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.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label everyday life. Show all posts
Showing posts with label everyday life. Show all posts
Monday, September 29, 2014
Tuesday, January 8, 2013
The everyday, autism style
I was tired today. I'm tired pretty much every day, to be honest. But today wasn't after a particularly bad night or crying spell or rough patch with Janey, and I was feeling like I should have more energy. Then I thought about how every day, every routine, every part of my life is affected by Janey and her autism. Not always in a bad way, but almost always in a tiring way. I picked one part of a typical day and thought it through---the ride to school.
We head out of the door. At the top of the steps down to the driveway, Janey stops. She stands there, looking into space, looking like she has no idea what comes next. I try hard not to take her hand and lead her down. She is very capable of walking down the steps by herself. I go to the bottom and call to her "Come on, honey. It's car time. Come down and get in the car." If she's exactly in the mood, she might, but usually she gives no sign of having heard me. Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW" That usually does it. Other days, when we are rushed, I go up, hold her hand and guide her down. We go to the car. I open the back seat. She stands by the door, again, looking confused, as if this is something we've never, ever done before. I say "Get in the car, please" She ignores me, 9 times out of 10. Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in. I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes. When she gets in, I buckle her in and we are off.
While we are driving, there are a few things I need to watch for. Janey likes to put things in her mouth. Food if possible, non-food things if that's what's around. I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker. I yell out "don't eat food you find on the seat (or floor)!" But she knows I'm driving, and she does what she wants to do. I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever. It's hard to drive when you are keeping an eye on the back seat always also. I put on music, most days. Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly. I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream. If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity. That means I need to play it again, or risk a catastrophic falling apart.
The drive to school takes around 25-30 minutes, through Boston traffic. I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most. It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness. But it's worth it, to have Janey at a school I love. She could take the bus, and I think about it, but I don't think I'm ready. Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well. Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger. The buses are often mostly empty, due to Boston's odd school zones and busing history. And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know. I might need to get past that some day, but I'm not ready to yet.
We arrive at the school, and find a place to park---often quite a challenge. There is no parking lot, just assorted on street parking. I open Janey's door and say "Unbuckle your seat beat and hop on out". Again, the blank look, as if I am asking her something bizarre and unheard-off. I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection. My aim was to teach her the right places to unbuckle, but I don't think it's worked. She finally, after the same routines of re-asking and guiding, unbuckles and gets out. I put on her backpack, and we walk in.
Lots of people say hi to Janey. She never answers, in the morning anyway. Sometimes in the afternoon. She goes into the school with her blank, stoic look. Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is. She usually just stops in place if I let go. It's like I am her motor.
When we get to her room, I give her a kiss. Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion. I don't linger, but I stay long enough to see her standing there, waiting for the next reminder. She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack? Wow, that never once would have occurred to me!" I get in the car and head home. Sometimes, I take a nap right away. And I try to not judge myself for that.
We head out of the door. At the top of the steps down to the driveway, Janey stops. She stands there, looking into space, looking like she has no idea what comes next. I try hard not to take her hand and lead her down. She is very capable of walking down the steps by herself. I go to the bottom and call to her "Come on, honey. It's car time. Come down and get in the car." If she's exactly in the mood, she might, but usually she gives no sign of having heard me. Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW" That usually does it. Other days, when we are rushed, I go up, hold her hand and guide her down. We go to the car. I open the back seat. She stands by the door, again, looking confused, as if this is something we've never, ever done before. I say "Get in the car, please" She ignores me, 9 times out of 10. Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in. I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes. When she gets in, I buckle her in and we are off.
While we are driving, there are a few things I need to watch for. Janey likes to put things in her mouth. Food if possible, non-food things if that's what's around. I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker. I yell out "don't eat food you find on the seat (or floor)!" But she knows I'm driving, and she does what she wants to do. I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever. It's hard to drive when you are keeping an eye on the back seat always also. I put on music, most days. Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly. I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream. If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity. That means I need to play it again, or risk a catastrophic falling apart.
The drive to school takes around 25-30 minutes, through Boston traffic. I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most. It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness. But it's worth it, to have Janey at a school I love. She could take the bus, and I think about it, but I don't think I'm ready. Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well. Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger. The buses are often mostly empty, due to Boston's odd school zones and busing history. And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know. I might need to get past that some day, but I'm not ready to yet.
We arrive at the school, and find a place to park---often quite a challenge. There is no parking lot, just assorted on street parking. I open Janey's door and say "Unbuckle your seat beat and hop on out". Again, the blank look, as if I am asking her something bizarre and unheard-off. I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection. My aim was to teach her the right places to unbuckle, but I don't think it's worked. She finally, after the same routines of re-asking and guiding, unbuckles and gets out. I put on her backpack, and we walk in.
Lots of people say hi to Janey. She never answers, in the morning anyway. Sometimes in the afternoon. She goes into the school with her blank, stoic look. Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is. She usually just stops in place if I let go. It's like I am her motor.
When we get to her room, I give her a kiss. Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion. I don't linger, but I stay long enough to see her standing there, waiting for the next reminder. She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack? Wow, that never once would have occurred to me!" I get in the car and head home. Sometimes, I take a nap right away. And I try to not judge myself for that.
Subscribe to:
Posts (Atom)