I posted quite a while ago (on Valentine's day- I can't figure out how to do the link) about songs that make you smile. Today I heard a great one on my way to work: Ball and Chain by Social Distortion. (You can click on the link to watch a video- I didn't find a link to just hear the song.)
Bill is out of town this week. I like to think that I do everything around the house anyway, so what's the big deal if he's gone? But I guess he helps more than I realize, because yesterday was very stressful!
-Tommy isn't feeling well, and is VERY whiny. I took him to the doctor on my lunch hour, and his ears are ok, it's just a virus.
-Henry is really freaked out, (I mean, dysregulated :-) by:
a.) school ending
b.) the Easter Seals program hasn't started yet, so his big sister is watching him this week. She is really doing great with him, and they have fun together, but it's just something DIFFERENT, you know?
c.) Daddy is gone. Yesterday Henry told Kate "Daddy will be home in no time." (This is a mantra that he often repeats when someone is away at work or whatever.) Kate told him that Bill will be home Friday night. Henry replied "today is Thursday!"
-Kate had a youth group activity last night in an opposite area of town. All three of us had to drop her off and pick her up- both boys whining in my ears the entire time. By the time we got home Kate could tell that I was ready to lose it, so she helped the boys clean up their room and get ready for bed, while I sat on the couch and ate some Dairy Queen (brownie batter blizzard) and drank a glass of wine! Thanks, Kate.
This morning I dropped Tommy off, drove through Starbucks and splurged on a half-decaf coffee (I know, I'm a mom gone wild in my minivan), and then the Social Distortion song came on. It was just what I needed to hear, for some reason. I turned it up really loud and sat in the parking lot at work, singing along in my very loud off-key way.
Maybe I just need a moment like that to make me feel like I actually still have some freedom of choice in my life. Some independence, even if it's as meager as sitting alone and looking like a dork as I sing along.
I thought about my friend Sal, and others who ride public transportation to and from work. When is their opportunity to sing at the top of their lungs?
Tuesday, June 13, 2006
Monday, June 12, 2006
you want me to tell you...
Henry has been asking some tough questions lately. And I like what they reveal about his development.
It's been a year or more since Henry started describing the way characters in his favorite movies were feeling: "Simba is saaad" he would say, moving to get right in front of my face and look me in the eye. I was happy with that development because, for a long time, Henry ran away from any discussion of unpleasant emotions. He ran away, literally and figuratively- in speech therapy they would show him those posters with a series of emotion faces and he would cry and yell and refuse to look at them.
So it was good when Henry became able to label emotions and identify how someone was feeling. But now I realize something was missing. (I have not been trained in RDI, but I think this is the kind of missed link one is getting at with that program- comments are welcome here on this subject. Teach me!)
Over the weekend as he watched some favorite Disney movies, Henry again would comment "Simba is sad." And I would agree (Henry always wants you to repeat back what he has said. If you don't, he continues to repeat it until you do.)
But then Henry said "you want me to tell you why he is sad?" (His pronoun use has become much better, especially in routine situations. But in a situation like this, where he is venturing into new territory, he lapses back into his "backwards" talk.)
He also asked about Aurora (Sleeping Beauty): "you want me to tell you why she is sad?"
Those are tough questions kid. Simba is sad because his father is dead and Simba thinks he is responsible for his father's death. I'd really rather not explain that. Aurora is sad because she just found out that, although she just met a handsome stranger in the woods, she is being forced to marry a prince she's never met. (Sleeping Beauty, by the way, has to be the dumbest and most offensive of the Disney movies.)
So, although he has long been able to identify someone as "sad", he has never understood WHY they are sad. It's pretty hard to find your way through life if you're missing that much background information. What is a good way for me to explain these things to him?
(It's also interesting that he asks questions in such a convoluted way lately. It shows me how much his mind is really working! He will look out the window into the back yard and say "you want me to tell you what I did with the slip-n-slide?" Such a more complicated question than "where is the slip-n-slide?")
It's been a year or more since Henry started describing the way characters in his favorite movies were feeling: "Simba is saaad" he would say, moving to get right in front of my face and look me in the eye. I was happy with that development because, for a long time, Henry ran away from any discussion of unpleasant emotions. He ran away, literally and figuratively- in speech therapy they would show him those posters with a series of emotion faces and he would cry and yell and refuse to look at them.
So it was good when Henry became able to label emotions and identify how someone was feeling. But now I realize something was missing. (I have not been trained in RDI, but I think this is the kind of missed link one is getting at with that program- comments are welcome here on this subject. Teach me!)
Over the weekend as he watched some favorite Disney movies, Henry again would comment "Simba is sad." And I would agree (Henry always wants you to repeat back what he has said. If you don't, he continues to repeat it until you do.)
But then Henry said "you want me to tell you why he is sad?" (His pronoun use has become much better, especially in routine situations. But in a situation like this, where he is venturing into new territory, he lapses back into his "backwards" talk.)
He also asked about Aurora (Sleeping Beauty): "you want me to tell you why she is sad?"
Those are tough questions kid. Simba is sad because his father is dead and Simba thinks he is responsible for his father's death. I'd really rather not explain that. Aurora is sad because she just found out that, although she just met a handsome stranger in the woods, she is being forced to marry a prince she's never met. (Sleeping Beauty, by the way, has to be the dumbest and most offensive of the Disney movies.)
So, although he has long been able to identify someone as "sad", he has never understood WHY they are sad. It's pretty hard to find your way through life if you're missing that much background information. What is a good way for me to explain these things to him?
(It's also interesting that he asks questions in such a convoluted way lately. It shows me how much his mind is really working! He will look out the window into the back yard and say "you want me to tell you what I did with the slip-n-slide?" Such a more complicated question than "where is the slip-n-slide?")
Thursday, June 08, 2006
and now, back to your regular programming
My husband hopes that I don't hurt myself getting down off my soapbox. So I'll be very careful...
To update on the past couple posts:
-I decided to go with Barnes & Noble gift cards for the teachers, along with a little candle from the Bath & Body Works sale right next door. I was tempted to get gift certificates to a local ice cream place (mostly because that's what sounded really good to me) but decided B&N was safer- you can get not only books, but music or movies...
-Bill and I had a date Friday night, in honor of our anniversary. We walked to a neighborhood restaurant for a slightly fancy dinner and wine. Then we walked a few doors down to that ice cream place I just mentioned. Finally, we walked to the local little movie theater to see The DaVinci Code. What a fun night. I hope this doesn't sound terrible, but sometimes when we have a great time alone like that, it makes me extra irritated by our "real life" with kids. Maybe that was a reason for my mood Saturday?
Another reason I get frustrated with an issue like Henry going outside is that I wonder- "what is the best for my child?" It just seems like it's a mom's job to encourage her child to go outside. But it's a weekend, and the rest of us are doing things that bring us pleasure. Is it wrong to let Henry do what brings him pleasure? What is my obligation here as his mother? To force him to do something because it is "what kids are supposed to do"?
-I have not been "pissed off mom" ever since Saturday. I have still had my moments, but I have tried (as Kyra wisely suggested) to acknowledge when I'm being grumpy/irrational and apologize.
This morning I tried to get Henry to write his name on the gift tags for his teachers. Don't ask me why I go through that routine with him when I KNOW that he is going to refuse and get upset. The thing that makes it even worse is that his 2-year-old brother chimes in "yeah, Bubba. You write your name!" This makes Henry mad. Then, when I say "Tommy, you don't need to get involved with this. Just eat your breakfast" and Tommy starts crying, it makes everything worse. I ended up saying "you are both making me really mad" and throwing down the gift tags! Mature. But I didn't say what I wanted to say, which was "how damn hard is it to write your name on this gift for your teacher?!" I guess that's the thing- it is really damn hard for Henry.
As we walked out to the car for his ride to school, he told me that he doesn't want to go to the new school. I think he is really worried about that. And it's hard for me to comfort him, because I'm worried about it too. This year went so well. It's hard to start over.
Tuesday, June 06, 2006
it's love, stupid
“We hold these truths to be self evident: that all men are created equal; that they are endowed by their Creator with certain inalienable rights; that among these are life, liberty, and the pursuit of happiness”-The Declaration of Independence
I don't usually venture into hot political topics here, but this really has me steamed. I am a partner in a traditional, opposite-sex, marriage, and I really don't see what all the fuss is about. I do not feel threatened by people of the same sex who choose to marry. Am I missing something? Are they taking something from the rest of us? Getting some kind of privilege that the rest of us aren't? (Like a big tax break or a government contract?)
I have two younger brothers. They are both smart, sweet, clever, sensitive, creative, talented, funny and breath-takingly handsome. Each one shares his home and his life with a special person that he cares about. Neither one is married. One lives here in the US with a woman. The other lives in Australia with a man.
How many people in this world go through life trying to find someone to love and who will love them in return? I know I sound like a bleeding-heart sap, but why do we care who an adult decides to spend his or her life with? As long as no one is being hurt, I say our society needs all the love it can get.
Homosexuals are our co-workers, our friends, our family. They are members of our churches (yes, there is a gay couple who attends my church) and parents to our children's friends. Allow them to become even better members of society by acknowledging their relationship. Who does it hurt?
Or how many more wonderful Americans will we lose to Australia? :-)
I don't usually venture into hot political topics here, but this really has me steamed. I am a partner in a traditional, opposite-sex, marriage, and I really don't see what all the fuss is about. I do not feel threatened by people of the same sex who choose to marry. Am I missing something? Are they taking something from the rest of us? Getting some kind of privilege that the rest of us aren't? (Like a big tax break or a government contract?)
I have two younger brothers. They are both smart, sweet, clever, sensitive, creative, talented, funny and breath-takingly handsome. Each one shares his home and his life with a special person that he cares about. Neither one is married. One lives here in the US with a woman. The other lives in Australia with a man.
How many people in this world go through life trying to find someone to love and who will love them in return? I know I sound like a bleeding-heart sap, but why do we care who an adult decides to spend his or her life with? As long as no one is being hurt, I say our society needs all the love it can get.
Homosexuals are our co-workers, our friends, our family. They are members of our churches (yes, there is a gay couple who attends my church) and parents to our children's friends. Allow them to become even better members of society by acknowledging their relationship. Who does it hurt?
Or how many more wonderful Americans will we lose to Australia? :-)
Sunday, June 04, 2006
confession
I got impatient with Henry yesterday. I don't mean to announce that as if it's the first time that's ever happened (or the last), but I do feel sad about it.
Yesterday we had perfect weather. Blue sky, cool in the morning but warming up to 80 by the afternoon. Thomas, Bill and I were in and out of the house all day.
Henry doesn't like to do anything outside. When he was 2-3 he would want to walk around the neighborhood and look at cars and have the same standard conversation about certain houses and landmarks. He also used to like to sidewalk chalk, although it would just be him dictating to me what he wanted me to draw. But now he just likes to stay inside. He will play on the playground when we visit one, but just playing outside in the yard holds zero interest for him.
Yesterday I suggested a trip to the library and then the grocery store, as a way to get him out of the house. Those both went well. But once we got home he just wanted to watch a DVD or lay all his crumpled and well-loved "Disney papers" all over the floor. Chicken Little seems to have replaced Lady and the Tramp as his current favorite subject, and he carries around two Chicken Little sticker books, a Disney Magazine with Chicken Little on the cover, the Chicken Little book on CD book and some printouts from the Disney website.
Anyway, last night Bill was cooking out, and I wanted to sit outside with him. Tommy was coming in and out of the house, and Henry was in the house. Henry kept asking me to find one more of his papers, and then a particular Star Wars book that was my brother's, (from back when Star Wars, Episode IV was the FIRST Star Wars.) I couldn't find the book anywhere and he kept perseverating on it. I finally just told him (in a not very nice way) "Henry, it's nice outside and I want to go outside- why do you have to stay in here with all these movies and papers spread all over the floor?!" He just looked at me and said "NO!"
When I think about it rationally, he is probably feeling extra dysregulated. The end of the school year is coming, and he knows that he'll be going to a different school next year. Also, his nose was running all day long yesterday, and the Claritin I gave him didn't seem to help.
It's just hard, as he gets older and more communicative. Sometimes I feel like I should be able to have a "rational" conversation with him in which I say "hey, it's nice outside. Let's turn off the movie and go outside." And he says "ok mommy."
(But lots of times I wish I could have a rational conversation like that with my teenager also, and it's not so easy.)
It's not all about autism. It's just about being a mommy. I was frustrated with Tommy yesterday too, because he wouldn't stop climbing on me and wanting juice, but NO not THAT juice, a different juice. Etc. etc.
Bill gave them a bath and I tried to put them to bed early. We read a book together in Henry's bed. But both boys kept whining that they wanted a different book or that "Bubba push me." Bill could hear us on the monitor and he said it didn't sound like me when I said "both of you need to be quiet or we're not reading any book."
I don't want to be that mom- the one who's pissed off and short with her kids all the time.
So that's why I'm going to take a walk this morning- some time for just me. Maybe today will be better.
Yesterday we had perfect weather. Blue sky, cool in the morning but warming up to 80 by the afternoon. Thomas, Bill and I were in and out of the house all day.
Henry doesn't like to do anything outside. When he was 2-3 he would want to walk around the neighborhood and look at cars and have the same standard conversation about certain houses and landmarks. He also used to like to sidewalk chalk, although it would just be him dictating to me what he wanted me to draw. But now he just likes to stay inside. He will play on the playground when we visit one, but just playing outside in the yard holds zero interest for him.
Yesterday I suggested a trip to the library and then the grocery store, as a way to get him out of the house. Those both went well. But once we got home he just wanted to watch a DVD or lay all his crumpled and well-loved "Disney papers" all over the floor. Chicken Little seems to have replaced Lady and the Tramp as his current favorite subject, and he carries around two Chicken Little sticker books, a Disney Magazine with Chicken Little on the cover, the Chicken Little book on CD book and some printouts from the Disney website.
Anyway, last night Bill was cooking out, and I wanted to sit outside with him. Tommy was coming in and out of the house, and Henry was in the house. Henry kept asking me to find one more of his papers, and then a particular Star Wars book that was my brother's, (from back when Star Wars, Episode IV was the FIRST Star Wars.) I couldn't find the book anywhere and he kept perseverating on it. I finally just told him (in a not very nice way) "Henry, it's nice outside and I want to go outside- why do you have to stay in here with all these movies and papers spread all over the floor?!" He just looked at me and said "NO!"
When I think about it rationally, he is probably feeling extra dysregulated. The end of the school year is coming, and he knows that he'll be going to a different school next year. Also, his nose was running all day long yesterday, and the Claritin I gave him didn't seem to help.
It's just hard, as he gets older and more communicative. Sometimes I feel like I should be able to have a "rational" conversation with him in which I say "hey, it's nice outside. Let's turn off the movie and go outside." And he says "ok mommy."
(But lots of times I wish I could have a rational conversation like that with my teenager also, and it's not so easy.)
It's not all about autism. It's just about being a mommy. I was frustrated with Tommy yesterday too, because he wouldn't stop climbing on me and wanting juice, but NO not THAT juice, a different juice. Etc. etc.
Bill gave them a bath and I tried to put them to bed early. We read a book together in Henry's bed. But both boys kept whining that they wanted a different book or that "Bubba push me." Bill could hear us on the monitor and he said it didn't sound like me when I said "both of you need to be quiet or we're not reading any book."
I don't want to be that mom- the one who's pissed off and short with her kids all the time.
So that's why I'm going to take a walk this morning- some time for just me. Maybe today will be better.
Thursday, June 01, 2006
random notes from the sauna
Yesterday was my 9th wedding anniversary. I had hoped to scan a photo and share it, but it just didn't happen... (Thankfully our wedding day was not as horrifically hot as the past week has been.) On May 31, 1997, a gentle rain fell throughout the day and I married my best friend in a shelter house in front of a fire. Every day since has been better than the last. Happy Anniversary husband. I love you.
______________
We have just returned from an end-of-the-year trip to the zoo with Henry's class, and are cooling off, each on separate floors of the house. (Not temperamentally cooling off, but physically cooling off.)
The zoo trip was fun. I love Henry's teacher and aides. One interesting observation though: there are only 4 kids in Henry's class. I have only ever seen one other parent. This father was there for "meet the teacher" day in the fall, was at the fall party I went to, and his IEP meetings always seem to be scheduled before or after ours. This dad clearly has an ASD, and I think he's the first adult I've ever met who seems to have full-blown autism. Every time we see him, he asks us where we live, how much we paid for our house, why we decided to live here, whether we live near the Jewish Center (we do), whether we belong to the Jewish Center (we don't)... you get the idea.
This guy is kind of irritating (I'm sorry if that offends anyone, but hey, Henry's constant inappropriate questions irritate me sometimes too.) But today I realized that at least he really seems to take an interest in his kid's life. He takes time off from work (as a computer programmer) for these events and really makes an effort to talk to the other kids and get to know the adults too. Where were the other 2 kids' parents? I know it's not always easy to get off work (my vacation time is practically at a negative balance), but I have not seen them at anything throughout the year.
On another subject: I was proud of Henry at Target this weekend. He picked out 2 DVDs to look at. I said that he could look at them while we walked around the store, but could only pick one to take home (praying that he would choose Chicken Little rather than Power Rangers.) We talked about it as we shopped, with him always saying "I want to take TWO movies home mommy!" Like, he couldn't believe I was having so much trouble understanding that. Anyway, we got to the checkout and I was expecting a mammoth meltdown. I asked "which movie do you want the most?" And he calmly answered "Chicken Little." I said "OK, then we'll leave Power Rangers here" and he said "OK." And that was the end of it!
We also attended a Memorial Day parade last weekend. Henry protested that he didn't want to go, which surprised me, because he has always enjoyed parades. And he did enjoy it once it began, but the anticipation of the noise and all the people seemed to upset him beforehand. It didn't help that I misunderstood the time the parade started and got us there an hour early. We bought Timbits from Tim Horton's and then the cottonwood flying all around stuck to our sticky hands and sweaty faces. Summertime is so gross.
______________
We have just returned from an end-of-the-year trip to the zoo with Henry's class, and are cooling off, each on separate floors of the house. (Not temperamentally cooling off, but physically cooling off.)
The zoo trip was fun. I love Henry's teacher and aides. One interesting observation though: there are only 4 kids in Henry's class. I have only ever seen one other parent. This father was there for "meet the teacher" day in the fall, was at the fall party I went to, and his IEP meetings always seem to be scheduled before or after ours. This dad clearly has an ASD, and I think he's the first adult I've ever met who seems to have full-blown autism. Every time we see him, he asks us where we live, how much we paid for our house, why we decided to live here, whether we live near the Jewish Center (we do), whether we belong to the Jewish Center (we don't)... you get the idea.
This guy is kind of irritating (I'm sorry if that offends anyone, but hey, Henry's constant inappropriate questions irritate me sometimes too.) But today I realized that at least he really seems to take an interest in his kid's life. He takes time off from work (as a computer programmer) for these events and really makes an effort to talk to the other kids and get to know the adults too. Where were the other 2 kids' parents? I know it's not always easy to get off work (my vacation time is practically at a negative balance), but I have not seen them at anything throughout the year.
On another subject: I was proud of Henry at Target this weekend. He picked out 2 DVDs to look at. I said that he could look at them while we walked around the store, but could only pick one to take home (praying that he would choose Chicken Little rather than Power Rangers.) We talked about it as we shopped, with him always saying "I want to take TWO movies home mommy!" Like, he couldn't believe I was having so much trouble understanding that. Anyway, we got to the checkout and I was expecting a mammoth meltdown. I asked "which movie do you want the most?" And he calmly answered "Chicken Little." I said "OK, then we'll leave Power Rangers here" and he said "OK." And that was the end of it!
We also attended a Memorial Day parade last weekend. Henry protested that he didn't want to go, which surprised me, because he has always enjoyed parades. And he did enjoy it once it began, but the anticipation of the noise and all the people seemed to upset him beforehand. It didn't help that I misunderstood the time the parade started and got us there an hour early. We bought Timbits from Tim Horton's and then the cottonwood flying all around stuck to our sticky hands and sweaty faces. Summertime is so gross.
Friday, May 26, 2006
My son, the model; Summertime; and a question
I have a friend who faithfully gets these elaborate photos taken of her daughter. Last time she asked if Tommy would come along too. (I won't share any of the photos of them together, as I haven't asked for her permission, but they are very cute.) Are these great or what?! I'm so glad she invited us along, because I would sure never pay this much for photos, but I'm glad to have them.
(That's my leg that he's leaning against.)
___________________________________
Mamaroo asked about our summer plans. For the third summer in a row, Henry will be attending the Easter Seals summer program.
His first summer there was wonderful. Last summer was pretty rough (he was coming off of his really bad preschool experience.) I am not sure what to expect for this summer, but will of course plan for the worst, hope for the best.
The program is open to all sorts of kids with disabilities. So you have children who are blind, physically disabled, and various degrees of neurological and behavioral issues. The problem, for Henry, is that some of the kids tend to be loud, scream unexpectedly, try to run out of the room, etc. That level of noise and confusion is very dysregulating for Henry. (And would be for many of us!)
One wonderful constant has been the teaching staff. He will have the same young woman (a college student, I'll call her Miss S) as a teacher again this summer. I got in touch with her through e-mail this week and gave her Ms. H's phone number and e-mail address. Ms. H said that she'll be happy to help with suggestions and will be available throughout the summer if any problems come up that she could help with. I'm hoping that Miss S will have time to visit Henry's classroom in the next couple weeks before school is out, to see how they do things there.
Thomas will continue to go to L's house for the summer. She will take 2 weeks off in July, however, which means that I'll take 2 weeks off in July.
Kate will be getting her first job this summer, and will be busy with basketball camps and leagues, maybe volleyball too.
So that's the plan for the summer. I have a question for all the mommies and teachers out there: what is a good teacher gift that is useful and appreciated? Especially since we know that Henry will be in a different class next year, I'd like to get something nice (not necessarily expensive :-) for his teacher, and maybe the aides in his class and the woman who drives him to and from school.
Monday, May 22, 2006
(#75)
When Bill's schedule permits, he meets Henry at home after school. (More often his schedule does not permit, and I meet Henry at home.) Friday was a daddy day.
They called me at work to check in, and I asked Henry, "how was your day?" I expected him to say "it was super good!" Or, "I had gentle hands almost the entire day." Or, "I played Nick Jr. on the computer."
Instead he replied "I got a gluurb."
"A what?" I asked.
(Louder) "A gluuuuurb!" (Henry does that thing that some Americans do when speaking to a non-English speaker: just says it louder and more slowly- thus making his words less intelligible, rather than more.)
"A glob?"
(Exasperated pause...) "A wuuuulrd"
"A word?"
"A wuuuulrd!"
"I'm sorry buddy, I'm not understanding your words..."
Then, finally, he shouted "the earth!"
This globe/ball had been waiting for him in the mail. We got it with our new subscription to National Geographic Kids. It was not something that I anticipated him talking about. But once he tried a third way of getting his point across, I was so excited to finally figure it out! I was even more excited when I found out that he had been reading the names of the continents and countries to Bill.
Henry did more reading this weekend. He was looking at a cookbook and sounding out a surprising number of words- things like "country apple pie". Sometimes he thinks he would rather work in a bakery than be a con/destruction worker.
Also- some good news/bad news:
Right now Henry's (super-excellent-terrific) classroom is located in a different school district, and he is transported there. We just found out that they will be opening a STACK classroom in OUR district next year. It's one of those old school buildings where the elementary, middle school and high school are all connected on one long block. So it will be like he's going to school with his big sister!! Potentially she'll be able to get him home after school at least some of the time, and I won't have to leave work every day from 2:30-3:30. It will be so much easier for me to have contact with his teachers and participate in school events. I mean, it's 80% a good thing.
The 20% bad is just this: he's had so much success this year, and we love his teacher so much. I am just afraid to give that up and start over. And it makes me wonder: how many other times are we going to have to start over in his educational career?
They called me at work to check in, and I asked Henry, "how was your day?" I expected him to say "it was super good!" Or, "I had gentle hands almost the entire day." Or, "I played Nick Jr. on the computer."
Instead he replied "I got a gluurb."
"A what?" I asked.
(Louder) "A gluuuuurb!" (Henry does that thing that some Americans do when speaking to a non-English speaker: just says it louder and more slowly- thus making his words less intelligible, rather than more.)
"A glob?"
(Exasperated pause...) "A wuuuulrd"
"A word?"
"A wuuuulrd!"
"I'm sorry buddy, I'm not understanding your words..."
Then, finally, he shouted "the earth!"
This globe/ball had been waiting for him in the mail. We got it with our new subscription to National Geographic Kids. It was not something that I anticipated him talking about. But once he tried a third way of getting his point across, I was so excited to finally figure it out! I was even more excited when I found out that he had been reading the names of the continents and countries to Bill.Henry did more reading this weekend. He was looking at a cookbook and sounding out a surprising number of words- things like "country apple pie". Sometimes he thinks he would rather work in a bakery than be a con/destruction worker.
Also- some good news/bad news:
Right now Henry's (super-excellent-terrific) classroom is located in a different school district, and he is transported there. We just found out that they will be opening a STACK classroom in OUR district next year. It's one of those old school buildings where the elementary, middle school and high school are all connected on one long block. So it will be like he's going to school with his big sister!! Potentially she'll be able to get him home after school at least some of the time, and I won't have to leave work every day from 2:30-3:30. It will be so much easier for me to have contact with his teachers and participate in school events. I mean, it's 80% a good thing.
The 20% bad is just this: he's had so much success this year, and we love his teacher so much. I am just afraid to give that up and start over. And it makes me wonder: how many other times are we going to have to start over in his educational career?
Friday, May 19, 2006
progress reports
Bill and I have noticed a strange phenomenon, thanks to the birth order of our children: because our autistic child was born first, we delighted in his development. We were pretty much serenely oblivious to Henry's developmental delays. (It helped that the pediatrician kept saying that he was fine.) But now, as we watch our NT toddler grow, we are completely enchanted by his development.I think that, for many families, when their second child has an ASD, they are likely to be noticing all the things that infant/toddler is not doing: not using imaginary play, not participating in reciprocal conversations, not expressing his wants and needs verbally, not showing interest in other children.
For us, the opposite is true. Lately we find ourselves laughing at Thomas' antics and amazed by his verbal abilities. It's like, rather than thinking that Henry had a disability at the time, now we think that Thomas has some kind of uber-ability!
Here are some of the fun things he has been doing lately:
-He is enjoying his toddler gymnastics class. He acts pretty shy and quiet during class, but then one night at home he started rolling all over the floor and couch, saying "I doing dymnastics! Hey, guys, watch me- I doing dymnastics. Guys, guys, tan you tlap? Tan you tlap when I do my gymnastics?" Wanting us to applaud after each stunt.
-One day we were waiting out front for a friend. Tommy noticed the neighbor across the street and said "there's Frank."
I said "yes, there's Frank. It looks like he's cutting up a branch. Hmmm, it looks like his tree is... well, no, maybe it's just late to bud." (I was just thinking out loud, at first I thought one of his trees was dead, but then decided not.)
Tommy looked at me and said "mommy, what you talking about?!" As if I was just a babbling idiot.
-He likes to pretend that he is a baby, and pretends to talk baby talk. He'll say "I the baby and you the mom and daddy the dad." OK Tom, that's not a real stretch for us. He will pretend that the ketchup bottle from the play food is his baby bottle.
-One day, out of the blue, he said "I Swiper." He grabbed my slipper and threw it and said "you'll never find your slipper now!" (For readers who aren't familiar with Dora the Explorer, that's what the bad guy Swiper does.)
That's just normal kid stuff. But Henry never did things like that. So when Tommy pretends to be Swiper? That totally blows my mind.
_________
Last week we had Henry's IEP meeting for next year. He will continue to work on goals that will allow him to succeed in the inclusion classroom. Aggression was our big focus this year. Now that it has been managed pretty well, they are concentrating on a couple specific things: Henry's reactions when other children are being redirected (i.e. disciplined), and learning to interact with his peers- initiating play and taking turns with less teacher involvement.
A couple exciting bits of news:
1. Henry's IEP doesn't have any specific academic goals because he is at or above grade level and will continue with the 1st grade curriculum next year.
2. They hope to increase his inclusion to up to 80% of his day next year. I actually half-joked during the meeting that this news made my stomach upset. Inclusion is not much of a goal for me right now, and I don't want to get my hopes up that Henry will attend the regular class next year and be "just like the rest of the kids." I mean, I know he may never be. But it seems like as long as he's in a "special" class, then that's easier to remember.
But if he's really part of the first grade class next year, I'm afraid I'll be disappointed if he doesn't make some friends and start getting invited to birthday parties, etc. etc. Or if it doesn't work out well and we have to start scaling back, then I'll be disappointed.
I just need to not have any expectations, and see what happens.
Wednesday, May 17, 2006
more mother's day
(I told you, we've got this digital camera now!)
Henry came home from school yesterday with a present for me. I was genuinely surprised and thrilled. Because he had missed the 2 weeks of school before Mother's Day, I did not expect any sort of handmade wonderful treat. But his teacher is so terrific...
So first, the card. Clearly they only provided "girly" stickers for him to use. His stickers of choice to decorate anything would be Power Rangers or some other superheroes. The front said "Happy Mother's Day" written in teacher handwriting, but you can see that he wrote his own name on the inside:
Then the gift. The funny thing is that he ripped open the tissue paper with excitement. Even though he should have known what was inside!
It is a beautifully framed Henry hand print:
Here is a photo of my beautiful boys, ready to leave for Grandma's on Sunday morning. This photo is a keeper, as they are both smiling nicely and looking at the camera, and Henry's eyes aren't all scrunched up.
Henry came home from school yesterday with a present for me. I was genuinely surprised and thrilled. Because he had missed the 2 weeks of school before Mother's Day, I did not expect any sort of handmade wonderful treat. But his teacher is so terrific...
So first, the card. Clearly they only provided "girly" stickers for him to use. His stickers of choice to decorate anything would be Power Rangers or some other superheroes. The front said "Happy Mother's Day" written in teacher handwriting, but you can see that he wrote his own name on the inside:
Then the gift. The funny thing is that he ripped open the tissue paper with excitement. Even though he should have known what was inside!It is a beautifully framed Henry hand print:
Here is a photo of my beautiful boys, ready to leave for Grandma's on Sunday morning. This photo is a keeper, as they are both smiling nicely and looking at the camera, and Henry's eyes aren't all scrunched up.
Sunday, May 14, 2006
mother's day
I've been thinking a lot lately about this business of being a mom. It started 2 weeks ago when Henry was so sick. I realized that it's a mother's job to interpret what the pediatrician is telling her- when to believe it and when to push for something else- when to say "ok, but..." when being advised to wait another 24 or 48 hours. I'm not very good at that. I want to be able to trust my pediatrician blindly. But I've learned, in 6 1/2 years of being Henry's mother, that the doctors don't always know a whole lot more than you do once you've read the American Academy of Pediatrics book. Sometimes you have to dramatize the illness to get attention. And I don't usually go for the drama in my life.
Then at the Emergency Room I had a few hours to think about all the things we do as moms. All the tasks you don't realize that you're signing up for when you say "hey, let's have a baby." Things like catching barf in your shirt because that's easier to clean up than the carpet. Things like holding your child down so doctors can examine him. Things like forcing your 6-year-old to drink out of a sippy cup like it's a bottle because he's so sick.
At a gathering at our house last weekend, a friend said to me "why doesn't anyone tell you how much motherhood sucks?" I kind of laughed her comment off, saying "oh yeah, if anyone told us how hard it was, no one would ever have children!" But, without going into this woman's personal situation, I believe that she really meant what she said: she thinks motherhood sucks. (Forget for a moment that I hate that word.) It really upsets me to know that anyone would feel this way. God knows that I am far from being an exemplary mother (I just put my boys to bed without a bedtime story or brushing their teeth so that I could get back on the computer) but I love being a mother. Every single minute of it. Even on my worst day or my kids' worst days I would never say that motherhood stinks (that is a word that I prefer to sucks.) Even a day spent in the Emergency Room is a day spent doing the most important job there is: helping a small person grow into the best big person he can be.
I can also say, after the past 2 weeks, that I tip my hat to all stay-at-home moms. It was never in the cards for us, financially, for either Bill or I to stay home. But after this week, I wonder if I could even handle it? I feel like I started 10 different projects (I have a lot of energy in the mornings) but didn't finish any. The TV was on all day long, and I ate like a pig (we had a lot of leftovers from Kate's birthday/confirmation bash last weekend.) The situation was a little unusual because Henry was sick and needed to rest- I suppose I would have done more active stuff outside if that hadn't been the case. But I commend all you moms who are with your kids all day long and manage to get so much done.
Today was a good day. We visited my parents in Dayton (about an hour and a half away). My brother was there visiting from Washington, DC. My mom, brother and I went to the Princess Diana exhibit at the Dayton Art Institute. I have been a Diana-phile since the royal wedding in 1981. I was 11 then and highly susceptible to the whole fairy tale thing. I got up at 4 am or something to watch the wedding and then went on to collect coffee table books about Diana and her kids. The year she died (1997) was the same year I got married, and I again got up at 4 am to watch her funeral. I sat on the couch under a blanket and sobbed. I know that's unbelievably corny. But I just couldn't bear the sad reality of her life, compared to the fairy tale that we all thought we were watching back in 1981. At the same time, I realized how wonderful my every-day normal person life was, compared to her life of palaces and designer clothes.
So I made mom and Christian go to this exhibit today and it was kind of a disappointment. We realized afterwards that the exhibit was put on by her family (the Spencers). So they were only able to show items from her childhood and then from her death (like hundreds of condolence books that were signed by people all over the world). The highlight for me was her wedding gown. But you walked out of that exhibit room and directly into one about her funeral. Nothing about her life in between. I guess that stuff is all owned by the royal family. There were very few photos of her sons. And my brother pointed out the irony of visiting a show about Diana on Mother's Day: her kids don't have their mother anymore.
Well, it's time to do another mommy job: wash Thomas' sheets. He is sleeping in our bed right now, because last night I found him asleep with his pjs unzipped, his diaper undone, and his bed full of pee. Why?
Then at the Emergency Room I had a few hours to think about all the things we do as moms. All the tasks you don't realize that you're signing up for when you say "hey, let's have a baby." Things like catching barf in your shirt because that's easier to clean up than the carpet. Things like holding your child down so doctors can examine him. Things like forcing your 6-year-old to drink out of a sippy cup like it's a bottle because he's so sick.
At a gathering at our house last weekend, a friend said to me "why doesn't anyone tell you how much motherhood sucks?" I kind of laughed her comment off, saying "oh yeah, if anyone told us how hard it was, no one would ever have children!" But, without going into this woman's personal situation, I believe that she really meant what she said: she thinks motherhood sucks. (Forget for a moment that I hate that word.) It really upsets me to know that anyone would feel this way. God knows that I am far from being an exemplary mother (I just put my boys to bed without a bedtime story or brushing their teeth so that I could get back on the computer) but I love being a mother. Every single minute of it. Even on my worst day or my kids' worst days I would never say that motherhood stinks (that is a word that I prefer to sucks.) Even a day spent in the Emergency Room is a day spent doing the most important job there is: helping a small person grow into the best big person he can be.
I can also say, after the past 2 weeks, that I tip my hat to all stay-at-home moms. It was never in the cards for us, financially, for either Bill or I to stay home. But after this week, I wonder if I could even handle it? I feel like I started 10 different projects (I have a lot of energy in the mornings) but didn't finish any. The TV was on all day long, and I ate like a pig (we had a lot of leftovers from Kate's birthday/confirmation bash last weekend.) The situation was a little unusual because Henry was sick and needed to rest- I suppose I would have done more active stuff outside if that hadn't been the case. But I commend all you moms who are with your kids all day long and manage to get so much done.
Today was a good day. We visited my parents in Dayton (about an hour and a half away). My brother was there visiting from Washington, DC. My mom, brother and I went to the Princess Diana exhibit at the Dayton Art Institute. I have been a Diana-phile since the royal wedding in 1981. I was 11 then and highly susceptible to the whole fairy tale thing. I got up at 4 am or something to watch the wedding and then went on to collect coffee table books about Diana and her kids. The year she died (1997) was the same year I got married, and I again got up at 4 am to watch her funeral. I sat on the couch under a blanket and sobbed. I know that's unbelievably corny. But I just couldn't bear the sad reality of her life, compared to the fairy tale that we all thought we were watching back in 1981. At the same time, I realized how wonderful my every-day normal person life was, compared to her life of palaces and designer clothes.
So I made mom and Christian go to this exhibit today and it was kind of a disappointment. We realized afterwards that the exhibit was put on by her family (the Spencers). So they were only able to show items from her childhood and then from her death (like hundreds of condolence books that were signed by people all over the world). The highlight for me was her wedding gown. But you walked out of that exhibit room and directly into one about her funeral. Nothing about her life in between. I guess that stuff is all owned by the royal family. There were very few photos of her sons. And my brother pointed out the irony of visiting a show about Diana on Mother's Day: her kids don't have their mother anymore.
Well, it's time to do another mommy job: wash Thomas' sheets. He is sleeping in our bed right now, because last night I found him asleep with his pjs unzipped, his diaper undone, and his bed full of pee. Why?
Saturday, May 13, 2006
we're digital!
The teenager asked for a digital camera for her birthday. She is still too young and naive to have foreseen that I would happily give her that gift, and then use it myself at every opportunity.
So here's Henry feeling better and saying "cheeeeze."
This picture below looks like the boys are putting their heads together to look at a book. But actually Henry is trying to shove Tommy away from him.
And here I am with my Tommy. He has needed a haircut for about a month.
We are ready to get back to our usual routine. I am pretty tired of being in this house and I am eating way too much.
My husband attempted to post a note to all of my cyber-friends, but it is the last comment down on my post to Kate, if you'd like to check it out.
Happy mother's day to all my mommy friends. I wish you many hugs and kisses from your darlings all weekend.
Wednesday, May 10, 2006
disclosure
Christine brings up a good question: did I tell them at the hospital about Henry's autism?
It came up a couple times- first, when we were in the "triage" area, the nurse was putting info in the computer, and asked if he had been to Children's before. I said yes, that he had been evaluated in the autism clinic. She found him in the computer and continued with taking his temp, etc. She asked if he was diagnosed with autism and explained that she works with autistic kids. I answered "yes- PDD." But that was the extent of the discussion. Come to think of it, I wonder if she noted that on his paperwork? I kind of doubt it- she didn't seem to think it was a big deal.
Later, when the paramedics were attempting to take blood and insert the IV, it came up. I forget why exactly, but I think I was telling him he did a good job using his words, and then explained "he has an autism spectrum disorder and it's hard for him to communicate sometimes." The nurse who was holding him looked surprised and asked "he's autistic?" And then kind of shrugged- I'm sure because he was communicating pretty well with her!
It's interesting, in retrospect, that I didn't feel compelled to tell everyone we came into contact with about his autism. I know that it affected how he reacted to the situations, but I also know that many other non-autistic children would have reacted the same way, or even more violently.
Maybe because I was with him the whole time. If I had needed to leave him alone with a medical person it probably would have been important to explain some of his "issues". But hey, all kids have issues, especially at the emergency room!
It came up a couple times- first, when we were in the "triage" area, the nurse was putting info in the computer, and asked if he had been to Children's before. I said yes, that he had been evaluated in the autism clinic. She found him in the computer and continued with taking his temp, etc. She asked if he was diagnosed with autism and explained that she works with autistic kids. I answered "yes- PDD." But that was the extent of the discussion. Come to think of it, I wonder if she noted that on his paperwork? I kind of doubt it- she didn't seem to think it was a big deal.
Later, when the paramedics were attempting to take blood and insert the IV, it came up. I forget why exactly, but I think I was telling him he did a good job using his words, and then explained "he has an autism spectrum disorder and it's hard for him to communicate sometimes." The nurse who was holding him looked surprised and asked "he's autistic?" And then kind of shrugged- I'm sure because he was communicating pretty well with her!
It's interesting, in retrospect, that I didn't feel compelled to tell everyone we came into contact with about his autism. I know that it affected how he reacted to the situations, but I also know that many other non-autistic children would have reacted the same way, or even more violently.
Maybe because I was with him the whole time. If I had needed to leave him alone with a medical person it probably would have been important to explain some of his "issues". But hey, all kids have issues, especially at the emergency room!
Tuesday, May 09, 2006
recovering
Thanks for all your support, friends. Henry is feeling better today. This is the first day since April 28 that I didn't give him any ibuprofen. Yesterday at 1 pm his temperature was 103.8!! I called the pediatrician and they told me to wait 24 more hours. I was getting pretty fed up with that advice, but I guess it was correct this time, because today his fever is finally gone.
His fever is down but he is still tired and coughs a lot. He will be home all week, except when we go in to school Thursday for his IEP for next year.
Because he is feeling a little better he is being a little feisty. He has a new retort that I haven't quite figured out: "I said that before you did!" Like, I told him to be nice to his brother and he said "I said that before you did mommy!" (It seems related to "I already was nice to him yesterday.")
At the hospital, after the physicians finished a procedure; putting in the IV or taking the x-ray, they always told him what a good job he did. He would argue with them: "I did not do a good job! No I didn't!" (And truly, I didn't think he did a very good job- was not very cooperative. But since one nurse warned him not to bite her, I guess they get some pretty wild kids. I don't think Henry would have considered biting. He did a good job using his words.)
Also, I thought this was cute: the day after our emergency room visit, Henry said to me "that blood test hurt me. They used a sharp thing. You want me to tell you what that sharp thing is called?"
I told him it was called a needle.
Later that day my mom said that he told her about the blood test: "they used a needle."
Any thoughts on the Time Magazine autism cover story? I think it seems like a pretty good summary of issues, although too brief. I wish I could have read that when Henry was first diagnosed. It's informative but not hysterical like some of the articles were a few years ago.
They should do a story on autism blogs- and fly us all to New York for that retreat I've been wanting to have...
PS- re: the construction worker thing: Henry has been on that kick for a little while, but the funnier thing is that he actually pronounces it "destruction worker."
His fever is down but he is still tired and coughs a lot. He will be home all week, except when we go in to school Thursday for his IEP for next year.
Because he is feeling a little better he is being a little feisty. He has a new retort that I haven't quite figured out: "I said that before you did!" Like, I told him to be nice to his brother and he said "I said that before you did mommy!" (It seems related to "I already was nice to him yesterday.")
At the hospital, after the physicians finished a procedure; putting in the IV or taking the x-ray, they always told him what a good job he did. He would argue with them: "I did not do a good job! No I didn't!" (And truly, I didn't think he did a very good job- was not very cooperative. But since one nurse warned him not to bite her, I guess they get some pretty wild kids. I don't think Henry would have considered biting. He did a good job using his words.)
Also, I thought this was cute: the day after our emergency room visit, Henry said to me "that blood test hurt me. They used a sharp thing. You want me to tell you what that sharp thing is called?"
I told him it was called a needle.
Later that day my mom said that he told her about the blood test: "they used a needle."
Any thoughts on the Time Magazine autism cover story? I think it seems like a pretty good summary of issues, although too brief. I wish I could have read that when Henry was first diagnosed. It's informative but not hysterical like some of the articles were a few years ago.
They should do a story on autism blogs- and fly us all to New York for that retreat I've been wanting to have...
PS- re: the construction worker thing: Henry has been on that kick for a little while, but the funnier thing is that he actually pronounces it "destruction worker."
Saturday, May 06, 2006
the hospital
Henry has pneumonia. He and I spent this afternoon at the hospital.
The antibiotic has not seemed to be helping, his temp. has still been high and he has been coughing. The results from his urine sample turned out to be negative anyway. So today we went to the pediatrician again, and he sent us to the emergency room at Children's Hospital.
It goes without saying (but I will say it anyway) that today was not my favorite day of motherhood. Here are a few of the moments that threatened to make me FREAK OUT, except that I couldn't because then Henry would really be in trouble:
-In the triage area, when they put the little clip oxygen sensor on his finger- made me flash back to baby Henry in the NICU.
-When we first got settled in our ER room and I heard a child in another room start screaming "NO NO NO IT HURTS!" (I later found out that it was a girl whose teeth had been knocked out by a softball, and the doctor had to shove them back in!!!!!!) My personal hell would be to spend eternity in a children's hospital emergency room.
-When the doctor finally came to examine him, and Henry started telling him "I go to kindergarten Dr. Larsen. I do art and library and computer lab. I want to be a construction worker when I grow up."
-When the folks trying to take his blood and put in an IV said "whoa- look how big that vein is- that's a good one! Oh, wait, what happened? It collapsed. We'll have to try again buddy."
I had been needing to use the restroom for like an hour and a half, so decided to take that opportunity. I could hear Henry yelling all the way down the corridor: "please stop, please stop! You already checked my arm! My arm is ok! Please stop!"
When I got back to the room, the IV was in and taped to a splint on his wrist- another NICU flashback.
_________________
They took an x-ray and found the pneumonia, although neither doctor had been able to hear it with the stethoscope. They gave him a dose of an intravenous antibiotic (I forget the name) and told me to continue the one at home also.
On one hand, I am relieved to finally know what exactly is wrong. We have a 7-year-old nephew who is a leukemia survivor, so Bill and I were imagining all kinds of awful things. But on the other hand, I am still very worried because our little guy is very sick. Please say a prayer or send some healthy vibes Henry's way. Thanks.
The antibiotic has not seemed to be helping, his temp. has still been high and he has been coughing. The results from his urine sample turned out to be negative anyway. So today we went to the pediatrician again, and he sent us to the emergency room at Children's Hospital.
It goes without saying (but I will say it anyway) that today was not my favorite day of motherhood. Here are a few of the moments that threatened to make me FREAK OUT, except that I couldn't because then Henry would really be in trouble:
-In the triage area, when they put the little clip oxygen sensor on his finger- made me flash back to baby Henry in the NICU.
-When we first got settled in our ER room and I heard a child in another room start screaming "NO NO NO IT HURTS!" (I later found out that it was a girl whose teeth had been knocked out by a softball, and the doctor had to shove them back in!!!!!!) My personal hell would be to spend eternity in a children's hospital emergency room.
-When the doctor finally came to examine him, and Henry started telling him "I go to kindergarten Dr. Larsen. I do art and library and computer lab. I want to be a construction worker when I grow up."
-When the folks trying to take his blood and put in an IV said "whoa- look how big that vein is- that's a good one! Oh, wait, what happened? It collapsed. We'll have to try again buddy."
I had been needing to use the restroom for like an hour and a half, so decided to take that opportunity. I could hear Henry yelling all the way down the corridor: "please stop, please stop! You already checked my arm! My arm is ok! Please stop!"
When I got back to the room, the IV was in and taped to a splint on his wrist- another NICU flashback.
_________________
They took an x-ray and found the pneumonia, although neither doctor had been able to hear it with the stethoscope. They gave him a dose of an intravenous antibiotic (I forget the name) and told me to continue the one at home also.
On one hand, I am relieved to finally know what exactly is wrong. We have a 7-year-old nephew who is a leukemia survivor, so Bill and I were imagining all kinds of awful things. But on the other hand, I am still very worried because our little guy is very sick. Please say a prayer or send some healthy vibes Henry's way. Thanks.
Thursday, May 04, 2006
I never thought I'd use the word urine in a post
Henry's been sick again. When Henry's sick, I get this feeling like I can't breathe, or think straight. I mean, partly because of the sleep deprivation. But there's something else. It's like all my worst fears come out in a cloud to strangle me: Henry's always been so small and so fragile. He gets hit worse by illnesses than other kids. And that combined with the fact that he's not a great communicator just makes me hysterical. He has this random high fever with few other symptoms that made me think he caught some kind of mysterious exotic disease at the zoo last week.
He was sent home from school Friday with a fever around 101 degrees. Over the weekend we measured it at 102.6 a couple times, and 103.7 once (all under his arm). We went to see the doctor Monday. I carried Henry in and he whimpered on my lap the entire hour that we were there. In the end the doctor said his ears were fine, the strep test was negative, and he just has a virus that we need to wait out. They usually last about 72 hours.
OK, thanks. Except it had been about 75 hours already at that point, with no sign of improvement.
I talked to Henry's teacher Tuesday- I knew that the girl he rides to school with had been out sick and wanted to find out what had been wrong with her. It turns out she vomited in the car on the way to school one day (riding in the back seat with Henry). So that must be where this came from, except that she only missed 2 days of school, and Henry seems likely to miss 6. Poor little guy.
He keeps asking to go to the library, which is pretty funny. I'm like "buddy, you need to be able to walk on your own two feet and go to the bathroom on your own before we can make a trip to the library." And he lays there and looks at me with those glassy eyes and his too-rosy cheeks and says "I am feeling better mommy." Sure you are.
We went back to the doctor's office on Wednesday and saw a different doctor in the practice. A young woman this time, fresh out of med school and a new mother to boot. I find that new doctors and female doctors seem to take their time a little more and be more sympathetic. And Henry responds much better to them. He let her check his ears, mouth, feel his abdomen, all with no protest and no help from me (a kind way of saying that I didn't have to hold him down.)
I mentioned that he has been wetting the bed, and that prompted her to check for a urinary tract infection. Instead of stealthily trying to get Henry's urine, I made the mistake of explaining to him "you're going to go pee pee in this cup. And we're going to give it to doctor H. Isn't that funny? That's kind of weird, huh?" And he's looking at me like I'm crazy if I think he's going to cooperate with that.
I begged him several times to go potty, which he of course refused. He also refused to drink anything- smart kid. He kept saying "you don't want it out of a cup!" And I started to realize that he must think we were going to make him drink the urine. That's what you do with something in a cup, after all. So I eventually did what I should have done in the beginning: let him go potty "just in the toilet", hid the cup behind my back, waited until he started peeing, and then reached behind him and caught some.
The urine did show sign of an infection, so we have been on an antibiotic since last night. I had hoped he would feel better quickly and could go on his field trip to the fire station today, but it was not to be.
The worrying just never stops. It ebbs enough that I kind of forget what it feels like to jump up at night when I hear him cough, or check on him obsessively even when he's not coughing. But then we have a week when the worrying is back in full force and it really knocks me on my butt.
He was sent home from school Friday with a fever around 101 degrees. Over the weekend we measured it at 102.6 a couple times, and 103.7 once (all under his arm). We went to see the doctor Monday. I carried Henry in and he whimpered on my lap the entire hour that we were there. In the end the doctor said his ears were fine, the strep test was negative, and he just has a virus that we need to wait out. They usually last about 72 hours.
OK, thanks. Except it had been about 75 hours already at that point, with no sign of improvement.
I talked to Henry's teacher Tuesday- I knew that the girl he rides to school with had been out sick and wanted to find out what had been wrong with her. It turns out she vomited in the car on the way to school one day (riding in the back seat with Henry). So that must be where this came from, except that she only missed 2 days of school, and Henry seems likely to miss 6. Poor little guy.
He keeps asking to go to the library, which is pretty funny. I'm like "buddy, you need to be able to walk on your own two feet and go to the bathroom on your own before we can make a trip to the library." And he lays there and looks at me with those glassy eyes and his too-rosy cheeks and says "I am feeling better mommy." Sure you are.
We went back to the doctor's office on Wednesday and saw a different doctor in the practice. A young woman this time, fresh out of med school and a new mother to boot. I find that new doctors and female doctors seem to take their time a little more and be more sympathetic. And Henry responds much better to them. He let her check his ears, mouth, feel his abdomen, all with no protest and no help from me (a kind way of saying that I didn't have to hold him down.)
I mentioned that he has been wetting the bed, and that prompted her to check for a urinary tract infection. Instead of stealthily trying to get Henry's urine, I made the mistake of explaining to him "you're going to go pee pee in this cup. And we're going to give it to doctor H. Isn't that funny? That's kind of weird, huh?" And he's looking at me like I'm crazy if I think he's going to cooperate with that.
I begged him several times to go potty, which he of course refused. He also refused to drink anything- smart kid. He kept saying "you don't want it out of a cup!" And I started to realize that he must think we were going to make him drink the urine. That's what you do with something in a cup, after all. So I eventually did what I should have done in the beginning: let him go potty "just in the toilet", hid the cup behind my back, waited until he started peeing, and then reached behind him and caught some.
The urine did show sign of an infection, so we have been on an antibiotic since last night. I had hoped he would feel better quickly and could go on his field trip to the fire station today, but it was not to be.
The worrying just never stops. It ebbs enough that I kind of forget what it feels like to jump up at night when I hear him cough, or check on him obsessively even when he's not coughing. But then we have a week when the worrying is back in full force and it really knocks me on my butt.
Friday, April 28, 2006
for my first child
1st day of school last fall
on the slip n slide with her brothers
Gretchen and Kate, summer 1995? Dear Kate,
It seems like it's pretty hard for me to tell you how I feel. So I thought I would try this. (I wrote this back in December but never quite knew the right time to post it- your birthday seems as good a time as any.)
You were not the child who showed me what it's like to be pregnant, or to raise a baby. But, before those monstrous boys came along, you taught me how to be a mom. I remember when you first came to live with us, before first grade- I was scared of everything. I didn't know how to pack a lunch, I didn't know how to talk to other moms, I didn't know how to bring a dish for the girl scout picnic. Those things terrified me. I kind of thought that all the other moms had attended some kind of class, or were given a handbook when their kids were born, that told them how to do all that stuff, and I had missed out on it.
But I wasn't scared of you. I loved having you around. I loved brushing your hair at night and then reading you a book. I loved playing with your toys (whether or not you were there- haha). Even though we tease you about it, I think your dad and I even loved that you made us stay in the bathroom and talk to you while you were in the shower! I have so many sweet memories of shopping for Christmas crafts with you and then working on them every year, and of baking cookies together.
I have beautiful, beautiful memories of you and your dad singing together- Disney songs and Eagles songs. And of course I love remembering preparing for our wedding- going to dress fittings and having our nails done.
Those are all memories from when you were a little kid. Here are some things I feel right now--
10 great things about you (in no particular order):
1. You are smart and don't try to hide it
2. You like going to church
3. You help with your brothers without me even asking you to
4. You are passionate about basketball
5. Basketball is something that you and your dad are able to share
6. You have always liked to read
7. You are very open and honest with your dad and me
8. You sing along with me sometimes
9. You have faced, and continue to face, difficult situations with grace and maturity
10. You are true to yourself
We aren't biologically related. And the circumstances of that sometimes cause us some extra stress. But we love each other. And we are family.
Happy sweet 16.
Love, Gret
Kate and Bill at our wedding, May 31, 1997
Thursday, April 20, 2006
finally photos
OK, this might be my favorite picture of Henry EVER. EVER. Do you understand? EVER.
Let me set the scene: you know that Henry's current favorite movie is Lady and the Tramp. The picture on the cover of the DVD is from the spaghetti eating scene. Henry talks about it a lot- we discuss all the items in the scene: the bread sticks, the tablecloth, the candle, Tony (the restaurant owner and accordion player).
So one Sunday (he's wearing his church clothes) I decided to make spaghetti and meatballs (sauce from a jar with meatballs already added- please, I'm NOT a cook.) I made bread sticks also, and threw a tablecloth and candle on the table. Voila- A Lady and the Tramp dinner!
I can't stop laughing at the way he's pointing at the spaghetti. And note that his DVD is right there next to the plate.
When I showed him these pictures last night, he grabbed this one, along with its double, and carried them all around for the rest of the night.
These next couple pictures are from the last trip to the zoo. (The time that he apologized to his brother.) Here they are watching the diver clean an aquarium. Henry was so fascinated by this.
At the petting zoo I pointed out these 2 goats and how they were "snuggling" together. Henry wanted to snuggle with them too:
More tomorrow...
Let me set the scene: you know that Henry's current favorite movie is Lady and the Tramp. The picture on the cover of the DVD is from the spaghetti eating scene. Henry talks about it a lot- we discuss all the items in the scene: the bread sticks, the tablecloth, the candle, Tony (the restaurant owner and accordion player).
So one Sunday (he's wearing his church clothes) I decided to make spaghetti and meatballs (sauce from a jar with meatballs already added- please, I'm NOT a cook.) I made bread sticks also, and threw a tablecloth and candle on the table. Voila- A Lady and the Tramp dinner!
I can't stop laughing at the way he's pointing at the spaghetti. And note that his DVD is right there next to the plate.When I showed him these pictures last night, he grabbed this one, along with its double, and carried them all around for the rest of the night.
These next couple pictures are from the last trip to the zoo. (The time that he apologized to his brother.) Here they are watching the diver clean an aquarium. Henry was so fascinated by this.
At the petting zoo I pointed out these 2 goats and how they were "snuggling" together. Henry wanted to snuggle with them too: 
More tomorrow...
Accessing Ability
I'm bouncing off squaregirl's post to give an example of something special that Henry's teachers do to access his abilities.
I've bragged already that Henry knows 25 words. He can read them and spell them. He can also add and subtract.
The thing is, Henry can't write. Not very well at all. He brings home papers every day where the teachers have written the letters H E N and he has traced over them. He is not even writing his entire first name.
I'm positive that there are teachers out there who would think that if a child can't even write his first name, then he must not be capable of anything more advanced. But Henry's teachers understand that his mind grasps many things that he just isn't able to transfer through his hands. They let him dictate answers and they write them down. Or they provide a couple options and have him circle the correct answer. Still working on the fine motor skills, but not letting it stop him from learning and showing what he has already learned.
That's good teaching. That's making a kid feel capable, rather than incapable.
I've bragged already that Henry knows 25 words. He can read them and spell them. He can also add and subtract.
The thing is, Henry can't write. Not very well at all. He brings home papers every day where the teachers have written the letters H E N and he has traced over them. He is not even writing his entire first name.
I'm positive that there are teachers out there who would think that if a child can't even write his first name, then he must not be capable of anything more advanced. But Henry's teachers understand that his mind grasps many things that he just isn't able to transfer through his hands. They let him dictate answers and they write them down. Or they provide a couple options and have him circle the correct answer. Still working on the fine motor skills, but not letting it stop him from learning and showing what he has already learned.
That's good teaching. That's making a kid feel capable, rather than incapable.
Wednesday, April 19, 2006
blah
I swear it's like clockwork on this stupid blog: as soon as I write a suzy sunshine post like the one about how thankful I am, then I slip into a funk from which there seems to be no escape.
I am still so grumpy, and I don't think it's all just because our Easter plans got messed up. I am just irritated lately- irritated with our dirty house and smelly trash and the street I need to take being closed and our dirty car and the people at work and the Starbucks cup (decaf still) that is dripping on me every time I take a drink.
(And, no, it's not PMS. Not because I'm pregnant, Wendy! But it's just not the right week for that excuse.)
I'm even getting frustrated with the kids, which makes me feel even crappier. The weather has been so warm that I got out some hand-me-down soccer slides for Henry to wear. He could not manage to keep them on his feet, and when he did he did this shuffle walk- like if he lifted his feet off the ground the shoes would fly right off. I was getting so impatient with him.
I started to tell a friend at work about it (the person who had handed-them-down to us) and before I could even finish the story she said that her son hated those shoes and could never keep them on his feet. So I was chalking it up to Henry's-autism-makes-him-so-uncoordinated, when really the shoes are messed up.
Last night Henry kept saying "I'm sorry mommy." And I don't know why- he hadn't been scolded for anything. I think he could just tell I was mad and figured saying he was sorry would make it better. How sweet and pitiful is that?
I am still so grumpy, and I don't think it's all just because our Easter plans got messed up. I am just irritated lately- irritated with our dirty house and smelly trash and the street I need to take being closed and our dirty car and the people at work and the Starbucks cup (decaf still) that is dripping on me every time I take a drink.
(And, no, it's not PMS. Not because I'm pregnant, Wendy! But it's just not the right week for that excuse.)
I'm even getting frustrated with the kids, which makes me feel even crappier. The weather has been so warm that I got out some hand-me-down soccer slides for Henry to wear. He could not manage to keep them on his feet, and when he did he did this shuffle walk- like if he lifted his feet off the ground the shoes would fly right off. I was getting so impatient with him.
I started to tell a friend at work about it (the person who had handed-them-down to us) and before I could even finish the story she said that her son hated those shoes and could never keep them on his feet. So I was chalking it up to Henry's-autism-makes-him-so-uncoordinated, when really the shoes are messed up.
Last night Henry kept saying "I'm sorry mommy." And I don't know why- he hadn't been scolded for anything. I think he could just tell I was mad and figured saying he was sorry would make it better. How sweet and pitiful is that?
Monday, April 17, 2006
bad weekend?
I'm having a kind of mind/emotion battle today, as I think about the weekend. My brain is trying to convince the rest of me that it wasn't a bad weekend. So why do I feel so grumpy today?
We were invited to a family birthday party on Saturday, and had all planned to travel with my mom and dad and stay in a hotel. I had everything ready to do Easter baskets in the hotel room.
Kate stayed home sick from school all week, but was feeling better on Friday (no school for Good Friday.) I had almost everything packed and ready to go Friday night, as the party was at 1 pm and we would have a 3-4 hour drive Saturday morning.
Then Henry woke up at 7:15 Saturday morning and said "I feel siiiiick. I'm feeling siiick, mommy." He felt very warm and his nose had run all over his sheets (ewww). So I made a quick decision. It seemed like the best thing to do was for Bill to stay home with Henry and take him to the doctor, while Thomas and I went on the trip with my parents.
Bill suggested that we could just give him some medicine and still try to go. But I thought of all the bad possibilities: he'd feel worse and worse and someone would have to stay back at the hotel with him so he wouldn't infect all the other party guests; he'd feel worse and worse and we'd have to miss school and work Monday to go to the doctor because we hadn't on Saturday (and Monday was another field trip day!)
So the family split up and the little one and I left town.
Henry spent the rest of the day feeling better and better. The doctor found nothing wrong.
And I spent the rest of the weekend feeling like I made the wrong call.
Now I know, in my brain, that I used good reasoning to come to my decision, and none of us are the worse for it. Henry had a nice weekend at home, while Thomas and I had a nice weekend visiting relatives.
But we stayed in a hotel, with a pool, and I know that would have been fun for Henry. And I think I'm even more disappointed at not getting to "show off" Henry. These were my aunts, uncles and cousins. They only see my kids once a year, at the most. They all know about Henry's diagnosis, and I kind of wanted to let them see the real Henry, not just the picture they might have in their mind, formed when he was 2 years old and screaming at some event...
My aunt had a little Easter egg hunt on her front yard that Thomas participated in. But the rest of the family didn't celebrate Easter at all. At first I thought we might do Easter baskets Sunday evening when I got home. But by the time I got home I thought that idea seemed even more lame than not doing them at all. The boys could really care less anyway, and the items I got for Kate's basket were things like a hand-held Boggle game that I thought she could do in the car. So now I'm being a huge baby and thinking about returning all the stuff I bought for Easter, the purchase of which was just a big waste of time.
Why do I insist on being so disappointed about this?
We were invited to a family birthday party on Saturday, and had all planned to travel with my mom and dad and stay in a hotel. I had everything ready to do Easter baskets in the hotel room.
Kate stayed home sick from school all week, but was feeling better on Friday (no school for Good Friday.) I had almost everything packed and ready to go Friday night, as the party was at 1 pm and we would have a 3-4 hour drive Saturday morning.
Then Henry woke up at 7:15 Saturday morning and said "I feel siiiiick. I'm feeling siiick, mommy." He felt very warm and his nose had run all over his sheets (ewww). So I made a quick decision. It seemed like the best thing to do was for Bill to stay home with Henry and take him to the doctor, while Thomas and I went on the trip with my parents.
Bill suggested that we could just give him some medicine and still try to go. But I thought of all the bad possibilities: he'd feel worse and worse and someone would have to stay back at the hotel with him so he wouldn't infect all the other party guests; he'd feel worse and worse and we'd have to miss school and work Monday to go to the doctor because we hadn't on Saturday (and Monday was another field trip day!)
So the family split up and the little one and I left town.
Henry spent the rest of the day feeling better and better. The doctor found nothing wrong.
And I spent the rest of the weekend feeling like I made the wrong call.
Now I know, in my brain, that I used good reasoning to come to my decision, and none of us are the worse for it. Henry had a nice weekend at home, while Thomas and I had a nice weekend visiting relatives.
But we stayed in a hotel, with a pool, and I know that would have been fun for Henry. And I think I'm even more disappointed at not getting to "show off" Henry. These were my aunts, uncles and cousins. They only see my kids once a year, at the most. They all know about Henry's diagnosis, and I kind of wanted to let them see the real Henry, not just the picture they might have in their mind, formed when he was 2 years old and screaming at some event...
My aunt had a little Easter egg hunt on her front yard that Thomas participated in. But the rest of the family didn't celebrate Easter at all. At first I thought we might do Easter baskets Sunday evening when I got home. But by the time I got home I thought that idea seemed even more lame than not doing them at all. The boys could really care less anyway, and the items I got for Kate's basket were things like a hand-held Boggle game that I thought she could do in the car. So now I'm being a huge baby and thinking about returning all the stuff I bought for Easter, the purchase of which was just a big waste of time.
Why do I insist on being so disappointed about this?
Wednesday, April 12, 2006
time to blog again
It's been a busy week- at work and at home, and it's been awhile since I posted. But I feel it bubbling out of me as I try to catch up on my blog reading.
I got all choked up reading squaregirl's post today- the part about acceptance: "Acceptance is key to growth." And I read something very similar from Oliver's mom today: "I find that what many (including myself) would see as progress on his part, is directly tied to progress of my own!"
I don't know if I'm articulating this very well, but it all seems tied in to what I realized last week about Henry's teachers. Yes, Henry is doing much better this year. But I don't think so much of that is that Henry has changed and gotten "better." I think he is now with teachers who respond to his abilities and who make him feel accepted. And he is thriving. And as the rest of us in his family understand him better, we are all thriving.
Yesterday Thomas and I picked Henry up at school. (Usually he gets a ride home from the school transportation service.) It is always nice to get to visit with his teachers (and it was nice to hear them tell me how cute Tommy is!) But even better was that Ms. H's supervisor was there. She went on about how well Henry was doing, and about how much they LOVE him. And about how smart he is--Henry's report card came home this week, and says that he can read 25 words!!!! I just have to pinch myself...
Let's see, what else is new?
-Well, gymnastics class for Henry seems to have been a failed experiment. I didn't take him on Friday, Bill did. Class was supposed to run from 5-5:55. But when Thomas and I got home around 5:45, Bill and Henry were arriving home also. So they bailed out of gymnastics early. Bill said that Henry kept saying "I'm too big to do that!" (We think he may have meant "not big enough.") Bill said that it was frustrating because the instructor would have the kids do something that Henry does all the time at home (like lay upside-down across a tube), and Henry would (OK, I know this isn't a PC term, but) freak out. So I'm kind of inclined to just cancel this class. Henry gets lots of physical activity at school (physical therapy and adaptive phys. ed., plus just playing on the playground, which he seems to enjoy more and more) and he does have swimming lessons once a week also.
-From the "mommy's perseverations" files:
I don't watch much tv. When the people at work talk about American Idol, I just hang my head in shame because I've never watched an episode! I'm not against tv at all- it's just that I'm too busy in the evenings to watch, and then I fall asleep in bed with one of the boys, and then I just stagger in to my own bed. Even when I do catch a program, I'm not likely to catch it again the following week, so I lose track of it.
But the past couple of weeks I have watched Lost. And gotten hooked. Last weekend we rented DVDs of the first season, and Bill and I stayed up Saturday night until about 2:30 am watching those old episodes. Are we cool or are we geeks? Never mind, I don't want to know the answer.
We still have many episodes to watch and it's about as close to a "date" as we are going to get, so I guess we will enjoy our evenings together watching Lost after the kids go to sleep.
-This will never turn into a "preachy" blog, but...
We did something cool in church this Sunday: Instead of an official sermon, the rector led us in some "contemplative prayer." He had us all sit quietly with our feet flat on the floor, hands on our thighs, palms-up, eyes closed. The really interesting thing to me was how similar it all was to the meditative time at the end of yoga class. Except this was better to me because we were sitting up in wooden pews, rather than laying on the floor. It was easier for me to keep track of my thoughts and keep them focused on prayer, rather than drifting off to sleep, as I often feared would happen in yoga class.
Even though I was up so late the night before, watching Lost, I felt very alert the whole time and it was so nice to have quiet time to gather my thoughts. And most of my prayer time was spent being thankful. Sometimes I am dumbfounded by how good my life is. (And I'd better knock on wood as I type that!) Do most of us realize how lucky we are? If the "worst" thing in my life is a child with a disability, who is happy and healthy and loving and loved? I need to spend more time giving attention to being thankful.
I got all choked up reading squaregirl's post today- the part about acceptance: "Acceptance is key to growth." And I read something very similar from Oliver's mom today: "I find that what many (including myself) would see as progress on his part, is directly tied to progress of my own!"
I don't know if I'm articulating this very well, but it all seems tied in to what I realized last week about Henry's teachers. Yes, Henry is doing much better this year. But I don't think so much of that is that Henry has changed and gotten "better." I think he is now with teachers who respond to his abilities and who make him feel accepted. And he is thriving. And as the rest of us in his family understand him better, we are all thriving.
Yesterday Thomas and I picked Henry up at school. (Usually he gets a ride home from the school transportation service.) It is always nice to get to visit with his teachers (and it was nice to hear them tell me how cute Tommy is!) But even better was that Ms. H's supervisor was there. She went on about how well Henry was doing, and about how much they LOVE him. And about how smart he is--Henry's report card came home this week, and says that he can read 25 words!!!! I just have to pinch myself...
Let's see, what else is new?
-Well, gymnastics class for Henry seems to have been a failed experiment. I didn't take him on Friday, Bill did. Class was supposed to run from 5-5:55. But when Thomas and I got home around 5:45, Bill and Henry were arriving home also. So they bailed out of gymnastics early. Bill said that Henry kept saying "I'm too big to do that!" (We think he may have meant "not big enough.") Bill said that it was frustrating because the instructor would have the kids do something that Henry does all the time at home (like lay upside-down across a tube), and Henry would (OK, I know this isn't a PC term, but) freak out. So I'm kind of inclined to just cancel this class. Henry gets lots of physical activity at school (physical therapy and adaptive phys. ed., plus just playing on the playground, which he seems to enjoy more and more) and he does have swimming lessons once a week also.
-From the "mommy's perseverations" files:
I don't watch much tv. When the people at work talk about American Idol, I just hang my head in shame because I've never watched an episode! I'm not against tv at all- it's just that I'm too busy in the evenings to watch, and then I fall asleep in bed with one of the boys, and then I just stagger in to my own bed. Even when I do catch a program, I'm not likely to catch it again the following week, so I lose track of it.
But the past couple of weeks I have watched Lost. And gotten hooked. Last weekend we rented DVDs of the first season, and Bill and I stayed up Saturday night until about 2:30 am watching those old episodes. Are we cool or are we geeks? Never mind, I don't want to know the answer.
We still have many episodes to watch and it's about as close to a "date" as we are going to get, so I guess we will enjoy our evenings together watching Lost after the kids go to sleep.
-This will never turn into a "preachy" blog, but...
We did something cool in church this Sunday: Instead of an official sermon, the rector led us in some "contemplative prayer." He had us all sit quietly with our feet flat on the floor, hands on our thighs, palms-up, eyes closed. The really interesting thing to me was how similar it all was to the meditative time at the end of yoga class. Except this was better to me because we were sitting up in wooden pews, rather than laying on the floor. It was easier for me to keep track of my thoughts and keep them focused on prayer, rather than drifting off to sleep, as I often feared would happen in yoga class.
Even though I was up so late the night before, watching Lost, I felt very alert the whole time and it was so nice to have quiet time to gather my thoughts. And most of my prayer time was spent being thankful. Sometimes I am dumbfounded by how good my life is. (And I'd better knock on wood as I type that!) Do most of us realize how lucky we are? If the "worst" thing in my life is a child with a disability, who is happy and healthy and loving and loved? I need to spend more time giving attention to being thankful.
Thursday, April 06, 2006
And now, for something completely different
(I intend to clarify some points on the last post, but need to get the psychologist's report out of my files. So, until then...)
Kristin, I haven't seen you post much about ice cream lately. This week I found a new treat that I love: Klondike strawberry cheesecake flavor bars. Mmmm. They have chunks of graham cracker crust stuff mixed in. Also, a friend in Toledo, Ohio reports that her favorite flavor of ice cream is
Toft's yellow Cake Batter. I don't think we have this brand around here. Do you have it up in Michigan? Anyone else? What's your favorite ice cream?
I've actually been trying to do the slim-fast thing lately. But also eating Klondikes at night for dessert. My husband assures me that there's nothing wrong with that. (As if I needed one more reason to love him.)
Henry had fun for the first few days at L's house, but we think this "inclusion" is getting to be a little too much for him. Today and yesterday he said he didn't want to go. A couple boys like to play a Super Mario video game, and he doesn't like that for some reason- I think it has scary parts and scary music. Of course he can just leave the room if they are playing, but the bad connotation of the music seems to stay with him and trouble him.
So I may try to take tomorrow off and have a mommy/Henry day for the last day of his spring break. I thought we could go to a dollar movie or... I'm not sure what else.
Kristin, I haven't seen you post much about ice cream lately. This week I found a new treat that I love: Klondike strawberry cheesecake flavor bars. Mmmm. They have chunks of graham cracker crust stuff mixed in. Also, a friend in Toledo, Ohio reports that her favorite flavor of ice cream is
Toft's yellow Cake Batter. I don't think we have this brand around here. Do you have it up in Michigan? Anyone else? What's your favorite ice cream?
I've actually been trying to do the slim-fast thing lately. But also eating Klondikes at night for dessert. My husband assures me that there's nothing wrong with that. (As if I needed one more reason to love him.)
Henry had fun for the first few days at L's house, but we think this "inclusion" is getting to be a little too much for him. Today and yesterday he said he didn't want to go. A couple boys like to play a Super Mario video game, and he doesn't like that for some reason- I think it has scary parts and scary music. Of course he can just leave the room if they are playing, but the bad connotation of the music seems to stay with him and trouble him.
So I may try to take tomorrow off and have a mommy/Henry day for the last day of his spring break. I thought we could go to a dollar movie or... I'm not sure what else.
Tuesday, April 04, 2006
what's working for Henry
I feel like I keep writing about Henry's progress, but haven't shared what exactly it is that is working so well for him. Frankly, I'm a little uneasy about delving into this topic, because so many of you are so so educated about, and involved with, the different approaches to teaching "our" kids. I feel like I am fumbling along and then "hey, wow, something's working!"
Right now Henry only receives therapies (speech, occupational and physical) at school. When he was in preschool we did additional speech therapy once a week. But this fall, after he started full days of "real" school, I felt that Henry was getting enough serious work during the school day and we stopped doing the additional speech. His only extracurricular activity right now is swimming lessons once a week, and the new gymnastics that we will be starting on Friday.
Henry wasn't diagnosed until a year ago, at age 5 1/2. So we weren't really eligible for autism-specific types of programs until then. At the time of our diagnosis, the psychologist recommended ABA and basically said "you have to set up your own team. Good luck with that." I had NO IDEA where to begin, and really didn't get any helpful information from anyone.
As I explained in the Henry Chronicles, we started out intending to have Henry in the "regular" kindergarten class at our local elementary school, with an aide. That would be a half-day program, so I signed him up for the "Y" program after school. As the preschool year deteriorated though, that plan changed.
I was just looking through old e-mails to jog my memory. Just to let you feel my pain of last year, here is one I received in May from the director of special education in our school district:
"Staff from (our neighborhood school) went to observe Henry again in his preschool class and noted the increase of aggression that has resulted in the need for additional staffing in the class. The members, (the kindergarten teacher, the special educator, and the speech pathologist) all noted the level of aggression with concern as to whether the general ed setting will provide adequate support... She goes on to suggest 2 special needs classes available in the district, as an alternative.
There were concerns expressed by team members that his current levels of behavior may also be a challenge for the Y program and that this option may not meet his needs a we hoped they would when we met at the MFE meeting.
We can talk more and then try to set a meeting time to discuss the options. I am sure that the staff from (both schools) would be willing to meet even if it is after the school year has come to an end.
We could invite the supervisor from (the preschool) as well if her staff is not available.
Let me know how you would like to proceed. We do not want to pick a less restrictive setting if that would not give him the supports that it appears that he currently needs."
June 10th the special ed director called me to say there was a space available in a STACK program for the fall. (Now that I look back, do you think they were scrambling to find somewhere to put him?!) I contacted Henry's former teacher to get her input on this STACK program, as well as the psychologist who had diagnosed him. The teacher was enthusiastic about STACK. The psychologist was a little more guarded. He said that the class could be good for Henry, but that I should be sure to be very specific about inclusion goals in his IEP.
(OK, I've gotten a little off-track here, and wandered down memory lane. But that is helpful for me sometimes- to remember where we've been and how far we've come in less than a year.) If you click on the link to STACK, you can read about some of the basic principles of Henry's classroom. He has thrived there this year.
He is one of 5 students. 4 of them are kindergarten age and one boy is a 3rd grader, I believe. Some of the methods his teacher and aides employ include picture schedules and reward systems (he "gets 4 squares" to earn computer time, if he has gentle hands all day he earns a little reward like a sticker or laminated picture of one of his favorite tv shows or Disney characters.) His class takes a field trip every month.
That reminds me that this morning Henry told me he wanted to go to a spaceship on his next field trip. I'll have to remember to tell Ms. H!
A year ago, I thought I cared so much about Henry being "included" with the "regular" kids. Now it is one of my lowest priorities.
I love that he looks forward to his inclusion. His teacher said that he asks about it every day, and we plan to do more next year. But that can come slowly. I care so much more about his reading, math, saying "I'm sorry", taking turns with a peer. Having teachers who really really understand him and connect with him. That is what has always "clicked" with Henry. If he feels you like him, then he likes you and will do whatever you ask.
I don't want to get sad and bitter about it, but I know he has had teachers in the past who didn't understand him. Who found him unpredictable and, I think, frightening because of that unpredictability.
I'm so so thankful to be where we are now. So thankful that Henry (though his mommy is just bumbling through life sometimes) ended up in the right place. Somebody must be looking out for us.
Right now Henry only receives therapies (speech, occupational and physical) at school. When he was in preschool we did additional speech therapy once a week. But this fall, after he started full days of "real" school, I felt that Henry was getting enough serious work during the school day and we stopped doing the additional speech. His only extracurricular activity right now is swimming lessons once a week, and the new gymnastics that we will be starting on Friday.
Henry wasn't diagnosed until a year ago, at age 5 1/2. So we weren't really eligible for autism-specific types of programs until then. At the time of our diagnosis, the psychologist recommended ABA and basically said "you have to set up your own team. Good luck with that." I had NO IDEA where to begin, and really didn't get any helpful information from anyone.
As I explained in the Henry Chronicles, we started out intending to have Henry in the "regular" kindergarten class at our local elementary school, with an aide. That would be a half-day program, so I signed him up for the "Y" program after school. As the preschool year deteriorated though, that plan changed.
I was just looking through old e-mails to jog my memory. Just to let you feel my pain of last year, here is one I received in May from the director of special education in our school district:
"Staff from (our neighborhood school) went to observe Henry again in his preschool class and noted the increase of aggression that has resulted in the need for additional staffing in the class. The members, (the kindergarten teacher, the special educator, and the speech pathologist) all noted the level of aggression with concern as to whether the general ed setting will provide adequate support... She goes on to suggest 2 special needs classes available in the district, as an alternative.
There were concerns expressed by team members that his current levels of behavior may also be a challenge for the Y program and that this option may not meet his needs a we hoped they would when we met at the MFE meeting.
We can talk more and then try to set a meeting time to discuss the options. I am sure that the staff from (both schools) would be willing to meet even if it is after the school year has come to an end.
We could invite the supervisor from (the preschool) as well if her staff is not available.
Let me know how you would like to proceed. We do not want to pick a less restrictive setting if that would not give him the supports that it appears that he currently needs."
June 10th the special ed director called me to say there was a space available in a STACK program for the fall. (Now that I look back, do you think they were scrambling to find somewhere to put him?!) I contacted Henry's former teacher to get her input on this STACK program, as well as the psychologist who had diagnosed him. The teacher was enthusiastic about STACK. The psychologist was a little more guarded. He said that the class could be good for Henry, but that I should be sure to be very specific about inclusion goals in his IEP.
(OK, I've gotten a little off-track here, and wandered down memory lane. But that is helpful for me sometimes- to remember where we've been and how far we've come in less than a year.) If you click on the link to STACK, you can read about some of the basic principles of Henry's classroom. He has thrived there this year.
He is one of 5 students. 4 of them are kindergarten age and one boy is a 3rd grader, I believe. Some of the methods his teacher and aides employ include picture schedules and reward systems (he "gets 4 squares" to earn computer time, if he has gentle hands all day he earns a little reward like a sticker or laminated picture of one of his favorite tv shows or Disney characters.) His class takes a field trip every month.
That reminds me that this morning Henry told me he wanted to go to a spaceship on his next field trip. I'll have to remember to tell Ms. H!
A year ago, I thought I cared so much about Henry being "included" with the "regular" kids. Now it is one of my lowest priorities.
I love that he looks forward to his inclusion. His teacher said that he asks about it every day, and we plan to do more next year. But that can come slowly. I care so much more about his reading, math, saying "I'm sorry", taking turns with a peer. Having teachers who really really understand him and connect with him. That is what has always "clicked" with Henry. If he feels you like him, then he likes you and will do whatever you ask.
I don't want to get sad and bitter about it, but I know he has had teachers in the past who didn't understand him. Who found him unpredictable and, I think, frightening because of that unpredictability.
I'm so so thankful to be where we are now. So thankful that Henry (though his mommy is just bumbling through life sometimes) ended up in the right place. Somebody must be looking out for us.
Monday, April 03, 2006
It's been a weird week
Lately I feel like my life is straight out of That's Good, That's Bad.
Chapter 1. Laundry
Our dryer stopped working last Saturday- that's bad. I spent the week taking a basket of wet laundry with me every day to work, and then throwing it in the dryer at the laundromat each evening. I was really dreading it, but it was kind of fun- in the way that sometimes it’s fun to shake up your routine-that's good!
Tommy loves the laundromat of course, because all the machines have glass doors and are on his level, so he can see the stuff spinning around. They also have a basket of beat up toys and a couple couches and a tv. A couple nights the weather was so nice that we put a load in the dryer and then took a long walk. Afterwards I had so much energy and my mood was 100x improved. It’s so amazing what a little exercise and sunshine can do.
Chapter 2. Gymnastics
I finally called last week to inquire about a special needs gymnastics class nearby. Their spring sessions were just starting last week, and they had room for Henry- that's good! Henry's spring break started Friday, and he stayed with Tommy at L's house. I thought I would pick them both up and we'd head over to check out the 5 pm class. Henry protested the whole way there: "you don't want to go to this gymnastics class! You want to wait in the car!" By the time we got there, he was crying and I had to carry him in. That's bad.
Once, inside however, he changed his tune. He saw all the fun equipment and wanted to check it out. That's good. The previous class ended and I had both boys take off their shoes and run out onto the mats. Ooops. Turns out they were supposed to "wait behind the red line" until it was time for class to start. So I had to drag both my sons out of their new heaven on earth, to wait. That's bad.
It was completely idiotic of me to attempt to take both boys at the same time. What was I thinking? The instructor tried to have Henry participate, but he was way too dysregulated by then. She had the kids each sit on a colored square and then run in place, etc. He was just a puddle by that point. We ended up leaving, but I told the instructor that Henry would be back next week. I will definitely update on that. I don't know what to anticipate...
Chapter 3. The restaurant
Even after all the drama of the gymnastics class, I wasn't done in yet. Maybe I wanted to end on a high note, or do something special because it was spring break for Henry. So I suggested we eat at Bob Evans. This went very well. We quickly ordered french toast and pancakes, which the boys shared and gobbled up happily. Henry even flagged down our server, Kelly, and requested an additional side order of bacon. That's good.
They finished eating before I did, started arguing, and Thomas pooped in his pullup and started talking about it loudly. That's bad. So we left a little prematurely.
Chapter 4. Basketball Banquet
Kate's basketball banquet was Sunday. I had asked my parents (as I've done other years) to come stay with the boys while we attended. But when I RSVP'd to the organizer (one of the captain's mothers) that there would be 3 of us, she replied "you're not bringing the little ones? Oh, but this is a family affair. Everyone else is bringing their siblings. Well, they are certainly welcome." So I felt a little ashamed and decided to bring the boys.
We arrived at 4:30 (and didn't leave until 7:30. Does that tip you off as to how this is going to go?) Food was spread out on the tables, but no one was eating yet. One of the moms opened up her fruit bowl and started giving Henry some. Then he moved on to dessert. (Still before anyone else was eating.) He cooperated pretty well for about the first hour. He requested something out of a vending machine, and I was willing to comply to keep him quiet. But it seems that they turn off the machines on the weekends. So that really threw him. "The machines ARE working mommy!" By the time Kate was introduced (the main thing we were there to see, duh) both boys were screeching and running down the hall to the gym. We then retreated outside. That's bad.
I took the boys over to the playground. They clamored right up onto the equipment, started laughing and running around and racing back and forth on the "wobbly bridge." Henry went over to a chain ladder wall. He twisted his arms around the chains and said "I'm stuck in the chains! Please help me!" DID YOU READ THAT? HE WAS PRETENDING! I will have to ask his teacher- this must be something they've done at school before. So I would pretend to free him from the chains and then we'd do it again. Then we'd say "let's get away from those chains!" and run to the other side of the playground.
This was all so new. The "old" Henry never used to want to play on the playground. He either seemed afraid, or just unsure about what he was supposed to do, and kind of wondered what the point was. I can tell they've been working on it at school. This was very different. That's good.
___________
I think this will be a good spring break for Henry. He had a lot of fun with one other boy on Friday, jumping on L's trampoline. He had so much fun, in fact, that he got injured and broke his glasses! The injury is sort of a "burn" caused by face-planting on the trampoline. And the glasses were easily fixed at the eye doctor's office the same evening. It's so great to see him playing like such a boy.
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