It's been a long, full week. I worried at times that I had overscheduled Henry. Well, all of us, but especially Henry.
Of course I was planning things that he enjoys. But even things that he enjoys seem to fill him with anxiety. We think that any and every strong emotion gives him the same uneasy feeling, and he doesn't seem to know what to do with that feeling.
So what happens is that we enter the zoo, and he is immediately overwhelmed by the excitement of it all. He begins talking, non-stop. Sometimes in a whining tone, sometimes in an angry tone. A steady stream of worry-talk:
I will not see any animals. I will just go back home. There are no sharks. There are no wolves. Just home. (Hey, Henry, look at these bats!) NO BATS! You are the bats! Let's just go back to the car. Let's just go back to the parking lot. I will not! see! any! animals! (with a push to my belly upon each word)...
While the talking is going on, he is also likely to grab anyone who comes near- either to push or pinch. So Bill or I are constantly trying to hold on to him, both to keep him from hurting anyone, and in an effort to comfort him with some hugs and squeezes. I have no idea, really, if this helps or not. But it's what we do. We try to tell him that we understand that he's feeling excited, anxious, overwhelmed. (I introduced this word this week and he latched on to it, but kept saying that he felt "over-warmed".)
And just when I'm ready to bag it and say we'll go wait in the car, he focuses on something he wants to look at, mercifully shuts up, and seems to enjoy himself. He does have periods of enjoyment, or I wouldn't do stuff like this with him. If you asked him about any of our travels, I'm sure he'd tell you that he had "such a great time" and wants to go back.
It's not fun for the people we're with and I feel like it takes me away from enjoying things with Tommy. I have to be focused, at least 80% of the time, on Henry. And don't you think it must be taxing to Henry, to flip a switch from anguished to euphoric and back again, multiple times in one day?
It's exhausting and puzzling. But we keep on doing it. Keep putting our heads down and plunging ahead. But sometimes I wonder what he's really thinking? And whether this stress is worth it to him?
Saturday, July 25, 2009
Monday, July 13, 2009
food explorers
I'm beginning a 2-week "staycation" while the boys' caregiver is on her vacation. There's a lot I hope to do in these 2 weeks, including activity and non-activity with my kids. I also hope to get back to blogging (a common refrain among bloggers, it seems.)
I have a lot of BIG IDEAS floating around in my head that I want to unload, but today I think I'll start with something more manageable: a report on Henry's "food explorers" class.
Any of you with children with major feeding issues will already know all of this, and more. But for families like ours, with smaller (but still frustrating) food issues, maybe this will be helpful.
Henry eats a (comparatively) wide variety of foods, but is very resistant to trying anything new, and has an extreme reaction (gagging) when forced to try most new things and particularly vegetables. He also prefers to eat with his fingers and pick food apart, peel it, squash it, etc.
The food explorers meet twice a week. The kids are presented with a variety of foods to discuss that day. The foods are passed around the table and each child must serve him/herself. Thus they are forced to at least interact enough with the food to touch it and place it on their plates. For some children this is quite a feat in itself. I should note that the foods aren't anything exotic. Past sessions have included string cheese (just touching it to pull it out of the bag made Henry gag), turkey slices, orange bell pepper strips, vanilla yogurt, graham cracker sticks...
They discuss the properties of the foods, and last week they made a craft using the foods. The literature the therapists have been sending home each week really encourages children to play with their food, which would not have been my instinct.
There is some kind of reward system for interacting with the food. But no one is forced to eat anything. Overall it has been a positive experience for Henry, maybe because he is willing to try many of the foods- he gets a lot of positive feedback. But the idea is to focus on the positive, of course, no matter the level of interaction.
Let me give you an example of how this has translated into our home life: last night we served Henry hot dogs from the grill, blueberries, and barbeque potato chips. Seemingly three of his favorites. But the chips were a different brand, and were ridged. Totally and completely different from the barbeque chips that Henry likes. I was in the unusual parental position of asking Henry to eat one of his potato chips before he could have more blueberries.
"I'll sniff it" he offered.
"Um, OK" I agreed. Then I negotiated, "how about trying a lick of it?"
So he sportingly picked up the chip and licked it. I hoped that the taste might encourage him to actually eat the rest. It didn't, but I let the subject drop.
It will seem a little goofy to anyone else dining with us, but this system feels right to me. I hate only feeding Henry his favorite foods. But I hate forcing him to gag down a bite of broccoli even more. I like the idea of having him serve himself an un-preferred food, keep it on his plate, and maybe sniff or even lick it. It seems like a compromise we can live with and maybe it will condition him to eventually try something new.
I have a lot of BIG IDEAS floating around in my head that I want to unload, but today I think I'll start with something more manageable: a report on Henry's "food explorers" class.
Any of you with children with major feeding issues will already know all of this, and more. But for families like ours, with smaller (but still frustrating) food issues, maybe this will be helpful.
Henry eats a (comparatively) wide variety of foods, but is very resistant to trying anything new, and has an extreme reaction (gagging) when forced to try most new things and particularly vegetables. He also prefers to eat with his fingers and pick food apart, peel it, squash it, etc.
The food explorers meet twice a week. The kids are presented with a variety of foods to discuss that day. The foods are passed around the table and each child must serve him/herself. Thus they are forced to at least interact enough with the food to touch it and place it on their plates. For some children this is quite a feat in itself. I should note that the foods aren't anything exotic. Past sessions have included string cheese (just touching it to pull it out of the bag made Henry gag), turkey slices, orange bell pepper strips, vanilla yogurt, graham cracker sticks...
They discuss the properties of the foods, and last week they made a craft using the foods. The literature the therapists have been sending home each week really encourages children to play with their food, which would not have been my instinct.
There is some kind of reward system for interacting with the food. But no one is forced to eat anything. Overall it has been a positive experience for Henry, maybe because he is willing to try many of the foods- he gets a lot of positive feedback. But the idea is to focus on the positive, of course, no matter the level of interaction.
Let me give you an example of how this has translated into our home life: last night we served Henry hot dogs from the grill, blueberries, and barbeque potato chips. Seemingly three of his favorites. But the chips were a different brand, and were ridged. Totally and completely different from the barbeque chips that Henry likes. I was in the unusual parental position of asking Henry to eat one of his potato chips before he could have more blueberries.
"I'll sniff it" he offered.
"Um, OK" I agreed. Then I negotiated, "how about trying a lick of it?"
So he sportingly picked up the chip and licked it. I hoped that the taste might encourage him to actually eat the rest. It didn't, but I let the subject drop.
It will seem a little goofy to anyone else dining with us, but this system feels right to me. I hate only feeding Henry his favorite foods. But I hate forcing him to gag down a bite of broccoli even more. I like the idea of having him serve himself an un-preferred food, keep it on his plate, and maybe sniff or even lick it. It seems like a compromise we can live with and maybe it will condition him to eventually try something new.
Wednesday, June 10, 2009
end of school
I'm at home with "sick" (but not really sick) Tommy today, and thought I'd try to catch the blog up on the past month or so.Although Henry is still in school this week- making up some calamity days- his class had their end-of-the-year events last week. Thursday they had an "awards ceremony" and then early dismissal. The awards ceremony was cute- each child came to the front of the class to receive some kind of candy and a certificate. The awards were not academic, but based on the child's personality. For example, one boy was given a box of Whoppers and his award was for the "best storyteller". I can only assume that he tells some tall and lengthy tales, as some ASD kids tend to do.
After the award was given, classmates were encouraged to say something nice about their friend. I was so moved- even the children that I've observed to be very non-communicative stood up in front of the class and called on classmates by name. Those kids are troopers- every one of them! The same couple girls were always the ones to say something- and it usually was a take-off on what the teachers had said: in this example "you always tell really good stories".
Henry didn't want to say much about his classmates, and when I did prompt him to, you could tell that he was scripting. For example, one boy is on Henry's baseball team. I whispered in his ear that he could say something about that. Henry raised his hand and, when called on, stood up and said "you were once on my baseball team. The Florida Marlins." in an announcer-type voice. He didn't get that he was supposed to say something nice, like "you always do a good job".When school started in the fall , Henry was quite fixated on Prince Caspian. That's what he was for Halloween, and I think the teachers didn't realize it was just one in a string of movie obsessions. So all year they have all talked a lot about Prince Caspian, even though Henry doesn't show much interest at home anymore.
Henry's award was for "best hugger" and he was given a bag of Hershey's hugs. "I don't want this award" he proclaimed. "I want the Prince Caspian award". I was a little embarassed, but the teacher didn't miss a beat. She picked up a pen and wrote /Prince Caspian Award on the certificate. With any other, typical, child, I would think this was giving in/reinforcing bratty behavior. But as we parents (and teachers) of special ed kids know, we have to pick our battles.
After we left school that day, I re-learned a lesson. I thought I would suprise Henry with a trip to the zoo- just me and him. I didn't bring it up at home because I didn't want Tommy to hear and be jealous. Well, of course my little predictable-structure-loving man didn't like my idea. He wanted nothing to do with the zoo (even though he'd been asking to go for weeks). He wanted to go to the library. Of course. I persevered and drove out to the zoo, only to find that I didn't have my membership card. (Doh!) So what ended up happening? That's right, Henry got his way and we went to the library. At least we stopped at a park for a picnic lunch first.
Another lesson re-learned this week: make Henry do things, even when he protests. We joined the community center pool this weekend. Bill and Tommy went ahead to swim and I started laying the groundwork with Henry. He was watching the same scene over and over from Sleeping Beauty- the big finale when the Prince is let out of the dungeon and fights the dragon. re-playing it over and over. I could have just let him keep doing that while I cleaned the house or read a book.
I mentioned getting ready for the pool. He said he didn't want to go, but then turned the dvd off after one more playing of the scene. He sat on the couch, repeating that he didn't want to go. I threw his swim trunks and shirt down the stairs and by the time I got down there he had put them on. His words say "no" but his actions say "yes".
Would you believe that once he got in the pool (he was timid at first) he didn't want to get out for HOURS? I actually heard him saying "watch this mom" "watch this mom" over and over. It was awesome! But also humbling. How many days do I let him sit and perseverate on something, all by himself, rather than pushing him to do something interactive with us? I must remember not to get lazy.
One other development that I want to mention- Henry's speech and occupational therapists are starting a group called "Food Explorers" for kids with food issues. The idea is not necessarily to get them to eat anything new yet, but just get accustomed to touching the food, talking about it, in sort of a scientific way- talking about the properties of different foods, etc. The group will meet a couple times a week during the 5 or 6 weeks of summer school. I will let you know if anything exciting comes of it.
Sunday, April 12, 2009
hoarding bliss
This has been one of my favorite books since I was a child. One of the ones that always stayed with me. It appeals to my urge to capture things, feelings, moments and hold on to them. I might need them later, in the dark of winter.If you're not familiar with the story, Frederick is a field mouse who, while his brothers are gathering food for the coming winter, sits, gathering his own supplies of warmth and color.
Lately I find myself putting sickeningly sweet status updates on facebook, like "my jog this morning was bliss" or "this is the best day ever because m&ms were on sale at the grocery store". So for those of you who may be wondering if I'm on some new happy medication or have joined a cult, I want to explain that I'm really just Frederick-ing.
I am hanging on really tightly to good things when they happen, because they do happen, but sometimes they get buried in the bad. Springtime is an easy time of year for this, because everywhere you look there's a new beautiful thing growing, and even if it's a cloudy day the sun was out yesterday and should be out again tomorrow.
Henry is doing math homework without arguing. I'm registering Thomas for kindergarten and flying through the speech/language questionnaire without blinking. I know this child does not have speech/language difficulties because I also know a child who does have them.
I'm acknowledging this stuff- giving it the space and the respect it deserves. My life is far from perfect and I'll probably have a really crappy day tomorrow just as payback for all this gushing. But if I don't wallow in the good then I'm wallowing in the bad, and one lifts me up while the other drags me down.
Remember the damage our house sustained back in September? It was eventually repaired. Then more high winds blew through in February, and ripped even more siding off. It didn't all come off, though- some of it remained, half-attached, and banged against the wall outside Henry's bed. For days and nights on end.
As we negotiated with our insurance, we found a company that we wanted to do the work for us. Although nothing had been signed and no money had exchanged hands, these folks came out the very next day and tacked down the loose siding. Every night since then I have been thankful for the quiet in the wind. Something I took quite for granted until the storms came around.
I couldn't ask for a better metaphor. These storms blow through, they f*** things up, and we have a big mess to fix and a big pain-in-the-ass noise keeping us awake at night. But afterward we have a new appreciation for the quiet, the beautiful, the easy, and the hands that help quiet the noise.
Happy Easter and happy spring.
Saturday, March 28, 2009
He has a nickname at school: Hank.
There's a girl in his class with a crush on him.
When I toss him his jammies or throw his school clothes onto the floor, he just begins putting them on, without a word of instruction.
He still hums and hops when he's excited. Still does the v-sit thing and flaps a bit too.
He still eats with his hands, but will try a teeny-tiny taste of something new without arguing.
He watches the same clips on disney.com over and over and over and over and over, but will usually stop when the timer beeps.
He still doesn't choose to go outside much, but will go out agreeably when we force the issue, and has some fun once he's out there (see video below).
He did his ALGEBRA homework with no problem this week, with the help of a number line. (7 plus what number equals 13?)
Henry's always been on the.. ummm... easier end of the spectrum. Meaning his behaviors were never to the extreme of being debilitating or dangerous to the rest of the family or to himself. But he has been throwing "tantrums" at school ever since he first set foot in one. When he was 5, 6, 7, 8 he would throw chairs, knock over tables, kick, scratch and pinch. It was unpredictable and unmanageable for the teachers.
Now it's not happening anymore. I can't guarantee it won't happen again. I can't say that it's because of his new school or just growing up. Maybe he's just feeling more comfortable in his own skin.
I can't promise anyone that what works for my kid will work for yours. But I know you all love your kids just as much as I love mine. That's why we all found each other in the first place. And I know that even though it's the corniest thing in the world to say, loving your kid and talking to your friends and problem-solving your way through this stuff will work.
Now let's get out there and enjoy the weekend.
(Sorry this is sideways. When will I learn?!)
There's a girl in his class with a crush on him.
When I toss him his jammies or throw his school clothes onto the floor, he just begins putting them on, without a word of instruction.
He still hums and hops when he's excited. Still does the v-sit thing and flaps a bit too.
He still eats with his hands, but will try a teeny-tiny taste of something new without arguing.
He watches the same clips on disney.com over and over and over and over and over, but will usually stop when the timer beeps.
He still doesn't choose to go outside much, but will go out agreeably when we force the issue, and has some fun once he's out there (see video below).
He did his ALGEBRA homework with no problem this week, with the help of a number line. (7 plus what number equals 13?)
Henry's always been on the.. ummm... easier end of the spectrum. Meaning his behaviors were never to the extreme of being debilitating or dangerous to the rest of the family or to himself. But he has been throwing "tantrums" at school ever since he first set foot in one. When he was 5, 6, 7, 8 he would throw chairs, knock over tables, kick, scratch and pinch. It was unpredictable and unmanageable for the teachers.
Now it's not happening anymore. I can't guarantee it won't happen again. I can't say that it's because of his new school or just growing up. Maybe he's just feeling more comfortable in his own skin.
I can't promise anyone that what works for my kid will work for yours. But I know you all love your kids just as much as I love mine. That's why we all found each other in the first place. And I know that even though it's the corniest thing in the world to say, loving your kid and talking to your friends and problem-solving your way through this stuff will work.
Now let's get out there and enjoy the weekend.
(Sorry this is sideways. When will I learn?!)
Monday, March 16, 2009
hello out there...
So here's the thing- we're really happy with Henry's new school. I keep trying to put my finger on what it is, and find a good way to say that things are good without sounding like I'm criticizing every other type of classroom- and it's just paralyzing me.
So, just to get something out here, since I've been having blogger's block for a couple months, some things I love about Henry's school are...
--He gets art, PE and music. In his previous setting, activities in these specials often surpassed his abilities, so he wasn't included.
--He is in a classroom with 16 other students, and 5 teachers. He has lots of peer interaction, and enough teachers that he doesn't become too attached/dependent on one in particular.
--He is responding to the classroom behavior expectations- worries about getting a strike (consequence for bad behavior- 3 strikes and you're out) and gets excited about coloring in a square when he has an extra good day (once each square of the picture is colored in, the class gets a party)
--Since the 1st of the year, they have been selecting a "star student of the week". They make it seem like a reward for good behavior*, but I'm sure that every child will eventually get a turn. Henry was star student the week of Jan. 19, and he LOOOVED it. He was bursting with pride. Every week he reports to me whose turn it is to be star student, and adds that he wishes he could be star student again.
*The week that he was star student, the class newsletter said "Thank you Henry for being a great role model for your peers. Simple steps to be the Star Student: Follow classroom and school rules, Participate in class, Turn in daily homework, Set a good example for peers."
--Teachers and students seem to appreciate Henry for who he is. We've always heard "oh, he's so cute" "he's just darling" from teachers, and while that's nice to hear, it can at times sound like your child is not being taken seriously. Or like "I can't understand a damn word that the kid says, but he sure is cute with those glasses!"
My impression at the new school is that, while they do appreciate his looks and charm, the adults also have high expectations for my 9.5-year-old son.
The bigger picture that makes all of this work is, he is in a class with his peers (other children with autism- those peers. Not typical peers), but his education is molded to fit his individual needs. When I observed a couple weeks ago, a group of 6 students (including Henry) was working on their spelling words. He is in a different group for reading, another for math, etc.
In his previous school, I don't think he ever felt part of a class. When he was included in the typical classroom, he sat in the back with an aide, and as long as he wasn't disruptive, it was considered successful. But that felt like visiting the second grade, not being a part of it.
In the previous placement Henry had one teacher, 2 aides, and the teacher's supervisor was miles away. At the new school, teachers have so many colleagues, all expert in teaching children with ASDs, right in the same building. It has to make their job easier.
Throughout the years all of Henry's teachers have tried their damnedest. All of them. All of the aides too. But there just wasn't the manpower required to make it work this well. I question whether there is enough manpower in any public school system? But God knows that I'm no expert, so that's a debate for wiser heads than mine.
Some of the things Henry is doing lately that I'm geeked about (some are small, but you other moms get it that the proof is in the small stuff):
--Calling us "mom" and "dad" vs. mommy and daddy.
--Answering "yeah" rather than "yes". I know this is a pet peeve for some parents, but to me it sounds so much more natural.
--Getting off the bus, waving and saying "hi mom" first- before I greet him.
--Offering up tidbits about his day without being asked- especially if he's gotten a strike or colored in a square that day
--Using his body/muscles in new ways- pushing the shopping cart and then stepping up to ride on it- think about how much upper body strength that requires! And last night he "walked" his feet up on Bill while pushing up with his hands (can you picture that- like doing a pushup and walking your feet up the wall...)
--Awesome back-and-forth with his brother: "you're bothering me", "can you move please?", etc.
--Last night Henry inquired "what are you making for you to eat?" (He was already eating mac & cheese.) I misunderstood the question at first, thinking surely he was asking what else I was making for him to eat. But no- he just wondered what I was having! Just making conversation!
"A tuna wrap" I answered.
"Say that word again" he replied.
So I repeated, and explained how I was making it.
"Do you want to see?" I asked, thinking for sure he would gag when he saw (and smelled) the tuna salad. But no- he remained interested. I spooned the tuna into the tortilla and wrapped it up. "A tuna wrap!" he proclaimed. So proud of his new knowledge.
"Do you want to try a bite?" I asked.
"No thank you." No surprise there.
But who knows? Maybe next time he'll want to help me make it. Maybe one day I'll lounge on the couch while my son makes me a tuna wrap. It could happen. Anything is possible...
So, just to get something out here, since I've been having blogger's block for a couple months, some things I love about Henry's school are...
--He gets art, PE and music. In his previous setting, activities in these specials often surpassed his abilities, so he wasn't included.
--He is in a classroom with 16 other students, and 5 teachers. He has lots of peer interaction, and enough teachers that he doesn't become too attached/dependent on one in particular.
--He is responding to the classroom behavior expectations- worries about getting a strike (consequence for bad behavior- 3 strikes and you're out) and gets excited about coloring in a square when he has an extra good day (once each square of the picture is colored in, the class gets a party)
--Since the 1st of the year, they have been selecting a "star student of the week". They make it seem like a reward for good behavior*, but I'm sure that every child will eventually get a turn. Henry was star student the week of Jan. 19, and he LOOOVED it. He was bursting with pride. Every week he reports to me whose turn it is to be star student, and adds that he wishes he could be star student again.
*The week that he was star student, the class newsletter said "Thank you Henry for being a great role model for your peers. Simple steps to be the Star Student: Follow classroom and school rules, Participate in class, Turn in daily homework, Set a good example for peers."
--Teachers and students seem to appreciate Henry for who he is. We've always heard "oh, he's so cute" "he's just darling" from teachers, and while that's nice to hear, it can at times sound like your child is not being taken seriously. Or like "I can't understand a damn word that the kid says, but he sure is cute with those glasses!"
My impression at the new school is that, while they do appreciate his looks and charm, the adults also have high expectations for my 9.5-year-old son.
The bigger picture that makes all of this work is, he is in a class with his peers (other children with autism- those peers. Not typical peers), but his education is molded to fit his individual needs. When I observed a couple weeks ago, a group of 6 students (including Henry) was working on their spelling words. He is in a different group for reading, another for math, etc.
In his previous school, I don't think he ever felt part of a class. When he was included in the typical classroom, he sat in the back with an aide, and as long as he wasn't disruptive, it was considered successful. But that felt like visiting the second grade, not being a part of it.
In the previous placement Henry had one teacher, 2 aides, and the teacher's supervisor was miles away. At the new school, teachers have so many colleagues, all expert in teaching children with ASDs, right in the same building. It has to make their job easier.
Throughout the years all of Henry's teachers have tried their damnedest. All of them. All of the aides too. But there just wasn't the manpower required to make it work this well. I question whether there is enough manpower in any public school system? But God knows that I'm no expert, so that's a debate for wiser heads than mine.
Some of the things Henry is doing lately that I'm geeked about (some are small, but you other moms get it that the proof is in the small stuff):
--Calling us "mom" and "dad" vs. mommy and daddy.
--Answering "yeah" rather than "yes". I know this is a pet peeve for some parents, but to me it sounds so much more natural.
--Getting off the bus, waving and saying "hi mom" first- before I greet him.
--Offering up tidbits about his day without being asked- especially if he's gotten a strike or colored in a square that day
--Using his body/muscles in new ways- pushing the shopping cart and then stepping up to ride on it- think about how much upper body strength that requires! And last night he "walked" his feet up on Bill while pushing up with his hands (can you picture that- like doing a pushup and walking your feet up the wall...)
--Awesome back-and-forth with his brother: "you're bothering me", "can you move please?", etc.
--Last night Henry inquired "what are you making for you to eat?" (He was already eating mac & cheese.) I misunderstood the question at first, thinking surely he was asking what else I was making for him to eat. But no- he just wondered what I was having! Just making conversation!
"A tuna wrap" I answered.
"Say that word again" he replied.
So I repeated, and explained how I was making it.
"Do you want to see?" I asked, thinking for sure he would gag when he saw (and smelled) the tuna salad. But no- he remained interested. I spooned the tuna into the tortilla and wrapped it up. "A tuna wrap!" he proclaimed. So proud of his new knowledge.
"Do you want to try a bite?" I asked.
"No thank you." No surprise there.
But who knows? Maybe next time he'll want to help me make it. Maybe one day I'll lounge on the couch while my son makes me a tuna wrap. It could happen. Anything is possible...
Thursday, February 19, 2009
and then he was 5
Flashback: Feb. 21, 2004: It was time to take Thomas home from the hospital. Bill went to pull the car around and the hospital aide arrived to wheel us downstairs in a wheelchair. (Isn't it funny that they escort you out in a wheelchair? It's like one last act of pampering before you are dumped into the cold water of mothering, where you are the caregiver, not the cared-for.) I'm sorry that I can't remember the woman's face or ethnicity; I only remember that her English was a bit broken. As she wheeled me down the hall, she observed "this not your first baby."It wasn't a question- it was an observation. She could tell by the casual way I held him slung in one arm (and held a flower arrangement in the other) that I had done this before. What she couldn't know was how much different the first baby had been- that I left the hospital without him. I'm not sure why that woman's comment has stuck in my head all these years. I guess it was a glimpse into how I was viewed by others; a mother. A mother who knows what the hell she's doing. Some days I feel like that's accurate, other days- not so much.
No, he wasn't my first baby. But he was my last. And now he's 5.
This month the preschool teachers held conferences to let us know how our children stack up against the kindergarten readiness checklist. Tommy is ready. He knows his letters and numbers and is starting to read!!! I won't lie- it was good to hear them say that he could exhibit skills that many of his classmates can't yet. It felt even better to hear that he is always interested in learning, always participating. What more can I want for my son? Only that he keeps his inquiring mind fresh, and doesn't get bored or stifled as the school years go on.
Preschool has felt different this year. Last year, at the year-end picnic, he still didn't know any of his classmates' names. This year he has really matured a lot and made friends in his class. We invited some of them to his party (at the gymnastics place again), along with old and new friends from L's house.
Yesterday we visited the doctor (and left with an antibiotic prescription for his sinus infection). Tommy told the doctor he is "excited about being 5". He doesn't care about the 3 shots in store at next week's 5-year checkup, except to say "maybe if I'm good they'll give me 3 suckers".
He's a good boy with a good attitude. He's kind and silly and smart and affectionate. He loves Magic School Bus books, he loves to build with legos, he loves to ask questions. He also loves to watch Spongebob and eat Life cereal for every meal. He is a light in my life every day and I am so thankful for him.
Monday, January 12, 2009
what's been happening
Henry did fantastic going back to school last week. I have hesitated to write about it because I know many other kids had a rougher time getting back on schedule, and I don't want to seem like I'm bragging! But we all know that what goes around comes around, and I'm sure we've got a rough week in our future.
Monday he got off the bus in a cheerful mood, told Bill he had "a terrific day", and that he wanted to "go home and play with that Wii" instead of going to daddy's workout place. Bill obliged, and they had several rousing games of bowling and baseball. (Back in the summer I wrote about how much Henry enjoyed playing Wii. We didn't end up getting one for his birthday, but did score one for Christmas.) I can't say enough about the Wii. Not only does it get our sedentary guy moving, and trying new things, but he loves to play with others, and cheer them on. "Pick up that spare Daddy!" he'll holler, frame after frame after frame...
The only downside, as you might have suspected, is getting him to stop playing. He becomes quite single-minded and frantic about playing, and shouts and cries when it's time to stop. Hopefully that will get better over time.
Here is a little video from Christmas day at my Mother-in-Law's house. Henry is bowling and you can hear him announce "8 pins!" and then "1 pin!" He also likes to mimic some of the game noises...
Another cool thing that happened Monday was that Henry sat and watched the first hour of the Fiesta Bowl with Bill. He really watched and paid attention to the game, and echoed every single thing that his dad said ("Ahhh- you gotta catch that!") It was pretty neat to see and hear!
Tuesday evening Henry told me his teacher "wrote a very special note". I checked his notebook, and here's what it said:
Henry has been an excellent A+ student! I told him that I would write a very special note. We are very pleased with Henry's hard work and excellent attitude! Keep up the good work Henry!
I can't be sure what was behind this, if it was a bribe of some kind? But whatever the story behind it, I loved reading it. A hell of a lot nicer to read than the notes last year about how he was hurting his friends. And a good reminder that positive reinforcement works with kids. All kids.
Considering what a good week it was, I was caught off-guard by the sadness on Friday. You know, the sadness that is always there, beneath the surface, when you have a child with a disability. I was reading through all the papers that Henry brought home, and there was one announcing get-togethers for siblings. The flyer included quotes from kids about how much fun the groups were and explained that they discuss the hard parts and the good parts of having a special-needs brother or sister.
And I just started crying. Bam.
Um, hello? Your son was diagnosed with PDD 4 years ago. His brother and sister are both siblings of a special-needs kid. This is not news.
But sometimes you see it in a different context and it somehow strikes you anew.
And that brings me to another item I wanted to write about. We have talked to Tommy a little bit about Autism- explaining that some things are harder for his brother, etc. So one morning before school they were watching 101 Dalmations. There's a scene where all the dalmations are supposed to go to bed, but one keeps watching tv. So we're driving to the bus stop and Tommy pipes up "mommy, maybe Lucky* is Autistic. Because he gets right up close to the tv and doesn't want to stop watching it, just like Henry."
Then he turns to Henry and says "Henry, do you know that you are Autistic?" And I just about drive the car up onto the sidewalk.
Henry doesn't even look up from his book, just replies "yes".
So there we have it. All my worry about explaining stuff and the sibling relationship was for nothing.
Here are the brothers having a sword fight on Christmas- the weather was beautiful in Charlotte:
Monday he got off the bus in a cheerful mood, told Bill he had "a terrific day", and that he wanted to "go home and play with that Wii" instead of going to daddy's workout place. Bill obliged, and they had several rousing games of bowling and baseball. (Back in the summer I wrote about how much Henry enjoyed playing Wii. We didn't end up getting one for his birthday, but did score one for Christmas.) I can't say enough about the Wii. Not only does it get our sedentary guy moving, and trying new things, but he loves to play with others, and cheer them on. "Pick up that spare Daddy!" he'll holler, frame after frame after frame...
The only downside, as you might have suspected, is getting him to stop playing. He becomes quite single-minded and frantic about playing, and shouts and cries when it's time to stop. Hopefully that will get better over time.
Here is a little video from Christmas day at my Mother-in-Law's house. Henry is bowling and you can hear him announce "8 pins!" and then "1 pin!" He also likes to mimic some of the game noises...
Another cool thing that happened Monday was that Henry sat and watched the first hour of the Fiesta Bowl with Bill. He really watched and paid attention to the game, and echoed every single thing that his dad said ("Ahhh- you gotta catch that!") It was pretty neat to see and hear!
Tuesday evening Henry told me his teacher "wrote a very special note". I checked his notebook, and here's what it said:
Henry has been an excellent A+ student! I told him that I would write a very special note. We are very pleased with Henry's hard work and excellent attitude! Keep up the good work Henry!
I can't be sure what was behind this, if it was a bribe of some kind? But whatever the story behind it, I loved reading it. A hell of a lot nicer to read than the notes last year about how he was hurting his friends. And a good reminder that positive reinforcement works with kids. All kids.
Considering what a good week it was, I was caught off-guard by the sadness on Friday. You know, the sadness that is always there, beneath the surface, when you have a child with a disability. I was reading through all the papers that Henry brought home, and there was one announcing get-togethers for siblings. The flyer included quotes from kids about how much fun the groups were and explained that they discuss the hard parts and the good parts of having a special-needs brother or sister.
And I just started crying. Bam.
Um, hello? Your son was diagnosed with PDD 4 years ago. His brother and sister are both siblings of a special-needs kid. This is not news.
But sometimes you see it in a different context and it somehow strikes you anew.
And that brings me to another item I wanted to write about. We have talked to Tommy a little bit about Autism- explaining that some things are harder for his brother, etc. So one morning before school they were watching 101 Dalmations. There's a scene where all the dalmations are supposed to go to bed, but one keeps watching tv. So we're driving to the bus stop and Tommy pipes up "mommy, maybe Lucky* is Autistic. Because he gets right up close to the tv and doesn't want to stop watching it, just like Henry."
Then he turns to Henry and says "Henry, do you know that you are Autistic?" And I just about drive the car up onto the sidewalk.
Henry doesn't even look up from his book, just replies "yes".
So there we have it. All my worry about explaining stuff and the sibling relationship was for nothing.
Here are the brothers having a sword fight on Christmas- the weather was beautiful in Charlotte:
Friday, December 12, 2008
blah blah blah about the blog
When I started this blog over 3 years ago (!!!), I think my aim was to have a conversation about autism. No- that's not quite right- my aim was to have a conversation about my son who is autistic. About my life as his mother. A conversation with strangers who had something in common with me. In doing so, I hoped to quiet my mind (a phrase from my yoga DVD) and find comfort and familiarity in a situation that was sometimes uncomfortable and unfamiliar.
Over the next 300 posts (this turns out to be published post #302), I did find comfort. And I found friends. And I found a voice. I found a hobby that was/is quite rewarding to me.
But I didn't quite think through the ramifications of this little website. I told my family about it- mostly because I didn't want them to think I was hiding something from them- sneaking down to the basement to clickity-clack on my secret computer project. But I didn't tell anyone else. None of my real-life friends or co-workers. No one.
It wasn't a deep, dark secret or anything, but more like this: say I decided to take up tap dancing or some other new interest; I might not be that good at it, no one else might really give a shit about it, I would seem like I was fishing for compliments if I told everyone about it, and really, it's just something I'm doing for me- something private between me and my tap shoes. I talk to my new tap-dancing friends about it because it's something we share, but I'm not going to bore the hell out of my neighbors by telling them about it... ok, you get the analogy.
And then, after a couple years went by, it seemed even weirder to tell anyone, because if they surfed over to check it out they'd see all these dozens of posts of baggage, and it would seem like I had been keeping this big secret side of me, and again like I was fishing for compliments...
I realize that I'm waaay over-thinking this, but that is my tendency, isn't it?
But my mom and my husband, God bless them both, have been telling lots of folks about this blog. (And I never told them not to, so it's not like they're going against my wishes, or they didn't know that they were.) But a couple weeks ago they each told someone new about the blog who has a connection to Henry's school.
And that was just a little to close for comfort. So I freaked out and didn't write anything for awhile, briefly made the site for invite only (with myself as the only invitee!), and now I'm posting this little brain-dump.
I have lots of options: I could go to a invite-only site. I could keep this site but be more careful (more thoughtful?) about what I write. I could go to a host like vox that lets me decide what kind of post I'm writing (for public or private publishing). None of those options is totally appealing to me, I think because the first option eliminates the opportunity to meet new readers, while the other two options require more work on my part.
So that's the state of the blog right now. Please weigh in with your thoughts about blogging, privacy, and my over-reaction to the situation. I'd like to know what you think.
Over the next 300 posts (this turns out to be published post #302), I did find comfort. And I found friends. And I found a voice. I found a hobby that was/is quite rewarding to me.
But I didn't quite think through the ramifications of this little website. I told my family about it- mostly because I didn't want them to think I was hiding something from them- sneaking down to the basement to clickity-clack on my secret computer project. But I didn't tell anyone else. None of my real-life friends or co-workers. No one.
It wasn't a deep, dark secret or anything, but more like this: say I decided to take up tap dancing or some other new interest; I might not be that good at it, no one else might really give a shit about it, I would seem like I was fishing for compliments if I told everyone about it, and really, it's just something I'm doing for me- something private between me and my tap shoes. I talk to my new tap-dancing friends about it because it's something we share, but I'm not going to bore the hell out of my neighbors by telling them about it... ok, you get the analogy.
And then, after a couple years went by, it seemed even weirder to tell anyone, because if they surfed over to check it out they'd see all these dozens of posts of baggage, and it would seem like I had been keeping this big secret side of me, and again like I was fishing for compliments...
I realize that I'm waaay over-thinking this, but that is my tendency, isn't it?
But my mom and my husband, God bless them both, have been telling lots of folks about this blog. (And I never told them not to, so it's not like they're going against my wishes, or they didn't know that they were.) But a couple weeks ago they each told someone new about the blog who has a connection to Henry's school.
And that was just a little to close for comfort. So I freaked out and didn't write anything for awhile, briefly made the site for invite only (with myself as the only invitee!), and now I'm posting this little brain-dump.
I have lots of options: I could go to a invite-only site. I could keep this site but be more careful (more thoughtful?) about what I write. I could go to a host like vox that lets me decide what kind of post I'm writing (for public or private publishing). None of those options is totally appealing to me, I think because the first option eliminates the opportunity to meet new readers, while the other two options require more work on my part.
So that's the state of the blog right now. Please weigh in with your thoughts about blogging, privacy, and my over-reaction to the situation. I'd like to know what you think.
Monday, November 24, 2008
warm fuzzy
(My sons holding hands on a walk.)
Maybe it's the cherry pie that Henry and I just baked and sampled, or maybe I'm getting all wrapped up in the season- I'm really counting my blessings right now.
It's no accident that Thanksgiving comes at this dreary time of year- something pleasant (or at least busy) to keep us occupied, or we might all be tempted to hide under the covers all day long. I know it was hard for me to get moving on this Monday morning- the sun not up yet and the rain drizzling down. Today I realized the truth in the cliche: my kids are literally the thing that make me willing to get out of bed every day. I don't mean that in a hideously depressed kind of way. I just mean- on a day like today I cannot imagine being motivated by anything else. But those two boys make me smile every morning- they make it worthwhile. They're the reason I go to work and the reason I go to sleep so early and the reason I try to figure shit out.
Today's dreary Monday-ness was worsened by the fact that I scooted Henry on to the bus this morning without his backpack. So I needed to drive it up to him at school before lunchtime. What a lucky mistake that turned out to be! I got to see his classroom buzzing with activity. Henry "introduced" me to his teachers and classmates. (Well, sort of. He said "this is my mom", but usually neglected to tell me the other person's name.) I was so impressed by the way that all of the children told me their names and mumbled "nice to meet you". They made varying levels of eye-contact, but wow- when those kids looked me in the eye? I was smitten.I may have written before about the old man in Chicago who said that (then-1.5-year-old) Henry had an "old soul". There's something special about spectrum kids, whether it's that they have "old souls" or just that I know how much it takes for them to look me sweetly in the eye and introduce themselves. But whatever it is, I'm hooked.
Mix in a few laughs with old friends on the phone this weekend, my lifeline of internet friends that I can now reach through various media (although I haven't figured out how to Twitter from my cell phone), the sound of two boys and their dad roughhousing upstairs, Thomas' artwork (pictured above), and I have a lot to be thankful for.
Thursday, November 20, 2008
So I've been thinking about what I want to write about:
The worry that grips me whenever Henry is sick, as he has been the past few days. I know this worry is pretty ridiculous when you consider that some mothers have things like brain tumors to worry about, while my child has a common cold virus, and all it really comes down to is that he's been sickly all his life and I don't like it.
And really Henry's probably toying with me when he asks me to tell and re-tell the story of the worst day of my life while we wait in the doctor's office for 2 hours next to the little girl holding a barf bowl. He's really just trying to weaken my defenses so I will agree to buy him 3 rewards (a dvd, puzzle, and sticker book, oh and also a box of Christmas Tree Cakes) rather than the one reward that was promised. Touche little sick one.
Maybe a more entertaining thing for me to write about would be how much of an ass I made of myself at Thomas' preschool for those 2 weeks that L was out of commission. I'm a little perplexed that I feel comfortable talking to strangers at work all day long, most of the time without embarassing myself, but talking to other parents at preschool seemed to make me lose all sense.
Just to appreciate the faux pas, let's imagine the scenario using my blogging friends and their children. Say we're all out in the hallway waiting for our children to be dismissed from class (wouldn't that be awesome if they all went to the same school?!). I turn to, say, MOM-NOS and say "Did Nik have fun at the zoo this weekend?" And MOM-NOS answers "I don't know." I furrow my brow over this odd answer for a few seconds until I realize that MOM-NOS must not be Nik's mother.
Yes, quite embarrassing. Made only slightly better by Thomas telling me "it's ok mommy, I mix up Nik and Bud's mommies all the time. They kind of look alike." Not really comforting coming from the 4-year-old who doesn't even know all his classmates' names.
Ironically, in this same imaginary scenario, Bud bites Tommy the next day. So MOM-NOS (who I've been trying to avoid after my slip-up) stops me on the way in to pick up the kids. She says "I'm so sorry that Bud bit Tommy."
And I blurt out "Well I'm so sorry that I thought you were Nik's mom!"
I then go on with something inappropriate about how my older son has autism and hurts other kids sometimes so I totally understand. Why did I respond this way? It sounded both like I thought her child was autistic and also like I thought it was just fine for children to hurt one another.
By the end of the week, when another nice mom inquired about having a playdate, I just stared at her with deer-in-the-headlights eyes. A PLAYDATE?! HOW DOES THAT WORK? DO I HAVE TO TALK TO YOU THE WHOLE TIME? BUT I'LL SAY SO MANY STUPID THINGS!
I guess I'll just chalk it up to being out of my element for a couple weeks. We live in a different school district than most of these people, so I can start over fresh when Tommy starts kindergarten next fall.
For some reason I am reminded of an embarrassing moment from when Kate was little:
It was first grade and she had just come to live with us. I had an inferiority complex about not being a "real mom". I thought all the other mothers new all the secrets because they had actually birthed their children. I freaked out about packing her lunch and bringing a dessert to the Brownie potluck. I thought that all the other moms made homemade secret recipe treats, and that they were given those secret recipes at the hospital before they brought their babies home or something. (I thought that until I arrived at the first potluck event and saw the table covered with store-bought cookies.)
So, it was Halloween night and a friend from Kate's class comes to the door with her mom. I'm trying to make friendly-mom chit-chat, and I say "so is M's dad at home giving out candy?" M's mom replies "I don't know." See, it turns out that M's mom and dad were never married and never lived together. It turns out that not every family is cut from the same cookie-cutter. I was so busy feeling like the odd man out because I was a step-mom (and not even a legal stepmom yet at that point- we weren't married), that I didn't realize there were lots of other unconventional families out there as well.
It's disconcerting that I still feel so uneasy around other moms sometimes- 2 kids and 12 years later.
The worry that grips me whenever Henry is sick, as he has been the past few days. I know this worry is pretty ridiculous when you consider that some mothers have things like brain tumors to worry about, while my child has a common cold virus, and all it really comes down to is that he's been sickly all his life and I don't like it.
And really Henry's probably toying with me when he asks me to tell and re-tell the story of the worst day of my life while we wait in the doctor's office for 2 hours next to the little girl holding a barf bowl. He's really just trying to weaken my defenses so I will agree to buy him 3 rewards (a dvd, puzzle, and sticker book, oh and also a box of Christmas Tree Cakes) rather than the one reward that was promised. Touche little sick one.
Maybe a more entertaining thing for me to write about would be how much of an ass I made of myself at Thomas' preschool for those 2 weeks that L was out of commission. I'm a little perplexed that I feel comfortable talking to strangers at work all day long, most of the time without embarassing myself, but talking to other parents at preschool seemed to make me lose all sense.
Just to appreciate the faux pas, let's imagine the scenario using my blogging friends and their children. Say we're all out in the hallway waiting for our children to be dismissed from class (wouldn't that be awesome if they all went to the same school?!). I turn to, say, MOM-NOS and say "Did Nik have fun at the zoo this weekend?" And MOM-NOS answers "I don't know." I furrow my brow over this odd answer for a few seconds until I realize that MOM-NOS must not be Nik's mother.
Yes, quite embarrassing. Made only slightly better by Thomas telling me "it's ok mommy, I mix up Nik and Bud's mommies all the time. They kind of look alike." Not really comforting coming from the 4-year-old who doesn't even know all his classmates' names.
Ironically, in this same imaginary scenario, Bud bites Tommy the next day. So MOM-NOS (who I've been trying to avoid after my slip-up) stops me on the way in to pick up the kids. She says "I'm so sorry that Bud bit Tommy."
And I blurt out "Well I'm so sorry that I thought you were Nik's mom!"
I then go on with something inappropriate about how my older son has autism and hurts other kids sometimes so I totally understand. Why did I respond this way? It sounded both like I thought her child was autistic and also like I thought it was just fine for children to hurt one another.
By the end of the week, when another nice mom inquired about having a playdate, I just stared at her with deer-in-the-headlights eyes. A PLAYDATE?! HOW DOES THAT WORK? DO I HAVE TO TALK TO YOU THE WHOLE TIME? BUT I'LL SAY SO MANY STUPID THINGS!
I guess I'll just chalk it up to being out of my element for a couple weeks. We live in a different school district than most of these people, so I can start over fresh when Tommy starts kindergarten next fall.
For some reason I am reminded of an embarrassing moment from when Kate was little:
It was first grade and she had just come to live with us. I had an inferiority complex about not being a "real mom". I thought all the other mothers new all the secrets because they had actually birthed their children. I freaked out about packing her lunch and bringing a dessert to the Brownie potluck. I thought that all the other moms made homemade secret recipe treats, and that they were given those secret recipes at the hospital before they brought their babies home or something. (I thought that until I arrived at the first potluck event and saw the table covered with store-bought cookies.)
So, it was Halloween night and a friend from Kate's class comes to the door with her mom. I'm trying to make friendly-mom chit-chat, and I say "so is M's dad at home giving out candy?" M's mom replies "I don't know." See, it turns out that M's mom and dad were never married and never lived together. It turns out that not every family is cut from the same cookie-cutter. I was so busy feeling like the odd man out because I was a step-mom (and not even a legal stepmom yet at that point- we weren't married), that I didn't realize there were lots of other unconventional families out there as well.
It's disconcerting that I still feel so uneasy around other moms sometimes- 2 kids and 12 years later.
Monday, November 10, 2008
historic
I'm not a political blogger and have tried to stay far away from the subject of the election. I have my opinions and beliefs, but I usually keep them to myself- I don't try to convince anyone else and I don't want them to try to convince me. But I was not unaffected by the frenzy of the 2008 election: this year I did something I've not done before- I put out a yard sign. One of probably 40 on our street, and 35 of them were for the same candidate. But it still felt like a declaration to me. 39 years old, and I'm still learning to speak out about what I believe. I woke up on Election Day feeling as excited as I do on Christmas morning. And when I turned on the tv Wednesday morning at 5 (I went to bed at 10, not guessing the race would be decided so quickly), and saw the news "Obama Makes History", I cried. Not just because my candidate had won- I always vote for the Democrat- sometimes they win, sometimes they lose. I cried because I never dreamed we'd see a black president with a funny-sounding name in my lifetime. That's what gives me hope about this election- maybe our country is not as bitter and frightened and cynical and divided as I thought.
My kids will grow up knowing that a man's race is as irrelevant to his ability to be president as is his shoe size or his middle name.
There's a lot I want to say about this election, but it's all being said so well by others already... I don't know how to gather my thoughts. I just don't ever remember feeling this excited on Election Day. It's nice to have the idealism and optimism back for a little while.
Friday, November 07, 2008
ducking and rolling
I know I've said this before: that I like to think I'm a real flexible, by-the-seat-of-my-pants mom (in a good way). But too much of that can wear me out- I really like my routine. This week has been chock-full of changes and adjustments- ducking and rolling.
We ended up voting when the polls first opened Tuesday- Bill went from work (he goes in to work very early), the boys and I went up and got in line, waited about 20 minutes or so and then Bill was done and could take them home while I kept waiting. I love taking my kids to the polls when I can, I want them to understand what a special right it is. I always get choked up when I explain that people in other countries don't get to choose who their leader is. (The election merits a separate post: coming soon.)
So anyway, the voting was out of the way and we got to the bus stop right on schedule.
Every morning Henry carefully selects a half dozen prints, along with a few books or magazines, or maybe a DVD box, to take along in the car and on the bus. His bus ride is about 40 minutes each way. A couple times he has brought a Leapster to play or the CD player and headphones to listen to, but mostly he just brings his beloved things to look at. While we wait for the bus I check each item to make sure it bears his name, so we can get it back eventually if it is left somewhere.
Monday afternoon Bill reported that the bus driver told him she wanted Henry to only bring one thing on the bus. I guess I assumed this was a suggestion, and didn't realize that it was a new rule. One that we should have prepped for a bit before Tuesday morning. So I walk Henry up to the bus and she stops him and says "remember, you can only bring one thing today."
Aye yie yie. His face crumpled and he proclaimed "I will bring nothing! I will leave it here!" I was about to cry myself. I was very close to just telling her that we would start the new plan tomorrow- we need more time to get used to the idea. But I didn't want to be the parent that undermines the bus driver's authority.
I do understand her reasoning: Henry wants to keep the stuff in his hands. He refuses to put it in his backpack, even just getting on and off the bus. His little legs are still so short that he can barely climb the bus steps as it is, and when you factor in the hodge-podge handful of papers sticking this way and that, you know he's going to fall or drop something, crawl around to find it, and hold up all the kids on the bus as well as all the traffic lined up behind it. I do understand. But I'm sad for my kid. Sad that he doesn't understand this better and sad that he won't just adapt by shoving the stuff in his backpack. Sad that I can't just make it right for him. Sad that I couldn't just grab him and his stuff off the bus, put him in the car, and drive him to school. But what would that achieve? It would make him feel better and make me feel better...
Anyway, he was pissed and I was pissed and the bus drove away. I was frankly worried that he would become very aggressive on the bus and start attacking other kids. Ms. Bus Driver has not seen that side of Henry. She would be (again, understandably) very upset and then the whole problem would escalate...
I immediately vented to my new mom friend at the bus stop, and she advised me to call the school and ask them to help me work on this issue. I called and spoke to one of his teachers to warn her that he might be upset when he gets to school. She said that they have been rewarding Henry with prints from the computer, so he has a collection of them at school also. She offered that maybe if I remind him that he has some prints at school, he'd easier leave them off the bus. I called later in the afternoon to check on him, and was told that he was having a fine day. So hopefully he is learning to manage his frustration. The past couple days have gotten better at the bus stop. This morning he still went through the motions of saying "I will bring nothing!" But then picked up his book and carried it to his seat.
But back to Tuesday morning: after the sad incident on the bus, Thomas and I drove on to L's house, only to be greeted by L in tears, saying she was having a gall bladder attack and needed to go to the emergency room! She ended up being admitted to the hospital and having surgery to remove a stone that had traveled, as well as remove her gall bladder.
So I unexpectedly had the rest of the day off on Tuesday, and presumably the rest of the week. It's not a bad thing to have to take time off work, but it's worrisome when your "co-mother" (I think I'm going to start calling her that!) is in terrible pain!
I always feel so strange when I'm home like that- torn between wanting to do stuff (go to the park, make a craft...) and wanting to veg out on the couch and eat Halloween candy. I mostly did the latter, although Thomas and I did play some legos and Bakugan. When I talked to my dad Wednesday and told him what was going on, he offered to have Tommy stay at their house for a few days, and we took him up on that offer.
I don't like that Tommy has been gone so much lately (he was at their house 2 weekends ago so we could go to a football game, and then spent the night at a friend's house last weekend), but he did call last night saying he missed us, so I guess he's not ready to leave home yet :-)
We ended up voting when the polls first opened Tuesday- Bill went from work (he goes in to work very early), the boys and I went up and got in line, waited about 20 minutes or so and then Bill was done and could take them home while I kept waiting. I love taking my kids to the polls when I can, I want them to understand what a special right it is. I always get choked up when I explain that people in other countries don't get to choose who their leader is. (The election merits a separate post: coming soon.)
So anyway, the voting was out of the way and we got to the bus stop right on schedule.
Every morning Henry carefully selects a half dozen prints, along with a few books or magazines, or maybe a DVD box, to take along in the car and on the bus. His bus ride is about 40 minutes each way. A couple times he has brought a Leapster to play or the CD player and headphones to listen to, but mostly he just brings his beloved things to look at. While we wait for the bus I check each item to make sure it bears his name, so we can get it back eventually if it is left somewhere.
Monday afternoon Bill reported that the bus driver told him she wanted Henry to only bring one thing on the bus. I guess I assumed this was a suggestion, and didn't realize that it was a new rule. One that we should have prepped for a bit before Tuesday morning. So I walk Henry up to the bus and she stops him and says "remember, you can only bring one thing today."
Aye yie yie. His face crumpled and he proclaimed "I will bring nothing! I will leave it here!" I was about to cry myself. I was very close to just telling her that we would start the new plan tomorrow- we need more time to get used to the idea. But I didn't want to be the parent that undermines the bus driver's authority.
I do understand her reasoning: Henry wants to keep the stuff in his hands. He refuses to put it in his backpack, even just getting on and off the bus. His little legs are still so short that he can barely climb the bus steps as it is, and when you factor in the hodge-podge handful of papers sticking this way and that, you know he's going to fall or drop something, crawl around to find it, and hold up all the kids on the bus as well as all the traffic lined up behind it. I do understand. But I'm sad for my kid. Sad that he doesn't understand this better and sad that he won't just adapt by shoving the stuff in his backpack. Sad that I can't just make it right for him. Sad that I couldn't just grab him and his stuff off the bus, put him in the car, and drive him to school. But what would that achieve? It would make him feel better and make me feel better...
Anyway, he was pissed and I was pissed and the bus drove away. I was frankly worried that he would become very aggressive on the bus and start attacking other kids. Ms. Bus Driver has not seen that side of Henry. She would be (again, understandably) very upset and then the whole problem would escalate...
I immediately vented to my new mom friend at the bus stop, and she advised me to call the school and ask them to help me work on this issue. I called and spoke to one of his teachers to warn her that he might be upset when he gets to school. She said that they have been rewarding Henry with prints from the computer, so he has a collection of them at school also. She offered that maybe if I remind him that he has some prints at school, he'd easier leave them off the bus. I called later in the afternoon to check on him, and was told that he was having a fine day. So hopefully he is learning to manage his frustration. The past couple days have gotten better at the bus stop. This morning he still went through the motions of saying "I will bring nothing!" But then picked up his book and carried it to his seat.
But back to Tuesday morning: after the sad incident on the bus, Thomas and I drove on to L's house, only to be greeted by L in tears, saying she was having a gall bladder attack and needed to go to the emergency room! She ended up being admitted to the hospital and having surgery to remove a stone that had traveled, as well as remove her gall bladder.
So I unexpectedly had the rest of the day off on Tuesday, and presumably the rest of the week. It's not a bad thing to have to take time off work, but it's worrisome when your "co-mother" (I think I'm going to start calling her that!) is in terrible pain!
I always feel so strange when I'm home like that- torn between wanting to do stuff (go to the park, make a craft...) and wanting to veg out on the couch and eat Halloween candy. I mostly did the latter, although Thomas and I did play some legos and Bakugan. When I talked to my dad Wednesday and told him what was going on, he offered to have Tommy stay at their house for a few days, and we took him up on that offer.
I don't like that Tommy has been gone so much lately (he was at their house 2 weekends ago so we could go to a football game, and then spent the night at a friend's house last weekend), but he did call last night saying he missed us, so I guess he's not ready to leave home yet :-)
Sunday, November 02, 2008
Halloween 2008
It's been quite a busy week around here. Some neighborhoods in our area (including ours) had trick-or-treat night on Thursday, the 30th, while others went ahead and had in on the (more logical?) day: Friday. The boys had parties at school, and were also invited to a couple birthday parties this weekend!
So it was a full week of carving pumpkins, shopping for presents, getting in and out of costumes, and gathering SO MUCH CANDY. Too much candy, that my children have already forgotten is here and I, unfortunately, have not forgotten, but keep eating it...
The first video was taken before we left to trick-or-treat. Henry is describing his costume (it has a waistband!)- sorry I idiotically turned the camera sideways to try to capture the whole look. You'll also see Spiderman dart back and forth.
The second little clip I wanted to tell you about: last year there was a house that was scaring everyone. Even the little kids, which ticked me off. This year we came up the opposite side of the street, and I saw that they were again dropping something down from the roof of the porch when the kid approached, and screaming. So I started warning the kids: "that's the house that scared you last time."
If they had asked to just skip that house, that would have been fine. But, you know, God forbid you walk past one house that's giving out candy. Henry was determined to trick-or-treat there. So, first I loudly announced "this is the house that scared you last year", hoping that the teenagers on the porch would get the hint. Then I suggested that Henry get out his sword and use it to defend himself against the scary house. Of course, my very noble knight had trouble unsheathing his sword without some assistance. But once I helped him get the sword out, he waved it valiantly, and proceeded up to the house.
I was so happy because the kids on the porch played right along! "Oh no! Don't come any closer! Here- just take your candy and go!!!" they shouted, and threw 2 pieces of candy out onto the sidewalk. Of course we made a big deal out of how Henry scared the scarers. And that's what he's telling you in that little video.
Kate was giving out candy at her grandma's house (her mom's mom-she lives near us), so Bill took the boys over there to trick-or-treat and see their sister.
Friday night Henry had a birthday party to attend, so I took Tommy trick-or-treating in his babysitter's neighborhood. A very cool older kid (L's nephew- 2nd grader) went with us, and ended up inviting Tommy to SPEND THE NIGHT. After I nearly passed out at the thought, we decided to give it a try. Tommy has been away from home many times- but always at Grandma & Grandpa's. We tried it once before with a friend and it didn't go so well- I ended up having to go pick him up.
I slept with my cell phone next to my pillow all night, but of course everything went fine. We were all meeting at a indoor play place the next day for a birthday party, so it really worked out very well.
Henry did well at the party Friday night, as well as the party yesterday afternoon. Although he really wanted to dance around out in the video game area, watching and playing games, he agreed to wait in the party room until the appropriate time. This was huge- I didn't have to ignore the whole party and stand out in the game room with Henry for an hour. Huge. He attempted lots of games with good spirits, and I was just really proud of him. Both my sweet boys are growing up into such nice kids.
Thursday, October 23, 2008
fantasy
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.
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.
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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