First of all, I want to reach out to all of you with kids or someone else you love similar to Janey. I hope you are all hanging in there, and I very much hope that none of you have caught the awful virus.
How are things here? Well, mostly okay. Better than I thought they would be a few weeks ago. Janey had a terrible time adjusting to school being closed. For a few weeks, she cried almost all day every day, screamed a great deal, bit her arm, just was not happy at all. And then, fairly suddenly, she seemed to get used to the new normal. It was so wonderful to see her smiling again, and dancing around, and seeming to enjoy life.
The new normal does have some hard parts. One is sleep. Janey's teacher has told me a lot of kids in her class are having trouble with sleep. Janey seems to have chosen a random sleep schedule. She'll be up a lot of the night, sleep a lot of the day, then sleep a night and be up a day, and then have a day with long naps and a night with long anti-naps, awake periods. It's tiring for all of us. But often now at night, she'll watch videos or YouTube and require little help from us, so we can catnap much more than we ever used to be able to.
Janey also, like a lot of us, wants to do things she can't do. We are being very, very, very careful about social distancing. Tony and I know that catching the virus could be extremely serious for either of us, with his quite severe diabetes and my collection of issues. We want to avoid it at all costs. So we haven't been to any stores, we haven't gone to drive-thrus, we leave the house only for car rides to no-where. Janey enjoys these rides, but often asks to go to the grocery store or get McDonalds, things she loves doing especially with Tony. She is accepting no as an answer more than we would have thought, but she isn't happy about the nos.
We are doing some Zoom sessions with Janey's teacher and will start doing some with her therapists, too. Janey isn't too bad with the Zoom learning. She does about 15 minutes worth without asking to stop, thanks to her teacher's creative ideas. Mostly, though, Janey's kind of school activities just don't translate to homeschooling. And we are okay with that. I think often how hard it would be if Janey were in a college prep type situation. We can let this be a time of vocational learning. Janey is helping me with the laundry, helping me vacuum, helping Tony cook, things like that.
My own stress has increased while Janey's has decreased, however. I'm an introvert who can happily go weeks without leaving the house much, so that part is okay, but it's the everyday things in life that are getting harder and harder that keep me up nights. At first, we were able to order groceries online for delivery. Now, it's impossible to get a delivery slot, even if I stay up until midnight and try to get a time as a new day opens up. At some point, we will have to shop. That is going to be scary. Boston is one of the most affected areas in the US, and our particular neighborhood is one of the most affected in the city.
Today, it was very windy, and a tree landed on the wires that provide us with our landlines, cable and internet. We are lucky that we have a backup internet, much slower but still use-able. But somehow losing the landlines and cable scared me. I tried, as did the neighbors, to call Verizon over and over, and it's impossible to get a live person, and for their own reasons, you can't report a down line on-line. You have to talk to someone live. I have no idea when they will be able to fix the wires. I keep telling myself we are fine without them, but somehow this storm and wind and outages seemed like the straw that broke the camel's back for me in terms of stress. Which I keep telling myself is very silly and selfish, as we are not sick and so many people have it so much harder. I think, though, that we live with a base level of stress that never quite goes away, and when even a small amount gets added on, it's hard.
If I get even more self-analytical, I think I'm terrified by how quickly it feels like it all can fall apart---schools closed, hospitals overwhelmed, food shortages, the economy tanking, the ever-present feel of sickness. And throughout history, when things fall apart, it's the most vulnerable among us, people like Janey, that often suffer. Like many others, I read about how ventilators might be rationed, and how one of the criteria items to be considered was "mental retardation" That gave me some nightmares. But even on a less dire level, when budgets get tight, special education often seems to be cut first. More than most, Janey needs a society that cares about all, that provides for all, that sees all lives as valuable.
Someday, this time will be over. I keep thinking of that WWII song "They'll Be Bluebirds Over The White Cliffs of Dover, Tomorrow,Just You Wait and See" They'll be school again, grocery stores you can shop at without fear again, news other than the scary lists of new cases and lives lost. We'll get through this. I am thinking of all of you, and sending you love, and I will close with what so many calls and letters close with lately---be well.
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Showing posts with label McDonalds. Show all posts
Showing posts with label McDonalds. Show all posts
Monday, April 13, 2020
Tuesday, November 14, 2017
Sneakers with a skirt
This morning, I put Janey in a skirt. As I put on her sneakers with the skirt, I had one of those crystal clear flashbacks. I was in 7th grade, like Janey, and I had worn a dress to school. With it, I wore sneakers, Keds kind of sneakers that were floral. At recess, a bunch of girls snickered, and one said to me in the classic "I'll going to tell you the truth even if it hurts" type way, "You really aren't supposed to wear sneakers with a dress or skirt. I think they look fine, but other people think it looks really dumb" I hadn't thought of that for many years. It wasn't any huge deal---it was the 7th grade type of girl stuff, which I am sure I dished out as well as took---but it stopped me short for a minute as I recalled it.
In many ways, Janey's world and the one I lived at her age don't have many interacting points. She doesn't live a life which is in any way at all like most 13 year olds in 7th grade. That makes me sad, often, but I don't think it makes her sad. The last year or so, most of the time she's seemed pretty happy with her life. We've fallen into a routine that works for her. She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep. That's her days. On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.
In many ways, Janey's world and the one I lived at her age don't have many interacting points. She doesn't live a life which is in any way at all like most 13 year olds in 7th grade. That makes me sad, often, but I don't think it makes her sad. The last year or so, most of the time she's seemed pretty happy with her life. We've fallen into a routine that works for her. She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep. That's her days. On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.
Janey doesn't know you aren't supposed to wear sneakers with a dress. I guess I didn't either, but she's not going to be schooled in it. She doesn't care. She's not going to have many of the small moments of hurt and sadness that the teenage years bring. She's not going to hear the news and fear from it, not going to have the arching pain of a first crush, not going to have papers or reports or projects due on a deadline, not going to worry about test grades, not going to suffer the lingering sadness of broken friendships. There is much she's not going to feel, and I have to say---that's not all bad. When I say I wish she could feel those things, there is part of me that is glad she won't. Life, typical life, everyday life, has a lot of pain.
Is it okay that I sometimes rejoice in Janey exactly how she is, that I rejoice in the parts of her that are deeply connected with the autism? Am I supposed to only feel happy when she is able to simulate normal? Can I feel happy that she jumps up and down and screams with joy that we say yes to McDonalds? Can I get teary-eyed at her beauty as she wears the clothes I picked for her, clothes that might not be the style for her age, clothes that are a mother's vision of how I want her to look? Can I be glad she will always love Tony and me with an innocence that is non-critical, that never tackles the complicated tensions that arise as a child's relationship with parents changes as the child becomes an adult? Can I look at her, waiting eagerly for the bus, in her skirt and sneakers, with her hair done inexpertly by me, and feel joy in exactly who she is?
I hope I can.
Monday, July 10, 2017
Full Circle McDonalds Trip
This weekend, we spent a lot of time organizing our bedroom, to prepare for a badly needed new mattress. Some of the work involved heavy lifting and cleaning, so we decided I would get Janey out of the house so Tony could do the work without Janey needing Daddy's attention 100% as she usually does on weekends. I took her various places, one of which was a McDonalds. During the meal there, I kept flashing back to another trip to that same McDonalds.
Here's a blog entry about that long ago trip, when Janey was four. (LINK) It's a trip that has stayed in my mind for all those years because it seemed like a dividing line. Before that trip, I often took Janey out and about. I ever said in the entry "Usually she loves to shop", which surprises me a bit now to read, but I vaguely remember as true. Janey did, when she was very little, like to go shopping and to be out and about. We often went to McDonalds and ate inside. But that day, she had a violent reaction to something, and for one of the first times, tried to bite me, and succeeded in biting her own lip and the back of the chair.
After that trip, I didn't take Janey out much on my own ever again. It wasn't safe. We did a trip here and there, but overall, I just didn't.
Now, eight and a half years later, I do again. Finally again I feel safe taking her places. I have enough confidence in her ability to stay calm and my own ability to calm her if she doesn't stay calm that we are going places, fast food places and short trips to stores and yesterday, swimming at a Y for summer autism free swim. The trip back to the McDonalds was smooth (besides them giving me a burger instead of grilled chicken in my sandwich and me just eating it rather than trying Janey's patience by returning it).
However, the trip also highlighted to me another change. Janey is not talking much lately. Her calmer behavior seemed pared with less activity overall. During the meal, she said exactly one thing, an echoed "23" when I commented that the number of the marker we had on our table was 23. She ate in silence, despite my best trials.
When I read back about the long ago trip, it is hard in some ways to read what she said long ago after the trip----"I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound" All these years later, a sentence like that is basically unheard of. It's quite hard often to realize that despite many, many years of speech therapy, ABA and schooling and just getting older, Janey talks substantially both less and less complexly than she did soon after her diagnosis, even during periods of more talking than we are in right now.
I don't think the two are connected. I don't think talking less and being calmer go together by necessity. At least, that's not supposed to be the plan. It's supposed to be that talking, communication, can make Janey calmer---that if she can tell us what is bothering her, we can help. But back then, she told me that long sentence that I thought was about what was making her upset, and it didn't help a bit.
I don't get to decide, of course, but what if I could? What if I could pick a calmer but less active and communicative Janey or a more communicative but less calm Janey? Which would be better for her? I have no idea.
Another thought that has crossed my mind---maybe Janey talks less now because we have learned more about her. Maybe she doesn't talk when she doesn't feel she has to. She isn't into talking just to chatter---she talks when she has something to say, and maybe by understanding more of what she needs, she doesn't need to tell us. Is that good or bad? Again, I really don't know.
Whatever the reasons, the reflection on the two widely separated trips to McDonalds has left me with more questions than answers.
Here's a blog entry about that long ago trip, when Janey was four. (LINK) It's a trip that has stayed in my mind for all those years because it seemed like a dividing line. Before that trip, I often took Janey out and about. I ever said in the entry "Usually she loves to shop", which surprises me a bit now to read, but I vaguely remember as true. Janey did, when she was very little, like to go shopping and to be out and about. We often went to McDonalds and ate inside. But that day, she had a violent reaction to something, and for one of the first times, tried to bite me, and succeeded in biting her own lip and the back of the chair.
After that trip, I didn't take Janey out much on my own ever again. It wasn't safe. We did a trip here and there, but overall, I just didn't.
Now, eight and a half years later, I do again. Finally again I feel safe taking her places. I have enough confidence in her ability to stay calm and my own ability to calm her if she doesn't stay calm that we are going places, fast food places and short trips to stores and yesterday, swimming at a Y for summer autism free swim. The trip back to the McDonalds was smooth (besides them giving me a burger instead of grilled chicken in my sandwich and me just eating it rather than trying Janey's patience by returning it).
However, the trip also highlighted to me another change. Janey is not talking much lately. Her calmer behavior seemed pared with less activity overall. During the meal, she said exactly one thing, an echoed "23" when I commented that the number of the marker we had on our table was 23. She ate in silence, despite my best trials.When I read back about the long ago trip, it is hard in some ways to read what she said long ago after the trip----"I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound" All these years later, a sentence like that is basically unheard of. It's quite hard often to realize that despite many, many years of speech therapy, ABA and schooling and just getting older, Janey talks substantially both less and less complexly than she did soon after her diagnosis, even during periods of more talking than we are in right now.
I don't think the two are connected. I don't think talking less and being calmer go together by necessity. At least, that's not supposed to be the plan. It's supposed to be that talking, communication, can make Janey calmer---that if she can tell us what is bothering her, we can help. But back then, she told me that long sentence that I thought was about what was making her upset, and it didn't help a bit.
I don't get to decide, of course, but what if I could? What if I could pick a calmer but less active and communicative Janey or a more communicative but less calm Janey? Which would be better for her? I have no idea.
Another thought that has crossed my mind---maybe Janey talks less now because we have learned more about her. Maybe she doesn't talk when she doesn't feel she has to. She isn't into talking just to chatter---she talks when she has something to say, and maybe by understanding more of what she needs, she doesn't need to tell us. Is that good or bad? Again, I really don't know.
Whatever the reasons, the reflection on the two widely separated trips to McDonalds has left me with more questions than answers.
Labels:
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autism,
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speech therapy,
talking
Tuesday, May 16, 2017
Better Than Typical
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| Trying on a cape! |
Last Friday after Janey got home from school, we drove out to get her brother Freddy in upstate New York, at Skidmore College where he was finished with his sophomore year. It's a trip Tony could and has done alone, but I really felt like I needed a change of scenery, so we reserved a hotel room for Friday night.
Janey was completely happy during the whole five hour drive out (it would be three hours without any stops, but we don't roll that way). We played music the whole time, and she rocked out to a huge variety of tunes. I love how open she is to music, to songs she hasn't heard before and songs she's heard a million times. If it has a good beat and is interesting, she likes it, and lets us know (as she does if she doesn't like it!). She isn't influenced by what's cool, or not cool, or what we want her to like---she likes what she likes (which was proven by the fact one of the songs she got really into on the drive was sung by Justin Beiber, and our feelings about the song didn't matter to her!) We all discovered we loved a song by The Lemonheads, Janey let us know she's not into Madonna, we all liked the various Nicktoons songs my Slacker Radio app picked, we had a blast.
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| In awe of Freddy's dorm |
When we got to Skidmore, Janey was just about overcome with excitement. We don't go a lot of places at night, being very early to bed people, and getting out in the parking lot of Freddy's dorm, seeing his dorm tower and the streetlights, taking an elevator up to his room, trying on a cape that was in a box of give-away castoffs in the dorm hall----it was like we had set her up with the ultimate night of fun and thrills. I kept thinking about how I would have felt about such a trip at her age, or how the boys might have felt. It's fair to say I wouldn't have been quite so excited over a long drive with my parents to pick someone up---one with no real recreation or treats involved.
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| The thrilling elevator ride! |
It's funny---it somehow sometimes seems wrong to delight in the GOOD that having a child like Janey brings, and it shouldn't be. There is much that is good about having a 12 year old that still adores us, that can get excited without self-consciousness about little things like an elevator ride or a Happy Meal, having a child that wants little more in life than family, music and fun. When Janey is happy, we are all happy, and I am going to try to stop thinking of that with an asterick, thinking "Yes, she's happy, but although being a typical preteen might be tougher, she is missing so much..." Well, we all are missing something. What she is missing might be different, but what makes her happy is different too, and we can delight in her happiness without thinking of it as a "despite of" thing. We are so lucky to have you as a daughter, Janey.
Tuesday, February 3, 2015
The snowiest week in Boston history---some notes
The past seven days have broken the Boston record for snowfall amounts, by 10 inches. Needless to say, there hasn't been much school---one day out of the last 5. Janey is home again today.
How is it going? Well, not as badly as it might be. Not great, but not terrible. As an old friend said on Facebook, Janey's in a routine now---a no school routine. She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride. It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible. So she's home.
What have we been doing? Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing. It pains me to write that, but it's true. When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge. For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.
We've been doing a good deal of reading, too. I love this. I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them. She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored. We read through a long treasury twice last night, and Janey knows every rhyme by heart.
Tony has been home a lot of the time, and he's done a lot of cooking for Janey. This is one of her biggest joys. He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants. She loves the whole process.
Of course, there has been some hitting, kicking, biting and so on. We are still struggling hard to figure out just how to handle this. For a while, we were having success with time out in the bathroom. However, Janey has started to like this time out. The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately). I was trying to get her to sleep, and said no. So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!" I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.
More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge. Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV. We were all bored of it, but too lethargic to turn it off. Janey went over and turned off the TV. This almost always gets a quick response from us, but none of us said a word, because none of us cared. Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!" We had not followed the routine. But how do we use this knowledge? Most of the time, her turning off the TV is NOT something acceptable. We have to let her know that's the case. But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior? Who knows? What can we do?
Hopefully, there will be school tomorrow. And that will be an adjustment for Janey once again. I can't imagine what life feels like for her much of the time. She doesn't understand so much of it. Sometimes there's school. Sometimes there isn't. Sometimes we can walk to get ice cream or go get a Happy Meal. Sometimes we can't. Sometimes turning off the TV is very naughty. Sometimes no-one seems to care. Sometimes everyone is awake and ready to cook, to read, to talk. Sometimes it's dark and nobody wants to do anything. That is life, but it's very hard for Janey to understand. When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.
How is it going? Well, not as badly as it might be. Not great, but not terrible. As an old friend said on Facebook, Janey's in a routine now---a no school routine. She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride. It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible. So she's home.
What have we been doing? Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing. It pains me to write that, but it's true. When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge. For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.
We've been doing a good deal of reading, too. I love this. I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them. She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored. We read through a long treasury twice last night, and Janey knows every rhyme by heart.
Tony has been home a lot of the time, and he's done a lot of cooking for Janey. This is one of her biggest joys. He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants. She loves the whole process.
Of course, there has been some hitting, kicking, biting and so on. We are still struggling hard to figure out just how to handle this. For a while, we were having success with time out in the bathroom. However, Janey has started to like this time out. The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately). I was trying to get her to sleep, and said no. So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!" I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.
More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge. Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV. We were all bored of it, but too lethargic to turn it off. Janey went over and turned off the TV. This almost always gets a quick response from us, but none of us said a word, because none of us cared. Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!" We had not followed the routine. But how do we use this knowledge? Most of the time, her turning off the TV is NOT something acceptable. We have to let her know that's the case. But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior? Who knows? What can we do?
Hopefully, there will be school tomorrow. And that will be an adjustment for Janey once again. I can't imagine what life feels like for her much of the time. She doesn't understand so much of it. Sometimes there's school. Sometimes there isn't. Sometimes we can walk to get ice cream or go get a Happy Meal. Sometimes we can't. Sometimes turning off the TV is very naughty. Sometimes no-one seems to care. Sometimes everyone is awake and ready to cook, to read, to talk. Sometimes it's dark and nobody wants to do anything. That is life, but it's very hard for Janey to understand. When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.
Monday, September 29, 2014
Randomly selected moments with Janey
Of course I probably can't really be random with my selections, but I thought I'd write about some everyday moments in life with Janey, just to try to capture who she is right now.
1. We are all taking a ride to get Freddy things he needs for school. There's a black car coming out of the parking lot near the police station. We are trying to figure out if it's a police car or a limo. Janey pipes in "It is a police car!" We are all surprised and pleased, as it's quite rare for her to join in a conversation like that.
2. Janey wakes me up in the middle of the night. She lies down next to me, and I try to go back to sleep. She says "You want to take a shower?" I say no, not right now. She asks a few more times, with the same answer. Then she says "You want to see the shower curtain?" I put up a new curtain, the day before, with owls on it. Pleased that she noticed, I do get up so we can go see it. She immediately takes over the whole bed. I've been fooled again by her sneaky nighttime tricks. I go to sleep in her bed, until she decided to switch beds again.
3. Janey is watching "The Little Mermaid". She's been asking for it all weekend, and we've been telling her she can't watch it because she pulled out the tape. Finally, Tony decides to try to fix it, and is successful. She is thrilled to see it, until the scene where Ariel's father yells at her. When that comes on, Janey smashes against the TV with her fist, a recent behavior that she knows will result in the TV being unplugged. I am watching her as she does it, and I can see in her face she realizes her mistake a second after punching, and she screams in frustration. The TV is unplugged anyway.
4. I wake up Saturday morning after having a nice night's sleep. Janey has been up a while already, having her favorite type of weekend breakfast with Daddy, various greens with olive oil and hot sauce. When she sees me, she dashes over and gives me a big hug and smile.
5. We are coming back in the car from being out visiting William. It's later than Janey usually stays up, about 9 pm. She has been fairly cheerful, but suddenly and without warning, she lunges at Freddy, who is sitting next to her in the back seat. She tries to pull his hair. He grabs her hands to keep her from doing so, and she bites at them. Freddy manages to keep her from hurting him much, but it's a struggle for the 10 minutes until we get home, completely with her screaming. We offer to stop, to have me sit in back with her, but Freddy declines. He's gotten used to such scenes over the years. I cry in the front seat.
6. I put on "Olivia", which we have in streaming video from our Amazon account. Janey hasn't seen it for years, but she is instantly taken with it. She watches the whole episode, and then deftly navigates the user-unfriendly interface to put on the next episode. Over the weekend, she watches eight episodes---eight different ones, not the same one obsessively eight times.
7. I am dressing Janey for school. She is tired and annoyed, and kicks me in the stomach. I am too tired, bone tired, to get upset. I just say "You can't do that. We have to get dressed". She becomes instantly cooperative. She keeps looking at me with a worried look, as if she expects to hear more about the kick. When I am done dressing her, she kisses me, which she almost never does.
8. Another morning getting ready for school. Janey is in another bad mood. We managed to get dressed, but she is crying and screaming. She goes over and gets the hairbrush and hands it to me, while saying "Don't brush your own hair! Don't brush your own hair!", which is what she says when she's upset I'm brushing. I brush quickly, to get it over with, without counting out twenty brushes, as I usually do. When I stop, Janey screams and hands me back the brush, yelling "Thirteen! Fourteen!" That is right where I left off in my silent counting. I brush up to twenty, as she screams.
9. Another middle of the night. Janey wakes me up and saying "Chinese rice!" I tell her we don't get takeout in the night. She considers that a moment, and then says "Pizza!" I repeat myself. She is undaunted..."Happy Meal! Chicken nuggets! Fries! Chocolate Milk! Toy!"
10. Janey gets off the bus and her Auntie Rose is just arriving at our house. She hugs her aunt, thrilled to see her. Auntie Rose goes upstairs to help my brother-in-law in his apartment. Janey has her snack downstairs with me, and then says "Go see Nana and Grandpa!" I tell her they are far away right now, although I suspect what she really means. She thinks a minute and says "Go see Auntie Carrie!" I tell her Auntie Carrie is even further away, in Colorado. I ask her "Do you mean Auntie Rose?" and she smiles a huge smile and says "GO SEE AUNTIE ROSE!" So we do.
Everyday life with Janey is hundreds and thousands of moments like these.
1. We are all taking a ride to get Freddy things he needs for school. There's a black car coming out of the parking lot near the police station. We are trying to figure out if it's a police car or a limo. Janey pipes in "It is a police car!" We are all surprised and pleased, as it's quite rare for her to join in a conversation like that.
2. Janey wakes me up in the middle of the night. She lies down next to me, and I try to go back to sleep. She says "You want to take a shower?" I say no, not right now. She asks a few more times, with the same answer. Then she says "You want to see the shower curtain?" I put up a new curtain, the day before, with owls on it. Pleased that she noticed, I do get up so we can go see it. She immediately takes over the whole bed. I've been fooled again by her sneaky nighttime tricks. I go to sleep in her bed, until she decided to switch beds again.
3. Janey is watching "The Little Mermaid". She's been asking for it all weekend, and we've been telling her she can't watch it because she pulled out the tape. Finally, Tony decides to try to fix it, and is successful. She is thrilled to see it, until the scene where Ariel's father yells at her. When that comes on, Janey smashes against the TV with her fist, a recent behavior that she knows will result in the TV being unplugged. I am watching her as she does it, and I can see in her face she realizes her mistake a second after punching, and she screams in frustration. The TV is unplugged anyway.
4. I wake up Saturday morning after having a nice night's sleep. Janey has been up a while already, having her favorite type of weekend breakfast with Daddy, various greens with olive oil and hot sauce. When she sees me, she dashes over and gives me a big hug and smile.
5. We are coming back in the car from being out visiting William. It's later than Janey usually stays up, about 9 pm. She has been fairly cheerful, but suddenly and without warning, she lunges at Freddy, who is sitting next to her in the back seat. She tries to pull his hair. He grabs her hands to keep her from doing so, and she bites at them. Freddy manages to keep her from hurting him much, but it's a struggle for the 10 minutes until we get home, completely with her screaming. We offer to stop, to have me sit in back with her, but Freddy declines. He's gotten used to such scenes over the years. I cry in the front seat.
6. I put on "Olivia", which we have in streaming video from our Amazon account. Janey hasn't seen it for years, but she is instantly taken with it. She watches the whole episode, and then deftly navigates the user-unfriendly interface to put on the next episode. Over the weekend, she watches eight episodes---eight different ones, not the same one obsessively eight times.
7. I am dressing Janey for school. She is tired and annoyed, and kicks me in the stomach. I am too tired, bone tired, to get upset. I just say "You can't do that. We have to get dressed". She becomes instantly cooperative. She keeps looking at me with a worried look, as if she expects to hear more about the kick. When I am done dressing her, she kisses me, which she almost never does.
8. Another morning getting ready for school. Janey is in another bad mood. We managed to get dressed, but she is crying and screaming. She goes over and gets the hairbrush and hands it to me, while saying "Don't brush your own hair! Don't brush your own hair!", which is what she says when she's upset I'm brushing. I brush quickly, to get it over with, without counting out twenty brushes, as I usually do. When I stop, Janey screams and hands me back the brush, yelling "Thirteen! Fourteen!" That is right where I left off in my silent counting. I brush up to twenty, as she screams.
9. Another middle of the night. Janey wakes me up and saying "Chinese rice!" I tell her we don't get takeout in the night. She considers that a moment, and then says "Pizza!" I repeat myself. She is undaunted..."Happy Meal! Chicken nuggets! Fries! Chocolate Milk! Toy!"
10. Janey gets off the bus and her Auntie Rose is just arriving at our house. She hugs her aunt, thrilled to see her. Auntie Rose goes upstairs to help my brother-in-law in his apartment. Janey has her snack downstairs with me, and then says "Go see Nana and Grandpa!" I tell her they are far away right now, although I suspect what she really means. She thinks a minute and says "Go see Auntie Carrie!" I tell her Auntie Carrie is even further away, in Colorado. I ask her "Do you mean Auntie Rose?" and she smiles a huge smile and says "GO SEE AUNTIE ROSE!" So we do.
Everyday life with Janey is hundreds and thousands of moments like these.
Labels:
autism,
biting,
buses,
everyday life,
family,
getting dressed,
McDonalds,
pizza,
school,
sleep,
talking,
The Little Mermaid,
TV
Monday, June 2, 2014
Screaming
Janey started screaming tonight within seconds of getting off the school bus. Before she was even in the house, the screams had reached a level of intensity that is near impossible to describe. Imagine the loudest, most intense scream you've ever heard. Imagine a horror movie scream overdone by about 200%. Imagine the most intense noise you can imagine a person making. Then double any of those. That's Janey scream at its worse.
We got her in the house, and through her yells she asked for cheese, which we got for her. Within a short time, she seemed calmed down. Tony needed to go get William at work, and Janey wanted to go. I went along, just in case. We got her a Happy Meal. All seemed okay until about half way home. And then the screaming started again.
In a car, the scream is next to impossible to deal with. Tony wanted to roll down the windows, but I said we shouldn't. If someone in a neighborhood car heard her, they would be excused in thinking she was hurt in some horrible way. But with the windows up, the sound echoes around and makes driving hellish. However, you just want to get home as quickly as possible. It's never easy to decide what to do. We decided on ignoring the screams, as much as we could. For a minute that seemed to work. She calmed down enough to ask to hear "The Ant Go Marching" on the iPod. We handed it to her playing that, and she listened for maybe half a minute, and then resumed the screaming. I started my patter, partly to calm myself and Tony and William, telling her we soon would be home, we would lie down on the bed, I would sing to her if she wanted, she could rest, she could have a nice cold drink, everything would be okay....I talk in a sing-songy calm voice that often seems to quiet her. It did a little, enough to get us home.
At home, walking in, the screaming started again. I am thankful every day for having neighbors that understand Janey. I can't imagine living in a neighborhood like some I've heard of, with neighbors without sympathy. We got her inside, I lay down with her on the bed, I did my talking, and she calmed. She is now eating like crazy---often something she does after a scream, even when she has already eaten a lot, as was the case today.
The screaming is near unbearable. It drives us into a state that doesn't feel like living. It feels like surviving, just barely. Yesterday, Sunday, also featured a huge amount of screaming, and it drove me to email the special ed coordinator for Janey to see if I could change my mind and have her go to summer school, even though I previously had been quite convinced I wanted to try not having her go this summer. But I know if every day was a screaming day during the summer, I would not make it.
I have no cheerful conclusion here. I can say SOMETIMES it seems like the screaming spells are shorter, but they are more intense than ever. They drain every inch of enthusiasm I have, every bit of hopefulness and energy. I am sure they do the same for Janey. And yet, we can't prevent them. We can't predict them. We can't consistently help them. We can only live through them. That's as positive as I'm going to get tonight.
We got her in the house, and through her yells she asked for cheese, which we got for her. Within a short time, she seemed calmed down. Tony needed to go get William at work, and Janey wanted to go. I went along, just in case. We got her a Happy Meal. All seemed okay until about half way home. And then the screaming started again.
In a car, the scream is next to impossible to deal with. Tony wanted to roll down the windows, but I said we shouldn't. If someone in a neighborhood car heard her, they would be excused in thinking she was hurt in some horrible way. But with the windows up, the sound echoes around and makes driving hellish. However, you just want to get home as quickly as possible. It's never easy to decide what to do. We decided on ignoring the screams, as much as we could. For a minute that seemed to work. She calmed down enough to ask to hear "The Ant Go Marching" on the iPod. We handed it to her playing that, and she listened for maybe half a minute, and then resumed the screaming. I started my patter, partly to calm myself and Tony and William, telling her we soon would be home, we would lie down on the bed, I would sing to her if she wanted, she could rest, she could have a nice cold drink, everything would be okay....I talk in a sing-songy calm voice that often seems to quiet her. It did a little, enough to get us home.
At home, walking in, the screaming started again. I am thankful every day for having neighbors that understand Janey. I can't imagine living in a neighborhood like some I've heard of, with neighbors without sympathy. We got her inside, I lay down with her on the bed, I did my talking, and she calmed. She is now eating like crazy---often something she does after a scream, even when she has already eaten a lot, as was the case today.
The screaming is near unbearable. It drives us into a state that doesn't feel like living. It feels like surviving, just barely. Yesterday, Sunday, also featured a huge amount of screaming, and it drove me to email the special ed coordinator for Janey to see if I could change my mind and have her go to summer school, even though I previously had been quite convinced I wanted to try not having her go this summer. But I know if every day was a screaming day during the summer, I would not make it.
I have no cheerful conclusion here. I can say SOMETIMES it seems like the screaming spells are shorter, but they are more intense than ever. They drain every inch of enthusiasm I have, every bit of hopefulness and energy. I am sure they do the same for Janey. And yet, we can't prevent them. We can't predict them. We can't consistently help them. We can only live through them. That's as positive as I'm going to get tonight.
Wednesday, December 17, 2008
The Bad McDonalds Trip
Yesterday was really something, but I am hoping perhaps it gave me some insight into Janey. I took her with me to two stores Christmas shopping. Usually she loves to shop, and I have tended to stay home too much with her in the morning before school, so I felt good about taking her out. She asked me at the second store "you want chicken nuggets?" which meant SHE wanted to go to McDonalds, and we have done that before and it's gone quite well. So we went there. I think the first problem was we couldn't sit where we did the 4 or so other times we have gone. Also, there were kids at the next table, nice kids but talkative and Janey kept hearing them. But who knows what really was happening---she kept getting more and more upset. Finally she crawled under the table to me, and just FREAKED OUT---started biting the back of the chair, the table, anything within reach, and then tried her hardest to bit me. I had to hold her coat between me and her mouth, and she bit so hard on the coat her lips was bleeding. I was truly a little scared. I knew I just had to get her out of there, and talked to her as calmly as I could and got her out as quickly as I could. She didn't say a word in the car, but as we got home, she said one of her longest statements "I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound". I really don't know if this was about the McDs, but I think it was---she heard some kind of clicking sound that sounded really loud to her, and maybe like someone was walking over to her. She kept repeating that same phrase many times. I tried of course to ask her more about it, but to no avail.
A long time ago I read a book, I think called "The Sound of a Miracle" about a girl diagnosed with autism that is "cured" by something I think is called auditory training. I thought it was pretty foolish, but now I do wonder how much sounds and extra-sensitive hearing affect Janey. I know William also has very sensitive hearing, and Tony sometimes too. And I know Janey is very bothered by things that sound wrong---songs sung in a silly way, and even things like a burb noise. A few nights ago she went crazy because I was singing "Away in a Manger" to her and said "The stars in the BRIGHT sky" instead of how I usually say it, "The Stars in the Sky". I really don't know what to do about this all, but I might try to do some more research. I know I think the expensive "training" the book talked about is a huge scam. I actually went years ago to a talk about it and was extremely underwhelmed.
Oh, well.
A long time ago I read a book, I think called "The Sound of a Miracle" about a girl diagnosed with autism that is "cured" by something I think is called auditory training. I thought it was pretty foolish, but now I do wonder how much sounds and extra-sensitive hearing affect Janey. I know William also has very sensitive hearing, and Tony sometimes too. And I know Janey is very bothered by things that sound wrong---songs sung in a silly way, and even things like a burb noise. A few nights ago she went crazy because I was singing "Away in a Manger" to her and said "The stars in the BRIGHT sky" instead of how I usually say it, "The Stars in the Sky". I really don't know what to do about this all, but I might try to do some more research. I know I think the expensive "training" the book talked about is a huge scam. I actually went years ago to a talk about it and was extremely underwhelmed.
Oh, well.
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