coming into his own

Today is Henry's last day of 4th grade. This time of year, with the end of school and changing of seasons, seems to invite nostalgia, or at least reflection on what has gone before. Like my friend Eileen, I am thinking about how far my son has come.

My niece graduated from high school last week, and we spent the day at her party Saturday. The whole family was gathered in a shelter house in a beautiful wooded park. There was lots of food, lots of wild play by the other kids, there were dogs and babies and it was HOT.

Henry did fine.

He did ask frequently about when we were going to leave, but by now we are quite used to fending off his verbal assaults.

For the most part he hung out with a book or two and his ipod.

And at one point my sister-in-law pointed out that Henry had made friends with one of the dogs. One of the smaller, quieter, mellower dogs.

Henry was happy to be solitary, but he was able to talk with other party guests (better with adults than kids) when they approached him. There is usually one adult in such a situation that really gets to know Henry (in this case it was my SIL's sister), and that relationship developed without any intervention from Bill or me. She just liked Henry. And he liked her.

He ate some pie, but stopped at one piece. OK, two pieces.

I told him on the way home how proud I was of him for "hanging in there". But it wasn't until the next day, when I really thought about it, that I realized- at an event like this 2 or 3 years ago? We either would have cut our stay short, or Bill or I would have had to sit with Henry and read, take a walk, go somewhere in the car, otherwise distract him for the majority of the party.

A few years before that? We would have had to worry about him pinching or scratching the other kids for being too wild or too loud or getting in his space. I would have watched him like a hawk, afraid he would grab the whole pie plate and start digging out handfuls of cherries.

And we probably would have had to leave with a crying noodle of a boy, making his little brother leave before he was ready.

I could give other examples from the past week: our good family trip to the zoo, accompanying Henry's class to the conservatory, Tommy and Bill's last soccer practice/scrimmage/handing out of certificates that went on for longer than Henry would have liked...

He is learning how to handle life, and so are the rest of us. It's a nice feeling. It's nice to feel like we are all coming into our own comfortable place.

ironic

I have gotten together a few times this year with a group of moms. Some of them have children in Tommy's class. (They have seen Henry at the kids' soccer games, they know about him. But they don't know him.) Of course we spend a lot of time talking about our children.*

A couple of these women have "challenging" sons. I haven't seen the boys long enough/in enough situations to gauge what that means- they are always sweet when I see them, you know. But they are kids that are "a handful" for their parents and teachers.

So at some point in the conversation a finger usually gets pointed at me and someone says "her son is perfect."

It's said in that way that women have... "well you don't need to diet" or "you have the perfect husband." Statements that try to disguise themselves as compliments but are really sharp little darts of jealousy.

They are the kind of statements that one can't respond to. You can't just agree "I really don't need to diet, you're right. I'm just the right size." But you can't try to argue the point either "are you kidding? Do you know how much I weigh?" Because that just prolongs the awkward conversation.

So I just smile kind of sheepishly and shrug my shoulders, maybe nod and say "he is a good boy."

But you know what I want to say, don't you? There are many things.

Tommy is a good boy. My other son Henry is a good boy too. But there were many teachers who didn't think so. Many strangers on the street, in the store, and at sporting events who didn't think so.

I would imagine that parents of other kids in Henry's classes didn't think he was "perfect"- if they even knew who he was.

Not that I would ever know what they thought, because I never really interacted with my children's peers' parents until now.

Tommy is a good boy. I wonder if his behavior is due in any part to the fact that his parents have learned a lot of things the hard way? Maybe Henry and his sister before him have cleared that path. Maybe we have learned to praise more and criticize less? I hope so. Maybe we have finally learned to abandon expectations and just welcome whatever this child brings to us.

Tommy is a good boy. Maybe he was just born that way. With an easy and kind attitude, a quick intellect, and a handsome face. Maybe it's just the luck of the damn draw whether you get a "challenging" kid or a "perfect" one. He could have been raised by bears in a cave and still been "perfect".

Perhaps our society is user-friendly to only the most narrowly-defined typical human specimens. And lucky for Thomas he so far seems to fit those parameters.

And then there's the most childish potential response of all: Yes, my son is perfect. Don't I deserve that? Don't I deserve to have an easy child? I don't love him any more or any less than you love your "ornery/difficult/challenging" children.

But that last one is pure blasphemy. I would never say that.

(*A topic worthy of a separate post is how easy it all-of-a-sudden is to be a halfway social person- now that I'm not the too-young-stepmom-with-an-inferiority-complex or the mom-of-a-kid-with-a-disability-with-a-chip-on-her-shoulder.)

Henry got on the bus this morning without his usual armload of books. That happened at least once last week too, and after the bus had driven away I wondered if it would pose a problem. Henry has a long ride to school, and would trouble ensue without all his books and papers? They provide him with both entertainment AND security. Why would he go anywhere without them?

Today I asked the bus driver "what does he do when he doesn't bring a bunch of stuff with him? Just hang out?" She shrugged and nodded. This woman has been driving Henry for years, and would definitely tell me if there was any trouble on the bus. "Hmmm" I said, "I guess he's just growing up."

Thomas wanted to know what the bus driver and I had been talking about. When I explained, he responded with a question: "Will Henry still have autism when he gets older?"

Gah. He didn't know what a loaded question he was asking. I hemmed and hawed, started and stopped a few sentences. I mean, the answer is yes. Henry will always have autism. But what Tommy was getting at is will Henry always be the same? And that question is not so easy to answer.

With the average 10-year-old, you can surmise pretty accurately that his interests will not remain the same throughout his life. With Henry, who knows? He may remain fascinated with Disney into his adulthood. Then again, his interest in puzzles has waned a bit. He went to school today without any books, movies, or papers in his hands. So he does change. On his own schedule and his own terms. I think all of us in the autism community, though our kids are wildly different, can say they have that in common.

The funny thing about talking to Tommy about this is, while he knows his brother almost better than anyone, he doesn't remember Henry at his most difficult. So it was odd for me this morning, to try to describe to Tommy how Henry used to be when he was 3-4-5 years old. Odd because I don't remember it that well either. Like I blocked it from memory. And also odd because it feels disloyal even now to talk about Henry like that. He used to scream a lot. All the time. We couldn't take him most places. He would scratch and pinch his preschool teachers. He would get mad when they tried to get him to work on something. Sometimes he would knock over his chair.

And now he sings and dances and brings home As and Bs from school. Now he's in the same gymnastics class as you. Now he wakes in the middle of the night worrying that he forgot to do his writing homework.

Yes Henry will always have autism. But that doesn't dictate who he will be.

play, pie

Let's play "villains made happy". You be Jafar.

(Sigh.) OK. Hello, welcome to Agrabah.

I'm here to make you happy Jafar.

Oh, I'll be quite happy, thank you, as soon as I can get rid of that street rat Aladdin.

(Swings a magic wand) You're happy!

What's this? I'm smiling. I don't feel like taking over the kingdom anymore. What is this feeling?

You're happy Jafar. (Stage whisper: Now tell Iago that I made you happy.)

Iago! I feel happy now- I don't want to be mean anymore!

Now you're Cruella DeVil...

__________

And so on. This is playing, to a 10-year-old, Disney-loving, PDD-NOS having, kid. We cover all the villains. Believe me- all of them. I'm proud of myself when I crack a good joke as Hades or Captain Hook, and Henry has to struggle to stay in character.

He is supposed to be Mickey Mouse in this scenario, and I imagine he's seen the plot in an episode of House of Mouse or something? Perhaps he came up with it on his own, but it's more likely that he's adapting a familiar script.

Whatever, it's somewhat imaginary, and carries a good-triumphs-over-evil message, so we'll keep playing.

______________________________________________

We've had a busy and wonderful fall, with lots of family visits and a little bit of travel. Both kids have enjoyed themselves and held up pretty well, but we could see things starting to wear on Henry by the last couple weeks of November.

The weekend before Thanksgiving my brother arrived from Chicago for a visit, and the first thing Henry said to him was "I wish you would never leave." Right away I thought of our friend Charlie who, before something fun even begins, often starts to worry about its end. Henry did a lot of arguing and back-talking and worrying that weekend, and eventually we hypothesized that he was excited/anxious about Thanksgiving.

It really pulls at my heart that he looks so forward to something until he doesn't know what to do with all that excited energy, and it turns against him as anxiety. We are trying to learn better ways to talk about this, and help him understand it.

All weekend Henry kept repeating "I will not make a cherry pie", and we were like "fine, whatever, no one's going to force you to make a cherry pie." Then, the day before Thanksgiving, I helped his class make pumpkin pancakes. (So cool to see the kids all working together in this inclusion classroom). His teachers were all "Henry keeps telling us about the pie he's going to make!" Who can figure that kid out?

He never did help make a cherry pie- Grandma made it all by herself- but he ate the entire thing. Not all in one sitting, but within 24 hours. It was gone. Bill and I were reflecting on the meal- that Henry stayed at the table longer than he ever has before. Maybe we've finally got him trained. Then we remembered the pie and decided that maybe he's the one who has trained us.

getting it right once in awhile

Bill and I have been talking lately, about how as parents we tend to take on the blame for our children's mistakes, but not the credit for our children's successes.

If our child makes a "bad" (dangerous, unhealthy, unkind) choice, we think "I didn't teach him well enough". If our child makes a "good" choice, we think "that's as it should be. I guess we didn't screw him up too badly yet." Or "this kid was born with a good head on his shoulders."

What do you think? Nature vs. nurture? Is it realistic to believe in a little of both? Or does the mix vary, child to child?

All this is to say that we had parent teacher conferences for both boys last week, and both went well. Thomas is off to a good start in kindergarten, and I am quick to deflect all credit for this to his caregiver, L, and his 2 years of preschool. Henry, while tracked on a different measuring stick than most in his age group, is happy, learning, reaching out to peers (baby steps) and making progress on his goals. Good news all the way around.

Sunday the four of us went to church for the first time in... well, longer than I can remember. 1 1/2 years? We had drifted away from our previous church, and selecting a new church was a challenge that we didn't face for quite awhile.

The way things shook out this fall, Thomas is attending an after-kindergarten program at a church near our home. He started asking to say a prayer before dinner and read stories in his children's bible and we thought maybe it's time to give this some attention.

Henry has always enjoyed church, particularly "getting a blessing on his head". So he was reasonably excited about going on Sunday. Halfway through the service he looked at me and said "I love this church!" He read along with the service and asked "can I bring this home?" about the program. His eyes lit up when I told him yes. When we went up for communion he asked for a blessing from the pastor with the wafers, the woman distributing the wine, and the young man collecting the empty wine cups! I don't know that they were each qualified to bestow a blessing, but I doubt that God minds.

Do you ever feel like you're just wading through thick mud, in slow motion, when it comes to getting things right for your child? I feel like that a lot. So Sunday felt good. That first step back to church took a long time, but I'm glad we finally got there.

I'm tired of getting on here and making an excuse for why I haven't written. I just haven't. I don't know about you, but for me blogging is/was a compulsion. And lately it's not. I'm sure it will be again one day.

That's not to say I don't have things I need to get off my chest. They're just not coming out as freely anymore. Or they're things that aren't as pertinent to this group. Or they're just not quiiiite ready to come off my chest- they want to weigh down my breathing for a little bit longer.

But I'm glad to know that you're still out there.

We are doing well- enjoying the busy fall. I don't think I've mentioned that Henry is in an inclusion class this year (as opposed to the all-ASD "remediation" class he was in last year). It is a challenge. Not socially, as far as I can tell, but the academic expectations they have for him are impressive. His homework load has increased, and last week he took his first real science test, with a real percentage grade. Although he knew the material (I know this because he informed me about things they had learned each day), he only scored 68%. Most of the questions he missed were true/false, and I don't believe he completely grasped that concept. So that is something for us all to work on.

His newest perseveration, or I should say the newest embodiment of an old familiar perseveration, is youtube. Youtube is a mixed blessing for this parent of an ASD child. He can find just about any damn thing he's looking for out there: the scene from Sleeping Beauty where Prince Phillip slays Malificent/The Dragon; morphing scenes from every incarnation of Power Rangers; the opening theme to Disney's House of Mouse. And he can watch just those scenes, over and over and over and over. But does this satisfy an urge, or just feed into an obsession? And of course there's the worry that he'll click over to something inappropriate by accident.

Tommy decided (unprompted) to sort through toys a couple weeks ago. We have gathered bags and bags of stuff to get rid of. It's tough to give up some of these toys- but maybe a freeing exercise as well. There are so many items that we got in the hope that Henry would play with them. Of course, he never really played with any toys, and now that he's 10 years old, the time has passed for him to play with them.

There's the huge farm set that fills a whole trash bag. I had it setting out in the hallway this weekend when Henry happened upon it and sat down. He took out all the animals and sorted them into groups- just like he's always done. That's the closest he's ever come to playing with this set. The whole thing makes me feel a little sad- how many times I tried to show him how to play with something, or got it out hoping he'd play with it, and all he knew how to do/all he cared to do was put the pigs and piglets in a little pile, the cattle in a pile, the horses in a pile, and he was done.

It makes me sad, but yet my typical son never really played with this toy either. Some toys just don't appeal to some kids- no big deal. I don't need to make it one.

Right?
Right.

So we've been kindergarten parents for not quite 2 weeks now. The boys and I have a routine in the morning: we hustle out the door around 8, get to Henry's bus stop by 8:10, drive over to Tommy's school, cross the street with the crossing guards, and wait outside with the milling elementary school kids for the bell to ring at 8:25.

We all swarm inside, Tommy holding my hand, and head first to the bathroom. Just one last effort to help him get through the day without any interruptions or accidents, if you know what I mean.

Bill is coaching Tommy's soccer team, which is made up of other kindergarteners. So we're learning people's names, learning which parents go with which kids, maybe forming some initial impressions of which parents we like and which ones we don't, which kids we like and which ones we don't. (Ha ha ha- that's just a joke- we like everyone, of course.)

As I was driving to work today (all alone in the car after all these years of having a buddy or two in the back seat, sniff sniff), I realized that I was really geekily excited about getting to know other parents and making friends. I stepped back and wondered why am I being such a dork about this?

But then I answered my own question: this is the first time I've felt really comfortable as a parent- the first time I've felt in my element. I mean, now I am also in my element with special needs education. but when Henry was in kindergarten? We were shuttled around from placement to placement and I just felt like I was wrapping my arms around my kid and rolling with the tide. A far cry from holding his hand and leading him up the stairs and into the potty.

And even before that, Kate-the first kid I parented- didn't live with us in kindergarten. She did for first grade, but at that time I was the 26-year-old-girlfriend-of-a-first-grader's-parent. I performed a lot of parental duties, but I didn't feel eligible to call myself a parent, to talk to the other parents about parental stuff.

It was all in my head, of course, all this fitting in or not fitting in. But nevertheless it felt real. And now it feels real to look around and think I finally do fit in a little bit. 13 years after attending my first meet-the-teacher night.

feeling overwarmed

It's been a long, full week. I worried at times that I had overscheduled Henry. Well, all of us, but especially Henry.

Of course I was planning things that he enjoys. But even things that he enjoys seem to fill him with anxiety. We think that any and every strong emotion gives him the same uneasy feeling, and he doesn't seem to know what to do with that feeling.

So what happens is that we enter the zoo, and he is immediately overwhelmed by the excitement of it all. He begins talking, non-stop. Sometimes in a whining tone, sometimes in an angry tone. A steady stream of worry-talk:

I will not see any animals. I will just go back home. There are no sharks. There are no wolves. Just home. (Hey, Henry, look at these bats!) NO BATS! You are the bats! Let's just go back to the car. Let's just go back to the parking lot. I will not! see! any! animals! (with a push to my belly upon each word)...

While the talking is going on, he is also likely to grab anyone who comes near- either to push or pinch. So Bill or I are constantly trying to hold on to him, both to keep him from hurting anyone, and in an effort to comfort him with some hugs and squeezes. I have no idea, really, if this helps or not. But it's what we do. We try to tell him that we understand that he's feeling excited, anxious, overwhelmed. (I introduced this word this week and he latched on to it, but kept saying that he felt "over-warmed".)

And just when I'm ready to bag it and say we'll go wait in the car, he focuses on something he wants to look at, mercifully shuts up, and seems to enjoy himself. He does have periods of enjoyment, or I wouldn't do stuff like this with him. If you asked him about any of our travels, I'm sure he'd tell you that he had "such a great time" and wants to go back.

It's not fun for the people we're with and I feel like it takes me away from enjoying things with Tommy. I have to be focused, at least 80% of the time, on Henry. And don't you think it must be taxing to Henry, to flip a switch from anguished to euphoric and back again, multiple times in one day?

It's exhausting and puzzling. But we keep on doing it. Keep putting our heads down and plunging ahead. But sometimes I wonder what he's really thinking? And whether this stress is worth it to him?

food explorers

I'm beginning a 2-week "staycation" while the boys' caregiver is on her vacation. There's a lot I hope to do in these 2 weeks, including activity and non-activity with my kids. I also hope to get back to blogging (a common refrain among bloggers, it seems.)

I have a lot of BIG IDEAS floating around in my head that I want to unload, but today I think I'll start with something more manageable: a report on Henry's "food explorers" class.

Any of you with children with major feeding issues will already know all of this, and more. But for families like ours, with smaller (but still frustrating) food issues, maybe this will be helpful.

Henry eats a (comparatively) wide variety of foods, but is very resistant to trying anything new, and has an extreme reaction (gagging) when forced to try most new things and particularly vegetables. He also prefers to eat with his fingers and pick food apart, peel it, squash it, etc.

The food explorers meet twice a week. The kids are presented with a variety of foods to discuss that day. The foods are passed around the table and each child must serve him/herself. Thus they are forced to at least interact enough with the food to touch it and place it on their plates. For some children this is quite a feat in itself. I should note that the foods aren't anything exotic. Past sessions have included string cheese (just touching it to pull it out of the bag made Henry gag), turkey slices, orange bell pepper strips, vanilla yogurt, graham cracker sticks...

They discuss the properties of the foods, and last week they made a craft using the foods. The literature the therapists have been sending home each week really encourages children to play with their food, which would not have been my instinct.

There is some kind of reward system for interacting with the food. But no one is forced to eat anything. Overall it has been a positive experience for Henry, maybe because he is willing to try many of the foods- he gets a lot of positive feedback. But the idea is to focus on the positive, of course, no matter the level of interaction.

Let me give you an example of how this has translated into our home life: last night we served Henry hot dogs from the grill, blueberries, and barbeque potato chips. Seemingly three of his favorites. But the chips were a different brand, and were ridged. Totally and completely different from the barbeque chips that Henry likes. I was in the unusual parental position of asking Henry to eat one of his potato chips before he could have more blueberries.

"I'll sniff it" he offered.

"Um, OK" I agreed. Then I negotiated, "how about trying a lick of it?"

So he sportingly picked up the chip and licked it. I hoped that the taste might encourage him to actually eat the rest. It didn't, but I let the subject drop.

It will seem a little goofy to anyone else dining with us, but this system feels right to me. I hate only feeding Henry his favorite foods. But I hate forcing him to gag down a bite of broccoli even more. I like the idea of having him serve himself an un-preferred food, keep it on his plate, and maybe sniff or even lick it. It seems like a compromise we can live with and maybe it will condition him to eventually try something new.

end of school

I'm at home with "sick" (but not really sick) Tommy today, and thought I'd try to catch the blog up on the past month or so.

Although Henry is still in school this week- making up some calamity days- his class had their end-of-the-year events last week. Thursday they had an "awards ceremony" and then early dismissal. The awards ceremony was cute- each child came to the front of the class to receive some kind of candy and a certificate. The awards were not academic, but based on the child's personality. For example, one boy was given a box of Whoppers and his award was for the "best storyteller". I can only assume that he tells some tall and lengthy tales, as some ASD kids tend to do.

After the award was given, classmates were encouraged to say something nice about their friend. I was so moved- even the children that I've observed to be very non-communicative stood up in front of the class and called on classmates by name. Those kids are troopers- every one of them! The same couple girls were always the ones to say something- and it usually was a take-off on what the teachers had said: in this example "you always tell really good stories".

Henry didn't want to say much about his classmates, and when I did prompt him to, you could tell that he was scripting. For example, one boy is on Henry's baseball team. I whispered in his ear that he could say something about that. Henry raised his hand and, when called on, stood up and said "you were once on my baseball team. The Florida Marlins." in an announcer-type voice. He didn't get that he was supposed to say something nice, like "you always do a good job".

When school started in the fall , Henry was quite fixated on Prince Caspian. That's what he was for Halloween, and I think the teachers didn't realize it was just one in a string of movie obsessions. So all year they have all talked a lot about Prince Caspian, even though Henry doesn't show much interest at home anymore.

Henry's award was for "best hugger" and he was given a bag of Hershey's hugs. "I don't want this award" he proclaimed. "I want the Prince Caspian award". I was a little embarassed, but the teacher didn't miss a beat. She picked up a pen and wrote /Prince Caspian Award on the certificate. With any other, typical, child, I would think this was giving in/reinforcing bratty behavior. But as we parents (and teachers) of special ed kids know, we have to pick our battles.

After we left school that day, I re-learned a lesson. I thought I would suprise Henry with a trip to the zoo- just me and him. I didn't bring it up at home because I didn't want Tommy to hear and be jealous. Well, of course my little predictable-structure-loving man didn't like my idea. He wanted nothing to do with the zoo (even though he'd been asking to go for weeks). He wanted to go to the library. Of course. I persevered and drove out to the zoo, only to find that I didn't have my membership card. (Doh!) So what ended up happening? That's right, Henry got his way and we went to the library. At least we stopped at a park for a picnic lunch first.

Another lesson re-learned this week: make Henry do things, even when he protests. We joined the community center pool this weekend. Bill and Tommy went ahead to swim and I started laying the groundwork with Henry. He was watching the same scene over and over from Sleeping Beauty- the big finale when the Prince is let out of the dungeon and fights the dragon. re-playing it over and over. I could have just let him keep doing that while I cleaned the house or read a book.

I mentioned getting ready for the pool. He said he didn't want to go, but then turned the dvd off after one more playing of the scene. He sat on the couch, repeating that he didn't want to go. I threw his swim trunks and shirt down the stairs and by the time I got down there he had put them on. His words say "no" but his actions say "yes".

Would you believe that once he got in the pool (he was timid at first) he didn't want to get out for HOURS? I actually heard him saying "watch this mom" "watch this mom" over and over. It was awesome! But also humbling. How many days do I let him sit and perseverate on something, all by himself, rather than pushing him to do something interactive with us? I must remember not to get lazy.

One other development that I want to mention- Henry's speech and occupational therapists are starting a group called "Food Explorers" for kids with food issues. The idea is not necessarily to get them to eat anything new yet, but just get accustomed to touching the food, talking about it, in sort of a scientific way- talking about the properties of different foods, etc. The group will meet a couple times a week during the 5 or 6 weeks of summer school. I will let you know if anything exciting comes of it.

hoarding bliss

This has been one of my favorite books since I was a child. One of the ones that always stayed with me. It appeals to my urge to capture things, feelings, moments and hold on to them. I might need them later, in the dark of winter.
If you're not familiar with the story, Frederick is a field mouse who, while his brothers are gathering food for the coming winter, sits, gathering his own supplies of warmth and color.

Lately I find myself putting sickeningly sweet status updates on facebook, like "my jog this morning was bliss" or "this is the best day ever because m&ms were on sale at the grocery store". So for those of you who may be wondering if I'm on some new happy medication or have joined a cult, I want to explain that I'm really just Frederick-ing.
I am hanging on really tightly to good things when they happen, because they do happen, but sometimes they get buried in the bad. Springtime is an easy time of year for this, because everywhere you look there's a new beautiful thing growing, and even if it's a cloudy day the sun was out yesterday and should be out again tomorrow.

Henry is doing math homework without arguing. I'm registering Thomas for kindergarten and flying through the speech/language questionnaire without blinking. I know this child does not have speech/language difficulties because I also know a child who does have them.

I'm acknowledging this stuff- giving it the space and the respect it deserves. My life is far from perfect and I'll probably have a really crappy day tomorrow just as payback for all this gushing. But if I don't wallow in the good then I'm wallowing in the bad, and one lifts me up while the other drags me down.

Remember the damage our house sustained back in September? It was eventually repaired. Then more high winds blew through in February, and ripped even more siding off. It didn't all come off, though- some of it remained, half-attached, and banged against the wall outside Henry's bed. For days and nights on end.

As we negotiated with our insurance, we found a company that we wanted to do the work for us. Although nothing had been signed and no money had exchanged hands, these folks came out the very next day and tacked down the loose siding. Every night since then I have been thankful for the quiet in the wind. Something I took quite for granted until the storms came around.

I couldn't ask for a better metaphor. These storms blow through, they f*** things up, and we have a big mess to fix and a big pain-in-the-ass noise keeping us awake at night. But afterward we have a new appreciation for the quiet, the beautiful, the easy, and the hands that help quiet the noise.

Happy Easter and happy spring.

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...

and then he was 5

Flashback: Feb. 21, 2004: It was time to take Thomas home from the hospital. Bill went to pull the car around and the hospital aide arrived to wheel us downstairs in a wheelchair. (Isn't it funny that they escort you out in a wheelchair? It's like one last act of pampering before you are dumped into the cold water of mothering, where you are the caregiver, not the cared-for.) I'm sorry that I can't remember the woman's face or ethnicity; I only remember that her English was a bit broken. As she wheeled me down the hall, she observed "this not your first baby."
It wasn't a question- it was an observation. She could tell by the casual way I held him slung in one arm (and held a flower arrangement in the other) that I had done this before. What she couldn't know was how much different the first baby had been- that I left the hospital without him. I'm not sure why that woman's comment has stuck in my head all these years. I guess it was a glimpse into how I was viewed by others; a mother. A mother who knows what the hell she's doing. Some days I feel like that's accurate, other days- not so much.
No, he wasn't my first baby. But he was my last. And now he's 5.

This month the preschool teachers held conferences to let us know how our children stack up against the kindergarten readiness checklist. Tommy is ready. He knows his letters and numbers and is starting to read!!! I won't lie- it was good to hear them say that he could exhibit skills that many of his classmates can't yet. It felt even better to hear that he is always interested in learning, always participating. What more can I want for my son? Only that he keeps his inquiring mind fresh, and doesn't get bored or stifled as the school years go on.

Preschool has felt different this year. Last year, at the year-end picnic, he still didn't know any of his classmates' names. This year he has really matured a lot and made friends in his class. We invited some of them to his party (at the gymnastics place again), along with old and new friends from L's house.

Yesterday we visited the doctor (and left with an antibiotic prescription for his sinus infection). Tommy told the doctor he is "excited about being 5". He doesn't care about the 3 shots in store at next week's 5-year checkup, except to say "maybe if I'm good they'll give me 3 suckers".

He's a good boy with a good attitude. He's kind and silly and smart and affectionate. He loves Magic School Bus books, he loves to build with legos, he loves to ask questions. He also loves to watch Spongebob and eat Life cereal for every meal. He is a light in my life every day and I am so thankful for him.

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:

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 :-)