I walked into the boys' bedroom yesterday morning to wake them up, and Thomas startled me by saying plaintively "I just wish the Ninja Turtles could be real." Perhaps he was dreaming about the Ninja Turtles and woke up with that thought on his mind- lying there in the dark, half awake, half asleep.
Moments like this often catch in my heart. Here's something I don't like about being a mom, a parent, a grown-up: I don't like being the voice of reason all the time; the dream-crusher. I remember how that felt as a child; to so love the book you were reading or the movie you were watching that it pained you to acknowledge that it wasn't real- that E.T wasn't hiding in your closet, your car couldn't really fly, or you wouldn't uncover a mystery if you took enough notes in your spy notebook.
I know that L has had to break the news to Tommy that he is not a superhero and cannot fly. I know she had to tell him this for his own safety. But yesterday morning, in the pre-dawn dark of my sons' room, I just said "who knows? Maybe they are real and we just have never seen them." And I felt like a 4-year-old all over again.
Thursday, October 23, 2008
Monday, October 20, 2008
an autumn outing
Yikes! I don't want to leave that rant up here too long! And, we did something fun and photo-worthy yesterday...
Remember our 10th anniversary trip? Bill suggested that we take the boys down to that area for the day, hike around and have a picnic. We decided to stop at the first area of the park that we came to. Unfortunately, we didn't remember that this area was the most treacherous. I literally remember thinking when we were here before "I would never bring my kids here- I would be terrified." Ooops.
Tommy was so very excited, and just hopping and jumping around like he does, right near these slippery drop-offs. And we worried about Henry just as much, for almost the opposite reason: he is so weak and uncoordinated that he might just stumble and fall down and panic...
So we just held on really tightly. And of course everything turned out fine.
I ended up being the only one who slipped at all. On one of these broken steps. I was holding Henry's hand at the time, and made a big deal about how he "saved" me.
Remember our 10th anniversary trip? Bill suggested that we take the boys down to that area for the day, hike around and have a picnic. We decided to stop at the first area of the park that we came to. Unfortunately, we didn't remember that this area was the most treacherous. I literally remember thinking when we were here before "I would never bring my kids here- I would be terrified." Ooops.
Tommy was so very excited, and just hopping and jumping around like he does, right near these slippery drop-offs. And we worried about Henry just as much, for almost the opposite reason: he is so weak and uncoordinated that he might just stumble and fall down and panic...So we just held on really tightly. And of course everything turned out fine.
I ended up being the only one who slipped at all. On one of these broken steps. I was holding Henry's hand at the time, and made a big deal about how he "saved" me.
Henry pulled the same routine he had at the pumpkin patch: I'm not going to look at the cliffs. I'm not going to hike on the trails. I just want to wait in the car... But it was easier since Bill was there with me- one adult to talk Henry down and the other to be excited with Tommy. Henry ended up enjoying himself, as always. He specifically asked me to take this picture:
There was lots and lots of step-climbing, and we were so proud of Henry for the way he kept up. I had visions of carrying him up and down steps when he was 5 years old and just didn't have the strength, or his little legs were too short. But he's a big boy now and didn't complain once. He even enjoyed balancing on some of the stone walls: "It's like a balance beam!"
There was lots and lots of step-climbing, and we were so proud of Henry for the way he kept up. I had visions of carrying him up and down steps when he was 5 years old and just didn't have the strength, or his little legs were too short. But he's a big boy now and didn't complain once. He even enjoyed balancing on some of the stone walls: "It's like a balance beam!"
Stamina is never a concern with Thomas, and yesterday was no exception. He could have stayed twice as long, climbing and jumping and making up adventures. In the picture below he is holding a piece of rock that he found and had declared to be "a dinosaur's tooth!" (This picture is kind of dark because we were under a huge rock overhang- I don't know if that's technically considered a cave, but that's what we called it.)
This picture was taken from inside one of the cave areas. Can you blame the old man who made this his home? If you take out all those people wandering around, what a gorgeous retreat.
This picture was taken from inside one of the cave areas. Can you blame the old man who made this his home? If you take out all those people wandering around, what a gorgeous retreat.
Friday, October 17, 2008
if you can get past the rant, you'll read about the open house
First, a little rant that I can't keep inside: For some reason we have been getting US magazine at my office. Jenny McCarthy is on the cover this week, with the story title "How I Saved My Son." I have tried (mostly) to keep quiet about her- some of my friends may like her or agree with her and I try to keep a live and let live mentality... But this woman does not speak for me. She is not "autism mom" personified, and I'm afraid that the general public sees her that way.
US magazine is not high-level journalism, of course, but this article contains quotes from her like "I made a deal with God the day he was diagnosed. I said, 'You fix my boy, you show me the way and I'll teach the world how I did it.' ... We're recovering kids from autism! Evan was nonspeaking, hands flapping in the corner and didn't know anyone was in the room. Look where he is now. I healed a vaccine injury." Well, as long as it's all about you!
It really reads as if this woman is using her child's disability to maintain her own fame. Please, God, let me write a book about my child's struggles, so that I can go on Larry King and yell at doctors from the American Academy of Pediatrics. If God were going to bestow special autism mom wisdom upon somebody? I can think of a dozen other women I know personally that he might choose- that he already has chosen, as a matter of fact. And those women put their heads down, get to work, hug their child and hold their friends' hands.
My son also has many more skills than he did when he was diagnosed. I don't claim to have cured him. He has grown and learned, like any child will unless he is locked in a closet somewhere. We all do our best Jenny, and I thank God for the other autism moms that I look to as sisters. But I don't count you as one of them. You are doing us all a disservice when you claim that you are the first and only mom to care enough to try to help your son. Your son will likely continue to struggle in his life. You need to stop parading him around as a "cure" story. You were and are blessed to have him in your life, and for all you think you have done for him? He has done more for you than you will ever realize.
__________
Ahem. Anyway. Last night a few exciting things happened:
1. Henry brought home a BIRTHDAY PARTY INVITATION. For a boy in his class. I honestly can't remember the last time Henry was invited to a birthday party. It was probably when he was 4 years old- for another kid at L's house. He has never been invited to do anything with a classmate.
2. We went to the open house at Henry's new school. We met Mr. D (the "best buddy" that Henry hangs out with at recess time), the classroom teacher, the music teacher, the classroom supervisor, and some kids in Henry's class. The cool thing was that the kids seemed to say hello to one another spontaneously- without parents urging and nudging them toward one another.
Mr. D told me that he and several others have been so touched by Henry telling them that he's "going to miss them". We talked about how that's Henry's way of reaching out- trying to let you know that he cares about you. I thought he only said those things to Bill and me, but whaddya' know? He has some other special people in his life too.
There is one mother that I recognize from the tour I took of another school for autistic kids this spring. (The tour that left me in tears). So I know her family is new to this school also. I was talking to one of the teachers when I heard her daughter come over and say hi to Henry. He said hi back. that was really about all, but my eyes met the girl's mother's eyes, and I knew we were both thinking the same thing. I knew we were both about ready to burst with pride and with relief that our children are finding more opportunities than had been open to them before.
As I said in my little rant above, our children will continue to grow and change and learn, no matter what we do, or even in spite of what we do. But I am hopeful that Henry's natural growth and learning will be fostered by his new school environment. I feel like we're on the right track.
US magazine is not high-level journalism, of course, but this article contains quotes from her like "I made a deal with God the day he was diagnosed. I said, 'You fix my boy, you show me the way and I'll teach the world how I did it.' ... We're recovering kids from autism! Evan was nonspeaking, hands flapping in the corner and didn't know anyone was in the room. Look where he is now. I healed a vaccine injury." Well, as long as it's all about you!
It really reads as if this woman is using her child's disability to maintain her own fame. Please, God, let me write a book about my child's struggles, so that I can go on Larry King and yell at doctors from the American Academy of Pediatrics. If God were going to bestow special autism mom wisdom upon somebody? I can think of a dozen other women I know personally that he might choose- that he already has chosen, as a matter of fact. And those women put their heads down, get to work, hug their child and hold their friends' hands.
My son also has many more skills than he did when he was diagnosed. I don't claim to have cured him. He has grown and learned, like any child will unless he is locked in a closet somewhere. We all do our best Jenny, and I thank God for the other autism moms that I look to as sisters. But I don't count you as one of them. You are doing us all a disservice when you claim that you are the first and only mom to care enough to try to help your son. Your son will likely continue to struggle in his life. You need to stop parading him around as a "cure" story. You were and are blessed to have him in your life, and for all you think you have done for him? He has done more for you than you will ever realize.
__________
Ahem. Anyway. Last night a few exciting things happened:
1. Henry brought home a BIRTHDAY PARTY INVITATION. For a boy in his class. I honestly can't remember the last time Henry was invited to a birthday party. It was probably when he was 4 years old- for another kid at L's house. He has never been invited to do anything with a classmate.
2. We went to the open house at Henry's new school. We met Mr. D (the "best buddy" that Henry hangs out with at recess time), the classroom teacher, the music teacher, the classroom supervisor, and some kids in Henry's class. The cool thing was that the kids seemed to say hello to one another spontaneously- without parents urging and nudging them toward one another.
Mr. D told me that he and several others have been so touched by Henry telling them that he's "going to miss them". We talked about how that's Henry's way of reaching out- trying to let you know that he cares about you. I thought he only said those things to Bill and me, but whaddya' know? He has some other special people in his life too.
There is one mother that I recognize from the tour I took of another school for autistic kids this spring. (The tour that left me in tears). So I know her family is new to this school also. I was talking to one of the teachers when I heard her daughter come over and say hi to Henry. He said hi back. that was really about all, but my eyes met the girl's mother's eyes, and I knew we were both thinking the same thing. I knew we were both about ready to burst with pride and with relief that our children are finding more opportunities than had been open to them before.
As I said in my little rant above, our children will continue to grow and change and learn, no matter what we do, or even in spite of what we do. But I am hopeful that Henry's natural growth and learning will be fostered by his new school environment. I feel like we're on the right track.
Wednesday, October 15, 2008
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.
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.
Sunday, October 12, 2008
so far, so good
Some of you may be wondering how Henry's new school is working out. I am really just trying to sit back and see how this plays out- trying not to rush to any judgment during these first couple months, so I don't want to draw any big conclusions yet, but I can share some things that have happened- good and bad.
(These pictures aren't related to school- just something fun Henry and I did together a few weeks ago. It turns out that our town has a Farmer's Market on Saturday mornings. One wouldn't know about this if one generally stays in her pajamas and drinks coffee 'til noon on Saturdays, so I'm a little late to this game. But we walked up one morning in September to check it out. Henry sat on that bench and ate almost a whole mini loaf of sweet potato bread. Then at home he ate FOUR AND A HALF of the six peaches we had purchased!!! )
So, anyway, school.
Remember the outgoing girl (let's call her O.G.) we met that first day on the school bus? Well she has become our entertainment every morning. She comes over to our car window, knocks on it, and then shows us what she's wearing that day (I have new Hannah Montana jeans, see?) or makes some other (one-sided) conversation, and then walks away again. One day I commented on her mom's Obama bumper sticker and, before I knew what hit me, outgoing girl had sold me 3 Obama t-shirts.
One morning she asked what we were listening to. It was one of our Disney read-aloud story tapes. "Henry," she announced, "I have a Lion King 1 1/2 read aloud that I never listen to anymore. You can have it. I'll bring it to the bus stop tomorrow. See you later." And she walked away. Henry's jaw was on the ground. "Is she going to get it?!" he asked.
That was a month ago. She has never found the tape but keeps insisting that she's looking for it. Her mom has no idea what read-aloud O.G. is talking about, so I'm not sure if they ever really had a Lion King 1 1/2 read aloud. O.G. brought us several Clifford and Arthur story tapes, but we all know that those don't compare to Disney.
Every morning as we approach the bus stop, Henry asks "Did (O.G.) bring the story tape?!" And every morning Thomas and I try to gently tell him that we doubt it.
I'm not sure why O.G. entertains me as much as she does- I think I just like seeing Henry interact with one of his peers. They have their little conversations (such as they are), and Friday he actually ran up to the bus and got on by himself for the first time EVER, chasing after O.G. and the elusive Lion King 1 1/2 read aloud. One morning O.G. reached through the window and started tickling Henry! I was ready for him to pinch her or shout something rude at her. But he just giggled, and then she walked back to her car. (!!!)
I've been glad to get to know outgoing girl's mom also. The first day that I got up my nerve to get out of the car at the bus stop and introduce myself to the other parents, I heard the whole story from her of how she and another mom had to fight our school district to get the kids bused to this school. O.G.'s mom told me that she doesn't think (new school) is perfect by any means, but that it is an improvement over what the district provides. That morning she basically told me what I wanted to hear- that I had made a good choice.
The most negative thing I can say right now is that I still feel communication is lacking. Some days we get those circle the smiley face reports home. More often we don't. One day Henry told us he had left his lunchbox on the bus and his teacher had given him an apple to eat. (Of course he didn't offer up this information- I had to bring it out with my interrogation skills.) I would have thought someone might have sent me a note home about that, (or even called me to ask me to bring in another lunch) but no. I sent an e-mail that night and got a response the next day, but after that I decided to just start a new communication notebook. There was one day last week Henry woke up at like 4:45 am. I wanted to send in a note, so they would understand if he seemed extra sleepy or grumpy. So I sent in a notebook and did receive a note back.
They send home fairly challenging homework every night, and Henry tackles it with absolutely no protest. This is very different from last year, and if he is working at school with the same agreeable attitude (which I can only assume he is) that is a significant improvement.
We are seeing a little more language, a growing sense of humor and, as Bill has noted, Henry seems "less stressed." When I ask about his day, Henry usually offers up whether he had art or music, and what they worked on in those classes. One night we were reading a Magic Treehouse book, and when he heard the character's name Jack, Henry piped up "just like Jack --- and Jack --- in my class!"
One silver lining I am trying to see in the lack of day-to-day communication is that it forces me to ask my son questions about his own day. Maybe he can tell me more than I think. One morning I was suggesting that he wear sneakers rather than crocs because they are safer "when you're in gym class or on the playground." "That's called recess," he corrected me.
"Right. Recess. What do you like to do at recess?"
"Mr. D is my best buddy."
"Do you hang out with Mr. D at recess?" "Yes."
"What do you guys do?" "We walk to the front desk, to see Mrs. S."
"Oh, really? Is Mr. D a teacher?" "Yes." "What class does he teach?" "He teaches in Mrs. C's class."
We have open house this week, as well as the book fair, so I will get to know all of these players a little better. I have offered to help in the classroom once a month, and hopefully they will take me up on that. (I had volunteered to help at the book fair, but they didn't need me!)
(These pictures aren't related to school- just something fun Henry and I did together a few weeks ago. It turns out that our town has a Farmer's Market on Saturday mornings. One wouldn't know about this if one generally stays in her pajamas and drinks coffee 'til noon on Saturdays, so I'm a little late to this game. But we walked up one morning in September to check it out. Henry sat on that bench and ate almost a whole mini loaf of sweet potato bread. Then at home he ate FOUR AND A HALF of the six peaches we had purchased!!! )So, anyway, school.
Remember the outgoing girl (let's call her O.G.) we met that first day on the school bus? Well she has become our entertainment every morning. She comes over to our car window, knocks on it, and then shows us what she's wearing that day (I have new Hannah Montana jeans, see?) or makes some other (one-sided) conversation, and then walks away again. One day I commented on her mom's Obama bumper sticker and, before I knew what hit me, outgoing girl had sold me 3 Obama t-shirts.
One morning she asked what we were listening to. It was one of our Disney read-aloud story tapes. "Henry," she announced, "I have a Lion King 1 1/2 read aloud that I never listen to anymore. You can have it. I'll bring it to the bus stop tomorrow. See you later." And she walked away. Henry's jaw was on the ground. "Is she going to get it?!" he asked.
That was a month ago. She has never found the tape but keeps insisting that she's looking for it. Her mom has no idea what read-aloud O.G. is talking about, so I'm not sure if they ever really had a Lion King 1 1/2 read aloud. O.G. brought us several Clifford and Arthur story tapes, but we all know that those don't compare to Disney.
Every morning as we approach the bus stop, Henry asks "Did (O.G.) bring the story tape?!" And every morning Thomas and I try to gently tell him that we doubt it.
I'm not sure why O.G. entertains me as much as she does- I think I just like seeing Henry interact with one of his peers. They have their little conversations (such as they are), and Friday he actually ran up to the bus and got on by himself for the first time EVER, chasing after O.G. and the elusive Lion King 1 1/2 read aloud. One morning O.G. reached through the window and started tickling Henry! I was ready for him to pinch her or shout something rude at her. But he just giggled, and then she walked back to her car. (!!!)
I've been glad to get to know outgoing girl's mom also. The first day that I got up my nerve to get out of the car at the bus stop and introduce myself to the other parents, I heard the whole story from her of how she and another mom had to fight our school district to get the kids bused to this school. O.G.'s mom told me that she doesn't think (new school) is perfect by any means, but that it is an improvement over what the district provides. That morning she basically told me what I wanted to hear- that I had made a good choice.The most negative thing I can say right now is that I still feel communication is lacking. Some days we get those circle the smiley face reports home. More often we don't. One day Henry told us he had left his lunchbox on the bus and his teacher had given him an apple to eat. (Of course he didn't offer up this information- I had to bring it out with my interrogation skills.) I would have thought someone might have sent me a note home about that, (or even called me to ask me to bring in another lunch) but no. I sent an e-mail that night and got a response the next day, but after that I decided to just start a new communication notebook. There was one day last week Henry woke up at like 4:45 am. I wanted to send in a note, so they would understand if he seemed extra sleepy or grumpy. So I sent in a notebook and did receive a note back.
They send home fairly challenging homework every night, and Henry tackles it with absolutely no protest. This is very different from last year, and if he is working at school with the same agreeable attitude (which I can only assume he is) that is a significant improvement.We are seeing a little more language, a growing sense of humor and, as Bill has noted, Henry seems "less stressed." When I ask about his day, Henry usually offers up whether he had art or music, and what they worked on in those classes. One night we were reading a Magic Treehouse book, and when he heard the character's name Jack, Henry piped up "just like Jack --- and Jack --- in my class!"
One silver lining I am trying to see in the lack of day-to-day communication is that it forces me to ask my son questions about his own day. Maybe he can tell me more than I think. One morning I was suggesting that he wear sneakers rather than crocs because they are safer "when you're in gym class or on the playground." "That's called recess," he corrected me.
"Right. Recess. What do you like to do at recess?"
"Mr. D is my best buddy."
"Do you hang out with Mr. D at recess?" "Yes."
"What do you guys do?" "We walk to the front desk, to see Mrs. S."
"Oh, really? Is Mr. D a teacher?" "Yes." "What class does he teach?" "He teaches in Mrs. C's class."
We have open house this week, as well as the book fair, so I will get to know all of these players a little better. I have offered to help in the classroom once a month, and hopefully they will take me up on that. (I had volunteered to help at the book fair, but they didn't need me!)
Wednesday, October 01, 2008
avenues
Henry started taking swimming lessons his first summer in the Easter Seals program- the summer of '04. We added gymnastics in the spring of '06. Summer of '07 we found riding lessons too. Of course his little brother wanted to try all those activities too, and how could we say no? Grandparents helped pay for the classes and lessons at times, but it added up.
One day this spring I got up the nerve to ask his special needs gymnastics teacher "do other families have some kind of financial aid to help pay for their classes?" "Why yes," she replied, "most of them do. Let me go grab one of the forms that I have to fill out, and I'll tell you who the agency is."
And that's how I found out about MRDD, my state's department of Mental Retardation and Developmental Disabilities. I called and they sent me some paperwork to fill out. Early in the summer Henry and I had an "intake" meeting, where they asked him a few questions to roughly gauge his ability level, and I received notice later in the summer that we were eligible for their services.
It turns out that they will pay for additional speech and occupational therapy, respite care, and bunches of other stuff that one's disabled child might need.
I am so happy to have found this agency, but also disappointed that I didn't find them sooner. Yesterday I had my initial meeting with a caseworker. He told me that he recently met with a new client whose 11-year-old child has Downs Syndrome. Why in the world, we wondered, wasn't that family told about MRDD before they left the hospital with that baby? Why isn't it someone's job to make sure that the people who need assistance find out about what's available?!
This caseworker handed me printouts about PDD-NOS and therapies for autism. Thanks. I could have used this stuff 5 years ago. We also elected to place Henry on the waiting list for a couple different kinds of funding available to disabled adults. We don't think that far into the future very often, and I like to think that Henry won't need any assistance when he is an adult. But if he does- even, say, someone to help with his laundry, these waivers will be there to help. (That's assuming, of course, that the current funding is available 9 years from now, which it probably won't be.)
It was nice to talk to someone who is familiar with the resources available to autistic children, but who also is neutral. He's not a parent who is swearing by this or that therapy. Through his experience with hundreds of families, he confirmed some things that I believe: other parents can be your best resource- talk to them and ask about what they're doing. But also, what works for one child/family may not work for another. He has known families who love the school Henry now attends*, and others who pulled their child out of the school.
As I write this, I'm a little ashamed that I should feel so affirmed by someone sitting in an office telling me to trust my gut about what's right for my child. But I guess for me, I put more stock in someone's opinion who can form judgements based upon real-life observation of the children that pass through his agency than I do a hysterical celebrity mom who demands that everyone see autism through her lens.
I'm rambling. The real point I wanted to make here was just that resources are out there, and you may not find out about them without asking questions. Never stop asking questions. A door may open up that you never knew was there.
The Easter Seals office has moved, and they no longer have a pool. The woman who gave Henry horse-riding lessons had a riding accident herself and broke her back. It would be easy to give up on those activities altogether. But Henry enjoyed those activities. They are good for him. I need to keep asking questions and look for new avenues for Henry to continue to pursue those interests.
*I am cautiously optimistic about Henry's new school. My mom reports that he participated happily in the Grandparents Day activities, and he has not argued at home one bit about doing homework- quite a change from last year. Knock on wood please.
One day this spring I got up the nerve to ask his special needs gymnastics teacher "do other families have some kind of financial aid to help pay for their classes?" "Why yes," she replied, "most of them do. Let me go grab one of the forms that I have to fill out, and I'll tell you who the agency is."
And that's how I found out about MRDD, my state's department of Mental Retardation and Developmental Disabilities. I called and they sent me some paperwork to fill out. Early in the summer Henry and I had an "intake" meeting, where they asked him a few questions to roughly gauge his ability level, and I received notice later in the summer that we were eligible for their services.
It turns out that they will pay for additional speech and occupational therapy, respite care, and bunches of other stuff that one's disabled child might need.
I am so happy to have found this agency, but also disappointed that I didn't find them sooner. Yesterday I had my initial meeting with a caseworker. He told me that he recently met with a new client whose 11-year-old child has Downs Syndrome. Why in the world, we wondered, wasn't that family told about MRDD before they left the hospital with that baby? Why isn't it someone's job to make sure that the people who need assistance find out about what's available?!
This caseworker handed me printouts about PDD-NOS and therapies for autism. Thanks. I could have used this stuff 5 years ago. We also elected to place Henry on the waiting list for a couple different kinds of funding available to disabled adults. We don't think that far into the future very often, and I like to think that Henry won't need any assistance when he is an adult. But if he does- even, say, someone to help with his laundry, these waivers will be there to help. (That's assuming, of course, that the current funding is available 9 years from now, which it probably won't be.)
It was nice to talk to someone who is familiar with the resources available to autistic children, but who also is neutral. He's not a parent who is swearing by this or that therapy. Through his experience with hundreds of families, he confirmed some things that I believe: other parents can be your best resource- talk to them and ask about what they're doing. But also, what works for one child/family may not work for another. He has known families who love the school Henry now attends*, and others who pulled their child out of the school.
As I write this, I'm a little ashamed that I should feel so affirmed by someone sitting in an office telling me to trust my gut about what's right for my child. But I guess for me, I put more stock in someone's opinion who can form judgements based upon real-life observation of the children that pass through his agency than I do a hysterical celebrity mom who demands that everyone see autism through her lens.
I'm rambling. The real point I wanted to make here was just that resources are out there, and you may not find out about them without asking questions. Never stop asking questions. A door may open up that you never knew was there.
The Easter Seals office has moved, and they no longer have a pool. The woman who gave Henry horse-riding lessons had a riding accident herself and broke her back. It would be easy to give up on those activities altogether. But Henry enjoyed those activities. They are good for him. I need to keep asking questions and look for new avenues for Henry to continue to pursue those interests.
*I am cautiously optimistic about Henry's new school. My mom reports that he participated happily in the Grandparents Day activities, and he has not argued at home one bit about doing homework- quite a change from last year. Knock on wood please.
Friday, September 19, 2008
"it's like a party here"
I wanted to write about a few fun/good things that have happened this week. And because I can't figure out how to move these videos to a different spot, I guess I will tell my stories in reverse order.
Last night we went to a professional soccer game- our first. Bill had purchased this package through Easter Seals that included 4 tickets to a baseball game (our city's minor league team), 4 tickets to a soccer game, and some kind of tickets for Magic Mountain. We never used the baseball tickets, and I doubt we'll use the Magic Mountain tickets. But I'm so glad we used these soccer tickets! The night was a resounding success!!
Henry watched the entire game with excitement. He seemed to really follow what was happening, cheering and shouting at the right times. Well, he made a lot of noise the whole time, to be honest. That's what I was trying to capture in the above videos- the way he was hopping around and making sound effects for each kick and header. It so happens, though, that both times I started recording, someone fell down (our opponents were the NY Red Bulls), he turned to announce this to me, thought I was taking his picture, and posed. I still posted both videos- I think they're cute (but I'm a bit biased).
I was just floored that the game held his interest like that. You can see that he brought some books with him, and held on to them the whole time, but he never once looked at them. It's been a couple years since Kate played sports, so maybe he has just matured, but we would always need to entertain and/or feed him at her games. I can't be sure if it's something about soccer, or the stars were just aligned properly last night.
Of course Thomas enjoyed himself. He got to meet the mascot, got a free little soccer ball that they threw into the stands, and daddy took him all the way to the top of the stadium when he started getting antsy.
I probably had the least fun of all of us- only because I was freezing my behind off. As soon as the sun went down and the breeze picked up, I was cold. My teeth were chattering as we walked to the car! But no one else was cold. That tells you how much fun they were having! If I hadn't hustled us out of there, we probably could have stayed to get players' autographs and stuff. We'll have to go another time!
The other story I wanted to tell is from last Saturday (the day before the storm). I was having Henry work on his "all about me" poster for school, and of course Thomas wanted to create his own "all about me" poster. (Note to self- always prepare for 2.)
I put on a group of Paul Simon cCDs, set to shuffle, and we worked for awhile. Then Henry moved on to a puzzle, while Tommy continued working carefully on his poster.
At one point I came in to the room, heard The Obvious Child, and started dancing around a little. (I defy you to hear that song and NOT dance.)
Tommy looked around and said "it's like a party here right now."
He elaborated: "One kid drinking water, one big kid doing a puzzle, and a mom dancing. That's a party."
Then he added: "And my new friend is my brother."
A party indeed. Does it get any better?
Monday, September 15, 2008
Ike reaches Ohio
I'm sure this post will induce eye-rolls from anyone living in Florida, the Carolina coasts, Texas, Louisiana...
But around these parts, we've never seen wind like this.
Sunday morning's weather report warned of a high wind advisory for the afternoon. And the winds rolled in around 3 maybe. We had just returned from our trip to the library, and Henry was settling in with a DVD he had borrowed.
A small branch fell from our tree, and the little tykes basketball hoop blew over. The strange thing was that there was no rain accompanying the wind, so we kept going outside to check things out. ("These are sure some high winds!") I was all geeked out about all the pinecones that had fallen in the backyard, and Tommy and I were heading out to collect them, when Bill said "I don't like the way those trees are swaying. I think it's dangerous for you guys to be outside." I rolled my eyes and we came in.
30 seconds later we heard a thump, and looked out the back window to see this:
That's when the power went out. Poor Henry just cannot deal when the electricity is out. Never mind that he normally spends lots of time doing puzzles or reading books. Those activities just will not pacify him when he has a movie he wants to watch.
Tommy, on the other hand, thought the whole thing was a great adventure.
I don't think that Bill and I conveyed too much worry, but Henry was so anxious about the electricity situation. He must have asked every 30 seconds are they coming to fix the tree that fell? Once I ran a quick errand up to the main street, and saw that trees and branches were down all over town, I knew that they wouldn't be fixing our problem too quickly.
A large branch came down from another neighbor's tree:
Every yard in our county looked like this or worse:
Yesterday and today all the schools are closed, as are many businesses. 330,000 people were without power yesterday and they are estimating that some may have to wait up to a week to have it restored. Many of the electric company employees had been sent down to Texas to help out, and are having to be called back.
Our power came back on yesterday afternoon, so we are lucky. I am laying low this morning, though, because yesterday I ran around like a chicken with my head cut off.
(Our house did sustain some damage to the siding. Looks like it used to be painted yellow.)
But around these parts, we've never seen wind like this.
Sunday morning's weather report warned of a high wind advisory for the afternoon. And the winds rolled in around 3 maybe. We had just returned from our trip to the library, and Henry was settling in with a DVD he had borrowed.
A small branch fell from our tree, and the little tykes basketball hoop blew over. The strange thing was that there was no rain accompanying the wind, so we kept going outside to check things out. ("These are sure some high winds!") I was all geeked out about all the pinecones that had fallen in the backyard, and Tommy and I were heading out to collect them, when Bill said "I don't like the way those trees are swaying. I think it's dangerous for you guys to be outside." I rolled my eyes and we came in.
30 seconds later we heard a thump, and looked out the back window to see this:
That's when the power went out. Poor Henry just cannot deal when the electricity is out. Never mind that he normally spends lots of time doing puzzles or reading books. Those activities just will not pacify him when he has a movie he wants to watch.Tommy, on the other hand, thought the whole thing was a great adventure.
I don't think that Bill and I conveyed too much worry, but Henry was so anxious about the electricity situation. He must have asked every 30 seconds are they coming to fix the tree that fell? Once I ran a quick errand up to the main street, and saw that trees and branches were down all over town, I knew that they wouldn't be fixing our problem too quickly.
A large branch came down from another neighbor's tree:
Every yard in our county looked like this or worse:
Yesterday and today all the schools are closed, as are many businesses. 330,000 people were without power yesterday and they are estimating that some may have to wait up to a week to have it restored. Many of the electric company employees had been sent down to Texas to help out, and are having to be called back.
Our power came back on yesterday afternoon, so we are lucky. I am laying low this morning, though, because yesterday I ran around like a chicken with my head cut off.
Despite listening to the news, I didn't fully grasp the scope of the situation. We had no electricity, no phone (our battery backup had run out), and cell phone service was very spotty. I text messaged the kids' sitter, and she had no power either. The university I work for was not closed, so I assumed that they had power. I packed the kids up, grabbed some movies they could watch while I worked, and off we went.
We'll stop on the way to get some breakfast! I promised.
(Our house did sustain some damage to the siding. Looks like it used to be painted yellow.)
So, let's think this through together. 329,999 other people cannot make breakfast at their homes either. How crowded do you think the restaurants that ARE open are going to be? That's right- pretty damn crowded. Unfortunately, Henry and Thomas' mom did not think that through, and instead drove to Starbucks (line out the door), Tim Hortons (line out into the street), McDonalds (line out into the street stopping traffic), etc. etc.
Add in a couple other stops to places that turned out to be closed, and all the intersections that had to be treated like 4-way stops because the lights weren't working, 2 whiny kids saying "but you said we would get something to eat! I'm huuunnnggryy!" And you've got me losing my mind.
We finally found a grocery store that was open, went in and bought cookies, donuts, coffee cake and croissants!!! Henry also picked up a pack of cherry tomatoes. All the refrigerated areas were covered with sheets of plastic, so I couldn't buy any yogurt or Henry's beloved sausage links.
It's just as well, because when we finally got to my office, the power was out there too. We stayed for a few hours, which I finally realized was silly, and we came back home.
I like to think that I am a pretty rational, calm person. But this was a scary experience. If my power were really out for 7 days and there were no grocery stores, restaurants, or gas stations in operation?? What about parents of infants who need to buy and heat formula? Mother nature lets us think that we're in charge most of the time, and then gives us a little slap upside the head to remind us who's boss.
Monday, September 08, 2008
Henry's teacher e-mailed me back that same afternoon. She said I should feel free to contact her anytime, and explained that they'll also be sending home this form to report on Henry's day:
I did a double-take, but then said, "well, that's true. He's not as good at some things as you are. Some things, like coloring, are just harder for him, and that's because he's autistic." Well that was easier than I thought. Now Henry's younger brother understands his disability.
I know it's not really that simple, but then again, it is. To Tommy, Henry is Henry and Henry is also "autism", so Tommy knows about autism. I hope he will someday understand the kid next to him just a little bit better, like our friend Brian does. (Brian's mom's blog is private, so I can't link to it.)
This week Tommy started fall soccer, and also goes back to preschool. He is now one of the bigger kids in both settings, and although he was worried, as always, about being shy, he really wasn't shy at all. He's growing up.
__________
And just when I think I might be getting a grip on things, I'm really not. Henry had his 9-year checkup yesterday, and daddy took him. (Henry's doing fine. 15th percentile as always :-) Then today I realized I needed to get Thomas' medical form signed before he starts preschool. Oh, how dumb am I? I should have sent it along with them yesterday.
I faxed it over, only to have the doctor's office call and tell me that Thomas' last checkup was in February of '07. His 3-year checkup. I never took him for a 4-year checkup. Hello, youngest child, welcome to neglect.
So I need to hurry up and get him in for a checkup tomorrow so that he can go to preschool. 2 well-child visits to the doctor's office in one week. Not the most efficient way to operate, but it's all we've got.
Just keep swimming, just keep swimming.
It looked like she circled the faces on this one, but subsequent forms have been self-evaluations by Henry, and all has been smiley faces.
She also said Henry is a joy to have in class. Well, duh. You can save all that teacher-y sunshine-y stuff for another mom, Miss C. Has he pinched anybody yet? I guess, on that front, no news will just be good news.
Friday evening Henry actually said "I'm going to miss my school. I'm going to miss my teachers." (!!!) I'm not going to put too much stock into that, as I think he was just plugging something in to his "I'm going to miss..." repetition. But it was still nice to hear.
______
Thomas has been quite into coloring lately. For the past month or so he colors in the morning, colors in the evening, brings coloring books in the car... It's nice to see our huge collection of coloring books actually getting colored in. (Henry just likes to look at them.) I worry slightly when Tommy cries about something not being quite right- like he colored outside the lines, but he doesn't seem to be overly compulsive about it most of the time.
I did a double-take, but then said, "well, that's true. He's not as good at some things as you are. Some things, like coloring, are just harder for him, and that's because he's autistic." Well that was easier than I thought. Now Henry's younger brother understands his disability.
I know it's not really that simple, but then again, it is. To Tommy, Henry is Henry and Henry is also "autism", so Tommy knows about autism. I hope he will someday understand the kid next to him just a little bit better, like our friend Brian does. (Brian's mom's blog is private, so I can't link to it.)
This week Tommy started fall soccer, and also goes back to preschool. He is now one of the bigger kids in both settings, and although he was worried, as always, about being shy, he really wasn't shy at all. He's growing up.
__________
And just when I think I might be getting a grip on things, I'm really not. Henry had his 9-year checkup yesterday, and daddy took him. (Henry's doing fine. 15th percentile as always :-) Then today I realized I needed to get Thomas' medical form signed before he starts preschool. Oh, how dumb am I? I should have sent it along with them yesterday.
I faxed it over, only to have the doctor's office call and tell me that Thomas' last checkup was in February of '07. His 3-year checkup. I never took him for a 4-year checkup. Hello, youngest child, welcome to neglect.
So I need to hurry up and get him in for a checkup tomorrow so that he can go to preschool. 2 well-child visits to the doctor's office in one week. Not the most efficient way to operate, but it's all we've got.
Just keep swimming, just keep swimming.
Wednesday, September 03, 2008
why I e-mailed Henry's teacher today
Because when I try to ask Henry a (to me) simple question about his day, here's what I get:
G: Henry, did you eat the Spongebob Cheez-Its I packed in your lunch today? (Always hoping to stumble upon something new that he will eat.)
H: I didn't eat them.
G: Oh, well, where are they then? Did you throw them away?
H: No.
G: What happened to them?
H: Mr. J took them.
G: Mr. J took your Spongebob Cheez-Its? Did he trade you for something else?
H: Yes.
G: What did he trade you?
H: The Spongebob Cheez-Its.
(Bill laughs from the other room and then takes a stab at it): What did Mr. J give you to trade for your Spongebob Cheez-Its?
H: Nothing.
G: So what happened to your Spongebob Cheez-Its?
H: I threw them away.
_______________
Not that I need a note home every day about whether he ate his lunch or not, but I would just like a summary of the school day that has not been passed through the Henry translation screen.
He did tell us about art class yesterday. They drew lines: "jagged lines were mountains, wavey lines were water, swirly lines were clouds" (he worked on the word swirly for a bit).
And he showed us an injury on the palm of his hand: "I was so excited to get my cupcakes! But I fell." It sounds like he slipped and fell to the floor while hurrying over to get his birthday treat to share. Can you stand it?
G: Henry, did you eat the Spongebob Cheez-Its I packed in your lunch today? (Always hoping to stumble upon something new that he will eat.)
H: I didn't eat them.
G: Oh, well, where are they then? Did you throw them away?
H: No.
G: What happened to them?
H: Mr. J took them.
G: Mr. J took your Spongebob Cheez-Its? Did he trade you for something else?
H: Yes.
G: What did he trade you?
H: The Spongebob Cheez-Its.
(Bill laughs from the other room and then takes a stab at it): What did Mr. J give you to trade for your Spongebob Cheez-Its?
H: Nothing.
G: So what happened to your Spongebob Cheez-Its?
H: I threw them away.
_______________
Not that I need a note home every day about whether he ate his lunch or not, but I would just like a summary of the school day that has not been passed through the Henry translation screen.
He did tell us about art class yesterday. They drew lines: "jagged lines were mountains, wavey lines were water, swirly lines were clouds" (he worked on the word swirly for a bit).
And he showed us an injury on the palm of his hand: "I was so excited to get my cupcakes! But I fell." It sounds like he slipped and fell to the floor while hurrying over to get his birthday treat to share. Can you stand it?
Tuesday, September 02, 2008
all-around, a satisfying weekend
A new puzzle--
An uncle who is ready and willing to play with all his cool old toys--
A Grandpa who takes you on adventures, like checking out the attic--
Happy birthday Henry! Thanks for making me your mom 9 years ago.
An uncle who is ready and willing to play with all his cool old toys--
A Grandpa who takes you on adventures, like checking out the attic--
(Perhaps this photo is blurry because mommy was so nervous. Even more so when she heard Grandpa instruct "now stay on the wood beams- don't step on the white part. It won't hold you.")
Temporary tattoos and a slip-n-slide--
Wearing no shirt all day long on your birthday, sitting outside eating watermelon, looking at the cool comic book your uncle gave you--
Covering your ears and blowing out the candles--
And she's not pictured, but the big sister joined us for the celebration. Tommy and I took her home and I saw her apartment for the first time. I was left with mixed emotions: a little bit excited for her; I remember how it felt to go out on my own, a little bit sad to leave her there alone.
I know that's weird as she hasn't lived with us for months now. I guess old mommy habits die hard.
Temporary tattoos and a slip-n-slide--
Wearing no shirt all day long on your birthday, sitting outside eating watermelon, looking at the cool comic book your uncle gave you--
Covering your ears and blowing out the candles-- 
And she's not pictured, but the big sister joined us for the celebration. Tommy and I took her home and I saw her apartment for the first time. I was left with mixed emotions: a little bit excited for her; I remember how it felt to go out on my own, a little bit sad to leave her there alone. I know that's weird as she hasn't lived with us for months now. I guess old mommy habits die hard.
Happy birthday Henry! Thanks for making me your mom 9 years ago.
Tuesday, August 26, 2008
Well, since I seem to have conveyed all my anxiety well enough to pass it on to everyone else, I feel like I should write a quick post to say that the first two days have seemed to go ok. It's hard to really evaluate, since all my information is coming from this young man of little words. He was already deep into a Disney movie by the time I got home Monday (The Sword in the Stone), and wasn't really psyched about telling me about his day.
I mostly asked him a lot of poorly-constructed questions, so that he just kept answering "yes". (Did you eat your lunch in the cafeteria? Did your teacher eat with you?) When I asked about recess, he responded "I didn't go down the slide." I can only infer that someone wanted him to go down the slide, but he refused. Or he actually did go down the slide, but doesn't want to talk to me about it...
He brought home a "madlib" worksheet he had done at school. Each page had an incomplete sentence- he had to cut out a word to fit in the blank, such as "I come to school in a ____" and he had cut and glued the word and picture for "bus". One page read "My teacher is a real ____." Henry had filled in the blank with "sweetheart". I asked him what some of the other choices were. He looked up at me with an impish smile and said "monster"! So I'm glad he didn't choose that response.
I wrote a note to his teachers yesterday, asking for guidance on Henry's birthday treat next week. They don't do daily communication notebooks at this school. But maybe I'll just force my own by writing them a note every day.
Yesterday evening, when I asked about school, he said "I went to art!" Henry's never been much into art- too challenging to his fine motor skills- so I was happy to hear his excitement. I asked what they did in art and he said "I made a dragonfly!"
This morning he started saying that he didn't want to go to (the new school), he wanted to go back to (the old school). I told him that I know it's hard to start something new and that it would take some time to get used to (the new school). I decided not to push it, and declared that by Halloween he would really like his new school. (Hopefully it happens before then, but I thought that time frame might give him the idea that it would be soon, but not right away.)
Thank you everyone for your support, and I'm sorry for all the nervousness spilling all over the place. As you know, the new school decision has been a stressful one. Of course all parents worry about their children. But our autistic children ratchet that up a level or two. It was very comfortable to have Henry at L's house this summer- a comfortable safe zone where he could also spend time with his brother. But I was caught offguard a couple different times when I realized that L couldn't understand things Henry was saying to her. She has known him his whole life, and spent the most time with him of anyone, outside our immediate home. She loves him like he's her own child. And she still doesn't know what he's telling her half the time. Really eye-opening. And really frightening, if you think about it too much: there are only 4 people in this world who understand everything Henry says.
How am I supposed to send him out in the world, knowing that?
It doesn't help that I've been reading a lot of news stories that I shouldn't. I read about bad things that happen to children, as if I think that reading about them will prevent them from happening to my kids. And then the details get stuck in my head and shake loose in the middle of the night.
This cloud will blow past- don't worry. By the time we get through this fun-filled long weekend and celebrate Henry's 9th birthday Monday, I will be all sunshine and daisies again.
Just keep swimming, just keep swimming... maybe we should all get Dory tattoos (or t-shirts, for the needle-phobes.)
I mostly asked him a lot of poorly-constructed questions, so that he just kept answering "yes". (Did you eat your lunch in the cafeteria? Did your teacher eat with you?) When I asked about recess, he responded "I didn't go down the slide." I can only infer that someone wanted him to go down the slide, but he refused. Or he actually did go down the slide, but doesn't want to talk to me about it...
He brought home a "madlib" worksheet he had done at school. Each page had an incomplete sentence- he had to cut out a word to fit in the blank, such as "I come to school in a ____" and he had cut and glued the word and picture for "bus". One page read "My teacher is a real ____." Henry had filled in the blank with "sweetheart". I asked him what some of the other choices were. He looked up at me with an impish smile and said "monster"! So I'm glad he didn't choose that response.
I wrote a note to his teachers yesterday, asking for guidance on Henry's birthday treat next week. They don't do daily communication notebooks at this school. But maybe I'll just force my own by writing them a note every day.
Yesterday evening, when I asked about school, he said "I went to art!" Henry's never been much into art- too challenging to his fine motor skills- so I was happy to hear his excitement. I asked what they did in art and he said "I made a dragonfly!"
This morning he started saying that he didn't want to go to (the new school), he wanted to go back to (the old school). I told him that I know it's hard to start something new and that it would take some time to get used to (the new school). I decided not to push it, and declared that by Halloween he would really like his new school. (Hopefully it happens before then, but I thought that time frame might give him the idea that it would be soon, but not right away.)
Thank you everyone for your support, and I'm sorry for all the nervousness spilling all over the place. As you know, the new school decision has been a stressful one. Of course all parents worry about their children. But our autistic children ratchet that up a level or two. It was very comfortable to have Henry at L's house this summer- a comfortable safe zone where he could also spend time with his brother. But I was caught offguard a couple different times when I realized that L couldn't understand things Henry was saying to her. She has known him his whole life, and spent the most time with him of anyone, outside our immediate home. She loves him like he's her own child. And she still doesn't know what he's telling her half the time. Really eye-opening. And really frightening, if you think about it too much: there are only 4 people in this world who understand everything Henry says.
How am I supposed to send him out in the world, knowing that?
It doesn't help that I've been reading a lot of news stories that I shouldn't. I read about bad things that happen to children, as if I think that reading about them will prevent them from happening to my kids. And then the details get stuck in my head and shake loose in the middle of the night.
This cloud will blow past- don't worry. By the time we get through this fun-filled long weekend and celebrate Henry's 9th birthday Monday, I will be all sunshine and daisies again.
Just keep swimming, just keep swimming... maybe we should all get Dory tattoos (or t-shirts, for the needle-phobes.)
Monday, August 25, 2008
the circle of life
Could I be any more cliche than this? Henry watched The Lion King a couple times this weekend and took 2 different Lion King books with him to his first day at the new school, so I just can't avoid using the circle of life phrase.Henry has been feeling a lot of anxiety about this change to a different school. But the good news is that he's been expressing that verbally without too much other acting out. This morning he told me he didn't feel too well. And that he was nervous about going to a new school.
Of course I understand how he feels. How nervous do any of us feel when we start something new? He's not quite 9 years old and loves his routine- gulp. I can't let myself get too far inside his head or I'll be trying to smuggle him in to work with me and "office-school" him to never let him out of my sight!
So I tried very hard to remember that a mom's job is to say "I understand how you feel. It's normal to be worried about something new. But you'll be fine. Everything will be great. I think you'll love your new school!"
I remembered that a new infant was starting today at L's house, and I thought about how his parents must feel- leaving their baby for the first time.
I told Henry to think about how scared that baby might feel, but that we knew he would have so much fun at L's house and soon he would love it there.
There was a little mix-up with the bus, so we had some extra time to snap photos while waiting. It finally arrived, although it stopped about half a block from where I had been told...
Henry sat down across from a chatty 5th-grade girl. She introduced herself and asked us our names. Henry pointed to her Camp Rock binder and said "Camp Rock".
"I have a Camp Rock binder, Camp Rock notebook, Camp Rock folders, and Camp Rock pencils", she replied.
"Wow" I said.
"I'm a big fan" she explained. Then she offered to help Henry find his classroom.
This feels as hard as every other first.
Wednesday, August 20, 2008
you are the consequence!
Let's just all put our heads down and try to make it through the next few weeks, ok? It seems like families all over the blogosphere are worried about the new school year starting, and over here is no exception. Henry's been talking a lot about missing his old school, missing L when he goes back to school, missing me and daddy, missing Kate.
This is one of his ways of expressing his anxiety. I don't know that he will actually miss any of these things, but it's a phrase he's found that conveys hey, I need some comforting. In reading back through some of my early posts, I remember that he used to miss things much more regularly. And back then he had all his pronouns backwards. So we have traveled from that point to this: where we have just occasional anxiety, with the correct pronouns. But the worry for the mom feels the same.
And the worry spills over to Thomas. He is not starting school yet- has one more safe year at L's house before the big changes start. But a couple of his buddies from L's are going on to kindergarten, and she is taking in 2 new infants. Tommy will be the big boy that the little ones emulate. Time marches on and on.
In a lighter vein, here is how my sons looked when we left the house this morning.
Longtime readers may remember that Thomas used to be positively traumatized when required to wear long pants in the winter. Well, all of a sudden, the past few weeks, he has been digging through drawers to find long pants and long-sleeved shirts to wear. And a long-sleeved shirt with a short-sleeved over it is even better. He thought he looked totally fashion today- down to the sunglasses.
For his part, Henry has taken to sleeping with no shirt (I guess he learned that from Daddy). He often sleeps in boxer shorts and then requests to just wear those for his underwear that day. Well, today he said "I want to keep my jammie pants on under my shorts." Only he was wearing long pants this time. Don't worry, I brought proper changes of clothes for both of them, in case L takes them out in public today.
Yesterday was a rough one for both boys. I was just thinking that we had almost made it through the summer without incident (remember Thomas' black eye last August?), but no such luck. L called yesterday to tell me that Tommy had been stung 4 times (by a wasp or hornet, we think, as bees can only sting once) on the back of his knee! Of course I had a heart attack, worrying that he would be allergic, but he was perfectly fine after she put some baking soda paste on the stings.
Henry's pain yesterday was of a different sort: the sting of shame, perhaps. At our last visit to the library (Monday), I borrowed an X-Men "junior novel"- a chapter book with no pictures except for a few pages in the center, with photos from the movie. Although Henry is a very good reader, he prefers large storybook-type books with lots of pictures. I was hoping to force his comfort zone by having him read this chapter book.
When I called him up for a bath Tuesday night, he had, clutched in his hands, the photo pages from the library book. Torn right out. I couldn't believe it. Henry has never ever damaged a book- library or otherwise. I guess I took it for granted that he understood that you aren't supposed to damage books. But maybe he just was never motivated to do so before.
Heavy sigh. So when I picked him up yesterday, I told him that we were going to go back to the library, return the damaged book, and tell the librarian he was sorry. Henry did not like this plan at all. He argued a bit and said he didn't want to go. I replied by saying that this was the consequence for damaging the library book.
He came over, pushed me right about my rib cage, and said "you are the consequence!"
You almost feel sorry for the kid because you can tell he wants to really tell me off, but he just doesn't have the language. He did a lot of crossing his arms, planting his feet, and saying "hmph!" on the way to talk to the librarian. He looked like he was going to cry and only managed a "sorry", while looking down. But that was enough. I feel like the point was made- I hope he learned a lesson. (Oh, and the librarians are super-nice and know him and I had called beforehand and talked to them, so they were very kind to Henry.)
The book only cost $5, so I am going to make him do a few jobs to earn the money. (In fact, I bribed him to pose for the photo above by telling him he could earn $1. Note his unhappy face.) On the way out of the library I stopped to give Henry a hug and asked if he felt embarrassed. He said yes. It's so hard to help him understand his emotions without putting words in his mouth. Oh, he also attempted to convey his anger toward me by declaring "you are not my mom!" I just brushed that off and said "of course I am." Luckiest mom in the world, even on a day like this!
This is one of his ways of expressing his anxiety. I don't know that he will actually miss any of these things, but it's a phrase he's found that conveys hey, I need some comforting. In reading back through some of my early posts, I remember that he used to miss things much more regularly. And back then he had all his pronouns backwards. So we have traveled from that point to this: where we have just occasional anxiety, with the correct pronouns. But the worry for the mom feels the same.
And the worry spills over to Thomas. He is not starting school yet- has one more safe year at L's house before the big changes start. But a couple of his buddies from L's are going on to kindergarten, and she is taking in 2 new infants. Tommy will be the big boy that the little ones emulate. Time marches on and on.
In a lighter vein, here is how my sons looked when we left the house this morning.Longtime readers may remember that Thomas used to be positively traumatized when required to wear long pants in the winter. Well, all of a sudden, the past few weeks, he has been digging through drawers to find long pants and long-sleeved shirts to wear. And a long-sleeved shirt with a short-sleeved over it is even better. He thought he looked totally fashion today- down to the sunglasses.
For his part, Henry has taken to sleeping with no shirt (I guess he learned that from Daddy). He often sleeps in boxer shorts and then requests to just wear those for his underwear that day. Well, today he said "I want to keep my jammie pants on under my shorts." Only he was wearing long pants this time. Don't worry, I brought proper changes of clothes for both of them, in case L takes them out in public today.
Yesterday was a rough one for both boys. I was just thinking that we had almost made it through the summer without incident (remember Thomas' black eye last August?), but no such luck. L called yesterday to tell me that Tommy had been stung 4 times (by a wasp or hornet, we think, as bees can only sting once) on the back of his knee! Of course I had a heart attack, worrying that he would be allergic, but he was perfectly fine after she put some baking soda paste on the stings.
Henry's pain yesterday was of a different sort: the sting of shame, perhaps. At our last visit to the library (Monday), I borrowed an X-Men "junior novel"- a chapter book with no pictures except for a few pages in the center, with photos from the movie. Although Henry is a very good reader, he prefers large storybook-type books with lots of pictures. I was hoping to force his comfort zone by having him read this chapter book.
When I called him up for a bath Tuesday night, he had, clutched in his hands, the photo pages from the library book. Torn right out. I couldn't believe it. Henry has never ever damaged a book- library or otherwise. I guess I took it for granted that he understood that you aren't supposed to damage books. But maybe he just was never motivated to do so before.
Heavy sigh. So when I picked him up yesterday, I told him that we were going to go back to the library, return the damaged book, and tell the librarian he was sorry. Henry did not like this plan at all. He argued a bit and said he didn't want to go. I replied by saying that this was the consequence for damaging the library book.
He came over, pushed me right about my rib cage, and said "you are the consequence!"
You almost feel sorry for the kid because you can tell he wants to really tell me off, but he just doesn't have the language. He did a lot of crossing his arms, planting his feet, and saying "hmph!" on the way to talk to the librarian. He looked like he was going to cry and only managed a "sorry", while looking down. But that was enough. I feel like the point was made- I hope he learned a lesson. (Oh, and the librarians are super-nice and know him and I had called beforehand and talked to them, so they were very kind to Henry.)
The book only cost $5, so I am going to make him do a few jobs to earn the money. (In fact, I bribed him to pose for the photo above by telling him he could earn $1. Note his unhappy face.) On the way out of the library I stopped to give Henry a hug and asked if he felt embarrassed. He said yes. It's so hard to help him understand his emotions without putting words in his mouth. Oh, he also attempted to convey his anger toward me by declaring "you are not my mom!" I just brushed that off and said "of course I am." Luckiest mom in the world, even on a day like this!
Tuesday, August 19, 2008
autism resource
I received an e-mail from Easter Seals today with an interesting link:
Information on Autism Services in Your State Now Available
Easter Seals and the Autism Society of America have prepared a state-of-the-state report of autism services in the 50 states, the District of Columbia and Puerto Rico. The profiles highlight the number of children with autism, private health insurance coverage for autism, and other state-led resources. This information will be regularly updated throughout the year.
View your state's autism profile at http://www.easterseals.com/autismprofiles.
This information may already be out there, but I've personally never found such a simple resource to see even information about my own state, much less the rest of the country...
Information on Autism Services in Your State Now Available
Easter Seals and the Autism Society of America have prepared a state-of-the-state report of autism services in the 50 states, the District of Columbia and Puerto Rico. The profiles highlight the number of children with autism, private health insurance coverage for autism, and other state-led resources. This information will be regularly updated throughout the year.
View your state's autism profile at http://www.easterseals.com/autismprofiles.
This information may already be out there, but I've personally never found such a simple resource to see even information about my own state, much less the rest of the country...
Thursday, August 14, 2008
Tonight we have "meet-the-teacher night" at Henry's new school. Now, before you get all excited and think that I kicked some school district butt to get him in, let me explain.
It turns out that, if you can't get your school district to agree to send your child to the private school, (I couldn't, not without calling an IEP meeting which couldn't be done until after school had already started) you can send him to the "community school" (called charter schools in most other states) arm of the same school. (If there is a community school slot available, and if the spot is offered to you.) You withdraw your child from the district of residence and enroll him in the community school.
Holy shit, this stuff is unclear. One person tells you one thing and the next person doesn't know anything about that, and you send an e-mail and leave 15 messages and wait a week to figure out what to do next. I feel like I've been through the wringer.
It doesn't help that my husband is still not drinking that kool-aid, while I'm guzzling it by the gallon. At least he's willing to give it a shot, seeing as I'm so flipping sure about this.
I'll agree with him that the place has a bit of a cult-like feel to it. Everyone is so friendly and smiling and talks in such soothing tones. But I like to think that that's because they work with autistic kids all day, and friendly, smiling and soothing are good ways to be in that environment--not because they're trying to brainwash us.
Our school district's refusal to agree to place Henry here just reinforces my feeling that they don't really care about my child. And their argument that mainstreaming in the public school prepares my child for the "real world" he will someday work and live in holds no merit with me. You know what will prepare my child for the future? Being in a safe, nurturing, understanding, respectful environment that works on his weaknesses and works with his strengths to give him an excellent education.
The "real world" can be a pretty shitty place, and I don't see any other parents going out of their way to prepare their kids for that. Why should I be expected to?
I think Bill summed it up pretty well with this analogy: a couple summers ago Henry played t-ball through our city's parks & rec dept. We told them up front that he had autism, and they were quite willing to work with him and include him. And it was fine- it was a decent experience. But then this summer we found the Miracle League. They did more than just let my kid play. The team was made for kids like him, and parents like us, and it was more than we could have hoped for. This is my hope for our new school.
I've realized that part of this is selfish. I went to a parent orientation meeting the other night, and had the most unusual feeling as I pulled into the parking lot full of cars with autism ribbons on their bumpers. The feeling grew as I looked around the room and saw parents nodding and smiling at the school founders who were speaking. I think this feeling that I'm not so used to is belonging. As Drama Mama would say, these are our people.
Just as my son will no longer be relegated to a room at the end of the hall, I will no longer be relegated to the edges of the parental realm. I would not have participated in the PTO at his old school, because he didn't really participate in the school's activities. This new school requires a lot more parental involvement, and I think that will be good for me- for all of us.
I was telling a friend about the baseball analogy- a friend who's son is 10 and plays select-league baseball. I said "yeah, maybe Miracle League isn't 'real world' baseball, but I don't care." She interrupted me and said "Or maybe Miracle League baseball is 'real world' baseball. Just as much as our league is. It's about giving everyone a chance to play."
It turns out that, if you can't get your school district to agree to send your child to the private school, (I couldn't, not without calling an IEP meeting which couldn't be done until after school had already started) you can send him to the "community school" (called charter schools in most other states) arm of the same school. (If there is a community school slot available, and if the spot is offered to you.) You withdraw your child from the district of residence and enroll him in the community school.
Holy shit, this stuff is unclear. One person tells you one thing and the next person doesn't know anything about that, and you send an e-mail and leave 15 messages and wait a week to figure out what to do next. I feel like I've been through the wringer.
It doesn't help that my husband is still not drinking that kool-aid, while I'm guzzling it by the gallon. At least he's willing to give it a shot, seeing as I'm so flipping sure about this.
I'll agree with him that the place has a bit of a cult-like feel to it. Everyone is so friendly and smiling and talks in such soothing tones. But I like to think that that's because they work with autistic kids all day, and friendly, smiling and soothing are good ways to be in that environment--not because they're trying to brainwash us.
Our school district's refusal to agree to place Henry here just reinforces my feeling that they don't really care about my child. And their argument that mainstreaming in the public school prepares my child for the "real world" he will someday work and live in holds no merit with me. You know what will prepare my child for the future? Being in a safe, nurturing, understanding, respectful environment that works on his weaknesses and works with his strengths to give him an excellent education.
The "real world" can be a pretty shitty place, and I don't see any other parents going out of their way to prepare their kids for that. Why should I be expected to?
I think Bill summed it up pretty well with this analogy: a couple summers ago Henry played t-ball through our city's parks & rec dept. We told them up front that he had autism, and they were quite willing to work with him and include him. And it was fine- it was a decent experience. But then this summer we found the Miracle League. They did more than just let my kid play. The team was made for kids like him, and parents like us, and it was more than we could have hoped for. This is my hope for our new school.
I've realized that part of this is selfish. I went to a parent orientation meeting the other night, and had the most unusual feeling as I pulled into the parking lot full of cars with autism ribbons on their bumpers. The feeling grew as I looked around the room and saw parents nodding and smiling at the school founders who were speaking. I think this feeling that I'm not so used to is belonging. As Drama Mama would say, these are our people.
Just as my son will no longer be relegated to a room at the end of the hall, I will no longer be relegated to the edges of the parental realm. I would not have participated in the PTO at his old school, because he didn't really participate in the school's activities. This new school requires a lot more parental involvement, and I think that will be good for me- for all of us.
I was telling a friend about the baseball analogy- a friend who's son is 10 and plays select-league baseball. I said "yeah, maybe Miracle League isn't 'real world' baseball, but I don't care." She interrupted me and said "Or maybe Miracle League baseball is 'real world' baseball. Just as much as our league is. It's about giving everyone a chance to play."
Thursday, August 07, 2008
issues
I would really rather not give everyone the impression that I'm totally neurotic and frantic about my children leaving me at any moment. I kind of thought that I was over that stuff I wrote about in the last post. But then this morning I had a bad dream:
Tommy was leaving. Going somewhere on his own. I'm not clear on the exact circumstances- if Bill and I were divorced and the boy was going off to visit his dad, or maybe he was just going off on a trip by himself. But he was standing out on a street corner in his yellow crocs and blue spiderman t-shirt- not any older or bigger than he is now- waiting for a taxi to pick him up.
I was watching him through a window, trying to be cool, but then just lost it and ran out to him, crying, and begged him to come back home and stay with me for awhile. I was on my knees, hugging him and sobbing, and he was like "ummm, I don't know mommy. Actually, I think I'll go."
Is that messed up or what? I am getting all choked up again, just thinking about it.
It's going to be a long 14 more years for this kid, what with trying to live his life while his mom drags along behind him, holding on to his ankles.
Tommy was leaving. Going somewhere on his own. I'm not clear on the exact circumstances- if Bill and I were divorced and the boy was going off to visit his dad, or maybe he was just going off on a trip by himself. But he was standing out on a street corner in his yellow crocs and blue spiderman t-shirt- not any older or bigger than he is now- waiting for a taxi to pick him up.
I was watching him through a window, trying to be cool, but then just lost it and ran out to him, crying, and begged him to come back home and stay with me for awhile. I was on my knees, hugging him and sobbing, and he was like "ummm, I don't know mommy. Actually, I think I'll go."
Is that messed up or what? I am getting all choked up again, just thinking about it.
It's going to be a long 14 more years for this kid, what with trying to live his life while his mom drags along behind him, holding on to his ankles.
Saturday, August 02, 2008
step out of it mommy (Tommization of "snap out of it")
Last night, driving home after work, I guess I was slipping into a little melancholy. I was thinking about all the ways our children leave us. Some leave because it's time, and some leave before it's time. But most of them do leave.
I've been reading and re-reading posts on the blogs linked above all week. And I wonder why I, a person who eschews watching any sad movie or reading any sad book, seems to want to torment myself with these stories?
So I was pondering these things and maybe getting a little long-in-the-face, when I heard a little voice from the backseat:
"...his son, Chico..."
"...his son, Fabio..."
"...love a duck!"
"LOVE A DUCK!"
My sons were throwing out all my favorite funny lines from Finding Nemo. Were they trying to cheer me up? To tell me to appreciate what I have in my own back seat? I think so. It worked.
Thursday, July 31, 2008
update on the school situation
I am totally drinking the kool-aid on this new school. My husband, not-so-much. And that's good- one more example why it's good to have 2 parents to help make these decisions.
Like, on our tour, when she mentioned that they have early dismissal every Friday? I heard that, but kind of filed it in the back of my mind- we'll figure that out somehow. But Bill was like "what would we do about the Fridays? What if the school district won't pay for it and, even with the Autism Scholarship that our state offers, we still have to pay $8000 a year out-of-pocket?"
Autism moms out there- are you sitting down? Because this will surely shock you: it looks like we will have to fight a little to convince the school district that this is the best thing for Henry. I broached the subject in an e-mail, and the Director of Special Ed wrote back saying (to paraphrase) Henry has made great progress here and I think he will continue to do the same in this community setting where he can spend lots of time in the general ed classroom and remain close to home and can go to school with his brother...
The first time I read the e-mail I was just pissed- she's saying no. A few hours later, I read it again and thought, ok, she is saying positive things about Henry, and I can give her the benefit of the doubt and think that she believes these things and isn't just trying to save money or whatever other political reasons she might have to keep him in the school. The bottom line is that most administrators probably only know the kid on paper. They talk about him once a year at the IEP meeting, and then everything is carefully crafted to be positive. Remember the school psychologist who observed Henry? He didn't happen to observe any disruptive behavior, basically thought the kid was cute as a button and a little renaissance man. Yes, those words can describe my child. But he also has defecits- lots of them. I am his mom and it may sound odd to hear me talking like this. But if no one else will, I have to.
I have been drafting a response that would involve calculating how many days this year I got a note home saying that Henry had hurt someone, and how many times that resulted in him missing out on "the general ed classroom" that day, or even a special activity.
But yesterday I got a big boost: I had e-mailed Henry's classroom teacher, asking her to call me. We decided that she is really the only one who knows the school Henry- day in and day out. (I should have e-mailed her a week ago, but at first thought that might be odd- like asking your current boss about a new job you're interested in.)
In brief, (this is already NOT brief) Mrs. C totally agreed with me. She offered to call around and ask some of her colleagues for any inside scoop on the school, but concurred with all my reasons for thinking this was a good move for Henry. As I suspected, she was basically alone in trying to manage the kids in her classroom, and agreed that a whole school full of people who get it would be preferable. She also pointed out that special areas like art and music would be more accessible to Henry, as the ones in the regular elementary school are sometimes too involved or complex for her kids to participate in.
And then, the kicker: she is actually moving, and won't be back to teach this school year. And when she called to tell her supervisor about this, she was told that her supervisor is no longer working for the county. This type of inconsistency is one more reason I am looking at the private school. Yes, they may still have a high teacher turnover, but the program is more likely to remain consistent.
Mrs. C also offered to talk to the Director of Special Ed about Henry, and I have also received some ammunition from a certain fiery Cuban autism teacher I know, which will help me in my rebuttal. I'm not good with confrontation, especially confronting authority. But I can learn to do it for my kid.
My 20th high school reunion is this weekend. Yesterday I looked through a bunch of old pictures, scanned them, e-mailed them to some friends, and laughed and laughed and laughed. I am looking forward to more laughter this weekend. It seems like I am really thirsty for it lately.
Like, on our tour, when she mentioned that they have early dismissal every Friday? I heard that, but kind of filed it in the back of my mind- we'll figure that out somehow. But Bill was like "what would we do about the Fridays? What if the school district won't pay for it and, even with the Autism Scholarship that our state offers, we still have to pay $8000 a year out-of-pocket?"
Autism moms out there- are you sitting down? Because this will surely shock you: it looks like we will have to fight a little to convince the school district that this is the best thing for Henry. I broached the subject in an e-mail, and the Director of Special Ed wrote back saying (to paraphrase) Henry has made great progress here and I think he will continue to do the same in this community setting where he can spend lots of time in the general ed classroom and remain close to home and can go to school with his brother...
The first time I read the e-mail I was just pissed- she's saying no. A few hours later, I read it again and thought, ok, she is saying positive things about Henry, and I can give her the benefit of the doubt and think that she believes these things and isn't just trying to save money or whatever other political reasons she might have to keep him in the school. The bottom line is that most administrators probably only know the kid on paper. They talk about him once a year at the IEP meeting, and then everything is carefully crafted to be positive. Remember the school psychologist who observed Henry? He didn't happen to observe any disruptive behavior, basically thought the kid was cute as a button and a little renaissance man. Yes, those words can describe my child. But he also has defecits- lots of them. I am his mom and it may sound odd to hear me talking like this. But if no one else will, I have to.
I have been drafting a response that would involve calculating how many days this year I got a note home saying that Henry had hurt someone, and how many times that resulted in him missing out on "the general ed classroom" that day, or even a special activity.
But yesterday I got a big boost: I had e-mailed Henry's classroom teacher, asking her to call me. We decided that she is really the only one who knows the school Henry- day in and day out. (I should have e-mailed her a week ago, but at first thought that might be odd- like asking your current boss about a new job you're interested in.)
In brief, (this is already NOT brief) Mrs. C totally agreed with me. She offered to call around and ask some of her colleagues for any inside scoop on the school, but concurred with all my reasons for thinking this was a good move for Henry. As I suspected, she was basically alone in trying to manage the kids in her classroom, and agreed that a whole school full of people who get it would be preferable. She also pointed out that special areas like art and music would be more accessible to Henry, as the ones in the regular elementary school are sometimes too involved or complex for her kids to participate in.
And then, the kicker: she is actually moving, and won't be back to teach this school year. And when she called to tell her supervisor about this, she was told that her supervisor is no longer working for the county. This type of inconsistency is one more reason I am looking at the private school. Yes, they may still have a high teacher turnover, but the program is more likely to remain consistent.
Mrs. C also offered to talk to the Director of Special Ed about Henry, and I have also received some ammunition from a certain fiery Cuban autism teacher I know, which will help me in my rebuttal. I'm not good with confrontation, especially confronting authority. But I can learn to do it for my kid.
My 20th high school reunion is this weekend. Yesterday I looked through a bunch of old pictures, scanned them, e-mailed them to some friends, and laughed and laughed and laughed. I am looking forward to more laughter this weekend. It seems like I am really thirsty for it lately.
Wednesday, July 30, 2008
why can't real life be more like preschool?
Me: Oh, man, tomorrow I have to go back to work.
Thomas: Mommy, do you have to work the WHOLE TIME while you're at work? Do you get breaks?
Me: Oh, yes, we get breaks. (If you only knew how many breaks I take to talk or read blogs...)
Thomas: Do you have snack?
Me: Well, yes, we do have snack breaks. (If you only knew...)
Thomas: Whose turn is it to bring snack next? Yours or Karen's?
Thomas: Mommy, do you have to work the WHOLE TIME while you're at work? Do you get breaks?
Me: Oh, yes, we get breaks. (If you only knew how many breaks I take to talk or read blogs...)
Thomas: Do you have snack?
Me: Well, yes, we do have snack breaks. (If you only knew...)
Thomas: Whose turn is it to bring snack next? Yours or Karen's?
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