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:

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.

double standard

This photo is currently my computer desktop background- it's from our visit to the zoo last weekend. It says a lot about my sons: Thomas is wearing a Batman pajama shirt backwards on purpose and Henry is holding his Big Cats Zoobook.

My boss commented today on the picture and asked about Henry's magazine. As usual, I launched into a longer-than-necessary explanation.

You see, Big Cats is one of Henry's very favorite Zoobooks. Because he carries his very favorite things with him to school, the gym, the grocery store, L's house... sometimes the very favorite things get lost. Or they get ripped.

In the past few months, something happened to Big Cats. I can't be sure what it was, and it doesn't really matter. But Henry would ask for it and I would promise to look a couple places for it; in the cars, in the basement where I keep things that need to be repaired, I would ask L about it. When we went to the zoo he would look for it in the gift shop, and they would never have any copies.

As so often happens, I put Henry off and off and off until I finally focused my attention on the situation and thought ok, the Big Cats book is gone, let's figure out how to get a new one. So I ordered a new copy from the Zoobooks website. It arrived around Henry's birthday.

Then, last Sunday, as we browsed in the gift shop, Henry found what he wanted to get: Big Cats. (Sure, now they have it in stock!)
But we already have that one Henry. At home. I know because I ordered it special for you. Why don't you pick out a different Zoobook that we don't already have?
We do not have it at home!

Yes, we do. Remember, it came in the mail? I know we already have this one at home.
It did not come in the mail! We do not have it at home!
You can tell by the picture how this argument was resolved. We bought another copy of Big Cats. And it's not a huge defeat in the bigger scheme of things, I know. It cost like $3, made him really happy, and now we'll have a spare for the next time we lose one copy.

But the part that bothers me--and the part that my boss couldn't really understand, although he is well-intentioned--is... if it were Thomas wanting a duplicate of something he already has, I would not give in so easily. Of course, the flip-side of that is that Thomas probably wouldn't ask for something that he already has. He would decide that it made sense to pick out something different.

My boss was asking "what would happen if you just told him no and refused to get it for him?" Well, I would probably have to drag him out of the gift shop crying, and then we'd have to talk all day about the Big Cats magazine. And what it really comes down to is--and this goes along with what I wrote a couple posts back about spoiling my kids--I don't want to tell him no. I get how important it is to him to have his papers or his books or his magazines. I get how comfortable those things make him feel. And I'm happy to help my child feel comfortable. But I wonder sometimes if I'm doing the right thing.

No, strike that. I don't wonder if I'm doing the right thing. But I wonder why the "right thing" for one child can be different from the "right thing" for another child.

My mom told me recently about how she made my one brother take piano lessons. And not the other brother. Basically she knew that my middle brother would have flat-out refused to cooperate. The younger brother, he didn't like it, but he could be persuaded. So he took piano lessons.

Time Magazine's cover story this week is about birth order- the stereotypes and truths associated with being the first-born, baby, or somewhere in the middle. Although I don't feel that many of the issues apply to our family, it is still fascinating food for thought, and is making me examine my choices- will Tommy have it easier or harder because of his older brother and sister? Will I give in to him more or less? Will I celebrate each new skill he learns, or will it be old hat for this mom of three?

Maybe the thing I have learned from the other two that Thomas will benefit from is: to suggest the thing that seems logical (don't buy a magazine that you already have), but to be open to the idea that we don't always have to be logical.

See? New month, new attitude.

A couple Saturdays ago I tried to jot down notes as Tommy and I were playing. His imagination just enchants me- I think I am especially amazed by it because Henry's never been much into imagining things. So the stuff Thomas comes up with just always surprises me. At the time I think I will remember it to tell someone about, but then it flits right out of my head again.

This day I think he was Fastman, and rode in a thundercar. Before leaving to fight the bad guys though, he had to stop to put on his boy makeup and put in his boy contacts. (Can you tell that he follows me around in the mornings?)

I was instructed to ride next to him in the pinkcar, and he used a Wendy's coupon as a swipecard to start our vehicles.

We soon moved outside to easier battle bad guys by running around in circles around the front yard and jumping over things that daddy had recently planted in the yard. They were actually powerful plants that give you certain powers if you touch them.

Later that day we went shopping and, while he wasn't able to decide on a Halloween costume, (that's going to be a really tough one this year. We've already returned one Spiderman costume after the love was gone) he did get one of those little-kid backpacks that also have a pull-handle and wheels. He modeled that thing all over the store: see? You can put it on your back like this, and see? you can pull it on wheels like this. Wait mommy, I want to put my new jammies in my new backpack. Ooooh mommy, look at the Halloween decorations...

Here he has gathered all his Pooh buddies to watch a Winnie the Pooh video. (This is the couch in our basement- much as I would secretly like to, I have not hung a Harry Potter poster up on the main floor of our house.) Also included in the group are the ghost that makes spooky sounds (also found shopping that day) and a garage-sale St. Bernard dog. The dog makes a great superhero because he can carry all kinds of imaginary tools/weapons in the barrel around his neck.

If you're getting the impression that I spoil this kid- buying him unnecessary Halloween stuffed ghosts and backpacks-on-wheels, well, you're right. I do spoil him. I have realized that recently, as every day when I pick him up he asks "did you get me anything today?" It's pretty wrong that at least once a week I say "yes, I did! Some new socks, a Batman flashlight, a Winnie the Pooh video..."

I think I got into this habit with Henry, because his interests are so specific, and he is so hard to please, yet easy to please. I pick up Disney books whenever I find them at the consignment shop, or randomly order Star Wars coloring books for him on the internet to replace the ones that he can't find anymore and can't stop asking about.

But Henry has never seemed "spoiled" by it- he sometimes will ask if I got him something at the store, but I guess the difference is that he doesn't cry when I tell him I didn't get him anything.

So, I am trying to be more conscious of this and if I do pick something up for either boy, think about saving it for a later occasion.

Last night was just such an occasion- Henry's aunt had pre-ordered the Jungle Book DVD for him for his birthday. Today, October 2, is the release date, and of course we have it marked on our calendar. Well, it turns out that when you pre-order from Disney, you receive the DVD even before it is in the stores!!! Who knew? So it arrived yesterday, and Henry was over the moon about it!

It seemed like a good time to pull out the Ninja Turtle pajamas that I had picked up for Tommy last week, so he had something to be excited about also. Last night was a good night at our house!

And finally, relevant to none of this, here is a picture of the delicious salad I made today at Wild Oats:

I thought it looked so colorful and fresh that I would take a photo- I know, I'm weird. This salad cost enough money, I am hoping to make it last a couple days, and maybe I'll get this photo framed :-)

having an autistic brother means giving up your french fries

This wasn't a catastrophe. It would probably not merit a mention if you asked either of my sons to summarize their day today. But it's an example of the additional dilemmas autism brings to the life of our family- the things I worry about as a mother.

A friend's son had a baseball game tonight at the fields near our office. I picked up both boys from L's house, drove through Burger King (Fantastic Four toys in their happy meals) and met my friend at the game. Tommy and Henry sat on the bleachers and I distributed the food. Henry ate about half his french fries and then asked for Tommy's. Tommy was not eating any of his food, but when I asked if he wanted to share his fries with his brother, he shook his head "no".

I told Henry that he should finish his own fries, eat some of his chicken nuggets, and then we'd see if Tommy had any fries left that he wanted to share. "No! I want to eat HIS fries!" Henry started trying to push Tommy and reach for his food.

I moved Henry to the bleacher below me (hoping out of sight, out of mind) and tried to keep watching the game. Henry continued to argue about wanting more fries, and Tommy kept insisting that he didn't want to give any up. I threatened Henry that he would lose computer privileges if he kept acting this way, and he SCREAMED. Right when my friend's son (R) was starting to pitch. R walked his first batter. I'm sure that Henry's screaming didn't have much, if anything, to do with it, but nevertheless I felt very uncomfortable.

I told Tommy "I'm going to give Henry your fries (Tommy still wasn't eating anything) and we'll stop on the way home and get you some more. Maybe we can even get some ice cream on the way home too..." I was losing all my marbles. This is not the mom I want to be.

I want to tell my kid something (you can't have your brother's french fries) and stick with it. I want to be consistent. I don't want to punish the neurotypical kid for being normal and reward the autistic kid for behaving inappropriately. I don't want to do that, but then I do. Because I want to watch 1/2 an hour of a 9-year-old kid's baseball game. Why is that such an impossible dream?

As it was, Henry ate all the second helping of french fries, none of his chicken nuggets, and said he was ready to go home. So we left.

I did get to see R get up to bat and pitch an inning, so I didn't mind leaving. But this was a disappointing reminder that we have not come so far after all. We are not quite like the rest of the families.

Tonight I told Henry I wanted to talk about what had happened. I told him that it's not ok to eat his brother's food- they each have their own food and Tommy should not have to give his up. I also told him that it's not ok to scream and yell like that when he doesn't get his way. I pointed out that it might bother the kids who are trying to play baseball. Henry started crying, and said "I don't like baseball." He kept repeating it over and over.

So I tried to teach a little lesson and all I succeeded in doing was turning it around in his mind so that now Henry doesn't like baseball.

I made sure to thank Thomas more than once for giving up his french fries. I told him it was a very nice and very grownup thing to do. He was kind of like "whatever, mommy". But I worry that this will become his destiny- he'll always have to make sacrifices to make his brother happy, and will come to resent it.
I'm not sure what I can do except keep being honest with both of them. And maybe buy a larger size fry next time.

photos, general update, and siblings revisited

The photo shoot at Target went great on Friday!! I intended to only get a photo of the three kids together and then one or two of Tommy to commemorate his 3rd birthday. My logic was that Kate and Henry get school pictures taken, so I didn't need to get more taken.

Of course I was wrong, because these were much better than what gets snapped at school!

I had "warned" the photographer ahead of time about Henry: we've been burned before by photographers who wanted to do lots of different poses and props. Henry will usually only tolerate one or two snaps, and you'd better hope that you got something usable!

He is getting older, however, and this photographer was more calm than some we've seen, so she was able to get quite a few photos.

So finally I can check something off my to-do list that's been there since Christmastime!

_____________________

The rest of our spring break weekend was nice. The whole family (yes, even the teenager) enjoyed a picnic at the park on Sunday.

Both boys have been doing a super job of helping with the new chores (taking out the trash, putting away clothes, cleaning up). I kind of feel like a dunce to not have done this sooner, but oh well. I am learning to work through (i.e. ignore) Henry's protests and am finding that he'll do all sorts of things if I just make him do them (through persistence, not physical force)!

He has always argued about everything, but now has added SHOUTING to his repertoire. It sometimes makes us smirk because it is quite an over-reaction. If I were more technologically savvy I would record him so you could hear it... At any rate, we feel that while I DO NOT NEED TO TAKE A BATH (along with a foot-stomp for emphasis) is not the response we would like him to give us, it is a developmentally appropriate way to try to assert his independence and is ok from that standpoint. And despite his shouts, he usually proceeds to take off his clothes for the bath anyway.

The other night I found the bathroom stool in Henry's closet. He was trying to reach something on a high shelf (some Disney magazines). I was astounded. This is the first time he's ever shown initiative like that. I guess he just needs the proper motivation (thank you Walt Disney.)

_____________________

I left a comment over at Christine's site the other day that I wanted to expand upon a little. It said, in part:

Sometimes I suggest to Tommy that he could play with Henry, and Tommy says "well, Henry doesn't really like to play." And that breaks my heart- for both of them.

But one day last week Henry went along to the sitter with Tommy. When I picked them up, Tommy said (unprompted) "Henry was a little bit nervous today." And this whole new avenue opened up in front of me- one where the little brother could be a voice and a guardian for the big brother. Very comforting.

It is intriguing to me to watch my sons' relationship develop. I have worried about it in the past, but am starting to feel more comfortable. When Tommy was still a baby and Henry was newly diagnosed as autistic, I worried that they would not have much of a relationship at all. But that was silly.
While neither boy is the other's ideal playmate, and they may never play together the way I remember my brothers doing, I do feel that they are forging a lifelong relationship.

Although they were born nearly 4.5 years apart, anyone who didn't know better would assume that Henry and Thomas are quite closer in age. His small size and developmental delays make Henry seem a few years younger than he is.

Some of his interests (Power Rangers, superheroes, Playhouse Disney tv programs, Disney movies) that are a little immature for most 7-year-olds work nicely with Tommy's interests in the same subjects. And, maybe because they've always shared a room, they are both good about sharing toys, books, etc. Well, they're not always good about sharing, but don't seem to have a concept of this is mine- not yours and I hope it stays that way for awhile.

I mentioned when writing about Henry's IEP that both boys are working on zipping zippers. When we visited the zoo and the conservatory recently, they both looked for stone walls, railroad ties, and concrete blocks to walk along, practicing their new balancing skills.

One new development that has surprised me a little is this: Thomas has taken to reprimanding his big brother. For example, he'll say "Henry, you're getting all messy from picking apart your doughnut. Watch me, I take bites." Again, this makes Bill and I smirk, but we quickly tell Tommy "we'll worry about Henry. It's not your job to tell him what to do." I knew the day would come when Tommy would realize he was "more able" than Henry, but I guess I didn't expect it to come at age 3!

I used to worry about how I would tell Tommy about Henry's autism; how I would explain a disability without making Henry seem inferior. But it seems like Thomas is figuring it out for himself. I hope he will grow to be an advocate for and ally to his brother. What a blessing.

Henry speak

(Brushing a sheep at the petting zoo. I don't think I told you all that I lost Henry at the zoo last time! As I tried to gather the younger boy to move on to the next exhibit, Henry walked ahead of us and just kept walking. In a weird way I was glad it happened- I think for 6 1/2 years Henry has never left my side- never ventured anywhere on his own. So I see this as a developmental step, even though it scared the *&$! out of me.)

As Henry's language grows, still in its own very unique way, I wonder what clues it gives to the way he views the world.

I am trying to ask him more involved questions, although I'm not really sure how much of an answer he'll be able to give me. For example, Sunday he kept requesting to go to Kroger with me. (I had mentioned going there, but quickly decided I was too comfortable on the couch to really make the trip.) But Henry wouldn't let it go. Finally I asked "why is it that you want to go to Kroger?" He thought for a few seconds, and then said "I want to get those Lazytown coloring books again." (We bought 2 Lazytown coloring books at Kroger around Christmastime and haven't seen them since. I don't know if they got taken to school and disappeared, or are at my parents' house...) Anyway, I was impressed with his answer.

When he is behaving in a "dysregulated" way, I have tried asking him why. "Why do you keep grabbing your brother?" "Why are you being so grumpy tonight?" He answers those questions also, and this is really interesting. He says "I don't know why, mommy!" in almost a tortured-sounding voice. It is an answer that makes me sad, but we are getting somewhere. It seems that he understands the question and is able to verbalize an appropriate answer. Maybe in time as our communication grows, we will be able to figure out some reasons together.

He has some other declarations that are amusing and a little puzzling. I have mentioned some of these before, but he continues to come up with new ones. If he is being "disciplined" in some way, I think he is trying to argue, but with his own unique logic:

"Please use your spoon to eat your yogurt" (as opposed to his utensil of choice: fingers.)

"The spoon is too messy mommy!" (Even if I haven't said "because it's so messy to eat with your fingers" he anticipates my argument and tries to refute it.)

"Take your hand off your brother" (I recently put their car seats next to each other in the van- may have been a mistake.)

"I already took my hand off my brother daddy!" (Ummm, no you didn't.)

"Ms. F is here to take you to school."

"Ms. F is not here! She is driving away!"

Henry continues to say that he misses one of us pretty frequently. But he has added a new family member to his repertoire: his brother. "I miss Tommy." That made me feel pretty happy. In his own way Henry is letting me know that (after 2 years!) he has accepted that other kid as a part of his family.

overheard this weekend

(Cough, cough from upstairs)

Bill (calling up the stairs): "Henry?"

Henry: "Yes Daddy?"

Bill: "Are you OK?"

Henry: "Yes Daddy."

Bill: "Good. I love you buddy."

Henry: "I love you too Daddy."

That may seem like a pretty boring exchange to some of you, but would not have happened at our house 6 months ago. Bill came smiling around the corner and said "did you hear that?!"

------------------------------

(Tommy is carrying around something of Henry's)

Henry: "Tommy, may I have that please?" (Said in a quiet voice, not the house-on-fire voice that you might expect.)

Tommy: "Bubba, here go." (Hands it over.)

Henry: "Thanks Tommy."

------------------------------

These are the little things that autistic kids need help with. These are the things that his teachers work on all day, every day. And it's working- he's getting it- it just takes a lot of time and a lot of persistence and a lot of patience.

I've realized that a good, quick way to explain the differences in parenting these two boys is this: I can tell Thomas "oh, don't touch that Tommy, that's not safe." And he's likely to stop touching the thing and reply "not safe mommy." (That's not to say that he listens all the time, of course.)

But if I were to say the same thing to Henry, especially when he was younger, he would have responded by screaming at me. Either because he didn't understand the concept of "not safe" or because he thought he was in trouble, or because he just didn't like being told "no"... I can't say why exactly.

But parents of autistic children sometimes have to find sneaky ways to communicate with their kids. We have to pussyfoot around saying "no", or trick them into stopping the thing they're doing, or into eating something new. That's what's so exhausting about it. And hard to make others understand.

Henry and I have to go through this little ritual when he takes medicine. It's MUCH MUCH MUCH, a thousand times easier than it used to be. But still, we have to talk about how he doesn't want to take this medicine, etc. Several years ago he was prescribed some cold medicine that was purple. Ever since, every time he takes medicine, he says "which medicine do you like the best?" (wanting me to pose that question to him) So I ask him, and he responds "the purple medicine." Then he opens his mouth to take the current medicine. Why do we have to have this little exchange every time? It somehow comforts him, or makes him think all is right with the world, if we talk about the purple medicine first.

Getting in the car in the morning is similar. Bill is already at work, so every day Henry says "you miss your daddy." And I have to figure out which of the responses will comfort him today: "He's at work." "You'll see him later." "He misses you too." "I miss him too." "We'll all be together tonight." I try a couple of these and then Henry repeats the one he likes. Then I tell him I love him and shut the car door.

I'm trying to keep a notebook around so I can jot down things that both the boys say. Here's one more:

Henry: "You want some jigsaw fruit."

Kate: "Jigsaw fruit? What's that?"

Henry: "It has cherries and pineapple and peaches and grapes."

Jigsaw fruit = fruit cocktail

10 things about Henry

(This picture is almost a year old, but I like it. At the time, it was really something just to capture these two interacting at all. It is getting better now.)

Hmmmm. This will be a bit of a challenge, as I don't want to repeat things that you already know, like "Henry likes puzzles".

1. His middle name is Davies, which is also his father's middle name, his grandfather's middle name, and was his great-grandfather's middle name.

We mostly just picked the name Henry because we liked it, although my grandmother did have a brother named Henry.

2. Henry never really had a nickname until Thomas started calling him "bubba". That has kind of stuck with us now.

3. Henry loves to eat fruit. He hates to eat vegetables. He will eat a pound of grapes but will gag if you force him to eat one cube of carrot from the mixed vegetables.

He also likes to eat sausage links, pasta with tomato sauce, cereal with milk (but with his fingers- not with a spoon. Ugh.) He will not drink milk.

4. When he was small Henry used to like to watch the weather radar on tv.

5. Henry has always loved books. He has always loved to be read to and I just can hardly wait until he can read. I feel that day approaching and I know it will open a whole new world for him.

6. He has never had a successful haircut by a professional person. I (who have no skill whatsoever) have always cut his hair in the bathtub. Luckily he has those messy waves which hide my mistakes.

7. Henry likes to "help" me bake. He gets a chair to stand on and likes to talk about the recipe. Sometimes he'll stir a little.

8. Some of you have also said this about your children- Henry has a way of charming people and making them fall in love with him. It's very interesting that these autistic kids, who can be socially inept and unaware of others' feelings, have their own charm that is so irresistible.

9. At the zoo last week, Henry decided his new favorite animals are the reptiles. (Before that it was the "sea creatures".) We visited the reptile house once and then once more before we left. We stayed for the longest time, watching those snakes that don't really do much. I'm curious about why he found them so intriguing.

I had been wanting to set up an aquarium, but now I'm wondering if we should get a lizard or something. Are there some types that eat "lizard food"? Because I definitely don't want to have to keep crickets or mice in the house...

10. At age 9 mos., Henry tested allergic to cats and milk. When we had him tested again last spring, he tested allergic to NOTHING. And let me tell you, the testing process (holding him down to have his back pricked over and over) was not pleasant. I guess the resulting information was worth it.

(Here I am at Thanksgiving dinner with my Henry.)

Henry is quickly settling back to normal. I have been pleasantly surprised because his teacher has been sick this week, and I would think that upheaval at school would lead to some distress, but I haven't seen it at home. This morning he did say "you miss Ms. H so much!" He said it totally independently- we weren't even talking about her at all.

Today they took a field trip to the "big main library" downtown and were going to have lunch at Bob Evans. Henry has been looking forward to it for weeks-I'll be interested to hear how that went.

This morning we had a minor achievement, for me and for Henry. I was bustling around in the kitchen, trying to make him and Tommy their frozen waffles and link sausage breakfast. Tommy asked for more banana. Normally I would have run in to the table to get it for him. I don't know what possessed me, but I asked Henry if he could please get the rest of Tommy's banana for him. Henry didn't bat an eye or say one word, he just grabbed the banana and handed it to Tommy. I had to ask him to peel it- he didn't realize that Tommy doesn't know how to do that, but Henry did not protest once. Actually, he got a little upset once I started praising him for being such a great helper and big brother. Sometimes it seems like he gets a little embarrassed when you praise him.

This was a big step for Henry, but also for me. I often overlook the opportunity to challenge Henry, either because it's easier/quicker to just do it myself, or because I'm not sure if he'll react positively or negatively.

a good day, a bad day, and a party

A doctor in this area has arranged for special screenings of new movies at a local theater for special needs kids and their families. The sound isn't quite as loud and the lights aren't quite as dim as in a regular showing, and no one minds if your kid runs up and down the aisles or talks loudly, etc. Saturday they were showing Chicken Little.

Now, on Saturdays we usually go to the library. And, like so many things with autistic kids, the more times we do it on a Saturday, the more Henry thinks that's ALWAYS WHAT YOU HAVE TO DO ON A SATURDAY. So, Saturday morning, when I asked if he would like to go see Chicken Little, he said "you want to get that movie from the library." I replied that it wasn't available at the library yet- you can only see it in the movie theater, and he got all agitated and said "you don't want to see it in the movie theater! You want to go to the library." OK, so I thought that was the end of that. Then, about 2 hours later and around the time we would have needed to leave, he comes over out of the blue and says "you want to see Chicken Little in the movie theater." I guess he had to warm up to the idea for awhile before he would agree to it. So we hustled around and got dressed and ran out the door and headed to the movie.

We went to one of these (Shrek 2) about a year ago and left after the previews and credits. But this trip was much more successful, and we stayed for the whole thing.

Henry was really a lot better behaved than many of the kids, but he did shout out inappropriately a couple times, at exciting moments, so it was nice to be in an environment that was friendly to such behavior. We stood up in the aisle at the end and danced together and that is going to be one of my favorite memories for awhile!

We also went to the library later that day (of course), but we were lazy and drove instead of walking.

Sunday Henry seemed really agitated and was being really difficult with regard to his little brother. He doesn't physically hurt him or anything, but he shouts at Tommy whenever Tommy comes near anything of Henry's, and refuses to share, etc. I mentioned this to Henry's teacher yesterday and she is going to help me come up with some tools to use at home to help with his behavior. She said she'd be happy to write a social story for us. At school Henry has a social story about "using gentle hands with his friends" because he often scratches or pinches. If he uses gentle hands all day, his name stays on the smiley face. If his name stays on the smiley face all day, he gets to pick a reward from the reward box. I have resisted these kinds of reinforcers at home, frankly because it sounds like a lot of work and structure that it might be difficult to follow on the weekends, etc. But it may help on the "bad" days when we find ourselves constantly saying "you need to be nice to your brother."

It breaks my heart because Tommy is going through such a sweet phase right now: he is always picking up one of Henry's books or toys and bringing it to him, saying "book, bubba." On a good day Henry says "thanks Tommy" and takes it from him nicely. But on a bad day he screams and tears it out of Tommy's hands, or else pushes it away. Tommy has also recently started saying "sorry" without any prompting. He'll bump my arm and then throw his arms around me and say "sorry mommy, sorry." So I don't want Tommy to "unlearn" these good habits he's learning because his brother has still not learned them.

Yesterday Henry's class had a "fall party". We made some crafts involving pumpkins and turkeys, ate apples and cookies,etc. I was blown away when Henry sat down and made a hand print turkey- he didn't flinch when we painted his hand, and in the past those kinds of sensory things would really flip him out. It was fun to go and see his classroom. I really have to hand it to his teachers- there are only 5 kids in the class, but their ability levels are SO different. It must be such a challenge to balance 5 different class plans! One child with very good verbal skills came over to me and said "are you Henry's mom? What's your name?" And answered some questions that I asked him. But there were a couple children that I didn't hear speak at all, and one little girl kept trying to eat things that she shouldn't... Those teachers are very special people! We are definitely thankful for them this season!

siblings, continued

Well, I opened this can of worms and the more I try to write about it, the more I feel like I am failing miserably!

I'm starting to think that the right thing for me to say is- because of Henry's disabilities, I am more aware and appreciative of Tommy's abilities. And vice versa- each one makes me appreciate the other. My life would be beautiful with only either one of my children, but with both of them...
My husband will tell you that I have a lot of "internal dialogues" where I debate my feelings and waffle back and forth a lot. So I think every time I catch myself saying "it's so fun to see Tommy pretending his stuffed bunny is reading a book. Henry never did something like that" I feel GUILTY. Guilty for comparing them.
But because Henry was my first child, this is all really fun for me- I didn't see typical development happen, and it's pretty cool. (Tommy actually did that pretending with the bunny today and I took his picture like a big geek.)
And we know that there will be a day when we wish Tommy was more like his big brother. Like the first time he asks to have a big birthday party at Chuck E. Cheese. We'll say "Henry never cared about having a birthday party. Why does this one have to be so high maintenance?" :-)

siblings

"I thank God that I have him. I often wonder what it would be like if Andrew was our only child. I am sure it would be fine because we wouldn't know any better, but having a kid like Brian with his amazing imagination really keeps our life fun."-my2sons

I have been thinking about this subject a lot- unlike many of you out in "blog land", we chose to have another child after having one with an ASD. (Although Henry wasn't technically diagnosed at the time we got pregnant, he was clearly delayed and was receiving services for those delays.)

My family seems a little different in that our ASD kid is the middle child (or the oldest, depending how you look at it). Our family, as many these days, is complicated. Our oldest child is actually my step-daughter. She lives with us full time and I definitely view her totally as "my child," but she started living with us full-time when she was in first grade, so I have not had the day-to-day mom and only mom experience with her (step-parenting could be the subject for another blog!)

So, Henry is MY first child- the first one that I carried around in my abdomen for 40 thrilling weeks and visited in the hospital after he was born (a subject for another post), attempted to breastfeed, took to so many doctor appointments... I sat in the waiting room and cried on my husband's shoulder when he got tubes in his ears and his adenoids removed. I cried with pride and happiness when I realized on his third birthday that he knew all his letters and numbers. And I beam with delight when he tells me that he had a good day at school or that he loves me. Almost every day of his life I have told him that he makes me happy.

The thing that I want to get my head around here, and find a good way of saying, is how I feel about our youngest child. If I say that he brings me so much joy because he is "normal/typical", does that insinuate that Henry doesn't bring me joy? If I say that each milestone he reaches effortlessly makes my heart skip, does that translate into "all Henry's milestones have been such a struggle"? If I say (to quote Brian and Andrew's mom) that Thomas "keeps our life fun", does that mean we don't have fun with Henry?
Am I over-analyzing this? Probably. But I want to figure out the right way to articulate it- so please help me! Those of you with more than one child, how do you think about the differences in your children? Can I celebrate Tommy's "normalness" without condemning Henry's difference?

my boys

This picture is misleading because they don't usually enjoy being this close to one another. (They were sitting on my back- horsey-style.) But that's a topic for another day.