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.
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