together. And then we finally got on the wagon. And Henry seemed relieved- didn't he? Like he was glad to finally be getting on with the next part of this adventure. And to you, Max's mom, who took our picture so many times, it was really something when Henry sat down next to you on the wagon and said "I'm having a rough time." I was impressed that he expressed himself that way. I'm a little freaked out that he would just open up like that to a stranger, but I had a good feeling about you, after seeing you interact with your kids and others while we were waiting in line, so maybe Henry got a good vibe from you too.

And the kicker, of course, was after we all loaded back onto the wagon with our pumpkins. Did you all hear Henry stand up and proclaim "this is the best field trip EVER!"?

So that's the contradiction of autism- my family's manifestation of it, at least. I had a generally pretty crappy time at the pumpkin patch. But it's likely that Henry will remember it as the best field trip ever. Hopefully Tommy will remember it as such also. And I guess that's what matters.

so far, so good

Some of you may be wondering how Henry's new school is working out. I am really just trying to sit back and see how this plays out- trying not to rush to any judgment during these first couple months, so I don't want to draw any big conclusions yet, but I can share some things that have happened- good and bad.

(These pictures aren't related to school- just something fun Henry and I did together a few weeks ago. It turns out that our town has a Farmer's Market on Saturday mornings. One wouldn't know about this if one generally stays in her pajamas and drinks coffee 'til noon on Saturdays, so I'm a little late to this game. But we walked up one morning in September to check it out. Henry sat on that bench and ate almost a whole mini loaf of sweet potato bread. Then at home he ate FOUR AND A HALF of the six peaches we had purchased!!! )

So, anyway, school.
Remember the outgoing girl (let's call her O.G.) we met that first day on the school bus? Well she has become our entertainment every morning. She comes over to our car window, knocks on it, and then shows us what she's wearing that day (I have new Hannah Montana jeans, see?) or makes some other (one-sided) conversation, and then walks away again. One day I commented on her mom's Obama bumper sticker and, before I knew what hit me, outgoing girl had sold me 3 Obama t-shirts.
One morning she asked what we were listening to. It was one of our Disney read-aloud story tapes. "Henry," she announced, "I have a Lion King 1 1/2 read aloud that I never listen to anymore. You can have it. I'll bring it to the bus stop tomorrow. See you later." And she walked away. Henry's jaw was on the ground. "Is she going to get it?!" he asked.
That was a month ago. She has never found the tape but keeps insisting that she's looking for it. Her mom has no idea what read-aloud O.G. is talking about, so I'm not sure if they ever really had a Lion King 1 1/2 read aloud. O.G. brought us several Clifford and Arthur story tapes, but we all know that those don't compare to Disney.
Every morning as we approach the bus stop, Henry asks "Did (O.G.) bring the story tape?!" And every morning Thomas and I try to gently tell him that we doubt it.
I'm not sure why O.G. entertains me as much as she does- I think I just like seeing Henry interact with one of his peers. They have their little conversations (such as they are), and Friday he actually ran up to the bus and got on by himself for the first time EVER, chasing after O.G. and the elusive Lion King 1 1/2 read aloud. One morning O.G. reached through the window and started tickling Henry! I was ready for him to pinch her or shout something rude at her. But he just giggled, and then she walked back to her car. (!!!)
I've been glad to get to know outgoing girl's mom also. The first day that I got up my nerve to get out of the car at the bus stop and introduce myself to the other parents, I heard the whole story from her of how she and another mom had to fight our school district to get the kids bused to this school. O.G.'s mom told me that she doesn't think (new school) is perfect by any means, but that it is an improvement over what the district provides. That morning she basically told me what I wanted to hear- that I had made a good choice.
The most negative thing I can say right now is that I still feel communication is lacking. Some days we get those circle the smiley face reports home. More often we don't. One day Henry told us he had left his lunchbox on the bus and his teacher had given him an apple to eat. (Of course he didn't offer up this information- I had to bring it out with my interrogation skills.) I would have thought someone might have sent me a note home about that, (or even called me to ask me to bring in another lunch) but no. I sent an e-mail that night and got a response the next day, but after that I decided to just start a new communication notebook. There was one day last week Henry woke up at like 4:45 am. I wanted to send in a note, so they would understand if he seemed extra sleepy or grumpy. So I sent in a notebook and did receive a note back.
They send home fairly challenging homework every night, and Henry tackles it with absolutely no protest. This is very different from last year, and if he is working at school with the same agreeable attitude (which I can only assume he is) that is a significant improvement.
We are seeing a little more language, a growing sense of humor and, as Bill has noted, Henry seems "less stressed." When I ask about his day, Henry usually offers up whether he had art or music, and what they worked on in those classes. One night we were reading a Magic Treehouse book, and when he heard the character's name Jack, Henry piped up "just like Jack --- and Jack --- in my class!"
One silver lining I am trying to see in the lack of day-to-day communication is that it forces me to ask my son questions about his own day. Maybe he can tell me more than I think. One morning I was suggesting that he wear sneakers rather than crocs because they are safer "when you're in gym class or on the playground." "That's called recess," he corrected me.
"Right. Recess. What do you like to do at recess?"
"Mr. D is my best buddy."
"Do you hang out with Mr. D at recess?" "Yes."
"What do you guys do?" "We walk to the front desk, to see Mrs. S."
"Oh, really? Is Mr. D a teacher?" "Yes." "What class does he teach?" "He teaches in Mrs. C's class."
We have open house this week, as well as the book fair, so I will get to know all of these players a little better. I have offered to help in the classroom once a month, and hopefully they will take me up on that. (I had volunteered to help at the book fair, but they didn't need me!)

avenues

Henry started taking swimming lessons his first summer in the Easter Seals program- the summer of '04. We added gymnastics in the spring of '06. Summer of '07 we found riding lessons too. Of course his little brother wanted to try all those activities too, and how could we say no? Grandparents helped pay for the classes and lessons at times, but it added up.

One day this spring I got up the nerve to ask his special needs gymnastics teacher "do other families have some kind of financial aid to help pay for their classes?" "Why yes," she replied, "most of them do. Let me go grab one of the forms that I have to fill out, and I'll tell you who the agency is."

And that's how I found out about MRDD, my state's department of Mental Retardation and Developmental Disabilities. I called and they sent me some paperwork to fill out. Early in the summer Henry and I had an "intake" meeting, where they asked him a few questions to roughly gauge his ability level, and I received notice later in the summer that we were eligible for their services.

It turns out that they will pay for additional speech and occupational therapy, respite care, and bunches of other stuff that one's disabled child might need.

I am so happy to have found this agency, but also disappointed that I didn't find them sooner. Yesterday I had my initial meeting with a caseworker. He told me that he recently met with a new client whose 11-year-old child has Downs Syndrome. Why in the world, we wondered, wasn't that family told about MRDD before they left the hospital with that baby? Why isn't it someone's job to make sure that the people who need assistance find out about what's available?!

This caseworker handed me printouts about PDD-NOS and therapies for autism. Thanks. I could have used this stuff 5 years ago. We also elected to place Henry on the waiting list for a couple different kinds of funding available to disabled adults. We don't think that far into the future very often, and I like to think that Henry won't need any assistance when he is an adult. But if he does- even, say, someone to help with his laundry, these waivers will be there to help. (That's assuming, of course, that the current funding is available 9 years from now, which it probably won't be.)

It was nice to talk to someone who is familiar with the resources available to autistic children, but who also is neutral. He's not a parent who is swearing by this or that therapy. Through his experience with hundreds of families, he confirmed some things that I believe: other parents can be your best resource- talk to them and ask about what they're doing. But also, what works for one child/family may not work for another. He has known families who love the school Henry now attends*, and others who pulled their child out of the school.

As I write this, I'm a little ashamed that I should feel so affirmed by someone sitting in an office telling me to trust my gut about what's right for my child. But I guess for me, I put more stock in someone's opinion who can form judgements based upon real-life observation of the children that pass through his agency than I do a hysterical celebrity mom who demands that everyone see autism through her lens.

I'm rambling. The real point I wanted to make here was just that resources are out there, and you may not find out about them without asking questions. Never stop asking questions. A door may open up that you never knew was there.

The Easter Seals office has moved, and they no longer have a pool. The woman who gave Henry horse-riding lessons had a riding accident herself and broke her back. It would be easy to give up on those activities altogether. But Henry enjoyed those activities. They are good for him. I need to keep asking questions and look for new avenues for Henry to continue to pursue those interests.

*I am cautiously optimistic about Henry's new school. My mom reports that he participated happily in the Grandparents Day activities, and he has not argued at home one bit about doing homework- quite a change from last year. Knock on wood please.

"it's like a party here"

I wanted to write about a few fun/good things that have happened this week. And because I can't figure out how to move these videos to a different spot, I guess I will tell my stories in reverse order.
Last night we went to a professional soccer game- our first. Bill had purchased this package through Easter Seals that included 4 tickets to a baseball game (our city's minor league team), 4 tickets to a soccer game, and some kind of tickets for Magic Mountain. We never used the baseball tickets, and I doubt we'll use the Magic Mountain tickets. But I'm so glad we used these soccer tickets! The night was a resounding success!!
Henry watched the entire game with excitement. He seemed to really follow what was happening, cheering and shouting at the right times. Well, he made a lot of noise the whole time, to be honest. That's what I was trying to capture in the above videos- the way he was hopping around and making sound effects for each kick and header. It so happens, though, that both times I started recording, someone fell down (our opponents were the NY Red Bulls), he turned to announce this to me, thought I was taking his picture, and posed. I still posted both videos- I think they're cute (but I'm a bit biased).
I was just floored that the game held his interest like that. You can see that he brought some books with him, and held on to them the whole time, but he never once looked at them. It's been a couple years since Kate played sports, so maybe he has just matured, but we would always need to entertain and/or feed him at her games. I can't be sure if it's something about soccer, or the stars were just aligned properly last night.
Of course Thomas enjoyed himself. He got to meet the mascot, got a free little soccer ball that they threw into the stands, and daddy took him all the way to the top of the stadium when he started getting antsy.
I probably had the least fun of all of us- only because I was freezing my behind off. As soon as the sun went down and the breeze picked up, I was cold. My teeth were chattering as we walked to the car! But no one else was cold. That tells you how much fun they were having! If I hadn't hustled us out of there, we probably could have stayed to get players' autographs and stuff. We'll have to go another time!
The other story I wanted to tell is from last Saturday (the day before the storm). I was having Henry work on his "all about me" poster for school, and of course Thomas wanted to create his own "all about me" poster. (Note to self- always prepare for 2.)
I put on a group of Paul Simon cCDs, set to shuffle, and we worked for awhile. Then Henry moved on to a puzzle, while Tommy continued working carefully on his poster.
At one point I came in to the room, heard The Obvious Child, and started dancing around a little. (I defy you to hear that song and NOT dance.)
Tommy looked around and said "it's like a party here right now."
He elaborated: "One kid drinking water, one big kid doing a puzzle, and a mom dancing. That's a party."
Then he added: "And my new friend is my brother."
A party indeed. Does it get any better?

Ike reaches Ohio

I'm sure this post will induce eye-rolls from anyone living in Florida, the Carolina coasts, Texas, Louisiana...

But around these parts, we've never seen wind like this.

Sunday morning's weather report warned of a high wind advisory for the afternoon. And the winds rolled in around 3 maybe. We had just returned from our trip to the library, and Henry was settling in with a DVD he had borrowed.

A small branch fell from our tree, and the little tykes basketball hoop blew over. The strange thing was that there was no rain accompanying the wind, so we kept going outside to check things out. ("These are sure some high winds!") I was all geeked out about all the pinecones that had fallen in the backyard, and Tommy and I were heading out to collect them, when Bill said "I don't like the way those trees are swaying. I think it's dangerous for you guys to be outside." I rolled my eyes and we came in.

30 seconds later we heard a thump, and looked out the back window to see this:

That's when the power went out. Poor Henry just cannot deal when the electricity is out. Never mind that he normally spends lots of time doing puzzles or reading books. Those activities just will not pacify him when he has a movie he wants to watch.

Tommy, on the other hand, thought the whole thing was a great adventure.

I don't think that Bill and I conveyed too much worry, but Henry was so anxious about the electricity situation. He must have asked every 30 seconds are they coming to fix the tree that fell? Once I ran a quick errand up to the main street, and saw that trees and branches were down all over town, I knew that they wouldn't be fixing our problem too quickly.

A large branch came down from another neighbor's tree:

Every yard in our county looked like this or worse:

Yesterday and today all the schools are closed, as are many businesses. 330,000 people were without power yesterday and they are estimating that some may have to wait up to a week to have it restored. Many of the electric company employees had been sent down to Texas to help out, and are having to be called back.

Our power came back on yesterday afternoon, so we are lucky. I am laying low this morning, though, because yesterday I ran around like a chicken with my head cut off.

Despite listening to the news, I didn't fully grasp the scope of the situation. We had no electricity, no phone (our battery backup had run out), and cell phone service was very spotty. I text messaged the kids' sitter, and she had no power either. The university I work for was not closed, so I assumed that they had power. I packed the kids up, grabbed some movies they could watch while I worked, and off we went.

We'll stop on the way to get some breakfast! I promised.

(Our house did sustain some damage to the siding. Looks like it used to be painted yellow.)

So, let's think this through together. 329,999 other people cannot make breakfast at their homes either. How crowded do you think the restaurants that ARE open are going to be? That's right- pretty damn crowded. Unfortunately, Henry and Thomas' mom did not think that through, and instead drove to Starbucks (line out the door), Tim Hortons (line out into the street), McDonalds (line out into the street stopping traffic), etc. etc.

Add in a couple other stops to places that turned out to be closed, and all the intersections that had to be treated like 4-way stops because the lights weren't working, 2 whiny kids saying "but you said we would get something to eat! I'm huuunnnggryy!" And you've got me losing my mind.

We finally found a grocery store that was open, went in and bought cookies, donuts, coffee cake and croissants!!! Henry also picked up a pack of cherry tomatoes. All the refrigerated areas were covered with sheets of plastic, so I couldn't buy any yogurt or Henry's beloved sausage links.

It's just as well, because when we finally got to my office, the power was out there too. We stayed for a few hours, which I finally realized was silly, and we came back home.

I like to think that I am a pretty rational, calm person. But this was a scary experience. If my power were really out for 7 days and there were no grocery stores, restaurants, or gas stations in operation?? What about parents of infants who need to buy and heat formula? Mother nature lets us think that we're in charge most of the time, and then gives us a little slap upside the head to remind us who's boss.

Henry's teacher e-mailed me back that same afternoon. She said I should feel free to contact her anytime, and explained that they'll also be sending home this form to report on Henry's day:

It looked like she circled the faces on this one, but subsequent forms have been self-evaluations by Henry, and all has been smiley faces.

She also said Henry is a joy to have in class. Well, duh. You can save all that teacher-y sunshine-y stuff for another mom, Miss C. Has he pinched anybody yet? I guess, on that front, no news will just be good news.

Friday evening Henry actually said "I'm going to miss my school. I'm going to miss my teachers." (!!!) I'm not going to put too much stock into that, as I think he was just plugging something in to his "I'm going to miss..." repetition. But it was still nice to hear.
______

Thomas has been quite into coloring lately. For the past month or so he colors in the morning, colors in the evening, brings coloring books in the car... It's nice to see our huge collection of coloring books actually getting colored in. (Henry just likes to look at them.) I worry slightly when Tommy cries about something not being quite right- like he colored outside the lines, but he doesn't seem to be overly compulsive about it most of the time.

The other day he picked up something that Henry had made in school last year and said "why does Henry color so messy? Oh, I know, it's because he's autistic."

I did a double-take, but then said, "well, that's true. He's not as good at some things as you are. Some things, like coloring, are just harder for him, and that's because he's autistic." Well that was easier than I thought. Now Henry's younger brother understands his disability.

I know it's not really that simple, but then again, it is. To Tommy, Henry is Henry and Henry is also "autism", so Tommy knows about autism. I hope he will someday understand the kid next to him just a little bit better, like our friend Brian does. (Brian's mom's blog is private, so I can't link to it.)

This week Tommy started fall soccer, and also goes back to preschool. He is now one of the bigger kids in both settings, and although he was worried, as always, about being shy, he really wasn't shy at all. He's growing up.
__________

And just when I think I might be getting a grip on things, I'm really not. Henry had his 9-year checkup yesterday, and daddy took him. (Henry's doing fine. 15th percentile as always :-) Then today I realized I needed to get Thomas' medical form signed before he starts preschool. Oh, how dumb am I? I should have sent it along with them yesterday.

I faxed it over, only to have the doctor's office call and tell me that Thomas' last checkup was in February of '07. His 3-year checkup. I never took him for a 4-year checkup. Hello, youngest child, welcome to neglect.

So I need to hurry up and get him in for a checkup tomorrow so that he can go to preschool. 2 well-child visits to the doctor's office in one week. Not the most efficient way to operate, but it's all we've got.

Just keep swimming, just keep swimming.

why I e-mailed Henry's teacher today

Because when I try to ask Henry a (to me) simple question about his day, here's what I get:

G: Henry, did you eat the Spongebob Cheez-Its I packed in your lunch today? (Always hoping to stumble upon something new that he will eat.)

H: I didn't eat them.

G: Oh, well, where are they then? Did you throw them away?

H: No.

G: What happened to them?

H: Mr. J took them.

G: Mr. J took your Spongebob Cheez-Its? Did he trade you for something else?

H: Yes.

G: What did he trade you?

H: The Spongebob Cheez-Its.

(Bill laughs from the other room and then takes a stab at it): What did Mr. J give you to trade for your Spongebob Cheez-Its?

H: Nothing.

G: So what happened to your Spongebob Cheez-Its?

H: I threw them away.
_______________

Not that I need a note home every day about whether he ate his lunch or not, but I would just like a summary of the school day that has not been passed through the Henry translation screen.

He did tell us about art class yesterday. They drew lines: "jagged lines were mountains, wavey lines were water, swirly lines were clouds" (he worked on the word swirly for a bit).

And he showed us an injury on the palm of his hand: "I was so excited to get my cupcakes! But I fell." It sounds like he slipped and fell to the floor while hurrying over to get his birthday treat to share. Can you stand it?

all-around, a satisfying weekend

A new puzzle--

An uncle who is ready and willing to play with all his cool old toys--

A Grandpa who takes you on adventures, like checking out the attic--

(Perhaps this photo is blurry because mommy was so nervous. Even more so when she heard Grandpa instruct "now stay on the wood beams- don't step on the white part. It won't hold you.")

Temporary tattoos and a slip-n-slide--

Wearing no shirt all day long on your birthday, sitting outside eating watermelon, looking at the cool comic book your uncle gave you--

Covering your ears and blowing out the candles--

And she's not pictured, but the big sister joined us for the celebration. Tommy and I took her home and I saw her apartment for the first time. I was left with mixed emotions: a little bit excited for her; I remember how it felt to go out on my own, a little bit sad to leave her there alone.

I know that's weird as she hasn't lived with us for months now. I guess old mommy habits die hard.

Happy birthday Henry! Thanks for making me your mom 9 years ago.

Well, since I seem to have conveyed all my anxiety well enough to pass it on to everyone else, I feel like I should write a quick post to say that the first two days have seemed to go ok. It's hard to really evaluate, since all my information is coming from this young man of little words. He was already deep into a Disney movie by the time I got home Monday (The Sword in the Stone), and wasn't really psyched about telling me about his day.

I mostly asked him a lot of poorly-constructed questions, so that he just kept answering "yes". (Did you eat your lunch in the cafeteria? Did your teacher eat with you?) When I asked about recess, he responded "I didn't go down the slide." I can only infer that someone wanted him to go down the slide, but he refused. Or he actually did go down the slide, but doesn't want to talk to me about it...

He brought home a "madlib" worksheet he had done at school. Each page had an incomplete sentence- he had to cut out a word to fit in the blank, such as "I come to school in a ____" and he had cut and glued the word and picture for "bus". One page read "My teacher is a real ____." Henry had filled in the blank with "sweetheart". I asked him what some of the other choices were. He looked up at me with an impish smile and said "monster"! So I'm glad he didn't choose that response.

I wrote a note to his teachers yesterday, asking for guidance on Henry's birthday treat next week. They don't do daily communication notebooks at this school. But maybe I'll just force my own by writing them a note every day.

Yesterday evening, when I asked about school, he said "I went to art!" Henry's never been much into art- too challenging to his fine motor skills- so I was happy to hear his excitement. I asked what they did in art and he said "I made a dragonfly!"

This morning he started saying that he didn't want to go to (the new school), he wanted to go back to (the old school). I told him that I know it's hard to start something new and that it would take some time to get used to (the new school). I decided not to push it, and declared that by Halloween he would really like his new school. (Hopefully it happens before then, but I thought that time frame might give him the idea that it would be soon, but not right away.)

Thank you everyone for your support, and I'm sorry for all the nervousness spilling all over the place. As you know, the new school decision has been a stressful one. Of course all parents worry about their children. But our autistic children ratchet that up a level or two. It was very comfortable to have Henry at L's house this summer- a comfortable safe zone where he could also spend time with his brother. But I was caught offguard a couple different times when I realized that L couldn't understand things Henry was saying to her. She has known him his whole life, and spent the most time with him of anyone, outside our immediate home. She loves him like he's her own child. And she still doesn't know what he's telling her half the time. Really eye-opening. And really frightening, if you think about it too much: there are only 4 people in this world who understand everything Henry says.

How am I supposed to send him out in the world, knowing that?

It doesn't help that I've been reading a lot of news stories that I shouldn't. I read about bad things that happen to children, as if I think that reading about them will prevent them from happening to my kids. And then the details get stuck in my head and shake loose in the middle of the night.

This cloud will blow past- don't worry. By the time we get through this fun-filled long weekend and celebrate Henry's 9th birthday Monday, I will be all sunshine and daisies again.

Just keep swimming, just keep swimming... maybe we should all get Dory tattoos (or t-shirts, for the needle-phobes.)

the circle of life

Could I be any more cliche than this? Henry watched The Lion King a couple times this weekend and took 2 different Lion King books with him to his first day at the new school, so I just can't avoid using the circle of life phrase.

Henry has been feeling a lot of anxiety about this change to a different school. But the good news is that he's been expressing that verbally without too much other acting out. This morning he told me he didn't feel too well. And that he was nervous about going to a new school.

Of course I understand how he feels. How nervous do any of us feel when we start something new? He's not quite 9 years old and loves his routine- gulp. I can't let myself get too far inside his head or I'll be trying to smuggle him in to work with me and "office-school" him to never let him out of my sight!

So I tried very hard to remember that a mom's job is to say "I understand how you feel. It's normal to be worried about something new. But you'll be fine. Everything will be great. I think you'll love your new school!"

I remembered that a new infant was starting today at L's house, and I thought about how his parents must feel- leaving their baby for the first time.

I told Henry to think about how scared that baby might feel, but that we knew he would have so much fun at L's house and soon he would love it there.

There was a little mix-up with the bus, so we had some extra time to snap photos while waiting. It finally arrived, although it stopped about half a block from where I had been told...

Henry sat down across from a chatty 5th-grade girl. She introduced herself and asked us our names. Henry pointed to her Camp Rock binder and said "Camp Rock".
"I have a Camp Rock binder, Camp Rock notebook, Camp Rock folders, and Camp Rock pencils", she replied.
"Wow" I said.
"I'm a big fan" she explained. Then she offered to help Henry find his classroom.
This feels as hard as every other first.