I think I have a plan. And that makes me very happy; Or at least makes me feel like we are heading in the right direction. I've come to many realizations today.
1. I think I am certifiably a basket case. But that's ok, because
2. I have the most amazing support system EVER. So many people so willing to lend an ear, to lend a shoulder, to lend a tissue, and to help me put the eggs back in my basket. Sometimes I can't believe I function at all, I feel like I go from such a high to such a low, to such a high, to such a low. 0-60 in 2 seconds flat.
3. The cure for a really difficult day is painting your nails in a rainbow of colors. Because each time I look down at my ridiculously colorful hands, I can't help but smile.
4. Vicki has the most amazing teachers. (This is not a new realization... it just needed to be said today). All I have to do is text, 'sh*t' to Vicki's teacher and she knows exactly what I'm talking about, exactly what to do, and exactly what to say. Among other things. )
5. I don't like giving up control. But then, I like giving up control. I want to be able to handle it all. But then I want someone else to handle it all.
6. Communication is good. Very good. Talking through things helps so much. Just having someone validate me helps tremendously. Gut instincts are good.
7. I am not looking forward to the next few weeks of developmental pediatricians, neurologists, blood work and everything else that will be coming up with it. BUT, I am looking forward to getting some answers. Either we rule out additional neurological stuff, or we find something and try to fix it.
8. It's time to relook at some biomedical stuff. We stepped back from it and now we are ready to go back to it.
9. I will do anything, ANYTHING I can to help my daughter find her way again.
10. It's always the days that you have something you need to be at that things fall apart the most. And it takes every inch of my self control to keep my emotions from creeping into the picture. When I get anxious, she gets anxious. Anxiety feeds on itself and others.
11. First grade field trips are anything but relaxing. And while I cherished the time I got with Ally today, taking that breath of fresh air and just clearing my head a bit (as much as you can clear your head with a bunch of first graders running around at a national park.), I also needed a nap when I got home. :)
12. It's hard to be a kid. Really hard. Harder than I remember. And sometimes, I am so grateful that Vicki doesn't have to deal with the politics of being a kid. That sounds odd, because of course I want Vicki to experience it all, but not having her know or understand 'kid-speak', it's kind of a nice protective response. This is not based on an interaction with Vicki today, just observation of first grade behavior.
13. The google doodle was cool today. I like zippers.
14. Joey just really rocks. I adore him.
15. And finally, sleep. It's a good thing. And I think I'm heading there soon. Armed with a new plan, a new to-do list, and hopefully a restful night of sleep... I think I can, I think I can, I think I can. Goodnight all! xoxo
Tuesday, April 24, 2012
Day 23. Year 2.
Joey has a class in school where the first thing they do when they come into class in the morning is an exercise called 'Dump your brain'. It's where they brainstorm everything that they've been learning about a subject and throw it all down on paper. So for today's post, I am going to try this exercise. I am going to dump my brain. It sounds kind of freeing, doesn't it?
Here it goes... at the end of yesterday's post I mentioned that I've had a lot of things on my mind about Vicki. What better way to try to process everything than to dump my brain, it's all kind of jumbled up there anyway. First of all, you know how when you see something day in and day out it looks different to you than it does to someone who hasn't been around the situation consistently? Like when a grandparent sees their grandchild after a few months hiatus. 'My how you have grown!' 'You seem so much older and more mature.' 'Oh what big eyes you have!' 'What big ears you have!' 'What a big mouth you have!' Oh wait, that's little red riding hood to her grandmother, the wolf in disguise. :) But anyway... I notice that with myself. I see Vicki day in and day out, and sadly, so often, I focus on her deficits, her areas of need, day in and day out. And I get frustrated. Because things cycle. They always have. I'm sure they always will. Something new crops up, a behavior of some sort, a problem that needs resolving, a puzzle that needs solving. And I spend countless hours and days and even months trying to come up with a plan. Sometimes the plan works. Sometimes it doesn't. Sometimes Vicki resolves the issue herself. Sometimes it disappears as fast as it appears. Sometimes I feel like all I do is talk and talk and talk. And nothing ever gets resolved. I see things crop up that we've dealt with countless times before. A new behavior that takes a little different shape than we saw a few years before.
Before I get into some of the issues that have been concerning to me, I thought I would try to take a step back and really take a look at the changes that Vicki has been through and all of the amazing progress she has made. I've always said that it's the little things. What I tend to forget sometimes is how all of the little things make big things, leaps and bounds. When I think back to last year at this time, and if I were to read my blog from last year, the blog has a different vibe, a different theme. I wonder how many posts last year revolved around potty issues? Quite a few I think. And I look at my blog this year, how many posts have revolved around potty issues? None that I can recall. Holy moly... that's incredible! Last year I was up late every night, spending countless hours in Vicki's room with carpet cleaner and Lysol, crying over her as I had to give her a bath and washed her up. How many times have I been up late this month? Well, that's a bad question... but I have been up for different reasons! :) That, in itself, is amazing progress. Yes, we still have an occasional accident. And yes, I have had to clean up her room. And, do I think that behavior is completely out of our lives forever? No. BUT I need to celebrate Vicki's successes! And I do, I really do. The physical and emotional changes that Vicki has gone through this past year have been tremendous. And she has embraced these changes with more poise and grace than I could have ever done. And I have to always remember that, and I do.
I know that Vicki cycles. I know that Vicki is growing and changing. And with all of the change comes tremendous emotional turmoil. For every girl who is going through puberty. I understand that hormones are crazy. And now that I am thinking of hormones, it reminds me of a cheer that we used to do back in the day... 'When you're up, you're up. When you're down, you're down. When you're messing with the best, you're upside down.' :) Truer words were never spoken.
But you know that gut feeling that you have? That mommy sense? That feeling that something is just not quite right? Well, I have it now. And I was validated, because my husband has it too. And we are the ones that have seen everything with Vicki. All of it. And if both of us think there is something wrong, we are going to check it out. Best case (or worse case) scenario, depending on how you look at it, nothing will come of it. There will be no explanation for some of the things that we are seeing with Vicki. If that's the case, then I guess we will chalk it up to hormones, development, cycling. BUT, if there is something we can do for Vicki, if there is something we can try that could help her, by golly we will do it. And at least we can say that we followed our instinct and our instinct was wrong. The overwhelming theme I think of this year's blog is struggling. Struggling with behaviors. And when we look at things that have been going on, we can't help but feel we are missing something. So, I started with the emails and the telephone calls.... unfortunately, I think it's time to revisit some biomedical interventions. And medical interventions period. I always worry more in the spring. For the past two years the March, April, May timeframe has been the season for neurological happenings. Two years ago in May is when Vicki got sick and first started having seizures and spent almost a week in the hospital. Then last year in March she was back in the ER with more seizures. She is on a daily anti-seizure medicine, but I always get more nervous around this time. And every once in a while, I get nervous... looking at things from a neurological standpoint. We used to do a lot of biomedical stuff. And we kind of got away from it... stepped back from it. It's so hard to say whether any of the supplements or interventions we have tried over the years have really helped. Was it really the supplement? Or was it just Vicki, developmentally moving on naturally? And I'm not going to lie, the supplements and the shots and the chelation we used to do with her were expensive. And nothing was covered by insurance at all. That is NOT the reason we stopped some things, but again, sometimes you have to step back and say is it really making a difference? And now, we are at the point I think, that we want to revisit some things. Take a look at some labs (and NO I am not looking forward to putting Vicki through doctor visits and blood work and everything else...) But, what if there is something off? What if there is an 'easy fix' to a few things? Not that we aren't ready and willing to ride out behaviors and support Vicki in every way we can. But some of the things we've been seeing, it's all been so strange. And if we have to chalk it up to mood swings and emotions then we will. But, something is nagging at us.
The other night at bedtime my husband and I were in with Vicki saying goodnight. And I've said before how she likes to go through her visual schedule and recall her day for us. I love that part of the day with Vicki! But things were so odd. We couldn't put our finger on it. But we both felt it. It took her at least 40 minutes to go through her day. And Vicki clearly wanted us in there with her, and she clearly wanted to tell us about her day. But it was something in her face, she was struggling. She has been amazing at recall, she shows me everyday that her memory is phenomenal. And we have barely scratched the surface of what she is capable of and has inside of her. But while she was recalling her day, she was getting stuck. Things she knows she was searching for. Her actions, both physical and speech production wise, have been off lately. Like she is in slow motion. And her words were all drawn out, 'I waaaannnnnt it, yeahhhhhh.... I wannnnnttttt itttttt......' And then nothing. She couldn't get it. She couldn't find it. She clearly wanted it. She would stop and make a sound that kind of sounded like a horse... when you put your lips together and blow out air.... She kept stopping and doing that. Like she just didn't have it. And we felt so helpless. And then she would get stuck, start stimming and repeating a word or phrase. Over and over and over and over. And then when we would try to get her to move on, she just couldn't. It was like she was stuck there, in that repetitive sequence. And her echololia has been so crazy lately. She's always echoed. And sometimes it's beneficial for skill acquisition. And sometimes it gets in the way. But it's always been there, some times more frequent than others. But it's different now. Just different. More intensity. The vocal production is more intense and more random. Before she would repeat the last thing you would say to her. Or repeat a question you would ask of her before she answered yes or no. Now it's like she is picking the most random things to repeat. And it's not even from when we are talking to her. I could be saying something to one of her aides and she overhears it and yells it. And it doesn't make any sense to me. And like I said the intensity of her echoic vocalizations is odd. The best way I can describe it.... it's almost like Tourettes... but it's not. It's like the yelling comes from nowhere. And it's loud. And she's been stimming on so much lately. And she's been yelling out more. And she's been crying. And she's been tantrumming. And she's been dropping. And we are struggling with things that she loves, like walks, and animals, and horseback riding. And sometimes she's just so vacant. Like she's there, but she's not in there at all. And even her gait... it's off. She's stopping and starting and stopping and backing up and seems to need physical touch to get going. After my husband and I came down from her room the other night, we were talking about stuff.... And we both felt it. The best way I can describe some of what we were feeling... it's almost like a TIA, or a mini stroke, only not at all. But something is blocking her. Something is going on. Maybe we are over thinking things. Maybe it is all just emotional and hormonal and testing her boundaries. And maybe it's not. But things are so off, so out of whack, we just want to help her. And it's not just us that sees these things, it's global, across the boards. Her teachers, her horseback riding instructor, her therapists. I can't even describe all of the odd things that happened yesterday after school. Things that just don't make sense. She couldn't read the books she normally reads. She just sat there. Is she just being stubborn? Defiant? A teen? Maybe, but it doesn't feel like that. She fell apart when she went to the bathroom and wouldn't move, or get up off the floor. She had trouble sitting down to the table at dinner and trouble the whole way through dinner. I just don't know.
Maybe she just doesn't know how to handle her feelings, which is totally understandable. I don't know how to handle mine. And I can describe what I am feeling, well, kind of. That's what really, really sucks. I want to help her so bad, I want to ask her so much. I want her to tell me. I just want her to tell me. I want to jump inside of her brain and untangle the kinks. I want to hold her and tell her that it's all ok. And I do.
So, that was my brain dump. Sorry you had to be privy to it. But thank you for listening. xoxo
Here it goes... at the end of yesterday's post I mentioned that I've had a lot of things on my mind about Vicki. What better way to try to process everything than to dump my brain, it's all kind of jumbled up there anyway. First of all, you know how when you see something day in and day out it looks different to you than it does to someone who hasn't been around the situation consistently? Like when a grandparent sees their grandchild after a few months hiatus. 'My how you have grown!' 'You seem so much older and more mature.' 'Oh what big eyes you have!' 'What big ears you have!' 'What a big mouth you have!' Oh wait, that's little red riding hood to her grandmother, the wolf in disguise. :) But anyway... I notice that with myself. I see Vicki day in and day out, and sadly, so often, I focus on her deficits, her areas of need, day in and day out. And I get frustrated. Because things cycle. They always have. I'm sure they always will. Something new crops up, a behavior of some sort, a problem that needs resolving, a puzzle that needs solving. And I spend countless hours and days and even months trying to come up with a plan. Sometimes the plan works. Sometimes it doesn't. Sometimes Vicki resolves the issue herself. Sometimes it disappears as fast as it appears. Sometimes I feel like all I do is talk and talk and talk. And nothing ever gets resolved. I see things crop up that we've dealt with countless times before. A new behavior that takes a little different shape than we saw a few years before.
Before I get into some of the issues that have been concerning to me, I thought I would try to take a step back and really take a look at the changes that Vicki has been through and all of the amazing progress she has made. I've always said that it's the little things. What I tend to forget sometimes is how all of the little things make big things, leaps and bounds. When I think back to last year at this time, and if I were to read my blog from last year, the blog has a different vibe, a different theme. I wonder how many posts last year revolved around potty issues? Quite a few I think. And I look at my blog this year, how many posts have revolved around potty issues? None that I can recall. Holy moly... that's incredible! Last year I was up late every night, spending countless hours in Vicki's room with carpet cleaner and Lysol, crying over her as I had to give her a bath and washed her up. How many times have I been up late this month? Well, that's a bad question... but I have been up for different reasons! :) That, in itself, is amazing progress. Yes, we still have an occasional accident. And yes, I have had to clean up her room. And, do I think that behavior is completely out of our lives forever? No. BUT I need to celebrate Vicki's successes! And I do, I really do. The physical and emotional changes that Vicki has gone through this past year have been tremendous. And she has embraced these changes with more poise and grace than I could have ever done. And I have to always remember that, and I do.
I know that Vicki cycles. I know that Vicki is growing and changing. And with all of the change comes tremendous emotional turmoil. For every girl who is going through puberty. I understand that hormones are crazy. And now that I am thinking of hormones, it reminds me of a cheer that we used to do back in the day... 'When you're up, you're up. When you're down, you're down. When you're messing with the best, you're upside down.' :) Truer words were never spoken.
But you know that gut feeling that you have? That mommy sense? That feeling that something is just not quite right? Well, I have it now. And I was validated, because my husband has it too. And we are the ones that have seen everything with Vicki. All of it. And if both of us think there is something wrong, we are going to check it out. Best case (or worse case) scenario, depending on how you look at it, nothing will come of it. There will be no explanation for some of the things that we are seeing with Vicki. If that's the case, then I guess we will chalk it up to hormones, development, cycling. BUT, if there is something we can do for Vicki, if there is something we can try that could help her, by golly we will do it. And at least we can say that we followed our instinct and our instinct was wrong. The overwhelming theme I think of this year's blog is struggling. Struggling with behaviors. And when we look at things that have been going on, we can't help but feel we are missing something. So, I started with the emails and the telephone calls.... unfortunately, I think it's time to revisit some biomedical interventions. And medical interventions period. I always worry more in the spring. For the past two years the March, April, May timeframe has been the season for neurological happenings. Two years ago in May is when Vicki got sick and first started having seizures and spent almost a week in the hospital. Then last year in March she was back in the ER with more seizures. She is on a daily anti-seizure medicine, but I always get more nervous around this time. And every once in a while, I get nervous... looking at things from a neurological standpoint. We used to do a lot of biomedical stuff. And we kind of got away from it... stepped back from it. It's so hard to say whether any of the supplements or interventions we have tried over the years have really helped. Was it really the supplement? Or was it just Vicki, developmentally moving on naturally? And I'm not going to lie, the supplements and the shots and the chelation we used to do with her were expensive. And nothing was covered by insurance at all. That is NOT the reason we stopped some things, but again, sometimes you have to step back and say is it really making a difference? And now, we are at the point I think, that we want to revisit some things. Take a look at some labs (and NO I am not looking forward to putting Vicki through doctor visits and blood work and everything else...) But, what if there is something off? What if there is an 'easy fix' to a few things? Not that we aren't ready and willing to ride out behaviors and support Vicki in every way we can. But some of the things we've been seeing, it's all been so strange. And if we have to chalk it up to mood swings and emotions then we will. But, something is nagging at us.
The other night at bedtime my husband and I were in with Vicki saying goodnight. And I've said before how she likes to go through her visual schedule and recall her day for us. I love that part of the day with Vicki! But things were so odd. We couldn't put our finger on it. But we both felt it. It took her at least 40 minutes to go through her day. And Vicki clearly wanted us in there with her, and she clearly wanted to tell us about her day. But it was something in her face, she was struggling. She has been amazing at recall, she shows me everyday that her memory is phenomenal. And we have barely scratched the surface of what she is capable of and has inside of her. But while she was recalling her day, she was getting stuck. Things she knows she was searching for. Her actions, both physical and speech production wise, have been off lately. Like she is in slow motion. And her words were all drawn out, 'I waaaannnnnt it, yeahhhhhh.... I wannnnnttttt itttttt......' And then nothing. She couldn't get it. She couldn't find it. She clearly wanted it. She would stop and make a sound that kind of sounded like a horse... when you put your lips together and blow out air.... She kept stopping and doing that. Like she just didn't have it. And we felt so helpless. And then she would get stuck, start stimming and repeating a word or phrase. Over and over and over and over. And then when we would try to get her to move on, she just couldn't. It was like she was stuck there, in that repetitive sequence. And her echololia has been so crazy lately. She's always echoed. And sometimes it's beneficial for skill acquisition. And sometimes it gets in the way. But it's always been there, some times more frequent than others. But it's different now. Just different. More intensity. The vocal production is more intense and more random. Before she would repeat the last thing you would say to her. Or repeat a question you would ask of her before she answered yes or no. Now it's like she is picking the most random things to repeat. And it's not even from when we are talking to her. I could be saying something to one of her aides and she overhears it and yells it. And it doesn't make any sense to me. And like I said the intensity of her echoic vocalizations is odd. The best way I can describe it.... it's almost like Tourettes... but it's not. It's like the yelling comes from nowhere. And it's loud. And she's been stimming on so much lately. And she's been yelling out more. And she's been crying. And she's been tantrumming. And she's been dropping. And we are struggling with things that she loves, like walks, and animals, and horseback riding. And sometimes she's just so vacant. Like she's there, but she's not in there at all. And even her gait... it's off. She's stopping and starting and stopping and backing up and seems to need physical touch to get going. After my husband and I came down from her room the other night, we were talking about stuff.... And we both felt it. The best way I can describe some of what we were feeling... it's almost like a TIA, or a mini stroke, only not at all. But something is blocking her. Something is going on. Maybe we are over thinking things. Maybe it is all just emotional and hormonal and testing her boundaries. And maybe it's not. But things are so off, so out of whack, we just want to help her. And it's not just us that sees these things, it's global, across the boards. Her teachers, her horseback riding instructor, her therapists. I can't even describe all of the odd things that happened yesterday after school. Things that just don't make sense. She couldn't read the books she normally reads. She just sat there. Is she just being stubborn? Defiant? A teen? Maybe, but it doesn't feel like that. She fell apart when she went to the bathroom and wouldn't move, or get up off the floor. She had trouble sitting down to the table at dinner and trouble the whole way through dinner. I just don't know.
Maybe she just doesn't know how to handle her feelings, which is totally understandable. I don't know how to handle mine. And I can describe what I am feeling, well, kind of. That's what really, really sucks. I want to help her so bad, I want to ask her so much. I want her to tell me. I just want her to tell me. I want to jump inside of her brain and untangle the kinks. I want to hold her and tell her that it's all ok. And I do.
So, that was my brain dump. Sorry you had to be privy to it. But thank you for listening. xoxo
Monday, April 23, 2012
Day 22. Year 2.
Apparently there is a point at which one's body says, 'Hey. That's enough already. I need sleep and I will get sleep by golly.' And apparently I reached that point last night... my apologies for being so late with my blog post. I just woke up after falling asleep on the couch last night. I am really not awake yet and I am freezing, not only did I fall asleep and not do my blog, but I fell asleep and forgot to turn the heat on. Brrrr.... it's cold in here. (Come on... anyone? Anyone?) There must be some Torros in the atmosphere. I said brrr it's cold in here. There must be some Torros in the atmosphere. Oh E Oh E Oh. Ice ice ice. Break it down. (Bring it on baby bring it on! the movie...)
Bring it on. That's my motto for the week. I'm ready. A few hours of sleep, and now my trashed house looks much more tackleable. I think I will be speed quadrant cleaning today! :) I am learning a bit though. Although my first instinct when I am getting ready for a party is to clean, clean, clean... Sometimes it's better not to scrub and clean the floors to perfection before the party, where 10 seven-year-olds will be running throughout the house and torrential rains pound away outside bringing inside all of that pollen-y stuff. Lots and lots of stuff to do this week. One thing at a time. Or a zillion things at a time. Bring it on. After some sleep I am feeling like da-da-da-daaaa.... Supermom!!
So I should have started my post off by thanking you. I could feel all of the good vibes you were sending for Vicki yesterday! And all in all, I will call yesterday a successful day! Woo hoo! Vicki never ceases to surprise me. Of course, I tried to do everything I could to set up a successful day... adding lots of visuals to her schedule to include 'nail polish, make-up, dance party, special activity, Ally birthday party, cake, ice cream... ' I let her sleep in and enjoy the rainy morning sleep. And when she got up she asked for 'Mommy take a shower'. (One could start to get a complex when your daughter keeps stimming and repeating, 'Mommy take a shower. Mommy take a shower. Mommy take a shower. Mommy take a shower.' I guess I need to take a shower. So in an effort to keep the positive vibes going. I did. :) And Vicki did her knee slap excited dance in the shower. Much better then the 2 person lift out of the shower from the day before... But I see patterns develop, and it's just not possible for me to shower with Vicki everyday. I guess this morning we shall see how it goes. Wish me luck. I guess that's the chance you take when you reinforce 'mommy take a shower', the behavior will increase. But, for yesterday, anyway... Vicki stayed happy while getting ready, and I will take that and worry about the consequences later this am...) Oh my goodness, Vicki looked absolutely adorable in her party outfit! She loved getting ready. Ally's birthday party was 'come dressed in your favorite princess colors/costume for tea'. And Vicki was Cinderella. :) Her pale baby blue baby doll dress...glittery costume diamond jewelery....blue sparkle eye shadow....blue nail polish...complete with Cinderella-esque think blue headband. I love watching her watch herself in the mirror. Autism can not take the girly girl out of the girl. And I love things that allow me to bond with my daughter. And allow Vicki and Ally to bond. And this primping for the party was exactly what we needed. :)
Not to slight Ally at all, since it was her party... She looked absolutely adorable too. My Ally Ariel. A fern green colored long skirt, a purple/gold shimmery top, a white scarf along with seashells as a belt, coordinating purple hued costume jewelry, her shimmery purple cloak, and to top it all of, a loose bun with a red Ariel inspired hair piece/braided headband weaved into her hair. Oh, and don't forget all of the gold and sparkly glitter and fairy dust for the hair and body. Mommy loves to dress up her dolls. :)
Not only did I want Vicki to have a good day, but I wanted Ally to have her special day as well. It's hard to walk that line sometimes... I've said it before, that we don't have a lot of 'play dates' come over. Things are different here. And sometimes it's easier to not. But today we just jumped right in. And I know it must sound superficial... but I don't want to invite Autism to the party. In our own home, with little girls coming over for Ally, I don't want them to see a meltdown. Or anything else that may cause stares or fear or anxiety. That sounds horrible. But Ally and Joey, they have seen so much. And are affected so much every single day. And things are so different. And they never complain. Well, ok, you got me, heck yes they complain, but not about Vicki or things we can or can't do because of autism. They are the most amazing children. Insert massive mommy bragging here.
It's the little moments. It always is. It's the little girl who looks right at Vicki and says, 'Vicki. I like your dress. You look pretty.' It's the little girl who says, 'Hi Vicki.' And Vicki looks at her and says hi. It's the little girl who scoots over at the table to make room for Vicki to sit down with them. It's the little girl who hears Vicki scream, but doesn't look away or look fearful. It's Ally who as she is opening her brand spankin' new presents, hands a new Barbie box to Vicki so she can look at it. Without hesitation. And I am crying now. And it's hard to type. And I have a lump in my throat and tears running down my face. It is so many little things.
Vicki had times where she needed, and asked, to get away from the noise and the craziness and the freeze dancing... But there were times when I wanted to give her the chance to do it. It was crazy and loud, and crowded at the table during tea time. But Vicki deserved to sit at that table as much as any other little girl there. And she did. And she sang happy birthday to Ally. And she sat with the girls during presents. And she colored. And she smiled. And she laughed. And she yelled. And she was just fine. And Ally was just fine. And I, well, the verdict is still out on that one. :)
Now, I have a lot of other things on my mind right now. A lot of things that happened with Vicki last night. A lot of things I am concerned about. And my husband, like usual, was right there, listening, talking, being amazing. And I need to think about some things. And I will post about it all tonight... Right now, I have to get ready for Monday. Monday. Monday. Thank you for party rockin' with me. Now I'm shufflin' onward. xoxo
Bring it on. That's my motto for the week. I'm ready. A few hours of sleep, and now my trashed house looks much more tackleable. I think I will be speed quadrant cleaning today! :) I am learning a bit though. Although my first instinct when I am getting ready for a party is to clean, clean, clean... Sometimes it's better not to scrub and clean the floors to perfection before the party, where 10 seven-year-olds will be running throughout the house and torrential rains pound away outside bringing inside all of that pollen-y stuff. Lots and lots of stuff to do this week. One thing at a time. Or a zillion things at a time. Bring it on. After some sleep I am feeling like da-da-da-daaaa.... Supermom!!
So I should have started my post off by thanking you. I could feel all of the good vibes you were sending for Vicki yesterday! And all in all, I will call yesterday a successful day! Woo hoo! Vicki never ceases to surprise me. Of course, I tried to do everything I could to set up a successful day... adding lots of visuals to her schedule to include 'nail polish, make-up, dance party, special activity, Ally birthday party, cake, ice cream... ' I let her sleep in and enjoy the rainy morning sleep. And when she got up she asked for 'Mommy take a shower'. (One could start to get a complex when your daughter keeps stimming and repeating, 'Mommy take a shower. Mommy take a shower. Mommy take a shower. Mommy take a shower.' I guess I need to take a shower. So in an effort to keep the positive vibes going. I did. :) And Vicki did her knee slap excited dance in the shower. Much better then the 2 person lift out of the shower from the day before... But I see patterns develop, and it's just not possible for me to shower with Vicki everyday. I guess this morning we shall see how it goes. Wish me luck. I guess that's the chance you take when you reinforce 'mommy take a shower', the behavior will increase. But, for yesterday, anyway... Vicki stayed happy while getting ready, and I will take that and worry about the consequences later this am...) Oh my goodness, Vicki looked absolutely adorable in her party outfit! She loved getting ready. Ally's birthday party was 'come dressed in your favorite princess colors/costume for tea'. And Vicki was Cinderella. :) Her pale baby blue baby doll dress...glittery costume diamond jewelery....blue sparkle eye shadow....blue nail polish...complete with Cinderella-esque think blue headband. I love watching her watch herself in the mirror. Autism can not take the girly girl out of the girl. And I love things that allow me to bond with my daughter. And allow Vicki and Ally to bond. And this primping for the party was exactly what we needed. :)
Not to slight Ally at all, since it was her party... She looked absolutely adorable too. My Ally Ariel. A fern green colored long skirt, a purple/gold shimmery top, a white scarf along with seashells as a belt, coordinating purple hued costume jewelry, her shimmery purple cloak, and to top it all of, a loose bun with a red Ariel inspired hair piece/braided headband weaved into her hair. Oh, and don't forget all of the gold and sparkly glitter and fairy dust for the hair and body. Mommy loves to dress up her dolls. :)
Not only did I want Vicki to have a good day, but I wanted Ally to have her special day as well. It's hard to walk that line sometimes... I've said it before, that we don't have a lot of 'play dates' come over. Things are different here. And sometimes it's easier to not. But today we just jumped right in. And I know it must sound superficial... but I don't want to invite Autism to the party. In our own home, with little girls coming over for Ally, I don't want them to see a meltdown. Or anything else that may cause stares or fear or anxiety. That sounds horrible. But Ally and Joey, they have seen so much. And are affected so much every single day. And things are so different. And they never complain. Well, ok, you got me, heck yes they complain, but not about Vicki or things we can or can't do because of autism. They are the most amazing children. Insert massive mommy bragging here.
It's the little moments. It always is. It's the little girl who looks right at Vicki and says, 'Vicki. I like your dress. You look pretty.' It's the little girl who says, 'Hi Vicki.' And Vicki looks at her and says hi. It's the little girl who scoots over at the table to make room for Vicki to sit down with them. It's the little girl who hears Vicki scream, but doesn't look away or look fearful. It's Ally who as she is opening her brand spankin' new presents, hands a new Barbie box to Vicki so she can look at it. Without hesitation. And I am crying now. And it's hard to type. And I have a lump in my throat and tears running down my face. It is so many little things.
Vicki had times where she needed, and asked, to get away from the noise and the craziness and the freeze dancing... But there were times when I wanted to give her the chance to do it. It was crazy and loud, and crowded at the table during tea time. But Vicki deserved to sit at that table as much as any other little girl there. And she did. And she sang happy birthday to Ally. And she sat with the girls during presents. And she colored. And she smiled. And she laughed. And she yelled. And she was just fine. And Ally was just fine. And I, well, the verdict is still out on that one. :)
Now, I have a lot of other things on my mind right now. A lot of things that happened with Vicki last night. A lot of things I am concerned about. And my husband, like usual, was right there, listening, talking, being amazing. And I need to think about some things. And I will post about it all tonight... Right now, I have to get ready for Monday. Monday. Monday. Thank you for party rockin' with me. Now I'm shufflin' onward. xoxo
Sunday, April 22, 2012
Day 21. Year 2.
You know what I love? I love cleaning. You couldn't tell by my house, or by how I complain... But at the end of a whirlwind day, there is nothing better then restoring order. I am a quadrant cleaner... (yep, just made that term up) a whole room could be an absolute mess... bags on the floor you have to walk over, random things stacked up, papers all strewn about... and yes, that bothers me... Maybe I let things get so bad because I love the feeling of accomplishing something. It looks messy. I clean, one little section at a time. I will even go so far as to move things into one little section so the rest is clean, and then, of course, I can't figure out where to put the little stack I end up with and then grab a box and put it in the basement. But that doesn't matter... :) My room is now 'clean'. It looks amazing. There is a beginning and an ending. I've restored order. And the funny thing is that once that section is cleaned... please don't put anything that doesn't belong there in that space.. 10 minutes before it could be an absolute disaster, with piles tilting over precariously. But once it's cleaned, do NOT put a receipt there. I will get very irritated. I'm pretty sure that's irrational. ;)
You know what else I love doing? Doing the prep work for a birthday party... Seriously. I love all the little crafty stuff and decorating, picking a theme, and trying to make THE perfect cake. Ahhh... but then when it's actually time for the party, I'd like to skip right over that part and get to the cleaning and restoring order again afterwards. :) That's so wrong!
Honestly, though, I am very nervous for tomorrow. I can't seem to read Vicki right now and I haven't been very good at predicting her behavior. Vicki usually loves a good party. But I'm just not sure... And, I know this may not sound the best, but I just want Ally to have her special day with her friends. I don't want added drama, you know, more than 10 7-year-olds will naturally bring to an activity. Some of the little girls don't know Vicki, and I don't want .... I don't know. I just don't know. I don't want Ally to feel uncomfortable. I don't want Vicki to feel uncomfortable. I don't want other children to feel uncomfortable. And, lets see. I just don't know. Maybe that's why I love cleaning and organizing so much. Because I know. I know if I pick something up and put it away in the right spot, then it will be cleaner. If this happens, then this happens. If it's messy and I put things away, then it's clean. Lately I don't have any if/then statements for Vicki.
Like this morning. I might have said before, 'If Vicki sees on her schedule shower, car, Ally soccer, then she will be more willing to get out of the bathtub.' Nope. Not this morning. She wanted to go in the car. But she would not get out of the bathtub. It took 2 people to finally get her out of the tub. :( Based on that struggle, I didn't think soccer would go well. Wrong again. Vicki did fine at soccer. Have I mentioned how much I love color wonder stuff?! Vicki even made the tunnel thing with her arms when Ally's team ran through. :) I love it when she participates! And I love it when I see a genuine smile from Ally when she sees Vicki cheering her on.
Well, it's ridiculously late. And I have to get up ridiculously early to finish up the pinata and some other last minute stuff... If you could, just send extra good thoughts to Vicki for tomorrow. Here's hoping we can all have a pleasant and enjoyable day.
You know what else I love doing? Doing the prep work for a birthday party... Seriously. I love all the little crafty stuff and decorating, picking a theme, and trying to make THE perfect cake. Ahhh... but then when it's actually time for the party, I'd like to skip right over that part and get to the cleaning and restoring order again afterwards. :) That's so wrong!
Honestly, though, I am very nervous for tomorrow. I can't seem to read Vicki right now and I haven't been very good at predicting her behavior. Vicki usually loves a good party. But I'm just not sure... And, I know this may not sound the best, but I just want Ally to have her special day with her friends. I don't want added drama, you know, more than 10 7-year-olds will naturally bring to an activity. Some of the little girls don't know Vicki, and I don't want .... I don't know. I just don't know. I don't want Ally to feel uncomfortable. I don't want Vicki to feel uncomfortable. I don't want other children to feel uncomfortable. And, lets see. I just don't know. Maybe that's why I love cleaning and organizing so much. Because I know. I know if I pick something up and put it away in the right spot, then it will be cleaner. If this happens, then this happens. If it's messy and I put things away, then it's clean. Lately I don't have any if/then statements for Vicki.
Like this morning. I might have said before, 'If Vicki sees on her schedule shower, car, Ally soccer, then she will be more willing to get out of the bathtub.' Nope. Not this morning. She wanted to go in the car. But she would not get out of the bathtub. It took 2 people to finally get her out of the tub. :( Based on that struggle, I didn't think soccer would go well. Wrong again. Vicki did fine at soccer. Have I mentioned how much I love color wonder stuff?! Vicki even made the tunnel thing with her arms when Ally's team ran through. :) I love it when she participates! And I love it when I see a genuine smile from Ally when she sees Vicki cheering her on.
Well, it's ridiculously late. And I have to get up ridiculously early to finish up the pinata and some other last minute stuff... If you could, just send extra good thoughts to Vicki for tomorrow. Here's hoping we can all have a pleasant and enjoyable day.
Saturday, April 21, 2012
Day 20. Year 2.
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
Last Friday night
Yeah we danced on table tops
And we took too many shots
Think we kissed but I forgot
Last Friday night
Yeah we maxed our credit cards
And got kicked out of the bar
So we hit the boulevard
Last Friday night
We went streaking in the park
Skinny dipping in the dark
Then had a menage a trois
Just wanted to preface this post with some crazy Friday night antics (courtesy of Katy Perry, pop star).
And here's what really happened. (courtesy of Rosezella, the exhausted (gasp) middle aged, not 20 anymore, mommy who likes to go on a date with her husband somewhere we can actually hear each other when we talk instead of yelling over loud music, going somewhere that doesn't make my hair smell like smoke, and then going to shop in stores that are not fun at all when you have 3 kids with 6 hands, make that 24 hands because they turn into octopuses, or is it octopii?, when they are in a store where there are breakables, then decide not to go to a movie that they really didn't want to see and pay a zillion dollars for on the big screen, so instead drive around for a few minutes because we don't want to go back home before 10 pm, because that would be really lame!! then get home, put on pj's and a movie, and I promptly fall asleep and snore loudly... which by the way I am just getting up from now and am in that slightly still groggy sleepy state, hence the really bad post!!)
Last Friday night
Yeah we went to Applebees
Can I have a water with lemon please?
It was nice out on our date.
Last Friday night
Yeah we went to TJ Maxx
Bought a candle, paid some tax
Don't forget the Dollar store.
Last Friday night
We went walking hand in hand
Didn't see the movie that we planned
Came home at 10 and fell asleep.
And you know what? That was the perfect date night for my husband and I. Wow, what a difference from 15 years ago... it's funny the things we crave now and enjoy doing together. It's just nice to take a step away, take a deep breath, and let my nerves relax a bit, which I find extremely difficult to do.
I'm honestly not sure where I am going with this tonight. In case you haven't figured this out about me... I *think* I might be an anxious person. I know that I never used to be this anxious, maybe it was just having kids, maybe it was having a child with autism, maybe it's just in my nature to be anxious. I often try to plan ahead and think out possible scenarios for what 'might' happen, or what 'could' happen. What if? Yes, I am one of those people who check the locks on our doors not once, but 10 times a night, go back to my house to make sure the curling iron (well, now just iron) is unplugged and the stove is off. And do you want to hear something crazy? I am always a bit more anxious when it is just myself and my husband going somewhere. First of all, it doesn't happen that often, when it is just us in the car without one or all of the kids. And, gosh, I hope I am not the only parent who has ever thought about this, because then I will know I am completely irrational and off the deep end... I don't think I could ever fly somewhere with just my husband. Or drive somewhere long distance with just my husband. What if something happened? Then what? What if something happened to both of us? What would happen to our kids? Maybe I'm thinking about this because I just saw flyer about learning about guardianship for a child with special needs; we attended one of those presentations in the past. And I miss my dad and I miss my dog. And I know that no one is infallible. And as much as I plan and try to control things, there are some things that are beyond our control. And there are some things that scare the shit out of me to plan. Wills and guardianship. No one ever wants to think of that kind of stuff. What would happen if something happened to both of us, who would take our kids and raise them? If that's not enough to ask someone to do, what about asking them to not only take our 3 children, but take one that is going to need support for the rest of her life. And it's not going to be easy. And I've thought and thought about this. And I sit and cry about this. Who would want Vicki? That sounds like such a horrible question! I want Vicki! I want Vicki! And everybody that knows Vicki, loves Vicki, and will always have a special place in their hearts for Vicki. But who would be able to provide the care for Vicki that she needs? Day in and day out... I HATE these questions! And I HATE thinking about things like this. And I HATE writing when I am groggy, because this is what I come up with. Things that I never really want to talk about. Things that scare me so much that I push to a little dark corner and try not to ever look at and pretend I never have to. So, I think I will push these things back into the corner, put on a smile, and sing the Katy Perry song again. 6 am is coming really fast...lots and lots of stuff to do. So, I think I will try to go to bed now. But of course, now that I am thinking about stuff now, I will go to bed and stare at the ceiling until about 4. So, maybe I should wake my husband back up and put another movie on. Because that will guarantee that I will promptly fall asleep. :) Thanks for listening to some of my little black corner stuff. I plan on being all bubble gum and cotton candy and hearts and rainbows and unicorns and glitter tomorrow. xoxo
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
Last Friday night
Yeah we danced on table tops
And we took too many shots
Think we kissed but I forgot
Last Friday night
Yeah we maxed our credit cards
And got kicked out of the bar
So we hit the boulevard
Last Friday night
We went streaking in the park
Skinny dipping in the dark
Then had a menage a trois
Just wanted to preface this post with some crazy Friday night antics (courtesy of Katy Perry, pop star).
And here's what really happened. (courtesy of Rosezella, the exhausted (gasp) middle aged, not 20 anymore, mommy who likes to go on a date with her husband somewhere we can actually hear each other when we talk instead of yelling over loud music, going somewhere that doesn't make my hair smell like smoke, and then going to shop in stores that are not fun at all when you have 3 kids with 6 hands, make that 24 hands because they turn into octopuses, or is it octopii?, when they are in a store where there are breakables, then decide not to go to a movie that they really didn't want to see and pay a zillion dollars for on the big screen, so instead drive around for a few minutes because we don't want to go back home before 10 pm, because that would be really lame!! then get home, put on pj's and a movie, and I promptly fall asleep and snore loudly... which by the way I am just getting up from now and am in that slightly still groggy sleepy state, hence the really bad post!!)
Last Friday night
Yeah we went to Applebees
Can I have a water with lemon please?
It was nice out on our date.
Last Friday night
Yeah we went to TJ Maxx
Bought a candle, paid some tax
Don't forget the Dollar store.
Last Friday night
We went walking hand in hand
Didn't see the movie that we planned
Came home at 10 and fell asleep.
And you know what? That was the perfect date night for my husband and I. Wow, what a difference from 15 years ago... it's funny the things we crave now and enjoy doing together. It's just nice to take a step away, take a deep breath, and let my nerves relax a bit, which I find extremely difficult to do.
I'm honestly not sure where I am going with this tonight. In case you haven't figured this out about me... I *think* I might be an anxious person. I know that I never used to be this anxious, maybe it was just having kids, maybe it was having a child with autism, maybe it's just in my nature to be anxious. I often try to plan ahead and think out possible scenarios for what 'might' happen, or what 'could' happen. What if? Yes, I am one of those people who check the locks on our doors not once, but 10 times a night, go back to my house to make sure the curling iron (well, now just iron) is unplugged and the stove is off. And do you want to hear something crazy? I am always a bit more anxious when it is just myself and my husband going somewhere. First of all, it doesn't happen that often, when it is just us in the car without one or all of the kids. And, gosh, I hope I am not the only parent who has ever thought about this, because then I will know I am completely irrational and off the deep end... I don't think I could ever fly somewhere with just my husband. Or drive somewhere long distance with just my husband. What if something happened? Then what? What if something happened to both of us? What would happen to our kids? Maybe I'm thinking about this because I just saw flyer about learning about guardianship for a child with special needs; we attended one of those presentations in the past. And I miss my dad and I miss my dog. And I know that no one is infallible. And as much as I plan and try to control things, there are some things that are beyond our control. And there are some things that scare the shit out of me to plan. Wills and guardianship. No one ever wants to think of that kind of stuff. What would happen if something happened to both of us, who would take our kids and raise them? If that's not enough to ask someone to do, what about asking them to not only take our 3 children, but take one that is going to need support for the rest of her life. And it's not going to be easy. And I've thought and thought about this. And I sit and cry about this. Who would want Vicki? That sounds like such a horrible question! I want Vicki! I want Vicki! And everybody that knows Vicki, loves Vicki, and will always have a special place in their hearts for Vicki. But who would be able to provide the care for Vicki that she needs? Day in and day out... I HATE these questions! And I HATE thinking about things like this. And I HATE writing when I am groggy, because this is what I come up with. Things that I never really want to talk about. Things that scare me so much that I push to a little dark corner and try not to ever look at and pretend I never have to. So, I think I will push these things back into the corner, put on a smile, and sing the Katy Perry song again. 6 am is coming really fast...lots and lots of stuff to do. So, I think I will try to go to bed now. But of course, now that I am thinking about stuff now, I will go to bed and stare at the ceiling until about 4. So, maybe I should wake my husband back up and put another movie on. Because that will guarantee that I will promptly fall asleep. :) Thanks for listening to some of my little black corner stuff. I plan on being all bubble gum and cotton candy and hearts and rainbows and unicorns and glitter tomorrow. xoxo
Thursday, April 19, 2012
Day 19. Year 2.
I decided tonight to write a song. Wanna hear it?
The emotions of my pre-teen go up and down,
Up and down, up and down.
The emotions of my pre-teen go up and down,
All day long.
The words that she repeats are, "I want no,"
"I want no, I want no,"
The words that she repeats are, "I want no,"
All day long.
The door to her room gets slammed and shut,
Slammed and shut, slammed and shut.
The door to her room gets slammed and shut,
When she gets mad.
When she doesn't get her way she screams, "Wah, wah, wah!"
"Wah, wah, wah, wah, wah, wah!"
When she doesn't get her way she screams, "Wah, wah, wah!"
All day long.
The people who don't know her just stop and stare,
Stop and stare, Stop and stare,
The people who don't know her just stop and stare,
When she has a meltdown.
The mommy smiles at her and says, "I love you,"
"I love you, I love you"
The daddy smiles at her and says, "I love you, too"
She is loved so much.
I bet you all could sing along to that tune with me. Vicki's no different than any other child, but Vicki's so different from every other child. Some times I look at her and I see a one year old who still explores objects with her mouth. Then I see a two or three year old who is just having a meltdown because they were told they can't have that piece of candy. Other times I look at Vicki and see a five year old who is testing boundaries and pushing buttons, seeing what they can get away with. Then I see a seven year old who is tickled pink with herself for doing something independently and having a job to do, being a helper. Then I blink and see an awkward teenager, trying to understand her changing body and emotions and reflection in the mirror. Then I see a twenty year old, just about taller than me, with an elegant dress on for an upcoming wedding that she is in. She takes my breath away. But you know what is hard for me to see? It's hard for me to just plain see that 9 year old that is standing in front of me. I can't even fathom how she must feel living it.
I want to share 3 things that happened tonight that clearly demonstrates that I know nothing about the inner workings of a child's mind...especially my child's mind on autism. That's an odd way to state it, but .... do you remember that public service announcement years ago... with a frying pan and an egg? 'This is your brain. This is your brain on drugs. Any questions?' I think there should be a new PSA for autism. "This is your brain. This is your brain on autism. Any questions?" But I don't see a frying pan with an egg for this one, I see a starry, starry sky and then I see bunches of beautiful fireworks going off in all directions, making the most beautiful patterns and sounds, but still scaring the crap out of me when those loud boomers get put off.
OK. Back to my 3 examples from tonight.
1. Vicki loves going on walks. And we've incorporated that into her day, so the girls that work with Vicki take her on a nice walk afterschool to enjoy the weather, get some great exercise, and just have fun. Vicki loves going on walks. But something has happened over the past month and I hate that I am terrified to take her on a walk now, especially if I am by myself with her. At some point in the walk she just shuts down and sits down. And when Vicki sits down and makes up her mind, there is no getting her to get up. And it's scary when it's on the side of the road. We don't want to hurt ourselves getting her up, and we definitely don't want to hurt Vicki. So what do we do? What do you do when nothing is motivating her to get up? When there is no reinforcer at all that will make her budge? How long can you 'wait her out?' I can't just drive the van up to her and bribe her to get in it. Anyway... we were having such a good day today, we thought we'd try again to walk. And Ally went with us on our walk. Layse black cat even went with us on our walk. And it was all good and happy and then. Boom. She sits down. After much discussion and thinking and first-thenning and trying to figure out how to get her moving again, I finally walked home with Ally and Vicki and her therapist stayed there. I didn't want to get the van. So we took Layse home and Ally got her baby stroller and some mini m & m's just in case... Well, Ally ended up eating the m & m's. And Vicki thought that Layse black cat riding in a stroller was amusing. Maybe in Vicki's mind she just decided she didn't want to sit anymore. Whatever the antecendent was, we'll take it. Oh yeah. Vicki pushed the baby stroller with Layse in it up the hill (of course the stroller was so short that she had to bend over to push... and half way through, I think her back was sore, so Ally pushed. :) And we made it home. What a feeling... seriously, we made it. Without the van, without my husband... the 4 of us conquered a walk today. And it felt great. However, I am already stressing about our next walk....
2. Vicki loves her visual schedule. Usually she has 'homework' to do afterschool. She's got her little homework square velcroed onto her schedule. And I neglected to take homework off her schedule when I saw there was nothing in her backpack. So when we got to 'homework', we said 'no homework today' and took it off. Seriously, what kid wouldn't like that? Well, Vicki. She was not happy. At all. But she worked through it after dumping out a big box of her reading books. Which she did pick up, very grudgingly. Where do kids learn those looks they give you?!? :) You know.. the, 'I want to squish you like a bug, I despise you' look? That's not in Vicki's emotion program. :)
3. Oh my gosh, oh my gosh... Vicki is amazing. I seriously am baffled with her memory. And I know that we have only touched the tip of the iceberg with her. She is brilliant. She was telling me about her day again tonight... and was talking about ABC coloring... (love those color wonder books!!! Seriously, I should buy stock in them!) Anyway, she said, 'A-red. B-yellow, C-blue, D-brown....' and went through the whole alphabet naming different colors for each letter. It had me curious. It wasn't in rainbow order which it usually is when she talks about colors... I got out her color wonder ABC book, and she was right. Every one of them. That's the color she colored the letter. How can she remember that? Now she has only colored up through 'O' I wonder if the rest that she listed is what she has chosen and will color them when she gets to it? Vicki gives me goosebumps at least 2x a day. Wow.
So, that's it for me tonight. This mommy on the computer is very tired, very tired, very tired.... :)
The emotions of my pre-teen go up and down,
Up and down, up and down.
The emotions of my pre-teen go up and down,
All day long.
The words that she repeats are, "I want no,"
"I want no, I want no,"
The words that she repeats are, "I want no,"
All day long.
The door to her room gets slammed and shut,
Slammed and shut, slammed and shut.
The door to her room gets slammed and shut,
When she gets mad.
When she doesn't get her way she screams, "Wah, wah, wah!"
"Wah, wah, wah, wah, wah, wah!"
When she doesn't get her way she screams, "Wah, wah, wah!"
All day long.
The people who don't know her just stop and stare,
Stop and stare, Stop and stare,
The people who don't know her just stop and stare,
When she has a meltdown.
The mommy smiles at her and says, "I love you,"
"I love you, I love you"
The daddy smiles at her and says, "I love you, too"
She is loved so much.
I bet you all could sing along to that tune with me. Vicki's no different than any other child, but Vicki's so different from every other child. Some times I look at her and I see a one year old who still explores objects with her mouth. Then I see a two or three year old who is just having a meltdown because they were told they can't have that piece of candy. Other times I look at Vicki and see a five year old who is testing boundaries and pushing buttons, seeing what they can get away with. Then I see a seven year old who is tickled pink with herself for doing something independently and having a job to do, being a helper. Then I blink and see an awkward teenager, trying to understand her changing body and emotions and reflection in the mirror. Then I see a twenty year old, just about taller than me, with an elegant dress on for an upcoming wedding that she is in. She takes my breath away. But you know what is hard for me to see? It's hard for me to just plain see that 9 year old that is standing in front of me. I can't even fathom how she must feel living it.
I want to share 3 things that happened tonight that clearly demonstrates that I know nothing about the inner workings of a child's mind...especially my child's mind on autism. That's an odd way to state it, but .... do you remember that public service announcement years ago... with a frying pan and an egg? 'This is your brain. This is your brain on drugs. Any questions?' I think there should be a new PSA for autism. "This is your brain. This is your brain on autism. Any questions?" But I don't see a frying pan with an egg for this one, I see a starry, starry sky and then I see bunches of beautiful fireworks going off in all directions, making the most beautiful patterns and sounds, but still scaring the crap out of me when those loud boomers get put off.
OK. Back to my 3 examples from tonight.
1. Vicki loves going on walks. And we've incorporated that into her day, so the girls that work with Vicki take her on a nice walk afterschool to enjoy the weather, get some great exercise, and just have fun. Vicki loves going on walks. But something has happened over the past month and I hate that I am terrified to take her on a walk now, especially if I am by myself with her. At some point in the walk she just shuts down and sits down. And when Vicki sits down and makes up her mind, there is no getting her to get up. And it's scary when it's on the side of the road. We don't want to hurt ourselves getting her up, and we definitely don't want to hurt Vicki. So what do we do? What do you do when nothing is motivating her to get up? When there is no reinforcer at all that will make her budge? How long can you 'wait her out?' I can't just drive the van up to her and bribe her to get in it. Anyway... we were having such a good day today, we thought we'd try again to walk. And Ally went with us on our walk. Layse black cat even went with us on our walk. And it was all good and happy and then. Boom. She sits down. After much discussion and thinking and first-thenning and trying to figure out how to get her moving again, I finally walked home with Ally and Vicki and her therapist stayed there. I didn't want to get the van. So we took Layse home and Ally got her baby stroller and some mini m & m's just in case... Well, Ally ended up eating the m & m's. And Vicki thought that Layse black cat riding in a stroller was amusing. Maybe in Vicki's mind she just decided she didn't want to sit anymore. Whatever the antecendent was, we'll take it. Oh yeah. Vicki pushed the baby stroller with Layse in it up the hill (of course the stroller was so short that she had to bend over to push... and half way through, I think her back was sore, so Ally pushed. :) And we made it home. What a feeling... seriously, we made it. Without the van, without my husband... the 4 of us conquered a walk today. And it felt great. However, I am already stressing about our next walk....
2. Vicki loves her visual schedule. Usually she has 'homework' to do afterschool. She's got her little homework square velcroed onto her schedule. And I neglected to take homework off her schedule when I saw there was nothing in her backpack. So when we got to 'homework', we said 'no homework today' and took it off. Seriously, what kid wouldn't like that? Well, Vicki. She was not happy. At all. But she worked through it after dumping out a big box of her reading books. Which she did pick up, very grudgingly. Where do kids learn those looks they give you?!? :) You know.. the, 'I want to squish you like a bug, I despise you' look? That's not in Vicki's emotion program. :)
3. Oh my gosh, oh my gosh... Vicki is amazing. I seriously am baffled with her memory. And I know that we have only touched the tip of the iceberg with her. She is brilliant. She was telling me about her day again tonight... and was talking about ABC coloring... (love those color wonder books!!! Seriously, I should buy stock in them!) Anyway, she said, 'A-red. B-yellow, C-blue, D-brown....' and went through the whole alphabet naming different colors for each letter. It had me curious. It wasn't in rainbow order which it usually is when she talks about colors... I got out her color wonder ABC book, and she was right. Every one of them. That's the color she colored the letter. How can she remember that? Now she has only colored up through 'O' I wonder if the rest that she listed is what she has chosen and will color them when she gets to it? Vicki gives me goosebumps at least 2x a day. Wow.
So, that's it for me tonight. This mommy on the computer is very tired, very tired, very tired.... :)
Wednesday, April 18, 2012
Day 18. Year 2.
So I'm calling tonight's post... 'a whole lot of random thoughts.' And I was thinking, you know how people say they can see the wheels turning when you are thinking of something?... I am picturing Fluffy the hamster (have any of you read the Fluffy early reader series? Ally and I read 'Fluffy meets the tooth fairy tonight') running in a little cage in my brain and getting dizzy from the wheel -turning one way for a second, then the opposite way, then back again. My husband gets so frustrated with me because I can never seem to finish a sentence, I'm already onto a new thought. Always thinking, that's me. :) So let me tell you some things I am thinking about.
1. I really like the new additions of Jerome, Libby, and Vlad (and Snot, who we haven't seen since he burrowed under the sand late Saturday night) to our salt water aquarium. Bob and Larry seem to be indifferent to them. These new little hermit crabs are speedy little creatures. They never stop moving. They start going one way, then turn around and go the opposite way. I think they are kindred spirits of mine. Little balls of stress and energy (not the good kind of energy where I could run a marathon, the bad kind of energy when you know you drink too much coffee!!)
2. Although I don't think you can actually classify my blog as having any kind of writing style or any kind of coherence at all, I just want you to know that I really do proof my post before I publish it. But somewhere between 'preview' and 'publish' whole paragraphs, parts of sentences and random words get lost. I think they end up in the land of lost socks. I don't usually read my posts after I publish them, but I did the other day and thought, what the heck? So, sorry!!!
3. As I sat down to type, I happened to look over at my husband's little basket he uses for emptying his pockets and stuff and noticed a colorful puzzle piece lanyard. He had been at a conference the past few days and their lanyards were autism puzzle pieces. Normally, I don't get all that excited about publicizing 'autism awareness' I guess because I am all too aware and I feel odd wearing stuff that screams autism, if Vicki is with me, you will know, I don't need to wear it on my shirt... Anyway, for some reason this lanyard made me smile and feel all warm and fuzzy.
4. I really, really love checking things off my to-do list.
5. I don't know what I would do without the drama and excitement of my family. Even though all I ever want is a few minutes of quiet, I think I thrive on being super stressed and frantic. If there weren't a zillion things going on at one time, I don't think I would know what to do with myself. Maybe I would organize tax stuff for next year. HA! I am an only child and therefore lived a fairly quiet, calm childhood. So all of this and by 'this' I mean my life with 3 kids, 1 husband, 5 hermit crabs, 1 slug (seriously, a slug - I already said my husband!) Wow... Sometimes I am so on I just want to play the ba-da-bing in the background of my hilarity. (Yes, I think I just made up a new word, if it is already a word, I really like it and will continue to use it. )
6. I think I am in a good mood tonight, which is odd. Some yucky things happened today. But so many good things happened today too. Every once in a while it is just nice to smile, take stock of everything you have to be thankful for, and then just be happy with the craziness and the chaos and the struggles... because in the end, it must make us stronger. I feel a Kelly Clarkson song coming on...
And, finally, I think I am so giddy because I had a great conversation with Vicki at bedtime. Here it is, best as I can remember it, I may have omitted or changed the order a bit, unlike Vicki... my memory is not so good! :
Me: How are you Vicki?
Vicki: I am fine.
Me: Are you happy or sad?
Vicki: Happy.
Me: Show me a happy face.
Vicki. :)
Me: What did you do today?
Vicki: Joey. school. home. take a shower. medicine. breakfast. Capri sun. granola bar. school. I pledge allegiance to the flag. Of the United States of America. And to the republic. For which it stands. One nation. Under God. Indivisible. With liberty and justice for all. Magazine. Pink Computer. Starfall. (a reading web site). Homework. Time for P.E.
Me: What did you do in P.E.?
Vicki: Balls. Red Ball. Oranges Ball. Yellow Ball. Green Balls. Blue Balls (silent snicker from mommy... what the heck? How old am I? I don't think I am a 13 year old boy!). Purple Ball. One. One Ball Red. 2 Two Ball Oranges. 3 Free Balls Yellow. 4. Four balls Green. 5. Five balls Blue. 6. Six balls Purple. Frow (throw) ball red. Frow ball oranges. Frow ball yellow. Frow ball green. Frow ball blue. Frow ball purple. Lunch. Cheese sticks. Dip. Strawberries. Apple. Fruit. Cookies.
Me: How many cookies did you eat?
Vicki: One. One cookie.
Starburst. Packback (backpack). Home. (girl's name that worked with her today). Calendar. Homework. Reading. Potty. Cars. Dance Class. Pink Dress (they got their costumes for recital tonight!). Home. Exercise. Dinner. Soup. Bread. Butter. Crackers, 5. Water/ice. Brownie, chocolate chip. (chocolate chip cookie bar). Medicine. Strawberry Milk. Clean up. Bed.
And I hang onto every word she says. I love talking to my daughter. Oh yeah. It's all worth it. A million times over. xoxo
1. I really like the new additions of Jerome, Libby, and Vlad (and Snot, who we haven't seen since he burrowed under the sand late Saturday night) to our salt water aquarium. Bob and Larry seem to be indifferent to them. These new little hermit crabs are speedy little creatures. They never stop moving. They start going one way, then turn around and go the opposite way. I think they are kindred spirits of mine. Little balls of stress and energy (not the good kind of energy where I could run a marathon, the bad kind of energy when you know you drink too much coffee!!)
2. Although I don't think you can actually classify my blog as having any kind of writing style or any kind of coherence at all, I just want you to know that I really do proof my post before I publish it. But somewhere between 'preview' and 'publish' whole paragraphs, parts of sentences and random words get lost. I think they end up in the land of lost socks. I don't usually read my posts after I publish them, but I did the other day and thought, what the heck? So, sorry!!!
3. As I sat down to type, I happened to look over at my husband's little basket he uses for emptying his pockets and stuff and noticed a colorful puzzle piece lanyard. He had been at a conference the past few days and their lanyards were autism puzzle pieces. Normally, I don't get all that excited about publicizing 'autism awareness' I guess because I am all too aware and I feel odd wearing stuff that screams autism, if Vicki is with me, you will know, I don't need to wear it on my shirt... Anyway, for some reason this lanyard made me smile and feel all warm and fuzzy.
4. I really, really love checking things off my to-do list.
5. I don't know what I would do without the drama and excitement of my family. Even though all I ever want is a few minutes of quiet, I think I thrive on being super stressed and frantic. If there weren't a zillion things going on at one time, I don't think I would know what to do with myself. Maybe I would organize tax stuff for next year. HA! I am an only child and therefore lived a fairly quiet, calm childhood. So all of this and by 'this' I mean my life with 3 kids, 1 husband, 5 hermit crabs, 1 slug (seriously, a slug - I already said my husband!) Wow... Sometimes I am so on I just want to play the ba-da-bing in the background of my hilarity. (Yes, I think I just made up a new word, if it is already a word, I really like it and will continue to use it. )
6. I think I am in a good mood tonight, which is odd. Some yucky things happened today. But so many good things happened today too. Every once in a while it is just nice to smile, take stock of everything you have to be thankful for, and then just be happy with the craziness and the chaos and the struggles... because in the end, it must make us stronger. I feel a Kelly Clarkson song coming on...
And, finally, I think I am so giddy because I had a great conversation with Vicki at bedtime. Here it is, best as I can remember it, I may have omitted or changed the order a bit, unlike Vicki... my memory is not so good! :
Me: How are you Vicki?
Vicki: I am fine.
Me: Are you happy or sad?
Vicki: Happy.
Me: Show me a happy face.
Vicki. :)
Me: What did you do today?
Vicki: Joey. school. home. take a shower. medicine. breakfast. Capri sun. granola bar. school. I pledge allegiance to the flag. Of the United States of America. And to the republic. For which it stands. One nation. Under God. Indivisible. With liberty and justice for all. Magazine. Pink Computer. Starfall. (a reading web site). Homework. Time for P.E.
Me: What did you do in P.E.?
Vicki: Balls. Red Ball. Oranges Ball. Yellow Ball. Green Balls. Blue Balls (silent snicker from mommy... what the heck? How old am I? I don't think I am a 13 year old boy!). Purple Ball. One. One Ball Red. 2 Two Ball Oranges. 3 Free Balls Yellow. 4. Four balls Green. 5. Five balls Blue. 6. Six balls Purple. Frow (throw) ball red. Frow ball oranges. Frow ball yellow. Frow ball green. Frow ball blue. Frow ball purple. Lunch. Cheese sticks. Dip. Strawberries. Apple. Fruit. Cookies.
Me: How many cookies did you eat?
Vicki: One. One cookie.
Starburst. Packback (backpack). Home. (girl's name that worked with her today). Calendar. Homework. Reading. Potty. Cars. Dance Class. Pink Dress (they got their costumes for recital tonight!). Home. Exercise. Dinner. Soup. Bread. Butter. Crackers, 5. Water/ice. Brownie, chocolate chip. (chocolate chip cookie bar). Medicine. Strawberry Milk. Clean up. Bed.
And I hang onto every word she says. I love talking to my daughter. Oh yeah. It's all worth it. A million times over. xoxo
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