So last week we visited the doctor twice for Henry's ear infection, and on Friday were assured that it was all cleared up, and that the remaining coughing, runny nose, and general unhappiness were the virus that was running its course. Yesterday afternoon Henry seemed pretty worn out by the end of the day, but I dosed him up with Motrin and we went to his swimming lesson.
Last night as Henry was falling asleep, he asked me to rub his right ear (the left was the infected one). He kept saying that it hurt, and kept wiggling his legs the way you do when you're in pain- writhing would be the way to describe it. Henry NEVER complains, which is one reason it's hard to figure out what's wrong with him. This was the most discomfort I had ever seen him in.
I suspected swimmer's ear. I called the doctor on call, but by the time he called back, Henry was asleep. This morning I gave him Motrin again and sent him to school. I feel sick with guilt about doing that, but I just can't miss weeks of work at a time when my kid has a series of cold symptoms, and maybe has swimmer's ear.
His teacher called me at around 11:15 and said that Henry's balance seemed to be off- he was bumping into things and almost fell over when he stood up to go look at his picture schedule! I was pretty close to getting hysterical. Although I know that ear problems would of course affect his balance, I was sure that it was something much more horrible and rare...
When I picked him up at school he climbed up on my lap and vomited on me. His teachers put him into his spare clothes, but I of course had none. It was noon, and we couldn't see the doctor until 1. So I stopped at TJ Maxx, right down the street. (Shopping with vomit on my work clothes. I have no shame.) In the checkout lane Henry started seeming like he was going to throw up again. So I left my cart and bolted out to the parking lot. He threw up, I put him in the van, drove up and parked right by the front of the store, went back in and finished my purchase. Luckily I had bought this soft fleece blanket, because Henry needed to take off his shirt. I took him into the doctor's office with no shirt, wrapped in a blanket.
The doctor confirmed swimmer's ear and gave us some drops. When we got out to the car, Henry vomited again, on the new blanket.
We stopped at Border's to buy a copy of the just-released-today Lady and the Tramp Special Edition. (Henry always says the "special edition" part.) He waited in the van again.
We came home, he threw up again, watched Lady and the Tramp, and then he fell asleep in my lap. I'm sorry that he is feeling so bad, but it's been a long time since he fell asleep in my lap like that. I sat and looked at him for a long time, thinking about all the times I've gazed at that sleeping face.
I'm not sure whether he has another bug that's causing all the vomiting. The doctor said that if he's in that much pain, it may be enough to make him throw up. Swimmer's ear is about one of the most painful things a child can go through.
I just hate when we have stretches like this, where it seems like he just can't get healthy.
Tuesday, February 28, 2006
Monday, February 27, 2006
church
We attend this church. Bill grew up attending here- I think his grandparents were even married here, as were his parents and his sister. We were not church-goers at the time we got married (and were married in a park shelter house on a rainy day), but started back to Trinity when Henry was an infant and Kate was 9 or 10.
Things went well when Henry was pre-school age. He would spend the first 2/3rds of the service in the nursery and then come down for communion, another prayer, song, and dismissal. But once he was old enough to go to Sunday school, our troubles began. Really I should say my troubles, because as I try to write about this I realize that some of this stuff is all in my head.
The Sunday school program is very small and I felt unsure about how Henry would do in the class. I didn't want to stay there with him, though, as I felt that would make Henry seem or feel more different, or make the other parents/teachers think he was un-managable or un-teachable. I should have just had a talk with the teacher. But at the time, Henry did not yet have a diagnosis of any kind, so it would have just been me saying "my child has speech delays and you have to say things to him in just the right way and sometimes he won't want to participate and will just want to do a puzzle in the corner. OK?"
He couldn't tolerate an entire church service, and I refuse to have him go to the nursery when he's clearly too old. So we just didn't go to church much. Which was a disappointing solution for all of us. This fall we decided to give it a try again. Unfortunately, the church was being remodeled at the time, so services were being held in the basement, in the coffee hour area, rather than the majestic high-ceilinged, stain-glass-windowed space Henry was used to. That was a disaster. He kept loudly proclaiming that he wanted to go back to the "red room" (the main front doors to the church are red.)
So for the past 5 months or so, Bill and I have been alternating Sundays- one of us takes Kate and Thomas to church, the other one stays home with Henry. It has worked ok. But yesterday Bill had a basketball tournament game, and I had been asked to watch the nursery. So Henry came along to church.
We were all excited to see the re-done sanctuary, which was just re-opening. They had a brass trio or quartet playing. I stopped to have the boys look at the beautiful church and listen to the music. Henry wanted to sit right down in a pew, but I had to force him to come upstairs to the nursery. While we were up there he kept asking to go back down to church, "say a prayer and sing a song." Almost the entire service is printed in the bulletin, so I started reading that to him. He sat and listened attentively, and when I had to get up to play with the kids, I saw him "reading" the bulletin on his own.
Then I tried to sing a song. The first one that came to mind was the Hallelujah chorus from "Messiah". I started singing that, and Henry said "No. We are marching in the light of God." That is a song that we sang months ago, possibly the last time Henry had attended church. And he remembered it. My heart was so touched, and I also felt a little twinge of guilt (don't we always?!)
He really enjoys going to church, and I should not keep him from it. Have any of you found ways to make church (or going to movies, or any other hour-plus need-to-be-quiet situation) work for your ASD kid?
Should we just muddle through Sunday school? Maybe it will go better now that Henry has established some good habits at school. And I might have better information to give the Sunday school teacher.
Things went well when Henry was pre-school age. He would spend the first 2/3rds of the service in the nursery and then come down for communion, another prayer, song, and dismissal. But once he was old enough to go to Sunday school, our troubles began. Really I should say my troubles, because as I try to write about this I realize that some of this stuff is all in my head.
The Sunday school program is very small and I felt unsure about how Henry would do in the class. I didn't want to stay there with him, though, as I felt that would make Henry seem or feel more different, or make the other parents/teachers think he was un-managable or un-teachable. I should have just had a talk with the teacher. But at the time, Henry did not yet have a diagnosis of any kind, so it would have just been me saying "my child has speech delays and you have to say things to him in just the right way and sometimes he won't want to participate and will just want to do a puzzle in the corner. OK?"
He couldn't tolerate an entire church service, and I refuse to have him go to the nursery when he's clearly too old. So we just didn't go to church much. Which was a disappointing solution for all of us. This fall we decided to give it a try again. Unfortunately, the church was being remodeled at the time, so services were being held in the basement, in the coffee hour area, rather than the majestic high-ceilinged, stain-glass-windowed space Henry was used to. That was a disaster. He kept loudly proclaiming that he wanted to go back to the "red room" (the main front doors to the church are red.)
So for the past 5 months or so, Bill and I have been alternating Sundays- one of us takes Kate and Thomas to church, the other one stays home with Henry. It has worked ok. But yesterday Bill had a basketball tournament game, and I had been asked to watch the nursery. So Henry came along to church.
We were all excited to see the re-done sanctuary, which was just re-opening. They had a brass trio or quartet playing. I stopped to have the boys look at the beautiful church and listen to the music. Henry wanted to sit right down in a pew, but I had to force him to come upstairs to the nursery. While we were up there he kept asking to go back down to church, "say a prayer and sing a song." Almost the entire service is printed in the bulletin, so I started reading that to him. He sat and listened attentively, and when I had to get up to play with the kids, I saw him "reading" the bulletin on his own.
Then I tried to sing a song. The first one that came to mind was the Hallelujah chorus from "Messiah". I started singing that, and Henry said "No. We are marching in the light of God." That is a song that we sang months ago, possibly the last time Henry had attended church. And he remembered it. My heart was so touched, and I also felt a little twinge of guilt (don't we always?!)
He really enjoys going to church, and I should not keep him from it. Have any of you found ways to make church (or going to movies, or any other hour-plus need-to-be-quiet situation) work for your ASD kid?
Should we just muddle through Sunday school? Maybe it will go better now that Henry has established some good habits at school. And I might have better information to give the Sunday school teacher.
Thursday, February 23, 2006
miscommunication
I always cut Henry's hair myself, when he's in the bathtub. He doesn't like having it done, especially the part around his ears and close to his neck. A few months ago, when I was trimming his hair, he moved suddenly and I poked him around his jawline, near his ear. It hurt a little and bled a little and I felt terrible and apologized profusely.
So this weekend I was cutting his hair again, and the elephant who never forgets said "I don't want you to poke me." I said, of course that I wouldn't and I was very sorry that happened before and that he needed to sit very still. (Which he did, so maybe the little injury made a point- ha ha, funny pun, eh?) Anyway, he wanted to keep talking about the poking incident. He said "I'm sorry I poked you." (Wanting me to repeat that, which I did.) Then he said "I poked you right in the eye."
I was a little irritated that he was revising history to make my mistake even worse! I can only assume that he's heard that phrase- "poked right in the eye"- before and was using the whole string of words, not realizing that he should say "poked you right in the face" or something else that would be more accurate.
Anyway, it was funny because he kept repeating that I had poked him in the eye with the scissors, and I kept getting more panicked and trying to correct him. I sure hope his teachers don't believe everything he says!
So this weekend I was cutting his hair again, and the elephant who never forgets said "I don't want you to poke me." I said, of course that I wouldn't and I was very sorry that happened before and that he needed to sit very still. (Which he did, so maybe the little injury made a point- ha ha, funny pun, eh?) Anyway, he wanted to keep talking about the poking incident. He said "I'm sorry I poked you." (Wanting me to repeat that, which I did.) Then he said "I poked you right in the eye."
I was a little irritated that he was revising history to make my mistake even worse! I can only assume that he's heard that phrase- "poked right in the eye"- before and was using the whole string of words, not realizing that he should say "poked you right in the face" or something else that would be more accurate.
Anyway, it was funny because he kept repeating that I had poked him in the eye with the scissors, and I kept getting more panicked and trying to correct him. I sure hope his teachers don't believe everything he says!
Tuesday, February 21, 2006
stuff bouncing around my head today
-Henry's ear is infected again. Last month when this ear was infected, it was draining. I saw one doctor in the practice, and maybe I misunderstood him- I thought that the tubes Henry got 3 years ago were still doing their job. Henry didn't seem to be in any discomfort, but just had this gunk coming out of his ear. Now this time he is really miserable, but the ear is not draining. We saw a different doctor, and when I asked why it wasn't draining, he said that last time was a worse infection, which had perforated the eardrum. That this infection wasn't as bad. (So why does Henry seem to feel so much worse?!) I just hate leaving the doctor's office more confused than when I went in!
Henry did not cooperate as well with the doctor this time (surely because he felt like crap). We have to go back again in two weeks to make sure the infection's gone. Am I starting this whole thing again???!!! One ear infection after another until my child needs surgery? Ugh.
-Lots of times Henry is more agreeable for his sister. When she is able to help get him dressed or give him medicine I am so relieved. Yesterday morning (which, no surprise, was frustrating for me) I asked her to start getting up earlier and helping me with Henry in the mornings again (I didn't ask during basketball season.) This morning she did not get up. And Henry specifically asked for her to give him his medicine. I went in her room and yelled at her. Now, I already feel bad when I do that- both frustrated with her and also with myself for "losing my cool." But let me tell you what makes a crappy morning even worse: when you come back downstairs after yelling at your teenager and your sick, pitiful, 6-year-old PDD kid looks at you with wide, sad, eyes and says "please stop arguing."
Oh my God. I wanted to crawl into the cupboard under the sink and just stay there for awhile. Henry has always been so sensitive to the emotions of others. He becomes upset whenever anyone in his vicinity is upset. Do any of your kids seem to be ultra-sensitive to emotions?
My dad, who seems to share some of Henry's traits, says that when he walks into a room he soaks up the emotions like a sponge. Because of that, some situations just prove too much for him and he has to shut down or get out of there. It's clear that Henry shares that ability.
I was actually, once I could think about it clearly, proud of Henry for using those words. I told him that I was just frustrated because Kate wasn't listening to my words, and that sometimes people in families get frustrated with each other, blah blah blah. So he will probably go to school today and say "I want my mommy to stop arguing" and his teachers will all think I'm a psycho.
-Henry's teacher sent home a form that I had not seen before, but that I found helpful- a pre-planning sheet for his IEP. I had to send it back in today but asked to get a copy back and then I will share some of it here.
-Sal posted something from someone else's blog. I frankly didn't read the whole thing because I got upset around the part where it's revealed that the kid's autism is all the mom's fault. So sorry. But there was some discussion of hugging-type therapy, and that I can relate to.
Henry really likes to "roughhouse". Tickling, rolling around on the floor, climbing on his dad or me, etc. And the urgency with which he sometimes solicits it makes me think that this physical contact serves a very basic sensory need for Henry. I wonder if any other kids seem to really need to have an outlet like that? Henry does like to snuggle too. But the roughhousing thing is different. It's like he can't let it go, even once the other person has made it clear that s/he is finished with the roughhousing. Or he'll do something weird, like try to put his foot in your mouth. You push the foot away, but he just keeps doing it, again and again and again until someone gets mad.
I'm very intrigued by the whole thing and wonder what purpose it serves for Henry, or how to better meet that need. I suppose I could meet with a sensory integration specialist or whatever they might be called.
Henry did not cooperate as well with the doctor this time (surely because he felt like crap). We have to go back again in two weeks to make sure the infection's gone. Am I starting this whole thing again???!!! One ear infection after another until my child needs surgery? Ugh.
-Lots of times Henry is more agreeable for his sister. When she is able to help get him dressed or give him medicine I am so relieved. Yesterday morning (which, no surprise, was frustrating for me) I asked her to start getting up earlier and helping me with Henry in the mornings again (I didn't ask during basketball season.) This morning she did not get up. And Henry specifically asked for her to give him his medicine. I went in her room and yelled at her. Now, I already feel bad when I do that- both frustrated with her and also with myself for "losing my cool." But let me tell you what makes a crappy morning even worse: when you come back downstairs after yelling at your teenager and your sick, pitiful, 6-year-old PDD kid looks at you with wide, sad, eyes and says "please stop arguing."
Oh my God. I wanted to crawl into the cupboard under the sink and just stay there for awhile. Henry has always been so sensitive to the emotions of others. He becomes upset whenever anyone in his vicinity is upset. Do any of your kids seem to be ultra-sensitive to emotions?
My dad, who seems to share some of Henry's traits, says that when he walks into a room he soaks up the emotions like a sponge. Because of that, some situations just prove too much for him and he has to shut down or get out of there. It's clear that Henry shares that ability.
I was actually, once I could think about it clearly, proud of Henry for using those words. I told him that I was just frustrated because Kate wasn't listening to my words, and that sometimes people in families get frustrated with each other, blah blah blah. So he will probably go to school today and say "I want my mommy to stop arguing" and his teachers will all think I'm a psycho.
-Henry's teacher sent home a form that I had not seen before, but that I found helpful- a pre-planning sheet for his IEP. I had to send it back in today but asked to get a copy back and then I will share some of it here.
-Sal posted something from someone else's blog. I frankly didn't read the whole thing because I got upset around the part where it's revealed that the kid's autism is all the mom's fault. So sorry. But there was some discussion of hugging-type therapy, and that I can relate to.
Henry really likes to "roughhouse". Tickling, rolling around on the floor, climbing on his dad or me, etc. And the urgency with which he sometimes solicits it makes me think that this physical contact serves a very basic sensory need for Henry. I wonder if any other kids seem to really need to have an outlet like that? Henry does like to snuggle too. But the roughhousing thing is different. It's like he can't let it go, even once the other person has made it clear that s/he is finished with the roughhousing. Or he'll do something weird, like try to put his foot in your mouth. You push the foot away, but he just keeps doing it, again and again and again until someone gets mad.
I'm very intrigued by the whole thing and wonder what purpose it serves for Henry, or how to better meet that need. I suppose I could meet with a sensory integration specialist or whatever they might be called.
Sunday, February 19, 2006
Happy Birthday Thomas
Dear Tommy,
When I was pregnant with you, I often told other parents that I hoped the second baby would be "easier". Not that Henry was a difficult child at all. But he did have his health problems. And those, added to all the weirdness that comes with being a new mom, added up to some stress for me.
I hoped that this time it would be "easier" because we would be more confident. We wouldn't be as scared and unsure. I wanted to enjoy you more. (Does every parent want that? Is that part of why we keep having more children? To try to re-capture the babyness and "appreciate" it more? It is so fleeting.)
So, today you turned 2 years old and I wonder how that happened. I have appreciated you, every minute of every day, but yet you still grew out of a baby and into a toddler. Right before my eyes. Lately I have been thinking about it and wishing that you could stay this way a little bit longer. Your godmother wisely reminded me that 2 years old is great, but so is 8 years old. So I guess I'll let you keep growing up. (Yeah, right, as if I have a choice!)
So far raising you does seem a little "easier", as far as the worrying goes. But it seems more bittersweet. (That is a word that a lot of my mommy friends use.) With Henry it seems like I just jumped right into motherhood and floundered around. With you, the road is more familiar, so maybe I have more time to look around me and enjoy the scenery.
You are so precious to me- truly, almost everything you do leaves me grinning like a love struck drunk or something. Even in church when you declare "take shirt off" and then start jumping on my lap like I'm a trampoline. Or when you won't poop in the potty but then poop on the floor and come to tell me. I want to document some of the extra-cute things you do, so that I can always remember:
You like to say "Oh! See mommy, see!" And then show me a toy or a book or whatever. Sometimes you say "Oh mon!" and you sound Jamaican.
Every once in awhile, when the stars are aligned just right, you put your face very close to mine and give me a kiss on the lips, without me even asking! L told me that one day you did that to her and said "I love you."
You like to hop up and down a lot-especially to entertain the "babies" at L's house. You love babies, which always amuses me, because I think you are just a baby yourself.
You never want to sit in your booster seat, but always at a big chair at the table, just like Bubba.
Sometimes you say "OH! Mommy- turtle scare me!" But I don't think you're really that scared, because you keep on watching the turtles.
You like to "roughhouse", especially with daddy and Bubba.
When you sneeze, and I say "God bless you", you always say "God bless you too Mommy." When I say "you're a neat kid, Tommy" you say "mommy neat kid."
You are different from your brother and sister in that you will try new food without missing a beat. In fact, whenever I am trying to eat anything, you climb up on me and say "my do, my do"
Lately you have wanted to climb up and jump. From any piece of furniture or even something like Daddy's lunchbox. Sometimes you count: "one, two, three, seven, eight, nine, ten! JUMP!"
I think you had a fun day today. You seemed to sort of "get it" that it was your birthday. We hung up the "happy birthday" banner and you were pretty excited about that. You pointed at it and said "ABCDEFG!"
You waited at the door for Grandma and Grandpa to come. Tanner and her mom got you that water table that really seems to be for outside in the warmer weather. But I filled it up in the laundry room and let you play in it. Then I emptied it out, but you got Grandpa to fill it up for you again. I wonder where I learned to be such a spoiler?!
You enjoyed blowing out your candles, and got your Grandpa to re-light them at least a dozen times and then help you blow them out, over and over. Finally I told you 2 more times, but then wasn't paying attention. Henry was sure to point out when your two more times were up!
You had a great day, but didn't have a nap. So it was an early bedtime tonight. Today you gave me lots of hugs and kisses. I told you that I loved you and that I'm so glad you came into my life 2 years ago. You have made me so happy.
I promise I will always love you this much.
Happy Birthday.
Friday, February 17, 2006
I finally got another roll of film developed and put on a disk. Here are the boys admiring the zoo map, hung up next to Henry's bed. Henry loves to hold on to the map and study it while we're at the zoo. Last time he noticed the 10-foot-tall version of the map near the front gate and said "you want that poster to hang in your room." Imagine if the zoo sold billboard-size posters of their map! If we all lived in Henry's world, they would. So, I offered to hang up the smaller size map. I was happy to catch them both admiring it together, and talking about the different areas we had visited. I have been in a reflective mood lately. (Is that the right word? Kind of sounds like I'm covered in reflective tape.) This month marks Tommy's 2nd birthday and the 13th (!!) anniversary my first date with my husband. It was also about a year ago that Henry left his first preschool and started attending the half-day special needs class, which was an equal disaster.
On that note, I will talk about our conference with Henry's teacher: It was a beautiful 40 minutes, filled with "he's doing really well. I love having him in my class. All the service providers agree that his behavior has improved 100%." Stuff like that. She feels that he is ready to start "inclusion" with the regular kindergarten class. They will start off by joining one of the special areas: art, music or gym. Ms. H asked Henry every day for a week which one he would like to attend, and every time he answered art. So he will start attending art class with the kindergartners ASAP. Ms. H will be with him the entire time.
His reading and math skills are coming along well, right in line with regular kindergarteners, according to Ms. H. And his aggression is almost totally gone. He did have one incident last week when he BIT another child! We've had lots of problems with scratching and pinching, but never biting. I asked Henry about it, and he said "you were being a snake!" So I mentioned that to Ms. H, that it sounded like Henry was pretending when he bit the other child. She kind of smiled in a knowing way (not unkindly) and said "I don't think he was pretending." So I can't figure that out- I know I'm a big sucker, but does he have me that fooled? Did he lie to me?
Tuesday, February 14, 2006
because I love you
To celebrate the sappy and sentimental holiday today, I thought I would share some sweet gestures my kids have shown me lately:
-One day last week I was kneeling down, helping Henry get dressed for school. He looked at me and said "you want a hug." Then he wrapped his arms around my neck and climbed onto my lap. I think he was watching tv over my shoulder, but I don't care. He stayed that way for a long time, giving me a real hug. I started rocking back and forth. Then I felt Henry start to rock too. What could be better?
-Kate bought me flowers at school one day- they were selling them for winter homecoming. A pretty bunch of purple-ish mums. She called to be picked up from basketball practice and asked if I could pick her up (as opposed to her dad, who had answered the phone). Then when I got there she pulled them out of her sweatshirt pocket to surprise me.
-Lately when I pick Tommy up and put him on my hip, he reaches his little hand around the back of my neck and twists it in my hair. I love this! Even though his hand is often sticky and he tears out pieces of my hair, I still love it. I will have to keep growing my hair out.
- OK, this isn't so sweet, but is funny: I dug out an old pair of Henry's sneakers, the next size up from what Tommy is wearing now. They feature Blue's Clues. Thomas found them and was SO SO excited. He insisted on putting them on right away, and has worn them to bed the past 2 nights. I have to wait for him to fall asleep, then go in and take them off. If he does it again I will have to take a picture. My son is so under-privileged that he is this excited about hand-me-down shoes. Wait 'til he figures out that he can go to the store and actually pick out a new pair!
- Henry's little class is having a party today. Thank goodness there are only 4 other kids in his class, because his enthusiasm for addressing valentines was maxxed out after 3 + one for his swimming instructor. But I was very happy with the 4 he addressed with my "assistance." They will be having Wendy's for lunch today for their "party." Tomorrow afternoon Bill and I have our conference with his teacher.
- This morning in the shower I heard James Taylor's Your Smiling Face. That is one of those songs that always make me think about my kids and smile, and it set the perfect tone for Valentine's Day. What are some songs that make you instantly happy when you hear them? I'm going to think about this today and add others as I think of them...
-One day last week I was kneeling down, helping Henry get dressed for school. He looked at me and said "you want a hug." Then he wrapped his arms around my neck and climbed onto my lap. I think he was watching tv over my shoulder, but I don't care. He stayed that way for a long time, giving me a real hug. I started rocking back and forth. Then I felt Henry start to rock too. What could be better?
-Kate bought me flowers at school one day- they were selling them for winter homecoming. A pretty bunch of purple-ish mums. She called to be picked up from basketball practice and asked if I could pick her up (as opposed to her dad, who had answered the phone). Then when I got there she pulled them out of her sweatshirt pocket to surprise me.
-Lately when I pick Tommy up and put him on my hip, he reaches his little hand around the back of my neck and twists it in my hair. I love this! Even though his hand is often sticky and he tears out pieces of my hair, I still love it. I will have to keep growing my hair out.
- OK, this isn't so sweet, but is funny: I dug out an old pair of Henry's sneakers, the next size up from what Tommy is wearing now. They feature Blue's Clues. Thomas found them and was SO SO excited. He insisted on putting them on right away, and has worn them to bed the past 2 nights. I have to wait for him to fall asleep, then go in and take them off. If he does it again I will have to take a picture. My son is so under-privileged that he is this excited about hand-me-down shoes. Wait 'til he figures out that he can go to the store and actually pick out a new pair!
- Henry's little class is having a party today. Thank goodness there are only 4 other kids in his class, because his enthusiasm for addressing valentines was maxxed out after 3 + one for his swimming instructor. But I was very happy with the 4 he addressed with my "assistance." They will be having Wendy's for lunch today for their "party." Tomorrow afternoon Bill and I have our conference with his teacher.
- This morning in the shower I heard James Taylor's Your Smiling Face. That is one of those songs that always make me think about my kids and smile, and it set the perfect tone for Valentine's Day. What are some songs that make you instantly happy when you hear them? I'm going to think about this today and add others as I think of them...
Thursday, February 09, 2006
the downside to using his words
I'm so happy with Henry's language. He says beautiful things all day long that I try and try to burn into my brain so I can remember them and write them down- but they're gone by the time I get here. If I could only drink caffeine!!
But some days all those great words serve to torture me. Like a couple weeks ago, when I discovered some dried crud in Henry's ear and we visited the doctor. Henry chatted, in his unique way, with the pediatrician, and was doing great while the doctor listened to his heart, etc. (The pediatrician's office has historically been the scene of much screaming and crying for Henry.) But when it came time to look in the ears, Henry backed away from the doctor and let out a whine.
So I hopped up and said "let me give you a hug" and held him tight while the doctor looked in the ears. As I was squeezing him tight, with my ear against the top of his head, the whine turned into "Please stop. Please stop. Please stop. Please stop." Those words cut me like a knife. I would rather hear the crying and screaming. I kind of mumbled "good job using your words Henry." gulp, choke.
When we left the doctor's office, I told Henry that we would go to Kroger to get his prescription filled. I failed to communicate that first we needed to make about 4 other stops! (Pick up Tommy, get Kate at home, take her to basketball practice, put gas in the van because it was REALLY on empty.) So the entire time we were making all those other stops, Henry was chanting, non-stop, "you want to go to Kroger. I want to go to Kroger mommy. Mommy, I want to go to Kroger. I want to go to Kroger please..."
Even better, his little shadow started chiming in "yeah, troger mommy, troger. TROGER MOMMY TROGER NOW!"
I never imagined I would say this, but that particular day, I just wished Henry would stop talking!
But some days all those great words serve to torture me. Like a couple weeks ago, when I discovered some dried crud in Henry's ear and we visited the doctor. Henry chatted, in his unique way, with the pediatrician, and was doing great while the doctor listened to his heart, etc. (The pediatrician's office has historically been the scene of much screaming and crying for Henry.) But when it came time to look in the ears, Henry backed away from the doctor and let out a whine.
So I hopped up and said "let me give you a hug" and held him tight while the doctor looked in the ears. As I was squeezing him tight, with my ear against the top of his head, the whine turned into "Please stop. Please stop. Please stop. Please stop." Those words cut me like a knife. I would rather hear the crying and screaming. I kind of mumbled "good job using your words Henry." gulp, choke.
When we left the doctor's office, I told Henry that we would go to Kroger to get his prescription filled. I failed to communicate that first we needed to make about 4 other stops! (Pick up Tommy, get Kate at home, take her to basketball practice, put gas in the van because it was REALLY on empty.) So the entire time we were making all those other stops, Henry was chanting, non-stop, "you want to go to Kroger. I want to go to Kroger mommy. Mommy, I want to go to Kroger. I want to go to Kroger please..."
Even better, his little shadow started chiming in "yeah, troger mommy, troger. TROGER MOMMY TROGER NOW!"
I never imagined I would say this, but that particular day, I just wished Henry would stop talking!
Monday, February 06, 2006
overheard this weekend
(Cough, cough from upstairs)
Bill (calling up the stairs): "Henry?"
Henry: "Yes Daddy?"
Bill: "Are you OK?"
Henry: "Yes Daddy."
Bill: "Good. I love you buddy."
Henry: "I love you too Daddy."
That may seem like a pretty boring exchange to some of you, but would not have happened at our house 6 months ago. Bill came smiling around the corner and said "did you hear that?!"
------------------------------
(Tommy is carrying around something of Henry's)
Henry: "Tommy, may I have that please?" (Said in a quiet voice, not the house-on-fire voice that you might expect.)
Tommy: "Bubba, here go." (Hands it over.)
Henry: "Thanks Tommy."
------------------------------
These are the little things that autistic kids need help with. These are the things that his teachers work on all day, every day. And it's working- he's getting it- it just takes a lot of time and a lot of persistence and a lot of patience.
I've realized that a good, quick way to explain the differences in parenting these two boys is this: I can tell Thomas "oh, don't touch that Tommy, that's not safe." And he's likely to stop touching the thing and reply "not safe mommy." (That's not to say that he listens all the time, of course.)
But if I were to say the same thing to Henry, especially when he was younger, he would have responded by screaming at me. Either because he didn't understand the concept of "not safe" or because he thought he was in trouble, or because he just didn't like being told "no"... I can't say why exactly.
But parents of autistic children sometimes have to find sneaky ways to communicate with their kids. We have to pussyfoot around saying "no", or trick them into stopping the thing they're doing, or into eating something new. That's what's so exhausting about it. And hard to make others understand.
Henry and I have to go through this little ritual when he takes medicine. It's MUCH MUCH MUCH, a thousand times easier than it used to be. But still, we have to talk about how he doesn't want to take this medicine, etc. Several years ago he was prescribed some cold medicine that was purple. Ever since, every time he takes medicine, he says "which medicine do you like the best?" (wanting me to pose that question to him) So I ask him, and he responds "the purple medicine." Then he opens his mouth to take the current medicine. Why do we have to have this little exchange every time? It somehow comforts him, or makes him think all is right with the world, if we talk about the purple medicine first.
Getting in the car in the morning is similar. Bill is already at work, so every day Henry says "you miss your daddy." And I have to figure out which of the responses will comfort him today: "He's at work." "You'll see him later." "He misses you too." "I miss him too." "We'll all be together tonight." I try a couple of these and then Henry repeats the one he likes. Then I tell him I love him and shut the car door.
I'm trying to keep a notebook around so I can jot down things that both the boys say. Here's one more:
Henry: "You want some jigsaw fruit."
Kate: "Jigsaw fruit? What's that?"
Henry: "It has cherries and pineapple and peaches and grapes."
Jigsaw fruit = fruit cocktail
Bill (calling up the stairs): "Henry?"
Henry: "Yes Daddy?"
Bill: "Are you OK?"
Henry: "Yes Daddy."
Bill: "Good. I love you buddy."
Henry: "I love you too Daddy."
That may seem like a pretty boring exchange to some of you, but would not have happened at our house 6 months ago. Bill came smiling around the corner and said "did you hear that?!"
------------------------------
(Tommy is carrying around something of Henry's)
Henry: "Tommy, may I have that please?" (Said in a quiet voice, not the house-on-fire voice that you might expect.)
Tommy: "Bubba, here go." (Hands it over.)
Henry: "Thanks Tommy."
------------------------------
These are the little things that autistic kids need help with. These are the things that his teachers work on all day, every day. And it's working- he's getting it- it just takes a lot of time and a lot of persistence and a lot of patience.
I've realized that a good, quick way to explain the differences in parenting these two boys is this: I can tell Thomas "oh, don't touch that Tommy, that's not safe." And he's likely to stop touching the thing and reply "not safe mommy." (That's not to say that he listens all the time, of course.)
But if I were to say the same thing to Henry, especially when he was younger, he would have responded by screaming at me. Either because he didn't understand the concept of "not safe" or because he thought he was in trouble, or because he just didn't like being told "no"... I can't say why exactly.
But parents of autistic children sometimes have to find sneaky ways to communicate with their kids. We have to pussyfoot around saying "no", or trick them into stopping the thing they're doing, or into eating something new. That's what's so exhausting about it. And hard to make others understand.
Henry and I have to go through this little ritual when he takes medicine. It's MUCH MUCH MUCH, a thousand times easier than it used to be. But still, we have to talk about how he doesn't want to take this medicine, etc. Several years ago he was prescribed some cold medicine that was purple. Ever since, every time he takes medicine, he says "which medicine do you like the best?" (wanting me to pose that question to him) So I ask him, and he responds "the purple medicine." Then he opens his mouth to take the current medicine. Why do we have to have this little exchange every time? It somehow comforts him, or makes him think all is right with the world, if we talk about the purple medicine first.
Getting in the car in the morning is similar. Bill is already at work, so every day Henry says "you miss your daddy." And I have to figure out which of the responses will comfort him today: "He's at work." "You'll see him later." "He misses you too." "I miss him too." "We'll all be together tonight." I try a couple of these and then Henry repeats the one he likes. Then I tell him I love him and shut the car door.
I'm trying to keep a notebook around so I can jot down things that both the boys say. Here's one more:
Henry: "You want some jigsaw fruit."
Kate: "Jigsaw fruit? What's that?"
Henry: "It has cherries and pineapple and peaches and grapes."
Jigsaw fruit = fruit cocktail
Wednesday, February 01, 2006
Um, Sal? The next time you decide to kick your sadness out, could you please specify that it not find a new home in the midwest? But rather maybe across the Atlantic? Or in the White House somewhere? Because I'm afraid it's trying to shack up at my house, and I really don't have room for it.
I know, I know- read my own stupid "good things" post, and get over it.
It's just that the past couple days have been extra hectic and Henry's taking an antibiotic (duh, he hates it), Tommy needs drops in his eyes because some kind of eye crud is going around L's house, and...
Henry's driver got in an accident yesterday, before she had picked any kids up. She's ok, but that meant that yesterday Henry had to take his antibiotic AND get picked up by a different person in a different car. Whoa. Today she was back, but in a different car. "You don't want her to be in this white car! You want her to be in the black car!" Everything I said this morning was met with brilliant opposition by Henry. "It is not a school day! Tomorrow is a school day! It is not Wednesday! It is Thursday!" (That argument is a little flawed, as he would still have to go to school, whether it's Wednesday or Thursday.) "Do you want to just wear this shirt over your jammie shirt, so you'll be a little warmer?" "You will NOT be warmer! You will be COLDER!" "The chocolate donuts are NOT gone!"
Thomas didn't sleep very well last night- I kept bringing him in to our bed, but he always ends up kind of making an "H" between Bill and I, kicking one of us and slapping the other, like we are both in his way. How do some of you sleep with your kids every night? Tommy beats us up all night- as if we are in HIS bed, not the other way around.
OK, I always feel like I need to end on an up-note. So last night was "parents night" for the basketball team. Each player gets introduced along with her parents, and we walk out in front of the adoring crowd, shake hands with the coaches, and each mom gets a long-stemmed carnation. Some stress was caused by how we were going to coordinate this (I suggested we just bring the boys out with us, but Bill thought that might steal some of Kate's limelight or whatever). But it all worked out, a friend was able to watch the boys during that portion of the game. So the funny thing was that right before the boys and I left for home, Kate came up and asked me for some money. A woman next to me said "you're that girl's mom? You look so young!" So that was a nice compliment, but I was laughing because, not only had I been introduced earlier as Kate's mom, but I was also wearing a dorky black t-shirt that said "Kate's Mom" in big white letters on the back! Did that woman think I was masquerading as a teenager's mother?
OK, thanks. I feel better now.
I know, I know- read my own stupid "good things" post, and get over it.
It's just that the past couple days have been extra hectic and Henry's taking an antibiotic (duh, he hates it), Tommy needs drops in his eyes because some kind of eye crud is going around L's house, and...
Henry's driver got in an accident yesterday, before she had picked any kids up. She's ok, but that meant that yesterday Henry had to take his antibiotic AND get picked up by a different person in a different car. Whoa. Today she was back, but in a different car. "You don't want her to be in this white car! You want her to be in the black car!" Everything I said this morning was met with brilliant opposition by Henry. "It is not a school day! Tomorrow is a school day! It is not Wednesday! It is Thursday!" (That argument is a little flawed, as he would still have to go to school, whether it's Wednesday or Thursday.) "Do you want to just wear this shirt over your jammie shirt, so you'll be a little warmer?" "You will NOT be warmer! You will be COLDER!" "The chocolate donuts are NOT gone!"
Thomas didn't sleep very well last night- I kept bringing him in to our bed, but he always ends up kind of making an "H" between Bill and I, kicking one of us and slapping the other, like we are both in his way. How do some of you sleep with your kids every night? Tommy beats us up all night- as if we are in HIS bed, not the other way around.
OK, I always feel like I need to end on an up-note. So last night was "parents night" for the basketball team. Each player gets introduced along with her parents, and we walk out in front of the adoring crowd, shake hands with the coaches, and each mom gets a long-stemmed carnation. Some stress was caused by how we were going to coordinate this (I suggested we just bring the boys out with us, but Bill thought that might steal some of Kate's limelight or whatever). But it all worked out, a friend was able to watch the boys during that portion of the game. So the funny thing was that right before the boys and I left for home, Kate came up and asked me for some money. A woman next to me said "you're that girl's mom? You look so young!" So that was a nice compliment, but I was laughing because, not only had I been introduced earlier as Kate's mom, but I was also wearing a dorky black t-shirt that said "Kate's Mom" in big white letters on the back! Did that woman think I was masquerading as a teenager's mother?
OK, thanks. I feel better now.
Tuesday, January 24, 2006
some good things
Basketball season wears me out. Kate plays on the JV team and Bill coaches a 5th grade girls' team. I encouraged him to take on the coaching job because I know he really loves doing it. But those two teams combined take Bill and Kate out of the house just about every evening. We both work outside of the home all day long. My point here is that it's cold and dreary and the holidays are over and the two people closest to my conversation level are gone most of the time. And by the time they get home at 9 pm, all hyper from their practice or game, I'm ready to go to bed because I've been "snuggling" in Henry's dark room for 1/2 an hour.
So it's easy to start feeling negative. I have plenty of negative stuff I want to share with anyone who might read my blog, but I thought I'd try to focus on some positive things today. So, with apologies to Martha Stewart, here are some "good things":
1. Henry's swimming lesson yesterday. He has been taking lessons at Easter Seals since the summer of 2004, and I love to see his progress. It's not measured in leaps and bounds- he's no Charlie Fisher. But he runs over to the steps, hustles into the pool, greets his teacher with enthusiasm, and flounders around in the water- unafraid of going under, getting water in his nose, wearing goggles... If you had told me any of this a year and a half ago, I would scarcely have believed it. And yesterday, something new: he started planning what he wanted to say to his swim instructor! "I had a nice Christmas." He said, as we walked in from the parking lot. I deciphered that this must be what they talked about last time. So I suggested that this time he could tell her that he got his picture taken last week. Sure enough, I hear him in the pool talking about the mall and the Disney Store. Then he saw another instructor and shouted "there's Mr. Chris!" several times until we all acknowledged it and Mr. Chris said hello to him. Once Henry's lesson was over, he ran over to me and said "I had a great swimming lesson. I jumped off the edge. I swam under the water. I slided like Superman." (This is a thing they talk about, I guess to get him to stretch his arms and legs out straight?)
He said all those sentences using "I" spontaneously. And he almost sounded like an NT 6-year-old, babbling excitedly to his mom.
As if that weren't enough, then he started cheering for the kid who's lesson was after his! "Great swimming (kid's name)!"
2. One icy morning last week, traffic was really slow. But a really good song came on the radio (Matthew Sweet- "Girlfriend") and I took a sip of my decaf latte (I've recently had to give up caffeine because I was having heart palpitations- that's the saddest news of all), and I thought how good it tasted, even though it was decaf, and how much I was enjoying this drive, even though most people probably weren't.
3. Remember I was pondering getting a reptile pet of some kind? Well I mentioned it to a friend, and she said that she had two turtles that we could have!! So the turtles moved in yesterday, and they are so fun to watch! They live in an aquarium with a little "dock" that they can climb up onto, and they eat pellets of food you can buy at the grocery store. Very low maintenance and everything was free except that I needed to buy the food. I will get a picture up soon.
4. One night last week when we arrived home after picking Kate up from practice, we noticed that the stars were out. So the four of us stood in the driveway for a minute, looking at the stars. I started singing "twinkle twinkle" and Kate joined in with me.
5. Saturday morning, Henry and I were having our "it's Saturday." "That's right, it's Saturday" conversation. "It's not a school day." "No, it's the weekend. We all get to stay home together. Except poor daddy had to work this morning."
Henry said "don't cry daddy, you'll be fine."
6. Last week Henry's teacher wrote "Another wonderful day! Henry shared his book at lunch w/ another student (who is not even in our class). The aggression towards peers has really diminished as well. I think we will be ready to talk about some inclusion at our next conference."
I'm sure there are more, but I've neglected my sons in front of a DVD for long enough.
Some of my fellow bloggers have kids who are not verbal, or who are aggressive, or who scream. A lot. Or who are not quite potty-trained yet. Our family has been there- at age 3, 4, 5, and some of those struggles are on-going. But I just want to say that you and your children will move past this point. You will have a conversation. (S)he will stop having accidents. (S)he will start using words instead of screaming or hurting someone. You know that already, but I am just re-affirming it.
It's all good.
So it's easy to start feeling negative. I have plenty of negative stuff I want to share with anyone who might read my blog, but I thought I'd try to focus on some positive things today. So, with apologies to Martha Stewart, here are some "good things":
1. Henry's swimming lesson yesterday. He has been taking lessons at Easter Seals since the summer of 2004, and I love to see his progress. It's not measured in leaps and bounds- he's no Charlie Fisher. But he runs over to the steps, hustles into the pool, greets his teacher with enthusiasm, and flounders around in the water- unafraid of going under, getting water in his nose, wearing goggles... If you had told me any of this a year and a half ago, I would scarcely have believed it. And yesterday, something new: he started planning what he wanted to say to his swim instructor! "I had a nice Christmas." He said, as we walked in from the parking lot. I deciphered that this must be what they talked about last time. So I suggested that this time he could tell her that he got his picture taken last week. Sure enough, I hear him in the pool talking about the mall and the Disney Store. Then he saw another instructor and shouted "there's Mr. Chris!" several times until we all acknowledged it and Mr. Chris said hello to him. Once Henry's lesson was over, he ran over to me and said "I had a great swimming lesson. I jumped off the edge. I swam under the water. I slided like Superman." (This is a thing they talk about, I guess to get him to stretch his arms and legs out straight?)
He said all those sentences using "I" spontaneously. And he almost sounded like an NT 6-year-old, babbling excitedly to his mom.
As if that weren't enough, then he started cheering for the kid who's lesson was after his! "Great swimming (kid's name)!"
2. One icy morning last week, traffic was really slow. But a really good song came on the radio (Matthew Sweet- "Girlfriend") and I took a sip of my decaf latte (I've recently had to give up caffeine because I was having heart palpitations- that's the saddest news of all), and I thought how good it tasted, even though it was decaf, and how much I was enjoying this drive, even though most people probably weren't.
3. Remember I was pondering getting a reptile pet of some kind? Well I mentioned it to a friend, and she said that she had two turtles that we could have!! So the turtles moved in yesterday, and they are so fun to watch! They live in an aquarium with a little "dock" that they can climb up onto, and they eat pellets of food you can buy at the grocery store. Very low maintenance and everything was free except that I needed to buy the food. I will get a picture up soon.
4. One night last week when we arrived home after picking Kate up from practice, we noticed that the stars were out. So the four of us stood in the driveway for a minute, looking at the stars. I started singing "twinkle twinkle" and Kate joined in with me.
5. Saturday morning, Henry and I were having our "it's Saturday." "That's right, it's Saturday" conversation. "It's not a school day." "No, it's the weekend. We all get to stay home together. Except poor daddy had to work this morning."
Henry said "don't cry daddy, you'll be fine."
6. Last week Henry's teacher wrote "Another wonderful day! Henry shared his book at lunch w/ another student (who is not even in our class). The aggression towards peers has really diminished as well. I think we will be ready to talk about some inclusion at our next conference."
I'm sure there are more, but I've neglected my sons in front of a DVD for long enough.
Some of my fellow bloggers have kids who are not verbal, or who are aggressive, or who scream. A lot. Or who are not quite potty-trained yet. Our family has been there- at age 3, 4, 5, and some of those struggles are on-going. But I just want to say that you and your children will move past this point. You will have a conversation. (S)he will stop having accidents. (S)he will start using words instead of screaming or hurting someone. You know that already, but I am just re-affirming it.
It's all good.
Thursday, January 19, 2006
is this a stim?
It's 6 am, and Henry has been awake for over an hour. I find this really frustrating- every other day of the week, I have to drag him out of bed for school. But every once in awhile, I'm not sure what makes him wake up so early. He lies in bed laughing and making noises- imagining a scene from one of his favorite movies probably. Since he and Thomas share a room, I don't want to just leave him in there to wake his brother up too.
He asked to come downstairs. We have an extra room in the basement (I hesitate to call it "finished" But it's more finished than the rest of the basement) where the extra tv is, with the vcr attached, and he said he wanted to watch a movie. But now that we're down here, he is just watching The Disney Channel. Actually, now that it's 6, I can turn on everyone's favorite: Noggin.
The computer is in another little "finished" corner of the basement- so here I am.
Reading some of your blogs has raised some questions in my mind about self-stimulating behaviors- how to identify them and when to try to stop them. We have several little stockpiles of things that Henry likes to look at that I have attempted to hide around the house: He has 2 Power Ranger trick-or-treat bags full of various Power Ranger stuff, such as coloring book pages, pictures printed off of the internet, packaging for action figures, stickers, even old Toys R Us ads featuring Power Rangers, and handmade puzzles that various therapists have made for him because every week he kept asking for a "Power Ranger puzzle" and those seem to be hard to find.
I also have stashes of the "papers" that come in DVD boxes, giving further description of the contents of the DVD or advertising other movies. Another type of "paper" that Henry likes to look at are the ones you get in the mail, advertising for the Disney movie club. They show dozens of tiny little pictures of Disney movies. (Eileen, my son loves paper too!)
As I am describing all these things and realizing how strange it must sound to others, I realize that this is all clearly "stimming" stuff. What should I do about it? Up until now I have kept everything that Henry showed interest in. Because, as we all know, our kids don't show much interest in TOYS. I have always latched on to anything that he latched on to.
I put the Power Ranger stuff away for weeks at a time, but then something will make him think about it, or he'll spot the bags on a shelf in the basement and ask for them, and I give them to him, to spread out all over the floor and admire for a couple days. He does hum and dance around when he's doing that, but he also exhibits those behaviors when he's doing a puzzle or watching a show that he really likes. Some of his "stimmy" behaviors seem to be his way of showing pleasure, and his preschool teachers and I decided that we didn't need to try to stop those behaviors unless they were inhibiting another activity. (For example, during speech therapy they would ask him to have "quiet hands and feet" to help him focus on the work he was doing.)
His current teachers play off of his interests- his rewards for a good day are little laminated pictures of Power Rangers or other characters from the weird shows on Jetix. And I keep all of those.
Should I throw away all of this stuff? I welcome any and all opinions on this topic. Sometimes I worry that I am doing harm to Henry, rather than good. I start to question whether to encourage things he enjoys, no matter how odd they may be, or would I be doing him a favor, "freeing him" from the stim, if I got rid of the temptation?
He asked to come downstairs. We have an extra room in the basement (I hesitate to call it "finished" But it's more finished than the rest of the basement) where the extra tv is, with the vcr attached, and he said he wanted to watch a movie. But now that we're down here, he is just watching The Disney Channel. Actually, now that it's 6, I can turn on everyone's favorite: Noggin.
The computer is in another little "finished" corner of the basement- so here I am.
Reading some of your blogs has raised some questions in my mind about self-stimulating behaviors- how to identify them and when to try to stop them. We have several little stockpiles of things that Henry likes to look at that I have attempted to hide around the house: He has 2 Power Ranger trick-or-treat bags full of various Power Ranger stuff, such as coloring book pages, pictures printed off of the internet, packaging for action figures, stickers, even old Toys R Us ads featuring Power Rangers, and handmade puzzles that various therapists have made for him because every week he kept asking for a "Power Ranger puzzle" and those seem to be hard to find.
I also have stashes of the "papers" that come in DVD boxes, giving further description of the contents of the DVD or advertising other movies. Another type of "paper" that Henry likes to look at are the ones you get in the mail, advertising for the Disney movie club. They show dozens of tiny little pictures of Disney movies. (Eileen, my son loves paper too!)
As I am describing all these things and realizing how strange it must sound to others, I realize that this is all clearly "stimming" stuff. What should I do about it? Up until now I have kept everything that Henry showed interest in. Because, as we all know, our kids don't show much interest in TOYS. I have always latched on to anything that he latched on to.
I put the Power Ranger stuff away for weeks at a time, but then something will make him think about it, or he'll spot the bags on a shelf in the basement and ask for them, and I give them to him, to spread out all over the floor and admire for a couple days. He does hum and dance around when he's doing that, but he also exhibits those behaviors when he's doing a puzzle or watching a show that he really likes. Some of his "stimmy" behaviors seem to be his way of showing pleasure, and his preschool teachers and I decided that we didn't need to try to stop those behaviors unless they were inhibiting another activity. (For example, during speech therapy they would ask him to have "quiet hands and feet" to help him focus on the work he was doing.)
His current teachers play off of his interests- his rewards for a good day are little laminated pictures of Power Rangers or other characters from the weird shows on Jetix. And I keep all of those.
Should I throw away all of this stuff? I welcome any and all opinions on this topic. Sometimes I worry that I am doing harm to Henry, rather than good. I start to question whether to encourage things he enjoys, no matter how odd they may be, or would I be doing him a favor, "freeing him" from the stim, if I got rid of the temptation?
Wednesday, January 18, 2006
the photo
I hate to do this because my mom reads this, and now she won't be surprised by her valentine! But everyone else will be. Here is the one photo we got of the three kids. Henry is kind of looking down, but this is actually a really accurate representation of him when he's laughing, so in that way it's a good picture.
The photographer was confused by our family (as many people are). Kate has always looked older than she is (she'll be 16 in May) and I have always looked younger than I am. So it's not usually clear that I am the mom of these three kids. Until we go to the Disney Store, that is, and Kate asks me to buy her a stuffed Baloo bear!
The photographer was confused by our family (as many people are). Kate has always looked older than she is (she'll be 16 in May) and I have always looked younger than I am. So it's not usually clear that I am the mom of these three kids. Until we go to the Disney Store, that is, and Kate asks me to buy her a stuffed Baloo bear!
Tuesday, January 17, 2006
the mall
So- we survived the picture outing. I talked to Henry about it for several days- "Monday there's no school, and we're going to go to the mall and get your picture taken." Then Monday morning I dropped the bomb about the Disney Store. "If you do a good job at the picture place, then we can go to a store that's full of Disney stuff."
("Doing a good job" is kind of a vague instruction, but I didn't want to be too specific. If I said "you need to let the photographer take your picture 5 times" or something like that, then we'd have to count how many were snapped, etc. And I wanted to give him an expectation that was realistic- so we didn't have to run screaming from the mall. I told him he needed to be a good listener and cooperate.)
We had to discuss that for a little while. "You don't want to go to the picture place! You want to go to the Disney Store first, then go to the picture place! You like to go to the JC Penney picture place." That one surprised me- that he knew the name of the last place we had a family picture taken (in November of '04) and it made me laugh that he was saying he liked it, since that (like every other attempt at photo-taking we've ever endured) was a miserable experience.
Henry doesn't do well at photo studios. The silly things that the photographers do, in an attempt to make kids laugh, really freak Henry out. Those places are usually crowded and hot and full of stressed-out parents and crying kids. And this one was located right in the middle of the mall.
But I wanted to get Tommy's 2-year picture taken. I have totally dropped the ball with him as far as documenting his life in professional photos. And I had this fantasy of the boys wearing their matching maroon turtlenecks and Kate wearing her pink sweater, and we could mail them out for valentines.
I think I must be the only mom in America who doesn't take her kids to the mall. I honestly don't think I've ever taken either one of the boys to the mall in their lifetimes. It just doesn't sound fun to me. I think of shopping at the mall as an activity one should do just with other grownups. So, anyway, Henry and Thomas were both pretty excited about the mall. (Except Tommy kept calling it "the map" as a reference to Dora the Explorer, I guess.)
The photographer had this feather duster-type thing in his hand, and would go "aah, aah, aah, UGH!" and bonk himself, or me, in the face with it. That made the kids laugh the first couple times, but then it was too much for Henry. The photographer would say "aah..." and Henry would clamp his hands over his ears and yell "NOOO!" That doesn't make for a real attractive photo. You know how most families have several different poses to choose from? We just had one decent shot. Oh well, it makes my decision easier. Thomas didn't really pose very well for his individual pictures either. After we got a couple taken, he just started running for the door. Over and over. So we ended the session. I got a few good pictures and will try to scan them and post them here unless that's hugely illegal?
Things went better at the Disney Store. I forgot that Power Rangers are a Disney thing now- so Henry went straight for the Power Ranger stuff. The woman at the checkout was really nice and put the Power Ranger items in a separate bag for Henry to carry. He was excited about having his own bag! I told her that he has an Autism Spectrum Disorder and was really interested in Disney things. I was pleasantly surprised because (instead of having that uneasy look that some people get when you tell them) she said "oh, really? What school district do you live in? I have a friend whose daughter is on the spectrum and she really likes Disney stuff too. He's doing a great job." That little conversation made me feel very good for some reason.
And another "maybe I'm autistic too" experience- Tommy and I were playing outside last night. He was having fun, but I was kind of losing interest in throwing a ball around. Then Henry wanted to come out and join us, which is exciting, as he usually isn't interested in being outside. And he wanted to pick up sticks and pine cones. Cleaning up the yard. Now that seems like a worthwhile reason to be outside. I don't know, I could just really relate to picking things up and putting them in a yard waste bag. I must be old and losing my imagination. Or maybe I'm autistic too :-)
("Doing a good job" is kind of a vague instruction, but I didn't want to be too specific. If I said "you need to let the photographer take your picture 5 times" or something like that, then we'd have to count how many were snapped, etc. And I wanted to give him an expectation that was realistic- so we didn't have to run screaming from the mall. I told him he needed to be a good listener and cooperate.)
We had to discuss that for a little while. "You don't want to go to the picture place! You want to go to the Disney Store first, then go to the picture place! You like to go to the JC Penney picture place." That one surprised me- that he knew the name of the last place we had a family picture taken (in November of '04) and it made me laugh that he was saying he liked it, since that (like every other attempt at photo-taking we've ever endured) was a miserable experience.
Henry doesn't do well at photo studios. The silly things that the photographers do, in an attempt to make kids laugh, really freak Henry out. Those places are usually crowded and hot and full of stressed-out parents and crying kids. And this one was located right in the middle of the mall.
But I wanted to get Tommy's 2-year picture taken. I have totally dropped the ball with him as far as documenting his life in professional photos. And I had this fantasy of the boys wearing their matching maroon turtlenecks and Kate wearing her pink sweater, and we could mail them out for valentines.
I think I must be the only mom in America who doesn't take her kids to the mall. I honestly don't think I've ever taken either one of the boys to the mall in their lifetimes. It just doesn't sound fun to me. I think of shopping at the mall as an activity one should do just with other grownups. So, anyway, Henry and Thomas were both pretty excited about the mall. (Except Tommy kept calling it "the map" as a reference to Dora the Explorer, I guess.)
The photographer had this feather duster-type thing in his hand, and would go "aah, aah, aah, UGH!" and bonk himself, or me, in the face with it. That made the kids laugh the first couple times, but then it was too much for Henry. The photographer would say "aah..." and Henry would clamp his hands over his ears and yell "NOOO!" That doesn't make for a real attractive photo. You know how most families have several different poses to choose from? We just had one decent shot. Oh well, it makes my decision easier. Thomas didn't really pose very well for his individual pictures either. After we got a couple taken, he just started running for the door. Over and over. So we ended the session. I got a few good pictures and will try to scan them and post them here unless that's hugely illegal?
Things went better at the Disney Store. I forgot that Power Rangers are a Disney thing now- so Henry went straight for the Power Ranger stuff. The woman at the checkout was really nice and put the Power Ranger items in a separate bag for Henry to carry. He was excited about having his own bag! I told her that he has an Autism Spectrum Disorder and was really interested in Disney things. I was pleasantly surprised because (instead of having that uneasy look that some people get when you tell them) she said "oh, really? What school district do you live in? I have a friend whose daughter is on the spectrum and she really likes Disney stuff too. He's doing a great job." That little conversation made me feel very good for some reason.
And another "maybe I'm autistic too" experience- Tommy and I were playing outside last night. He was having fun, but I was kind of losing interest in throwing a ball around. Then Henry wanted to come out and join us, which is exciting, as he usually isn't interested in being outside. And he wanted to pick up sticks and pine cones. Cleaning up the yard. Now that seems like a worthwhile reason to be outside. I don't know, I could just really relate to picking things up and putting them in a yard waste bag. I must be old and losing my imagination. Or maybe I'm autistic too :-)
Sunday, January 15, 2006
progress
Friday Henry's teacher wrote this in his notebook (it sounds kind of goofy when I try to leave out other kids' names):
"Henry scratched (another child) today, but when I brought it to his attention, he got up, walked over to (him) and said 'I'm sorry (kid's name).' He did this completely independently, which I thought was great. . . I think Henry is making nice improvements socially!!"
I wrote back that we have seen some nice improvements at home also. Friday night Bill was blowing bubbles for the boys, and they were getting a little silly. Henry jumped on Bill, spilling the bubbles. Bill shouted "NO"- which usually would send Henry into a fit of screaming. I know it sounds silly- like he's just spoiled rotten, but Henry really gets upset if you tell him "no". It's like you have to find another way to get your negative answer across. And especially if you say it in an angry voice- forget about it. Anyway, Bill quickly explained why he had yelled. I was just happy that Henry didn't get upset.
Then, several minutes later and without any prompting, Henry went over to Bill and said "I'm sorry daddy. I'm sorry that I spilled the bubbles."!!!!!!
I also had a minor victory against the stim this weekend. At the library Henry wanted to borrow 2 copies of the Sleeping Beauty video. He has done this before and I frankly never thought much about it. But I am trying to be more conscious of the stims, and decided I would take a stand this time. (Besides the fact that some other child might want to check out the other copy.) I told him he could only get one of the Sleeping Beauty videos, and that they were both the same. "They are not both the same! The same is gone!" He immediately got the loud and panicked my-house-is-on-fire voice. And my resolve wavered. It was causing him such anxiety... But I stuck to my guns, if only so that the librarians wouldn't think that I am a huge pushover of a mom (or, I should say, so they wouldn't know that I am a huge pushover of a mom.)
But, you know what? He didn't have a meltdown. I didn't have to carry him screaming from the library. He was disappointed, but he went along (grumpily). When we checked out our books, I tried to explain his mood to that librarian by saying "we had a little argument downstairs when he wanted to check out 2 copies of Sleeping Beauty." Well, Henry caught hold of that statement, and when we were walking to the car, he said "we had an argument" in kind of a sad way. So I used that as an opportunity to say "yes, we did. But we still love each other, right?" "Having an argument" is a new concept for Henry, I think. Kind of a grown-up one.
Tonight I was the old pushover mom that he's used to. At the grocery store we bought donuts, ice cream, BBQ chips, and the Disney Princess Christmas DVD!
Tomorrow I am getting the kids' picture taken at the mall- wish me luck... I am kind of thinking that after the picture we can visit the Disney store. Do you think that's a good idea or bad?
"Henry scratched (another child) today, but when I brought it to his attention, he got up, walked over to (him) and said 'I'm sorry (kid's name).' He did this completely independently, which I thought was great. . . I think Henry is making nice improvements socially!!"
I wrote back that we have seen some nice improvements at home also. Friday night Bill was blowing bubbles for the boys, and they were getting a little silly. Henry jumped on Bill, spilling the bubbles. Bill shouted "NO"- which usually would send Henry into a fit of screaming. I know it sounds silly- like he's just spoiled rotten, but Henry really gets upset if you tell him "no". It's like you have to find another way to get your negative answer across. And especially if you say it in an angry voice- forget about it. Anyway, Bill quickly explained why he had yelled. I was just happy that Henry didn't get upset.
Then, several minutes later and without any prompting, Henry went over to Bill and said "I'm sorry daddy. I'm sorry that I spilled the bubbles."!!!!!!
I also had a minor victory against the stim this weekend. At the library Henry wanted to borrow 2 copies of the Sleeping Beauty video. He has done this before and I frankly never thought much about it. But I am trying to be more conscious of the stims, and decided I would take a stand this time. (Besides the fact that some other child might want to check out the other copy.) I told him he could only get one of the Sleeping Beauty videos, and that they were both the same. "They are not both the same! The same is gone!" He immediately got the loud and panicked my-house-is-on-fire voice. And my resolve wavered. It was causing him such anxiety... But I stuck to my guns, if only so that the librarians wouldn't think that I am a huge pushover of a mom (or, I should say, so they wouldn't know that I am a huge pushover of a mom.)
But, you know what? He didn't have a meltdown. I didn't have to carry him screaming from the library. He was disappointed, but he went along (grumpily). When we checked out our books, I tried to explain his mood to that librarian by saying "we had a little argument downstairs when he wanted to check out 2 copies of Sleeping Beauty." Well, Henry caught hold of that statement, and when we were walking to the car, he said "we had an argument" in kind of a sad way. So I used that as an opportunity to say "yes, we did. But we still love each other, right?" "Having an argument" is a new concept for Henry, I think. Kind of a grown-up one.
Tonight I was the old pushover mom that he's used to. At the grocery store we bought donuts, ice cream, BBQ chips, and the Disney Princess Christmas DVD!
Tomorrow I am getting the kids' picture taken at the mall- wish me luck... I am kind of thinking that after the picture we can visit the Disney store. Do you think that's a good idea or bad?
Tuesday, January 10, 2006
First, a few random thoughts prompted by Kristina's comment on my last post:
--Someone called the police on your husband? How horrifying! I guess that's another good reason to have the Autism Awareness ribbon on your car. Mine is on the refrigerator rather than the van- I need to get it out there so other moms won't stare at me at the playground.
--"Because our kids suffer and struggle and people don't rally round, like they do when you hear about a child with leukemia or some 'rare disease'"
It's really inappropriate for me to start comparing disabilities. But I do feel that ASD kids and their parents face an uphill struggle because Autism is still so misunderstood. When we were going through the long, painful process of having Henry diagnosed, I often thought if my child was blind, the doctors would know right away. We would all know right away. His disability would be easily identified, and everyone would know what to do next. There wouldn't be all this "is he or isn't he?" We would know what our options were.
The same analogy still holds some water for me- if my son was blind, yes, he would have a disability. But no one would assume he wasn't smart. People would know how to relate to him. And I would just tell people when they first asked about him. It would just be part of what he is. It would not diminish what he is.
And I would not be worrying about how to cure him, but rather how to help him make his way in the world.
I don't really know what my point is here. Certainly not that I wish my child was blind! Maybe just that I need to think of his autism in that way, and encourage others to think of it that way too. It means he can't do everything that other kids can, but he can live as just a fulfilled life as anyone else.
And, if my child was blind (or insert many other disabilities here), I probably wouldn't be hell-bent on making him play at the playground, would I? Learn a lesson here, mommy.
Ok, on to a different subject. Here is a picture of my beautiful boys sharing a double stroller at the zoo a couple weeks ago:
Henry makes that dumb face now, almost every time I take his picture. He's saying "CHEEESE".
In all my belly-aching about our weekend (no pun intended), I left out a sweet story. I felt sick to my stomach all day Saturday. Henry was being so nice and kept kind of petting my stomach and saying "you're making my tummy feel better." Then, on Sunday morning, he remembered that I had been feeling sick, and said "I feel better!" When I told him that, yes, I did feel better, he said "you made me feel better. You took me to (pause pause) you were a doctor and helped me feel better!" Can you believe he came up with that himself?? (Pronouns all backwards as usual, but still...)
--Someone called the police on your husband? How horrifying! I guess that's another good reason to have the Autism Awareness ribbon on your car. Mine is on the refrigerator rather than the van- I need to get it out there so other moms won't stare at me at the playground.
--"Because our kids suffer and struggle and people don't rally round, like they do when you hear about a child with leukemia or some 'rare disease'"
It's really inappropriate for me to start comparing disabilities. But I do feel that ASD kids and their parents face an uphill struggle because Autism is still so misunderstood. When we were going through the long, painful process of having Henry diagnosed, I often thought if my child was blind, the doctors would know right away. We would all know right away. His disability would be easily identified, and everyone would know what to do next. There wouldn't be all this "is he or isn't he?" We would know what our options were.
The same analogy still holds some water for me- if my son was blind, yes, he would have a disability. But no one would assume he wasn't smart. People would know how to relate to him. And I would just tell people when they first asked about him. It would just be part of what he is. It would not diminish what he is.
And I would not be worrying about how to cure him, but rather how to help him make his way in the world.
I don't really know what my point is here. Certainly not that I wish my child was blind! Maybe just that I need to think of his autism in that way, and encourage others to think of it that way too. It means he can't do everything that other kids can, but he can live as just a fulfilled life as anyone else.
And, if my child was blind (or insert many other disabilities here), I probably wouldn't be hell-bent on making him play at the playground, would I? Learn a lesson here, mommy.
Ok, on to a different subject. Here is a picture of my beautiful boys sharing a double stroller at the zoo a couple weeks ago:
Henry makes that dumb face now, almost every time I take his picture. He's saying "CHEEESE".In all my belly-aching about our weekend (no pun intended), I left out a sweet story. I felt sick to my stomach all day Saturday. Henry was being so nice and kept kind of petting my stomach and saying "you're making my tummy feel better." Then, on Sunday morning, he remembered that I had been feeling sick, and said "I feel better!" When I told him that, yes, I did feel better, he said "you made me feel better. You took me to (pause pause) you were a doctor and helped me feel better!" Can you believe he came up with that himself?? (Pronouns all backwards as usual, but still...)
Monday, January 09, 2006
I think I set myself up for a letdown. I've been feeling really good about everything lately: the holidays went very well, and reflecting back on the past year made me realize how far Henry had come in 2005. Last week I sent e-mails to some of his former teachers and therapists, gushing about all the things Henry does (and doesn't do) now, thanking them for all their help in the past. I posted on Oliver's mom's site how I'm moving along on the road paved with acceptance.
This has happened before. I get in my little "autism bubble" where everything is wonderful. Henry's teachers think he's doing great, my friends and family are all cheering him on, I'm thinking that the sky's the limit...
And then I notice the real life of "normal" 6-year-olds. And I'm like, "oh yeah, autism sucks." Let me say up front that I realize I'm being very negative here. This is one of those venting posts...
Sunday morning Bill, Kate and Tommy all went to church. (I will post about the church issue another time.) Henry wanted to watch a movie, and I tried to get a few things done around the house. He kept requesting that I sit with him, which was sweet. But every time I snuggled up next to him on the couch, he would say "I want to go to the Grandview library. I want to go to the Grandview library. I want to go to the Grandview library. I want to go to the Grandview library. I want to go to the Grandview library." (Grandview is another suburb, just on the other side of downtown Columbus. It's where the eye doctor is, where L's house is, close to work, and we used to live there, when Henry was born. They have a very nice library.) We had already been to our local library the night before. But I told Henry we might be able to go later that afternoon, when we took Kate somewhere.
Here's where the autism sucks thing begins. 5 minutes later he asks me to sit with him, and then begins again "I want to go to the Grandview library..." you get the idea. I believe most typical 6-year-olds will register that they can do something LATER, and maybe stop talking about it for the 5 hours in-between. I don't know, maybe not.
We did finally go to the other library. I know that, in theory, a child wanting to go to the library is a good thing. But what if said child is autistic, and simply wants to perseverate on a few favorite obsessions at the library? He checked out 5 Power Rangers DVDs. He will most likely not watch them, but will just arrange them on the floor and look at them. Then he checked out 2 Nintendo magazines and 3 Disney magazines. He will look through them and comment on TV shows, movies, characters that he recognizes. (I usually also check out a couple books and read them to Henry while he eats or before a preferred book at bedtime. I do try to get in some non-Disney material.)
A Brownie troop was meeting at the library, and while Henry was looking through the magazines I was watching some of the girls. At first I was remembering when Kate was that age, and in Brownies, and I was feeling a little sentimental. Then I started wondering if I knew any of these girls from our time living in Grandview. Then, with a start, I realized that these girls were Henry's age. For some reason, that kind of sent me reeling. Again, the autism bubble thing. I know that Henry is doing great, by Henry standards. But then I look at these little social girls, being silly and reading to each other from library books, and I think that I can never imagine Henry interacting with other kids his age like that. And it makes me sad.
When the library closed, we stopped at a playground nearby. As we drove up, Henry started screaming "you don't want to go to this playground!" It's hard to describe the anxiety in his voice here- maybe the way your voice would sound if you were screaming "somebody help me my house is on fire!" He brought his magazines with him, the whole time shouting that he doesn't want to play on the playground, he wants to sit at this table and look at these magazines!
So I run out on the playground, trying to get him to follow me. He does, reluctantly. Goes down one double slide with me and then heads back to the picnic table. I try to grab him and carry him over to the swings, him protesting the whole time. This is when I noticed a mom and her toddler daughter, pushing a doll in a stroller. They are stopped, looking at us. I realized with another sinking feeling that the mom probably thought I was abusing my child in some way, or kidnapping him. What the hell?
In any other world but Autismland, a mom can take her son to the playground without him acting like he's being tortured. And, I know not to compare, but... I brought Tommy here a couple months ago and we had a ball.
We got back in the van after exactly 7 minutes at the playground, and drove to Target. How long have I been Henry's mom??!! Why do I forget that he has certain things that he wants to look at in Target, and none of them are in the cleaning supplies aisle, or the bedding aisle, where I needed to go.
Imagine all of these said with the house-on-fire voice, and repeated 10 times in a row:
"I want to look at the Power Ranger shirts!"
"I want to look at the coloring books!"
"You want to look at these things!"
"You want this Spiderman puzzle!"
"You want TWO things!"
Yes, his language has come far. A year or two ago he would just have been wailing and pointing (with his whole hand, not with a finger). But sometimes I feel like we are still doing the same old stuff, fighting the same old battles. He has more words to use, but I don't always feel like he is hearing and understanding my words.
It wasn't a bad weekend. In fact, Henry probably thought it was a great weekend. He got to go to two libraries and got a puzzle and a sticker book at Target.
But I ended up feeling sad.
Wednesday, January 04, 2006
postscript to #5
Yesterday Henry's teacher wrote:
"What a great day for Henry! He was wonderful, playing 'follow the leader' with (2 other boys in his class).
We are also going to work on reading now, though Henry actually seems to read better than most kindergartners!"
BIG SMILE!
"What a great day for Henry! He was wonderful, playing 'follow the leader' with (2 other boys in his class).
We are also going to work on reading now, though Henry actually seems to read better than most kindergartners!"
BIG SMILE!
Tuesday, January 03, 2006
10 things about Henry
(This picture is almost a year old, but I like it. At the time, it was really something just to capture these two interacting at all. It is getting better now.)
Hmmmm. This will be a bit of a challenge, as I don't want to repeat things that you already know, like "Henry likes puzzles".
1. His middle name is Davies, which is also his father's middle name, his grandfather's middle name, and was his great-grandfather's middle name.
We mostly just picked the name Henry because we liked it, although my grandmother did have a brother named Henry.
2. Henry never really had a nickname until Thomas started calling him "bubba". That has kind of stuck with us now.
3. Henry loves to eat fruit. He hates to eat vegetables. He will eat a pound of grapes but will gag if you force him to eat one cube of carrot from the mixed vegetables.
He also likes to eat sausage links, pasta with tomato sauce, cereal with milk (but with his fingers- not with a spoon. Ugh.) He will not drink milk.
4. When he was small Henry used to like to watch the weather radar on tv.
5. Henry has always loved books. He has always loved to be read to and I just can hardly wait until he can read. I feel that day approaching and I know it will open a whole new world for him.
6. He has never had a successful haircut by a professional person. I (who have no skill whatsoever) have always cut his hair in the bathtub. Luckily he has those messy waves which hide my mistakes.
7. Henry likes to "help" me bake. He gets a chair to stand on and likes to talk about the recipe. Sometimes he'll stir a little.
8. Some of you have also said this about your children- Henry has a way of charming people and making them fall in love with him. It's very interesting that these autistic kids, who can be socially inept and unaware of others' feelings, have their own charm that is so irresistible.
9. At the zoo last week, Henry decided his new favorite animals are the reptiles. (Before that it was the "sea creatures".) We visited the reptile house once and then once more before we left. We stayed for the longest time, watching those snakes that don't really do much. I'm curious about why he found them so intriguing.
I had been wanting to set up an aquarium, but now I'm wondering if we should get a lizard or something. Are there some types that eat "lizard food"? Because I definitely don't want to have to keep crickets or mice in the house...
10. At age 9 mos., Henry tested allergic to cats and milk. When we had him tested again last spring, he tested allergic to NOTHING. And let me tell you, the testing process (holding him down to have his back pricked over and over) was not pleasant. I guess the resulting information was worth it.
Saturday, December 31, 2005
(#25) The Henry Chronicles, Volume 4
Some of you seem to be reviewing 2005, so I thought it was a good time to write my final Henry Chronicles installment, since I left off about this time last year, when Henry was really struggling at preschool/daycare. We found another spot for him, in a small, special-needs preschool class that just met in the afternoons. My friend, L, agreed to take him in the mornings and the school transportation service would transport him to the class and back home. We were all (teachers, administrators and parents) really hopeful that this small class with experienced teachers would make a big difference for Henry.
It didn't. He had the few-week honeymoon period where everything was great and the teachers acted like they wondered what all the fuss was about. Then he started pinching, scratching, screaming, kicking, knocking over chairs, etc, all over again. His teacher kept calling me at home, asking me if I had any suggestions for her. I was like "if I knew how to make him stop acting this way, I would have told the teachers at his old school. You're the one trained in special education." Of course, that's just what I was thinking. I didn't say it, I just kept trying to think of suggestions for them.
Around the same time he switched schools (February), we finally got our PDD diagnosis. The psychiatrist basically asked me if I wanted him to give the diagnosis or not! Like I would want my son to continue struggling in regular classrooms, being treated like the "bad" kid? Why did he approach it that way? I guess some parents don't want their child labeled. But by that point I was welcoming a label, if it would help Henry's teachers and everyone else know how to relate to him. We initially discussed placing Henry in the regular kindergarten class at our neighborhood school, with an aide. But the more trouble he was having as the preschool year wound to a close, the school district started balking at that idea.
He spent the summer at the Easter Seals program, which went pretty well, but he was still showing a lot of aggressive behavior, and refusing to cooperate with a lot of classroom activities.
We ended up getting a spot in a STACK (structured teaching for autistic and communication-delayed kids) classroom in another school district about a 20-minute drive away. I was slightly disappointed that Henry wouldn't be attending the neighborhood school, but this arrangement is actually much better because it's a full-day program. In our school district he would have attended a half-day kindergarten class and then been in the Y program the rest of the day. That would surely have been an over-stimulating disaster.
I started off the school year trying to give lots of suggestions, as that's what all his other teachers had seemed to want. The others had all found Henry to be a completely unpredictable mystery. Very quickly I realized that these STACK teachers didn't need my suggestions. They were totally on top of everything. At the first IEP meeting this fall, they told me they had Henry all figured out. Wow. What a great feeling.
That doesn't mean he doesn't have "rough" days anymore. But they are more isolated incidents, rather than constant behavior problems. His language has vastly improved- he's using "I" appropriately about half the time now, I'd say. He will greet people and answer a few questions without prompting. He just gets up and goes to the bathroom now when he needs to. (A year ago we had to constantly check on him and ask if he needed to go.) He is cordial to his brother about half the time now. And when he is frustrated, he is using words rather than screaming or pinching, etc.
And that picture at the top-- that's Henry playing with some toys he picked out at Target. He was making the dragons fly. I overheard him saying "hi little dragon" which, as far as I know, isn't a script.
We change our expectations. At the basketball game Thursday night, 2 older boys ran over to say "hi" to Henry as soon as we walked in. He said "hi" dutifully, then didn't give them another glance all night. He's far from a typical kid. But he enjoyed watching the game and we stayed to the end- I consider that a great night, in Autismland. (Kristina, you need to trademark that word!)
I'm resistant to draw conclusions. Is Henry's school placement making all the difference? Is he just older and so physically, emotionally, mentally ready to make some strides? Was the bad preschool experience in the spring inevitable after a REALLY bad situation, and they just "broke him in" for the current class? I guess time may tell.
Our journey with Henry so far has surely had some low points- some times when I felt really in the dark and didn't have any idea what to do next. But we have been so blessed with friends and educators all along the way who have given good advice and, if they weren't sure what advice to give, they gave us moral support and gave Henry unconditional love. I wish, wish, wish, I had known some of you 4 years ago- you could have held my hand and shed a little light on the confusion. Maybe I would have shed a few fewer tears.
Well, enough with the "what ifs". Here's to 2006!
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