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

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

Day 28. Year 2.

Hush, little baby, don't say a word.
Papa's gonna buy you a mockingbird
And if that mockingbird won't sing,
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.

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....


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
             Yelling
o   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 task
       o   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 quicklyàwhat 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....
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
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





    

    

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

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

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

    

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.

    

  
    

Saturday, April 21, 2012

Day 20. Year 2.

T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.
T.G.I.F.

Last Friday night
Yeah we danced on table tops
And we took too many shots
Think we kissed but I forgot


Last Friday night
Yeah we maxed our credit cards
And got kicked out of the bar
So we hit the boulevard

Last Friday night
We went streaking in the park
Skinny dipping in the dark
Then had a menage a trois



Just wanted to preface this post with some crazy Friday night antics (courtesy of Katy Perry,  pop star).

And here's what really happened. (courtesy of Rosezella, the exhausted (gasp) middle aged, not 20 anymore, mommy who likes to go on a date with her husband somewhere we can actually hear each other when we talk instead of yelling over loud music, going somewhere that doesn't make my hair smell like smoke, and then going to shop in stores that are not fun at all when you have 3 kids with 6 hands, make that 24 hands because they turn into octopuses, or is it octopii?, when they are in a store where there are breakables, then decide not to go to a movie that they really didn't want to see and pay a zillion dollars for on the big screen, so instead drive around for a few minutes because we don't want to go back home before 10 pm, because that would be really lame!! then get home, put on pj's and a movie, and I promptly fall asleep and snore loudly... which by the way I am just getting up from now and am in that slightly still groggy sleepy state, hence the really bad post!!)

Last Friday night
Yeah we went to Applebees
Can I have a water with lemon please?
It was nice out on our date.

Last Friday night
Yeah we went to TJ Maxx
Bought a candle, paid some tax
Don't forget the Dollar store.

Last Friday night
We went walking hand in hand
Didn't see the movie that we planned
Came home at 10 and fell asleep.

And you know what? That was the perfect date night for my husband and I. Wow, what a difference from 15 years ago... it's funny the things we crave now and enjoy doing together. It's just nice to take a step away, take a deep breath, and let my nerves relax a bit, which I find extremely difficult to do.

I'm honestly not sure where I am going with this tonight. In case you haven't figured this out about me... I *think* I might be an anxious person. I know that I never used to be this anxious, maybe it was just having kids, maybe it was having a child with autism, maybe it's just in my nature to be anxious. I often try to plan ahead and think out possible scenarios for what 'might' happen, or what 'could' happen. What if? Yes, I am one of those people who check the locks on our doors not once, but 10 times a night, go back to my house to make sure the curling iron (well, now just iron) is unplugged and the stove is off. And do you want to hear something crazy? I am always a bit more anxious when it is just myself and my husband going somewhere. First of all, it doesn't happen that often, when it is just us in the car without one or all of the kids. And, gosh, I hope I am not the only parent who has ever thought about this, because then I will know I am completely irrational and off the deep end... I don't think I could ever fly somewhere with just my husband. Or drive somewhere long distance with just my husband. What if something happened? Then what? What if something happened to both of us? What would happen to our kids? Maybe I'm thinking about this because I just saw flyer about learning about guardianship for a child with special needs; we attended one of those presentations in the past.  And I miss my dad and I miss my dog. And I know that no one is infallible. And as much as I plan and try to control things, there are some things that are beyond our control. And there are some things that scare the shit out of me to plan. Wills and guardianship. No one ever wants to think of that kind of stuff. What would happen if something happened to both of us, who would take our kids and raise them? If that's not enough to ask someone to do, what about asking them to not only take our 3 children, but take one that is going to need support for the rest of her life. And it's not going to be easy. And I've thought and thought about this. And I sit and cry about this. Who would want Vicki? That sounds like such a horrible question! I want Vicki! I want Vicki! And everybody that knows Vicki, loves Vicki, and will always have a special place in their hearts for Vicki. But who would be able to provide the care for Vicki that she needs? Day in and day out...  I HATE these questions! And I HATE thinking about things like this. And I HATE writing when I am groggy, because this is what I come up with. Things that I never really want to talk about. Things that scare me so much that I push to a little dark corner and try not to ever look at and pretend I never have to. So, I think I will push these things back into the corner, put on a smile, and sing the Katy Perry song again. 6 am is coming really fast...lots and lots of stuff to do. So, I think I will try to go to bed now. But of course, now that I am thinking about stuff now, I will go to bed and stare at the ceiling until about 4. So, maybe I should wake my husband back up and put another movie on. Because that will guarantee that I will promptly fall asleep. :) Thanks for listening to some of my little black corner stuff. I plan on being all bubble gum and cotton candy and hearts and rainbows and unicorns and glitter tomorrow. xoxo

Thursday, April 19, 2012

Day 19. Year 2.

I decided tonight to write a song. Wanna hear it?

The emotions of my pre-teen go up and down,
Up and down, up and down.
The emotions of my pre-teen go up and down,
All day long.

The words that she repeats are, "I want no,"
"I want no, I want no,"
The words that she repeats are, "I want no,"
All day long.

The door to her room gets slammed and shut, 
Slammed and shut, slammed and shut.
The door to her room gets slammed and shut,
When she gets mad.


When she doesn't get her way she screams, "Wah, wah, wah!"
"Wah, wah, wah, wah, wah, wah!"
When she doesn't get her way she screams, "Wah, wah, wah!"
All day long.

The people who don't know her just stop and stare,

Stop and stare, Stop and stare,
The people who don't know her just stop and stare,
When she has a meltdown.

The mommy smiles at her and says, "I love you,"
"I love you, I love you"
The daddy smiles at her and says, "I love you, too"
She is loved so much.


I bet you all could sing along to that tune with me. Vicki's no different than any other child, but Vicki's so different from every other child. Some times I look at her and I see a one year old who still explores objects with her mouth. Then I see a two or three year old who is just having a meltdown because they were told they can't have that piece of candy. Other times I look at Vicki and see a five year old who is testing boundaries and pushing buttons, seeing what they can get away with. Then I see a seven year old who is tickled pink with herself for doing something independently and having a job to do, being a helper.  Then I blink and see an awkward teenager, trying to understand her changing body and emotions and reflection in the mirror. Then I see a twenty year old, just about taller than me, with an elegant dress on for an upcoming wedding that she is in. She takes my breath away. But you know what is hard for me to see? It's hard for me to just plain see that 9 year old that is standing in front of me. I can't even fathom how she must feel living it.

I want to share 3 things that happened tonight that clearly demonstrates that I know nothing about the inner workings of a child's mind...especially my child's mind on autism. That's an odd way to state it, but .... do you remember that public service announcement years ago... with a frying pan and an egg? 'This is your brain. This is your brain on drugs. Any questions?' I think there should be a new PSA for autism. "This is your brain. This is your brain on autism. Any questions?" But I don't see a frying pan with an egg for this one, I see a starry, starry sky and then I see bunches of beautiful fireworks going off in all directions, making the most beautiful patterns and sounds, but still scaring the crap out of me when those loud boomers get put off.

OK. Back to my 3 examples from tonight.

1. Vicki loves going on walks. And we've incorporated that into her day, so the girls that work with Vicki take her on a nice walk afterschool to enjoy the weather, get some great exercise, and just have fun. Vicki loves going on walks. But something has happened over the past month and I hate that I am terrified to take her on a walk now, especially if I am by myself with her. At some point in the walk she just shuts down and sits down. And when Vicki sits down and makes up her mind, there is no getting her to get up. And it's scary when it's on the side of the road. We don't want to hurt ourselves getting her up, and we definitely don't want to hurt Vicki. So what do we do? What do you do when nothing is motivating her to get up? When there is no reinforcer at all that will make her budge? How long can you 'wait her out?' I can't just drive the van up to her and bribe her to get in it. Anyway... we were having such a good day today, we thought we'd try again to walk. And Ally went with us on our walk. Layse black cat even went with us on our walk. And it was all good and happy and then. Boom. She sits down. After much discussion and thinking and first-thenning and trying to figure out how to get her moving again, I finally walked home with Ally and Vicki and her therapist stayed there. I didn't want to get the van. So we took Layse home and Ally got her baby stroller and some mini m & m's just in case... Well, Ally ended up eating the m & m's. And Vicki thought that Layse black cat riding in a stroller was amusing. Maybe in Vicki's mind she just decided she didn't want to sit anymore. Whatever the antecendent was, we'll take it. Oh yeah. Vicki pushed the baby stroller with Layse in it up the hill (of course the stroller was so short that she had to bend over to push... and half way through, I think her back was sore, so Ally pushed. :)  And we made it home. What a feeling... seriously, we made it. Without the van, without my husband... the 4 of us conquered a walk today. And it felt great. However, I am already stressing about our next walk....

2. Vicki loves her visual schedule. Usually she has 'homework' to do afterschool. She's got her little homework square velcroed onto her schedule. And I neglected to take homework off her schedule when I saw there was nothing in her backpack. So when we got to 'homework', we said 'no homework today' and took it off. Seriously, what kid wouldn't like that? Well, Vicki. She was not happy. At all. But she worked through it after dumping out a big box of her reading books. Which she did pick up, very grudgingly. Where do kids learn those looks they give you?!? :) You know.. the, 'I want to squish you like a bug, I despise you' look? That's not in Vicki's emotion program. :)

3. Oh my gosh, oh my gosh... Vicki is amazing. I seriously am baffled with her memory. And I know that we have only touched the tip of the iceberg with her. She is brilliant. She was telling me about her day again tonight... and was talking about ABC coloring... (love those color wonder books!!! Seriously, I should buy stock in them!) Anyway, she said, 'A-red. B-yellow, C-blue, D-brown....' and went through the whole alphabet naming different colors for each letter. It had me curious. It wasn't in rainbow order which it usually is when she talks about colors... I got out her color wonder ABC book, and she was right. Every one of them. That's the color she colored the letter. How can she remember that? Now she has only colored up through 'O' I wonder if the rest that she listed is what she has chosen and will color them when she gets to it? Vicki gives me goosebumps at least 2x a day. Wow.

So, that's it for me tonight. This mommy on the computer is very tired, very tired, very tired.... :)

Wednesday, April 18, 2012

Day 18. Year 2.

So I'm calling tonight's post... 'a whole lot of random thoughts.'  And I was thinking, you know how people say they can see the wheels turning when you are thinking of something?... I am picturing Fluffy the hamster (have any of you read the Fluffy early reader series? Ally and I read 'Fluffy meets the tooth fairy tonight') running in a little cage in my brain and getting dizzy from the wheel -turning one way for a second, then the opposite way, then back again. My husband gets so frustrated with me because I can never seem to finish a sentence, I'm already onto a new thought. Always thinking, that's me. :) So let me tell you some things I am thinking about.

1. I really like the new additions of Jerome, Libby, and Vlad (and Snot, who we haven't seen since he burrowed under the sand late Saturday night) to our salt water aquarium. Bob and Larry seem to be indifferent to them. These new little hermit crabs are speedy little creatures. They never stop moving. They start going one way, then turn around and go the opposite way. I think they are kindred spirits of mine. Little balls of stress and energy (not the good kind of energy where I could run a marathon, the bad kind of energy when you know you drink too much coffee!!) 

2. Although I don't think you can actually classify my blog as having any kind of writing style or any kind of coherence at all, I just want you to know that I really do proof my post before I publish it. But somewhere between 'preview' and 'publish' whole paragraphs, parts of sentences and random words get lost. I think they end up in the land of lost socks. I don't usually read my posts after I publish them, but I did the other day and thought, what the heck? So, sorry!!!

3. As I sat down to type, I happened to look over at my husband's little basket he uses for emptying his pockets and stuff and noticed a colorful puzzle piece lanyard. He had been at a conference the past few days and their lanyards were autism puzzle pieces. Normally, I don't get all that excited about publicizing 'autism awareness' I guess because I am all too aware and I feel odd wearing stuff that screams autism, if Vicki is with me, you will know, I don't need to wear it on my shirt... Anyway, for some reason this lanyard made me smile and feel all warm and fuzzy.

4. I really, really love checking things off my to-do list.

5. I don't know what I would do without the drama and excitement of my family. Even though all I ever want is a few minutes of quiet, I think I thrive on being super stressed and frantic. If there weren't a zillion things going on at one time, I don't think I would know what to do with myself. Maybe I would organize tax stuff for next year. HA! I am an only child and therefore lived a fairly quiet, calm childhood. So all of this and by 'this' I mean my life with 3 kids, 1 husband, 5 hermit crabs, 1 slug (seriously, a slug - I already said my husband!) Wow... Sometimes I am so on I just want to play the   ba-da-bing in the background of my hilarity. (Yes, I think I just made up a new word, if it is already a word, I really like it and will continue to use it. )

6. I think I am in a good mood tonight, which is odd. Some yucky things happened today. But so many good things happened today too. Every once in a while it is just nice to smile, take stock of everything you have to be thankful for, and then just be happy with the craziness and the chaos and the struggles... because in the end, it must make us stronger. I feel a Kelly Clarkson song coming on...

And, finally, I think I am so giddy because I had a great conversation with Vicki at bedtime. Here it is, best as I can remember it, I may have omitted or changed the order a bit, unlike Vicki... my memory is not so good! :

Me: How are you Vicki?
Vicki: I am fine.
Me: Are you happy or sad?
Vicki: Happy.
Me: Show me a happy face.
Vicki. :)
Me: What did you do today?
Vicki:  Joey. school. home. take a shower. medicine. breakfast. Capri sun. granola bar. school. I pledge allegiance to the flag. Of the United States of America. And to the republic. For which it stands. One nation. Under God. Indivisible. With liberty and justice for all. Magazine. Pink Computer. Starfall. (a reading web site). Homework. Time for P.E.
Me: What did you do in P.E.?
Vicki: Balls. Red Ball. Oranges Ball. Yellow Ball. Green Balls. Blue  Balls (silent snicker from mommy... what the heck? How old am I? I don't think I am a 13 year old boy!). Purple Ball. One. One Ball Red. 2 Two Ball Oranges. 3  Free Balls Yellow. 4. Four balls Green. 5. Five balls Blue. 6. Six balls Purple. Frow (throw) ball red. Frow ball oranges. Frow ball yellow. Frow ball green. Frow ball blue. Frow ball purple. Lunch. Cheese sticks. Dip. Strawberries. Apple. Fruit. Cookies.
Me: How many cookies did you eat?
Vicki: One. One cookie.
Starburst. Packback (backpack). Home. (girl's name that worked with her today). Calendar. Homework. Reading. Potty. Cars. Dance Class. Pink Dress (they got their costumes for recital tonight!). Home. Exercise. Dinner. Soup. Bread. Butter. Crackers, 5. Water/ice. Brownie, chocolate chip. (chocolate chip cookie bar). Medicine. Strawberry Milk. Clean up. Bed.

And I hang onto every word she says. I love talking to my daughter. Oh yeah. It's all worth it. A million times over. xoxo

Tuesday, April 17, 2012

Day 17. Year 2.

Money. Money. Money. Money.

Tax day. Tax day. Tax day. Tax day.

Blah. Blah. Blah. Blah.

Getting things done ahead of time. Now that's a novel idea. Why can't I be that person? It's not like tax day jumped out from around a shadowy corner and said, ' ah ha. gotcha! Didn't see me coming, did ya?' What is it about an approaching deadline that catapults me into suddenly being productive? What the hell was I doing with my time before? I was busy, I wasn't just sitting around. Honestly. It baffles me really. So, yes, I have numbers and money on the mind tonight.

Money and autism. Autism and money. It sucks. It really sucks.

Wouldn't it be great if we could just go back to bartering for services? I'll rub your back (yes... in a previous life it seems, I once was a physical therapist...) if you talk to my daughter (getting some speech therapy services.)  Everybody deals with financial strain; It's a topic of too many conversations that you never want to be having. Everybody worries about money. Making it, spending it, saving it.

I don't want tonight's post to be a whine fest, but, well, maybe a wine fest... after all, we finally hit submit on our taxes. :)  Yes, I worry that I will never be able to go back to work because of Vicki's needs. Vicki can't go to a day care. Vicki needs me to take her to and from school. I need to be available for those texts and calls from school when something goes wrong. I need to be there for her, I want to be there for her. I need to go to this meeting or that meeting to talk about Vicki's progress and goals. I need to call this doctor, make an appointment for that doctor. Get this medicine filled that's not covered by insurance. Donate to that autism organization because I want their research to directly benefit my daughter. What about Vicki's future? What about my future? What about our future? What can I do to ease the burden of financial strain? Why is it that the amount of money we can afford or can't afford to spend on therapies and medicines and doctors makes me feel guilty - for spending it, for not spending it. What if money were no object? How much more could we have helped Vicki?  Whine fest done. Wine fest commencing. :)

Enough about that. No wait. I have one more thing to say... Guess how much it costs to smile down at my daughter and look into her eyes? Guess how much it costs to spend that extra 10 minutes with her to allow her to slowly go through her day by reciting her visual pictures? Guess how much it costs to get goosebumps when I hear Vicki say, 'I love you Mommy'? Guess how much it costs to hear her recite The Lord's Prayer? Guess how much it costs to watch Joey hold Vicki's hand and dance with her? Guess how much it costs to watch Ally grab Vicki's hand and skip down the hall together? Guess how much it costs to hear Vicki sneeze and then hear her immediately say, 'Bless you' ? Guess how much it costs to see Vicki ride on daddy's shoulders and giggle because she has to duck to get through the doorway? Well, it cost me a box of tissues and it gave me everything I've ever wanted. I feel like I've won the lottery already. (And on that note, I'm off to bed... and it's not even midnight!)

Day 16. Year 2.

     I've been thinking a lot lately about how lucky I am and how lucky Vicki is to have so many wonderful, truly exceptional people in our lives that love and support us through it all. What's that saying.... 'When life hands you lemons, make lemonade.'  Well, I have to say, sometimes the lemons really make me pucker and say ewww... But, you know what? So many people step up to support you when you really don't think you can stand up by yourself. And so many people are there ready to give you a cup of sugar to make your lemonade sweeter. :)  Well, it was 90 degrees today... there's something about a tall glass of lemonade over ice that really hits the spot!

     But seriously, though... I feel so blessed. I've often thought how lucky I am, that God chose me to be Vicki's mom. I learn so much from Vicki. All of my kids teach me things everyday... but with Vicki, I've learned to appreciate and celebrate every victory, no matter how big or small it may seem. I love seeing the world through Vicki's eyes... the simple pleasures, the little things. I often think about how 'children with autism' have difficulty with emotions. Yes, Vicki struggles with her emotions. But so do I,and so does everyone, it's just different. I can assure you though that Vicki can feel emotions, I can only imagine the depth of what she feels. As much as I love seeing the world through Vick's eyes, I hate seeing the pain and the confusion too... I can't imagine what she is feeling or going through. Sometimes when I am trying to explain something to Ally about Vicki, I get all choked up. Because I really just don't know. I really have no idea. I really can't explain.

     Anyway... I don't want to paint a picture that is all rainbows and unicorns. There are days, and there have been many days in this past month, where things really suck. And I have a little pity party for myself, myself... how selfish of me. Oh my gosh, it's so hard... I'm having a bad day. I feel so frustrated. I'm overwhelmed. I don't know how much more I can take. Whaa, whaa, whaa... feel bad for me. But, you know what I've been thinking about so much lately? All of those people who are helping myself and Vicki make lemonade. All of those people who choose to be in the trenches with us. Who choose to give Vicki everything they have and more. The teachers who choose to work with Vicki day in and day out, year in and year out to give Vicki every opportunity she deserves. It's not the money that keeps them coming back everyday.  The amazing girls I've hired over the years to come into our home and give everything of themselves to Vicki. The girls who see us at our worst and most vulnerable. And the girls who come back day after day, year after year because they love Vicki. They know the feeling you get when Vicki gets something, the goosebumps that appear when Vicki says your name unprompted. They share with Vicki every moment. The good moments, the bad moments, the exceptional, unforgettable moments. I always worry that someday, after a particularly bad set of moments, that they will forget the good moments and not want to come back. But they always do. And I owe them everything. Every person that has come in and touched our lives, and has given so much of themselves to us. Every person who has just been there to listen. Every person, including you.

     Today was full of lots of bad moments, lots of 'no's', lots of struggles. But it was also filled with good moments, spontaneous moments, goosebumps in a good way moments. Let me leave you tonight with a little story of a good moment. I don't know how often I've mentioned Vicki's love, her stuffed animal that she has become really attached to over the past couple of years. Every child has that one special blanket, or that one special stuffed animal, or that one special toy that is their security blanket. For me when I was young it was a little baby doll that I called 'me me'. I still have her. :)  And Vicki has 'Layse black cat'. Layse was the name of our beloved doggie we had in the family for 13.5 years who we had to put to sleep this past October. I love that Vicki calls her stuffed animal 'Layse black cat'. Although I can't really figure out if it's a dog, a cat, or a bear. All I know is that Vicki loves it. :) And Vicki takes it with her when she goes for rides in the car. Today Vicki had horseback riding and then she went to the store with one of the girls who comes in and works with Vicki... Anyway, I didn't realize until bedtime, when we gathered our stuff up to go to bed (yes Ally has 'Glitter' her doggie in a pink tutu, and Joey has 'Willow Breeze' his big Bengal tiger... shhhhh NO one is too old for a stuffed animal!) that 'Layse black cat' was not on the couch with Vicki and when we told her to get Layse, she couldn't find her. And like any child who loves their special security blanket, Vicki was not happy when she couldn't find her. Any child would be upset and shed a few tears, maybe more. But with Vicki, it was a bit more. She kept repeating 'Layse black cat. Layse black cat. Layse black cat'. I texted the girl that had taken Vicki today just to see if LayseLayse black cat that she's never been without her, until tonight. It could have been a very long night. A very long night. But, after she realized that Layse black cat was in her car, I didn't have to tell her how much Vicki was upset. She just knew. And without me asking, she jumped in her car and drove back up to our house at 9:30 tonight about 30 miles round trip, just so she could place Layse black cat back in Vicki's arms. Now that is some sweet lemonade. xoxo