Sometimes, it takes the observation of a stranger to realize things. A month or so ago, I was with Janey at our favorite store, the Savers thrift shop. She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation. She ran over to where we were and grabbed a stuffed animal. Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar" She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"
I realized at that moment that Janey is no longer wild much. She doesn't run away from me. We can go for a walk and not hold hands, and she pretty much stays with me. Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does. I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place. She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.
It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone. I think that's because stages with Janey show up much later in life than with most kids, and last much longer. That can make them seem like they are just part of her, but they aren't, always.
Another example was Janey's mischief stage. That was a tough one. She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub. Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive. That stage lasted about a year, and it was a long year. I think now it was a stage that is a typical toddler stage, exploring the world. The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler. Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much. She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.
The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage. If you have a child with autism, you probably know what I mean. It's horrible, horrible, horrible. It results in malodorous messes that take hours and hours to clean, and a feeling of total despair. That stage lasted a couple years---not with incidents every day, but more than enough. One is more than enough. Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting. Thank goodness. The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part? Hopefully gone for good.
The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids. But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer. At least some of them, though, do pass. They pass quietly. There isn't a sudden moment when they end. It's more a gradual realization that, wow, she hasn't run away from me for a long time now. She doesn't empty shampoo any more. She hasn't done the horrifying "painting" in years. Wow.
Some parts of autism are, at least for Janey, probably going to be forever. But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end. I'd say I'm even prouder of the end of those later and longer stages. And more relieved.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label spilling. Show all posts
Showing posts with label spilling. Show all posts
Monday, May 2, 2016
Thursday, January 15, 2015
Life Isn't Fair...and other negative thoughts
I will start with a confession. Almost every day, I dread Janey getting home from school. It's not that I don't want to see her, but the roughly two and a half hours between when she gets home and when Tony gets home are an extremely tough time.
I try, very hard, to figure out ways to make this time better. I've written about that before, quite a few times. I think hard about what to do to improve the time. Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home" Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things. When the weather allows it at all, we spend time outside. This spring, I plan to add a nice long walk to the daily routine.
Today, it all went downhill quickly. We had the snack---lots of leftover Chinese food. We played toys. I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so. (Actually, I played with them and she watched---that is how most of our playing goes) I read her a book about Little Ponies, and she sort of listened. Then we put on a video. She has enjoyed some Weird Al videos lately. She did today too, until one came on that bored her. I tried to find something else she'd like. I took a chance on "Dancing Queen" by Abba, which she seemed to like at first. But then she stopped liking it.
I knew she'd stopped liking it when she kicked me, hard. As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much. I cleared away quickly enough so she wasn't able to bite me, as she was trying to do. I shouted for her to get on the bed. I try to stay calm, but I wasn't feeling calm, and yes, I yelled. She got on the bed, in a fury. She tried to get up immediately, and I told her to stay where she was. She lunged at me. I walked away. She got up. I stopped trying to get her to stay on the bed. I didn't want to be bitten or hit again. She asked for strawberry milk. I said no, not right then, not the way she'd been acting. She decided to fix it herself. As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.
At this point, my mind just kept saying one thing, a not very useful thing. I was thinking "This isn't fair" I haven't really thought that in that particular way before. I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair" What I was feeling right then wasn't that, though. It was feeling that the relationship between Janey and me isn't fair. I try, I try so very hard. And she seems to try not at all. I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.
Of course, I realize that isn't fair to think. Janey is not capable of seeing things from my perspective. She isn't purposely trying to make my life hard. I am sure she doesn't want to be the way she often is, angry and destructive. But damn it, it gets hard sometimes to be her parent. It gets hard to see the silver lining.
Lately I have very little energy. I am not sure why. I am tired all the time. Some of this might be depression, or hopelessness, but a lot of it is probably physical. It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work. Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs. The tiredness, whatever the cause, isn't helping matters.
Still, things are better in a few ways, I realize even on my worst days. Janey is crying less and sleeping better. She is calmer overall, for sure, than she was during the dark days in November.
It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth. I don't like to be downbeat. It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted. I'm trying to work on that---on feeling like I have to be upbeat when I'm not. So---no cheerful ending, although I'm fighting the urge to include one pretty severely...
I try, very hard, to figure out ways to make this time better. I've written about that before, quite a few times. I think hard about what to do to improve the time. Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home" Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things. When the weather allows it at all, we spend time outside. This spring, I plan to add a nice long walk to the daily routine.
Today, it all went downhill quickly. We had the snack---lots of leftover Chinese food. We played toys. I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so. (Actually, I played with them and she watched---that is how most of our playing goes) I read her a book about Little Ponies, and she sort of listened. Then we put on a video. She has enjoyed some Weird Al videos lately. She did today too, until one came on that bored her. I tried to find something else she'd like. I took a chance on "Dancing Queen" by Abba, which she seemed to like at first. But then she stopped liking it.
I knew she'd stopped liking it when she kicked me, hard. As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much. I cleared away quickly enough so she wasn't able to bite me, as she was trying to do. I shouted for her to get on the bed. I try to stay calm, but I wasn't feeling calm, and yes, I yelled. She got on the bed, in a fury. She tried to get up immediately, and I told her to stay where she was. She lunged at me. I walked away. She got up. I stopped trying to get her to stay on the bed. I didn't want to be bitten or hit again. She asked for strawberry milk. I said no, not right then, not the way she'd been acting. She decided to fix it herself. As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.
At this point, my mind just kept saying one thing, a not very useful thing. I was thinking "This isn't fair" I haven't really thought that in that particular way before. I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair" What I was feeling right then wasn't that, though. It was feeling that the relationship between Janey and me isn't fair. I try, I try so very hard. And she seems to try not at all. I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.
Of course, I realize that isn't fair to think. Janey is not capable of seeing things from my perspective. She isn't purposely trying to make my life hard. I am sure she doesn't want to be the way she often is, angry and destructive. But damn it, it gets hard sometimes to be her parent. It gets hard to see the silver lining.
Lately I have very little energy. I am not sure why. I am tired all the time. Some of this might be depression, or hopelessness, but a lot of it is probably physical. It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work. Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs. The tiredness, whatever the cause, isn't helping matters.
Still, things are better in a few ways, I realize even on my worst days. Janey is crying less and sleeping better. She is calmer overall, for sure, than she was during the dark days in November.
It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth. I don't like to be downbeat. It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted. I'm trying to work on that---on feeling like I have to be upbeat when I'm not. So---no cheerful ending, although I'm fighting the urge to include one pretty severely...
Sunday, June 2, 2013
Assuming Janey understands---the tough part
I've been trying this weekend to assume Janey understands far more than she lets on. I was inspired to do that by what she said to her teacher for next year, which I wrote about last time. I know that at the very least, Janey understands more than she says. But what is making this hard for me is what it would mean if it were true.
One part of it is what the wonderful blogger of On the Train With Sophie commented. It's too hard sometimes to hope for that, because if we come to believe it, it will be that much more of a fall if we realize it's not true. I am like that in life. I keep my expectations low. I'd almost always rather be surprised by something going better than I expected than be disappointed by it going not as well as I expected. But for the sake of Janey, as she said, I want to take the plunge. I want to believe Janey can understand and do and learn far more than what she shows right now.
However, I think what is feeling even harder to me is trying to figure out how exactly I deal with Janey's tough behaviors if I assume they come from a place of understanding. Somehow it's easier for me to accept Janey being aggressive to me, or biting herself, or spilling things all over, or staying awake all night screaming or laughing, if I assume she doesn't understand in any way what she is doing. I can accept more than she lashes out without understanding at herself or others, or that she spills the soda all over the floor because she has no idea it will bother us, than thinking she understands just what she is doing. Because if that is the case, what kind of torment is going on in her mind that would make her bite her own arm hard? What would make her want to hurt me with biting? Why would she do something that she would know would make us furious, that she knows causes a huge fuss and scene? Is she that sad, or that angry? That is hard to think about.
I've been trying talking to Janey about things she does, like I would talk to any eight year old that would understand me. I explained why biting herself is a very bad idea, and I talked about knowing sometimes people feel very, very mad, and that it's fine to say or just to think "I am very mad at my mother!", but that biting is not okay. I tell her that she can bite a pillow or a blanket or toy, and I've been trying to catch her doing that and praising her for that. Sometimes she seems like she is listening, but I don't know.
Tonight, as I got Janey to sleep, I talked to her. I told her that I think she understands a lot of what I say, and that I am going to try harder to keep that in mind. I told her I loved her, and that I know it must be very, very frustrating if she doesn't have a way to tell me why she does the things she does, or what she is thinking, or what I can do to help her. I told her I am trying to be the best mother I can to her, but that I know I've made mistakes, and I hope she can work with me. I don't know if she understood me. I never know. That's the hard part. But it felt good to talk to her that way. I'm going to keep on trying.
One part of it is what the wonderful blogger of On the Train With Sophie commented. It's too hard sometimes to hope for that, because if we come to believe it, it will be that much more of a fall if we realize it's not true. I am like that in life. I keep my expectations low. I'd almost always rather be surprised by something going better than I expected than be disappointed by it going not as well as I expected. But for the sake of Janey, as she said, I want to take the plunge. I want to believe Janey can understand and do and learn far more than what she shows right now.
However, I think what is feeling even harder to me is trying to figure out how exactly I deal with Janey's tough behaviors if I assume they come from a place of understanding. Somehow it's easier for me to accept Janey being aggressive to me, or biting herself, or spilling things all over, or staying awake all night screaming or laughing, if I assume she doesn't understand in any way what she is doing. I can accept more than she lashes out without understanding at herself or others, or that she spills the soda all over the floor because she has no idea it will bother us, than thinking she understands just what she is doing. Because if that is the case, what kind of torment is going on in her mind that would make her bite her own arm hard? What would make her want to hurt me with biting? Why would she do something that she would know would make us furious, that she knows causes a huge fuss and scene? Is she that sad, or that angry? That is hard to think about.
I've been trying talking to Janey about things she does, like I would talk to any eight year old that would understand me. I explained why biting herself is a very bad idea, and I talked about knowing sometimes people feel very, very mad, and that it's fine to say or just to think "I am very mad at my mother!", but that biting is not okay. I tell her that she can bite a pillow or a blanket or toy, and I've been trying to catch her doing that and praising her for that. Sometimes she seems like she is listening, but I don't know.
Tonight, as I got Janey to sleep, I talked to her. I told her that I think she understands a lot of what I say, and that I am going to try harder to keep that in mind. I told her I loved her, and that I know it must be very, very frustrating if she doesn't have a way to tell me why she does the things she does, or what she is thinking, or what I can do to help her. I told her I am trying to be the best mother I can to her, but that I know I've made mistakes, and I hope she can work with me. I don't know if she understood me. I never know. That's the hard part. But it felt good to talk to her that way. I'm going to keep on trying.
Tuesday, May 21, 2013
Unlikely things autism has made me say
We never spill Cheerios all over Freddy's bed. That's not funny!
We don't eat mayonaisse/ketchup/duck sauce all by itself.
Yes, she's eight. No, she's not toilet trained. Yes, I've tried all the methods out there.
No, I haven't put her on a gluten free diet.
We NEVER take off our seat belt in the car and go into the front seat and hit Mama.
No, we can't go buy chips right now. It's 3am.
Even if you put on your shoes nicely, we aren't going to the store right now. It's 4am.
Please go back to sleep. I'm not talking about chips any more.
Tony, could you just go buy her some damn chips? It's 5am and I haven't slept.
No, I don't know what caused her autism. Do you know what caused you to ask questions like that?
No, I don't think vaccines had anything to do with it.
Janey, please, if you make a stinky on the floor, tell Mama or Daddy about it. Don't make us hunt it out.
If there were all kinds of great free respite services for autism out there, don't you think I'd be using them?
I really appreciate the thought, but a toy with 100 small pieces she could choke on is not really something we need, even if Janey does fall in the age range on the box.
No, I don't know how I do it either.
That's enough pickled vegetables for today, Janey.
I know your dog wouldn't hurt a fly, but the fact you and others let dogs run free and knock down my daughter who is terrified of dogs has caused us to no longer be able to go to most parks.
Big girls don't take off all their clothes.
We just had two baths today. That's enough baths.
We don't brush our teeth 20 times a day.
No, Janey doesn't really have any beer on ice and all her rowdy friends aren't coming over tonight. She just is a Hank Jr. fan who \memorizes songs and sings them at random times.
Thank you, teachers and aides and therapists and staff of Janey's school. I think I'd be dead without you, without a place to take Janey where I know she's safe and loved. I wouldn't make it. Literally.
Janey, I don't think it would be possible for me to love you any more than I do. I wish you were going to have an easier life. I wish you could communicate more. I wish you could tell us what makes you sad. But that doesn't change the fact that you are one amazing kid.
Sunday, May 12, 2013
Mother's Day, autism parenting style
For some reason, I was dreading Mother's Day this year. Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering. I didn't sleep well last night, thinking about a multitude of things including that.
Then, this morning, for a little bit, I had a classic Mother's Day happy interlude. For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern! I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin. I never expected to own my very own Brooklyn Lantern, good for 100,000 hours! So we were all laughing and having a wonderful time. You can almost guess what came next...
Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door. All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar. I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen. On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace. And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun. During that, she ran to our bed and got tomato sauce also all over all the bedding.
And that is Mother's Day, autism style. Autism never, ever, ever, ever takes a break. You can't let your guard down, not for 10 seconds. You can't relax and just enjoy, assuming all is fine. Every single moment has to involve autism. Every damn minute.
I don't mean to be so negative. It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband. But I am tireder than ever. It's never going to end. I'm an autism mother. I will always be an autism mother. That is my life. It's a crazy life. It has great moments. It has its rewards. And I know that's the case for any kind of mothering. Mothering isn't easy. No-one said it was. I have my own specific set of challenges, but I also have my own specific set of rewards. But just for that two minutes, couldn't Janey not have spilled that sauce?
Then, this morning, for a little bit, I had a classic Mother's Day happy interlude. For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern! I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin. I never expected to own my very own Brooklyn Lantern, good for 100,000 hours! So we were all laughing and having a wonderful time. You can almost guess what came next...
Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door. All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar. I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen. On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace. And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun. During that, she ran to our bed and got tomato sauce also all over all the bedding.
And that is Mother's Day, autism style. Autism never, ever, ever, ever takes a break. You can't let your guard down, not for 10 seconds. You can't relax and just enjoy, assuming all is fine. Every single moment has to involve autism. Every damn minute.
I don't mean to be so negative. It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband. But I am tireder than ever. It's never going to end. I'm an autism mother. I will always be an autism mother. That is my life. It's a crazy life. It has great moments. It has its rewards. And I know that's the case for any kind of mothering. Mothering isn't easy. No-one said it was. I have my own specific set of challenges, but I also have my own specific set of rewards. But just for that two minutes, couldn't Janey not have spilled that sauce?
Wednesday, June 13, 2012
Spilling on the floor
Last night was some good old times around the home. First, Janey got a container of yogurt, which she seemed to be eating nicely, until she had the sudden urge to pour it all onto the floor, slowly and deliberately. I was across the room, and couldn't get there in time to prevent a huge yogurt mess all over. We did the whole routine---make her help clean up, time out, firm tone, etc. Then she was having some oyster crackers, and again, not 10 minutes later, the whole bunch of them, thrown on the floor, again, me right there but too late to prevent it.
So what gives? All the advice I've read about autism behavior management starts with figuring out what the antecedent is. What caused the behavior to happen? I was searching my brain for that. I think what causes the behavior is a thought in Janey's mind that it would be cool to see whatever substance she is holding fall onto the floor. I think it's that simple. Sometimes it's anger, but last night, it was just plain wanting to dump things on the floor, because it's interesting to her. So how do I use that? Not let her eat? Not let her have access to anything in the house that could be spilled? Neither are possible.
And how do I discourage the behavior? Nothing works. It seems to be that almost all ways to control behavior are based on two things---wanting to please the adult and understanding cause and effect. Janey doesn't care about pleasing adults. And she doesn't seem to get cause and effect, at least beyond one level. She understands that pouring something on the floor looks interesting---that's cause and effect. But the next level is more complicated---pouring something on the floor looks interesting, but THEN Mama or Daddy makes me help clean it, puts me in time out, talks to me in an angry firm voice. That's thinking that either she doesn't get, or if she does, that she has decided is not a deterrent---the fun of the spilling is greater than the not fun afterward.
So what do I do? We already try to keep everything out of reach, but in a small house with 2 other kids, it's not possible to totally lock everything away. The fridge is bungie-corded shut, but Janey can open that now. Foods like crackers are in bins that snap shut, but she's more skilled at opening them now than the rest of us. And she does have to eat. The one thing we sometimes resort to is feeding her a bite at a time, so she doesn't have food in hand to spill. But she is closing in on being eight, and is very capable of eating on her own. Feeding her like a baby is not a long term solution. But absolutely any food or drink she can hold is subject to being tossed on the floor.
I'm at the end of ideas here. Last night just felt completely depressing. I had no idea what to do. Janey barely slept last night, and today I feel highly discouraged. I spent time when I wasn't sleeping trying my best to find some advice on-line, and I didn't. Over and over, I was told by the writing of "experts" to find that antecedent, to figure out why. I don't think that will help. Am I supposed to somehow block the part of Janey's brain that has the desire to spill? Believe me, I've filled the house with sensory toys. I've put in orders beyond what I can afford for toys that supposedly will fill her need to use household items for whatever she is craving. And they don't work. Other experts say to do what we have been doing for years. Be firm, make her help clean up, put her in time out. Great. I do that. Except for the 7 minutes she's literally made to sit in time out (by means of about 20 redirects back to the time out spot), that doesn't prevent anything. She gets back up and does it again.
I think there is a lack of true understanding of autistic kids by the experts that give advice. I don't think they totally get a child that is not motivated by pleasing adults or anyone else. I don't think they understand the combination of autism and retardation. As I have felt so often, I feel like I'm writing my own rules here, with the help of the few people that do understand, such as her teachers and therapists and other parents of children like Janey. And it feels lonely.
Wednesday, April 27, 2011
Low Optimism Day
Some days lately I can feel upbeat, but today was not one of them. If you aren't in the mood for a depressed rambling entry, you might want to skip this one.
Janey was home today and it was just such an endless depressing day. She will be back in school tomorrow, but even one day is hard. She spent the day in three ways---begging for videos which she will watch for a minute or two and then cry about or ask for another different one, crying for no reason I can figure out and laughing hysterically for no reason I can figure out. I guess there were a few food requests in there too. I tried to do so many other things. I read to her---the only book she wants lately is Dr. Seuss' ABCs, because she has a computer version of that and the book is just the same. I tried to play blocks with her. I tried to do a workbook page about shapes with her---I KNOW she knows at least circle, but she just completely wouldn't do a thing. I tried just following her lead---floor time, as they like to call it. She just cried and begged for "Kipper, Kipper!" I tried to do dishes with her "helping". She asked for a glass of water and flung it on the ground. I opened peanuts in the shell for her, the only way she likes peanuts now. I did something wrong, and she grabbed all the peanuts and flung them on my bed. I could go on and on. Just mostly picture the background sound---either a crying that never ends or a giggling kind of meaningless laughter that never ends.
And I can't help it---I extrapolate. I picture this day multiplied by a million. I picture her at 20 or 30, when I am older and more tired than I already am, everything the same. That's not fair to her. I hope she will learn, she will grow. I should look forward to the future. But I don't, lately. I am just so tired. I read an article somewhere today that said it's been shown that mothers of autistic kids have the same stress level, as measured by blood hormones, as combat soldiers. I've never been in combat, and that seems a little extreme, but not totally so. You are always on guard. You never know when something is going to go badly wrong. Even when all seems calm, in a second there can be screaming, broken things, a child running off. Even when your child is away, at school, you are waiting for a phone call. It never, ever, ever, ever ends.
Still with me? I did warn you! I'll try to get my energy and hope back soon. But not today.
Janey was home today and it was just such an endless depressing day. She will be back in school tomorrow, but even one day is hard. She spent the day in three ways---begging for videos which she will watch for a minute or two and then cry about or ask for another different one, crying for no reason I can figure out and laughing hysterically for no reason I can figure out. I guess there were a few food requests in there too. I tried to do so many other things. I read to her---the only book she wants lately is Dr. Seuss' ABCs, because she has a computer version of that and the book is just the same. I tried to play blocks with her. I tried to do a workbook page about shapes with her---I KNOW she knows at least circle, but she just completely wouldn't do a thing. I tried just following her lead---floor time, as they like to call it. She just cried and begged for "Kipper, Kipper!" I tried to do dishes with her "helping". She asked for a glass of water and flung it on the ground. I opened peanuts in the shell for her, the only way she likes peanuts now. I did something wrong, and she grabbed all the peanuts and flung them on my bed. I could go on and on. Just mostly picture the background sound---either a crying that never ends or a giggling kind of meaningless laughter that never ends.
And I can't help it---I extrapolate. I picture this day multiplied by a million. I picture her at 20 or 30, when I am older and more tired than I already am, everything the same. That's not fair to her. I hope she will learn, she will grow. I should look forward to the future. But I don't, lately. I am just so tired. I read an article somewhere today that said it's been shown that mothers of autistic kids have the same stress level, as measured by blood hormones, as combat soldiers. I've never been in combat, and that seems a little extreme, but not totally so. You are always on guard. You never know when something is going to go badly wrong. Even when all seems calm, in a second there can be screaming, broken things, a child running off. Even when your child is away, at school, you are waiting for a phone call. It never, ever, ever, ever ends.
Still with me? I did warn you! I'll try to get my energy and hope back soon. But not today.
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