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.
Tuesday, October 23, 2012
Friday, June 29, 2012
Year 2. Plus 3.
There are so many things I should be doing now instead of writing... sadly none of them include sleep right at this moment. But I can't seem to concentrate; and the keyboard has been calling. It's been quite a while since I wrote... I've been wanting to write an update and let you all know how Vicki's been doing. June. It was quite a month. Not necessarily a good one. Not necessarily a bad one. It's just been quite a month. But tonight I don't want to write about all of that. I will next time.... To sum it all up. Doctors, lots of them. Lots more to come. Answers, none. Not yet. Medicine, yes. Behaviors, oh my yes. Confusing, yes. Easier. Sometimes. Harder. Sometimes. Happy, yes. Sad, yes. Glimpses of Vicki. Absolutely! Supportive people. Oh yes! Couldn't survive without you. Prayers. Many. Thank you.
Now onto the reason I am writing tonight. Something happened today. And quite frankly I am still shaking a little bit. And not in a good way. Let me tell you what happened. With summer being here, Vicki's schedule has become very important to her again; it always is, but during the long days of summer Vicki really looks to her schedule to guide her through the ever changing days and routines, or lack thereof. Anyway, today part of her schedule said, 'potty, car, library, home.' And, trying to be positive about something today, Vicki has come a long way with the library. She is able to put her own library books in the return bin now and she is willing to let go of those cookbooks in lieu of new cookbooks. That used to be a huge issue. And now she does pretty well with it. As long as we get her some great new cookbooks with yummy looking pictures in them. :) She tells us how many new cookbooks she wants. And today she wanted 6. 6 new cookbooks. She was excited. She was able to transition through potty and car. And as all 3 of the kiddos are sitting in the van in our garage, yep, you guessed it.... I turned the key and 'tick, tick, tick, tick.' Seriously. Is the battery dead again? It wouldn't start. Now.... if you've read some of my recent posts, you may see a pattern with this. And you may ask yourself, why don't they take their van into the shop? Well, we did. Just last week. And the mechanics kept the van for 3 days and couldn't get it to drain and not start. And they couldn't find anything wrong at all. The battery was fine. Yet, here I sat today, with 3 excited kids in my van. And I got it to not start. :( Yay me. Now for Joey and Ally, this was merely a minor inconvenience. They got out of our red van and into Vicki's aide's silver car. The library was still going to happen. New books were still going to be gotten, we just traded cars, got into one that actually started when you turn the key. Cause and effect. You turn the key, you expect the effect to be that your car would start.
But for Vicki, this was not a minor inconvenience. It was a major catastrophe. We used her visual schedule. Told her the red van was broken. Again. First silver car, then library, then 6 new cookbooks. It all made sense. But not to Vicki. So after quite a while of trying many things to get Vicki out of our broken red van, we decided to let Joey and Ally go to the library with Vicki's aide. And I would stay with Vicki since she wouldn't get out of the van. We said goodbye. The silver car pulled away and went to the library. Sometimes there is no doubt in my mind that Vicki understands cause and effect. And Vicki knows exactly what is asked of her and what she will get in return if she complies. Not more than a minute after the silver car pulled away, Vicki jumped out of the red van and said library. Maybe I should have tried to call or text Vicki's aide and have her come back. But I didn't. That was the choice I made. I told Vicki no library.
And Vicki was mad. Really mad. I will spare you the details of how difficult the transition was back into our house. Vicki did go back into the living room and she sat on the couch with her schedule and her layse back cat. Yelling 'library' all the while. And then crying. And making me feel like shit. I thought it would take a while to calm her down and redirect her attention. But I wasn't ready for what she did. She sprang up from the couch, ran out to the door to the garage and opened it. (Our garage looks like an obstacle course right now... lots of things you have to wrangle around to get to the other side.) And she slide in between all of the obstacles with such ease. Like a downhill skier on a slalom course. Now I will tell you, Vicki is fast. Extremely fast. And unpredictable. And I know this. And I was not ready for this. And let me tell you something else. I am not fast. I am no slalom racer. I am only slightly faster than a turtle. My adrenalin was going strong. I caught up to Vicki right as she was opening the side garage door to run outside. She was screaming 'library, silver car'. And there is no doubt it my mind that if I hadn't caught her right there at the door, I would have had to activate Vicki's project lifesaver tracking device and see if it really did work. IF she would have gotten out that door, it's one of those things that you don't want to finish the sentence. At all. Because Vicki won't stop if you call her name. Vicki runs fast. Our road is a busy cut-through. She has no idea what traffic is. I know she doesn't know cause and effect of what could happen in that instance. Now these circumstances were not the same at all, but it took me back to when Vicki was 4 years old and the policeman brought her back in the police car with her ponytail bobbing after she got out of our house, and the very next day is when we got project lifesaver.
So, again, after getting Vicki back inside the house, you would think that I would be smarter. But no. Vicki is faster and smarter than I give her credit for. This time she threw the door open and tried another tactic. She pushed the garage door opener and the garage door started opening. I didn't even know Vicki knew the garage door opened that way. She's very observant. I should have known she knew. I was able to stop her before the garage door opened completely. And long story, well, long... I was able to calm her down and get her redirected. There were no more escape maneuvers today. But that doesn't mean that my heart isn't still racing, hours later. What if? What could have happened? I shouldn't have.... Why did I....
As parents I guess we can second guess our decisions all of the time. And if we could have moments back to redo differently.... I have found myself in so many new and different behavioral situations in the last 3 months. And I feel lost. But thank goodness Vicki is not lost, both figuratively and literally. Time and time again, though tough lessons for both me and Vicki to learn, I find myself learning so much more about Vicki's strength, again, both figuratively and literally, and mine. I am thankful for today, even though it scared the shit out of me. BeCAUSE I have Vicki, I am grateful. xoxo Thanks for listening! BeCAUSE now, I think I can go to sleep. xoxo
Now onto the reason I am writing tonight. Something happened today. And quite frankly I am still shaking a little bit. And not in a good way. Let me tell you what happened. With summer being here, Vicki's schedule has become very important to her again; it always is, but during the long days of summer Vicki really looks to her schedule to guide her through the ever changing days and routines, or lack thereof. Anyway, today part of her schedule said, 'potty, car, library, home.' And, trying to be positive about something today, Vicki has come a long way with the library. She is able to put her own library books in the return bin now and she is willing to let go of those cookbooks in lieu of new cookbooks. That used to be a huge issue. And now she does pretty well with it. As long as we get her some great new cookbooks with yummy looking pictures in them. :) She tells us how many new cookbooks she wants. And today she wanted 6. 6 new cookbooks. She was excited. She was able to transition through potty and car. And as all 3 of the kiddos are sitting in the van in our garage, yep, you guessed it.... I turned the key and 'tick, tick, tick, tick.' Seriously. Is the battery dead again? It wouldn't start. Now.... if you've read some of my recent posts, you may see a pattern with this. And you may ask yourself, why don't they take their van into the shop? Well, we did. Just last week. And the mechanics kept the van for 3 days and couldn't get it to drain and not start. And they couldn't find anything wrong at all. The battery was fine. Yet, here I sat today, with 3 excited kids in my van. And I got it to not start. :( Yay me. Now for Joey and Ally, this was merely a minor inconvenience. They got out of our red van and into Vicki's aide's silver car. The library was still going to happen. New books were still going to be gotten, we just traded cars, got into one that actually started when you turn the key. Cause and effect. You turn the key, you expect the effect to be that your car would start.
But for Vicki, this was not a minor inconvenience. It was a major catastrophe. We used her visual schedule. Told her the red van was broken. Again. First silver car, then library, then 6 new cookbooks. It all made sense. But not to Vicki. So after quite a while of trying many things to get Vicki out of our broken red van, we decided to let Joey and Ally go to the library with Vicki's aide. And I would stay with Vicki since she wouldn't get out of the van. We said goodbye. The silver car pulled away and went to the library. Sometimes there is no doubt in my mind that Vicki understands cause and effect. And Vicki knows exactly what is asked of her and what she will get in return if she complies. Not more than a minute after the silver car pulled away, Vicki jumped out of the red van and said library. Maybe I should have tried to call or text Vicki's aide and have her come back. But I didn't. That was the choice I made. I told Vicki no library.
And Vicki was mad. Really mad. I will spare you the details of how difficult the transition was back into our house. Vicki did go back into the living room and she sat on the couch with her schedule and her layse back cat. Yelling 'library' all the while. And then crying. And making me feel like shit. I thought it would take a while to calm her down and redirect her attention. But I wasn't ready for what she did. She sprang up from the couch, ran out to the door to the garage and opened it. (Our garage looks like an obstacle course right now... lots of things you have to wrangle around to get to the other side.) And she slide in between all of the obstacles with such ease. Like a downhill skier on a slalom course. Now I will tell you, Vicki is fast. Extremely fast. And unpredictable. And I know this. And I was not ready for this. And let me tell you something else. I am not fast. I am no slalom racer. I am only slightly faster than a turtle. My adrenalin was going strong. I caught up to Vicki right as she was opening the side garage door to run outside. She was screaming 'library, silver car'. And there is no doubt it my mind that if I hadn't caught her right there at the door, I would have had to activate Vicki's project lifesaver tracking device and see if it really did work. IF she would have gotten out that door, it's one of those things that you don't want to finish the sentence. At all. Because Vicki won't stop if you call her name. Vicki runs fast. Our road is a busy cut-through. She has no idea what traffic is. I know she doesn't know cause and effect of what could happen in that instance. Now these circumstances were not the same at all, but it took me back to when Vicki was 4 years old and the policeman brought her back in the police car with her ponytail bobbing after she got out of our house, and the very next day is when we got project lifesaver.
So, again, after getting Vicki back inside the house, you would think that I would be smarter. But no. Vicki is faster and smarter than I give her credit for. This time she threw the door open and tried another tactic. She pushed the garage door opener and the garage door started opening. I didn't even know Vicki knew the garage door opened that way. She's very observant. I should have known she knew. I was able to stop her before the garage door opened completely. And long story, well, long... I was able to calm her down and get her redirected. There were no more escape maneuvers today. But that doesn't mean that my heart isn't still racing, hours later. What if? What could have happened? I shouldn't have.... Why did I....
As parents I guess we can second guess our decisions all of the time. And if we could have moments back to redo differently.... I have found myself in so many new and different behavioral situations in the last 3 months. And I feel lost. But thank goodness Vicki is not lost, both figuratively and literally. Time and time again, though tough lessons for both me and Vicki to learn, I find myself learning so much more about Vicki's strength, again, both figuratively and literally, and mine. I am thankful for today, even though it scared the shit out of me. BeCAUSE I have Vicki, I am grateful. xoxo Thanks for listening! BeCAUSE now, I think I can go to sleep. xoxo
Wednesday, May 23, 2012
Year 2. Plus 2.
Of course I had to write again tonight. The greatest thing about writing is that for me, personally, it is free therapy. :) I wonder how many hours of 'therapy' I have logged so far? See baby, I AM frugal!
Gosh, I feel like all I have been saying lately is 'today was rough'. So I think I'll try something different today. And here it goes... 'Today was really rough.' :(
Bleh.
One of the harder aspects of all of the recent changes in Vicki, for me, is the unpredictability. Yes, kids are unpredictable. No one ever really knows when something is going to happen. And Vicki has always been unpredictable. But now, it scares me. It scares me to the point of not wanting to do anything at all, not wanting to go out at all, not wanting to try activities at all. Not wanting to do the things we usually do. Because I just don't know. I am used to seeing some sort of sign from Vicki, something that clued me into being a minute or so from a major meltdown. Or certain things that would set her off or make her nervous. We can all see little things in our kids faces, things no one else sees. But not now. I can't see them with Vicki right now.
I hate the fact that I dread just about every task right now. Because I don't know how she will react. Will she skip around and sing? Or will she sit frozen, scared and screaming?
5 hours. That's how long it took for me to get Vicki out of the van this am after we dropped Joey off at school (3.5 hours for that) and then 2.5 hours to get her upstairs, showered, dressed and back downstairs eating breakfast at 2 pm. Wait. My math skills need work. That's 6 hours. ;) But, you see, it's everything. I feel like I have tried everything. I feel like I am racking my brain to try everything and anything. And the really hard part is that I don't know what I am fighting against. I don't know what is going on inside of Vicki. I don't know the function of any of the behaviors that she is having. And I don't have answers. Or clues. But I do still have hope and faith.
When I have days like today, well, I've never had a day like today... But when I have days when there are significant challenges... I always think to myself, I never appreciate enough everything that usually goes so smoothly. Like getting out of the van, like going to the potty, like taking medicine, like me combing her hair, like getting her dressed, like taking her to school, like being able to pick up my kids from school, like her picking up a Capri sun and drinking it..... It all just happens. But today it didn't.
Vicki didn't get out of the van, go potty, take medicine, comb hair , get dressed, go to school, drink her Capri sun. Well, she did eventually get out of the van, go potty, take her medicine, I combed her hair, got her dressed and helped her drink her Capri sun. But she never did make it to school. And I never did get to pick my other kids up from school, stupid dead battery in the van. Really?!?! Too long opening and closing the van doors and lights today, I guess...
Everyday I'm baffling. Yep. That's my new word of the day. Come on... Everyday I'm baffling... du-ta-du-da-ta-du-da... I don't know what I would do if I couldn't laugh at myself.
But seriously... I keep saying that Vicki wants to do whatever task it is. She really does. I can see it in her face. And she answered my questions this morning. But she couldn't move out of the van. What is stopping her? She gets rigid, I can't pry her legs out of criss cross applesauce style. I ask her what she wants to do. She tells me, 'Take a shower.' But then she can't get out of the van. What the heck is holding her back? Now, I could, if I really had to... muscle up and let adrenalin take over and get her out of the van. But that wouldn't help anything and I don't want to put her or myself at risk for injury.
Do you want to know what finally got her out of the car? I tried everything I could think of for 3.5 hours. And this is what worked. We had done a sticker puzzle in the van together. She loves puzzles and stickers, so she liked the activity a lot. Anyway, there was garbage from the stickers. And I crinkled up the piece of paper and sat it on the floor of the van. Vicki said to me, 'Mommy. Trash.' And then I said, 'No. Vicki. Trash.' and pointed to the garbage can inside. And she kept saying to me, 'Mommy trash. (No, I'm not!!! ha ha....) Mommy go. Mommy trash. Mommy walking. Mommy black trash (the trash can is black). So, on a whim I tossed the trash onto the garage floor outside of the van. And I walked away. Well, that really bothered Vicki. A lot. And finally she jumped out of the van, picked up the trash, sprinted inside and threw it in the black trash can. Success!!!!!!!!!!!! I blocked the door to the garage and praised the heck out of her. And then of course it took another half an hour to get her upstairs. But. Still. Celebrate. Celebrate it all. Because it is soooo worth celebrating!
And then tonight before bed she was skipping around and smiling. And at bedtime she serenaded me with one of her favorite songs, Rocket Man.
And all this science I don't understand...
Oh, no no no. I'm a rocket man.
Now I think it's gonna be a long long time...
And i think it's gonna be a long long time...
If you could tonight... just send Vicki a little bit of love.
Here's to hope for a skipping and singing Vicki in the morning.
Thanks again for listening. xoxo
Oh, and I am open for suggestions! Anything! Anything at all! We are tossing around a lot of stuff right now, waiting, testing, searching... I will keep you posted.
Gosh, I feel like all I have been saying lately is 'today was rough'. So I think I'll try something different today. And here it goes... 'Today was really rough.' :(
Bleh.
One of the harder aspects of all of the recent changes in Vicki, for me, is the unpredictability. Yes, kids are unpredictable. No one ever really knows when something is going to happen. And Vicki has always been unpredictable. But now, it scares me. It scares me to the point of not wanting to do anything at all, not wanting to go out at all, not wanting to try activities at all. Not wanting to do the things we usually do. Because I just don't know. I am used to seeing some sort of sign from Vicki, something that clued me into being a minute or so from a major meltdown. Or certain things that would set her off or make her nervous. We can all see little things in our kids faces, things no one else sees. But not now. I can't see them with Vicki right now.
I hate the fact that I dread just about every task right now. Because I don't know how she will react. Will she skip around and sing? Or will she sit frozen, scared and screaming?
5 hours. That's how long it took for me to get Vicki out of the van this am after we dropped Joey off at school (3.5 hours for that) and then 2.5 hours to get her upstairs, showered, dressed and back downstairs eating breakfast at 2 pm. Wait. My math skills need work. That's 6 hours. ;) But, you see, it's everything. I feel like I have tried everything. I feel like I am racking my brain to try everything and anything. And the really hard part is that I don't know what I am fighting against. I don't know what is going on inside of Vicki. I don't know the function of any of the behaviors that she is having. And I don't have answers. Or clues. But I do still have hope and faith.
When I have days like today, well, I've never had a day like today... But when I have days when there are significant challenges... I always think to myself, I never appreciate enough everything that usually goes so smoothly. Like getting out of the van, like going to the potty, like taking medicine, like me combing her hair, like getting her dressed, like taking her to school, like being able to pick up my kids from school, like her picking up a Capri sun and drinking it..... It all just happens. But today it didn't.
Vicki didn't get out of the van, go potty, take medicine, comb hair , get dressed, go to school, drink her Capri sun. Well, she did eventually get out of the van, go potty, take her medicine, I combed her hair, got her dressed and helped her drink her Capri sun. But she never did make it to school. And I never did get to pick my other kids up from school, stupid dead battery in the van. Really?!?! Too long opening and closing the van doors and lights today, I guess...
Everyday I'm baffling. Yep. That's my new word of the day. Come on... Everyday I'm baffling... du-ta-du-da-ta-du-da... I don't know what I would do if I couldn't laugh at myself.
But seriously... I keep saying that Vicki wants to do whatever task it is. She really does. I can see it in her face. And she answered my questions this morning. But she couldn't move out of the van. What is stopping her? She gets rigid, I can't pry her legs out of criss cross applesauce style. I ask her what she wants to do. She tells me, 'Take a shower.' But then she can't get out of the van. What the heck is holding her back? Now, I could, if I really had to... muscle up and let adrenalin take over and get her out of the van. But that wouldn't help anything and I don't want to put her or myself at risk for injury.
Do you want to know what finally got her out of the car? I tried everything I could think of for 3.5 hours. And this is what worked. We had done a sticker puzzle in the van together. She loves puzzles and stickers, so she liked the activity a lot. Anyway, there was garbage from the stickers. And I crinkled up the piece of paper and sat it on the floor of the van. Vicki said to me, 'Mommy. Trash.' And then I said, 'No. Vicki. Trash.' and pointed to the garbage can inside. And she kept saying to me, 'Mommy trash. (No, I'm not!!! ha ha....) Mommy go. Mommy trash. Mommy walking. Mommy black trash (the trash can is black). So, on a whim I tossed the trash onto the garage floor outside of the van. And I walked away. Well, that really bothered Vicki. A lot. And finally she jumped out of the van, picked up the trash, sprinted inside and threw it in the black trash can. Success!!!!!!!!!!!! I blocked the door to the garage and praised the heck out of her. And then of course it took another half an hour to get her upstairs. But. Still. Celebrate. Celebrate it all. Because it is soooo worth celebrating!
And then tonight before bed she was skipping around and smiling. And at bedtime she serenaded me with one of her favorite songs, Rocket Man.
And all this science I don't understand...
Oh, no no no. I'm a rocket man.
Now I think it's gonna be a long long time...
And i think it's gonna be a long long time...
If you could tonight... just send Vicki a little bit of love.
Here's to hope for a skipping and singing Vicki in the morning.
Thanks again for listening. xoxo
Oh, and I am open for suggestions! Anything! Anything at all! We are tossing around a lot of stuff right now, waiting, testing, searching... I will keep you posted.
Tuesday, May 22, 2012
Year 2. Plus 1.
I can't believe it's been 21 days since I last wrote. So many times in the last few weeks I have wanted to sit down and write. And for 21 days, I didn't. I don't know what made me tonight. No, that's a lie. I know exactly why I am writing tonight. Because I need to. Because I really, really needed to.
It's been a rough May. :( Every day is so different. Every day I get more and more confused. Vicki's behaviors mystify me. Scare me. Leave me heartbroken and crying. Leave me helpless and afraid. All I know for sure is I really just don't know. And quite frankly, it sucks. I feel like we are hanging in some odd kind of limbo. Not sure how to proceed. No one seems to have any answers.
So, this is very off the wall. But does anyone watch House? Besides the fact that I think I have a massive crush on either Gregory House or Hugh Laurie. I'm not sure which one. But I've watched House forever. Well, for 8 seasons to be exact. And tonight was the series finale. When House first came on the air, we were just diving into the world of autism, just dangling our feet in the water. Wading through the initial testing. How appropriate that tonight House ends. And I feel like we are back there again, wading through testing, different kinds now, but testing just the same. And now we are drowning in the world of autism. I can remember thinking, wow... I wish I could take Vicki into see Dr. House. He would solve the puzzle. He would find the answers we were looking for. And it would probably be sarcoidosis. :) It seems like every episode of House had one of the doctors saying sarcoidosis. :) And here I am tonight, wishing more than ever that I could take Vicki in to see
Dr. House. But I'm not sure if he could even solve the puzzle of what's been going on the past 7 weeks.
Tonight I didn't post to talk about all the the different things and behaviors that have been playing out like an episode of House. Maybe I will another day. And I didn't post to talk about all of the doctors and tests and hospital stay she has gone through the last few weeks. (I am still waiting on results for some stuff anyway... I will do a post soon, hopefully, on that...) I didn't post to talk about Vicki's recent birthday. I didn't post to talk about everything Joey and Ally have been going through the last few weeks watching what has been going on with Vicki.
No. I posted because I was heartbroken tonight. And I know it's a stupid thing to be heartbroken about. But, I am. I cried and cried and cried. Today was Vicki's last day at therapeutic horseback riding. For now.
For those of you who read my blog last year, you remember how much I used to post about horseback riding? Vicki loves horseback riding. She loves the horse she rides, Tiger Lily. She loves the barn. She loves the cats and dogs and chickens there. She loves giving Tiger Lily carrots. She loves wearing her pretty green riding boots and black velvet riding helmet. She loves going on little trail rides with Tiger Lily. And oh my gosh, she loves it when Tiger Lily runs. The smile on her face when she is on that horse and it is trotting fast. It takes my breath away. Vicki lights up. She loves going horseback riding. She loves her Mondays. (and last year it was Wednesdays). When she sees that horse visual on her schedule, she gets so excited. She always asks for 'piggy tails, Pochontas' on horseback riding days. (2 side braids).
I guess it's only been 2 years that she's been riding. But it seems like forever. And today, I made the decision to stop. For right now. I am going to keep saying 'for right now'. Because in my heart I know she will ride again. In my heart I know she will. I know she loves it. And it killed me today. We went to the barn and she couldn't even ride Tiger Lily. But I know she wanted to. But, along with so many other facets of her life right now, Vicki just couldn't. There is something stopping her. I don't know what it is. She wants to do it. She can pick her feet up to step up on the step ladder. I can't even explain it. Whatever is going on with Vicki, it's so hard to explain. And it's heartbreaking to watch. There is a hesitation in everything she is doing. Something is getting in her way. Even with people helping her, she couldn't get on the horse right. And even though this horse is an amazing, well trained animal, it is no longer safe to have Vicki on the horse. Vicki is too unpredictable. And I don't want Vicki to hate it. It has always been a place where she would go to smile. And now there is anxiety. There is anxiety with everything. I don't want it to be a fight. But Vicki is fighting. There is a war. And it is going on within Vicki. That's the best way for me to explain it. She wanted to ride so badly. I could see it on her face. I could hear it in her cries the whole way home. I know it's been getting harder and harder, and I just needed to see it for myself today (usually one of Vicki's therapists take her). And Vicki couldn't ride. It was horrible watching her struggle so much. I hated that it took 3 of us to get her back to the van. I hated that she kept screaming horseback riding, yes, Tiger Lily. It was raining the whole way home. Even Mother Nature knew.
It isn't just horseback riding. It's everything. It's eating. It's walking. It's talking. It's eating. (I said it again, because for those who know Vicki well, know that she loves eating. She loves all things food.) And it is horrible to dread meals with her. But I do. She can't even bring her fork to her mouth without someone hand-over-handing her hand and the fork. And when I say she can't, she can... she has the capability, the motor skills to perform the task, but she can't. And I don't know what to do. She can't transition well. She needs someone to touch her. She needs me. And I need to help her. And I just need someone to help solve this new set of puzzles so we can get our Vicki back.
Sorry this post is so heavy. And thank you for listening. I really appreciate it. I will post again when I know something. Well, maybe I should re-phrase that. I may never post again if I only post when I know something. :) I will keep questioning, keep searching, keep hoping. And I will let you know if I can get an appointment with Dr. House. :)
Just because I find it so hard to end on such a sad note, I want to tell you something. Joey made my night tonight. He is a smart kid. He knows when mommy is hurting. And tonight as the kids were playing in the room after their dinner (of soup and shrimp poppers), my husband and I had a late dinner at the table... I slaved over it for hours... I cut open the bag and warmed up a bag meal. :) Don't knock those bag meals though... they are yummy... and tonight was steak and portabello mushrooms and pasta. With leftover focaccia bread. And Joey comes out and lights a candle for us. And asks if there is anything he can do for us. And my husband said, 'serenade us with Belle Notte, from Lady and the Tramp'. And he runs out of the room, I thought it was because we asked him to sing, but he had gone in the other room to you tube it and play it for us. :) So in the midst of everything, there was a moment.
Side by side
with you're loved one
you'll find enchantment here
the night will weave its magic spell
when the one you love is near
Oh, this is the night
and the heavens are right
on this lovely Belle Notte
And with that one little gesture, Joey reminded me what it's all about. :) And as long as we all have each other, it really is a lovely night. It's all about a series of moments. It will all be ok. And Vicki will get back to horseback riding. I know she will. She's just (to coin a Ross phrase from Friends), 'on a break'. xoxo
It's been a rough May. :( Every day is so different. Every day I get more and more confused. Vicki's behaviors mystify me. Scare me. Leave me heartbroken and crying. Leave me helpless and afraid. All I know for sure is I really just don't know. And quite frankly, it sucks. I feel like we are hanging in some odd kind of limbo. Not sure how to proceed. No one seems to have any answers.
So, this is very off the wall. But does anyone watch House? Besides the fact that I think I have a massive crush on either Gregory House or Hugh Laurie. I'm not sure which one. But I've watched House forever. Well, for 8 seasons to be exact. And tonight was the series finale. When House first came on the air, we were just diving into the world of autism, just dangling our feet in the water. Wading through the initial testing. How appropriate that tonight House ends. And I feel like we are back there again, wading through testing, different kinds now, but testing just the same. And now we are drowning in the world of autism. I can remember thinking, wow... I wish I could take Vicki into see Dr. House. He would solve the puzzle. He would find the answers we were looking for. And it would probably be sarcoidosis. :) It seems like every episode of House had one of the doctors saying sarcoidosis. :) And here I am tonight, wishing more than ever that I could take Vicki in to see
Dr. House. But I'm not sure if he could even solve the puzzle of what's been going on the past 7 weeks.
Tonight I didn't post to talk about all the the different things and behaviors that have been playing out like an episode of House. Maybe I will another day. And I didn't post to talk about all of the doctors and tests and hospital stay she has gone through the last few weeks. (I am still waiting on results for some stuff anyway... I will do a post soon, hopefully, on that...) I didn't post to talk about Vicki's recent birthday. I didn't post to talk about everything Joey and Ally have been going through the last few weeks watching what has been going on with Vicki.
No. I posted because I was heartbroken tonight. And I know it's a stupid thing to be heartbroken about. But, I am. I cried and cried and cried. Today was Vicki's last day at therapeutic horseback riding. For now.
For those of you who read my blog last year, you remember how much I used to post about horseback riding? Vicki loves horseback riding. She loves the horse she rides, Tiger Lily. She loves the barn. She loves the cats and dogs and chickens there. She loves giving Tiger Lily carrots. She loves wearing her pretty green riding boots and black velvet riding helmet. She loves going on little trail rides with Tiger Lily. And oh my gosh, she loves it when Tiger Lily runs. The smile on her face when she is on that horse and it is trotting fast. It takes my breath away. Vicki lights up. She loves going horseback riding. She loves her Mondays. (and last year it was Wednesdays). When she sees that horse visual on her schedule, she gets so excited. She always asks for 'piggy tails, Pochontas' on horseback riding days. (2 side braids).
I guess it's only been 2 years that she's been riding. But it seems like forever. And today, I made the decision to stop. For right now. I am going to keep saying 'for right now'. Because in my heart I know she will ride again. In my heart I know she will. I know she loves it. And it killed me today. We went to the barn and she couldn't even ride Tiger Lily. But I know she wanted to. But, along with so many other facets of her life right now, Vicki just couldn't. There is something stopping her. I don't know what it is. She wants to do it. She can pick her feet up to step up on the step ladder. I can't even explain it. Whatever is going on with Vicki, it's so hard to explain. And it's heartbreaking to watch. There is a hesitation in everything she is doing. Something is getting in her way. Even with people helping her, she couldn't get on the horse right. And even though this horse is an amazing, well trained animal, it is no longer safe to have Vicki on the horse. Vicki is too unpredictable. And I don't want Vicki to hate it. It has always been a place where she would go to smile. And now there is anxiety. There is anxiety with everything. I don't want it to be a fight. But Vicki is fighting. There is a war. And it is going on within Vicki. That's the best way for me to explain it. She wanted to ride so badly. I could see it on her face. I could hear it in her cries the whole way home. I know it's been getting harder and harder, and I just needed to see it for myself today (usually one of Vicki's therapists take her). And Vicki couldn't ride. It was horrible watching her struggle so much. I hated that it took 3 of us to get her back to the van. I hated that she kept screaming horseback riding, yes, Tiger Lily. It was raining the whole way home. Even Mother Nature knew.
It isn't just horseback riding. It's everything. It's eating. It's walking. It's talking. It's eating. (I said it again, because for those who know Vicki well, know that she loves eating. She loves all things food.) And it is horrible to dread meals with her. But I do. She can't even bring her fork to her mouth without someone hand-over-handing her hand and the fork. And when I say she can't, she can... she has the capability, the motor skills to perform the task, but she can't. And I don't know what to do. She can't transition well. She needs someone to touch her. She needs me. And I need to help her. And I just need someone to help solve this new set of puzzles so we can get our Vicki back.
Sorry this post is so heavy. And thank you for listening. I really appreciate it. I will post again when I know something. Well, maybe I should re-phrase that. I may never post again if I only post when I know something. :) I will keep questioning, keep searching, keep hoping. And I will let you know if I can get an appointment with Dr. House. :)
Just because I find it so hard to end on such a sad note, I want to tell you something. Joey made my night tonight. He is a smart kid. He knows when mommy is hurting. And tonight as the kids were playing in the room after their dinner (of soup and shrimp poppers), my husband and I had a late dinner at the table... I slaved over it for hours... I cut open the bag and warmed up a bag meal. :) Don't knock those bag meals though... they are yummy... and tonight was steak and portabello mushrooms and pasta. With leftover focaccia bread. And Joey comes out and lights a candle for us. And asks if there is anything he can do for us. And my husband said, 'serenade us with Belle Notte, from Lady and the Tramp'. And he runs out of the room, I thought it was because we asked him to sing, but he had gone in the other room to you tube it and play it for us. :) So in the midst of everything, there was a moment.
Side by side
with you're loved one
you'll find enchantment here
the night will weave its magic spell
when the one you love is near
Oh, this is the night
and the heavens are right
on this lovely Belle Notte
And with that one little gesture, Joey reminded me what it's all about. :) And as long as we all have each other, it really is a lovely night. It's all about a series of moments. It will all be ok. And Vicki will get back to horseback riding. I know she will. She's just (to coin a Ross phrase from Friends), 'on a break'. xoxo
Monday, April 30, 2012
Day 30. Year 2.
30 days.
720 hours.
43,200 minutes.
2,592,000 seconds.
2,592,000 seconds of our lives that I tried to share with you as honestly as I could. From my heart. This is our autism. This is our story. This is our life. It doesn't stop after the 30 days is up. It will go on and on and on. It with go up and down and up and down and hopefully up again. It will hold joy and pain, hey... sunshine and rain. Yeah. Joy Pump it up. Pump it up. and pain Keep it goin' keep it goin'. Like sunshine What else? What else? and rain. Come on, come on. Here we go.
Wow. Yep- Comin' right at 'cha! It's DJ rappin' Rose. :) Maybe that's what I'll do to fill up my time for the next 30 days. Or, maybe not. Now, don't lie... you want to go pull out your old cassette tape and turn that song up right now, don't you? Or is it just me? :P
And, tell me, did anyone else out there really want some Lucky Charms for breakfast this morning? I know I did.
I hope you have enjoyed reading. I know that I have really enjoyed writing. I started out on April 1st thinking my blog could possibly shed some light into the day to day struggles of one child, one family, with autism. I was hoping to help others learn, understand, and think about autism as we see it, not just as it is perceived. And in the process, I have helped myself to learn, understand, and think about autism in ways that I never had before. I have laughed and cried, been terrified and amazed. Time flew yet time crawled. I am sad to see these 30 days end, yet relieved too, because they have been some of the hardest days I've experienced.
Today was better. It really was. And tomorrow... tomorrow is limitless. And I am excited to see what tomorrow holds... We got a few of the tests and doctors scheduled and we will be wading through it all, holding onto each other for support. I will be writing updates periodically. So, please, please check back or 'follow' my blog. I have truly appreciated all of your support. I could not have made it through this month without it and without you. xoxo
And I thought if I put this out there, out here, on my blog, then maybe I will do it and follow thru... I started writing 2 different books a few years ago. I'm going to revisit them, I think. And really try. Because for me, writing is such a release. And I hope what I've written has touched something within each of you... just a little bit. That's all I want.
I thought I would leave you with a song... of course, right? My beautiful Vicki... she sang again tonight. It's been a while. Such sweet music to my ears... and she was singing a piece of a verse from this (kinda sums it all up, huh?).
I throw my hands up in the air sometimes
Saying A-YO!
Gotta let go!
I wanna celebrate and live my life
Saying A-YO!
Baby, let's go!
I'm gonna take it all like, I
I'm gonna be the last one standing,
I'm alone and all I
I'm gonna be the last one landing
'Cause I, I, I Believe it
And I, I, I
I just want it all, I just want it all
I'm gonna put my hands in the air
Hands in the air
Put your hands in the air!!!!!!
Put your hands in the air. Celebrate and live your life. Until next April my friends... *well, until I post an update anyway. Thanks for taking this journey with me. Love, Rosezella
720 hours.
43,200 minutes.
2,592,000 seconds.
2,592,000 seconds of our lives that I tried to share with you as honestly as I could. From my heart. This is our autism. This is our story. This is our life. It doesn't stop after the 30 days is up. It will go on and on and on. It with go up and down and up and down and hopefully up again. It will hold joy and pain, hey... sunshine and rain. Yeah. Joy Pump it up. Pump it up. and pain Keep it goin' keep it goin'. Like sunshine What else? What else? and rain. Come on, come on. Here we go.
Wow. Yep- Comin' right at 'cha! It's DJ rappin' Rose. :) Maybe that's what I'll do to fill up my time for the next 30 days. Or, maybe not. Now, don't lie... you want to go pull out your old cassette tape and turn that song up right now, don't you? Or is it just me? :P
And, tell me, did anyone else out there really want some Lucky Charms for breakfast this morning? I know I did.
I hope you have enjoyed reading. I know that I have really enjoyed writing. I started out on April 1st thinking my blog could possibly shed some light into the day to day struggles of one child, one family, with autism. I was hoping to help others learn, understand, and think about autism as we see it, not just as it is perceived. And in the process, I have helped myself to learn, understand, and think about autism in ways that I never had before. I have laughed and cried, been terrified and amazed. Time flew yet time crawled. I am sad to see these 30 days end, yet relieved too, because they have been some of the hardest days I've experienced.
Today was better. It really was. And tomorrow... tomorrow is limitless. And I am excited to see what tomorrow holds... We got a few of the tests and doctors scheduled and we will be wading through it all, holding onto each other for support. I will be writing updates periodically. So, please, please check back or 'follow' my blog. I have truly appreciated all of your support. I could not have made it through this month without it and without you. xoxo
And I thought if I put this out there, out here, on my blog, then maybe I will do it and follow thru... I started writing 2 different books a few years ago. I'm going to revisit them, I think. And really try. Because for me, writing is such a release. And I hope what I've written has touched something within each of you... just a little bit. That's all I want.
I thought I would leave you with a song... of course, right? My beautiful Vicki... she sang again tonight. It's been a while. Such sweet music to my ears... and she was singing a piece of a verse from this (kinda sums it all up, huh?).
I throw my hands up in the air sometimes
Saying A-YO!
Gotta let go!
I wanna celebrate and live my life
Saying A-YO!
Baby, let's go!
I'm gonna take it all like, I
I'm gonna be the last one standing,
I'm alone and all I
I'm gonna be the last one landing
'Cause I, I, I Believe it
And I, I, I
I just want it all, I just want it all
I'm gonna put my hands in the air
Hands in the air
Put your hands in the air!!!!!!
Put your hands in the air. Celebrate and live your life. Until next April my friends... *well, until I post an update anyway. Thanks for taking this journey with me. Love, Rosezella
Sunday, April 29, 2012
Day 29. Year 2.
I am FINALLY starting to feel better. It's crappy when you feel so crappy and sad. I really don't like it. I like glitter and unicorns and hearts and flowers. Oh and rainbows. I love rainbows. And sometimes when things aren't magically delicious, YOU have to make them magically delicious yourself. (Please, someone... get the Lucky Charms reference!) So I am trying. And not too bad of an effort today, I must say.
Breakfast. It's what's for dinner. How can anything bring you down after that? :) If something does, then you haven't experienced OUR breakfast for dinner. It's magically delicious! Chocolate chip pancakes with all the bells and whistles - you know, the spray redi-whip on top! Bacon. Bacon. Oh, and more bacon. Fried on the stove. :) I didn't say it was the healthiest of dinners... I only said it was magically delicious. We all needed a dinner like that tonight after this past week.
And we needed time as a family today. It was an amazingly beautiful spring Sunday here in VA... perfect for a Sunday drive (yes, we must be getting old... we love our Sunday drives!) and a mountain hike. We saw 4 deer, 3 big birds, 2 turtles (no, just kidding...no turtles, but I was feeling the song...) and a lizard that the kids wanted to take home. (That would be a big NO!) I would never have attempted a drive or a hike like this without my husband. We have not been very successful at Vicki's after school walks as of late. With all of the odd behaviors and refusals... the last thing I wanted to do was get stuck 2 miles into the woods with Vicki deciding to drop on the ground and not go any further. Thankfully, though, that didn't happen! She seemed ready for today too.
Let me tell you about some of my glitter moments today, some of my magically delicious rainbows... holding hands with my son in a beautiful mountain forest just listening to the silence. No screaming or yelling or fighting. Just our feet rustling through the leaves, and occasionally tripping over a rock or a root. :) .... giggling uncontrollably with Ally tonight at bedtime... for no particular reason. I think it was just to giggle. And giggling with your 7 year old who just lost her other front tooth and now has a toothless grin... it's the best. :) OK, and now a magically delicious moment with Vicki... just watching her plop down on a tree stump seat during our hike and laughing when Daddy opened up a carbonated water and it sprayed all over everyone. I saw moments of my Vicki today. My Vicki with the dancing eyes. My Vicki with the dazzling smile.
Maybe I am just adjusting to all of the recent (hopefully VERY temporary) changes. Maybe it's because I get to call and schedule all of the appointments tomorrow that the neurologist wanted us to have. Maybe it's because I have talked endlessly with our behaviorist and Vicki's teachers and Vicki's therapists and aides... and I feel a little more armed for battle against those dragons. And Vicki seemed a little better today. Yes, a lot of the same behaviors and yelling and crying and challenges were still there. But I felt a little stronger today, a little bit more confident. Just a little. But even just a little bit is good.
And when we were on our mountain hike today, I saw another family. A mom and dad and sister and brother. And the mom and dad were holding the young boy's hands. And he was struggling with something. And I could feel their pain. But I could also feel their hope. They were out there just like we were today, enjoying this day, this day the Lord made... and we were glad and rejoicing.
Everyone. Everyone has a story. I just read a story in the paper about a young boy who had autism, who was about a year older than my Vicki. Who got out of his house and wandered into an area of water. And God wanted him back. This is not my story to tell or to write. But this story made me think. It made me pray. It made me fearful. It made me grateful. Even though we are struggling with things right now, it will all be ok. I know it will. I have my beautiful Vicki. I kissed her goodnight tonight and she smiled at me. That's pretty magically delicious.
I couldn't believe it, you took my heart
I couldn't retrieve it, said to myself
What's it all about
Now I know there can be no doubt
You can do magic
You can have anything that you desire
I hope that your day is filled with the magic that you make of it. xoxo
Breakfast. It's what's for dinner. How can anything bring you down after that? :) If something does, then you haven't experienced OUR breakfast for dinner. It's magically delicious! Chocolate chip pancakes with all the bells and whistles - you know, the spray redi-whip on top! Bacon. Bacon. Oh, and more bacon. Fried on the stove. :) I didn't say it was the healthiest of dinners... I only said it was magically delicious. We all needed a dinner like that tonight after this past week.
And we needed time as a family today. It was an amazingly beautiful spring Sunday here in VA... perfect for a Sunday drive (yes, we must be getting old... we love our Sunday drives!) and a mountain hike. We saw 4 deer, 3 big birds, 2 turtles (no, just kidding...no turtles, but I was feeling the song...) and a lizard that the kids wanted to take home. (That would be a big NO!) I would never have attempted a drive or a hike like this without my husband. We have not been very successful at Vicki's after school walks as of late. With all of the odd behaviors and refusals... the last thing I wanted to do was get stuck 2 miles into the woods with Vicki deciding to drop on the ground and not go any further. Thankfully, though, that didn't happen! She seemed ready for today too.
Let me tell you about some of my glitter moments today, some of my magically delicious rainbows... holding hands with my son in a beautiful mountain forest just listening to the silence. No screaming or yelling or fighting. Just our feet rustling through the leaves, and occasionally tripping over a rock or a root. :) .... giggling uncontrollably with Ally tonight at bedtime... for no particular reason. I think it was just to giggle. And giggling with your 7 year old who just lost her other front tooth and now has a toothless grin... it's the best. :) OK, and now a magically delicious moment with Vicki... just watching her plop down on a tree stump seat during our hike and laughing when Daddy opened up a carbonated water and it sprayed all over everyone. I saw moments of my Vicki today. My Vicki with the dancing eyes. My Vicki with the dazzling smile.
Maybe I am just adjusting to all of the recent (hopefully VERY temporary) changes. Maybe it's because I get to call and schedule all of the appointments tomorrow that the neurologist wanted us to have. Maybe it's because I have talked endlessly with our behaviorist and Vicki's teachers and Vicki's therapists and aides... and I feel a little more armed for battle against those dragons. And Vicki seemed a little better today. Yes, a lot of the same behaviors and yelling and crying and challenges were still there. But I felt a little stronger today, a little bit more confident. Just a little. But even just a little bit is good.
And when we were on our mountain hike today, I saw another family. A mom and dad and sister and brother. And the mom and dad were holding the young boy's hands. And he was struggling with something. And I could feel their pain. But I could also feel their hope. They were out there just like we were today, enjoying this day, this day the Lord made... and we were glad and rejoicing.
Everyone. Everyone has a story. I just read a story in the paper about a young boy who had autism, who was about a year older than my Vicki. Who got out of his house and wandered into an area of water. And God wanted him back. This is not my story to tell or to write. But this story made me think. It made me pray. It made me fearful. It made me grateful. Even though we are struggling with things right now, it will all be ok. I know it will. I have my beautiful Vicki. I kissed her goodnight tonight and she smiled at me. That's pretty magically delicious.
I couldn't believe it, you took my heart
I couldn't retrieve it, said to myself
What's it all about
Now I know there can be no doubt
You can do magic
You can have anything that you desire
I hope that your day is filled with the magic that you make of it. xoxo
Day 28. Year 2.
Hush, little baby, don't say a word.
Papa's gonna buy you a mockingbird
Papa's gonna buy you a mockingbird
And if that mockingbird won't sing,
Papa's gonna buy you a diamond ring
Papa's gonna buy you a diamond ring
And if that diamond ring turns brass,
Papa's gonna buy you a looking glass
What made me think of this lullaby tonight? A few things really. First thing: Ally was being super sweet tonight. She may only be 7, but she knows when Mommy is struggling. And right before bed she gave me a little card and present she wrapped up for me. It was one of those stick on jewels that looks like a diamond. About 2 years ago my diamond from my wedding ring, prongs and all, must have gotten snagged on something, and totally pulled off my band. I was heartbroken over it and never did find it, and never did get it replaced. And Ally said that she thought having a new diamond to put in my ring would cheer me up and look pretty. :) Awww....
And second thing: with everything that's been going on with Vicki, I feel like we have reversed time, rewound the clock, and are experiencing her autism diagnosis all over again. And all I want to do is hold her and sing to her and stroke her hair. So many times in the last week or so I have found myself questioning my judgement and feeling insecure, not knowing what to do. Like I don't have 9 years of autism under my belt. It's not like we've never taken Vicki to doctors and gone through testing and looked into different treatment options. I've been going through her medical binders and history and results of previous testing. It's not like we haven't tried and continue to use many different therapies and techniques. It's not like I have never seen behaviors before and looked at the antecedent, the behavior and the consequence. It's not like I've never heard about positive reinforcement. It's not like we haven't used visuals, timers, first/then boards.... We have done all of that and more. And yet here I sit tonight with pages and pages of notes from recent weeks. I have more questions than answers and I have no idea what to do next. Yes, we have many different tests and procedures to schedule for Vicki in the upcoming weeks and months. But what do I do in the interim? How do we get through each day? Everything Vicki does seems different and I am baffled. I don't know if what I am doing is right. I don't know how to help her. I don't know what to say. I don't know how to act. And I am scared.
I am scared. I am scared because there are so many things that I can't explain. I am scared because I am afraid to be alone with Vicki. Because what if something happens and I can't get her to go from point A to point B? I am afraid I can't take care of my kids by myself. I feel like I need to many people right now. What if I can't get Vicki out of the van? What if I can't get her out of the bathtub? What if? What if? What if I go to Joey's soccer practice and she throws herself on the ground and I can't get her up?
One thing that I hope I have never done is isolate Vicki. Isolate Vicki from school activities, isolate Vicki from extracurricular activities, isolate Vicki from people. Because autism, in itself, is isolating enough. We've always done things as a family. Always. Vicki has always loved being out, going to new places, going out to dinner. And now. Now it's hard. And now I don't want to go out. I am afraid to go out. It's easier not to go out, not to try. Because what if? What if? Last week Vicki didn't go to dance class and I didn't take Vicki to a school board meeting where they were going to recognize her as a Special Olympic athlete. This morning Joey had a soccer game at one field and Ally had a soccer game at another field at the same time. And neither Mark nor I had enough in us to take Vicki. So we let her sleep in and had an aide come up to be at the house with her. Vicki was happy, she had Layse Black Cat, and she loves pulling the covers up over her head on a cold and gray morning, just like a teenager. But I hated myself for letting her. I hated myself for going to Ally's soccer game and enjoying myself. I hated how easy it was. I hated feeling relief. I hated leaving Vicki.
But I know Joey and Ally needed us today too. If I am having this much trouble, I can't imagine what the two of them must feel. They see Vicki struggling. They hear Vicki crying and crying and crying for hours. They know that something's wrong. And they are so wonderful and supportive of Vicki. We needed this morning. And we needed today as a family. We all played pictionary together this afternoon and laughed. We needed that. Vicki sat at the table with us too. Even though she lined up her rainbow play-d'oh and made a rainbow sundae over and over and over again. She was still there with us. And we all watched Pirates of the Caribbean tonight together. And when I asked Vicki what a pirate says, she said, 'Arggghhh...' And the kids laughed and smiled. And Vicki loved on her Layse Black Cat today. She wrapped it in a blanket, put a crown on it's head and gave it a bottle. I will celebrate that. Most definitely. I will celebrate.
And if that looking glass gets broke, hell yeah, I will buy her a billy goat. I will do whatever it takes.
xoxo
Saturday, April 28, 2012
Day 27. Year 2.
I am ready to go on a quest. I am ready to slay some dragons. I am ready to rescue my princess. But damn... today of all days, why did we have to lose Vicki's trusty steed, Layse Black Cat?
Today was the day. A new journey. A new start. It's time to find some answers. Now.
I am humbled by so many of you who have selflessly committed to going on this quest with us. Who have provided us with shields and weapons and shelter and hope. It means everything to us. When I just don't feel strong enough to continue, when the obstacles seem to halt our progress, you are there.
Vicki's neurology appointment. I put so much stock into it to help us begin to find some answers. And although I am not looking forward to this journey, I know it is necessary.
I was relieved to see that the neurologist didn't just dismiss us and think we were crazy. Vicki is tricky. (Hey... that rhymes!) And even the professionals are confused. There was definitely enough there to warrant a deeper look. And that's all I wanted. I knew that we wouldn't come out from Vicki's neurology appointment and magically find what we were looking for. There is no magic potion. I wish there were. But, there are lots and lots of tests in Vicki's future. :( Even though it will suck, even though it will be a difficult few weeks and months, I am looking forward to it. Well, kind of. So here we go. Let's get them scheduled. 24 hour EEG. Sedated MRI. Geneticist. Blood work. Labs. Psych/Neuro/Behavioral clinic. I am ready to help Vicki slay the dragons, one at a time.
I don't want to go into much detail on the dragons we faced today. I am emotionally drained. Today sucked. A lot. Vicki was actually pretty good during her neurology appointment (of course, right? when you want to see behaviors and stuff...!) But like I said, the neurologist got enough to move forward. But the rest of the day. I have been trying to video some things so I can show the doctors. And Vicki gave me plenty to video today. :( Hours and hours of crying. And all the while she was crying she was wailing, 'I'm so sorry. I'm so sorry. I'm so sorry.' I felt like my heart was being wrung out. I have had a knot in my stomach and a lump in my throat all day. Have you ever watched The Princess Bride? 'That is the sound of ultimate suffering'. That's what Vicki's cry sounded like to me today. It was everything. From putting her glasses on to eating her rice at dinner. From putting her shoes on to walking down the stairs. And then, of course, when the neurologist asked Vicki to walk for her, Vicki skipped down the hall to her daddy. Really Vicki?!?! I would appreciate it if you played along! :) It was just me and Vicki driving up to pick Daddy up from work today before the appointment. And I have to say, it was one of the hardest rides of my life. She just kept screaming. And crying. And saying, 'I'm so sorry.' And then at one point I looked back and the look on her face was so frightening. It was such a wild fear. I can't even describe it. And I never ever want to see it on her face again. I worry that I am not strong enough for this. But I know I have to be. For Vicki.
And then we have mine and Vicki's knight in shining armor. Our hero. Daddy. He drove back up to the neurologist's office tonight to look for Vicki's royal steed and loyal friend, Layse Black Cat. (It's amazing to me really... that Vicki has had Layse Black Cat for quite a while and twice within this last month we have almost lost her.) My head must not have been in the game today. Vicki had Layse in the doctor's office. And then when we got home, she didn't. And it is amazing how losing Layse sent me over the edge. I was teetering on it anyway. I blamed myself. I cried for Vicki. It's a stuffed animal. I know. I don't think I was really crying for Layse, but for all Layse represented. And for Vicki. So in rides our knight in shining armor who has rescued Layse, and in turn has rescued me, and has rescued Vicki. And I am forever grateful. For everything.
I really am grateful. After all of the crying and all of the yelling and all of the emotions today, at the end of the day it was just me and Vicki in her room. And she held up her hand to my hand, and she laced her fingers through mine. And she squeezed. And she held our hands together over her heart. And she looked at me. And even though it is bad now, I know we will slay those dragons together, overcome the obstacles, and find what we are looking for. Together.
Today was the day. A new journey. A new start. It's time to find some answers. Now.
I am humbled by so many of you who have selflessly committed to going on this quest with us. Who have provided us with shields and weapons and shelter and hope. It means everything to us. When I just don't feel strong enough to continue, when the obstacles seem to halt our progress, you are there.
Vicki's neurology appointment. I put so much stock into it to help us begin to find some answers. And although I am not looking forward to this journey, I know it is necessary.
I was relieved to see that the neurologist didn't just dismiss us and think we were crazy. Vicki is tricky. (Hey... that rhymes!) And even the professionals are confused. There was definitely enough there to warrant a deeper look. And that's all I wanted. I knew that we wouldn't come out from Vicki's neurology appointment and magically find what we were looking for. There is no magic potion. I wish there were. But, there are lots and lots of tests in Vicki's future. :( Even though it will suck, even though it will be a difficult few weeks and months, I am looking forward to it. Well, kind of. So here we go. Let's get them scheduled. 24 hour EEG. Sedated MRI. Geneticist. Blood work. Labs. Psych/Neuro/Behavioral clinic. I am ready to help Vicki slay the dragons, one at a time.
I don't want to go into much detail on the dragons we faced today. I am emotionally drained. Today sucked. A lot. Vicki was actually pretty good during her neurology appointment (of course, right? when you want to see behaviors and stuff...!) But like I said, the neurologist got enough to move forward. But the rest of the day. I have been trying to video some things so I can show the doctors. And Vicki gave me plenty to video today. :( Hours and hours of crying. And all the while she was crying she was wailing, 'I'm so sorry. I'm so sorry. I'm so sorry.' I felt like my heart was being wrung out. I have had a knot in my stomach and a lump in my throat all day. Have you ever watched The Princess Bride? 'That is the sound of ultimate suffering'. That's what Vicki's cry sounded like to me today. It was everything. From putting her glasses on to eating her rice at dinner. From putting her shoes on to walking down the stairs. And then, of course, when the neurologist asked Vicki to walk for her, Vicki skipped down the hall to her daddy. Really Vicki?!?! I would appreciate it if you played along! :) It was just me and Vicki driving up to pick Daddy up from work today before the appointment. And I have to say, it was one of the hardest rides of my life. She just kept screaming. And crying. And saying, 'I'm so sorry.' And then at one point I looked back and the look on her face was so frightening. It was such a wild fear. I can't even describe it. And I never ever want to see it on her face again. I worry that I am not strong enough for this. But I know I have to be. For Vicki.
And then we have mine and Vicki's knight in shining armor. Our hero. Daddy. He drove back up to the neurologist's office tonight to look for Vicki's royal steed and loyal friend, Layse Black Cat. (It's amazing to me really... that Vicki has had Layse Black Cat for quite a while and twice within this last month we have almost lost her.) My head must not have been in the game today. Vicki had Layse in the doctor's office. And then when we got home, she didn't. And it is amazing how losing Layse sent me over the edge. I was teetering on it anyway. I blamed myself. I cried for Vicki. It's a stuffed animal. I know. I don't think I was really crying for Layse, but for all Layse represented. And for Vicki. So in rides our knight in shining armor who has rescued Layse, and in turn has rescued me, and has rescued Vicki. And I am forever grateful. For everything.
I really am grateful. After all of the crying and all of the yelling and all of the emotions today, at the end of the day it was just me and Vicki in her room. And she held up her hand to my hand, and she laced her fingers through mine. And she squeezed. And she held our hands together over her heart. And she looked at me. And even though it is bad now, I know we will slay those dragons together, overcome the obstacles, and find what we are looking for. Together.
Thursday, April 26, 2012
Day 26. Year 2.
Broken.
I feel like such a broken record. I feel so broken. How can I feel whole when a child of mine is suffering? I feel like I can't do it all. Be there for everyone. Be enough for everyone. Do enough for everyone. Autism can be all-consuming. I can feel it eating away at Vicki, at me, at Joey and Ally, at my husband. And I just want it to stop. Time-out. Please.
The way Vicki hugged me tonight. So tight. Like she didn't want to let go. Like she needed me. Like she was afraid. One of the girls that works with Vicki and has seen the changes in her over the past few weeks... she texted me tonight after she saw Vicki embrace me and hold her hand and she said it best, 'I can just feel her fear and confusion'. And it is terrifying to me. And I just want to crawl inside Vicki's brain, find the circuits that are not connected or are misfiring and fix them. If it's broken, then you fix it. That's just what you do. Of course I would love for there to be a cure for autism in mine and Vicki's lifetime. I am not saying that Vicki is broken because of autism. Not at all. But I am saying that Vicki is not Vicki right now. And that's what I want back. I want to help her find herself again and help her through all of her fear and changes that are occurring. I know I am putting way too much stock into her neurology appointment tomorrow. But, I need to believe something can be found to help this sweet child of mine. And when I look into Vicki's eyes, I can see that she wants it too. I can't describe it any other way.
And quite honestly, I've been talking about it all and thinking about it all so much today. Coming up with lists of things that I want to tell the doctor, in case something I say means something. Talking Vicki through hours of tasks that she could do independently just a few weeks. I don't think I have anything more to say tonight that can make any sense. So I am going to do 2 things to finish this post out tonight. Give you a little glimpse at a little section of my 'list' for the doctor and let some songs lyrics say what I want to say tonight....
o Like she is frozen until you give her the prompt
I walk a lonely road
The only one that I have ever known
Don't know where it goes
I feel like such a broken record. I feel so broken. How can I feel whole when a child of mine is suffering? I feel like I can't do it all. Be there for everyone. Be enough for everyone. Do enough for everyone. Autism can be all-consuming. I can feel it eating away at Vicki, at me, at Joey and Ally, at my husband. And I just want it to stop. Time-out. Please.
The way Vicki hugged me tonight. So tight. Like she didn't want to let go. Like she needed me. Like she was afraid. One of the girls that works with Vicki and has seen the changes in her over the past few weeks... she texted me tonight after she saw Vicki embrace me and hold her hand and she said it best, 'I can just feel her fear and confusion'. And it is terrifying to me. And I just want to crawl inside Vicki's brain, find the circuits that are not connected or are misfiring and fix them. If it's broken, then you fix it. That's just what you do. Of course I would love for there to be a cure for autism in mine and Vicki's lifetime. I am not saying that Vicki is broken because of autism. Not at all. But I am saying that Vicki is not Vicki right now. And that's what I want back. I want to help her find herself again and help her through all of her fear and changes that are occurring. I know I am putting way too much stock into her neurology appointment tomorrow. But, I need to believe something can be found to help this sweet child of mine. And when I look into Vicki's eyes, I can see that she wants it too. I can't describe it any other way.
And quite honestly, I've been talking about it all and thinking about it all so much today. Coming up with lists of things that I want to tell the doctor, in case something I say means something. Talking Vicki through hours of tasks that she could do independently just a few weeks. I don't think I have anything more to say tonight that can make any sense. So I am going to do 2 things to finish this post out tonight. Give you a little glimpse at a little section of my 'list' for the doctor and let some songs lyrics say what I want to say tonight....
Vicki’s Behavioral Changes since the beginning of April 2012:
Behavioral? Developmental? Hormonal? Neurological?
Echolalia
o Significant increase
o Before: she would echo back directly after you spoke to her what you said to her, whole phrases, made sense.
o Now: she echoes things at odd times, other people’s conversations not directed at her, picking out words, yelling them, the vocal intensity … sometimes what she yells is difficult to understand completely.
Gait
o Slow, choppy, two steps forward one step back, foot stutter, hesitation, needs encouragement
o Takes a few steps, stands and backs up into you, needs sensory physical reinforcement to keep going
Recall
o Words and pictures she normally recalls quickly she is struggling to remember
Word production
o Sometimes a word is very garbled with multiple fragments that don’t make sense
o Forgetting labels of common objects
o Slower… drawing syllables out, ‘I wannnnntttt ittttt… yeahhhhhh…. .yeahhhh..’
Confusion
o Looks confused, like her brain is working but language is not
o Can’t make connections, is lost in herself*
o Has a different look on her face like she is confused and doesn’t understand why she can’t verbalize
Yellingo Increased significantly over past couple months, lots of “YAAAAAA”
o Almost seems uncontrollable, reflexive
o Odd utterances
Crying
o Bizarre times, no apparent reason, real tears
o Sounds more like a baby
Level of Prompting
o Needs almost constant prompting for every little tasko Like she is frozen until you give her the prompt
*Mouthing objects a LOT, tried to shove things down throat (lollipop stick, laminated paper)
*Odd spatial awareness, grasping for things that aren’t there
*VERY unpredictable, not able to anticipate the changes in her behavior, they escalate and de-escalate very quicklyà what we used to be able to anticipate being a problem isn’t and random things become issues
*Some things seem very infantile-wanting to be picked up, crying like a baby, talking like a baby
*Odd spatial awareness, grasping for things that aren’t there
*VERY unpredictable, not able to anticipate the changes in her behavior, they escalate and de-escalate very quicklyà what we used to be able to anticipate being a problem isn’t and random things become issues
*Some things seem very infantile-wanting to be picked up, crying like a baby, talking like a baby
Words to describe: bizarre, erratic, uncontrollable, unpredictable-Not Vicki. Intense, lost, different, lacking something and she knows it, disconnect.
You get the picture. Right? I'm sorry tonight's post seems so... blah. But I feel blah. Oh, and speaking of feeling blah, Vicki got her period today. She's still not on a very accurate schedule. Luckily though, and you need phrases like that... Luckily... she seemed pretty good with it today, all things considered. :)
Anyway. I said I was going to leave you with some words from songs that are touching me right now. Here they are. Starting off with a little bit of Guns N'Roses...
She's got eyes of the bluest skies
As if they thought of rain
I hate to look into those eyes
And see an ounce of pain
Oh, oh, oh, oh
Sweet child o' mine
Oh,
Sweet love of mine
Where do we go?
Where do we go now?
Where do we go?
Oh, oh
Where do we go?
Oh,
Where do we go now?
Moving into a little bit of Green Day....As if they thought of rain
I hate to look into those eyes
And see an ounce of pain
Oh, oh, oh, oh
Sweet child o' mine
Oh,
Sweet love of mine
Where do we go?
Where do we go now?
Where do we go?
Oh, oh
Where do we go?
Oh,
Where do we go now?
I walk a lonely road
The only one that I have ever known
Don't know where it goes
I walk alone
I walk alone
I walk alone
I walk alone
I walk alone
And now for a little bit of hope for tomorrow, a new day....
Morning has broken, like the first morning.
Blackbirds have spoken, like the first day.
Praise for the singing, Praise for the morning,
Praise for them springing, Fresh from the Word.
Wednesday, April 25, 2012
Day 25. Year 2.
If you could just say a little prayer for Vicki, I would appreciate it. She is struggling. So much. And it is heartbreaking to watch. I've been kind of a mess all day, well, heck, all month. I feel so helpless. I feel so confused. I feel so much pain for my beautiful little girl.
But what's the point in lamenting in it if I don't do anything about it, so I have been plugging away at my to-do list. I was fortunate to be able to get Vicki an appointment with her neurologist for this Friday. At least that's something. I've been talking and emailing, and calling, and thinking, and crying, and .... all day long. So maybe... maybe on Friday... you have to start somewhere. And I think the neurologist is the most logical place to start.
Today was horrible for Vicki. It is so hard for me to describe. It's like I can see physically the internal struggle that Vicki is waging against herself. And one of the hardest things is to watch Vicki get lost in it. I just want my little girl back. The happy little girl with eyes that sparkle and a voice that sings and an energy so contagious that makes me want to burst with happiness when I am with her. To watch her struggle with absolutely everything. Everything. Getting out of bed, walking down the stairs, getting into and out of the car, sitting on the potty, taking a bath, getting out of the bath, putting on her shoes, walking into her classroom, transitioning with anything, eating, working, playing. Oh there are glimpses. And there are times where she is Vicki. But there is no question in my mind that there is something medically going on. And dammit, I am going to fix it. It's odd to want it to be medical, to want it to be neurological, to want an explanation for this. Because I have to believe that everything she is going through is not strictly behavioral. So many things are affected so globally, I don't think Vicki can manipulate it all at the same time. The yelling, the really odd echolalia, the motor planning, it can't all be Vicki acting out and trying to control her environment. Because if it is, I really don't know what to do. Trying to figure out some of her behaviors has been exhausting. It took over 20 minutes for her to get out the car this morning after we dropped Joey off at school. It took prompting and prompting, physical, verbal, everything. Every piece of getting ready was a struggle. And quite frankly, I don't know how so many people do it. Day in and day out. You know those people who always seem to be 'on', always seem so energetic, so reinforcing. All I think sometimes is, please not now. Please don't do this. I beg her and plead with her in my mind, I will her with everything I have to just put one foot in front of the other, to just bend her knee and put on her pants, to just keep going.
It took Vicki over an hour to walk from our van into her classroom this morning. I could continue to list the times for you for how long it took Vicki to do things today, and try to describe in greater detail little things I see, but after talking about it and writing about it all day, I think I'm done. Now there are glimpses of Vicki, she did ask to go potty, got excited when I asked her if she wanted corn dogs and mac and cheese for dinner and asked Joey for 'Dancing in the Moonlight' on his MP3 player. But there is so much that is not Vicki. Sigh. I feel like the balloons I tossed today from Ally's party on Sunday. Deflated. :(
That's enough of a pity party tonight. Done. Over. Tomorrow is a new day and then the next day we go to the neurologist. Cross your fingers.
I can't end tonight on this. It's too depressing. Let me tell you about a few amazing things. Friends. Friends are amazing. Really. Truly. Amazing. Teachers. Teachers are amazing. Really. Truly. Amazing. My mom is amazing. Really. Truly. Amazing. Joey is amazing. Really. Truly. Amazing. Ally is amazing. Really. Truly. Amazing. My husband is amazing. Really. Truly. Amazing. And Vicki. Vicki is amazing. Really. Truly. Amazing.
Words of encouragement, words of wisdom, acts of kindness, lending a hand. I hate asking for a hand. But when one reaches out to me, it feels amazing. My friend helped me out getting Ally to soccer practice tonight because Vicki was having such a hard time. And we were talking a little bit. She was telling me some of the things she has told her kids about Vicki and about autism. I've always noticed that her kids, anytime they see Vicki, will stop and say hi to her, 'Hi Vicki' and wave at her. And Vicki (although sometimes has to be prompted) always says hi back and waves. That means the world to me. Again, it's the little things.
Joey wanted me to go on his field trip this Friday (I was shocked, because he IS a 6th grade boy!) and while we were talking and waiting for Vicki to come out to the van after school, I told him that we had to take Vicki to the neurologist this Friday. And without missing a beat, he said, 'I understand mom. Don't worry about it. I want Vicki to get back to normal.' And I thought that his choice of words was so cool. Vicki getting back to normal. Vicki getting back to Vicki. He knows. He understands. He gets it better that I do. It makes my heart want to burst.
was for Vicki to get out of the van when we got home...) , 'Look at my prinsss book soon but she must be karfl with it.' Her new princess book she got from a friend at her birthday party. She was ready to give it to Vicki and share. And she did. She knows Vicki really really likes it. She knows. She understands. She gets it better than I do. It makes my heart want to burst.
And for my Vicki. My heart is singing for and to you tonight:
I'll be there for you
These five words I swear to you
When you breathe I want to be the air for you
I'll be there for you
I'd live and I'd die for you
Steal the sun from the sky for you
Words can't say what a love can do
I'll be there for you
And thank you all for being there for me. xoxo
But what's the point in lamenting in it if I don't do anything about it, so I have been plugging away at my to-do list. I was fortunate to be able to get Vicki an appointment with her neurologist for this Friday. At least that's something. I've been talking and emailing, and calling, and thinking, and crying, and .... all day long. So maybe... maybe on Friday... you have to start somewhere. And I think the neurologist is the most logical place to start.
Today was horrible for Vicki. It is so hard for me to describe. It's like I can see physically the internal struggle that Vicki is waging against herself. And one of the hardest things is to watch Vicki get lost in it. I just want my little girl back. The happy little girl with eyes that sparkle and a voice that sings and an energy so contagious that makes me want to burst with happiness when I am with her. To watch her struggle with absolutely everything. Everything. Getting out of bed, walking down the stairs, getting into and out of the car, sitting on the potty, taking a bath, getting out of the bath, putting on her shoes, walking into her classroom, transitioning with anything, eating, working, playing. Oh there are glimpses. And there are times where she is Vicki. But there is no question in my mind that there is something medically going on. And dammit, I am going to fix it. It's odd to want it to be medical, to want it to be neurological, to want an explanation for this. Because I have to believe that everything she is going through is not strictly behavioral. So many things are affected so globally, I don't think Vicki can manipulate it all at the same time. The yelling, the really odd echolalia, the motor planning, it can't all be Vicki acting out and trying to control her environment. Because if it is, I really don't know what to do. Trying to figure out some of her behaviors has been exhausting. It took over 20 minutes for her to get out the car this morning after we dropped Joey off at school. It took prompting and prompting, physical, verbal, everything. Every piece of getting ready was a struggle. And quite frankly, I don't know how so many people do it. Day in and day out. You know those people who always seem to be 'on', always seem so energetic, so reinforcing. All I think sometimes is, please not now. Please don't do this. I beg her and plead with her in my mind, I will her with everything I have to just put one foot in front of the other, to just bend her knee and put on her pants, to just keep going.
It took Vicki over an hour to walk from our van into her classroom this morning. I could continue to list the times for you for how long it took Vicki to do things today, and try to describe in greater detail little things I see, but after talking about it and writing about it all day, I think I'm done. Now there are glimpses of Vicki, she did ask to go potty, got excited when I asked her if she wanted corn dogs and mac and cheese for dinner and asked Joey for 'Dancing in the Moonlight' on his MP3 player. But there is so much that is not Vicki. Sigh. I feel like the balloons I tossed today from Ally's party on Sunday. Deflated. :(
That's enough of a pity party tonight. Done. Over. Tomorrow is a new day and then the next day we go to the neurologist. Cross your fingers.
I can't end tonight on this. It's too depressing. Let me tell you about a few amazing things. Friends. Friends are amazing. Really. Truly. Amazing. Teachers. Teachers are amazing. Really. Truly. Amazing. My mom is amazing. Really. Truly. Amazing. Joey is amazing. Really. Truly. Amazing. Ally is amazing. Really. Truly. Amazing. My husband is amazing. Really. Truly. Amazing. And Vicki. Vicki is amazing. Really. Truly. Amazing.
Words of encouragement, words of wisdom, acts of kindness, lending a hand. I hate asking for a hand. But when one reaches out to me, it feels amazing. My friend helped me out getting Ally to soccer practice tonight because Vicki was having such a hard time. And we were talking a little bit. She was telling me some of the things she has told her kids about Vicki and about autism. I've always noticed that her kids, anytime they see Vicki, will stop and say hi to her, 'Hi Vicki' and wave at her. And Vicki (although sometimes has to be prompted) always says hi back and waves. That means the world to me. Again, it's the little things.
Joey wanted me to go on his field trip this Friday (I was shocked, because he IS a 6th grade boy!) and while we were talking and waiting for Vicki to come out to the van after school, I told him that we had to take Vicki to the neurologist this Friday. And without missing a beat, he said, 'I understand mom. Don't worry about it. I want Vicki to get back to normal.' And I thought that his choice of words was so cool. Vicki getting back to normal. Vicki getting back to Vicki. He knows. He understands. He gets it better that I do. It makes my heart want to burst.
was for Vicki to get out of the van when we got home...) , 'Look at my prinsss book soon but she must be karfl with it.' Her new princess book she got from a friend at her birthday party. She was ready to give it to Vicki and share. And she did. She knows Vicki really really likes it. She knows. She understands. She gets it better than I do. It makes my heart want to burst.
And for my Vicki. My heart is singing for and to you tonight:
I'll be there for you
These five words I swear to you
When you breathe I want to be the air for you
I'll be there for you
I'd live and I'd die for you
Steal the sun from the sky for you
Words can't say what a love can do
I'll be there for you
And thank you all for being there for me. xoxo
Tuesday, April 24, 2012
Day 24. Year 2.
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
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
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.
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