Day 29.

Wow. I'm starting to get a little nervous about ending my blog... I've gotten very used to sitting up at night and journaling. I feel a little like Sue Sylvester from Glee. Only not really. :P

We did a lot of driving again today. And my good friend the portable DVD player was on high alert.. It was a little harder today. I'm sure all of the kids are tired of driving, and just plain tired. It was harder for Vicki to wait today too. At one point she said clear as day, 'can we go out for dinner?' I love hearing her say that. What a great sentence... she heard Ally ask it one time, and now it's her go to phrase when she's hungry in the car. But we couldn't do it right then. Because the kids had just eaten lunch about an hour before. So I showed her her schedule and it said lunch, reading, tv, dinner...  and she had technically already looked at a book and also watched a movie. So the next thing on her schedule was dinner. (I guess i should think about adding multiple tv's to show multiple videos...) I was able to get her mind off of dinner for a while, but it's like an internal clock goes off at the time when she thinks it's time for dinner. And there is no redirecting her then. She just keeps talking about dinner and talking about dinner... (Tonight it was Vicki. Dinner. Pizza. Yes. Time for dinner. 9 minutes. Pizza. Yes.) I guess she wanted pizza... but, and I was proud of myself for this, and proud of Vicki for this, I got her to understand that we were eating things I had packed in the car tonight for dinner... peanut butter and jelly tacos as she calls them (rolled up in a soft tortilla shell), squeezy yogert and grapes.

I have to say that one of my biggest concerns right now with Vicki is food. And how much she is fixated on it. And I also know that I've used her love of food to try to teach her things. Because food is a high motivator for her now.

I know I've said this before, heck, I may have already posted what I am about to say... (So sorry if this is a redo...) Vicki loves food. And we've used food for multiple functions. We've used food to get her to interact with us. (ie... helping out in the kitchen, putting away groceries, following directions...) We've used food to get her to communicate with us. (ie... by making her use full sentences when requesting food items, and always trying to incorporate more language and more learning into the situation... ie... how many meatballs do you want? one-two-free-free-meatballs... ) We've used food so she can socially interact with her peers (ie...sitting with others at lunch and in the summer taking a cooking class - of course she needs a 1:1 to assist her, but she loved the class so much and she was really good at it. I can't wait for her to do it again this summer!) We've used food to help her make choices (ie... by having her make her school lunch choices). We've used food as a reinforcer (to help reinforce positive behavior, especially when Vic is having trouble with something,  and if it's a very hard task, although we do try to fade from food to social praise quickly).  And Vicki loves food. She loves her veggies and fruits. She loves Italian and Mexican. She loves sweet, salty, crunchy, chewy, sour, hot and spicy foods. (She loves it all, with the exception, apparently, of communion hosts... we are one week out from her First Holy Communion and we are working hard with her visual strip I made her, and her first and then... first host, then chocolate rocks... yes... it seems wrong to do it like that... but we are slowly getting it... )
And I've had a lot of people tell me that they love to watch Vicki eat. And, honestly, so do I.  I love watching how she puckers her mouth up when she licks a lemon. I love how she sucks her air in when she tastes something spicy. I love it when she blows on her food because it's hot. (She'll repeat, 'Vicki. Blow. Hot.') I love how she'll tell me about what she ate at school... (especially when she says, 'carrots, dip, celery, dip, broccoli, dip...)  I love how excited she gets when we tell her we are going to Applebees.  She loves Ratatouille and Cloudy with a Chance of Meatballs. She loves Man vs Food and other cooking shows. She loves cookbooks of all kinds and my Taste of Home magazines. Her favorite play-doh accessories are her pasta maker and her ice cream maker.

And as much as I love her interactions and her connection to the world because of food, I am scared too. I am scared because she doesn't seem to have an off button programmed within her right now. She doesn't seem to get full, or if she does, she doesn't stop herself. She doesn't seem to understand that she doesn't have to eat EVERY single thing on her plate. She doesn't seem to understand when we go out to dinner that what she orders is what she gets and nothing else... But of course, we perpetuate it. Because if she asks for a bite of meat, we reinforce her by giving her a bite of meat, sometimes.  It can sometimes be a challenge to say no to her. Although we do say no. (But my initial reaction is to give her what she wants, because it's great to hear her voice, and it's great when she asks for something correctly.)  But I watch. I watch her closely. And I watch the types of food we give her and her portion size. And I get scared. I know that her appetite has increase lately, as has her weight. Thankfully her height has too... But there will be a time when she stops growing up. And I don't want her to grow out. I know this is going to sound very vain of me, but I'm going to say it anyway.  Of course I want her to be healthy. Of course I want her to be able to make good choices. Of course I want her to be able to balance her food intake with adequate exercise. Of course I want her to be able to stop herself when she is full. But here's the vain part. And I really hate admitting this. I know I am her mommy, and I am a bit biased.  But I think Vic is beautiful. Both inside and out. And I know this isn't how the world is 'supposed' to work. But I've always felt that it has never hurt Vicki, being pretty. In fact, sometimes I think people gravitate to her because she is pretty. When we go out, so many people still stop and stare at her hair. And older women come up and touch her hair. And people ask me if I put her hair in curlers at night to get it that curly... (Um... NO!) I couldn't imagine that! And when Vicki smiles, she lights up the room. I don't want. I don't want people to shy away from her. I don't want people to not interact with her. I don't want people to not want to work with her because she is too big to handle when she has a behavior that gets out of control.

And I'm scared because Vicki gets so mad. So much of the time, it doesn't seem like the amount she is eating, satisfies her hunger. And she gets mad. And she keeps asking for more food. I am trying really hard to create good eating habits for her and have her eat the right things. About a year ago, we took away a lot of her sugary juice drinks and replaced them with water. That was huge! She drinks water every night for dinner now and never asks for anything else... But she is always asking for food.

Along those same lines, trying to get her to adequately exercise has been a challenge. Santa brought the kids a wii for christmas. And every once in a while we can get Vicki to do a short run. But it takes everything we have to motivate her. And we've tried a few of the other programs on the wii, but it takes at least 2 people to help her move her body for the specific functions. We do have 'exercise' on her schedule. And she can do upwards of 120 sit ups at a time. :P  Woo hoo!!!! And we try to do some balance and coordination stuff. Ball work. Jumping on the trampoline. etc... But after a minute or two. That's it. And it is seriously hard to motivate someone who does not want to be motivated. We continue to work with special olympics to get her involved in sports. She likes to run, but not for very long or for very far. She's enjoyed the water, but trying to get her to 'swim' a lap is very, very hard. And recently, she's been having issues in the water again and I think I've said before that she has been yelling and holding her ears a lot in the water the last few times. We may need some sort of earplugs, but I don't know how we could even make that work for her. She likes the playground and does climb on some of the equipment. But when it's just me at the playground with all the kids, it's hard. And I am so paranoid. I know i need to get over my fears, but the running away, and the being silly on equipment continue to stress me out. (Once, I think when she was 4 or so, she was climbing on the playground equipment and I was up there with her, and in one instant, she was being silly and just stepped off the ledge. It was about 4 feet up and she just fell. Bam. Right onto her bum and and back. She didn't get hurt. And I don't even think she cried, but I freaked.) And I still get worried that she'll do that again, especially when she is silly. She just lets go of the swing sometimes still and she'll just fall off backwards.

So, I continually worry about how I can help her get more exercise in a safe and fun environment and how I can help moderate her food without her temper flairing. And i know that so much of it comes from me. How I eat. How I exercise, or don't. How i react to stuff. And I'm working on it. And then I don't. And then i get scared because I know I need to be in some sort of shape to best benefit Vicki and all of my kids. And to motivate them. And set a good example. I get scared because I'm not a fast runner. What if my adrenaline doesn't just 'kick in' in a situation with Vicki? I know I need to get stronger. Because I don't need to huff and puff when I am working with a tantrum with Vicki.

I was talking with my husband the other day. And he told me how proud he was of me for committing to something and sticking with it. Granted this is only for '30 days', but still... I said I was going to do a blog for 30 days and I am. So I told my husband that maybe I should set a new 30 day goal in May. For me. Because I know I lose myself. Don't we all? I put my husband and my children above everything. Even me. Especially me. So, tune in to my 30 day blog in May, about me. (Ha ha... just kidding, about the blog, not about me...) If I spend all of the time I've devoted to writing this blog this month (for my emotional well being) on my physical well being... well, that would be awesome. :P  And that would set a good example for Vicki, and Joey and Ally at the same time... Because i don't want to keep saying, 'do as i say, not as i do...'

Day 28.

There are so many things I love about vacation. One of my favorites is that vacations tend to limit the amount of distractions that each one of us has (even though my husband and i had our computers this time, it's nice to step away from chores and to-do lists at the house). And when we limit our distractions, it makes it easier to just be in the moment, every moment with the kids. And it lets our kids be in the moment with us. Everyone eats breakfast at the same time. And it's fun. And we just do things with the kids. Not thinking the whole time we are doing things what else we should have been doing with that time. And in the process of being in the moment, we have lots of moments. Little moments. Big moments. Surprising moments. Ah haaa moments.

Let me tell you about some of the moments we had. We looked at all the little holes in the sand and watched crabs dart in and out of their holes, burrowing. (a yuck moment). We watched the dolphins swim in the sound - from our deck this morning as we were eating our cereal (a awww... moment). We collected seashells, lots and lots of seashells. And we even found 3 whole conch (I think that's what they are called) shells. (an excited moment!) And then while I was cleaning the shells later, I realized that the conch shells still had tenants in them (a freak out mommy moment!). Joey names our surprise new friends Larry, Bill and Bob.  We played mini golf and watched Ally's excitement at getting her first hole in one. We played ping pong outside and I realized I forgot how to play ping pong and Joey is really pretty good at it and Daddy is, yep, pretty competitive at it. We went swimming and I found out that Joey can do 4 front flips in a row without taking a breath. We played candy land and watched Vicki get excited as she won a game. (An amazing moment! She was able to do the color counting all by herself and she did a great job waiting her turn! It was wonderful to see how visibly proud of herself she was.) And at the same time, we were able to see a classic Ally pout. We played 'racko' and I realized that, yes indeed, I am not good at strategy/logic games... In fact, Ally whispered very loudly to me, 'mommy, next time you should listen to me.' :P

All of the moments that we had with Vicki that I would have missed. Some moments were easy to experience. Other moments were harder. When we played mini golf, we were pleasantly surprised this year. Vicki seemed to be in the moment with us. We didn't have to hold her hand every single second. She was actually watching a few of our turns. And when it was her turn, she seemed to want to participate. There were times in the past that daddy would have to hand-over-hand help Vicki with her golf club. And Vicki seemed to care less. This time, Vicki took the initiative and even tried to get the ball in the hole herself a few times. And even though she wasn't holding the club right or putting correctly, she had a lot of determination and kept trying until she figured out how to get the ball in the hole. And then tonight while we were playing board games, she has asked to go to bed after we were done with candy land. So we tucked her in and cracked the door to keep an eye on her while we played racko. After a little while, Vic came out and asked for daddy (daddy bed, Vicki bed) It was so great. She wanted to be with us. She wanted to have daddy with her. So often she just retreats into her own world, to have her actively ask to be a part of ours was tremendous. :)

But one thing about vacation that I don't like. Eventually it ends and you go back to your distractions, and your chores and your to-do lists. And somehow the to-do lists got bigger. And then you get so preoccupied with catching up that you forget all of the moments you just had. It's hard not to get overwhelmed with life. I am sitting here typing thinking about all of the things I have to do and it's stressing me out. I think that's why I tend to take a lot of pictures (of course, the caviot is that I stress out over having to organize all of the pictures I just took...) and do a lot of journaling. Because then I have those moments living on. They aren't just a fleeting memory. When i get overwhelmed I just click through some pictures, remember the emotions, the laughs, the smiles that I've tucked away, and I feel better. I never want to forget to live my life because of these moments, not in spite of them.

Each day I live
I want to be
A day to give
The best of me
I'm only one
But not alone
My finest day
Is yet unknown

I broke my heart
Fought every gain
To taste the sweet
I face the pain
I rise and fall
Yet through it all
This much remains

I want one moment in time
When I'm more than I thought I could be
When all of my dreams are a heartbeat away
And the answers are all up to me
Give me one moment in time
When I'm racing with destiny
Then in that one moment of time
I will feel
I will feel eternity

And now I need a moment to recharge my battery. Goodnight all!! xoxo

Day 27.

Sun. Sand. Sea.
Sunburned. Sandy. So exhausted.
Spring Break. :P

In last night's blog I was talking about how iffy it can be with Vicki sleeping. Let me tell you, after the jam packed, sun-filled day we had today, sleep came fairly quickly to Vic tonight. Joey and Ally were out too as soon as their heads hit their pillows. It's too bad my husband and I are both exhausted too, and it's too bad that our sunblock decided to not show up for work today. We had applied it and reapplied it. And still aloe is our dear friend tonight. My poor husband is a lobster. And with Vicki's fair skin, she got it too, on her back. :( I do love the little bit of color to her cheeks though (and the freckles that sprinkle like cinnamon across her nose). It always makes me think of Vicki as Snow White... she even dressed up like her one year for Halloween. Another year she was Little Red Riding Hood because she was really into wrapping up in blankets that year, and I had found a cute long sparkly red cape. Vicki loved wrapping up in it. She was also Dorothy from the Wizard of Oz one year, and Ally went as her Toto... Speaking of tornadoes... sending out lots of prayers and hugs to all those who were affected by the devastating tornadoes today and all month.

Back to the sun. I was so proud of Vicki today. This morning, the first thing she said when she opened her eyes was 'cereal, milk'. She knows when we go on vacation that she gets to eat cereal on the deck. And, of course, we weren't quite prepared this morning. We forgot to stop for milk last night so my husband had to get up and get some this morning. And it took a few minutes. And Vicki was mad. She kept saying, 'cereal, milk.'  Waiting is so hard. And I think for Vicki, when she knows that she is asking for something and she is using the right words (well... technically, she should be using better sentences... and I usually do ask her to say it better, and then she'll shoot back with 'can i have cereal, milk, please. ') she gets really, really frustrated when it doesn't magically materialize in front of her. And of course, I forgot the timer I usually use to help her see that, yes, I hear what she is saying, and this is how long it will take until it happens. Visuals work so well with Vicki. (And it's cute, Ally sometimes asks me to set the timer for her so she can see how long it will take for what she is waiting for too.) So I kept telling Vic that daddy went to get milk. And we would have cereal and milk soon. Then it's like she's telling herself what's going on, and comforting herself in a way. She kept repeating, 'daddy. home. soon. you have to wait. cereal. milk. wait. you have to wait. daddy.' I love listening to her thought process aloud. She has been doing so good with that lately. Even though she hasn't been asking in complete sentences, she'll use the words she thinks she should use and then if something doesn't happen immediately, she will ask it again another way. I love this! Like this morning, after we finally got our cereal and milk, she was so happy!!!! giggling and really enjoying her breakfast. BTW- Daddy goes to the store for milk and comes home with milk, donuts and beer. Yep. Never fails. Fun Daddy buys the fun food. :)  And then mean Mommy has to ration them out.

Anyway... after breakfast she asked for her schedule and she saw 'special activity' and 'pool' on it... (Special activity was the beach and picking up seashells because I didn't have a beach one printed out...) She got really excited, the jumping up and down excited that is the best thing in the world to watch. The 'real' smiles. When I watch her reaction, it makes me get excited too. Vic then asked for 'bathing suit. pool. beach. sun. bathing suit. yes. swimming.' :P  Vic has always loved the beach. She loves the sand. She loves the water. She loves the waves. She loves the wind in her face. And just this past year or so, she's been more interested in other things at the beach as well. Ally loves collecting seashells. So much. And I think Vicki has shown an interest in seashells because she copies Ally. It's so great. Watching Vicki bend over, inspect the seashells, and pick up a few and then hand them to me. I still watch her really close, 2 sea shell pieces went in her mouth today, and she got a little mouthful of sand. But, in general, she is doing much better with that. Being at the beach with 3 children is stressful enough. Being at the beach with 3 children who are not strong swimmers (well, joey does ok, but Ally needs hands on and Vicki needs hands on..) is even more stressful. And being at the beach with 3 children, 1 of whom has autism, really puts me over the top. I thank God everyday for my husband. He is amazing. Without him, I think I would literally sit at home in the house all day long with the kids and never go out to experience anything because I am too scared to do it by myself. Vicki is pretty much hand-held at the beach every moment. Daddy and her love to stand  in the water and catch the waves. I was pretty proud of myself today, Vicki was sitting in the sand, burying herself and laying down in it and I wasn't holding her hand. She did get up and I had to grasp for her speedo back to catch her once... I remember there was one time at the beach when I think I was pregnant with Ally and I had Joey and Vicki on the beach by myself. We had tagged along on a business trip with my husband and he was in a class. I was so nervous being alone with just Joey and Vicki on the beach. And Joey, at that time, still needed a lot of supervision. Well, I still supervise him now at the beach! but you know what i mean... Anyway, I was feeling like such a terrible mommy. I had seen parents use those little safety harnesses with their children in malls before... and I always told myself that i would never 'put my child on a leash'. But there I was, sitting in the sand with Joey and Vicki, and Vicki was wearing an Elmo safety harness. And I did it because I felt like I had to. I did it because I needed to be with both kids and Vicki was really good at wrangling out of my grasp, and she was really fast for such a tiny thing. And I wanted to be at the beach with my kids. And that's what made me feel comfortable with Vicki's safety. And I remember getting some of those stares... the same stares I probably gave parents myself before. And I just wanted to say to them that my daughter has autism and I felt the need for the harness to keep her safe so I could interact with both of my kids.

And I told myself that day, that everyone has a story. Everyone has a reason. Everyone has issues. And it's not fair to make assumptions. It's not fair to assume a parent is lazy. It's not fair to assume a child is just a 'bad' kid. It's not fair to assume that a child's parent doesn't know how to discipline their child. Because everyone has a story. And everyone has moments. And taking a moment out of context doesn't help anyone.
I know I've said before that so many Disney songs have double meanings for me. I'll close tonight with another one that brings tears to my eyes. Every time. I think it was about two and a half years ago, we were sitting at soccer practice and I had just gotten a cell phone upgrade and I was playing with my phone, taking pictures of the girls, and using my record a voice message setting. The girls were enjoying listening to themselves on the phone. And we were singing from The Little Mermaid that day. And I have a recording that I treasure so much. And I still listen to it to remind me of why I do the things I do everyday... Vicki's voice is so clear and amazing on that recording. And she sang it with so much feeling. And it makes me cry and gives me goosebumps every time.

But who cares?
No big deal
I want more
I wanna be where the people areI wanna see, wanna see them dancin'
Walking around on those - what do you call 'em?
Oh - feet!

Flippin' your fins, you don't get too far
Legs are required for jumping, dancing
Strolling along down a - what's that word again?
Street

Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin' free - wish I could be
Part of that world

When's it my turn?
Wouldn't I love, love to explore that world up above?Out of the sea
Wish I could be
Part of your world

Dearest Vicki. I want to give you the world. I want you to be a part of my world. I want to be a part of your world. And I want to explore it all with you. xoxo

Day 26.

I love going on car rides. It doesn't matter where we end up or what we do, the drive always brings something unexpected and fun.  I love going on car rides (notice I didn't say driving... I let my husband do that on our trips!). I feel like the like a little puppy, hanging my head out the window, wagging my tongue. (Of course sometimes I get a little car sick on curvy back roads and actually do need to stick my head out the window for a second, but even if I didn't feel sick, that would be me.) I love going on car rides for so many reasons...I love seeing this beautiful country. I love discovering hidden treasures with my husband and children. I love taking scenic pictures. And you know what I really love? I love how relaxing it is (of course, when it's not raining or snowing, because if that's the case, I am a freak about that... I swear, ever since I had kids, I get super nervous with weather conditions while driving, I honestly feel it would be in my family's best interest if I were slightly medicated during bad weather condition driving...) Anyway... as I was saying, I love how relaxing it is... I have a comfy pillow and blanket. I'm sitting next to my husband. I have my travel coffee mug. I have Bon Jovi or Queen on the CD player. And, most importantly, I have all of my children in one place, rather 'confined'. :) Because when you are driving down the road at 55 miles per hour, there's no where to go.  Because they aren't going anywhere...I can almost, kinda relax. We're just driving. And singing. And laughing. And being a family. And I am very fortunate. All 3 of my kids love to travel. And they are, generally, very well behaved on car trips. We traveled cross country last summer... over 6,000 miles, with a few 16 hour driving days... and they were amazing! I had my 'bag of tricks' - little dollar store items that I would bring out ever few hours to give them something new and exciting to do. Oh, and did I mention the portable DVD player?... a must! But I have to say, today we drove 9 hours. And we didn't turn the DVD player on until hour number 8.25. That's not too bad!!  Joey loves to read. He read over half of a Harry Potter book today. Ally loves to draw, sing, play with her stuffed animals, sleep and eat goldfish. Vicki loves to look out the window. She loves to look at her cookbooks. And she loves to listen to our Blondie CD. :)  I was just thinking today what a great place we are in with our family for road trips... And how far we have come. No diapers on the drive. And not too many stops needed along the way... probably more for mommy and daddy than the kids, courtesy of our travel mugs 'o coffee. :P 

There was a time, when we were using a very specific potty training method with Vicki, that made driving any distances difficult and rather time consuming. (Like most parents of potty training kids age..)We were timer training her, and if she didn't have to pee in the potty when we stopped, then we had to set a timer and stop every 10 minutes until she peed. For all you parents out there.... you know, it's not all that convenient all the time. In fact, kids know THE minute to ask to pee, when there is NO place to stop... And when we were timer training Vicki, sometimes we would have to stop at a fast food restaurant, and she would always want something to eat there too, and when we couldn't eat at every place, she was none too happy. One particularly bad session, we had to stop every 10 minutes for an hour and a half... I shudder at the pain of those days... She does really well now, and with her current aversion to peeing, it makes it easier to plow through and not stop. :) It also helps to have leather seats, especially when we were just beginning the potty training.

It's kind of strange... with as 'routine' as Vicki is and as strict as she wants to follow her schedule, she does amazingly well on trips. In fact, she loves them... And if we had unlimited time and money, you betcha that's what we'd do with the majority of our time. Now it's not all hearts and flowers, she does have difficulties... Some trips more than others... I remember a few years ago, when we were taking her to lots of doctors, we went to stay in a hotel for a night... and i think she associated that hotel hallway with a doctor's office hallway - they looked similar and had the same kind of feel to them. And they both had lots of doors and an elevator. Yes, that one was particularly trying. Once we got her into the hotel room, she was much better... but it was hard to convince her we weren't going to a doctor. There have also been times when we are driving rather late at night, and she is tired. And she sees that it's dark outside and we already ate our dinner, so naturally it's time for pajamas and bed. And when she makes up her mind that it's time for bed, then, it's time for bed. 'Bed. Bed. Bed time. Bed time, bed time, bed time, yay bed time! Vicki bed. Vicki pajamas. Vicki bed.' And then she will start yelling and crying. On a bad day, she will cry for upwards of an hour. :(

And her home bed time routine is very specific. Mommy and Daddy say goodnight and then we leave... I've never touched on all of the safety measure we've taken to ensure that Vicki is safe at night, but we have lots and lots in place. We've done so many things to her room, from security on her windows, to locks on her closet door, to remounting all of the electrical outlets at the top of her walls, to installing cameras, to installing a dimmer switch for her light (outside of her room...because she won't sleep without turning her light switch on.... we got the dimmer switch so the light wouldn't be so glaring since she was determined to keep the switch on at night..)  Anyway, when we are at a hotel, we can't just say goodnight and close the door.... we all stay in the same room. And we don't have all of the security measures in place. Vicki doesn't sleep much at night, in general. She's up a lot talking and singing and just laying. Which, although we don't like, isn't something that usually affects the rest of the family at home because all of our doors are shut. But when all 5 of us are in one room, after a few hours of talking and yelling and playing, it gets kind of old... And one particular incident stays in my mind... she was up yelling for so long. She was really quite inconsolable. We needed the other kids to sleep, and for that matter people in the rooms next to us... I ended up taking her for a walk outside at 3 in the morning and we ended up sitting in the car for quite a while, and she finally relaxed in her car seat. That was a long night. So we always wonder what the nights will bring when we are not in our own beds. My husband usually sleeps with her. And it's odd... we have an easier time when we are staying in hotels during little family trips than we do when we stay at our family's houses when we are visiting. And 'visiting' family isn't always easy... Someone, if not both of us, have to go to bed with her. And even though, as I think I posted last night, we can never switch off watching Vicki for a second, it is so much harder anywhere than our house.

Gosh, this ended up being a long post... sorry!!! But I had one more thing I wanted to say about car rides. Almost a year ago, we were coming home from Busch Gardens. We had had an amazing day. Everyone had a great time. And then, as the kids were getting ready to watch a movie, something happened. Something upset Vicki beyond belief. And she couldn't verbalize it. She was so upset. I've never sen her this upset in the car before. She tried to pull the DVD player off the back of my husband's seat back. She almost got it completely off and she was ready to launch it. We had to pull over, stop the car and remove the DVD player. Like I said before, sometimes when she is so far into her tantrum, it's very hard to get her back. And this one in the car was super scary. I was so glad my husband was there with us. After we removed the DVD player, it was a challenge to keep the van door shut because Vicki kept pushing the door open button before we could engage the lock system. She was thrashing around. She got her body so stiff, we couldn't get her seat belt back on her. I ended up hopping in the back and sitting on the floor for the 2 hour trip. We finally got her seat belt back on her but I had to hug her and keep her from unlatching her seat belt. She is strong. And she was so upset. And it was so hard. I was kneeling over her, hugging her so tight. Every time I tried to let her go, she would lunge to undo her seat belt and keep trying to unlock the doors. (I've had this happen 2x before when it was just me and her in the van...where she would unhook her belt and try to stand up and get out of the van. When I am driving, I would reach around to try to grab onto any part of her that I could. Even thought I knew she wasn't supposed to be able to open the doors while the car was in drive, it still freaked me out!) I remember holding her. I remember crying. I remember Joey and Ally in the back row of seats. Joey had to look away and he was sobbing so hard i thought he was going to have a full on asthma attack. I tried to reassure them that Vicki would be okay. But through the tears, it was hard. And Joey kept telling me that he was so scared that Vicki would end up hurting me, not meaning to, but he didn't want to see her hurt me, or hurt herself in the process... Those two hours were pure torture. For every single person in that car. No one should ever have to experience that. I felt helpless. It took so long to finally calm Vicki down. I felt so helpless. My babies in the backseat needed comforted too, but I had to keep my arms around Vicki. I felt so helpless, my butt had fallen asleep in the position I was in, my arms were sore, and I was emotionally drained. It pretty much sucked. And to this day, I still can't figure out what set the chain of events off... It hasn't happened to that extent since then, but when Vicki tries to get out of her seat, or if she starts yelling in the car, I can feel the atmosphere begin to change and I know everyone is thinking about that day... and hoping we don't ever have to go there again.

But you know where we will go again? Anywhere in the car. Autism does not hold our family hostage in our house. We get out there and enjoy the world around us. Engage in the world around us. And live. And love. And experiene the world around us.

I love going on car rides. And so does Vicki.

Day 25.

Spring Break. The idea of it is nice. It give me a little taste of summer. After day 1 of spring break, I've decided, I'm not ready. :P  Breaks, in general, I think, are just as hard for my kids, especially Vicki, as they are for me.  Sometimes, when we have a day off of school, it confuses the heck out of Vicki. The worst were the 'snow' days we had this winter, they were more like 'ice for a few hours' days... When we would have a 'snow' day, and Vicki would actually see the snow outside, she knew what to expect. We would go out and play in the snow. But when we had 'snow' days, where Vicki couldn't see any snow on the ground, it was much more difficult. I know that she is really starting to understand the days of the week and what happens during most days now, so when things don't go as expected, she's thrown. Today wasn't too bad. So that was good. :)  She slept in, took a long bath with her mermaid barbies, and had bacon and french toast (courtesy of pappy) this am. She did some work on the computer and loves the reinforcement of a princess drawing DVD she uses. Vicki can be echolalic. Very echolalic. And when she does this computer DVD, she tends to repeat a lot of the phrases the person talking on the DVD says after she is done with it... It's a 'learn to draw Disney princesses' DVD. It's kind of cute though. I love to hear Vicki's voice. I don't care what she says. I just love to hear her voice. And after working on the princess game, she'll echo some stuff... like... Belle means beautiful in French. or oh, look at her earrings...

I think of the curve balls that autism throws at us. Often it makes me feel sad. But it also makes me feel grateful. There are so many things that Vicki can do. I think about articles that I read, or people that I have talked to... all of the self-injurious behaviors, all of the eating issues, and the ones that get to me the most, are those children that are completely non-verbal. The mommies that have never heard their child say 'mommy' or 'i love you'. It was years for me to hear those words from Vicki. And they are music to my ears. Every time. I embrace the echolalia. I embrace the scripting. I embrace it all, because I can hear Vicki's voice. It's there. Somewhere. I've always wondered what Vicki's voice sounds like. That may seem odd, since she is 'verbal'. I'll try to explain what I mean -- she'll emulate phrases she's heard, copying the pitch and tone of the words spoken. I've always felt that her voice changes, like a chameleon changes colors. Her voice changes. She has a different cadence and tone when she counts to 100 than she does when she requests an object. Each word has it's own inflection. Each yell is different. Each cry is different. Sorry. i got off track... I'm not sure what station I'm pulling into now. :P

We played with shaving cream. A favorite of all the kids (and secretly mommy's too!) I LOVE the smell of shaving cream. Vicki loves the sensory experience of the shaving cream. She's gotten much stronger that the last time we played. I used to like it, because she would have to ask me to put more shaving cream down for her. So she was always talking. Today, she asked. I didn't answer her fast enough, so she got the shaving cream herself and pushed the nozzle. I like that fine motor manipulation! And I SHOULD like the independence, but the jury is still out on that one. :) I remember one day, a long time ago, I turned my back on her for just a second. I turned around and she had her shirt off, and a nice new shaving cream shirt in it's place. She still loves to rub the shaving cream all up her arms.

We played with the 3D chalk. Cool. But, I don't like the chalky mess it makes... Ick. She drew her princesses. She always draws princesses. But i've noticed that if I tell her what to draw, she'll do it. And she's good at it. One day I told her to add some grass and flowers to her princess picture. She did. Then I told her to add a butterfly. Then a bird. Then a bumble bee. Then a cat. And they were all great! If you just let her go and do her thing, then she'll do that thing, but if you push yourself into her world, she'll accept you. :)  It just takes perserverance.

Do you want to know what my most frequently used phrase is? 'What's Vicki doing?' If she is not directly in my line of sight. 'Joey, what's Vicki doing?' 'Looking at her cookbooks, mom. She's fine.'  If I run to the bathroom  for a second (and let the door open... ) I'll yell to Ally, 'What's Vicki doing?' 'Mom. She's taking the clothes off of Barbie. Vicki put the clothes back on her. Moommmm.' Right before Ally was born, my husband took out the partial railing we had going from the eat in area of the kitchen to the living room - it's a step down living room. He built a half wall with a pocket door. It's a heavy door. He did this so that I could nurse Ally without having to freak out about what Vicki was doing. The door was too heavy to move for a child and we had a little lock on it, so that we could all stay in the living room together. Baby gates were not Vicki proof. Gosh, I am seriously all over the place tonight. I should stop babbling! But... not quite yet... Anyway, I was talking about my favorite phrase. I worry all of the time, every moment of the day. And night. I worry. I know that more often than not, Vicki is fine. But I think that after that one time, years ago, I will never rest again, not really. I constantly monitor Vicki. All of the time. If my eyes aren't directly on her, then I am asking Joey or Ally. If their eyes aren't on her then one of the girls who works with Vicki is watching her. Vicki is never, ever left unattended. Vicki never just goes up to her room to play. Vicki never goes into the bathroom by herself. I never go the basement to do laundry when I am watching her. I never close my eyes when I am with her.

OK. One more thing. Grammie and Pappy left this morning to go back home. I think Vicki is going to miss them. Vicki never misses a beat... she noticed their bags by the door this am and the fact that they were dressed and moving around by 9! :)  She was eating her breakfast of french toast and bacon with Grammie and she started crying. Grammie looked at me. I shook my head. I don't know why she was crying. But I can guess. She didn't want them to leave. And that, is what it's all about!! Building relationships and loving unconditionally. xoxo

Day 24.

What a beautiful Easter! Did you ever notice that it seems like every Good Friday it rains and every Easter Sunday it's sunny out?  Today was a day filled with love and thankfulness, and bubbles and chalk, and sun and flowers, and egg hunts and chocolate eating, and great family and great food. This is the day that the Lord has made, let us be glad and rejoice!  

Vicki loves holidays. She claps her hands, and jumps up and down and spins around. She smiles a lot. Just in case you were wondering, she checked her schedule this morning, saw the bunny basket on it, and ran down the stairs. No shower. No problem. She loves chocolate. And she loves lollipops. And she loves marshmallows... Oh the sugar shock! I loved seeing her at the egg hunt today running around scrambling for eggs with other children her age. Even though daddy had to go in with her and help guide her, she knew what she was doing. They hid real hard-boiled eggs. :)  Fun. And grandma and pappy did an egg hunt for the kids today too. It was funny--Vicki took her basket and as Joey and Ally were hunting for eggs, she was raiding their baskets, picking up their chocolates and putting them in her basket. :)  Thatta girl! (Yes, we made her give them back...) She had her pink bunny ears and bunny necklace on almost all day today. We had on 'The King of Kings' today and tonight at bedtime Vicki said 'The Lord's Prayer Movie'. It does my heart good.

I've noticed that thinking about Jesus' death and resurrection makes me think more about my own mortality and that of my family. And what it means to sacrifice. How much am I willing to sacrifice for autism? Nothing. But I would sacrifice everything for my Vicki. My Joey. My Ally. My husband. My parents. How much do my children sacrifice because of autism? How much does my husband sacrifice? How much does Vicki sacrifice?

I feel very blessed that I still have my parents with me on this earth. How much have they sacrificed for me over the years? When they visit, I just want to soak up everything. And I feel very blessed that they could spend Easter here with us.  I treasure all of the moments. The looks. The talks. The food. :)  The little moments when I see pappy put his arm around Vicki. Or grammie coloring a page in the coloring book with Ally. Or Joey and pappy looking through the photo book I made pappy for Christmas with pictures of the kids at his camp. Or grammie just being my mommy. There are so many things I want to say. So many things I'm afraid to say. So often I want time to stand still.

Are you afraid of death? I am. I don't want this post tonight to be morbid... I just want to talk about things that I am sometimes afraid to think about or afraid to say. So i just push it aside. If I don't deal with it, then it won't happen, right? I am afraid to die. Because  if , when I die, what happens to my children? What happens to Vicki? My husband and I have gone to many workshops about guardianship, about letters of intent, about what to do as we get older and Vicki gets older.

Vicki is not a burden. No to me, not to my husband, not to her brother or sister. Not to her family. Not to her teachers. Not to her therapists. I know that. But one thing I am scared sh*tless of, is what happens when I die? I could die tomorrow or the next day, or when I am 90. But someday I will die. And what happens to Vicki then? Who will want her? Wanting her and being able to take care of her are two very different things. Will she become a burden to someone? I don't want to ever think about it, but I always think about it. I've always said that I live for what she accomplishes today. But what about tomorrow? Where will she be tomorrow? Not just physically. Not just emotionally. Not just financially. But everything. And how will anyone know what she needs? What comforts her? What scares her? What she dreams of? What she loves? Heck, I don't even know sometimes.... because she can't tell me. But I can feel it. Will someone else be able to feel it? Will someone else know that she likes the blue strip of her rainbow comforter by her head and her pink strip by her feet at bedtime? Will someone else know that she always holds her ears right before she pees? Will someone else know that she is genuinely afraid of puppets? Or that she doesn't like mushrooms on her pizza and if she gets one she will pop it in your mouth before you know it even happened. Or that she has something amazing to offer to everyone she meets.

Well, I think I'm done talking about this for tonight. Here's a part of one of my all-time favorite songs... Does this song bring back vacation bible school memories for any of you? :)  xoxo

If I were a wiggly worm
I'd thank you Lord that I could squirm
If I were a fuzzy, wuzzy bear
I'd thank you Lord for my fuzzy, wuzzy hair
If I were a crocodile
I'd thank you Lord for my great smile
But I just thank you Father for
making me, me
For you gave me a heart and you gave me a smile
You gave me Jesus and you made me your child
And I just thank you Father for making me, me
Uh-huh!!

Day 23.

Vicki's got it all in there. And I love discovering it when it comes out! This is why I want to give her every experience that I can, because I know that even if she seems like she is in her own little world, she is in there. And she is quietly observing, taking stock, paying attention. Every experience that she has builds onto the next, creating a wonderful masterpiece in her mind.

She knows exactly what is going on. Today, for example, she knew that we were going on an egg hunt. And her experiences in years past has given her the base for what to expect. So, boy, was I disappointed in myself this year... We always go to a cute little Easter egg hunt that the Jaycee's put on... it's at a park- it has lots of trees, and a hill to climb, and rocks to play on. There's a playground with swings, a slide, and one of those merry-go-round things where one kid runs around the perimeter and spins it really fast then usually jumps on and all the kids either look like they are going to fall off or get sick and I keep hoping nobody falls off and gets stepped on. The Easter Bunny makes an appearance, and there are roped off sections for the age groups to do their egg hunt. That's what she's used to. And we didn't make it to that one this year. I think it got rained out last weekend and we couldn't make the rain date. I guess it's good to try new things, different things. But for Vic, she associated 'egg hunt' with that specific egg hunt. And as we were getting in the car, she kept repeating Easter bunny eggs, basket, trees, rocks, playground. We told her it was a different egg hunt. And we actually went to one in a Giant grocery store... we'd never been to that before, and it turned out really cute... First of all, it wasn't muddy. :)  Second, we were able to pick up a few groceries that we needed. :) And third, it wasn't very busy at all. And that's always a good thing. It was great. They hid the eggs down one aisle in the grocery store. They did the 6 and under group first. And Ally was on her egg game today. She collected 46 eggs and came in first... they gave her a cute little Easter basket that had a game in it, a chocolate bunny, some jelly beans, lots of chocolate pieces and a push pop. She was super psyched. Then it was the over 6 group... The bunny was very nice to Vicki and as daddy was walking along with her, the bunny would give her suggestions and help her look for the colors. She had a really good time. And it was different. And still good. :)  Joey tied for first with another boy and he got a basket too... The bunny asked us to wait a minute and she came back with a beautiful basket for Vicki too. She was very sweet and Vicki was very happy. She counted her 15 eggs and said thank you as she was already biting a piece of her chocolate. :)  What a great experience. Then we left. And on the way to the car, although she liked this egg hunt, she knew that that's not what she thought it was... and she still kept saying trees, playground etc.... So we decided to drive down to the park where we usually go for the egg hunt. We told her the egg hunt was all finished but we could go to the playground. We weren't sure how she would respond, but we thought we'd give it a try, and it was a pretty afternoon... Surprisingly, she was ok when we got the park. She asked for the playground and she swung for a while. They even took out the merry-go-round and put teeter totters in it's place. She kept looking at it. But she didn't say anything. She just kept swinging. Phew. Massive tantrums averted. She was able to communicate what she wanted with us. She seemed happy enough and we did something different. Not bad!

It's funny. The kids were watching The Velveteen Rabbit today and Vicki was snuggling on the couch. Apparently Joey was more antsy than usual, moving around a lot, standing up a lot, etc. He'll stand up, get in front of Vicki, and just stand there and watch the movie not meaning to block her view, just being oblivious. Just being a boy. And Vicki's started telling Joey, 'Joey walking.' And Joey's still oblivious., He'll say, 'yep. Joey's walking'. And just keep standing there. :)  And then she'll repeat it. 'Joey, walking.' And then he'll say, 'yep. Joey is walking' and he'll walk around for a minute and then end up in the same place, blocking her view again. :)  Finally, Vicki starts getting irritated. And I kind of chuckle to myself and think, Vic, you need to be more direct... he's a boy, you are being to polite, just tell him, 'get the he** out of my way.' :P  I step in and tell Vic to tell Joey, 'Joey, move please. I can't see.'  So, she does, and he does. Two minutes later, he's back to his blocking position and Vic asks him again, 'Joey walking.' And his response? 'Yep. Joey's walking.' Oh kiddos... :) 

She had one of those odd, silly, scary moments this morning at breakfast.... She totally knows when she has someone nervous... She was eating her french toast too fast. Sometimes we'll block her hand and tell her to chew first and wait. Sometimes she just sticks out her tongue when she is done and says 'ahhhh'. :)  And sometimes, she will just think it's funny. Today it was one of those days... And she grabbed her Capri sun and started drinking it while laughing, before I could get it off of her, it must have gone down the wrong pipe. But she must have gotten a lot down the wrong pipe. Because I got scared. She started sputtering and choking, all the while still laughing. Then she made some other odd noises, and started coughing and burping, and it freaked me out. I wonder if I will ever feel comfortable when she eats?

Bunny duties still await me, so I must run... How is it that I think I'm so prepared and then still rush around at the last minute...?  Here's hopping (yes, I know that's hopping and not hoping... I'm in super bunny mode right now!) Vicki's ok with coming downstairs in her pj's without showering... so the kids can find their baskets first thing in the morning. It's funny how morning stuff always hinges on Vicki. The other day, Ally asked me if Vicki could get a bath first instead of her. And the answer, for the time being, since Ally still needs me to be around for her, is still no. I need to have Vicki go last so I can watch her the whole time. Sometimes I wonder though... it it really Vicki or is it me, my adherence to certain routines and schedules that I do things certain ways? I underestimate Vicki alot. I feel like Marlin from Finding Nemo, 'you think you can do these things, but you just can't Nemo...' Like last month when we were packing up for our trip to Vic's developmental pediatrician in Baltimore. If the kids are awake and I have to pack, daddy usually watches Vicki in the living room. He was gone that morning for a while, and I decided to try to take Vic up to my room with me so I could pack. It used to be that she wouldn't go up the stairs unless it was to do some therapy or to go to bed. And it just wasn't worth it to me to push it before... I would rather avert a tantrum on the stairs than try to have her go up the stairs with me. But I tried it, and she was okay with it. She sat in my room and followed the directions I gave her. It's always a learning experience for me. Autism is not an excuse. And sometimes I forget that.

I'll leave you tonight with something I came across on the interweb :)  and thought was cute...
ALL I EVER NEEDED TO KNOW ABOUT LIFE I LEARNED FROM THE EASTER BUNNY
Don’t put all of your eggs in one basket.
Walk softly and carry a big carrot.
Everyone needs a friend who is all ears.
There’s no such thing as too much candy.
All work and no play can make you a basket case.
A cute little tail attracts a lot of attention.
Everyone is entitled to a bad hare day.
Let happy thoughts multiply like rabbits.
Some body parts should be floppy.
Keep your paws off other people’s jellybeans.
Good things come in small sugar-coated packages.
The grass is always greener in someone else’s basket.
An Easter bonnet can tame even the wildest hare.
To show your true colors – you have to come out of your shell.
The best things in life are still sweet and gooey.Author Unknown

Day 22.

Another Day. Another pair of glasses. Sigh... I am very thankful for the replacement warranty; we get our money's worth out of it! I hope there's not a limit to the number of times I bring her glasses in to get replaced.
Vicki and glasses. Sometimes like oil and water. It's been a process, that's for sure. Just getting her into the eye doctor's office the first time was not the easiest of experiences. Dilating her eyes, not good. I remember one time, I can't remember why she needed eye drops, but we had to put them in her eyes twice a day. It was a few years ago and it was so bad, she fought us so hard, that she ended up with blood vessels bursting in her eyes. Just the idea of her going in for an eye exam scared me. She couldn't do a regular exam where you sit in the chair and they ask you what letters you can see. For one, she couldn't identify her letters with enough consistency to even be sure she knew the letters, let alone could see the correct letters. Vicki's been able to identify some alternate pictures, such as birthday cake or different shapes. But the last time she was at the eye doctor, she saw where the pictures were projecting from and we couldn't get her to look forward to answer the questions, she kept looking behind her to see the pictures. The eye doctor was able to get a decent reading by having Vicki look into a machine that projected a farm scene. She just has to stare at the farm and sit still long enough and not blink so they could take a picture. Easy, right? :) 

Once we had the prescription in hand the first time, I thought, phew, we did it. But it took almost a year to get her to wear her glasses consistently. We had a program we used to increase the length of time she had to wear her glasses, reinforcing her for keeping her glasses on for that entire period. It started at very short increments and she now wears them all day long. Just some days, depending on her mood, I need to watch her more closely with them. Especially if she gets angry about something, the poor glasses never have a chance. We've tried different types of frames, some 'unbreakable' ones. Yeah, not really unbreakable. Twistable. And if you twist it long enough and hard enough it will create a weak spot and snap. We were really excited when she first started wearing them consistently... she would say, 'clean glasses, please' when they were dirty. She no longer does that. :(  Phrases come and go. I hope that one comes back again soon. I liked her taking notice and seeing a cause and effect happening just by communicating.

The ladies at Wal Mart are wonderful. New glasses in less than 10 minutes. Vicki's so used to her glasses on now, that when she doesn't have them  she's constantly asking for them. I try to tell her that they are broken and need fixed. Well, things could always be worse. She only dropped them in the toilet once and flushed them. (Love our para at school - and was thankful for her lightening fast reflexes that day!) Pretty impressive.

Changing gears completely.

You know, with it being Good Friday, I've been thinking a lot about The Passion of Christ. What does it mean to be passionate? The dictionary defines passions as 'Any powerful or compelling emotion or feeling.' How can I live my life with passion? How can I assist my children in living their most passionate lives? 

When Japan's earthquake hit over a month ago, I remember sitting in front of the TV, watching the terrible scenes unfold in front of me. Seeing everyone suffering. Seeing the death and destruction. And feeling such sorrow. I remember thinking that I was so mad at myself, sitting in my warm and dry house, with clothes on my back, food in my refrigerator, clean water to drink, and my family safe and happy beside me. How could I complain about having to wash a set of sheets for Vicki's bed? Or grumble about having to get her glasses adjusted. Or one of the other millions of things that cross my mind daily. Little struggles and setbacks. Seem so trivial.

But you know what? Everyone has days when they have their own personal earthquakes. Cracks in the surface. Cracks beneath the surface. How do you hold it together? How do you keep that flood from washing you away? How we handle what we are given each day makes us who we are. How we bear the cross that we carry makes us who we are. Do we help other people carry their crosses? Do others help ease the burden for us? God has given me the greatest gift to allow me to hold Vicki's hand in this life; To give me a glimpse of the beauty and dignity that she displays in the face of autism. Vicki is not alone and will never be alone. Was I given Vicki so that I could guide her or so that she could guide me?

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6.

Day 21.

We have a certain circuit in our house that seems to be very temperamental. It's the circuit that has our phone on it. And we have an outlet in the kitchen on that same circuit that we plug our cell phones into, or our mixer or slow cooker into. And I feel like I have to be careful when I approach that outlet. Sometimes it seems like the way I plug the cord in directly relates to whether I trip the circuit or not. After having tripped the circuit more times that I can count, I find myself being very careful when I plug things into it. I think about it before I plug an appliance in there. I might even say a little prayer that I don't trip the circuit. But sometimes, no matter how careful I am, I hear that sound (click) and glance at the phone and the light isn't on anymore. And then I mutter to myself. Oh crap. Not again.

Right on the outlet in the kitchen are 2 little black and red push buttons in the middle of the outlet. If I trip the circuit, sometimes I can just hit those little buttons and after a second or two, the light on the phone flashes again and I am super psyched that I fixed it, and I didn't need anyone's help. And it only took a second. But then there are other times that I try those little buttons after I trip the circuit and wait. And nothing. Crap. It didn't work. So then, I have to ask my husband to reset the breaker downstairs in the basement. Because after all of these years of tripping that circuit, I still can't figure out how to reset the breaker myself.   Yep. Do see where I am going with this?

I wish. I wish. I wish. I wish. I wish I knew exactly what makes that circuit trip. What makes Vicki's circuit trip? Sometimes it seems so random. Sometimes I'm convinced I know why it tripped. I try to be careful to not do things that have lead to the circuit tripping in the past. I say a lot of prayers before certain activities. I hear certain sounds that Vicki makes, and it's like I can actually see her light go out. Why are the wires loose? Why is the connection not holding? And yes, when things happen with Vicki, it's not always at the most convenient times. And I mutter to myself. And I'm irritated. Sometimes, it's a quick fix, maybe just giving her an extra visual, using first.... then....., counting back from 5, setting the timer for a certain activity, or just giving her extra time, or extra reinforcement. And I feel super psyched. Woo hoo! But then there are times, when nothing in our bag of tricks will do the trick, and I have to ask for help, from my husband, from her teachers, from her therapists... And it takes more time and effort. And it sucks.

When that circuit is firing correctly, and doing what it needs to do on a daily basis, well, it's great. And sometimes I take it for granted. But then, I forget myself, and I don't check to make sure everything is working, and I come home to find our dinner for the evening, still cold, just sitting in that slow cooker. That blows. Now I have to scramble around to find something else that will do in a pinch.

Why can't I just replace the bad wires? Why can't I find the best, strongest, duct tape in the world?  Why can't I hire an electrician that will solve the problem. Now, in no way, am I trying to say that Vicki needs fixed. I love her unconditionally just the way she is. And because of receiving this wonderful gift of this beautiful little girl, I am a better person. Vicki has taught me just as much if not more about life than I have taught her. I just want to make things easier for her. I don't want to see her hurting or in pain, I don't want every damn thing to be so challenging for her.

I think about this a lot. What makes one day so good, and the next day so bad? And for that matter, what makes 1 hour so good and the next hour so bad? Why do things have to cycle so much? Why can't she gain a skill and have it be in her repertoire forever? Why do we have to constantly revisit things, day after day, year after year? Oh I know things take time, but sometimes I don't want want to wait. I want it now. I want it yesterday. It's taking too long. She's getting so much older. Believe me, I celebrate her successes everyday and I am so thankful. And I am so selfish. But if I'm not selfish in what I want for my daughter, who will be? I want it all for her. I want it all for all of my kids. Doesn't every parent?

And I get so jealous sometimes too..hasI really get mad at myself for that. I'm sure you've heard, 'If you meet one child with autism, then you have met one child with autism.' And I never want to compare. I don't want to compare Vicki to Joey, or Vicki to Ally, or Vicki to any other child- one with autism or one without. But, I don't think I would be human if things didn't cross my mind (at least that's what i tell myself to make me feel better...) I'll hear about someone being able to read, or participate in a typical classroom with minimal support, or be in an activity that doesn't require them to have a 1:1 to be able to participate in it. I'll see another child be able to walk next to their mother without holding their mother's hand the whole time, who is able to transition from one activity to another without any problems, who can play with and interact with their peers, who can be left alone in a room for a minute or two. And I know that each person  has their own story. Each person has their own struggles. Sorry, I don't know where I'm going with this. :)  I just kind of meandered. I like that word. :P 

I also liked so many things that Vicki did today. Wow. When Vicki is happy, my whole world is brighter. When Vicki smiles, my heart smiles. When Vicki sings, my heart soars. When Vicki is 'on', wow. She talks so clear. She verbalizes so well. She was jumping up and down and smiling when we were singing her calendar song today... (to the tune of The Adams Family --- Days of the week, clap, clap, days of the week, clap, clap, days of the week, days of the week, days of the week, clap, clap. There's Sunday and there's Monday. There's Tuesday and there's Wednesday, there's Thursday and there's Friday, and then there's Saturday.)  She flew through her homework and when we were 'reading' her bag book, she really seemed interested. She was tracking the print with my finger. And after prompting the first few times, she was looking for the words dog and cat and she looked so proud when we got to those words and she got them right!!! And she would say the words, 'I' and 'a' each time she saw those words when I pointed. This was huge today! To recognize the words dog and cat after seeing them 4-5 times in the story. Now she probably won't get them right the next time she sees them, but for today, I will take it!!!  We had a lot of places to go after school today too.. we took Ally to dance, and then dropped Joey off at soccer, and then went back to pick Ally up at dance, and I would say a little prayer in the car each time we were getting out. And she did really well. :)  And she knew she did well. Because in the car on the way home, she kept saying, 'Vicki home. brownie. chocolate. yummy. brownie. '  (Now, she never forgets a thing! If you remember, no brownie for her last night... I knew that she would want some today. So this morning before we left for school, I made another pan of brownies to have for later... because those boy scouts devoured those brownies last night. They were ooooy, gooey, chocolate pieces of pure yumminess. And she was happy. Not a peep out of her tonight after she went to bed. :)  She finally got her brownie. Good for you Vicki. Oh, and she said grandma and pappy's name tonight while they were sitting near her. Clear as a bell. I think she was just happy to have them near her. She didn't want anything. Just them to be there and smile at her. :)  At bedtime tonight, she went through her day so clearly. And she even inserted grandma and pappy's name in her day, and she inserted Joey's soccer practice (I hadn't put a visual up for that because I didn't realize we'd have to take him.) So that's great. She added things, gave me more information than she visualized on her schedule. Great job!!

I am beat. I guess a trip to DC today with Joey's 5th grade class will do that! I had a lot of fun at the Museum of Natural History; and I learned a lot from those boys. :P  It's great to forget about everything and just concentrate on the dinosaurs, the mammals, the oceans, the gems, the bones, and the history. I am really glad I got a chance to go. I was worried being gone so far for so long... But I think Joey needed this. I have never been on a field trip with him. Ever. And he seemed very happy that I went. He even asked me to sit with him on the bus. :)  I'll take that! And I think he was really glad that I wore the boy scout pins he pinned on me last night at his ceremony. Thanks Joey.

Since I was talking a lot about circuits tonight... I'll leave you with a song that shows my age...  although I think I watched it mostly in reruns. :)

HEY YOU GUYS!
We're gonna turn it on.
We're gonna bring you the power
We're gonna light up the dark of night like the brightest day in a whole new way
We're gonna turn it on we're gonna bring you the power
It's coming down the lines, strong as they can be
Through the courtesy of The Electric Company
The Electric Company.
The Electric Company!

Day 20.

Up. Down. Up. Down. Up. Down. Yep. That's me.

It's exhausting. Following my train of thought. (I'm exhausted just trying to type it.) Here's an example:

As I'm typing 'up, down, up, down, up, down,' I start thinking about what my feelings would look like graphed. And then I think, would that be a sine wave? Would that be a cosine wave? What's that other wave? Tangent? What's the difference? I think I'll google that. (sine waves vs cosine waves. images.) Nope. I'm done with that. I'll just think 'wavey' in my head.

Then I type out 'That's me.' And I think, what song am I thinking about now? Oh, yes, that Laurie Berkner song.  Oh this is me, this is me. This is me and my energy. This is me, this is me. This is me and my energy. I'm I'm gonna clap my hands. I'm gonna shake my head. I'm gonna yell out loud. Because I have energy. Oh this is me, this is me. This is me and my energy. And it's the only thing That I can be. Yeah I'm the only thing That I can be. Me - Me - Energy. Me - Me - Energy.  Energy. I could use some of that.

For any of you that have kids, or are around kids, or are a kid at heart... if you've never checked out The Laurie Berkner Band, you should google it. :)  Out of all the kids CDs we've listened to, hers are, by far, my favorite. The songs are catchy. I even like to listen to her CDs when the kids arent' in the car with me. :)  I have a soft spot in my heart for her songs too... When Vicki was around 4 years old we listened to her songs all the time. One of our favorites to sing back then was 'moon, moon, moon.' and I remember that I loved those few minutes with Vic because Vicki was in the moment with me. She wasn't talking much yet, but she could fill in the blanks with her songs... and there was one part where the lyrics say, 'look up, it's the moon, look up it's the moon, look up it's the moon up in the sky...' and Vicki would look up at the ceiling and with my help she would point upwards and smile. So many of her songs bring back wonderful memories for me. She has a song called, 'we are the dinosaurs, marching, marching... ' and Joey and Vicki would stomp around the room and Joey would make dinosaur sounds to Vicki and she would giggle. Then there was a song, goodnight... and Vicki would repeat the sounds of the animals for this lullaby.
I'm a little frog and my Daddy loves me . I'm a little frog and my Mommy loves me.
And when they tuck me in to say goodnight...They say "ribbit ribbit ribbit"
Goodnight . Goodnight goodnight goodnight little frog
Goodnight. Goodnight goodnight "ribbit ribbit ribbit" Goodnight.
And one of the first times I ever heard Vicki say the words 'I love you' was when she was singing one of her songs. And I'm kicking myself right now. I remember where we were when Vicki was singing it (we were staying in a hotel room when we were in Bethesda doing auditory therapy). And I heard her say the words and I cried. And cried. And cried. I held her in my arms as she was going to sleep and the next day I wrote an email to Laurie Berkner thanking her. And now I can't remember the words to that song. I feel like a crappy mom.

Up. Down. Up. Down.
Up-I volunteered in Ally's classroom today and we hid the eggs for the kindergartners egg hunt. :)  Loved seeing how excited the kids were. So cute!  Also up- I then got to help the kids with glitter on their tissue paper eggs. Glitter! Woo hoo! 
Down - I got a splinter in my finger yesterday while working on the bar refinishing. And it's right where I bend at the knuckle. And it's swollen. And it hurts when I type. :( 
Up- my parents came to visit today from PA.
Down - I think the drive is getting really hard for them to make. They look exhausted.
Up- When Vicki's para told Vicki that grandma and pappy were waiting for her in the car at car riders, she clapped her hands and jumped up and down for joy. :)  LOVE it!  Just a year ago, she would run and hide under her blanket and plug her ears and close her eyes. It might take an hour to get her off of the couch. She would even walk with her eyes closed so she didn't have to open them and make eye contact.
Down- ouch. My splinter really hurts.
Up- it was horseback riding day and Vicki looked really excited to ride.
Down- she was teary eyed during the riding lesson and seemed to have a hard time, there was another lesson going on in the barn at the same time, and it was louder than usual. Who knows.
Up- she peed on the potty... she hasn't been wanting to go potty at hb riding lessons the last few weeks. Thank goodness for Ally's jelly beans from her egg hunt. Oh, and this was good... there was one of those toilet bowl cleaners that when you flush it, the bowl water turns blue. Vic looked at it strangely, but sat down and peed anyway. :)  That was awesome!!!
Down- now we have to go to Ally's soccer game and my car thermometer reader was reading 92 degrees.
Up- Ally scored the first goal of the game on the first drive. And the parking lot was very close to the field so grandma and pappy watched from the car, as did Vicki for a while. She was very content drawing and coloring. But of course, we were there to cheer on Ally, so eventually with 1 quarter to go.. I had Joey and Vicki come out on the sidelines to cheer Ally on.
Down- Vicki was fine the first few minutes. Then there goes the technology stuff again. She's mad. And she gave a little toss to my phone and then leaned in towards Ally to what I thought, was to give her a hair hug. But then she pulled the sparkly yellow headband out of Ally's hair and Ally asked for it back and Vicki said, no mine. Back and forth. I love it when they sound like 2 sisters arguing. :)  But then Vic wouldn't give the headband back to Ally. I was so nervous that Vic was going to snap it in two. We finally got it off of her, in one piece, but Vic was mad. Then Joey came closer to Vicki and wham - she kicked him in the gut. I was so proud of Joey, he didn't really react to it. And Vic kept saying 'Joey crying.' Then Joey looked at her and he said, 'no, joey's not crying.' And Vic got even madder. After redirecting her with making bee sounds and counting blades of grass, she seemed a little better. But she was in one of her indecisive moods. She said, 'home. yes home. no home. (whine) no home. I wish I knew what she wanted. I wish she knew what she wanted.
Up - After the game, we picked daddy up and went' to Joey's court of honor for boy scouts. She walked into the building, carrying the brownies I ended up making for our snack requirement and had her cookbook in her hand. Pretty proud of her. This is new.
Down- I found something that I excel at. If you want to know 'what not to do for behavior management', just look at me. You'd think after almost 9 years, I'd know some things. But, no. The same things stress me out. Ugg... i should have prepared a bit more for the ceremony. I didn't realize how quiet it would be. And how formal it would be. And how almost no one in the place had ever met me, let alone Vicki, and not many people there knew that she has autism. So here come the looks. The guy in front of us kept looking back. Vicki was looking at her cookbook and she was in her 'silly mode'. Not the best mode to be in for a quiet, formal, ceremony. She was throwing her head back and laughing. And I know better. I know she feeds off of my reactions. And I'm sure it was obvious to her that I was nervous. So that just made her vocalizations and her laughing louder. And the guy in front of us, kept turning around, probably every 10 seconds or so. So my husband finally took her out of the room. Not because of the guys looks, or the scout master's looks of disapproval. But because of me. I miss cub scouts. I was really upset tonight. Vicki wanted a brownie. No brownie tonight. She's mad at me.
She usually talks about what she did durning the day at bedtime. Tonight she opened her mouth to say, 'i want it... ' that's how she sometimes starts her list of things she did... But tonight, she opened her mouth and clamped it shut and said 'no schedule, no food'. She's mad and doesn't want to talk to me. Because we wouldn't give her a brownie. Because she didn't listen. She looked at me and said, 'door. mommy. go'. Funny how those three words can make me so happy and so sad all at the same time. Happy because she is expressing her anger. Sad because I always wonder, does she really know what she shouldn't be doing? Sometimes I think so, sometimes I don't. Tonight I did. So no brownie.
I'll tell you what. This was a crazy, busy, packed day for all of us. And looking back on it now, eh... not so bad, really... I was grumpy and sleepy by bedtime too. And I was bashful at scouts. And, lets see. sneezy at the barn. Happy. Yes.  Doc - does giving Vic her medicine count? Lets see... 1, 2, 3, 4, 5, 6... what's the last one?   Funny, how everything goes back to music. I love it when Vicki sings, 'someday my prince will come...' Here's hoping all of your wishes come true Vicki. Keep dreaming. Even about brownies. xoxo

Day 19.

Vicki is so smart. She never stops surprising me. Oh what I would give to hear what she is thinking and the dialogue she has running through her mind! I bet it's phenomenal. This morning as she was getting ready for school... (we hadn't talked about what day of the week today was), she looked right at me and said, 'PE, apple juice, lunch.' And she was right... today was PE day. :)  Smart cookie. So, I guess she was looking forward to PE and lunch! Speaking of cookie, some days when she is telling me about her day, she says that she had a cookie at lunch. And then I ask her what kind? And she'll tell me chocolate chip or m and m or another type of cookie... And then I'll ask her how many cookies she had. And she'll say, 1-2-3-4-5. (Boy do I hope they were the miniature cookies!). I guess I should have asked her if they were big or little. She's starting to be pretty good with that attribute, especially if she can see something that is both big and little together. Anyway.... I do like to look for that silver lining, and here's one about Vicki... She doesn't lie. If she snuck an extra cookie, and knew that she snuck an extra cookie, when I ask her how many cookies she ate, she'll tell me the truth. Because the truth is concrete. The truth is what happened. It's nice not to have to sift through little white lies.

If I had to rate my days, I would say today was a fairly easy autism day. And then I feel guilty for saying that. Because it was 'easy' for the most part, because I chose to make it easy. (Oh, if only... I could always choose to make it easy.) I made it easy because I chose to ignore the piles upon piles of stuff I had to do. Notes I have to write. Appointments I have to schedule. Filing I have to do. Laminating I have to do. Research I have to do. Websites I should check out. Seminars I should sign up for. Blah. Blah. Blah. So, what did I do today while the kids were in school? Nothing that had to do with autism. I was working on the bar that my husband sat in the middle of our dining room last night. My hands are tired from scrubbing and polishing and refinishing. But it felt so good to do something different. Then I rearranged the furniture. And rearranged it again until I found something I liked for the dining room and office. With the mood I was in today, had I not run out of time, I probably would have gone and bought some paint to paint the kitchen.  And when Vic got home from school, it was an easy autism evening as well. And I feel guilty about that too... Ally's dance class was cancelled, so we could just hang out at home. Vic did her homework and calendar with me, and then I let her relax. I guess it's good to not have every second of every day planned out. But if I'm not doing something expressly with her, then I feel like I am being lazy. It's a minute or an hour that I lost out on a teaching opportunity with her, and I won't be able to get that hour back. Yes, I know that sounds dumb. I am her mom and I really do cherish every mommy moment I have with her too. But every minute she just keeps getting older and the bridge between where she is and where her peers are keeps widening. And then I blame myself. For not doing enough.

But.... I also know that those unscheduled moments can bring you something so beautiful it takes your breath away and before you know it tears are running down your cheek and you want to freeze time. Make it stand still for that one moment. (So, of course, I do the next best thing and grab my camera. :P )  What was that moment? Vicki asked Ally for Ally's new doll she got for her birthday. It's a little girl with brown hair and a ponytail. She said, 'Girl. Vicki. Please. Vicki.'  After we cleaned up her sentence a bit, and she asked Ally again, (and Ally said yes... wow!) Vicki took the doll and laid on the couch with her. She covered her up with her blanket and put her head on the pillow. She snuggled up with the doll and put her arm around it. She touched the doll's hair lovingly and tried to feed her a plastic egg. And she made the eating sounds that you make while pretend playing to eat. She kept looking at the doll and smiling. And then she started singing to it. It seemed like such a normal thing to do. Play mommy and little girl. But it was extraordinary.

We have one of those magnets on our fridge that has a bunch of cartoon faces on it... and you can move the little frame over the face that expresses what you are feeling... My boys tend to change the frame for me all the time. When Joey changes the frame for me, it ends up on either exhausted or overwhelmed (he knows me so well); when my husband changes the frame for me, it ends up on lovestruck (he knows me so well). :P But when I look at that magnet, I want more frames. Because I feel more than one thing at a time.
All the time.

And I was going to talk about something else tonight too, but I choose not to. Because today was my easy autism day. And what I'm thinking about it not meant for an easy autism day.  I'll tell you about it another day.

Day 18.

I talk a lot about how it's the little things that I notice with Vicki. The little things that have the biggest impact. The little things that show me just how far Vicki has come. Let me give you another example of this in action tonight. So my husband comes home from work tonight and tells me that he's going to Borders- to pick up the shelving he bought at their store closing sale. Bear with me, I do have a point, at some point. :)  (And this is how my mind works... especially at 1 in the morning... I know what the phrase 'bear with me' means, but it's kinda funny when I think about it... I don't want a bear with me. Had that when we were hiking a few years ago. And it was quite scary. Anyway....)  So, he and a friend go to the store and pick up the bookshelves. We don't have a place cleared for them yet in the basement, so he decides to put them in our 2 car garage, which has been a 'my car garage, + a side filled with projects that we need to finish for the house'. Such as... a few sheets of drywall, and a new vanity and cabinet that are supposed to be for our master bathroom project, that we, on a whim, ripped up, almost 5, yes... f-i-v-e years ago. 5 people, 1 bath, 5 years...  We've also had an old bar sitting in the garage that my pappy had when he owned a bar in our hometown. When my grandma passed away a few years ago, we got it so we could refurbish it and put it in our dining room. It's been a great storage spot for random garage items for years...Anyway... here's the point. He decided to move the drywall into our ripped up master bath upstairs tonight, and the unfinished bar into our dining room so he can 'finish' it. The bar is 8 ft long so we had to move a lot of furniture around to get it in the house. And since the furniture is all moved around, I think I'll clean, tomorrow..., and we're going to rearrange some stuff... As we were heading up to bed, (we always say, 'bedtime, bedtime, bedtime... yay bedtime!' before we go upstairs), Vicki noticed that our house was in complete disarray. (The kids had been watching Pocahontas  in the living room). And I just told her it was 'different' tonight. She looked around a little bit, and then she accepted it and moved on. Wow!!!

You see... when things change in our house, it's not always a good thing for Vicki. I really notice it when we change decorations for different holidays and seasons... I think it was 2 Christmases ago, I had taken the Christmas decorations down one day while the kids were at school. And when she came home and saw that things were different, she was not happy. Not just an 'oh, I am sad, because it always looks so barren after the Christmas decorations get taken down. And I really liked Christmas, so now I feel let down. No. There was lots of screaming involved, and it lasted well over 2 hours. I've since learned to stretch out holidays a bit more, put things away little by little and try to keep some of her favorites out until I can get a new favorite out for the next holiday. I also show her when I take things down and I talk about how great the next holiday will be and all the fun things we will do. So, for her to see the whole downstairs in such disarray and just accept it. Well, that's pretty cool. :)

Also, along those lines, daddy was not home when it was bedtime, he was finishing up at the store. So I took the kids up to bed myself. This used to be extremely traumatic for Vicki, if we weren't altogether at bedtime. She has actually adapted quite well. When Joey goes to sleepovers now, or is at a camp out, she doesn't freak out anymore. And if my husband is working late or out of town on business she does pretty well. When she was having trouble I would put a picture of daddy on a Popsicle stick and when daddy would call to say goodnight, I would hold up the stick with daddy's face on it for her to see. Vicki still has trouble sometimes when we drop Joey off at a friends house...She'll keep saying, 'Joey car. Joey car.' after we drop him off. I remember one time, we had taken one of our cars into the shop to get worked on. We all went to the shop in one car, but I took the girls home in one car, and daddy took Joey home in the other. It was not a fun 40 minute ride home for the girls. But tonight I just told Vicki that daddy was at the store and she didn't object to bed. Little things. Big difference.

Now let me touch on Big Things. Big Differences. I haven't really mentioned everything that goes on 'behind the scenes' to make Vicki's life easier, our other children's lives easier, or mine and my husband's life easier. I don't even know what to say when I talk about the girls we have hired over the years to work at home with Vicki. I get a lump in my throat every time I think of them. These girls have no idea the full impact they have had on not just Vicki's life, but on our family's life as a whole. Some of these girls have never worked with a child with autism before, others have brought a wealth of experience with them. They are willing to come into our home and learn all about Vicki and our family. They learn strategies to help Vicki learn new things, to help Vicki communicate, to help Vicki socialize, to help Vicki play, to help Vicki help herself. To help Vicki grow and become the wonderful young person that she is. And I owe so much to these girls. It's just like when I talk about Vicki's teachers. These girls choose to come here. They choose Vicki. They choose our family. They choose to open their hearts to Vicki and they choose to love her. And Vicki loves each one of them. And we love each one of them. They are a part of our family and always will be. They are responsible for enriching Vicki's life, enriching our family's lives more than words could ever express.

I love them for wanting to come into our crazy house and be there for after school meltdowns. I love them for coming back day after day. Especially the hard days. And I love them for loving Vicki long after they have left our nest and moved on. Everyone grows up and gets thrown into the 'real world'. And it sucks. Because not only does Vicki love them and depend on them, but so do Joey and Ally and so do I. And then we have to start all over and hope we find someone else who will want to come back day after day. It's hard to have someone be a part of your family life for a few years and then graduate and move on. And it's hard to open ourselves up to someone new, and for me to relive all of the things that have gotten us to the point we are at today, the good, the bad, the scary, the sad, the happy, the mad. (Stop rhyming. I mean it. Does anyone want a peanut? Anyone, anyone? One of my favorite all time movies!)  And these girls see our family at our absolute worst and hopefully at our absolute best. They see us in our jammies on a Saturday morning. Before coffee (Yikes!) They have allowed our family to do so much that we couldn't do without them. Especially in the summer. Because of these girls we can go to the playground. We can go to the pool. We can go and ride bikes. If I didn't have one of those girls with me, I couldn't do it by myself. I remember before I was lucky enough to have these girls... I went to the pool by myself with my kids. And that day at the pool, I ended up spending $170 on a new cell phone for a stranger, because of my lightening fast reflexes. I was in one of those slow motion action sequences, and I could see something shiny, and I could hear it plop into the baby pool, I just couldn't get it. Another time I walked Joey over to the big pool for swim lessons and Vicki was playing happily in the baby pool with a fence around it. In the 30 seconds that I walked Joey over, Vicki had pooped in her diaper and had gotten naked and threw her diaper in the baby pool. Yep. I was that mom. Responsible for all of the little ones yells of protest because they had to get out of the baby pool for, i think at least a half an hour while they got it cleaned up. And then Vicki didn't understand why she had to get out, so there I was with a screaming, tantrom throwing, naked 4 year old. Yep. I need these girls more than they ever will know.  Last year at Vicki's very first dance recital ever, I was able to sit in the audience and watch both of my girls perform in the same show. When Vicki came out with the adaptive class and her teacher, I was holding the video camera, crying and shaking. I knew Vicki would be okay, because behind the curtains on both sides of the stage were 2 girls, and there was another one sitting in the seat beside me calming me down. To be able to experience that moment was unbelievable and I was able to fully experience it because of these girls. When Vicki got sick last May and was in the hospital, my husband was in Arizona for work. These wonderful girls, they came to the hospital with me.They stayed with me through test after test. They held my hand and wiped away my tears. They brought me a cup of coffee in the morning. They helped with Joey and Ally and tried to keep things normal for them.  They came to visit from grad school for the afternoon in the pouring rain to sit in the hospital room and color with Vicki. They texted me and listened to me as I cried on the phone. They came to visit while Vicki was sedated and in an MRI and brought my husband and I lunch and then sat with Vicki as she woke up.  They helped me get Vicki ready to go home. These girls truely are the wind beneath my wings. Don't ever underestimate what each one of you has brought into our lives. Thank you, thank you, thank God for you, the wind beneath my wings. xoxo

Day 17.

S*it.... S*it, s*it, s*it. Just when I get lulled into a false sense of security. Blah. Shame on me for falling asleep. With all of the excitement of Ally's birthday party yesterday, Joey getting back from boy scout camp soaked with lots of wet, muddy clothes and gear, and finishing up our taxes, I was pretty much spent tonight. I had gone into our bedroom and turned the iron on to iron for a little while... I laid down on the bed while the iron heated up, next thing I know it's an hour and a half later and my husband (who had also not been near the monitor for an hour), walked out in the hallway and his poop detector nose was beeping. I know I should be grateful it 'wasn't too bad'. But somehow tonight as I was scrubbing it, and scrubbing it off of her hands (it took 20 minutes for me to get them clean. seriously.), I just wasn't mustering up that grateful feeling. When I changed her sheets I had noticed that one of her little pillow shams that my aunt had embroidered a pretty pink princess on, was covered. It was like Vicki decided to color her dress and change it from pink to brown. Insert stupid line here... well, at least she colored and stayed in the lines really well. :(  I have to be able to crack a smile at something, right? Now that I am awake again, and up for a while doing laundry... let's change the subject...

Let me tell you about a couple good things. I was super proud of Vicki this morning. We had a meeting with the director of religious education at our church about Vicki receiving the sacrament of Holy Communion. It was something different for Vicki to do, out of the ordinary. I always hold my breath before we get her out of the van. If she doesn't want to go, she'll push the lock down on the door and start yelling. Today she jumped right out and started skipping. :)  Skipping is always a good sign.

It always helps when someone who is trying to assess something sees what/who they are trying to assess. I wasn't sure how things would go, we've had some difficulties and stumbling blocks in the past. I'm excited and very nervous with what came out of today's meeting. She's going to be receiving First Holy Communion with the whole class in a few weeks! At first they wanted to just have a stranger sit with Vicki during the mass, but we were able to convince them that that's not in the church's or Vicki's best interest for a whole multitude of reasons. So we'll be sitting with her. One of the things that Vicki, and anybody else who is receiving communion must be able to do is demonstrate her understanding of transubstantiation, whereby you believe that the bread and wine becomes the body and blood of Christ. I am thinking of doing this in pictures for Vicki. Showing a host by itself with an equals sign and showing the host again. Then, showing a host + her symbol for church and have it equal Jesus. I'm not sure how else to do it.  And what we are going to do over the next few weeks is practice having her walk, folding her hands in prayer, saying amen, sticking her tongue out, chewing and swallowing, making the sign of the cross and walking back to her seat. This is just like anything else we have to teach Vicki. Separate it into small steps. Imitate. Repeat. Repeat. Repeat. Today they tried it with mini saltine crackers. Vicki got excited. With some imitation and practice, she did it. And she liked this kind of practice. She kept saying, 'more crackers'. :P  Then they switched to an unconsecrated host. Good thing we did. On the tongue it went, and in the hand it went. Spit. Yuck. So... our next step is to find some kind of crackers that have a similar type of flavor and consistency as the wafer. We went to the store after we left, and again, Vicki did great. We found a few types of crackers in the international food aisle that might do the trick, as long as there is no salt on them. The one thing that came to my mind is a type of candy... I remember I used to get it during life guard's break at our hometown pool when I was younger... They looked like flying saucers and inside there were little balls that looked like nerd candy. The flying saucer itself reminded me a little of the texture, kind of like styrofoam. I don't know where I would find those now, our hometown poo has long since closed down.  Anyway... I am very hopeful that all will go well. It should be a beautiful, blessed day. I already got a dress for her... I knew Vic wouldn't be able to wear the little communion dresses that the girls wear. For one, she is head and shoulders taller than the girls and also much more developed. Plus, I knew that the tulle under some of the dresses would be distracting and itchy for her. So I found a cute little dress and a sweater to go over it. I am thinking of making her veil, because I know what kind of material, if any, we could get her to wear. I don't want anything big or distracting to her... We may end up with just a ribbon tied in her hair with a little princess tiara we got at the bippity bobpity boutique at Disney two years ago. I hope everything goes well that day and we can get her to sit through mass, and go through the communion line. I am nervous about her receiving it with the whole communion class, but I am also looking forward to her being part of the group. Here's hoping that having our families in town too will not be too overwhelming for Vicki. I'm cautiously optomistic that she will like all of the attention focused on her, like she did last year at her dance recital.
Matthew 19:14
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

The rest of today Vicki  was very whiny. Come to think of it, so were my other kids. I wish I were not invited to their 'come down from an exciting, tiring weekend swaree whine fest.' That makes me think of wine fests that I'd rather be at. :P  Anyway, you know how your kids each have their own unique whine style, as do I, I'm sure!!  You probably know mine by now. :P  Vicki's whine style tends to  intensify everyone else's whining. Including mine. Vicki has taken to random high pitched whiny noises. And not just every once in a while. It's every 3-5 seconds for, say, for 3 hours at a time. It can kind of get on your last nerve. I try lots of different tactics. Redirection. Telling her to use her words. Giving her choices. But sometimes, you just want to whine. And that was today.

We did go to track practice today, the weather was beautiful after all of the rain we had this weekend. She seemed happy to be running and feeling the wind on her face. She did great running the first 50 yd sprint. The next one, was more of a 50 yd daddy tugging Vicki along for the ride sprint. :)  She even tried the high jump today. She kind of ran up to the bar, stopped, looked at it, and the proceded to put one leg over it and then the other. Not sure if high jump is her thing. She didn't want to do it a second time. :)  We also went to the playground this evening and her walk/run around the perimeter must have been a highlight for Vic. She mentioned it at bedtime. She said, 'Playground. Walking. Trees.' And then smiled and said, 'and the water'. And my husband laughed. He said she almost made it into a gigantic puddle. Had that been me and my lightening fast reflexes with her, she would have. :P