Day 19. Year 3.

I've been thinking a lot today about some beautiful comments and notes I've been receiving from you... First off, thank you. xoxo  Second, I tend to re-read my posts from the night before the next morning... just to see if I was actually awake and coherent when I was writing. :) Sometimes when I re-read my post, I think, ugg... that was absolutely terrible. Other times I think, wow, I am the wittiest person I know. :)  Anyway... as I was re-reading my post from last night... and reading some of your touching comments... I started thinking about things a little more... And on my facebook feed I saw a link posted from Dove's new ad campaign... have you seen the clip? It's called, 'Real Beauty Sketches' and it features a sketch artist drawing 2 portraits of the same woman, one as the woman describes her own features, and the other as someone else describes her. Then the woman gets to look at the 2 sketches side by side and she sees how she sees (wow that's a tongue twister!) herself and how others view her. I've read a few articles written that slam the campaign for still not using 'real women' ... But whether you agree with how Dove peddles their ad campaign or not, the idea behind it is interesting.  I think what it boils down to, is that everyone can be amazing. And no one really sees themselves as others see them. I think most people feel inadequate and feel like they don't measure up to whatever outrageous standard they hold themselves to. And as I was describing that 'perfect mom' scenario in my post last night... I took bits and pieces of her from real women I know who never cease to amaze ME. So she's out there, that 'perfect mom', because she's you and she's me, and she's that lady in the store that has one screaming toddler sitting in her cart grabbing for the candy and the infant asleep peacefully in the moby wrap on the mom's chest, and she's the mom who stays up until 2:30 in the morning baking that perfect cake for their child's birthday, and so on and so on. We all work our butts off. We all have moments of amazing. And we all have 'oh shit I suck at this' moments too. But if I can learn to somehow balance the amazing with the oh shit, then, that's not too bad. I'm just your average mom. And that's good enough for me and for my kids. :)  Any who... thanks to everyone who sent me messages. Sometimes we all just need to hear that we did a good job.

You did a good job today. :) 

Well... now... moving on to today... First let me check off a few things on Vick's Did-It-List. Guess what? There were no more cherry granola bars today. I took a deep breath and offered her the choice between a strawberry granola bar and an apple cinnamon granola bar. She chose the strawberry. A victory at 8:30 this morning. Pretty good way to start off my Friday!
Let's see... what else did she do? Remember how I told you today was our 'doctor date'... Vicki likes to go out for lunch after a doctor's appointment. And lately she's been wanting Ruby Tuesdays after each appointment. Some days we do it and go to Ruby Tuesdays... and other times we try for a different restaurant. But usually we'll cycle through the ones she really likes... Applebees, Ruby Tuesdays, Chili's etc... Today we decided to try something 'different'. Tropical Smoothie Cafe. Yumm-o! I think I've said this before, she's the only one of our kids who really knows how to eat real food. :) She's got quite the mature palate... she loves exotic things... like olives and hummus and those red onions and cold lima looking beans in salad bars... :)  I call these exotic because it's not pizza and chicken nuggets and mac and cheese. She likes those too... don't get me wrong... she LOVES mac and cheese... Anyway... We got out of the van at the Tropical Smoothie Cafe and she skipped inside once she saw the smoovies (as she so adorably calls them). (As an aside... I know I should correct some of the substitutions she uses for letters... but let's face it, sometimes what they said instead is so darn cute... it's hard to make them say it right.)  I love places that have pictures of food on their menus. Not only is it appealing to me when I go to order.... we all like to see what we're gonna eat... But for Vicki, it's especially nice since she is such a visual person. We asked her what she wanted and gave her the choices of chicken, turkey and whatever else they had. Chicken. I want it. Chicken. Then we pointed to the menu and asked her if she wanted a wrap or a flatbread sandwich. She immediately said wrap... then looked again, back and forth, and changed her mind. Flatbread. Flatbread. Chicken. Flatbread. It was great seeing her really think about it and choose what she really wanted. Not what she was used to. Or not just the first choice. But her choice. :)  Chicken pesto flatbread sandwich and strawberry yogurt smoovie. Victory.

Oh, and the last thing I wanted to check off of Vicki's Did-It-List today... She said yuck. That seems like an odd thing to be excited about. But I am. I don't know that she's ever said 'yuck' before. And she said it when she was eating some pineapple and mango tonight for dessert. I guess there was a hard piece of the pineapple core or a little brown spot or something on a piece of the pineapple. And she didn't eat it. She said yuck and she left it in her bowl. That's a pretty big deal for Vicki. And a very appropriate thing to do. You see, sometimes I don't know if she understands that she can leave food on her plate. She doesn't have to eat everything. (Well, heck, I don't understand that ;) either.) Anyway... I often wonder if she understands what it means to be full. Or to taste something and decide you don't like it or want it. I think it was this past fall... we were having issues with school lunch peas. Vicki just had to get them. But we didn't think she actually liked them... she was doing a lot of really strange things as she was trying to force herself to eat them... It took a few months before she was able to move through the line and not choose the peas. It was ok to not like them and not eat them.

Well... I wanted to talk tonight about Vicki's doctor visit today... But I guess I had a few other things on my mind... and I don't want to think about all the things associated with her doctor visit right now. I'll write about that tomorrow... hopefully. Right now I'm going to go watch a movie with my amazing husband and partake in a glass of wine. Maybe I put the wrong kinds of pressure on myself.. if my to-do-list had 'enjoy a hour with my husband and drink a glass of wine' maybe it would force me to make the time to do that. I think I will. That will be amazing. ;) 

xoxo

Day 18. Year 3.

Have you seen the meme that's been circulating lately on the interweb? ;)  (I think that's what it's called... isn't a meme one of those funny picture sayings with the colorful backgrounds that sometimes make you laugh out loud at the computer when no one else is around?)

Men: If you ever want to know what a woman's brain feels like, imagine a browser with 2,857 tabs open. All. The. Time.

That's kinda what I feel like tonight. I just keep opening new tabs up in my head... I need to do this... I have to finish that... then I become overloaded, and I'm pretty sure this computer is about ready to crash. It's been a long emotional week so far, and it's far from over...

I don't know what to talk about tonight. I might just be all talked out. Eh, my husband would beg to differ on that comment. I had to stop and fill up our van's gas tank today for our ' doctor date' tomorrow with Vicki's PANDAs doctor. And as I was filling up the tank, I kept thinking about how I need to fill up my tank, because I feel like I've been pretty much running on empty. Analyzing autism is exhausting.

I've been thinking about that a lot this week. With Vicki's behavioral decline over the past few days... I feel frustrated. I feel scared. I feel angry. I feel sad. I feel exhausted. I feel. I feel.
And the worst part, always the worst part...is that I don't know how Vicki feels. :( 

What I do know is that it's hard to be 'on' all of the time. Do you ever just watch other parents, other moms, who when they talk to their kids... you think, are they always 'on' like this? Do you know what I mean? They always seem to have just the right thing to say to their kids... just the right thing to do for their kids... They always seem so put together, and just so 'on'. They seriously must have read every parenting magazine from front to back, heck, they probably wrote some parenting books in their spare time. I bet they got up at 5 am, went for a run and then did some yoga, had their kids all finish their chores before they went to school, had their healthy lunches packed the night before, went out and worked a 10 hour shift at their full time job, came home, found time to make a yummy sit down dinner straight from the pages of pinterest, got their kids to all of their activities, helped with homework, put the kids to bed by 8, and spent the evening with their husband drinking wine and finishing up their homework for their class they are taking to get that second masters degree. In my head that's what every other mother's day looks like.
I feel inadequate. And using autism as my excuse only gets me so far.
Hmmm.... I didn't mean to post about all of this tonight. I just heard Gavin Degraw's Sweeter a little bit ago... maybe that's why this particular tab opened in my mind. ;)

I just wanna take
Someone else's holiday
Sometimes the grass is greener
And someone else's sugar
Someone else's sugar
Sweeter

Anyway... I started talking about being 'on' all the time. I was thinking about that this morning as Vicki and I were hunting for a cherry granola bar for her to eat for breakfast. And again that fear creeps up inside of me. Seriously, fear materializes because I am not sure there are anymore cherry granola bars? Yep.  Would today be the day a cherry granola bar would make or break our day? I found one. Phew.  I will defer this until tomorrow...

You would think that by now I would have a good understanding of behaviors... and how to analyze them. I took some classes a few years ago so I could understand. I got all A's. That means I know it, right? But you know yourself, applying something is so much harder than just knowing what you should do. Nothing is ever black and white. There are always 50 shades of gray. Damn. And now I opened tab #2858. ;) 

But seriously... literally in EVERY single interaction I have with Vicki, I am nagged by the little voice in my head... I am constantly second guessing my decisions. ABC. Easy as 123. Antecedent. Behavior. Consequence. Easy as 123. No. Not really for me. I think... crap... should I have picked this battle? should I have responded in that way? Did I just create another obsession for Vicki? If I do this one, will it become a 'have to' for Vicki to do all the time? Should I take away this magazine because it is looking really ratty and torn up? If I take it away, will Vicki notice? Of course she will. Do I want to fight that battle today? I don't know. It's every. little. thing. I didn't read about this in my book.

I'm probably not making any sense tonight... my computer screen is starting to freeze. Gosh I am so funny sometimes with my analogies. :) 

Let me leave you with a sweet anecdote from Vicki tonight. She was playing Barbies. And that in itself is a big Yay!! She was looking at her one Barbie and I hear her say. Barbie. Doctor. Boo. Boo. So I looked at her Barbie doll and it seriously looked like Barbie's hand had some dry skin or sunburn... some of the plastic was peeling off. I picked a little bit of it off and then I got one of those tiny circle band-aides out and put it on Barbie's hand. I gave it back to Vicki and she smiled that cute little Vicki smile that I just adore. And suddenly all of my inadequacies fade away. I fixed Barbie. And Vicki was happy.

If only I could put a band-aide on autism for Vicki. How I wish I could sweet girl.
Oh, ps.. I'm not a sugar kind of girl. I, myself, like equal. Thanks for listening. xoxo

Day 17. Year 3.

Before I start in on tonight's post, I just wanted to say Thank you! Thank you all so much! I didn't mean to freak everybody out. Yesterday was a bad day. But it definitely wasn't the worst day I've ever had. And it was no where near as bad as so many of the days we had last spring. I think everything just kind of fell apart, including me. I was so humbled by all of your texts and messages and prayers. Really. It is nice to know so many people care. And it is nice to know that there are some people out there who read and follow my blog... it makes me feel less like I am talking to myself. :) And the less I talk to myself, and answer myself, the better. :)

I am in much better spirits today. There were lots of things today that were just as bad, if not worse, than yesterday... But there were a lot of good things today too. And I choose to focus on them tonight.

First of all... I wanted to let you know about Vicki's necklace. At 7:50 this morning, Vicki asked for her necklace. (And by 7 am, I had already heard from quite a few of you with thoughtful words and prayers). It was really quite amazing to me. As Vicki was asking for her necklace, it was as if I felt all of you thinking about her and praying for her at that exact time. And it felt so nice. It felt so nice to know that even though Vicki and I were alone in the bathroom getting ready for school, we were not alone at all.

I know I sound like a broken record, but Vicki never ceases to amaze me. Vicki asked for her necklace. I paused, took a deep breath, and said, necklace is broken. Vicki looked at me and repeated broken. Then she paused and said glasses. And that was it. She had moved on. And we went about our day. (There were a few times this morning though getting ready for school where there was hesitation on Vicki's part. And that still makes me very nervous. But we did it. We got to school.) And you would not believe where her necklace was. I guess it had fallen off at school and it was in a Ziploc baggie in the bottom of her backpack. I just didn't know it. So, all good things. Vicki was able to do something different and not wear her necklace this morning. (Which may be a good thing because she has been putting it in her mouth a lot lately.) And we still have the necklace that means the world to Vicki. The necklace Ally gave to her Big Sis.

Moving on.... another way to lift your spirits... do something for yourself. So I did. I colored my hair, not because I wanted a new color but because graying hairs makes me feel stressed and old and very, very icky. I washed a little of that gray right out of my hair, and along with that, just a wee bit of stress.

'Tis the season for IEP meetings and ESY meetings and BIP meetings and Triennial meetings. Today my husband and I had Vicki's triennial meeting. As I mentioned yesterday, I really don't like reading standardized testing results and reports. They depress me. Those papers and those numbers are not Vicki. I know Vicki and I know how brilliant and beautiful and amazing she is. And you are not going to find that in any one report. And that saddens me. There is no one that I have ever known before in my whole life that works harder than Vicki. And if you look at the numbers, the numbers don't show you the grit and determination and perseverance of this little girl.

Anyway... even thought I don't like reading the reports, I do like dialogue. Because I am with Vicki and see Vicki and know Vicki's every move... I think it tends to make me less objective sometimes. I end up falling into tunnel vision with Vicki and I get complacent and don't try to shake things up at all. When I read observations that others, who don't know Vicki like I do, make... it's very interesting to me. I see things that I didn't see before, or I see all of the time I don't see them anymore. I really don't think that sentence made sense, but I know what I am trying to say. I am just so involved in everything Vicki that I lose sight of some very obvious observations. Anyway... it's interesting.

Do you want to hear something really bad? Sometimes I look forward to school meeting days, not because I like meetings... no I really don't like meetings. I tend to cry a lot before and after. I never feel like I do enough for Vicki. But... one of the reasons I like meeting days is that my husband takes the day off work... and after our meeting, we get to go out on a lunch date. We haven't gone out on a 'real' dress up go out to dinner and a movie or go have a drink date in months and months. Our dates tend to include Vicki, when we grab lunch after a doctor's appointment. :)  So today, after our almost 2 hour meeting, we went out to lunch. Tropical Smoothie Cafe baby. :)  And then we went to Lowe's. :)  We were going to go to Bed, Bath, and Beyond... but there just wasn't time. (movie quote, anyone?)

I'm going to skip over some of the not so good stuff today... again because I am just not comfortable talking about it right now... But I will say...well... autism. you suck. again. Big time. And I hate what you do to Vicki and to me and to our family. I hate the stress and I hate the tears and I hate, hate, hate the fear. As Vicki gets older, I have become more cognisant about how autism affects me. And I hate to say this because this makes me feel weak, but I am afraid of Autism. I really am. Sometimes the fear of what could happen is almost paralyzing to me. Autism does not just socially isolate the child. Autism isolates the parents and the family as well. Fear isolates me.

I'm done with that for tonight. I'll come back to it later.

I want to end tonight on a positive note... Yet again, Vicki never ceases to amaze me. I know I've told you how important Vicki's visual schedule is to her. She holds that pink binder with the velcroed pictures on it like her life is depending on it sometimes. And maybe it is. That schedule helps her to see what to expect, to know what's coming next, to anticipate, to prepare. Very rarely do I deviate from what she has posted on her schedule. But tonight... oh tonight was such a beautiful spring evening. The weather was perfect. And today is my crappy 'run the kids to just about everything they are involved in night' all in the span of 3 hours...Vicki had dance class. Ally had soccer practice and scouts. Joey had a physical fitness assessment for a merit badge he is completing and then scouts. So, tonight was my chick fil a cheat night. :)  I normally run Vicki and her aide home after her dance class. But tonight I didn't. Even though home was on the schedule after chick fil a... I took her to Ally's soccer practice. (It helped that I knew my husband was there and could help us out with Vicki if we got into trouble.) We had a blanket in the back and we asked Vicki if she wanted to have a picnic outside and play on the playground. She gleefully got out of the van clutching her half eaten chicken sandwich and skipped with her aide down to the grass. The wind was blowing, her ponytail was bouncing and she was happy.
And there is nothing more than I could ask for. xoxo

Day 16. Year 3.

I wanted to post a feel good, happy, upbeat post tonight. I really did. But I post how I feel. And I feel spent tonight. Today was one of the hardest days that I've had in the past few months.

I feel guilty for the way I feel, like I have no right to my feelings today. So many families woke up this morning, forever different, forever changed because of one moment in time yesterday. One moment, a split second. Lives are lost. Limbs are lost. Bodies and minds are scarred with images no one should ever see.

And here I am this evening... crying my eyes out. For who? For Vicki and for me. I'm selfish. I'm selfish and I know it. (Da-ta-da-da- da- da-- te-da) wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, yeah. (sorry, I've been so upset  all day, I need to make myself laugh sometimes. And, boy, I am hilarious. :)

I hate autism. There. I hate autism. I really do.
Autism. You suck. Autism you suck the life out of me, you suck the happy out of me, you suck the money out of me, you suck the time out of me. You just plain suck.

Eh. I feel a little better.

I know I've said it before, everyone who deals with autism says it, but autism is like a roller coaster... up and down and up and down. It knocks me for a loop. And because I don't particularly like roller coasters anymore, I feel sick just talking about this. We are chugging along, creaking up that big hill... anticipation growing... bracing ourselves for the fall we know is coming.  And then we are at the top. Might as well just throw our hands up in the air and scream. Because the fall is so hard and so fast it makes my stomach lurch. There's nothing you can do to stop it though. One the ride starts, that's it. You have to stay on it.

I know I'm being very cliche and very vague. Some things that happened today I just don't have the strength to get into and I don't really want to. Maybe it was just that so many little things (and big things) happened today. I am just overwhelmed right now, at this moment in time.

For instance, I'll share a few of the little things... this morning when I went to get Vicki up for school, she had peed in her diaper again, a lot, which like I said hasn't been all that unusual as of late... but, still, it doesn't start the day out great when I have to wash sheets at 7:30 in the morning. (And I try to be positive... and grateful... that it was only pee on the sheets. And that it was 7:30 and not 3:30 in the morning... right? I am. I am grateful for that. But still, autism. You suck.)

Then as I am taking the sheets off the bed, I see a small piece of plastic by Vicki's pillow, it's very sharp too... I pick it up and wonder about it all day long. Where did it come from? (And yes, here I am grateful too... I am grateful that Vicki didn't put that in her mouth and get it stuck. I can't imagine the damage it could have done. And I am thankful she didn't cut herself with it.) But, where did it come from?  I finally solved that mystery tonight as we were putting Vicki to bed. We had to change the electrical outlets in her room years ago... we couldn't have them down low, so we got covers for the outlets and ran the outlets up to the tops of her walls... There is a plastic outlet cover screwed into the wall by her bed... and when she lays (rather jumps, slides, plops loudly) into her bed at night, the whole bed moves. So last night  the bed must have moved just so... so that it cracked a sliver off the side of the plate. Little things...

Then today I see the school's dreaded number on my cell phone. My heart always drops into my stomach when I see that... and today rightly so... I won't go into details tonight... but Vicki had some behavioral issues that we need to address, again.  More meetings. More talking. Sigh. Autism you suck.

And then after school... the walking that we've worked so hard to bring back... that we just started succeeding with. That we were just feeling comfortable again with. 1:1 walking around the neighborhood with Vicki. Seems like such a simple task. Let me tell you, it is not. And today, well, it was not pretty. She dropped to the ground 3x today. And if Vicki doesn't want to get up, Vicki won't get up. And it is scary. By the side of a road. Just hoping and praying that Vicki will stand up and start moving again. It wasn't even me that had her on the walk today, yet when Vicki's aide texted me, I started shaking like it was me. Autism you suck.

Autism scares the shit out of me. And oh, yeah, Vicki had another poop accident tonight. Autism you suck.

None of these instances, in isolation, would necessarily make or break a day. Well, maybe... some of the behaviors that I didn't really get into would, and have. But put all of these together, and what do you have? One very tired and broken mommy tonight. And the icing on the cupcake? I was sitting on the couch with Vicki trying to catch my breath and I was doing some light reading. triennial testing results for Vicki. I think that I am above reading test results and scores. I know that these standardized tests don't measure who Vicki is or what she is capable of. But it still doesn't make seeing it in print any less painful. That packet of paper is no more Vicki than some of the behaviors she demonstrated today. That was autism. And oh yeah, autism you suck.

Oh, but wait... here's what put me over the edge tonight--- when the tears started flowing too freely. As I was sitting beside Vicki, I gently started rubbing the top of her back and the back of her neck. And then I realized, I don't feel Vicki's necklace. I know I've mentioned Vicki's necklace on my facebook page... but she got it as a gift from Ally right before Valentine's Day. And she has worn it every day since then. She loves that necklace. The half of the magnetic heart that says 'Big Sis' on it. And Ally has the other half that has 'Lil Sis'. Vicki's necklace is gone. And when Vicki realized it, she looked up and me sadly and said, 'heart necklace. Ally. Big Sis' And I started crying. I retraced her steps on her abbreviated walk today. Joey took me. And he held my hand and gave it a squeeze. And he said, 'Don't worry mom. I'll buy a new one for her.' And it made me cry even more.

And I cried today in the car, after school... I made Ally late for her gymnastics class because I was uncomfortable leaving Vicki and her aide alone.. And Ally sat quietly on the chair and waited and when we got in the car and got to gymnastics 10 minutes late, she said 'That's ok mom..I understand.'

Autism. You S.U.C.K.

Gee. I thought that bitching and moaning about autism would make me feel better. It didn't.

And I think I know why. Because. Because I didn't appreciate the fact that Joey doesn't suck. And Ally doesn't suck. And Vicki. My beautiful Vicki. She doesn't suck. Autism might, but Vicki doesn't.

I can't let today go without checking off a few boxes on Vicki's-Did-It List. Especially today. Vicki wore a new bra to school !!! Woo hoo!!! Go Vicki! Not a sports bra, but a real snap in the back bra!
And Vicki asked to pee in the potty 2x on her own today. Woo hoo! Go Vicki! And Vicki said 'ouch. hurt.' as I was combing her hair this morning. Woo hoo! (not that it hurt! but that she verbalized it!) Woo hoo! Go Vicki!

There. Now I feel a little better.

So, if you would tonight... please say a short little prayer for Vicki. That tomorrow is a better day. And that when she doesn't have her necklace in the morning to put on.. that she is ok with that. And that that one moment in time doesn't define her tomorrow.

Thanks for listening. I know it wasn't pretty. I think it kind of sucked. xoxo

Day 15. Year 3.

I tend to think about my blog a lot when I am writing during the month of April... when I wake up, during the day, in the evening, before I go to sleep, while I am asleep. I mull over topics that I want to talk about or things that happened during the day, so that when I sit down to write at night, that blank computer screen doesn't stay blank for too long. I was all set to write a 'pity me. feel sorry for me' post for tonight at about 2 pm this afternoon. You see, I had put a load of dark colored laundry in the dryer earlier this morning. And when I went to get the clothes out of the dryer, I looked at the little insert where the dryer lint collects and I noticed something in the shape of a ball, it kind of looked like a large pit from an avocado, or a big walnut... And I thought, oh geeze... I forgot to check Joey's pockets again... he must have picked up a rock or a nut from outside. I went to pick it up and as I was grabbing it, it kind of mushed up a bit. That's not what a rock or a nut will do. Hmmm.... I investigated a little more, and soon realized that it was no rock. I'm not sure I've ever seen what happens to poop if you miss it... if you didn't see it in your daughter's clothes and didn't realize you washed and dried it. No. I don't think I want to see that again. I was irritated with myself for not catching it.. I was irritated with Vicki for having so many accidents, and I was just plain grumpy. It took me over an hour to clean out the dryer. It was not a fun task. Then I had to hand scrub some of the clothes, soak them , and rewash them again. I was having a nice little pity party for myself and really wanted you to join in tonight.

And then around 3:30 I was browsing facebook while I was sitting in the car rider line to pick up the kids... Of course facebook is where I get all of my news anymore. And I was saddened, as I am sure everyone was, as they watched the events of today unfold in Boston. And suddenly my shitty day (pun intended) didn't seem so shitty. My pity party didn't seem to be as fun. My laundry disaster, not so much a disaster.

In fact, I would say that I am damn lucky.
I am blessed to have today, as shitty as I thought it was earlier. I am blessed to have today.

All I want to do when I hear of such tragedies.. is hold my 3 babies tight and fling my arms around my husband when he walks through the door after work. And I do. I just want to hole up in our little house and never leave. I want to keep my family safe and snug and loved and protected. I don't want them to go to school, or go to the movies, or go to a sporting event, or go to work someday.... I just want them. Always. And I am damn lucky and thankful that I have them today.

I often wonder, were there this many bad things that happened 30 years ago when I was 8 years old? Is it that much easier to see such tragedies unfold because of the ease of information sharing? Today,  I just had to log onto facebook and see the pictures of the post bombing mayhem, read about the horror, and see that the whole world is praying and staying strong for Boston. Or for Newtown. Or for Virginia Tech. Or for Aurora.

It saddens and sickens me the things that I have to 'explain' to my kids, when I really don't know how to explain them or understand them myself. When I was 8, I remember playing with my baby doll and coloring a picture. I remember collecting stickers and putting them in my sticker book. I remember eating Sunday dinner at my grandparents house. What will my daughter remember from when she was 8 years old? A shooting? A bombing?

Well, I'll tell you want I want my 8 year old to remember... I want her to remember that tonight I showed her my old Spirograph.(The little plastic round circles that make shapes when you turn them inside of a larger circle.) The one that I just dug out of my mom's attic. It still has some papers in it from when I was a kid showing all of the mistakes I made to make that one perfectly beautiful, colorful picture. I want my son to remember that we enjoyed Duck Dynasty tonight when we hung out after the girls went to bed, Jack. And I want Vicki to remember that we laughed and laughed and laughed, the kind of laugh that makes you gasp for breath and makes you have to pee, or in my case, pee a little. (I had just gotten done telling my husband that the bathroom floor seemed really slippery tonight... like someone put some pledge wax on it. And as Vicki was heading into the bathroom, I said, 'walk slow Vicki, careful its slippy'.. and no sooner did I say that did Vicki's feet slide out from under her and she took a graceful fall to the ground from an episode right out of Abbot and Costello or one of those shows...) After I helped Vicki up off the floor and made sure she was ok, she started laughing. And I started laughing. And we couldn't stop. These are the kinds of things I want my kids to remember.

Everybody deals with grief differently. And it seems like our nation has to grieve a lot together. I think about the way so many families lives changed back in December. As I was gleefully getting ready for Christmas with my kids, another family was burying their child. And I think about how mass tragedies like this one today affect people and bring people together and we discover heroes all around us.  And then I think about how small scale tragedies affect families everyday as well. Someone loses a child to cancer. Someone dies in a car accident.

Death is all around us. Sadness is all around us. Grief is all around us.
And it is shitty.

But I also never want to forget that life is all around us too. Life is here. Life is now. Life is what you make it. We can let the hands we are dealt in life make or break us. Today I cleaned up some shit, and maybe I will again tomorrow. I hope I get the chance.

Live. Love. Pray. Repeat.

Our Father, Who art in Heaven, Hallowed be thy name. Thy kingdom come. Thy will be done. On Earth as it is in Heaven. Give us this day. Our daily bread. And forgive us our trespasses. As we forgive those who trespass against us. And lead us not into temptation. But deliver us from evil. Amen.

Day 14. Year 3.

Sorry.
I just really needed some sleep.
This weekend was a doozy.  I crashed last night at 10 o'clock.

Anytime one of the kids has a birthday, I feel all nostalgic... I end up digging up a few old pictures and reminiscing about times past. It made me think about how memories are an interesting phenomena... I wonder how accurate my memories are. It's interesting to me how a picture can conjure up so many emotions. And how those emotions can change from year to year.

At each juncture in my life and in my kids lives... I see things differently. I look at how autism has affected my memories as well.

When the kids were young... Joey at age 5, Vicki at age 3, Ally as a newborn... I look back at the pictures... what stands out at me? What emotions come rushing back? Is it the awe and wonder at new life? Discovering all of their new firsts? Experiencing life through the eyes of a child?

Or do I feel all of the stress? And the heartache? And the complete exhaustion?

I guess it changes for me on any given day. And sometimes I think my memories play tricks on me. Am I actually remembering what happened? Or am I remembering what I wanted to happen? Do I think about certain instances and moments that transform who we are and the paths we take with clarity? Or does it ebb and flow and change? Are memories something concrete to hold on to?

I have probably told this story before... but at one point... I think Vicki was 4 or 5... We had an appointment with a pretty well know psychologist. I think he was a psychologist. I can't remember. :)
Anyway... part of the prep work was to put together a compilation of Vicki's first 3 years of her life... in video form, picture form and written form.

I am somewhat of a crazy note taker. I have calendars full of the kids 'firsts' and such... And I remember, at least I think I remember, how difficult it was to draw on my memories of Vicki's first 3 years. And at the time it hadn't been that long ago. There must be aspects of our mind that try to protect us from pain. Because, even though I knew there were things about Vicki that weren't on track and that were different... when I would look back on her calendars, I was hard pressed to find them. I saw her first laughs and her first smiles and the first steps she took. I didn't see the isolation, the withdrawal, the tantrums, the lack of interaction. I dug through video after video after video. I did find a few things, but on the whole... I found smiling, happy faces.

If you think about it. Bad things happen all of the time. But in the middle of a tantrum, my first reaction was not to reach for the video camera. I was just trying to get through the tantrum the best that I could. I didn't want to remember it. So if you don't video it, or take pictures of it or write about it, then it didn't happen, right?

When I look at a picture, what is the first thing that I feel when I transport myself back to that place and time? As much as I can remember the sadness or the hurt or the sheer desperation of an experience... I find myself pushing that down and remembering the love. A coping mechanism I guess. Was that vacation as idealistic as I remember now? Probably not. If I try really hard I can remember how stressful it was, how anguished I felt. How hopeless things may have seemed at any given instant.

I guess our lives are made up of many different snapshots. The good, the bad, the ugly. The happy, the sad, the excitement, the despair. It all makes us what and who we are today. It's just interesting to me how I choose to remember it and how I choose to remember autism. It's odd to me, sometimes I can look at a picture and all I see is autism. Other times I look at a picture and autism is not there. Vicki is always there though. And that's what I have to remember.

xoxo

Day 13. Year 3.

I heard 'Ironic' by Alanis Morissette today... and I started to think about the some of the irony in Vicki's autism.

Isn't it ironic... don't you think...?
That Vicki is a young girl with very few spoken words who usually gets her point across very well... and her mommy... well... is a nearing middle aged young woman ;)  with way too many spoken and written words who hardly ever gets her point across (and hardly ever finishes a thought or a sentence.)

I was thinking about this a lot today. Vicki continues to increase her receptive and expressive word banks but still usually doesn't speak more than 2 or 3 words at a time and uses very few sentences. Of course we continue to work on this in all of her therapies and school. But one of the things I find amazing, is how many different ways Vicki can now describe things to us. If we don't understand what she means the first time, you can see the wheels turning and she will try to use a different word. I think that is an amazing skill.

I was just noticing some of her phrases today more than usual, and  thought you might like to hear some.

• When she wants me to get up from sitting on the side of her bed in the morning... Mom. Get. Git. Mom. Go. Mom. Stand up. Mom. Walk. Get.
• When she was describing what she wanted for lunch today.... Tuna. Tuna Fish. Mom. Cut. Celery. Cut. Onion. May-oh-nase. Mix. Tortilla. Lunch.
• When we are sitting in the van and getting ready to leave somewhere but haven't started moving yet... Dad. Wheels. Car. Wheels. This way (and points).
• When she's trying to tell me what movie she wants to watch. Wreck-It Ralph. (and I will look at her and say something like... we just watched that) and she will say Something different. Princess Sing-A-Long (which we've also been watching too much). I look at her and then she says. Strawberry Shortcake. (and smiles a little sneaky smile at me. She knows I won't say no to this... because we haven't watched Strawberry Shortcake in forever.)
• When she's asking to go out for dinner and I tell her no, not today... Sunday. Car. Wheels. Restaurant. Dinner. Yes. Tomorrow.
• She knew I had caved and ordered pizza for tonight... and she said... Dinner. Timer. (she wanted to know how long she had to wait.) Papa Johns. Pizza. Brown Door. Mom. Walking. (our front door is brown. She knew pizza was going to be delivered for dinner... soon. This was the first time she's ever said 'Brown Door. Mom. Walking' :)  I thought that was cool.
• For dessert tonight she knew we were having pine-e-apple. (She's been loving holding it for a few days now!)  And Vicki knows that I have no idea how to cut up a whole pineapple. :)Dessert. Cut. Pineapple. Pine-e-apple. Dad. Walking. Cut. Knife. Dad. Pineapple. (But then my husband and I got nervous... because she ran into the kitchen really fast and started to grab a big knife to cut the pineapple with. The same knife that she cut her hand with on the pumpkin a year and a half ago. It's so hard. Vicki is so quick. And if there is anything out in the kitchen, she goes for it, touches it, smells it, picks it up, before you almost get a chance to get to her. I don't know how many times a day I say things like Vicki. Hands down. No touching. Wait.)
• Oh, and then tonight at bedtime, I don't remember if I told you that I used to tickle her in kind of an odd way... I used to move my head back and forth quickly kind of by her belly... anyway... it's hard to explain, but she would giggle and giggle and giggle. And when I would stop shaking my head from side to side, she would look at me and say Mommy wiggle. Mommy. And she would smile. And then I would wiggle.. And she would squeal with delight. She did that tonight.. She must have wanted tickled and she remembered that... As I am going to leave her room she says, 'Mommy wiggle.. So sometimes to get Vicki to say more and describe things in greater detail I will feign ignorance. So I started to dance and wiggle. I knew that's not what she wanted me to do. And she says, No. Mommy. Wiggle. And then she adds Right here. And she points to her belly. So I kneel down by her bed and she brings my head to her belly and shakes my head back and forth with her hands. And she giggles and giggles and giggles. And when she has decided she giggled enough she says. Mommy. Walking. Door. I love you. Get. Git. Some of the best conversations EVER! :)

And... isn't it ironic...you know I really do think...?
That some of the very same reasons that I hate autism are some of the very same traits/habits of Vicki that make me smile.

For example. I hate some of the rigidity that binds Vicki to certain schedules and ways of doing things. Yet I find comfort in some of those very same routines and schedules.

I hate autism for making Vicki miss so many little things that happen in friendships and life as you grow up. Yet, I find comfort in the thought that Vicki doesn't have to put up with some of that pre-teenage girl shit and cattiness that I see that Ally is already going through.

I hate autism for limiting Vicki's language. But I have learned to appreciate every new word as if it were her first words. In a way, they are. Over and over again.

I hate autism for making me reach down into the deepest parts of my being, but I am glad that I have been able to find some things within me that have been, hopefully, able to help Vicki.


Well life has a funny way of sneaking up on you
When you think everything's okay and everything's going right
And life has a funny way of helping you out when
You think everything's gone wrong and everything blows up
In your face
Isn't it ironic....?

xoxo