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.

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.

"I did good"

I had to leave work Monday because I was crying. Not just a few tears in my eyes- that happens just about every damn day around here. It was the kind of crying that doesn't seem like it's going to stop anytime soon. So I just ducked out the back door and went home to cry some more and then wash my face.
I don't really want to get into why I was crying- it was just one phone conversation too many about a stressful topic that has been the subject of countless conversations over the past few months.
When I got back to work, my friend said that she had been feeling like her emotions were really "close to the surface" lately. Another work friend told me he had been feeling very emotional over the weekend. So maybe there is something in the air at this time of year. I dunno.
It is the season of weddings (we have 2 in June) and graduations (we hopefully have 2 in June) and thus of new beginnings. I need to get a handle on this emotion thing or I will be bawling my way through the next 6 weeks.
I would like to share something really special that we experienced this weekend, and hopefully somebody out there is still reading.

Saturday Henry had his first Miracle League baseball game. I'm just about the last person you'd catch being all sentimental about a sporting event. But this program is one of the coolest things we've been involved in.

The league is for kids with all sorts of disabilities. Each child is matched up with a "buddy" who helps them play (to whatever degree he or she needs help). Every kid gets a hit and every hit gets on base. Every kid scores a run every time. The final score was 24-24, and something tells me it will be the same next week.

Each player has a nickname, and the announcer plays it up like a real ball game:

Up next for the Marlins is number 1, Hammerin' Henry. Henry hit a single his last time at bat, and has been working on some weight training in the off-season.

If you've been reading here about Henry for any length of time, you know that he's not much into physical activity or, well, anything done outside.

But this was different. Henry fielded just about every ball, with gusto. That's not to say that he actually caught any of them. But he ran and ran and didn't give up. (The kids in the light blue shirts are the buddies. Henry's is the girl in the pink cardigan.)

He was so proud of his two home runs. On the ride home he seemed very dazed- that was a lot of activity and a lot of new stuff to process. But he kept repeating "I did good!"

Also, we had "transitions" lenses put into Henry's glasses, so they turn to sunglasses outside. The sun has always seemed to really bother him, so maybe they are a contributing factor to his enjoyment of baseball. Plus, they make him look really cool.
Another cool aspect of the Miracle League for parents is that we just sit in the stands and watch and cheer. Just like regular proud parents. We chatted with the other grownups around us; parents of both players and buddies.



As a side note, but another contributing factor to my "emotions close to the surface", as we pulled in to the park where these games are held, I realized that I had been there before.
Henry had attended 2 birthday parties here when he was 3 or 4 (pre-diagnosis). Both for kids who were cared for by L also. Both parties went relatively badly- but one stands out in particular. I remember having to carry Henry screaming to the car halfway through the party. He wouldn't leave the gifts alone and of course could not be persuaded that they didn't belong to him.
I remember feeling so frustrated and alone and so sad for Henry because he was missing out on special peer activities.
5 years later, we've both come a long way. My expectations have undoubtedly changed. And Henry's abilities and understanding have brought him far. He listened and followed directions and tried something new that day with bravery and enthusiasm. Yes, the situation had modified rules and expectations. Yes, it was different from the league that other 2nd graders will play in. But it was a success. He did good.

the pictures are misleading- this post is a downer

Remember that good/bad post the other day? That's how my life feels all the time lately. A friend asks about my weekend, and I debate: do I tell report the good or the bad? Because we are living a twilight zone of some of each these days. And to dwell on either for too long seems to not give enough attention to the other.

I can give the sun-shiney report:

-That Henry attended a different gymnastics class Friday; his teacher feels he is ready to move out of the special needs class and into just a "boys fitness" class. Bill said Henry did a good job and seemed to enjoy being "one of the guys".

-That Tommy went to a crazy bowling-alley birthday party on Saturday; he ran around in circles in his bowling shoes until his hair was plastered to his forehead and his cheeks were tomato-red; he hauled the 6-lb bowling ball up to the lane every time and dropped/threw it down- three times into the gutter (despite the bumpers) and once following up with a kick to get it going.
-That both boys successfully rode their new (from Christmas) bikes all the way to the library (over 1/2 mile from home); that Henry required very little help and rode with the posture and attitude of an old man- slow and steady; Tommy needed quite a bit of help at first- for all the things that come easily to him, riding a bike was not one; but by the trip home he was easily keeping up with his brother, and even "skidded" a couple times (how does he know about skidding?!)

how about some lists?

Sorry, but some days it's all I can muster...

bad:
-I was only able to take one day off last week to have "spring break" with the boys
good:
-They did fun stuff as usual with their babysitter, so I'm the only one who feels like I missed out. Bonus- today when Henry went back to school, Tommy said "oh, but now I have to go to L's by myself." He really likes having his brother with him.

bad:
-The day I did take off was rainy and cool, so we went to the science center rather than the zoo.
-Also, every other family in the state went to the science center that day.
good:
-The boys were amazingly patient when we had to wait in all those lines.
-We still got to go to the zoo, on Saturday.

bad:
-At the science center Henry was obsessing about something or another and tugging on my hand throughout the "Goosebumps" exhibit- the one Tommy was really interested in. I feel like we scooted out of there and Tommy got short-changed.
good:
-Tommy recited every word I had told him about the exhibit after we got home. He was really paying attention and really into it.
-We watched the 3D "extreme screen" movie and it was super cool.

bad:
-Pajama pants worn at the zoo don't block the cold breeze very well and may induce much whining and complaining in their 4-year-old wearer.
good:
-Binoculars can make you forget your cold legs.
-Tommy loved pretending he was a scientist, studying animals with his binoculars. L takes them to programs at the metroparks, so he has learned that "scat" is the scientists' word for "poop" and that it can be studied. Every 4-year-old boy should know this.

bad:
-Tommy fell asleep on the way home from the zoo (at 5:30) and didn't wake up until 5:30 the next morning.
-He was not awake to appreciate the face painting we got right before we left, and instead left much of the paint on his pillow and then my pillow.
good:
-Because he was asleep so early, it was easier for me to talk to my high school friend who called that night.

easter

I thought I had everything I needed for the Easter baskets. Then, on Friday, we were talking about Easter coming up, and Henry piped up with "the Easter Bunny will bring me a book about animals!"

He will, huh?

So, a dutiful mother, I ran out on Saturday to get a book about animals (I mean, one more book about animals, as we already have at least a dozen.)
Henry was happy with this one, and scampered off into a corner to look at it. His brother tried to get him interested in the Legos and moon sand in their baskets, but Henry was all about the book.
But a little while later, the truth came out: "It was a sticker book."
"The book about animals that you wanted was a sticker book?"
"Yes."
"...well, the Easter Bunny must not have known that. Did you see a sticker book you wanted somewhere?"
"At the mall."

They had taken a class community skills trip to the mall and he must have seen the book there. Oh well, the Bunny gets an A for effort.
(This child, the one who always wants to wear shorts and short-sleeved shirts, now doesn't even want to wear a shirt at all!)

We had a nice day of treats, coloring eggs, visits from family and friends, and some yummy food. The only element missing was church, which we really need to get back to.* Bill told the boys the Easter story, and offered to read it out of the children's Bible. Henry got kind of agitated and started asking for "the Jesus books". We told him that we didn't have any Easter books, and that all the Christmas books were put away.

Well, you know what happened: I ended up going down in the basement, pulling out all the bins of Christmas decorations, and finding the Christmas story books for Henry! Even though the Easter story has a happy ending, I can't blame Henry for preferring the "baby born in a barn" story to the "man tortured until he dies" story. Can you?

The timing was just perfect when I got Henry out of the bath Saturday night; the sun was setting and shining right in the bathroom window.

Henry glanced out the window and then smiled, mesmerized by the sun. "The sun is setting," he said. The moment was so perfect- my son stopping to show me something I had been too distracted to see for myself. I had to run and grab the camera (as he stood there, shivering). And then, of course, I couldn't get a shot with his eyes open.

manic and love to the homeschoolers

When will I learn that drinking a larger size coffee doesn't make my brain work better? It only makes it work faster and more maniac-ly (not taking the time to figure out if that's a real word or not. See what I mean?)

Some things I'm thinking about this week:

-Should I investigate the autism school in our area? The one that we looked into back when Henry was 4 and didn't have a diagnosis yet. He's doing pretty well in our public school so far, but his success seems completely hinged on Mrs. C pulling the right tricks. On days she is out sick or because her children have a snowday (as has happened A LOT in the past month), half of his progress flies out the window and has to be re-built. How great would it be if the whole school were full of teachers who get it?

Henry has been having more 3-star days than 5-star for the past few weeks. Nearly every day he says he "feels sick" and should stay home from school. When I try to press him further on what feels sick, he (as has been the case for his whole life) cannot tell me. So I have been ignoring it.

His eating has become even more particular- he won't eat pasta and sauce anymore and I have resorted to trying different sauces and different shapes of pasta (he always asks for "the seashell kind".)

It seems like something is up. His teacher has not been sending homework home regularly either for the past few weeks, making it hard for us to keep a routine at home. Perhaps she is just very busy right now with IEPs, etc. But, again, I'd love it if my son could be in an environment where everything does not rely on ONE teacher.

-Henry has been asking to "sleep longer in your bed", meaning he wants to fall asleep in our bed and stay there. He never ever did this as a younger child, it is relatively new, and again makes me wonder what is up.

-What will Henry do this summer? Let's search the internet... Here's a super-cool looking program right near our house, but it costs twice as much a week as the Easter Seals program he's attended in the past. I wonder if there is funding out there that Henry could qualify for? Where would I look? Who would I ask? I'll add it to my to-do list.

It seems like my to-do list is always growing. I know that's true with everyone.

I'm not sure what's bringing on this frenzy. Could be the closing of the jury duty chapter in my life. Could be the impending IEP meeting. Could be the house-cleaning I attempted this weekend. Could be the feeling that winter will be ending soon and spring is coming. Could be the realization that my high school senior (pictured above enjoying the snow) is getting ready to graduate soon.

Operation Forced Independence was fairly successful this weekend. I seem to be the only one for whom this is a big deal. I hadn't even told Bill of my Big Plan, but when Henry asked for sausage for dinner Friday night, I proclaimed "you can learn to make it yourself!" Bill didn't miss a beat, but walked Henry through how to open up the package and put the sausage links in the microwave. Kinda makes me think Bill's been trying to do this for awhile.

Saturday Henry made himself some sausage again (the kid will eat pork sausage links for every meal) and some waffles in the toaster. He didn't eat the waffles, though. (I feel that way sometimes, that a meal just isn't as good if I have to make it myself.) He also spooned out some mixed fruit for himself (pictured above).

Sunday he asked for waffles and I told him to come in the kitchen and we'd make them together. At that he changed his mind and said he wanted cereal with milk. I made him help with that also, but I guess it's a little less involved. And he can still see the tv while pouring cereal and milk.

I have had him get out his own pajamas and put them on by himself every night, and attempted to show him how to run his own bath Sunday night. I made a better effort to have him clean up one thing before getting out another. This is a never-ending battle with a kid who likes to have 3 puzzles out at once and all the prints and books related to a certain move spread out around him at any given time.

He didn't really protest too much at any of this, and I think this will need to be a new state of mind for all of us.

One note I do need to make to Kyra and all you other brave homeschoolers: I don't think my son would respond to this direction as easily if his teachers hadn't already "broken him in" for me. He has learned a lot of "if/then" instruction from school, and a lot of "you can do it by yourself".

Heck, I would still be helping him go to the bathroom if he hadn't gone off to kindergarten and I realized that his teacher probably doesn't pull down his pants for him and put him on the toilet! I'm not kidding, that was a huge realization for me.

I am a big big believer in getting help and advice from as many good sources as I can (this blog being just one example of that.) I have learned so much from friends, family, teachers and childcare providers who have shared their wisdom and philosophies with me.

Given all this reliance on others to help me, I am simply awestruck by homeschooling moms. Of course I hope that you have a good support network of other adults and professionals just as I do. But your day-to-day contact with them has to be minimal when you're down in the trenches teaching an oppositional child how to read or write or add.

belated new year report

I've been having a bit of blogger's block.

A few good things that I want to report are kind of dwarfed by some crappy stuff going on right now that is not really fit for public consumption.

Some of you know what I'm talking about. Those who don't, I don't mean to be all mysterious... There's just good and bad in every family at any time and it really stinks at the times that the bad stuff is a big elephant in the room. You are all trying to pretend it's not there and at the same time avoid being stepped on by it. Or pooped on by it. Gosh, I could just go on with this metaphor (or is it a simile?) all day...

But I won't.

Instead I'll share some photos from New Year's Eve. Let me say up front that the boys stayed home with their dad that day, while I went to work, and remained in their pajamas all day. Also, they have both gotten haircuts since these photos were taken.

Tommy got his own Leapster for Christmas, I'm not sure why he was just watching Henry play with his...

We made our own pizzas that night:

And fruit salad:

The "fruit salad" was such a huge hit. They ate more fruit than pizza. Too bad many of us lose that natural love for fresh fruit and replace it with ice cream! (We had ice cream that night too, of course.)

I dozed with the boys and on the couch from about 10 - 11:50 pm, waking up to see the ball drop. Not a craaazy New Year's Eve, but a pretty nice one.

_______

Last weekend I took Henry and Thomas to the zoo. I know I write about that all the time, but it is what I like to do when I feel like we need to get out of the house. Henry doesn't last long at the playground, so the zoo is an outdoor activity that involves some movement and some interaction and some fresh air and doesn't cost too much money. It also requires some decision-making and compromising, which are important for all of us to practice. And, we all just like to see the animals.

Henry likes to shout "hello" to each animal, and hop around, flapping and humming, as he watches them. Of some of the animals he commands/requests certain activities: "jump in the water penguin! Jump in! C'mon little penguin, don't you want to swim?"

This time each boy got one of those souvenir pennies- they each picked the wolf pattern.
_______

Henry's teacher contacted me last week about making a change in his schedule. He had been joining the second grade class for language arts, but she was proposing that he join them for science and social studies instead. These subjects involve more discussion and participation, and less "pencil and paper" work (his least-favorite thing).

Their monthly "community trip" this time was to the bowling alley and Frisch's restaurant for lunch. Henry loved the bowling, but didn't eat any of his lunch. He ordered mac & cheese, which was undoubtedly different from his mother's very special Kraft mac & cheese. Next time I will have to preview the menu and suggest what I think he should order.

_______

This morning Thomas cried on his way to L's house. He said he didn't want to go there- something to do with D, this other boy she watches. "Me and D always boss each other" he sobbed.
"Well, you don't have to play with D," I offered.
"But I like to play with him!" He cried even harder.
"Just try your best to be a good friend and to play nicely with him."
"I do try my hardest but it just gets worser!"
"And if you have an argument and get put in timeout, just try again after your timeout. We just keep trying, right?"
"I know that but I just can't remember it because I'm not four!"

Oh my gosh. I didn't know whether to laugh or cry. The whole discussion was sweet and a little funny. But he was so so truly sad and worried about this- worried that he would "boss" his friend, or his friend would "boss" him. My heart ached. Sometimes life must seem so overwhelming when you're not four.

I'm sure Tommy was over the whole thing by the time I got to work. But I was emotionally spent before the workday had even started. Sometimes my life feels quite overwhelming. Do you think it's because I'm not 39 yet?

the writing program, and how I lost my marbles

(Not to dog Henry's teacher, but...) She always referred to it as "story writer", then when I asked for more info she told me that it's called "pro writer by Don Johnson company."

Upon further searching it appears to be called Co:Writer, put out by Don JohnsTon Inc.
__________

It was time to start watching for the bus this morning. Henry wanted to watch the next show on PBS (Curious George). Thomas, who had been pretending to be a baby all morning: crawling and speaking his big boy version of baby talk (everything starts with a G, like goo goo), was now not a baby anymore, but a big boy who was doing all sorts of pretend surf and skateboard tricks in the living room. Some of the tricks involved banging into me and his brother.

I was worried that Henry's morning would start off badly if his brother pissed him off, so I asked Tommy to stop being so wild. Then I asked him 3 more times. Then I screamed YOU ARE NOT BEING A GOOD LISTENER! I'VE ASKED YOU OVER AND OVER TO STOP BEING SO WILD AND YOU ARE NOT LISTENING TO ME! GO TO YOUR ROOM!

And thus, in the attempt to ensure that Henry had a good morning, I ironically ruined his morning instead. He was angry and crying when I put him on the bus, and wouldn't give me a hug or kiss- wouldn't even look at me, as a matter of fact. I've been mother to this kid for over 8 years now. Why do I still get it so wrong some days?

question for a weird Friday

Well today was very strange. Both boys were going to be at home today, and Bill had taken the day off to be home with them. We had our parent-teacher conference scheduled for this morning and then I was going to go in to work.

But Bill developed this horrible pain in his left elbow yesterday. He doesn't remember doing anything specific to it, but it suddenly became swollen, red and so painful. He was able to get an appointment with the doctor this afternoon, so I just took the day off also. You'd think it would be a nice day at home for all of us, but it really was a day of running around. That's the way it goes sometimes.

Bill ended up having an infection in his elbow! They had to drain fluid from it, which was very painful. (I'm trying to be as sympathetic as I can, but ladies, you know that I want to say "as painful as delivering a baby? I think not.") So I just finished my antibiotic yesterday, and he started one today!
____________

My question for all of you stems from our parent/teacher conference. Henry is doing quite well academically and in many social situations. He is making progress on all of his IEP goals and doesn't argue with his teachers about everything anymore.

He is, however, aggressive. I hesitate to say that this is a new problem, because it has always been a component of Henry's behavior. The discussion today, though, seemed different. His teacher basically said that Henry's unpredictable aggression is the only thing holding him back from spending most of his day with the regular ed class.

Many of the specialists who work with Henry have never seen this side of him. I can tell that this frustrates his teacher because she needs help in identifying why it happens. Sometimes the adults in the classroom can see the antecedent. But other times, to cite one of her examples, Henry will be reading in one quiet corner. Another child will walk into that corner to get a book, minding his own business. Henry will look up, stick out his leg, and trip the child. Or he will push an unsuspecting child from behind. Or he will unexpectedly scratch or pinch another child in the face.

These actions not always directed at the same person, nor do they always occur in the same situation.

The adults can handle this aggression to a certain degree, when it is directed at them. But Mrs. C. says that Henry often attacks children who cannot defend themselves. (I assume this means nonverbal children- she is always very careful about not naming names.) And her biggest fear is that he will injure one of the regular ed 2nd graders, which could potentially generate a huge political stink, and harm Henry's chances of being accepted in the general ed classroom.

The teachers try different types of reactions to these situations (talking quietly, giving him a big squeeze, threatening the loss of a privilege). Sometimes these attempts work to calm Henry down, sometimes they don't. And at those times, despite his small size, it is a real challenge for the adults to get Henry "off" of the child he has chosen to attack.

(The word attack may sound a little harsh, but the more I hear, the more it sounds like that's what's happening. I don't want to turn a blind eye to my son's bullying.)

The teachers, paras, and therapists seem to generally feel that these actions are almost uncontrollable on Henry's part. We have seen a bit of this behavior at home, but definitely not to the same degree.

I'd love to hear from any of you (either in comments or e-mail me) who have been through this with your child. Henry has never taken any medication, and I am wondering if that is the path that would help him? Bill talked to the pediatrician briefly today, and I will have to get back to you with the name of the medication that they discussed.

I certainly don't want to jump into anything, but I also want to help Henry as soon as I can. I thought about trying to get back in to see the psychs who diagnosed him, but I fear the wait to get in now would be even longer than it was 4 years ago.

Thanks in advance for your help, friends. Have a good weekend!

a couple rough Sunday outings

The Sunday before Halloween, we went to "Boo at the Zoo"- kids wear their costumes and get candy at treat stations. We did this last year and had a fun time. This year a new attraction was added: we bought tickets ahead of time to attend lunch with Spiderman!!

I gave it a bit of forethought, just enough to think "I'll have Bill with me, so if Henry doesn't like it, or gets restless, we can separate and each take a kid." This was not enough forethought.

First, we had to wait in line to get in to the event, then more waiting in line to get our lunch (a turkey sandwich and yogurt or madarin oranges- woo hoo!) Luckily, the boys and I left Bill in line out in the hallway and ducked inside the big meeting room just in time for Spiderman to appear. There were probably 150 people at this event, in a big echo-y room. The Spiderman theme music started, and he ran in and started working the room.

Henry was covering his ears, of course, but was smiling and watching. We were at the less-populated back of the room, but Spiderman made his way over to us and headed right for Henry! He said "How ya doin' buddy?" and held out his hand! I prompted, "Henry, can you shake Spiderman's hand?" and Henry managed to do so, letting go of one ear and pressing it to his shoulder, to free up his hand. "Nice to see ya, Henry" Spiderman said, and then tousled Tommy's hair and kept on moving.

Both boys beamed, ear-to-ear. He really talks! They both exclaimed. I was impressed that Spiderman had singled out the kid covering his ears, and picked up on Henry's name.

A photo with Spiderman was included as part of the ticket price. There was also face-painting available. Henry opted for a bat painted on his hand, which I thought was a good compromise. Spiderman also put on a show about safety.

For this show, he asked for volunteers from the audience- kids to act out scenes about crossing the street and not talking to strangers. I want to go up on stage Henry announced. Bill told him to raise his hand. So there Henry sat, covering his ears and raising his hand at the same time.

And felt so ashamed, but I sat there thinking please don't pick him please don't pick him. Isn't that awful? But I didn't think Henry would know what to do if he was chosen. Maybe he would go up there but then another kid would piss him off and he would pinch that kid, or push him, or scream...

And then Spiderman said "OK, how about this Batman over here?" He was talking about a different Batman, but Henry didn't realize, grinned and stood up. My heart cracked right in two at that moment.

Bill and I talked about it later and we had so many conflicting emotions. Bill pointed out that, a year ago or more, Henry wouldn't have been nearly engaged enough in what was happening to even notice that kids were going up to the stage, much less to want to go up too. He wouldn't have even put it together that Spiderman had chosen Batman to help, and he was dressed as Batman.
But, there were all my worries about could Henry handle it if he actually was chosen. I'm ashamed of that now, because none of the kids really got what they were supposed to do up there- it was actually pretty painful to watch. Henry probably would have done fine.

When the show was over, everyone lined up to get their picture taken with Spiderman. This was so ridiculous. Bill and Henry left to walk around the zoo and then Tommy and I did the same. I realized that I could get back in to the event in about half an hour and see how the line looked at that point. So that's what we did, and it worked out perfectly. This "Spiderman" was so great. He really took time to chat with each kid.

He told Tommy that The Thing is one of his friends, and he would tell The Thing that Tommy said "hi" the next time he saw him. (Of course, this led Tommy to believe that The Real Thing was there at the zoo somewhere, and could we find him?)

Henry had a really rough time for the rest of the zoo visit. I was really caught off-guard because we go to the zoo all the time, and it always goes pretty well. We can only figure that this time was too different: daddy was with us, the Spiderman thing was too exciting, we didn't rent a buggy for them to ride in like we usually do...

This being an autism detective is so hard. You have to re-trace your steps and try to figure out what was it that put Henry over the edge?

He just didn't really want to look at anything, or didn't want to stop looking at certain things. This is where I wonder if the buggy facilitates more than I realize. Maybe hopping in the buggy and looking at his zoo map is an important calm transition time between exhibits?
We did have a nice ride on the boats:
And these otters were one attraction that he loved.

But we eventually had to drag him away from them.

If you had been at the zoo that day, here's what you would have seen. Us dragging Henry/Batman behind us while he complained.

I just hate days like this. I feel bad for Henry that he is so dysregulated. Out of whack is the term I used that day. But I also feel bad for Tommy that his holiday outing is messed up too because Henry is out of whack.

The other rough Sunday outing happened this past weekend. Kate and I took the boys to the rec center pool at the University where I work. (Yes, I was quite pleasantly surprised that Kate wanted to come along!) This pool is sooooo fun for kids- we all had a great time.

But then it was time to leave.

And Henry didn't want to leave.

We haven't had a scene like this in quite awhile. So long, in fact, that I'm sure the last time it happened I was able to just carry Henry out of wherever we were. But we can't carry him anymore.

Poor Kate bore the brunt of it, as I was carrying most of our stuff and the little brother wanted to hold my hand. Henry pinched her and pinched her, and kept shouting all the scripted angry lines he could think of:

Are you crazy?

You ran out on me, and I took the blame!

You won't believe me anyway!
It's kind of humorous now, to think about a little 8-year-old shouting You ran out on me, and I took the blame! But it definitely wasn't humorous at the time. Definitely not for the big sister or the little brother. I do the best I can to thank Tommy for being a "good listener" and to explain that Henry has a hard time understanding things, even though he's older, and that that's why Henry gets extra grumpy sometimes. But it just stinks. For Henry too. I wish these transitions didn't have to be so so so so hard for him.

And I started thinking how long until he learns some really mean, foul things to say when he's angry? Then we'll be dragging him through an echoing rec center while he shouts obscenities. It's bound to happen.

As I was telling a friend about the weekend, and about how Henry slept in so late on Saturday, and about how he tripped going up the steps to the bus, she commented that maybe he is growing. I wonder if it could be as simple as that? I hope. I hope.

the weekend of (mostly) thwarted expectations

The weekend started off well. Thomas mixed up a healthy batch of "dirt soup" Friday night.

Kate was in for the evening, due to an infraction the previous weekend, and we had a pretty good chat. This semester she is helping in a first-grade class every afternoon, and Friday night she told me all about the kids and the things she's been doing with them and how some of them like to hug her and hang on her... I guess there is a boy in the class who is tube-fed and wears a backpack that carries his bag of food (Kate couldn't remember what the name of his condition is), and another boy with Tourrettes. This is the same teacher that Henry was mainstreamed with last year, so I asked if Mrs. C gets all the special needs kids. But Kate said no-there are some in other classes. I get so caught up in my own little "special needs" world that I am surprised to hear there are so many others in the same school district!

Saturday was the big day for Henry and Daddy. You might remember that back in the spring we tried to go to our college football team's open scrimmage... and it was a disaster. Every other idiot (ooops, I mean fan) in town was trying to take their kids to the stadium for $5, and we couldn't find a seat. That day we decided to get tickets to a game this fall so that Henry could go and have a better experience.

Once you understand what happened in the spring, you'll see why Saturday went the way it did: kickoff was at noon. Bill and Henry got there around 11, allowing enough time to walk around and check out the crowd. But Henry was single-minded. He had a ticket this time and he had a seat, and by God he was going to sit in that seat and not move from it:

Here he is talking to me on the phone, sitting in the stadium an hour before kickoff.

I think all the pre-game stuff went ok, and the pre-game band show was the main thing Henry wanted to see anyway. Then it started to rain. And wet clothes are a sensation that Henry is very adverse to. So once they got rained on and he wanted to take off his clothes, it was time to call it a day. Our team hadn't even scored yet (they went on to win, 20-2.)

Bill knew, going to this experiment, that it might not last long. And he has learned from years of experience with Henry how to handle occasions like this. So although he was disappointed to leave without Henry experiencing a touchdown, he wisely just went with the tide. Henry will remember it as a really special and exciting experience, and Bill was able to finish watching the game at a bar down the street, so all's well that ends well.

Tommy had been asking to go to the zoo, and I was looking forward to going on Saturday, just me and him- something special while daddy and Henry were doing something special. Thomas wanted to sleep a little extra Saturday (clue #1), then when he got up, he said "I have a yucky cough like M------". A boy at L's house had developed a barking cough last week, and Tommy had indeed caught it from him.

He still wanted to go to the zoo, so we did. Now usually Henry is our tour guide and drill sergeant: dictating which animals we will see, and how long we will look at them. Either because he was sick, or because he is used to his big brother being the boss, Tommy had no real direction to offer at the zoo. He didn't seem to care what we looked at. He did get to sit on all the photo-op animal statues that we usually blow past, and walk on a lot of low walls. But the reptiles and the coral reef were the only sights that he really requested.

When we returned home from the zoo and gathered on the couch to catch up with Kate and Henry, Thomas rolled his face over between 2 cushions and vomited. His fever went up to 102+ and his cough and sore throat worsened.

So the rest of the weekend was spent worrying and comforting and taking his temperature and trying different medications. We're seeing the doctor this afternoon, but of course his fever seems to be gone today. His voice, though, is totally shot! He can only whisper. It's very odd to have my usual chatterbox be so silent.

His first day of preschool is Friday, so hopefully he'll be back to normal by then. Tune in next weekend for a full report.

Our weekend had some ups and downs. Sometimes lately, I get cocky and think "Henry used to have all those behaviors, but he's doing so much better now- he's making great strides." And he is- he is. But then the day comes that we do something unusual, like picking up an uncle at the airport, and Henry reverts back to his house-on-fire voice and his insistent and overpowering manner, and I think that maybe we haven't come so far after all.

My brother-in-law was in town briefly yesterday. We headed out to the airport to meet him and wandered around. The confusion was my fault- instead of just saying we would drive by the passenger loading/unloading area, I said that we would park and all come in to the airport. I consistently make this mistake. I always think "boys like airports- this will be fun." And I always forget that it's confusing and crowded and both boys like to ride escalators*, and you can't even see any airplanes anyway, now that unticketed folks are not allowed beyond the security check.

(*I have a weird little escalator phobia- I have recurring dreams where I need to get on an escalator going down, but it's going really, really, really fast and it's hard to step on and hard to hold on... I obviously have done a good job of hiding this fear, because my kids love to ride the escalator!)

Henry kept shouting that he wanted to ride the escalator: repeating it non-stop in the house-on-fire voice. We rode it a couple of times, and then the boys and I just gave up and went back to wait by the car.

Once Bill found Uncle J., we all headed for breakfast at Bob Evans. As soon as he walked in the door, Henry spotted a Strawberry Supreme Pie in the display case. He pressed his face and sweaty hand to the glass and shouted "I want this pie! I want this pie! I want this pie!"

Why so much shouting? And why so much anxiety? You know, now that I think about it, I did not prep him ahead of time on the plan. Maybe if I had told him a few days ahead of time, this would not have all been so exciting and overwhelming. Duh. I know this stuff, but then I forget it. Or I think it's not necessary for a little Sunday morning trip to the airport.

On Saturday, Henry and I went to the library. There was a girl there, a few years older than Henry, who was reading aloud to her mom. She seemed to really struggle- one of those kids who reads
so
slowly
that
it's
hard
to
follow
what
she's
saying. Her mom was being kind of short with her, and correcting her in a gruff way, even when her mistake was something as simple as saying "of" instead of "off". I felt sorry for this girl, to be spending her Saturday afternoon in such an unpleasant way, and to be struggling so much with her reading. I hoped that she would grow to enjoy reading in spite of that.

At the same time, Henry was quietly reading aloud from the front cover of the Star Wars book on tape. "A long time ago, in a galaxy far, far away... Luke Skywalker had returned home to Tatooine..."

Yes, most of that was memorization, but it still gave me a lift. What a blessing- Henry has his share of difficulties, but I'm so glad that reading isn't one of them!

and now, back to your regular programming

My husband hopes that I don't hurt myself getting down off my soapbox. So I'll be very careful...

To update on the past couple posts:

-I decided to go with Barnes & Noble gift cards for the teachers, along with a little candle from the Bath & Body Works sale right next door. I was tempted to get gift certificates to a local ice cream place (mostly because that's what sounded really good to me) but decided B&N was safer- you can get not only books, but music or movies...

-Bill and I had a date Friday night, in honor of our anniversary. We walked to a neighborhood restaurant for a slightly fancy dinner and wine. Then we walked a few doors down to that ice cream place I just mentioned. Finally, we walked to the local little movie theater to see The DaVinci Code. What a fun night. I hope this doesn't sound terrible, but sometimes when we have a great time alone like that, it makes me extra irritated by our "real life" with kids. Maybe that was a reason for my mood Saturday?

Another reason I get frustrated with an issue like Henry going outside is that I wonder- "what is the best for my child?" It just seems like it's a mom's job to encourage her child to go outside. But it's a weekend, and the rest of us are doing things that bring us pleasure. Is it wrong to let Henry do what brings him pleasure? What is my obligation here as his mother? To force him to do something because it is "what kids are supposed to do"?

-I have not been "pissed off mom" ever since Saturday. I have still had my moments, but I have tried (as Kyra wisely suggested) to acknowledge when I'm being grumpy/irrational and apologize.

This morning I tried to get Henry to write his name on the gift tags for his teachers. Don't ask me why I go through that routine with him when I KNOW that he is going to refuse and get upset. The thing that makes it even worse is that his 2-year-old brother chimes in "yeah, Bubba. You write your name!" This makes Henry mad. Then, when I say "Tommy, you don't need to get involved with this. Just eat your breakfast" and Tommy starts crying, it makes everything worse. I ended up saying "you are both making me really mad" and throwing down the gift tags! Mature. But I didn't say what I wanted to say, which was "how damn hard is it to write your name on this gift for your teacher?!" I guess that's the thing- it is really damn hard for Henry.

As we walked out to the car for his ride to school, he told me that he doesn't want to go to the new school. I think he is really worried about that. And it's hard for me to comfort him, because I'm worried about it too. This year went so well. It's hard to start over.

confession

I got impatient with Henry yesterday. I don't mean to announce that as if it's the first time that's ever happened (or the last), but I do feel sad about it.

Yesterday we had perfect weather. Blue sky, cool in the morning but warming up to 80 by the afternoon. Thomas, Bill and I were in and out of the house all day.

Henry doesn't like to do anything outside. When he was 2-3 he would want to walk around the neighborhood and look at cars and have the same standard conversation about certain houses and landmarks. He also used to like to sidewalk chalk, although it would just be him dictating to me what he wanted me to draw. But now he just likes to stay inside. He will play on the playground when we visit one, but just playing outside in the yard holds zero interest for him.

Yesterday I suggested a trip to the library and then the grocery store, as a way to get him out of the house. Those both went well. But once we got home he just wanted to watch a DVD or lay all his crumpled and well-loved "Disney papers" all over the floor. Chicken Little seems to have replaced Lady and the Tramp as his current favorite subject, and he carries around two Chicken Little sticker books, a Disney Magazine with Chicken Little on the cover, the Chicken Little book on CD book and some printouts from the Disney website.

Anyway, last night Bill was cooking out, and I wanted to sit outside with him. Tommy was coming in and out of the house, and Henry was in the house. Henry kept asking me to find one more of his papers, and then a particular Star Wars book that was my brother's, (from back when Star Wars, Episode IV was the FIRST Star Wars.) I couldn't find the book anywhere and he kept perseverating on it. I finally just told him (in a not very nice way) "Henry, it's nice outside and I want to go outside- why do you have to stay in here with all these movies and papers spread all over the floor?!" He just looked at me and said "NO!"

When I think about it rationally, he is probably feeling extra dysregulated. The end of the school year is coming, and he knows that he'll be going to a different school next year. Also, his nose was running all day long yesterday, and the Claritin I gave him didn't seem to help.

It's just hard, as he gets older and more communicative. Sometimes I feel like I should be able to have a "rational" conversation with him in which I say "hey, it's nice outside. Let's turn off the movie and go outside." And he says "ok mommy."

(But lots of times I wish I could have a rational conversation like that with my teenager also, and it's not so easy.)

It's not all about autism. It's just about being a mommy. I was frustrated with Tommy yesterday too, because he wouldn't stop climbing on me and wanting juice, but NO not THAT juice, a different juice. Etc. etc.

Bill gave them a bath and I tried to put them to bed early. We read a book together in Henry's bed. But both boys kept whining that they wanted a different book or that "Bubba push me." Bill could hear us on the monitor and he said it didn't sound like me when I said "both of you need to be quiet or we're not reading any book."

I don't want to be that mom- the one who's pissed off and short with her kids all the time.

So that's why I'm going to take a walk this morning- some time for just me. Maybe today will be better.

the hospital

Henry has pneumonia. He and I spent this afternoon at the hospital.

The antibiotic has not seemed to be helping, his temp. has still been high and he has been coughing. The results from his urine sample turned out to be negative anyway. So today we went to the pediatrician again, and he sent us to the emergency room at Children's Hospital.

It goes without saying (but I will say it anyway) that today was not my favorite day of motherhood. Here are a few of the moments that threatened to make me FREAK OUT, except that I couldn't because then Henry would really be in trouble:

-In the triage area, when they put the little clip oxygen sensor on his finger- made me flash back to baby Henry in the NICU.

-When we first got settled in our ER room and I heard a child in another room start screaming "NO NO NO IT HURTS!" (I later found out that it was a girl whose teeth had been knocked out by a softball, and the doctor had to shove them back in!!!!!!) My personal hell would be to spend eternity in a children's hospital emergency room.

-When the doctor finally came to examine him, and Henry started telling him "I go to kindergarten Dr. Larsen. I do art and library and computer lab. I want to be a construction worker when I grow up."

-When the folks trying to take his blood and put in an IV said "whoa- look how big that vein is- that's a good one! Oh, wait, what happened? It collapsed. We'll have to try again buddy."

I had been needing to use the restroom for like an hour and a half, so decided to take that opportunity. I could hear Henry yelling all the way down the corridor: "please stop, please stop! You already checked my arm! My arm is ok! Please stop!"

When I got back to the room, the IV was in and taped to a splint on his wrist- another NICU flashback.
_________________

They took an x-ray and found the pneumonia, although neither doctor had been able to hear it with the stethoscope. They gave him a dose of an intravenous antibiotic (I forget the name) and told me to continue the one at home also.

On one hand, I am relieved to finally know what exactly is wrong. We have a 7-year-old nephew who is a leukemia survivor, so Bill and I were imagining all kinds of awful things. But on the other hand, I am still very worried because our little guy is very sick. Please say a prayer or send some healthy vibes Henry's way. Thanks.

I never thought I'd use the word urine in a post

Henry's been sick again. When Henry's sick, I get this feeling like I can't breathe, or think straight. I mean, partly because of the sleep deprivation. But there's something else. It's like all my worst fears come out in a cloud to strangle me: Henry's always been so small and so fragile. He gets hit worse by illnesses than other kids. And that combined with the fact that he's not a great communicator just makes me hysterical. He has this random high fever with few other symptoms that made me think he caught some kind of mysterious exotic disease at the zoo last week.

He was sent home from school Friday with a fever around 101 degrees. Over the weekend we measured it at 102.6 a couple times, and 103.7 once (all under his arm). We went to see the doctor Monday. I carried Henry in and he whimpered on my lap the entire hour that we were there. In the end the doctor said his ears were fine, the strep test was negative, and he just has a virus that we need to wait out. They usually last about 72 hours.

OK, thanks. Except it had been about 75 hours already at that point, with no sign of improvement.

I talked to Henry's teacher Tuesday- I knew that the girl he rides to school with had been out sick and wanted to find out what had been wrong with her. It turns out she vomited in the car on the way to school one day (riding in the back seat with Henry). So that must be where this came from, except that she only missed 2 days of school, and Henry seems likely to miss 6. Poor little guy.

He keeps asking to go to the library, which is pretty funny. I'm like "buddy, you need to be able to walk on your own two feet and go to the bathroom on your own before we can make a trip to the library." And he lays there and looks at me with those glassy eyes and his too-rosy cheeks and says "I am feeling better mommy." Sure you are.

We went back to the doctor's office on Wednesday and saw a different doctor in the practice. A young woman this time, fresh out of med school and a new mother to boot. I find that new doctors and female doctors seem to take their time a little more and be more sympathetic. And Henry responds much better to them. He let her check his ears, mouth, feel his abdomen, all with no protest and no help from me (a kind way of saying that I didn't have to hold him down.)

I mentioned that he has been wetting the bed, and that prompted her to check for a urinary tract infection. Instead of stealthily trying to get Henry's urine, I made the mistake of explaining to him "you're going to go pee pee in this cup. And we're going to give it to doctor H. Isn't that funny? That's kind of weird, huh?" And he's looking at me like I'm crazy if I think he's going to cooperate with that.

I begged him several times to go potty, which he of course refused. He also refused to drink anything- smart kid. He kept saying "you don't want it out of a cup!" And I started to realize that he must think we were going to make him drink the urine. That's what you do with something in a cup, after all. So I eventually did what I should have done in the beginning: let him go potty "just in the toilet", hid the cup behind my back, waited until he started peeing, and then reached behind him and caught some.

The urine did show sign of an infection, so we have been on an antibiotic since last night. I had hoped he would feel better quickly and could go on his field trip to the fire station today, but it was not to be.

The worrying just never stops. It ebbs enough that I kind of forget what it feels like to jump up at night when I hear him cough, or check on him obsessively even when he's not coughing. But then we have a week when the worrying is back in full force and it really knocks me on my butt.

blah

I swear it's like clockwork on this stupid blog: as soon as I write a suzy sunshine post like the one about how thankful I am, then I slip into a funk from which there seems to be no escape.

I am still so grumpy, and I don't think it's all just because our Easter plans got messed up. I am just irritated lately- irritated with our dirty house and smelly trash and the street I need to take being closed and our dirty car and the people at work and the Starbucks cup (decaf still) that is dripping on me every time I take a drink.

(And, no, it's not PMS. Not because I'm pregnant, Wendy! But it's just not the right week for that excuse.)

I'm even getting frustrated with the kids, which makes me feel even crappier. The weather has been so warm that I got out some hand-me-down soccer slides for Henry to wear. He could not manage to keep them on his feet, and when he did he did this shuffle walk- like if he lifted his feet off the ground the shoes would fly right off. I was getting so impatient with him.

I started to tell a friend at work about it (the person who had handed-them-down to us) and before I could even finish the story she said that her son hated those shoes and could never keep them on his feet. So I was chalking it up to Henry's-autism-makes-him-so-uncoordinated, when really the shoes are messed up.

Last night Henry kept saying "I'm sorry mommy." And I don't know why- he hadn't been scolded for anything. I think he could just tell I was mad and figured saying he was sorry would make it better. How sweet and pitiful is that?