Saturday, April 6, 2013
Day 5. Year 3.
Those of you who know Vicki personally know that Vicki loves music. She always has. Even from the time she was wee little I remember thinking that if I could sing my entire day with Vicki, I would. She would always seem more responsive when I would sing something... and not judgemental on my musical ability or not-ability. Ha ha!
I love it when Vicki hums. I love it when Vicki sings. I love it when Vicki is happy. You can always tell when Vicki is a happy Vicki. I can hear her singing when I go to get her up in the mornings. And this morning was one of those good singing mornings. One of the things I love about music is something I never thought of before I had Vicki. You know how you sing along to your favorite songs? Well, with Vicki sometimes I'll sing a line of a song and then Vicki will sing the next line in the song. And then I will sing the next line. And then Vicki. And then me. And before you know it, we are talking. :) Well, singing together. But it is so much more than that. It is something I long for with Vicki. Something that she doesn't do often. It's a back and forth exchange. I say something. She responds. She says something. I respond. It doesn't get much better than that. And I am forever grateful for those moments. Vicki is right there with me. Smiling a little smile. Singing so beautifully. Filling my heart with the sweet music of her voice.
What song was she singing today? One of my current favorites by Alicia Keys... Girl on Fire.
I really like that song. Especially when the drum starts in... it feels to me like such an empowering song. When I hear it, I get the shivers. It makes me think I can do anything. Especially sing. ;)
And there is nothing more beautiful than hearing Vicki sing this song. I haven't been able to get this song out of my head all day.
And then more I sing it and think about this song, the more I think it was meant for Vicki. :)
Listen.
She's just a girl and she's on fire,,,
Filled with catastrophe, but she knows she can fly away...
Ohhhh oh oh oh oh
This girl is on fire... This girl is on fire... She's walking on fire... This girl is on fire...
Looks like a girl, but she's a flame
So bright, she can burn your eyes
Better look the other way
You can try but you'll never forget her name
Everybody stares, as she goes by...
Nobody knows that she's a lonely girl
And it's a lonely world But she gon' let it burn, baby, burn, baby
This girl is on fire...
And I love watching all my kids burn brightly. xoxo
Day 4. Year 3.
My apologies: I don't like skipping days on my blog when I am writing. I wrote a post yesterday, and then my Internet connection went down and I couldn't get it to post. So, here is last night's blog post, tonight. And tonight's will be coming along shortly :)
When I decided to start this blog 2 years ago, I chose April, of course, because April is Autism Awareness Month. I neglected to put 2 and 2 together that the kids spring break always fall in April as well, as does Easter, most of the time. We usually try to do some fun things with the kiddos to keep them busy over Spring Break, which means that I am not usually at home sitting at my desk working on my computer.I feel like such a slacker. But on the bright side... we've been having a fabulous break! Anywho.... here's last night's post:
I like making 'To-Do Lists'. (I don't actually like doing them, but I like making them!) What gratification I get when I can check off one of the boxes on my list. It feels so go. It feels so productive.It makes me feel so organized.
I feel like I always have a "Vicki To-Do List"... Although her list usually seems to read like this,"Vicki's To-Do-To-Try-Like-Heck-To-Figure-Out-What-Is-Going-On-List." I forget myself and focus so much on trying to fix the bad things, all of the things that are going wrong and making life a little bit tricky. I feel like I continue to revisit so many behavioral concerns and issues. I can never put a check mark in the box on Vicki's To-Do-List in pen. It's got to be in pencil because I constantly have to erase it and bring it back. And sometimes it's so frustrating because I think, 'Damn. I am over this. I don't want to go back there again!' (For example, I am back to washing her bed sheets just about every morning because she is having pee accidents again in the overnight hours.. And Vicki is having difficulty again- She is having poop accidents at least 1-2 times a day.) I don't want to dwell on this issue tonight... I just wanted to give an example of things on Vicki's To Do List that I wish I could check off in pen, you know?
But tonight I choose to be positive. Did today go fantastic? No. Not at all. We had lots of issues. But it's so exhausting --- re-thinking and re-hashing and re-living different aspects of autism. Sometimes I really want to talk about it, other times, I don't. I really need to start making more mental "Vicki Did-It Lists".
For example. This morning Vicki woke up and as I was making her bed, I found a tooth. She's been talking about this tooth of hers for a few months now. This was her last baby tooth that she had yet to lose. Yes, I am such a sappy mommy. I teared up a little thinking that my baby girl has no more 'baby' teeth to lose. :( Anyway, for months Vicki had been telling us that her tooth was uncomfortable, which in itself, should make the 'Vicki Did-It List". The first time she said 'hurt' and pointed to her tooth, I did quite the happy dance inside. Kind of made me feel bad that I was so elated that Vicki was hurting. I, of course, wasn't happy that she was hurting, but for her to express to us that she was hurting, was AMAZING! And Vicki would tell us time and time again, in so many ways that she wanted that tooth to come out. 'Mommy. Daddy. Wiggle. Tooph. Right here. Wiggle. Hurt.' And she would point to her tooth. We would try to wiggle her tooth around for her and kept telling her not yet. 'Not yet.' she would repeat. And then she would say, 'Maybe tomorrow.' (Because a lot of the times that Vicki wants something to happen, such as going out for dinner... we'll say, 'not today'. And she'll say, 'Tomorrow'. Then we will say, 'Maybe tomorrow'. :) Then Vicki would tell us to 'peel' it. I think she was trying to say 'pull it' the first time and it just turned into 'peel it'. Vicki also say, 'knife. cut. right here.' and she would point to her mouth. And of course, I got pretty nervous when she said, 'knife. cut.' But look at all the ways she was telling us that she wanted her tooph to come out. :)
It just reminded me today when I picked her tooth up out of her bed how far we have come, how far Vicki has come. I remember that day she lost her first tooth years ago. For at least 2 hours she cried. She kept trying to put her tooth back in her mouth. It was heartbreaking to watch. (Thankfully Joey had just lost his first tooth like a day or 2 before that and he kept showing Vicki his toothless grin.) Each tooth that Vicki has lost since then has progressively gotten easier. And each one of those successes should be checked off on my 'Vicki-Did-It List'. Each instance should be celebrated. EVERY moment is a learning moment. For me. For Vicki.
I know this probably doesn't seem like much of a post tonight, but it really made me think. And I think I really like celebrating my 'Vicki-Did-It List'. It's much better than my "Vicki's To-Do-To-Try-Like-Heck-To-Figure-Out-What-Is-Going-On-List." Each list has a prominent place on my refrigerator though, and on my heart. And it's so important to check things off both of those lists. Here's to a check mark in pen by 'Vicki lost her last baby tooth today.' xoxo
When I decided to start this blog 2 years ago, I chose April, of course, because April is Autism Awareness Month. I neglected to put 2 and 2 together that the kids spring break always fall in April as well, as does Easter, most of the time. We usually try to do some fun things with the kiddos to keep them busy over Spring Break, which means that I am not usually at home sitting at my desk working on my computer.I feel like such a slacker. But on the bright side... we've been having a fabulous break! Anywho.... here's last night's post:
I like making 'To-Do Lists'. (I don't actually like doing them, but I like making them!) What gratification I get when I can check off one of the boxes on my list. It feels so go. It feels so productive.It makes me feel so organized.
I feel like I always have a "Vicki To-Do List"... Although her list usually seems to read like this,"Vicki's To-Do-To-Try-Like-Heck-To-Figure-Out-What-Is-Going-On-List." I forget myself and focus so much on trying to fix the bad things, all of the things that are going wrong and making life a little bit tricky. I feel like I continue to revisit so many behavioral concerns and issues. I can never put a check mark in the box on Vicki's To-Do-List in pen. It's got to be in pencil because I constantly have to erase it and bring it back. And sometimes it's so frustrating because I think, 'Damn. I am over this. I don't want to go back there again!' (For example, I am back to washing her bed sheets just about every morning because she is having pee accidents again in the overnight hours.. And Vicki is having difficulty again- She is having poop accidents at least 1-2 times a day.) I don't want to dwell on this issue tonight... I just wanted to give an example of things on Vicki's To Do List that I wish I could check off in pen, you know?
But tonight I choose to be positive. Did today go fantastic? No. Not at all. We had lots of issues. But it's so exhausting --- re-thinking and re-hashing and re-living different aspects of autism. Sometimes I really want to talk about it, other times, I don't. I really need to start making more mental "Vicki Did-It Lists".
For example. This morning Vicki woke up and as I was making her bed, I found a tooth. She's been talking about this tooth of hers for a few months now. This was her last baby tooth that she had yet to lose. Yes, I am such a sappy mommy. I teared up a little thinking that my baby girl has no more 'baby' teeth to lose. :( Anyway, for months Vicki had been telling us that her tooth was uncomfortable, which in itself, should make the 'Vicki Did-It List". The first time she said 'hurt' and pointed to her tooth, I did quite the happy dance inside. Kind of made me feel bad that I was so elated that Vicki was hurting. I, of course, wasn't happy that she was hurting, but for her to express to us that she was hurting, was AMAZING! And Vicki would tell us time and time again, in so many ways that she wanted that tooth to come out. 'Mommy. Daddy. Wiggle. Tooph. Right here. Wiggle. Hurt.' And she would point to her tooth. We would try to wiggle her tooth around for her and kept telling her not yet. 'Not yet.' she would repeat. And then she would say, 'Maybe tomorrow.' (Because a lot of the times that Vicki wants something to happen, such as going out for dinner... we'll say, 'not today'. And she'll say, 'Tomorrow'. Then we will say, 'Maybe tomorrow'. :) Then Vicki would tell us to 'peel' it. I think she was trying to say 'pull it' the first time and it just turned into 'peel it'. Vicki also say, 'knife. cut. right here.' and she would point to her mouth. And of course, I got pretty nervous when she said, 'knife. cut.' But look at all the ways she was telling us that she wanted her tooph to come out. :)
It just reminded me today when I picked her tooth up out of her bed how far we have come, how far Vicki has come. I remember that day she lost her first tooth years ago. For at least 2 hours she cried. She kept trying to put her tooth back in her mouth. It was heartbreaking to watch. (Thankfully Joey had just lost his first tooth like a day or 2 before that and he kept showing Vicki his toothless grin.) Each tooth that Vicki has lost since then has progressively gotten easier. And each one of those successes should be checked off on my 'Vicki-Did-It List'. Each instance should be celebrated. EVERY moment is a learning moment. For me. For Vicki.
I know this probably doesn't seem like much of a post tonight, but it really made me think. And I think I really like celebrating my 'Vicki-Did-It List'. It's much better than my "Vicki's To-Do-To-Try-Like-Heck-To-Figure-Out-What-Is-Going-On-List." Each list has a prominent place on my refrigerator though, and on my heart. And it's so important to check things off both of those lists. Here's to a check mark in pen by 'Vicki lost her last baby tooth today.' xoxo
Thursday, April 4, 2013
Day 3. Year 3.
I don't know what to say tonight.
That's odd.
I always have something to say.
Do you ever plan something out in your head? And think that plan is just FANTASTIC. But then something happens - maybe just one little thing doesn't go exactly like you wanted it to. And then BAM. That's it. The whole plan is sunk. It's not really sunk, but to you it is. And then you just jump ship.Throw that plan right out the window. And then sulk. Because you really wanted things to go EXACTLY as you envisioned them to go. And when they didn't... well then forget it.No? Just me? :) I really must be a control freak. Ha ha. Don't answer that! Anyway... I can't remember why I started talking about this.
Oh yeah. My blog post for tonight. I had this fantastic idea for a post. And then little things changed. I can't access my computer tonight, I am using my husband's. And the stuff I wanted for my post was on my computer. And that irritated me. I almost gave up and threw my blog post for tonight out the window. (But I didn't - So I guess I am proud of myself for that). I am, however, cursing the keyboard constantly as I am typing. The keys are touchy and for some random reason the cursor just places itself wherever it wants in the middle of my sentence. And I didn't go to bed last night until 4:45. And I got up at 6:15. Don't ask why. I'm sure it has something to do with silly plans in my head and checklists that needed to be checked off before we could finish enjoying the kids spring break this week. Blah. Blah. Blah. So, pardon me if I am less coherently putting my thoughts together than usual. :)
Where was I? Oh yeah. My blog post that doesn't seem to be coming together tonight because I can't use my own computer. One little thing. And it really has thrown me off. It makes me think about Vicki. For those of you who read my blog last year, you know we have been struggling with other issues with Vicki beyond the scope of autism. We've got seizures. And we've got PANDAS. And we've got OCD. And we've got behaviors. And we've got hormones. And we've got.... And we've got.... Sometimes I get so focused on the treatment. It's hard not to. Time. Money. Meetings. Doctors. More meetings. More money. More time. More doctors. Sometimes I forget to look at Vicki as a normal human being. I don't want that to sound horrible. I don't mean it horrible. I just mean that I look for reasons, I collect data. I give updates. Antecedent. Behavior. Consequence. Antecedent. Behavior. Consequence. ...
I freak out when I look at some of Vicki's OCD tendencies. Sometimes I freak out because I remember... past experience has told me that when _____ happens with Vicki then I can expect that _____ will follow. Sometimes I think I am just afraid. Afraid of how quickly Vicki can develop a new routine, and sometimes these new routines are not good. Not good at all. And then they are hard to break.
Sometimes It scares me because I don't even realize how rote her behaviors are. I don't even know there is a routine built into a routine in Vicki's mind. Until something disrupts that routine. And then. Uh-oh. Spaghetti-oh. That really sucks.
Let me give you and example. Last year when PANDAS was at it's most frightening and debilitating with Vicki, we struggled to get Vicki to school. It would take hours to get her through her morning routine on her schedule and get her into the school building.. I actually just started shaking thinking about it. And then with these stupid keyboard keys and my lack of sleep. It's not a good combo. :) Anyway... we have painstakingly worked through things over the course of this year. With medication and behavior modification and lots of other things. And it seems to be working. For the moment. I haven't been able to take a shower by myself since late August though because that's part of the modifications we made to get Vicki through some very difficult times... And now, I can't get her to shower by herself. I'll save some thoughts on this for another post. Right now I was just trying to explain that sometimes I looked at the bigger picture. Vicki's need to get to school in a timely manner. So... this year we have been successful with it. Then a few weeks ago as Vicki was getting ready for school.... (on her morning schedule she has mommy, take a shower, car, Joey, school, home, medicine, old medicine {Vicki's word for crushed up medicine in Gerber fruit medley baby food}, calendar, call of the wildman {a TV show Vicki was obsessed with, and now I think she just needs to have it on because it's comforting for her}, then car and Vicki school. It has all been going very well. And then a few weeks ago when I told her to clean up her books because it was time for car and school.... it happened. She was putting her princess books back on the bookshelf. And she couldn't find one of the princess books. And she couldn't move on from it. I guess I don't even pay attention to some of her routines for things.. until something happens. She must put the princess books in order on the shelf. And she kept saying. Belle. Belle. Belle. Belle. Yellow book. And even though it was only about 5 minutes before we found her yellow Belle book, those 5 minutes seemed like 5 hours. And I know deep down that if we wouldn't have found that Belle book, I would not have been able to move her out of the living room and into the car for school. And that scares the shit out of me. Pardon my language.
Anyway. I guess I found something to say today.
That's not odd.
I always find something to say. :)
I'm not sure it made any sense tonight though. I have a lot more to ponder on the this subject .. of routines and OCD. I've been thinking about it a whole lot lately. I will try to tackle it again when I have a solid night's sleep behind me. :) But for now, for tonight, as I was sulking about my ruined blog plans for the night... it's a very interesting parallel for me to draw. Between myself and Vicki. What can make a person be able to get through it? That little change in routine that just throws everything off? What kind of coping mechanisms are needed? How do you break through that brick wall when you hit it with full force? How do you move on from something that you just can't seem to move on from? Well, I think I've hit my brick wall for tonight. I need to move myself on to bed.
Thanks for taking the time to read my incoherent nonsense tonight! xoxo
That's odd.
I always have something to say.
Do you ever plan something out in your head? And think that plan is just FANTASTIC. But then something happens - maybe just one little thing doesn't go exactly like you wanted it to. And then BAM. That's it. The whole plan is sunk. It's not really sunk, but to you it is. And then you just jump ship.Throw that plan right out the window. And then sulk. Because you really wanted things to go EXACTLY as you envisioned them to go. And when they didn't... well then forget it.No? Just me? :) I really must be a control freak. Ha ha. Don't answer that! Anyway... I can't remember why I started talking about this.
Oh yeah. My blog post for tonight. I had this fantastic idea for a post. And then little things changed. I can't access my computer tonight, I am using my husband's. And the stuff I wanted for my post was on my computer. And that irritated me. I almost gave up and threw my blog post for tonight out the window. (But I didn't - So I guess I am proud of myself for that). I am, however, cursing the keyboard constantly as I am typing. The keys are touchy and for some random reason the cursor just places itself wherever it wants in the middle of my sentence. And I didn't go to bed last night until 4:45. And I got up at 6:15. Don't ask why. I'm sure it has something to do with silly plans in my head and checklists that needed to be checked off before we could finish enjoying the kids spring break this week. Blah. Blah. Blah. So, pardon me if I am less coherently putting my thoughts together than usual. :)
Where was I? Oh yeah. My blog post that doesn't seem to be coming together tonight because I can't use my own computer. One little thing. And it really has thrown me off. It makes me think about Vicki. For those of you who read my blog last year, you know we have been struggling with other issues with Vicki beyond the scope of autism. We've got seizures. And we've got PANDAS. And we've got OCD. And we've got behaviors. And we've got hormones. And we've got.... And we've got.... Sometimes I get so focused on the treatment. It's hard not to. Time. Money. Meetings. Doctors. More meetings. More money. More time. More doctors. Sometimes I forget to look at Vicki as a normal human being. I don't want that to sound horrible. I don't mean it horrible. I just mean that I look for reasons, I collect data. I give updates. Antecedent. Behavior. Consequence. Antecedent. Behavior. Consequence. ...
I freak out when I look at some of Vicki's OCD tendencies. Sometimes I freak out because I remember... past experience has told me that when _____ happens with Vicki then I can expect that _____ will follow. Sometimes I think I am just afraid. Afraid of how quickly Vicki can develop a new routine, and sometimes these new routines are not good. Not good at all. And then they are hard to break.
Sometimes It scares me because I don't even realize how rote her behaviors are. I don't even know there is a routine built into a routine in Vicki's mind. Until something disrupts that routine. And then. Uh-oh. Spaghetti-oh. That really sucks.
Let me give you and example. Last year when PANDAS was at it's most frightening and debilitating with Vicki, we struggled to get Vicki to school. It would take hours to get her through her morning routine on her schedule and get her into the school building.. I actually just started shaking thinking about it. And then with these stupid keyboard keys and my lack of sleep. It's not a good combo. :) Anyway... we have painstakingly worked through things over the course of this year. With medication and behavior modification and lots of other things. And it seems to be working. For the moment. I haven't been able to take a shower by myself since late August though because that's part of the modifications we made to get Vicki through some very difficult times... And now, I can't get her to shower by herself. I'll save some thoughts on this for another post. Right now I was just trying to explain that sometimes I looked at the bigger picture. Vicki's need to get to school in a timely manner. So... this year we have been successful with it. Then a few weeks ago as Vicki was getting ready for school.... (on her morning schedule she has mommy, take a shower, car, Joey, school, home, medicine, old medicine {Vicki's word for crushed up medicine in Gerber fruit medley baby food}, calendar, call of the wildman {a TV show Vicki was obsessed with, and now I think she just needs to have it on because it's comforting for her}, then car and Vicki school. It has all been going very well. And then a few weeks ago when I told her to clean up her books because it was time for car and school.... it happened. She was putting her princess books back on the bookshelf. And she couldn't find one of the princess books. And she couldn't move on from it. I guess I don't even pay attention to some of her routines for things.. until something happens. She must put the princess books in order on the shelf. And she kept saying. Belle. Belle. Belle. Belle. Yellow book. And even though it was only about 5 minutes before we found her yellow Belle book, those 5 minutes seemed like 5 hours. And I know deep down that if we wouldn't have found that Belle book, I would not have been able to move her out of the living room and into the car for school. And that scares the shit out of me. Pardon my language.
Anyway. I guess I found something to say today.
That's not odd.
I always find something to say. :)
I'm not sure it made any sense tonight though. I have a lot more to ponder on the this subject .. of routines and OCD. I've been thinking about it a whole lot lately. I will try to tackle it again when I have a solid night's sleep behind me. :) But for now, for tonight, as I was sulking about my ruined blog plans for the night... it's a very interesting parallel for me to draw. Between myself and Vicki. What can make a person be able to get through it? That little change in routine that just throws everything off? What kind of coping mechanisms are needed? How do you break through that brick wall when you hit it with full force? How do you move on from something that you just can't seem to move on from? Well, I think I've hit my brick wall for tonight. I need to move myself on to bed.
Thanks for taking the time to read my incoherent nonsense tonight! xoxo
Tuesday, April 2, 2013
Day 2. Year 3.
Ahhh... I made it! Notice the time stamp on my April 1 blog entry. 11:59. Yeah, that's right! :) I apologize for the post about nothing. We were actually in PA visiting family over the holiday and just got back in town tonight. At 10:25pm. We unloaded the van, Vicki had to have peach pie for dessert, because she had dessert on her schedule and she had been staring at the peach pie the whole drive home. So, she had some pie and she took her medicine. We all got our pj's on and the kids really, really, really, wanted to find their Easter Baskets that the bunny hid while we were away. So after finding baskets, and eating a piece of chocolate or two... (please don't judge! ;) This REALLY isn't the norm. REALLY!) I got to log onto the computer at 11:40pm. Phew.
So, now I have a little bit more time to play with! Well, technically today is "World Autism Day". Light it up blue for autism awareness. Are you ready for a little irony? Guess what my post is about today? Yup. Feeling Blue.
I've know autism for 11 years now. And when I think about it, it's odd... Usually the longer you know a person, the more you get to know them. The more you understand them. The more you 'get' them. It's just the opposite for me with autism. I feel like I know less about autism today than I did a few years ago. I feel like I understand less about autism that I did a few years ago. I feel like I don't 'get' autism at all. BUT... I do know my Vicki. Well. Kind of.
I know that she's 5'4" tall now. (1/4" taller than her momma!). I know that she has the most beautiful blue eyes I've ever looked into and when she makes eye contact with me, really makes eye contact, it give me goose bumps. Her lashes curl around her big round eyes and when I (rarely) get the pleasure of watching her sleep, they flutter on the top of her cheeks like little butterfly wings. I know that Vicki has the most beautiful curly hair I have ever seen. The curls just jump and skip and laugh right along with Vicki. I know that there is nothing sweeter than hearing Vicki hum a song and sing a few lines. I know that I have never seen another person enjoy life with as much zest and freshness and pureness as Vicki does. I could go on and on about what I know about Vicki. And I will for the next 29 days. :)
But today I wanted to talk to you about feeling blue. And this is something that has been killing me lately and tugging at the deepest parts of my being. There are so many things that I don't know about my sweet Vicki.
I am lucky that I know what Vicki's voice sounds like. So many parents don't have that luxury. There was nothing more melodic than hearing her say I love you the first time. Even if I fully prompted her to say it. She said it. And she does speak. And for that I am grateful. BUT... I think it's a hard spot to be in. Yes, Vicki has language. And she speaks. But she doesn't converse. Not really. She answers questions with rote responses. She demands things in one or two word phrases to get her basic needs met. Now, I am not making this any less amazing than it is. It has taken years and years and hours upon countless hours and so much hard work and determination for Vicki to gain the language skills she has. I don't take any of it for granted. And recently she has shown us a little bit more of what she has locked away in some deep recesses of her mind. And it is nothing short of amazing. I love discovering it. I love Vicki sharing it.
But what I am talking about here today is sadness. I know Vicki has been a teenager for a few years already... even if she is only 10 years old. Her body is way older than 10. And her mind is much younger. And I can't imagine how that feels. That's just it. I have no idea how that feels because Vicki can't tell me. And people keep telling me that it's normal for teenagers to be sad and to cry. I know. I was once one... many, many years ago. I know that, heck, even now, I don't know why I am sad sometimes. My husband will come home and just look at me and the tears will start rolling down my cheeks.... What's wrong? I don't know I snivel. Why are you crying? I have no idea. :) Right? We all go through that. And I am sure that Vicki goes through that as well. Maybe she is just going through all of the teenage hormones and stuff and she just cries. So, how is that any different, her crying and not saying anything? and me crying and telling my husband that I have no idea why I am crying?
It's different to me. Because it's different. Because sometimes I know exactly why I am crying. I have all these little thought fragments running around in my head. And eventually they spill out, not it tears, but in words. And that's why I am so sad sometimes. Because when Vicki cries. No words spill out. Just tears. And the anguished look in her eyes... speak volumes to me. She has never been able to tell my why she is crying. Sometimes I try to guess in my head. Maybe sometimes there are no reasons. But it's the times when I think there may be reasons.. and I don't know how to comfort her. Because I just don't know what to say. Because I just don't know.
And Vicki has been crying a lot lately. Like a lot. For example, I think she cried at least 15-20 different times between Saturday and Sunday this weekend. And sometimes when I look at her crying, it is so hard to look at her. Her beautiful round eyes that I know so well have tears spilling down and matting down her butterfly eyelashes. And the look in her eyes. My stomach just knots up and my heart wants to burst and take that sadness away.
What is going through her mind? What is her internal dialogue saying? What is she thinking? I know I over think things. But, for instance, on Saturday... she cried and cried in the car ride on the way to visit family for Easter. And Vicki LOVES car rides. And it was so beautiful outside. And we were stopping at McDonald's, and she LOVES McDonald's. And she cried and cried and cried. And I had to look away. And soon my silent tears were wetting my cheeks as well. Wanna know why? Because in my head I wondered if she was crying because she misses my dad. My dad died a year and a half ago. And I miss him everyday. And I really miss him when we drive home to see our family. On Friday at school she had said the word 'Pappy' when they were talking about Easter break.
So, of course, I hypothesize that Vicki is crying because she misses Pappy. And she knows Pappy would hide Easter Eggs for her every year. And I wonder what she understands and what she thinks of. I have always felt that Vicki and my dad shared a very special connection. One that didn't need words. One that was just love. And Joey and Ally - they talk about missing Pappy a lot. I wonder what goes through Vicki's mind when she goes into my parents house and sees only Grandma? And Pappy is not there. So do I think that's part of why she cried a lot this weekend? Absolutely. But I will never really know. When Pappy died, we all went to the funeral home. Vicki looked at him and she touched his hand. Vicki said The Lord's Prayer over Pappy. Death is something no one really understands. And death is so hard to explain to children. And for Vicki I wonder what death means? I wonder if she thinks of Pappy? I wonder if she dreams of Pappy? I wonder what Vicki dreams, period? I had never really thought of that before. I wonder what she dreams about?
I'm sorry. I know I am all over the place tonight. It's almost 1 o'clock and I guess I was feeling a little blue. I guess I miss Pappy too. Hey that rhymed. :)
Thank you for listening. I'm a little rusty getting back into blogging... hang in there... hopefully it will get better. xoxo
So, now I have a little bit more time to play with! Well, technically today is "World Autism Day". Light it up blue for autism awareness. Are you ready for a little irony? Guess what my post is about today? Yup. Feeling Blue.
I've know autism for 11 years now. And when I think about it, it's odd... Usually the longer you know a person, the more you get to know them. The more you understand them. The more you 'get' them. It's just the opposite for me with autism. I feel like I know less about autism today than I did a few years ago. I feel like I understand less about autism that I did a few years ago. I feel like I don't 'get' autism at all. BUT... I do know my Vicki. Well. Kind of.
I know that she's 5'4" tall now. (1/4" taller than her momma!). I know that she has the most beautiful blue eyes I've ever looked into and when she makes eye contact with me, really makes eye contact, it give me goose bumps. Her lashes curl around her big round eyes and when I (rarely) get the pleasure of watching her sleep, they flutter on the top of her cheeks like little butterfly wings. I know that Vicki has the most beautiful curly hair I have ever seen. The curls just jump and skip and laugh right along with Vicki. I know that there is nothing sweeter than hearing Vicki hum a song and sing a few lines. I know that I have never seen another person enjoy life with as much zest and freshness and pureness as Vicki does. I could go on and on about what I know about Vicki. And I will for the next 29 days. :)
But today I wanted to talk to you about feeling blue. And this is something that has been killing me lately and tugging at the deepest parts of my being. There are so many things that I don't know about my sweet Vicki.
I am lucky that I know what Vicki's voice sounds like. So many parents don't have that luxury. There was nothing more melodic than hearing her say I love you the first time. Even if I fully prompted her to say it. She said it. And she does speak. And for that I am grateful. BUT... I think it's a hard spot to be in. Yes, Vicki has language. And she speaks. But she doesn't converse. Not really. She answers questions with rote responses. She demands things in one or two word phrases to get her basic needs met. Now, I am not making this any less amazing than it is. It has taken years and years and hours upon countless hours and so much hard work and determination for Vicki to gain the language skills she has. I don't take any of it for granted. And recently she has shown us a little bit more of what she has locked away in some deep recesses of her mind. And it is nothing short of amazing. I love discovering it. I love Vicki sharing it.
But what I am talking about here today is sadness. I know Vicki has been a teenager for a few years already... even if she is only 10 years old. Her body is way older than 10. And her mind is much younger. And I can't imagine how that feels. That's just it. I have no idea how that feels because Vicki can't tell me. And people keep telling me that it's normal for teenagers to be sad and to cry. I know. I was once one... many, many years ago. I know that, heck, even now, I don't know why I am sad sometimes. My husband will come home and just look at me and the tears will start rolling down my cheeks.... What's wrong? I don't know I snivel. Why are you crying? I have no idea. :) Right? We all go through that. And I am sure that Vicki goes through that as well. Maybe she is just going through all of the teenage hormones and stuff and she just cries. So, how is that any different, her crying and not saying anything? and me crying and telling my husband that I have no idea why I am crying?
It's different to me. Because it's different. Because sometimes I know exactly why I am crying. I have all these little thought fragments running around in my head. And eventually they spill out, not it tears, but in words. And that's why I am so sad sometimes. Because when Vicki cries. No words spill out. Just tears. And the anguished look in her eyes... speak volumes to me. She has never been able to tell my why she is crying. Sometimes I try to guess in my head. Maybe sometimes there are no reasons. But it's the times when I think there may be reasons.. and I don't know how to comfort her. Because I just don't know what to say. Because I just don't know.
And Vicki has been crying a lot lately. Like a lot. For example, I think she cried at least 15-20 different times between Saturday and Sunday this weekend. And sometimes when I look at her crying, it is so hard to look at her. Her beautiful round eyes that I know so well have tears spilling down and matting down her butterfly eyelashes. And the look in her eyes. My stomach just knots up and my heart wants to burst and take that sadness away.
What is going through her mind? What is her internal dialogue saying? What is she thinking? I know I over think things. But, for instance, on Saturday... she cried and cried in the car ride on the way to visit family for Easter. And Vicki LOVES car rides. And it was so beautiful outside. And we were stopping at McDonald's, and she LOVES McDonald's. And she cried and cried and cried. And I had to look away. And soon my silent tears were wetting my cheeks as well. Wanna know why? Because in my head I wondered if she was crying because she misses my dad. My dad died a year and a half ago. And I miss him everyday. And I really miss him when we drive home to see our family. On Friday at school she had said the word 'Pappy' when they were talking about Easter break.
So, of course, I hypothesize that Vicki is crying because she misses Pappy. And she knows Pappy would hide Easter Eggs for her every year. And I wonder what she understands and what she thinks of. I have always felt that Vicki and my dad shared a very special connection. One that didn't need words. One that was just love. And Joey and Ally - they talk about missing Pappy a lot. I wonder what goes through Vicki's mind when she goes into my parents house and sees only Grandma? And Pappy is not there. So do I think that's part of why she cried a lot this weekend? Absolutely. But I will never really know. When Pappy died, we all went to the funeral home. Vicki looked at him and she touched his hand. Vicki said The Lord's Prayer over Pappy. Death is something no one really understands. And death is so hard to explain to children. And for Vicki I wonder what death means? I wonder if she thinks of Pappy? I wonder if she dreams of Pappy? I wonder what Vicki dreams, period? I had never really thought of that before. I wonder what she dreams about?
I'm sorry. I know I am all over the place tonight. It's almost 1 o'clock and I guess I was feeling a little blue. I guess I miss Pappy too. Hey that rhymed. :)
Thank you for listening. I'm a little rusty getting back into blogging... hang in there... hopefully it will get better. xoxo
Monday, April 1, 2013
Day 1. Year 3.
Hi!!!! It's Aprilllll !!!!
I just want to say a quick ***Welcome Back*** to those of you who have read my blog in years past! I'm so glad you stopped back again this year to check in on Vicki and follow along with us for the next 30 days! And a quick *** Hi new reader!!! I'm so glad you stopped by to peruse my blog *** I hope you stay awhile! :) Just for a little back story and re-introduction.... My name is Rosezella and my daughter Vicki is 10 years old. I started this blog 2 years ago as a way to reach out to our family and friends. I used to write a little update every April and email it out to family and friends. I had hoped that by talking a little about Vicki and autism that it would help answer some unspoken questions people may have but don't really want to ask. I was hoping that I could do my part to educate, just a little, and just share my Vicki. Because in my eyes she's too amazing not to share with others. :) And then my yearly updates just got too long... I had too much I wanted to say and share. (I'm kind of a wordy person!) So I thought I would try my hand at blogging. And in the process I discovered a lot more about myself as a person, as a wife, as a mother, as a daughter, as a friend, and as a writer. So, I'm gonna do it again this year. This blog has become very therapeutic for me.
I hope that you find in this blog something that touches you personally. I hope you laugh a little bit, cry a little bit and I hope it makes you think a little bit. I try not to come off as preachy, or whiny, or anything else. I try to come off as myself. I want to give you a glimpse into 30 days. I try to be as honest as I can be. I don't pretend to know how to write. I just write. Someone recently told me that my writing style is 'stream-of-conciousness'. I like it! I have a style! It's not pretty, but it's me. If I took the time to try to edit it, I would never post a blog entry! ;) I tend to use a lot of smiley and winky faces in my blog and I like to use these little things .... :) I talk a lot about my husband and our other 2 children as well (Joey- 12, and Ally- 7).
So, that's about it for my intro. And because I want to get this posted on Day 1, I have 4 more minutes to do so.... So.... :) stay tuned for some meat and potatoes of my blog on Day 2, in about a half an hour from now. I'm so excited you are here!!!!! xoxo
Please send me a comment or two ever so often so I know someone else besides me reads this... and join this blog so you know when I write. I'm planning on a few new this this year. Ready. Set. Go!!!
I just want to say a quick ***Welcome Back*** to those of you who have read my blog in years past! I'm so glad you stopped back again this year to check in on Vicki and follow along with us for the next 30 days! And a quick *** Hi new reader!!! I'm so glad you stopped by to peruse my blog *** I hope you stay awhile! :) Just for a little back story and re-introduction.... My name is Rosezella and my daughter Vicki is 10 years old. I started this blog 2 years ago as a way to reach out to our family and friends. I used to write a little update every April and email it out to family and friends. I had hoped that by talking a little about Vicki and autism that it would help answer some unspoken questions people may have but don't really want to ask. I was hoping that I could do my part to educate, just a little, and just share my Vicki. Because in my eyes she's too amazing not to share with others. :) And then my yearly updates just got too long... I had too much I wanted to say and share. (I'm kind of a wordy person!) So I thought I would try my hand at blogging. And in the process I discovered a lot more about myself as a person, as a wife, as a mother, as a daughter, as a friend, and as a writer. So, I'm gonna do it again this year. This blog has become very therapeutic for me.
I hope that you find in this blog something that touches you personally. I hope you laugh a little bit, cry a little bit and I hope it makes you think a little bit. I try not to come off as preachy, or whiny, or anything else. I try to come off as myself. I want to give you a glimpse into 30 days. I try to be as honest as I can be. I don't pretend to know how to write. I just write. Someone recently told me that my writing style is 'stream-of-conciousness'. I like it! I have a style! It's not pretty, but it's me. If I took the time to try to edit it, I would never post a blog entry! ;) I tend to use a lot of smiley and winky faces in my blog and I like to use these little things .... :) I talk a lot about my husband and our other 2 children as well (Joey- 12, and Ally- 7).
So, that's about it for my intro. And because I want to get this posted on Day 1, I have 4 more minutes to do so.... So.... :) stay tuned for some meat and potatoes of my blog on Day 2, in about a half an hour from now. I'm so excited you are here!!!!! xoxo
Please send me a comment or two ever so often so I know someone else besides me reads this... and join this blog so you know when I write. I'm planning on a few new this this year. Ready. Set. Go!!!
Friday, February 1, 2013
Year 2. Plus 5.
Hi. :)
I feel bad. When I don't write for a while I get antsy. And I am really antsy. I haven't posted here since October. And today it was the last day of January. (Tomorrow is one of Vicki's and my 12 favorite days of the year. The first of the month! A new month! New calendar! New decorations... hello Valentines and hearts!) And new goals. A clean white page. To write on and decorate however we want. To fill it with fun times and fun memories. And, of course, always more doctors appointments and meetings.
First off, I want to thank all of you who read... and who follow our journey... and who love us and care about us and worry about us. I haven't been on facebook (or pinterest!) all year. (ok, it's only been a month since the beginning of this year... but wow... doesn't that sound like self-control!) I hadn't meant to pull away from everything and everyone. It wasn't a new year's resolution or anything... ;) So, to all of you who have sent messages and texts and notes, thank you so much for being concerned!!! I feel so loved! And I am SO sorry if I worried anybody! I didn't mean to! And, I also didn't realize how much I must usually post on facebook and then suddenly stopped. I have been having issues with my cell phone's memory and I disabled my facebook there, and that's where I usually get my updates from notes posted and stuff... and apparently, I don't get email notifications anymore... I must have changed my settings. Anyhow... I'm all fixed technologically now, I think... so, I'm back. For a short answer, we are doing good. Really good. For a long answer, read below. :)
So much has happened since I last updated you on Vicki. And I am happy to report. She's baaaack!!!!! It's been a very long journey. One that has given us the stereotypical one-step forward, two steps back cliche. This leg of the journey, the past 9 months, has been a very difficult one. But we made it. :) And we are back on track now. Thank you for your continued love and prayers!
The best way that I can describe how I've been feeling... back in August I think it was... we were driving home to visit family in PA and we were passing through Berkley Springs, WV.. And it was raining. Really hard. And I get a bit anxious in the rain. Heck, I get a bit anxious with a lot of things. We were driving through the streets of downtown Berkley Springs and the rain was coming down so hard and so fast. I had never been in a flash flood before. But, oh my goodness, I'm pretty sure that's what this was. We were inching along in the flooded streets in our van right behind a big truck. Thank goodness for that truck.... His big ol' tires were plowing through the water and scooping some water out from around us. I looked down a side street and there was a car floating down the road. Everywhere I looked there was water and the water was up to the tops of our tires, I don't know much about cars, but the water was high enough to mess with the hot stuff under the hood and the sounds coming from the van were not good. There wasn't a place to pull off, all of the parking lots were underwater. The stop signs in some places were barely sticking out of the water. I was silently freaking out. Well, I don't think I was actually silent about it...
So, that's how these last 9 months have felt to me, like we were in a flash flood. There was no place to go. We couldn't stop. We couldn't turn around. We just had to take it slow and keep plowing through. And that's what we did. It's safe to say that I've been a bit anxious these last 9 months, and silently and not so silently freaking out. But, as usual, my husband... drove us through that horrible rain in Berkley Springs that day... and he drove us through our 'flash flood' with Vicki too... He literally drove countless miles to doctors and specialists. Always calm and in control, just like he was that day driving in the flooded streets.
We didn't stop. We didn't turn around. We took it slow and we keep plowing through. And we keep praying. And you know what? Vicki's BACK!!!!! Now, I know it will rain again. And I know that we may have some more flash floods. But we are armed with our umbrellas and rain boots and we are ready. :)
I just wanted to share with you a few of the amazing things that have been going on. We are still seeing multiple specialists... So far we've seen 2 of Vicki's specialists in January. We have 3 more appointments in the next month and a half. Vicki is still on multiple medications for PANDAS. And in the next month or so, one of the doctors is going to start weaning her off one of the medications. Am I scared? Absolutely! But I have a lot of confidence in the team of doctors we have working with Vicki right now. And I have a lot of confidence in Vicki. Probably one of the best compliments we have gotten is from Vicki's pediatric neurologist. She is very scientific and very skeptical about alternative treatments. She has told us multiple times that she doesn't believe in PANDAS as a diagnosis. But, when we went to see her a few weeks ago with Vicki, she was amazed at the changes in our baby girl. Well, not so much baby girl anymore... at this visit, Vicki officially passed me up in height. :( She's now 5'4" and I am only 5' 3 and 3/4"..... sigh..... But, more to the point, our neurologist said, "I don't believe in PANDAS. But in Vicki's case I do." She went on to tell us that she's amazed with Vicki's recovery. The symptoms don't lie. And the lack of symptom's don't lie either. And I don't know exactly what medications did it, or how it happened, but .... Vicki's back. :)
And for that, we are forever grateful.
As an aside here, I am going to say something.... Vicki has autism and Vicki has seizures and Vicki has PANDAS. And, you know what makes me feel like a bad mom? I don't even know how to describe it. To see your child slip away from you so globally like Vicki did last spring and summer... to have so many facets of her being be compromised... to imagine what Vicki was going through... the anxiety, to be trapped in such tremendous OCD rituals... to lose who you are. It was horrible to watch. And then, finally, we started seeing improvements. Slow and steady improvements with the medications they put her on. And some of the symptoms started lessening. And Vicki was getting better. And still is making improvements. And I have to say, I am convinced that some of this medication.... I am convinced that besides releasing her from some of the frightening PANDAS symptoms she had, I am convinced it opened some windows for Vicki as well. I am sure that whatever has been happening has allowed things that we have been struggling with for years to find a way to come out. Vicki's reading is exploding. Vicki is starting to spell words. I've seen so much progress academically the past few months. I look at where she has been and where she is now and I am so proud of her I just sit down and cry. I feel like I've gotten a look into her mind that I've never seen before, glimpses of what she is capable of... and what she shocks and amazes me with. And yet, with all of this... I am still a little sad. And that's what makes me feel like a bad mom. To see someone you love who has autism... to see them.... I don't know. To see symptoms get better with medication. It was amazing. And now... Vicki is still on a roll, don't get me wrong. But it's almost as if, well... we are taking care of PANDAS... and she's getting better. But, damn, there's still autism. I don't want to 'fix' Vicki. Because she is not broken. At all. But it's just... now when I see things... now when we take a step forward and two steps back... it's just a little bit different. Because everyday there are still struggles. And there are still days when quite frankly things really suck. And then there are amazing days. And now, it's almost a little harder... because I saw how dramatically things improved for Vicki. And how medications and interventions helped bring Vicki back. And it was such a gratifying feeling. I felt like we were finally able to help Vicki. And now... I just want more.
Sorry for being side tracked... I really am grateful and I feel so blessed everyday. And I do celebrate every step forward, and even the step backs make me appreciate things more... I just want to run with Vicki now. You know? :)
So, here we are. We drove through that rain storm. And we came out with Vicki's rainbow. And I guess what I've been doing this past month or so... is just enjoying the colors of her rainbow. And just basking in the sun. I've also been trying to clean up a bit. Because man, after a storm like that hits... there is a lot of damage. So, we are repairing and regrouping and just breathing right now.
And, it feels really good.
I love you all. xoxo
I feel bad. When I don't write for a while I get antsy. And I am really antsy. I haven't posted here since October. And today it was the last day of January. (Tomorrow is one of Vicki's and my 12 favorite days of the year. The first of the month! A new month! New calendar! New decorations... hello Valentines and hearts!) And new goals. A clean white page. To write on and decorate however we want. To fill it with fun times and fun memories. And, of course, always more doctors appointments and meetings.
First off, I want to thank all of you who read... and who follow our journey... and who love us and care about us and worry about us. I haven't been on facebook (or pinterest!) all year. (ok, it's only been a month since the beginning of this year... but wow... doesn't that sound like self-control!) I hadn't meant to pull away from everything and everyone. It wasn't a new year's resolution or anything... ;) So, to all of you who have sent messages and texts and notes, thank you so much for being concerned!!! I feel so loved! And I am SO sorry if I worried anybody! I didn't mean to! And, I also didn't realize how much I must usually post on facebook and then suddenly stopped. I have been having issues with my cell phone's memory and I disabled my facebook there, and that's where I usually get my updates from notes posted and stuff... and apparently, I don't get email notifications anymore... I must have changed my settings. Anyhow... I'm all fixed technologically now, I think... so, I'm back. For a short answer, we are doing good. Really good. For a long answer, read below. :)
So much has happened since I last updated you on Vicki. And I am happy to report. She's baaaack!!!!! It's been a very long journey. One that has given us the stereotypical one-step forward, two steps back cliche. This leg of the journey, the past 9 months, has been a very difficult one. But we made it. :) And we are back on track now. Thank you for your continued love and prayers!
The best way that I can describe how I've been feeling... back in August I think it was... we were driving home to visit family in PA and we were passing through Berkley Springs, WV.. And it was raining. Really hard. And I get a bit anxious in the rain. Heck, I get a bit anxious with a lot of things. We were driving through the streets of downtown Berkley Springs and the rain was coming down so hard and so fast. I had never been in a flash flood before. But, oh my goodness, I'm pretty sure that's what this was. We were inching along in the flooded streets in our van right behind a big truck. Thank goodness for that truck.... His big ol' tires were plowing through the water and scooping some water out from around us. I looked down a side street and there was a car floating down the road. Everywhere I looked there was water and the water was up to the tops of our tires, I don't know much about cars, but the water was high enough to mess with the hot stuff under the hood and the sounds coming from the van were not good. There wasn't a place to pull off, all of the parking lots were underwater. The stop signs in some places were barely sticking out of the water. I was silently freaking out. Well, I don't think I was actually silent about it...
So, that's how these last 9 months have felt to me, like we were in a flash flood. There was no place to go. We couldn't stop. We couldn't turn around. We just had to take it slow and keep plowing through. And that's what we did. It's safe to say that I've been a bit anxious these last 9 months, and silently and not so silently freaking out. But, as usual, my husband... drove us through that horrible rain in Berkley Springs that day... and he drove us through our 'flash flood' with Vicki too... He literally drove countless miles to doctors and specialists. Always calm and in control, just like he was that day driving in the flooded streets.
We didn't stop. We didn't turn around. We took it slow and we keep plowing through. And we keep praying. And you know what? Vicki's BACK!!!!! Now, I know it will rain again. And I know that we may have some more flash floods. But we are armed with our umbrellas and rain boots and we are ready. :)
I just wanted to share with you a few of the amazing things that have been going on. We are still seeing multiple specialists... So far we've seen 2 of Vicki's specialists in January. We have 3 more appointments in the next month and a half. Vicki is still on multiple medications for PANDAS. And in the next month or so, one of the doctors is going to start weaning her off one of the medications. Am I scared? Absolutely! But I have a lot of confidence in the team of doctors we have working with Vicki right now. And I have a lot of confidence in Vicki. Probably one of the best compliments we have gotten is from Vicki's pediatric neurologist. She is very scientific and very skeptical about alternative treatments. She has told us multiple times that she doesn't believe in PANDAS as a diagnosis. But, when we went to see her a few weeks ago with Vicki, she was amazed at the changes in our baby girl. Well, not so much baby girl anymore... at this visit, Vicki officially passed me up in height. :( She's now 5'4" and I am only 5' 3 and 3/4"..... sigh..... But, more to the point, our neurologist said, "I don't believe in PANDAS. But in Vicki's case I do." She went on to tell us that she's amazed with Vicki's recovery. The symptoms don't lie. And the lack of symptom's don't lie either. And I don't know exactly what medications did it, or how it happened, but .... Vicki's back. :)
And for that, we are forever grateful.
As an aside here, I am going to say something.... Vicki has autism and Vicki has seizures and Vicki has PANDAS. And, you know what makes me feel like a bad mom? I don't even know how to describe it. To see your child slip away from you so globally like Vicki did last spring and summer... to have so many facets of her being be compromised... to imagine what Vicki was going through... the anxiety, to be trapped in such tremendous OCD rituals... to lose who you are. It was horrible to watch. And then, finally, we started seeing improvements. Slow and steady improvements with the medications they put her on. And some of the symptoms started lessening. And Vicki was getting better. And still is making improvements. And I have to say, I am convinced that some of this medication.... I am convinced that besides releasing her from some of the frightening PANDAS symptoms she had, I am convinced it opened some windows for Vicki as well. I am sure that whatever has been happening has allowed things that we have been struggling with for years to find a way to come out. Vicki's reading is exploding. Vicki is starting to spell words. I've seen so much progress academically the past few months. I look at where she has been and where she is now and I am so proud of her I just sit down and cry. I feel like I've gotten a look into her mind that I've never seen before, glimpses of what she is capable of... and what she shocks and amazes me with. And yet, with all of this... I am still a little sad. And that's what makes me feel like a bad mom. To see someone you love who has autism... to see them.... I don't know. To see symptoms get better with medication. It was amazing. And now... Vicki is still on a roll, don't get me wrong. But it's almost as if, well... we are taking care of PANDAS... and she's getting better. But, damn, there's still autism. I don't want to 'fix' Vicki. Because she is not broken. At all. But it's just... now when I see things... now when we take a step forward and two steps back... it's just a little bit different. Because everyday there are still struggles. And there are still days when quite frankly things really suck. And then there are amazing days. And now, it's almost a little harder... because I saw how dramatically things improved for Vicki. And how medications and interventions helped bring Vicki back. And it was such a gratifying feeling. I felt like we were finally able to help Vicki. And now... I just want more.
Sorry for being side tracked... I really am grateful and I feel so blessed everyday. And I do celebrate every step forward, and even the step backs make me appreciate things more... I just want to run with Vicki now. You know? :)
So, here we are. We drove through that rain storm. And we came out with Vicki's rainbow. And I guess what I've been doing this past month or so... is just enjoying the colors of her rainbow. And just basking in the sun. I've also been trying to clean up a bit. Because man, after a storm like that hits... there is a lot of damage. So, we are repairing and regrouping and just breathing right now.
And, it feels really good.
I love you all. xoxo
Tuesday, October 23, 2012
Year 2. Plus 4.
It's been a long 6 months. I've started writing quite a few times over the last couple of months and then I would just hit the delete button and go to bed. Sometimes it's hard enough just living it... writing about it is sometimes too overwhelming for me. And sometimes I just don't know what to say. Well, I still don't know what to say, but here I am anyway... Hey that rhymed. :)
I had to reread my last post just to see where I left off, where we were... And what I can say for certain is that we were there then and we are here now. And everyday in between has been a day that got us to this day. Everyday I learn. Everyday I am elated. Everyday I am frustrated. Everyday I am thankful for everyday. Because everyday is a gift.
I've been posting a little bit more on my facebook page lately. I've wanted to celebrate. I've wanted to share. And tonight... I thought I would tell you a little bit more about the last 6 months and some of the things Vicki and our whole family has been through and learned to get from there to here. And, quite frankly, the last 6 months have been overwhelming and sometimes writing for me helps me to sort stuff out too and really take a step back... see the challenges and the changes and the progress. And it makes me appreciate every day and every struggle and every victory even more.
Those that know me well, know that I like answers. I like to know 'why'. I don't like questions. Day 26. Year 2. That was the post where I wrote all about the onset of Vicki's new symptoms and behaviors. That was back in April. So many questions. So much confusion. Such drastic changes. As I reread a few of my posts from those days just now, I am sitting here with tears streaming down my face. Tears because I don't want to remember those days. Tears because I was so heartbroken. Tears because Vicki was not Vicki. And I didn't know why. All I had were questions. And the tears are flowing because I don't want to forget those days either. Tears because Vicki has come so far. Tears because I am so proud of her. And tears because, well, because I am a cry baby at heart. Do I have answers now? Do I know why? Yes and No. Will I ever fully understand what happened to Vicki? Probably not. Am I afraid that one day we will wake up and be there again? Absolutely. I am terrified. But I also know that if it happens again, we can make it. Vicki is strong. I am strong. My husband is strong. Joey is strong. Ally is strong. And our support system is strong. Amazingly strong. (Thank you!!!!! xoxoxoxoxoxo)
A little disclaimer here... the rest of this post may be very dry, or maybe it already is... and I am just wet because of my tears. Ha ha. I want you to know and I want to remember some of the things we have done to get from there to here. And I forget that all of you may not have read my recent facebook posts... Let me tell you quickly where 'here' is and this is based solely on my opinion. If I had to assess a percentage to the question, "Is Vicki back to baseline?" (And this would be Vicki's
pre-April baseline....) I would have to say that, on average, because Vicki is still very unpredictable, Vicki is about 85% back to Vicki. And I am ecstatic about that!! The biggest symptom that still persists is her OCD, although nowhere near as severe as it was, it still has a firm grip on Vicki and on me. Tonight I don't want to talk about behaviors. Tonight I just want to tell you about doctors and diagnoses and ongoing treatment. (I plan to post again soon to talk in more detail about behavior.)
Here is a list of the doctors that Vicki has seen since the onset of her new symptoms this past April:
Pediatric Neurologist.
Developmental Pediatrician.
Pediatric Neurologist follow-up.
Pediatric Ophthalmologist.
Pediatric Neurosurgeon.
Geneticist.
Developmental Pediatrician follow-up.
Pediatric Endocrinologist.
Pediatric Neurologist follow-up.
Pediatric Neurologist specializing in PANDAS.
Developmental Pediatrician follow-up.
Pediatric Neurologist specializing in PANDAS follow-up.
Neurodevelopmental Disabilities Evaluation.
And we still have 3 follow-ups and a new doctor yet to see to finish out this year.
It has not been a super fun process for Vicki, for myself and my husband, or for our 2 other children, Joey and Ally. Would we do it all again if we had to? In a heartbeat.
What else have we done?
2 day hospitalization. :(
Lots and lots of blood draws. :(
24 hour video monitored EEG
Sedated MRI
LDA shots
And lots more stuff....that I am too tired to list here at this moment.
So, why? Why such significant changes in our Vicki? In my non-doctor, mom's intuition kind of thinking.. .I think it was a "perfect storm" of many things clashing in Vicki's body at the same time. To try to separate it all out was something that no one single doctor or specialist could do. Was it neurological? Was it behavioral? Was it hormonal? Was it developmental?
I like answers. And I like things to make sense. And doctor after doctor after doctor we saw. And lots of things were ruled out. But nothing was ruled in. I would sigh in relief when a test came back normal and then turn around and cry because I wanted to find something. Eventually we did find something and I feel it has made all of the difference.
I don't know how many of you have heard the word PANDAS before? And not the cute big ol' bamboo eating bears kind... But the "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection" kind. I had vaguely heard this term being thrown around in discussion boards and sites related to autism. But I didn't know what it was. And I still really don't know what it is. But what I do know is that once Vicki had the diagnosis of PANDAS (of which Vicki had 7 out of 7 of the symptoms that are used to describe this disorder) and started receiving treatment, Vicki started to slowly come back to us. The more I read about PANDAS and the more I googled it, the more amazed I was.... when I read some of the symptoms, it was as if they had taken notes from my post on Day 26. Year 2. I didn't know what I was describing, all I knew is that Vicki was not Vicki and it broke my heart. And I found myself nodding in agreement with what was being written in some of the case studies I read.
Vicki is currently being treated for PANDAS. We've gone through an initial 10-day course of an antibiotic. She is on a daily dose of ibuprofen. She was then treated with a 5-day course of steroids and was put on a 3 x a day antibiotic. She's been on this antibiotic 3 x a day since the middle of July. Vicki will continue to be on this antibiotic 3 x a day at least through the end of this year. She also went through a month long steroid treatment and is on other medications not related to her PANDAS treatment as well.
So, there you have it in a nutshell. Or in a bamboo forest. The last 6 months. I have a lot more that I want to say about what Vicki and our whole family went through and continue to go through. But not tonight. I really just want to make sure I post this one tonight. And I'm not used to writing this late at night anymore. :) I don't think I am making any sense.
Just as an aside, I googled 'giant panda' as I was writing this post tonight. And I found this statement to be very interesting. The Giant Panda is a "highly specialized" animal with "unique adaptations" and is generally solitary. Hmmm.... I wonder if it was a coincidence that this disorder was named PANDAS and that a significant number of children who have autism develop PANDAS? Interesting.
Stay tuned for more PANDAS talk, more interesting things we found out the past 6 months, and lots and lots more of our happy, smiling, skipping, amazing Vicki.
I had to reread my last post just to see where I left off, where we were... And what I can say for certain is that we were there then and we are here now. And everyday in between has been a day that got us to this day. Everyday I learn. Everyday I am elated. Everyday I am frustrated. Everyday I am thankful for everyday. Because everyday is a gift.
I've been posting a little bit more on my facebook page lately. I've wanted to celebrate. I've wanted to share. And tonight... I thought I would tell you a little bit more about the last 6 months and some of the things Vicki and our whole family has been through and learned to get from there to here. And, quite frankly, the last 6 months have been overwhelming and sometimes writing for me helps me to sort stuff out too and really take a step back... see the challenges and the changes and the progress. And it makes me appreciate every day and every struggle and every victory even more.
Those that know me well, know that I like answers. I like to know 'why'. I don't like questions. Day 26. Year 2. That was the post where I wrote all about the onset of Vicki's new symptoms and behaviors. That was back in April. So many questions. So much confusion. Such drastic changes. As I reread a few of my posts from those days just now, I am sitting here with tears streaming down my face. Tears because I don't want to remember those days. Tears because I was so heartbroken. Tears because Vicki was not Vicki. And I didn't know why. All I had were questions. And the tears are flowing because I don't want to forget those days either. Tears because Vicki has come so far. Tears because I am so proud of her. And tears because, well, because I am a cry baby at heart. Do I have answers now? Do I know why? Yes and No. Will I ever fully understand what happened to Vicki? Probably not. Am I afraid that one day we will wake up and be there again? Absolutely. I am terrified. But I also know that if it happens again, we can make it. Vicki is strong. I am strong. My husband is strong. Joey is strong. Ally is strong. And our support system is strong. Amazingly strong. (Thank you!!!!! xoxoxoxoxoxo)
A little disclaimer here... the rest of this post may be very dry, or maybe it already is... and I am just wet because of my tears. Ha ha. I want you to know and I want to remember some of the things we have done to get from there to here. And I forget that all of you may not have read my recent facebook posts... Let me tell you quickly where 'here' is and this is based solely on my opinion. If I had to assess a percentage to the question, "Is Vicki back to baseline?" (And this would be Vicki's
pre-April baseline....) I would have to say that, on average, because Vicki is still very unpredictable, Vicki is about 85% back to Vicki. And I am ecstatic about that!! The biggest symptom that still persists is her OCD, although nowhere near as severe as it was, it still has a firm grip on Vicki and on me. Tonight I don't want to talk about behaviors. Tonight I just want to tell you about doctors and diagnoses and ongoing treatment. (I plan to post again soon to talk in more detail about behavior.)
Here is a list of the doctors that Vicki has seen since the onset of her new symptoms this past April:
Pediatric Neurologist.
Developmental Pediatrician.
Pediatric Neurologist follow-up.
Pediatric Ophthalmologist.
Pediatric Neurosurgeon.
Geneticist.
Developmental Pediatrician follow-up.
Pediatric Endocrinologist.
Pediatric Neurologist follow-up.
Pediatric Neurologist specializing in PANDAS.
Developmental Pediatrician follow-up.
Pediatric Neurologist specializing in PANDAS follow-up.
Neurodevelopmental Disabilities Evaluation.
And we still have 3 follow-ups and a new doctor yet to see to finish out this year.
It has not been a super fun process for Vicki, for myself and my husband, or for our 2 other children, Joey and Ally. Would we do it all again if we had to? In a heartbeat.
What else have we done?
2 day hospitalization. :(
Lots and lots of blood draws. :(
24 hour video monitored EEG
Sedated MRI
LDA shots
And lots more stuff....that I am too tired to list here at this moment.
So, why? Why such significant changes in our Vicki? In my non-doctor, mom's intuition kind of thinking.. .I think it was a "perfect storm" of many things clashing in Vicki's body at the same time. To try to separate it all out was something that no one single doctor or specialist could do. Was it neurological? Was it behavioral? Was it hormonal? Was it developmental?
I like answers. And I like things to make sense. And doctor after doctor after doctor we saw. And lots of things were ruled out. But nothing was ruled in. I would sigh in relief when a test came back normal and then turn around and cry because I wanted to find something. Eventually we did find something and I feel it has made all of the difference.
I don't know how many of you have heard the word PANDAS before? And not the cute big ol' bamboo eating bears kind... But the "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection" kind. I had vaguely heard this term being thrown around in discussion boards and sites related to autism. But I didn't know what it was. And I still really don't know what it is. But what I do know is that once Vicki had the diagnosis of PANDAS (of which Vicki had 7 out of 7 of the symptoms that are used to describe this disorder) and started receiving treatment, Vicki started to slowly come back to us. The more I read about PANDAS and the more I googled it, the more amazed I was.... when I read some of the symptoms, it was as if they had taken notes from my post on Day 26. Year 2. I didn't know what I was describing, all I knew is that Vicki was not Vicki and it broke my heart. And I found myself nodding in agreement with what was being written in some of the case studies I read.
Vicki is currently being treated for PANDAS. We've gone through an initial 10-day course of an antibiotic. She is on a daily dose of ibuprofen. She was then treated with a 5-day course of steroids and was put on a 3 x a day antibiotic. She's been on this antibiotic 3 x a day since the middle of July. Vicki will continue to be on this antibiotic 3 x a day at least through the end of this year. She also went through a month long steroid treatment and is on other medications not related to her PANDAS treatment as well.
So, there you have it in a nutshell. Or in a bamboo forest. The last 6 months. I have a lot more that I want to say about what Vicki and our whole family went through and continue to go through. But not tonight. I really just want to make sure I post this one tonight. And I'm not used to writing this late at night anymore. :) I don't think I am making any sense.
Just as an aside, I googled 'giant panda' as I was writing this post tonight. And I found this statement to be very interesting. The Giant Panda is a "highly specialized" animal with "unique adaptations" and is generally solitary. Hmmm.... I wonder if it was a coincidence that this disorder was named PANDAS and that a significant number of children who have autism develop PANDAS? Interesting.
Stay tuned for more PANDAS talk, more interesting things we found out the past 6 months, and lots and lots more of our happy, smiling, skipping, amazing Vicki.
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