Friday, February 23, 2007

My mom sent this to me yesterday, and I thought that someday I should share it with my blogging friends.

Today I visited one friend and then another who were both feeling kind of low, and decided I should hurry up and post it.

The sun is shining here today- I hope it will lift everyone's spirits!


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Thursday, February 22, 2007

moving on, always moving on

My 3-year-old always seems to be dragging me into his future. When I want him to still be watching Teletubbies, he's watching the Power Rangers. When I want him to hold my hand, he wants to do it himself.

It has never been so with Henry. He's always been happy with the status quo and usually been reluctant to try something new. That, combined with his developmental delays, has made me shield my eyes from the future in many respects. I don't know when he'll learn to ride a bike, for example, and (this is a secret) I don't really care that much. I'll keep on reading him books forever if he wants...


Except, wait, all of a sudden he knows how to read!

For much of preschool and kindergarten, I was just trying NOT to think about "what if he gets kicked out of this class for being aggressive". I couldn't afford to think much about what the next 13 years of school would bring.

It kind of feels like I've been holding my breath for a looooooong time. And now, suprisingly, I'm breathing a little more again. The past couple weeks these strange thoughts have popped into my head- like I should teach Henry how to answer the phone. Or maybe we'll get him a cell phone when he's a little older for if he's at home by himself. Or I should give Henry some chores to do and an allowance so that he can learn about money and buy himself a new dvd or book once in awhile.


That's the kind of stuff a parent thinks about with a regular old 7.5 year old. And here I am, thinking it. Cool.

I talked with his teacher yesterday about IEP goals. This is the most communication I've ever had about goals, and it feels wonderful. Every other IEP meeting seemed like it came out of nowhere and I was ill-prepared. I kind of felt like I was going there so they could tell me about my kid. So then when everyone turned to me and asked me MY goals for Henry, I was like uhhhhh, errrrr, I want him to like school and make friends. Brilliant, mom.


So anyway, I feel much more like this is a team effort now and it's nice. I will share the goals when they are written down, but in general we talked about the following:

-working on other leisure skills and activities. Mrs. C said that during leisure time Henry always chooses a book, puzzle, or computer. She would like to see him choose to play a game with someone once in awhile

-raising his hand and waiting his turn to speak. I brought this up because lately I notice him interrupting a lot. I think he has always done it, but we have all been conditioned to think everyone stop what you're doing- Henry is talking. All eyes must be on him. It can't be that way for the rest of his life!

(Side note: I am becoming more aware of this as I try to assess what effect having a "disabled" brother might have on Thomas. When we were at Tommy's 3-year checkup, Henry kept wanting to talk to the doctor- show him his books and papers, etc. I told him that Tommy was talking to the doctor and Henry would have to wait his turn. But Henry is not used to hearing that.)

-some basic fine motor skills that still need work: buttoning, snapping, zipping, squeezing glue

-conversation skills/how to greet his peers and chat with them. Mrs. C told me that she realized that Henry would say "I miss my mommy" as a sort of conversation-starter with adults! She couldn't figure out why he would say it when a new person came into the room, but then figured out that it was a way to break the ice!


-she said that Henry is at (or above) grade level for his academic skills, so those do not need to be part of the IEP.

He will still "tantrum" (her word) on occasion and refuse to do work somewhat frequently. And she would like to see him get away from needing a reward for everything; like he often is bribed to do his independent work with the promise of earning computer time, etc. But I think back to where we were a year ago- don't even want to think about 2 years ago- and he has progressed 100%.

So check with me in a year and he'll probably be calling me on the phone to ask when I can take him to spend his allowance!

Tuesday, February 20, 2007

happy birthday sweet darlin'

Dear Thomas,

Yesterday was your third birthday- you are sure becoming a big boy. You are hoping that with this birthday you will be as big as your brother Henry and your friends Graham and Mitchell. I hate to tell you that those boys all keep getting older too, and you will never catch them!

Two was a very fun year, and I think three will be even better. This year you learned to use the potty, learned to do a forward roll in gymnastics, started sleeping in a big boy bed, and did a lot of superhero play fighting.

Image You are becoming very aware of emotions and are learning to communicate your feelings in ways other than screaming and crying (although you still do your fair share of that; you're only 3 after all). You often surprise me by saying "mommy, are you getting a little bit mad?" I don't expect you to read my body language and sighs so well (the other people in the family often don't!) But of course, it's to your benefit to detect when I am grumpy and try to make me happy instead.

Image You are quite a good talker- so much so that I have to remind you that certain other children aren't babies; they are actually your age, but just can't speak as well as you can! You do get hung up on particularly tough words, like accident and hospital, but don't we all?

You currently like to wear shorts at all times (earlier in the year it was costumes) and change your clothes several times a day. Wearing shorts is actually the privilege that I take away from you when you need to be disciplined. What will I do for a threat in the summer?
Image You are just a really great kid. I worry a lot about comparing you and your brother, but I do want to say that, at least partially because of him, I find so much joy in your imagination and your easy confidence. And your measly tantrums are a breeze- I can handle them with one hand behind my back. (Or one hand holding on to your brother.)

I think you have been really good for him; one day last week I went in to wake him up and found him in bed with you! And I delight in hearing your little conversations in the back seat: "Tommy, can I please look at that?" "OK Henry, but don't mess it up." "OK, I won't. Thank you Tommy." "You're weltome."


Image This is one of your favorite outfits of all time. The Halloween shirt says "Here Comes Trouble". You think the monsters on it are superheroes, I guess because they are wearing capes.

ImageYesterday you received a few different kinds of blasters, a tool belt, and some play-dough, among other gifts. And since there was no mail delivery yesterday, I suspect you'll get more in the mail as the week goes on.

We took Spiderman stickers to gymnastics class last night too. What a fun day!

You make me feel very happy Thomas. I tell you that a lot, but I don't want you to ever forget it.

Love,
Mommy

Friday, February 16, 2007

Jack Frost is my favorite Valentine

It's been a weird couple of weeks. That Sunday after we went to Monsters Inc., Henry had a fever and no appetite. So I planned to take Monday off and take him to the doctor. (School ended up being cancelled on Monday and Tuesday due to the cold.)

Henry had Scarlet Fever which, for anyone who doesn't know, is a variation of Strep that comes with a rash. He started the antibiotic on Monday but really didn't start feeling better until Friday! His nose and eyes were runny and his face was all red from the rash- wow- he was a mess.

Then this past week we had some more severe weather. School was cancelled for the kids and even the university where I work was closed on Wednesday!! Even though I had been home quite a bit the week before, it is not fun to be home with a sick kid. So having a day off in the middle of this week was a real treat.


Speaking of treats, Thomas and I started the day off by making brownies in a heart-shaped pan:

ImageHere was the pretty view through the kitchen window:

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Later that morning we went outside to shovel and play in the snow. Several inches had fallen, then a layer of ice, and then more snow. So a little one like Thomas could just walk on top of the icy layer. It was a challenge to shovel because I had to chop up the ice first with the edge of the shovel. But I haven't worked out in weeks (months?) so I kind of enjoyed the exertion and the fresh air.

ImageI was slightly discouraged that Henry didn't want to come out and play. The week before, when he was sick, he had talked about wanting to play in the snow. But it seems that for a lot of these kids talking about wanting to do something and actually wanting to do it are two different things. And it didn't help that I had turned off his DVD to make him get bundled up and come outside. I know that was a huge mistake, but I didn't want to sit around for another hour until the DVD was over...
So Henry came outside and cried and begged to go back in until I let him. Sigh.
ImageAside from that incident, it really was a nice day.

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The layer of ice made everything sparkle. The snow shushed all the sounds of the busy street near us, and there weren't many cars out anyway, so I could really hear the creaking of those ice-covered tree branches.

I also talked to one of my brothers that day (the one who lives near DC)- it turned out that he had a snow day too! Nice of mother nature to give us a day off, wasn't it?

I was supposed to have my conference with Henry's teacher that day, but now it looks like we will have a phone conference instead. I will report about that next week, as well as a certain someone's THIRD birthday...

Thursday, February 08, 2007

different-ness

When I found out that my brother was gay, my first emotion was worry. Because I have this perverse need to read about every bad thing that happens in the news, my first thought was that my sweet baby brother would get beat up by some psychotic homophobes and left to die in the cold somewhere.

My second thought was a frustration that now his homosexuality would define him. That he would be "my gay brother", rather than just my brother. And that anytime I was in a situation where someone made a homophobic comment or joke, that I would need to stand up and proclaim "hey- my brother is gay! Take that back!" (This is embarrassing to admit. I should have been doing that all along anyway...)

When my son was diagnosed with autism, my first gut reactions were much the same. I was worried about how others would see my child and even how I would see my child- through this lens of autism. I feared that this "difference" would open up new dangers to Henry, not to mention new obstacles.

Would he always be "my autistic son", Kate's "autistic brother"? Would I have to get on my soapbox all day long and educate people about autism? Would Henry be just a one-dimensional autistic kid? Would anyone look past that and give him a chance to show them his personality?

I'd like to say that I overcame those feelings and worries. But I think what I really did was just smother them with our day-to-day life. The people around me all know about Henry, and the ones who don't are polite enough grown-ups that when it comes up in conversation they just sort of say "oh?" in a surprised way and usually don't ask many questions.

We quickly discovered so many people with huge hearts who choose to work with disabled kids and make a difference in their lives- most of the time Henry and I are both in a warm cocoon of understanding folks who make us feel safe.

But...

Saturday night we went to a get-together at a friend's house. Ironically, this is the same house we visited back in the summer (I can't find the post now, for the life of me, but) at that time I was so pleased with how easy it was to hang out with friends, and how well Henry did.

This time it was different. These friends have 2 kids- ages 7 and 9. Quite a few of their neighbor friends were over. It being SO COLD, the kids were inside, but they were being really wild, really rough and really loud down in the lower level playroom.

Henry found a DVD he wanted to watch (Star Wars) and settled in on the couch with about 10 other DVD boxes to look at/hold on to. I took Thomas upstairs with some Lincoln Logs, and when I came back downstairs I found a group of boys standing around Henry. One of them was saying "take one from him and see what he does". One boy snatched a DVD out of Henry's hands, and the others laughed.

Yeah.

I marched over, grabbed the DVD back from the kid, and said something like "don't do that- he doesn't like it." My head was foggy and I felt like I might either cry or throw up. Needless to say, I pretty much stayed by Henry's side the rest of the night. I frankly don't think that he thought twice about those kids or what they did. But I'm having a hard time getting past it.

One of the boys said something like "I wanted to look at one of those and he grabbed it from me." So I suppose that's how it started- one of the boys wanted to look at the DVDs and Henry didn't let them. Then they figured out that he was different and it would be fun to mess with him...

We had a busy day that day. I had taken the boys to see Disney on Ice that morning, along with my friend and her daughter. I was feeling great because Henry did so well there. Aside from covering his ears because the sound was too loud, he was happy and engaged the whole time. He said "this place is great!" and thanked me for taking him.
So this incident with the kids was like a slap in the face. It made me realize that these boys are Henry's age- this is how typical 1st grade boys act. Typical 1st grade boys are way too cool for Disney on Ice. I mean, Bill said it made him glad that Henry isn't "typical"- those kids were too obnoxious and out of control! But I like to live in a fantasy world where, even though my child is different, he will never be teased or singled out. Everyone will be gentle with him and try to engage in his interests.

To get back to the point I made in the beginning... most of the time I can feel like we are just an ordinary family. But what happened on Saturday makes me feel like we are "the family with an autistic kid." I am the mom who sits down in the playroom while the rest of the moms are drinking wine upstairs. Autism does define us. And it does define how others (especially other children) may view my child. I will always need to be on guard, especially in unusual situations. And I guess I will need to prepare Henry for what to do in those situations. But I don't want to think about that right now. I just want to hold him on my lap forever and tell those other kids to go sit down and shut up.

To be fair, things calmed down later in the evening (one really wild boy went home) and I did sit with the other women for a bit. They were talking about tv shows I don't watch, and I kind of thought that I enjoy my son's company just as much on a Saturday night.
Here are a few pictures from the Disney on Ice outing. This first one was taken in the car on the way there. Tommy said "Henry is holding my hand" and I was like "in a nice way?!" So I had to take a picture of it. He's never done that before!
ImageWe had front-row seats:

Image Henry reading his program:

Image Covering his ears:

Image I don't really know why I am making this connection today, between my brother and my son, and my reaction to their different-ness. I just don't want anyone I love to be in a vulnerable position. Ever. Dream on, eh?

Friday, February 02, 2007

one of those bragging posts

Last night Henry tread water in the deep end while his teacher counted to twenty.

Last week he learned to sit-dive.

He has been attending Spanish class with the other first graders and is doing very well, according to his teacher.

One night this week he had left a Spiderman book open on the floor to the Doc Ock page. (He leaves a trail of papers and magazines and books that are open to particular pages that he likes.) Thomas stopped to pick it up and Henry ran right over to stop him. "Henry," I said, "you weren't looking at that book anymore. Can you please let your brother look at it for awhile?" (This is the kind of request that I've uttered fruitlessly 100 times before.) But this time, to my shock, Henry said "ok", and handed the book over.

So many times this week he has said "thank you mommy" without being prompted. And "have a good day Kate" when we drop her off at school, also unprompted. (There were times earlier in the year when I tried to prompt him to say "have a good day" and he would shout "HAVE A BAD DAY KATE!" instead.)

This morning he announced "it's February 2nd. It's Groundhog Day. (And then in a sweet soft voice) Happy Groundhog Day mommy."

Kate has 2 study halls this semester (didn't have any last semester). So she decided to help in Henry's class a couple days a week and make it an independent study project. She started this week and it's going great. She has also been helping him with his homework after school and, by all accounts, is able to get him to do lots of things that the rest of us can't.

She helped Bill coach his 6th graders Wednesday night too.

Happy Groundhog Day everyone!