He has a nickname at school: Hank.

There's a girl in his class with a crush on him.

When I toss him his jammies or throw his school clothes onto the floor, he just begins putting them on, without a word of instruction.

He still hums and hops when he's excited. Still does the v-sit thing and flaps a bit too.

He still eats with his hands, but will try a teeny-tiny taste of something new without arguing.

He watches the same clips on disney.com over and over and over and over and over, but will usually stop when the timer beeps.

He still doesn't choose to go outside much, but will go out agreeably when we force the issue, and has some fun once he's out there (see video below).

He did his ALGEBRA homework with no problem this week, with the help of a number line. (7 plus what number equals 13?)

Henry's always been on the.. ummm... easier end of the spectrum. Meaning his behaviors were never to the extreme of being debilitating or dangerous to the rest of the family or to himself. But he has been throwing "tantrums" at school ever since he first set foot in one. When he was 5, 6, 7, 8 he would throw chairs, knock over tables, kick, scratch and pinch. It was unpredictable and unmanageable for the teachers.

Now it's not happening anymore. I can't guarantee it won't happen again. I can't say that it's because of his new school or just growing up. Maybe he's just feeling more comfortable in his own skin.

I can't promise anyone that what works for my kid will work for yours. But I know you all love your kids just as much as I love mine. That's why we all found each other in the first place. And I know that even though it's the corniest thing in the world to say, loving your kid and talking to your friends and problem-solving your way through this stuff will work.

Now let's get out there and enjoy the weekend.

(Sorry this is sideways. When will I learn?!)

hello out there...

So here's the thing- we're really happy with Henry's new school. I keep trying to put my finger on what it is, and find a good way to say that things are good without sounding like I'm criticizing every other type of classroom- and it's just paralyzing me.

So, just to get something out here, since I've been having blogger's block for a couple months, some things I love about Henry's school are...

--He gets art, PE and music. In his previous setting, activities in these specials often surpassed his abilities, so he wasn't included.

--He is in a classroom with 16 other students, and 5 teachers. He has lots of peer interaction, and enough teachers that he doesn't become too attached/dependent on one in particular.

--He is responding to the classroom behavior expectations- worries about getting a strike (consequence for bad behavior- 3 strikes and you're out) and gets excited about coloring in a square when he has an extra good day (once each square of the picture is colored in, the class gets a party)

--Since the 1st of the year, they have been selecting a "star student of the week". They make it seem like a reward for good behavior*, but I'm sure that every child will eventually get a turn. Henry was star student the week of Jan. 19, and he LOOOVED it. He was bursting with pride. Every week he reports to me whose turn it is to be star student, and adds that he wishes he could be star student again.

*The week that he was star student, the class newsletter said "Thank you Henry for being a great role model for your peers. Simple steps to be the Star Student: Follow classroom and school rules, Participate in class, Turn in daily homework, Set a good example for peers."

--Teachers and students seem to appreciate Henry for who he is. We've always heard "oh, he's so cute" "he's just darling" from teachers, and while that's nice to hear, it can at times sound like your child is not being taken seriously. Or like "I can't understand a damn word that the kid says, but he sure is cute with those glasses!"

My impression at the new school is that, while they do appreciate his looks and charm, the adults also have high expectations for my 9.5-year-old son.

The bigger picture that makes all of this work is, he is in a class with his peers (other children with autism- those peers. Not typical peers), but his education is molded to fit his individual needs. When I observed a couple weeks ago, a group of 6 students (including Henry) was working on their spelling words. He is in a different group for reading, another for math, etc.

In his previous school, I don't think he ever felt part of a class. When he was included in the typical classroom, he sat in the back with an aide, and as long as he wasn't disruptive, it was considered successful. But that felt like visiting the second grade, not being a part of it.

In the previous placement Henry had one teacher, 2 aides, and the teacher's supervisor was miles away. At the new school, teachers have so many colleagues, all expert in teaching children with ASDs, right in the same building. It has to make their job easier.

Throughout the years all of Henry's teachers have tried their damnedest. All of them. All of the aides too. But there just wasn't the manpower required to make it work this well. I question whether there is enough manpower in any public school system? But God knows that I'm no expert, so that's a debate for wiser heads than mine.

Some of the things Henry is doing lately that I'm geeked about (some are small, but you other moms get it that the proof is in the small stuff):

--Calling us "mom" and "dad" vs. mommy and daddy.

--Answering "yeah" rather than "yes". I know this is a pet peeve for some parents, but to me it sounds so much more natural.

--Getting off the bus, waving and saying "hi mom" first- before I greet him.

--Offering up tidbits about his day without being asked- especially if he's gotten a strike or colored in a square that day

--Using his body/muscles in new ways- pushing the shopping cart and then stepping up to ride on it- think about how much upper body strength that requires! And last night he "walked" his feet up on Bill while pushing up with his hands (can you picture that- like doing a pushup and walking your feet up the wall...)

--Awesome back-and-forth with his brother: "you're bothering me", "can you move please?", etc.

--Last night Henry inquired "what are you making for you to eat?" (He was already eating mac & cheese.) I misunderstood the question at first, thinking surely he was asking what else I was making for him to eat. But no- he just wondered what I was having! Just making conversation!

"A tuna wrap" I answered.

"Say that word again" he replied.

So I repeated, and explained how I was making it.

"Do you want to see?" I asked, thinking for sure he would gag when he saw (and smelled) the tuna salad. But no- he remained interested. I spooned the tuna into the tortilla and wrapped it up. "A tuna wrap!" he proclaimed. So proud of his new knowledge.

"Do you want to try a bite?" I asked.

"No thank you." No surprise there.

But who knows? Maybe next time he'll want to help me make it. Maybe one day I'll lounge on the couch while my son makes me a tuna wrap. It could happen. Anything is possible...

what's been happening

Henry did fantastic going back to school last week. I have hesitated to write about it because I know many other kids had a rougher time getting back on schedule, and I don't want to seem like I'm bragging! But we all know that what goes around comes around, and I'm sure we've got a rough week in our future.
Monday he got off the bus in a cheerful mood, told Bill he had "a terrific day", and that he wanted to "go home and play with that Wii" instead of going to daddy's workout place. Bill obliged, and they had several rousing games of bowling and baseball. (Back in the summer I wrote about how much Henry enjoyed playing Wii. We didn't end up getting one for his birthday, but did score one for Christmas.) I can't say enough about the Wii. Not only does it get our sedentary guy moving, and trying new things, but he loves to play with others, and cheer them on. "Pick up that spare Daddy!" he'll holler, frame after frame after frame...
The only downside, as you might have suspected, is getting him to stop playing. He becomes quite single-minded and frantic about playing, and shouts and cries when it's time to stop. Hopefully that will get better over time.
Here is a little video from Christmas day at my Mother-in-Law's house. Henry is bowling and you can hear him announce "8 pins!" and then "1 pin!" He also likes to mimic some of the game noises...


Another cool thing that happened Monday was that Henry sat and watched the first hour of the Fiesta Bowl with Bill. He really watched and paid attention to the game, and echoed every single thing that his dad said ("Ahhh- you gotta catch that!") It was pretty neat to see and hear!
Tuesday evening Henry told me his teacher "wrote a very special note". I checked his notebook, and here's what it said:
Henry has been an excellent A+ student! I told him that I would write a very special note. We are very pleased with Henry's hard work and excellent attitude! Keep up the good work Henry!
I can't be sure what was behind this, if it was a bribe of some kind? But whatever the story behind it, I loved reading it. A hell of a lot nicer to read than the notes last year about how he was hurting his friends. And a good reminder that positive reinforcement works with kids. All kids.
Considering what a good week it was, I was caught off-guard by the sadness on Friday. You know, the sadness that is always there, beneath the surface, when you have a child with a disability. I was reading through all the papers that Henry brought home, and there was one announcing get-togethers for siblings. The flyer included quotes from kids about how much fun the groups were and explained that they discuss the hard parts and the good parts of having a special-needs brother or sister.
And I just started crying. Bam.
Um, hello? Your son was diagnosed with PDD 4 years ago. His brother and sister are both siblings of a special-needs kid. This is not news.
But sometimes you see it in a different context and it somehow strikes you anew.
And that brings me to another item I wanted to write about. We have talked to Tommy a little bit about Autism- explaining that some things are harder for his brother, etc. So one morning before school they were watching 101 Dalmations. There's a scene where all the dalmations are supposed to go to bed, but one keeps watching tv. So we're driving to the bus stop and Tommy pipes up "mommy, maybe Lucky* is Autistic. Because he gets right up close to the tv and doesn't want to stop watching it, just like Henry."
Then he turns to Henry and says "Henry, do you know that you are Autistic?" And I just about drive the car up onto the sidewalk.
Henry doesn't even look up from his book, just replies "yes".
So there we have it. All my worry about explaining stuff and the sibling relationship was for nothing.
Here are the brothers having a sword fight on Christmas- the weather was beautiful in Charlotte:

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 :-)

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.
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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.

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.

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.
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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.
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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.

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.)

you are the consequence!

Let's just all put our heads down and try to make it through the next few weeks, ok? It seems like families all over the blogosphere are worried about the new school year starting, and over here is no exception. Henry's been talking a lot about missing his old school, missing L when he goes back to school, missing me and daddy, missing Kate.

This is one of his ways of expressing his anxiety. I don't know that he will actually miss any of these things, but it's a phrase he's found that conveys hey, I need some comforting. In reading back through some of my early posts, I remember that he used to miss things much more regularly. And back then he had all his pronouns backwards. So we have traveled from that point to this: where we have just occasional anxiety, with the correct pronouns. But the worry for the mom feels the same.

And the worry spills over to Thomas. He is not starting school yet- has one more safe year at L's house before the big changes start. But a couple of his buddies from L's are going on to kindergarten, and she is taking in 2 new infants. Tommy will be the big boy that the little ones emulate. Time marches on and on.

In a lighter vein, here is how my sons looked when we left the house this morning.

Longtime readers may remember that Thomas used to be positively traumatized when required to wear long pants in the winter. Well, all of a sudden, the past few weeks, he has been digging through drawers to find long pants and long-sleeved shirts to wear. And a long-sleeved shirt with a short-sleeved over it is even better. He thought he looked totally fashion today- down to the sunglasses.

For his part, Henry has taken to sleeping with no shirt (I guess he learned that from Daddy). He often sleeps in boxer shorts and then requests to just wear those for his underwear that day. Well, today he said "I want to keep my jammie pants on under my shorts." Only he was wearing long pants this time. Don't worry, I brought proper changes of clothes for both of them, in case L takes them out in public today.

Yesterday was a rough one for both boys. I was just thinking that we had almost made it through the summer without incident (remember Thomas' black eye last August?), but no such luck. L called yesterday to tell me that Tommy had been stung 4 times (by a wasp or hornet, we think, as bees can only sting once) on the back of his knee! Of course I had a heart attack, worrying that he would be allergic, but he was perfectly fine after she put some baking soda paste on the stings.

Henry's pain yesterday was of a different sort: the sting of shame, perhaps. At our last visit to the library (Monday), I borrowed an X-Men "junior novel"- a chapter book with no pictures except for a few pages in the center, with photos from the movie. Although Henry is a very good reader, he prefers large storybook-type books with lots of pictures. I was hoping to force his comfort zone by having him read this chapter book.

When I called him up for a bath Tuesday night, he had, clutched in his hands, the photo pages from the library book. Torn right out. I couldn't believe it. Henry has never ever damaged a book- library or otherwise. I guess I took it for granted that he understood that you aren't supposed to damage books. But maybe he just was never motivated to do so before.

Heavy sigh. So when I picked him up yesterday, I told him that we were going to go back to the library, return the damaged book, and tell the librarian he was sorry. Henry did not like this plan at all. He argued a bit and said he didn't want to go. I replied by saying that this was the consequence for damaging the library book.

He came over, pushed me right about my rib cage, and said "you are the consequence!"

You almost feel sorry for the kid because you can tell he wants to really tell me off, but he just doesn't have the language. He did a lot of crossing his arms, planting his feet, and saying "hmph!" on the way to talk to the librarian. He looked like he was going to cry and only managed a "sorry", while looking down. But that was enough. I feel like the point was made- I hope he learned a lesson. (Oh, and the librarians are super-nice and know him and I had called beforehand and talked to them, so they were very kind to Henry.)

The book only cost $5, so I am going to make him do a few jobs to earn the money. (In fact, I bribed him to pose for the photo above by telling him he could earn $1. Note his unhappy face.) On the way out of the library I stopped to give Henry a hug and asked if he felt embarrassed. He said yes. It's so hard to help him understand his emotions without putting words in his mouth. Oh, he also attempted to convey his anger toward me by declaring "you are not my mom!" I just brushed that off and said "of course I am." Luckiest mom in the world, even on a day like this!

autism resource

I received an e-mail from Easter Seals today with an interesting link:

Information on Autism Services in Your State Now Available

Easter Seals and the Autism Society of America have prepared a state-of-the-state report of autism services in the 50 states, the District of Columbia and Puerto Rico. The profiles highlight the number of children with autism, private health insurance coverage for autism, and other state-led resources. This information will be regularly updated throughout the year.
View your state's autism profile at http://www.easterseals.com/autismprofiles.
This information may already be out there, but I've personally never found such a simple resource to see even information about my own state, much less the rest of the country...

Tonight we have "meet-the-teacher night" at Henry's new school. Now, before you get all excited and think that I kicked some school district butt to get him in, let me explain.

It turns out that, if you can't get your school district to agree to send your child to the private school, (I couldn't, not without calling an IEP meeting which couldn't be done until after school had already started) you can send him to the "community school" (called charter schools in most other states) arm of the same school. (If there is a community school slot available, and if the spot is offered to you.) You withdraw your child from the district of residence and enroll him in the community school.

Holy shit, this stuff is unclear. One person tells you one thing and the next person doesn't know anything about that, and you send an e-mail and leave 15 messages and wait a week to figure out what to do next. I feel like I've been through the wringer.

It doesn't help that my husband is still not drinking that kool-aid, while I'm guzzling it by the gallon. At least he's willing to give it a shot, seeing as I'm so flipping sure about this.

I'll agree with him that the place has a bit of a cult-like feel to it. Everyone is so friendly and smiling and talks in such soothing tones. But I like to think that that's because they work with autistic kids all day, and friendly, smiling and soothing are good ways to be in that environment--not because they're trying to brainwash us.

Our school district's refusal to agree to place Henry here just reinforces my feeling that they don't really care about my child. And their argument that mainstreaming in the public school prepares my child for the "real world" he will someday work and live in holds no merit with me. You know what will prepare my child for the future? Being in a safe, nurturing, understanding, respectful environment that works on his weaknesses and works with his strengths to give him an excellent education.

The "real world" can be a pretty shitty place, and I don't see any other parents going out of their way to prepare their kids for that. Why should I be expected to?

I think Bill summed it up pretty well with this analogy: a couple summers ago Henry played t-ball through our city's parks & rec dept. We told them up front that he had autism, and they were quite willing to work with him and include him. And it was fine- it was a decent experience. But then this summer we found the Miracle League. They did more than just let my kid play. The team was made for kids like him, and parents like us, and it was more than we could have hoped for. This is my hope for our new school.

I've realized that part of this is selfish. I went to a parent orientation meeting the other night, and had the most unusual feeling as I pulled into the parking lot full of cars with autism ribbons on their bumpers. The feeling grew as I looked around the room and saw parents nodding and smiling at the school founders who were speaking. I think this feeling that I'm not so used to is belonging. As Drama Mama would say, these are our people.

Just as my son will no longer be relegated to a room at the end of the hall, I will no longer be relegated to the edges of the parental realm. I would not have participated in the PTO at his old school, because he didn't really participate in the school's activities. This new school requires a lot more parental involvement, and I think that will be good for me- for all of us.

I was telling a friend about the baseball analogy- a friend who's son is 10 and plays select-league baseball. I said "yeah, maybe Miracle League isn't 'real world' baseball, but I don't care." She interrupted me and said "Or maybe Miracle League baseball is 'real world' baseball. Just as much as our league is. It's about giving everyone a chance to play."

today

I'm a libra, see, and I guess that's why I need to measure everything. Why a vacation has to have both a glass half full and a glass half empty point of view. Why I need to always take the other side of every argument (according to my husband, anyway). And why a day like today has to be remembered not only for the good that happened.

Our interview for the private autism school was very good. As advised, I really tried to listen to my gut throughout. And I got a good vibe. This spring I started a post (but never finished it) about a new private autism school that I visited in my quest for a summer placement for Henry. I was near hysterical by the time the tour ended. You could say my gut didn't like the place.

Because of that experience, my expectations for this more established school were heightened. I was told when we scheduled the interview that they would be getting to know Henry, we would be getting to know the school at this time, and then I would be contacted later on with their decision. But the administrator who met with us told me after about 20 minutes that she thought Henry would be just right for the position available, and she would reserve it for us. (I attribute this not only to my son's charm, but also to this woman's soft heart. She told me that she's only allowed to do a certain number of intake interviews, because she has such a hard time turning anyone away.)

My head is spinning. The place where we interviewed was the high school location (a former athletic club). The elementary school is several miles away, in a former day care center, and we have scheduled a tour there later this week. I mean, I can't just sign my kid up without visiting the school!

If you're interested in knowing more about the school, e-mail me privately. In brief, they have around 300 students in preschool through 12, and actually have some graduates who are remaining to take community college classes. Henry would initially be placed in an "intensive educational and social classroom" with the aim of being quickly integrated with the peer models.

After we briefly discussed Henry's strengths and weaknesses, Dr. M told me that they would be likely to work closely with Henry to determine why he has such a deficit with math, but also would encourage his reading strength "focusing on his interests", to see how far he could take this ability. "Maybe he could help in the library" is another idea she tossed out, which just about made me melt out of my chair.

We stopped over at the elementary location, just to see where it was and to schedule a tour. Things were chaotic, as it was pick-up time for the summer program. But I kind of liked that. I saw lots of affectionate, smiling teachers, smiling kids, smiling parents. Kind of like any other school, but with a bit more oversight. And as we were getting back into the car, a young woman driving by smiled and waved. It was the same teacher I had met at gymnastics, back when I started thinking about this school again. I haven't seen her since, but she remembered us. Seemed like a good sign.

Assuming we don't think of any reason why we shouldn't grab this opportunity, my next step is to contact the special ed director for our district and basically ask her if they will pay for Henry to attend this school. Dr. M thought they might, because she thinks it's actually cheaper for them than the county program he is now placed in. But if they don't, we will have other options.

Now I guess I was riding some kind of uber-autism-mom wave after the interview, and took both boys to Toys R Us. After exhaustive consideration, Thomas picked out a Batmobile. Henry picked out a 101 Dalmations DVD, which we already have. He's been talking about it for weeks, ever since he lost the papers that were in the first copy.

I've been trying to use logic with him, which is, of course, useless. "Henry, I really don't want to spend $20 for a DVD we already have, just so you can get the papers inside."

His response? "It doesn't cost $20."

Um, actually it does.

I'm not usually one to ask for special treatment because my son is autistic. But today I decided to give it a shot. I went up to the customer service counter, explained the situation, and asked if there was any way we could open up a dvd, take out the papers, and they could, like, wrap it back up and still sell it. A manager was called over, who listened politely, but answered in the negative.

So I bought Henry another copy of 101 Dalmations. And now I'm pissed. I'm pissed because if I were Jenny McCarthy and had a million dollars, I would just buy my kid whatever he wanted to satisfy his perseveration.

But, if I were Jenny McCarthy and went on Larry King and talked about how my son loves the papers from inside DVDs, every yahoo in America would pack up their DVD papers and send them to me.

So, that's why today had a little bit of bad in it, but mostly good :-)

And I do have some other ideas about the DVD papers- I can try asking movie rental places or libraries. And if anyone out there would like a copy of 101 Dalmations (minus the ads inside of course), let me know.

resigned

Henry got sunburned this week.

This is good news. Henry was out in the sun long enough to get sunburned. Even though he was wearing sunscreen. Just like the rest of the kids at L's house. Today looks to be the 3rd day this week they'll spend at the pool, and come home worn out and hungry. That pool pass I bought might actually have been a good idea.

So we take some steps forward.

Sometimes, on the other hand, we feel stuck in one spot. Take graduation day, for example. As you may have gathered from the family photo, Henry was not being very cooperative that day. Call it dysregulated, call it oppositional, call it difficult, call it autistic. Whatever you call it, it's pretty ding-dong frustrating.

Oh, we brought books and Leapsters with us to entertain him- I didn't just become a mom yesterday. But the thing is, on an occasion like graduation, all bets are off with Henry. I think he's reacting to several factors:
-A new situation. Never been to a graduation before. (The location, however, was quite familiar. The high school, middle school, and Henry's elementary school are literally connected in one big campus. Graduation was in the stadium.)
-Boredom. It was hard to hear much of the ceremony, and Henry wouldn't have been interested even if he could hear it.
-But there was too much distracting input for him to just zone out with a book
-Heat
-And this is a biggie- emotion. I think Henry can sense when a situation is highly emotional, and he doesn't like that vibe. It makes him uneasy. So it becomes his mission to make the rest of us uneasy :-)

So he started right in with stepping on our feet, pinching us, squeezing our fingers and hands, trying to push us off the bleachers. All the relatives tried their best to help by asking him questions, etc.- trying to distract him. (Amateurs.) It didn't take long before I left with him and walked around the school and over to his playground. That was fine- I actually was initially glad to have the distraction. It kept me from sitting there just thinking and reflecting and making myself cry.

But I did want to actually see Kate walk up and get her diploma, so we ended up back in the stands, straining to hear each name as it was called. Henry settled on a new method of torture: pressing his forehead against my jaw with all his strength. I just let him do it- it kept him quiet. We sat that way for quite awhile, until all of a sudden the heat of his head against my sweaty face got to me, and I realized what a bizarre little scene we were making.

"Henry, why are you doing that?" I blurted out. (Questions like this are totally pointless, and are usually met with "Why are you doing that?" shouted back at me.)

But this time he calmly replied "I'm the invisible man" and went right back to pushing against me. I have no idea what that meant, but it broke the tension and made my sister-in-law and me both laugh.

By the time we were taking the pictures, a few half-hearted attempts were made to get Henry to turn around, but I think everyone knew it was a lost cause. It is what it is- a moment in our family's life preserved for history. (Bill did capture him before heading home, waving out of Grannie's sunroof.)

I want to think of a better word than resigned. I want to say we are resigned to life with autism, except I want that to sound more positive.

Here's another example: that same weekend we went to a backyard party for a friend (but we did not know the people who were hosting the party). Henry marched right into their house and asked for their movies.

This probably would have embarrassed me a few years ago, and I would have spent all night trying to get Henry to stay outside with the other kids. But now? Now I don't miss a beat- I just explained that he'd like to examine their collection of Disney movies, would probably lay them all out on the floor, and would want to watch one. I didn't apologize and I didn't even explain that he has autism.

He's just my kid and this is what he likes to do to be comfortable and that's what you get if you invite me to a party. (Not that I get invited to many parties.) Later I found him in the daughter's room, rummaging through her bookshelf, looking for Disney books. That's not appropriate behavior. But I'm just too tired to fight it anymore.

I don't know whether that's something to be proud of: I accept my son the way he is and everyone else should too.

Or whether it's something to feel defeated by: Autism has worn me down until the inappropriate has become appropriate, or I can't tell the difference anymore.

Maybe both are true, depending on the day and my mood.

(This post ended up sounding mopier than I really intended. Sorry. My allergies are making me feel crappy and we are getting ready for a biggish out-of-town trip that has me a little stressed. Happier post next week about the super-fun wedding we'll be attending in Virginia...)

Autism Awareness month is making me a little uneasy. I wonder what I'm supposed to do to acknowledge this? Because I live Autism Awareness all the time. People who come into contact with me and my family learn about autism through us. I don't shout at them about cures or about vaccines, I just am and I just talk and I think they get the real story.

I frankly become exhausted by acquaintances who say "I saw Jenny McCarthy on Larry King last night. She said there's a special diet that can cure autism." Yeeeaaaahhhh. Sigh. Or even friends who say "I watched part of Autism: The Musical. Wow- it looked so hard to live with some of those kids." Yeeeaaaahhhh. It's hard to live with any kid on a given day.

I don't know- one of my kids has autism. He needs special education. Certain situations are challenging for him, and thus challenging for the rest of us, his family. I want people to be understanding of that and I'd like the medical community to continue to probe what can be done to make my son's life easier.

But my other children find different situations challenging. I want people to be understanding of them, too. I think if you gathered up all my mommy worry in gallon jugs and measured it, you'd find equal parts of lifetime worry devoted to each of the 3 kids.

Finally, this may seem unrelated, but it just really seems right to me today: the folks found guilty in my jury trial last month have been arrested in an attempt to leave the country. In my world, where few things seem to be cut-and-dried, black-or-white, I just like knowing that these people did wrong, they were found guilty, they are proving their guilt by trying to run away, and they were caught by the good guys. Sometimes a good cops-n-robbers/law-n-order story just really hits the spot.

-Last Monday morning, as I was watching the list of school closings, I noticed the name of the private autism school in our area. That got me thinking, just a little.

-Later that day, I read this post about a Dream School. That got me thinking just a little more.

-Thursday morning I called the autism school and left a message asking if we were still on their waiting list.

-Thursday at noon we had our MFE and IEP meetings. I summed the meetings up to my mom (and hopefully didn't offend her) by saying "I felt like I was sitting at a table with 10 of you." What I meant by that was; almost everyone around the table seemed smitten by Henry. They are all charmed by his intelligence and his messy blond hair and his smallness. They go on and on about all the things he can do well.

Now, there are a lot of things he can do well, as you readers know, because I brag about them here all the time. And I'm certainly not suggesting that the specialists at Henry's school should bombard me with the things he doesn't do well! I think I am just getting the feeling that no one is challenging him, aside from his main teacher. And, because she challenges him, he exhibits behaviors with her that no one else sees, and these behaviors prevent her from being able to get farther with him. See the cycle?

When he was 6, it was enough that he could function in a classroom and get something out of his day. But now I feel like we need to have bigger-picture goals, and instead of trying to get this kid to fit in to a regular-ed classroom by 4th grade (which seems to be the aim of the program), we should be building upon his interests and helping him blossom.

Rather than wringing our hands because his math ability is below grade level, I'd like to see someone say "wow, Henry shows a lot of interest in Paris/the Presidents/Big Cats. Let's have him do a research project on that." Of course, we still need to focus on the math, but not at a detriment to his other skills.

I know, I'm living in a dream world. Or a homeschool world :-)

-Thursday night during Thomas' gymnastics class, I struck up a conversation with the aide of an autistic girl. (I've noticed them for weeks. Why was it this week that I decided to approach them?) I asked the girl's age and told the aide about Henry. "I'm a special ed teacher," she said, "I teach at a school called [autism school I called that day]." I told her that I was hoping to still be on their waiting list. The young woman asked me my name and Henry's, and said that she would ask someone about us. She seemed like a neat young woman (I mean, she teaches all day and then works with the kids in the evenings too) and it just seemed, to quote Drama Mama, serendipitous.

-Someone from the autism school called me back Friday, and said that we are "second on the waiting list for our birth year", so it was a "realistic possibility" that we would be getting a call for an interview.

Without having visited the school (they won't do that until you're called for an interview), it's too soon to say if this is something I hope for. But it is nice to have options. And I feel like Bill and I are getting a better idea of what we want for our son, rather than just having the other experts tell us what we should want for him.

The current situation is good. I know that we are lucky. But it's not the best. And why not be hoping for the best?

extremely low

As I mentioned, Henry's IEP (Individual Education Plan) annual review meeting is scheduled for next week. In our district (state? county? I don't know who makes these rules) he is due for re-evaluation every three years. In yesterday's mail we received a draft copy of the MFE (MultiFactored Evaluation) team report for our review before the meeting.

The report did not hold many surprises. Henry tested "average" overall for his reading and writing abilities, "well below average" for his math abilities.

It appears that the school psychologist's classroom observation was on a 5-star day, as no behavioral problems were noted. Henry was observed while doing a spelling activity in the regular 2nd-grade class, and versions of the word "appropriate" were used several times in the summary. (It should be noted that Henry's aide was with him the entire time, as she always is).

One amusing bit of the report was the description of the psychologist's "assessment and interview" of Henry. It was generally quite positive-sounding:

His vocabulary was well developed, he could name all the animals in a book he brought, spoke about his favorite video, Aristocats, and about his interest in Paris, France and indicated that he would like to visit the Eiffel Tower and Notre Dame Cathedral. He was quite curious about pictures in my office and wanted to know about them. He was interested in football and follows the OSU and LSU, along with professional teams, and was knowledgeable about the teams and the results of the super bowl...

This description makes Henry sound like quite the little Renaissance man. Like you could chat with him all day long about wildlife, foreign cities, and sports. In reality, if you chatted with him all day, you would hear the same few facts about Paris and how he would like to go there. Yes, he can tell you who won the Super Bowl, because they discussed that in class and we discussed it at home. But I wouldn't say he follows professional football. Oh, well- I'd rather read a positive spin on my son than a negative one!

The report also noted he also said he had an ear infection for which he was on medication. This is completely untrue. I can only imagine that the psychologist asked Henry how he was feeling, or maybe noted that his nose was runny, asked him about it, and Henry responded that he had an ear infection!

The part of the report that really got me, though, was the summary of the Adaptive Behavior Assessment questionnaires. Henry's teacher and I each completed one. Our evaluations of Henry's behavior are in 2 comparative columns. In only 2 of the 9 categories were we in agreement.

In every other category Henry's teacher gave him a higher score than I did. My evaluation came out to "extremely low" in 7 of the 9 areas. Mrs. C's evaluation came out to "average" in 4 areas, "extremely low" in only 1.

My immediate thought upon seeing this was "what the hell is wrong with me? What kind of mother am I that I "rate" my son lower functioning than his teacher does? I should have more confidence in him."

But the more I thought back to the questions on this assessment, I came to a different realization. The questions (I'm sure many of you have seen them before) were like this:

My child cleans up after himself:
(choose one) never/almost never/sometimes/almost always/always

If Henry's experience and ability vary so greatly between home and school, it's because the expectation is different at school. In this example, he may very well clean up after himself almost always at school, and almost never at home. Because his teachers make him do it and I do not.

My son is 8.5 years old, and 90% of the time I dress him and bathe him. He has never answered the phone or prepared himself something to eat.

His little brother is more independent than he is. But his little brother WANTS to be- that's the difference. Thomas has long been interested in picking out his own clothes. Henry is not, so I pick them out for him.

I need to start making some changes- for Henry's own good. But it's not going to be easy. Not only will Henry fight me every step of the way, but many of our day-to-day activities are going to take twice as long. I may not be able to stick with it all the time, in every instance, but I need to start trying.

It looks like we'll be snowed in this weekend, so this is as good a time as any. I'll pick up a new stepstool and stock up on orange juice and milk (in case of spills) and maybe Henry will get his own breakfast tomorrow morning.

Wish me luck!

my week

I'm having a hard time with this new routine. With my new life as a JUROR. Please indulge a little play-by-play boo-hooing:

Monday was a Federal holiday, so we had no trial. So I went in to work and tried to get as much accomplished as I could. Then, Tuesday, Thomas's birthday, I had to go back to court. Just as a coincidence, L had an appointment that morning and had asked us weeks and weeks before if we could just drop the kids off at preschool that morning, and she would pick them up.

If I were attending my real job, that would be no problem- I'd get to work maybe 1/2 hour later than usual and would be able to pick up donut holes for Thomas to take to school for a birthday treat. BUT, in the current circumstance, I can't be 1/2 hour late for the trial and make all those people wait for ME. So I had to run to the store at 6:30 am, pick up the treat, take the boy to Bill's work, and Bill took him to preschool. It's not a huge hardship for anyone, but it was just frustrating. Partly I think I was just being sensitive because I wanted to be the one to drop off my birthday boy. I wanted to give him one extra birthday squeeze. You know how weird we moms can get on a birthday.

So I was pissy all day at court. Tuesday I tried to be a little more social with my fellow jurors, but by Thursday I was grumpy again. I have these anti-social tendencies at times, and I'm starting to chafe at being forced to hang out with these 14 other people (we have 12 jurors and 3 alternates) all day every day. All of them are nice people, but the longer we are together, the more our differences come out. The snowy and cold weather hasn't helped much either- we get over an hour for lunch, so when the weather is a little nicer, maybe I will go out and wander around downtown.

One day I will post some pictures of the courthouse and the downtown area- it's all very picturesque.

Wednesday court let out a little early. The judge asked if any of us would have a conflict with starting early the following morning. I nodded my head, and later explained to the court deputy that I would NEVER be able to start earlier than 9, as I have to put one child on the bus and take the other to his sitter each morning. She said that was no problem. But then the juror next to me started asking questions

"Can't their dad get them off in the morning?" No, he goes in to work at 5:30 am. Not to mention the fact that he already returns home to help out once a month when the school has a late start day.

"Can your son go to latchkey?" Now, the woman who asked this question is an aide in a special ed classroom and we have discussed that my son is autistic. What the hell is she thinking? I thought through all these possibilities a long time ago and discarded them. I am not going to change my life now because of jury duty.

I suppose people like this are trying to be helpful, but it's going to be a looong however-many-more-weeks sitting next to her, that's for sure.

The trial itself is so interesting- I can't wait to tell you about it. (If anyone is interested in the case, you can e-mail me and I will give you some suggestions of places to search for stories about the trial. But of course I can't discuss it with anyone. It's killing me!)

Friday we were scheduled to not have court (I suppose the judge needs some days to get other work done?) Because I had been so on-edge all week, I didn't plan to go into the office, but rather to get some things done at home. A "mental health day", if you will.

Except we had snow and freezing rain and ended up having a snow day. A mental health day is not as effective when all one's children are home with one.

It actually turned out fine- both boys played out in the snow with me for awhile, which is really big for Henry. He is usually quite averse to, well, doing anything outside, but especially in the cold and snow. We also ran a few errands and spent some of Thomas's birthday money.

I wanted to share a couple more pictures from his party. Here are all the kids getting warmed up:

And here is something awesome- Henry doing a "bear walk". You would not have seen this strength and coordination in this boy a year ago!

Henry did have some anxiety about the party. He spent the morning saying he didn't want to go to the party, he didn't like parties, etc. Then, once people started arriving, he got quite excited and kept repeating things like "it is Tommy's birthday! We are having a party! The party is starting!"

He played along and did gymnastics for maybe half an hour. Then he started saying he didn't want to, that he wanted to "help Tommy open his presents", and started getting really anxious about the present-opening. I think Bill missed a lot of the singing, cake, and presents, because he was doing stuff like this:
Then, once everyone was leaving, Henry started asking to "do more gymnastics". But our time was up.

I made a new friend this week, and I hope you'll check out her blog: Rooster Calls. Her son is 3 and she suspects he is on the autism spectrum, but doesn't have a diagnosis yet. She has been reading some blogs, looking for reassurance/guidance/support and stumbled across mine.

I've been thinking about what I convey, as the parent of an 8-year-old boy with autism, to some of the newbies in our community. I hope I don't seem to really know what I'm doing, because that's definitely not the case. But I can say that, with the birthday party being a good example, our family has learned how to cope with Henry's differences. And as he has grown he has become better able to express his needs and wants in a more appropriate, if still atypical, manner. If this party had happened when Henry were 3, or even 5, he probably would have screamed the entire time. We wouldn't have had a party. If it were someone else's party, we would have left early.

So we are all figuring it out together. It gets easier. And we're all happy to lend a hand to someone else, knowing that's one more hand to pull us up when we need it too.