Plus 7.

Welcome to 30 days with autism, the Halloween edition. (OK.. you got me. It's not Halloween anymore... but, what the heck, this is my life. I am somehow late for everything.)  People looked at me kinda funny when my kids went to to their doors today asking for candy. :P Just kidding. So many people were anxious to get rid of their leftover candy. :)  OK. Just kidding again. No one opened their doors. ;)

In all seriousness,  I partly didn't write until now because I didn't want to jinx what I was going to write about. Not sure I'm quite free and clear yet either, but the stitches are out, so I am breathing a little easier. Also, I am so tired of feeling so sad. So I am warning you that I may try to make a few stupid little jokes, but it was no joking matter when it happened. At all. With that being said, are you ready for a frightening Halloween story... full of blood and gore, a white as a ghost mummy, and a scary situation?

Here it goes. My beautiful pumpkin Vicki loves holidays. So much. She loves everything about them: the decorations, the food, the fun, and of course, the Charlie Brown specials. (Just as an aside, she loves 'It's the Great Pumpkin, Charlie Brown' and one night, my husband and I asked her what character she liked from it the best. We named a few characters and when we got to PigPen, she stopped us and said, 'PigPen. Yes' Now, Vicki can remember lines from movies very well, and she does tend to repeat phrases she likes from them quite often, and sometimes I like to see how she associates the phrases to a particular situation. So she said, 'PigPen. Yes'. And then she said, in the most perfect little imitation voice, 'How'd ya know it was me?' The cutest thing ever. :)

So, where was I. Oh, yeah. My pumpkin loves holidays, and she especially loves Halloween (and Christmas and Easter...). My kids get really excited when it is time to carve the pumpkins. But Vicki is the only one of the 3 that really, really likes to help. Joey and Ally theoretically like doing the jack-o-lanterns, but they are very content to draw their faces out on paper as their contribution to the process. But not Vicki. Maybe it's the sensory aspect of the pumpkin goo, but she loves, loves, loves to help. I'll get most of the stuff scraped off the inside of the pumpkin and then she loves putting her hands in there and pulling out all of the stringy, icky pumpkin guts. She is so good at it too, and it is a job that I don't mind giving up. :)

Everything was going so well. And then you have that split second, that split second you wish you could have back. As soon as I saw that she had a knife, I screamed. She wasn't trying to do anything, she just saw my husband carving the pumpkin and a pumpkin piece of the carving had fallen into the sink.  She just wanted to help. One thing about Vicki, she's fast. Another thing about Vicki is that she loves helping. And she copies what other people are doing, which in learning and acquisition is a plus. But in this instant it was not. Mummy turned white as a ghost. Vicki grabbed her hand. In general, I don't like blood. Especially my kids blood. It wreaks havoc with me. Another reason I love my husband and think we work so well together. He can handle blood. I cannot. I can handle poop and vomit. He cannot. That bodes well for us.

We decided to take Vicki to urgent care instead of the emergency room. I am so glad we did. The staff was amazing there. It took 4-5 of us to help Vicki while the doctor stitched her hand. I don't want to go into the nitty gritty... but I just want to make a few points. 1. The doctor was amazing. I'm sure it was not the most ideal situations to be put in, but he took the situation in stride and got on his knees in front of Vicki, pulled a light over and went to work. As hard as we all worked to calm Vicki and hold her so he could stitch her hand... I would have been shaking. Well, I was shaking. And sweating. He was so calm. 2. The nursing staff was amazing. They all talked to Vicki and told her what was going to happen, even as she was screaming and thrashing around. They talked her through it. 3. My husband is amazing. He holds Vicki and calms her so well. And she is 5' 1 and 1/2 inches tall and almost 130 pounds now. It's not an easy task. 4. I am thankful for my phone and data plan and You Tube and the 'Barbie Girl' video. We were all singing it, Vicki, Daddy, Mommy, the nurses and the doctors. Come on you know you want to too... 'I'm a Barbie Girl in the Barbie World. Life in plastic, it's fantastic.'  Thankfully Vicki doesn't get all the lyrics. :)  In fact, as an aside... Vicki sings: 'Come on Barbie, let's go potty... oh, oh, oh...' It's cute. 5. Vicki is amazing. That should have been #1. Now, I'm sure no one enjoys getting stitches. This was Vicki's first experience. 4 stitches in her left hand and another less severe cut that required 6 steri-strips to close. She did not enjoy it. I don't know of anyone who does. But once she started processing what was happening and she got the numbing shot... she settled down a little bit. She even wanted to watch the doctor stitch her up.

We learned a lot of things through this ordeal as well.  Vicki is so, so very strong. Both physically and emotionally. I can't say enough about her. It's little things that we had to do... that I didn't have preset on her visual schedule. How can you preset these things. Life happens. Accidents happen. You can't plan for everything although I certainly try. The little things... like unwrapping her bandages for the first time and getting bacitracin on her cut. First time, not so good. Second time, much better. Third time, she just about wanted to do it herself. Vicki liked her hand wrapped, which I am so very thankful for. I could fill up pages and pages of things that have happened in the past that were so very, very hard. Even just leaving a band-aid on her body was immensely difficult. If she would get a mosquito bite, she would pick at it and pick at it. Vicki knows her body, and if there was something- some cut or scratch- that didn't belong, she didn't want it. But this time, I think she took comfort in the bandages. So we made them very pretty and colorful for her. And that third night, she said, 'Boo-boo band-aid' and held her hand out for us. And she didn't get upset when I wrapped her hand in a garbage bag when she would get a bath. I would demonstrate it and hold my arm up in the air. No wet. Keep it dry. Arm up. She was amazing. Oh, and strawberry ice cream has magical powers. :) 

After the 10 days were up, we were sweating again thinking about taking her to get her stitches out. My husband took off work and by some miracle, the same doctor was working. And it was just myself and my husband and the doctor for the most part. Oh, and Barbie Girl. And a promise of strawberry ice cream. Vicki did very well, all things considered. And the poor little girl had to endure the doctor picking her stitch that had laid down in her cut out... :(  So a little more blood and soreness. :(  But nothing that a Charlie Brown band-aid and ice cream couldn't fix. We are still wrapping her hand even though the stitches are out. Until there is nothing there she can pick at, I think it's best. I'm a wee bit nervous that Vicki won't want to not have it bandaged, but I'm sure she'll handle it just fine. There will be a scar. On Vicki's hand. And on mommy's heart... I wish I was quicker or anticipated her move. I wish, I wish... As a parent, I just want to take all of my kids hurt and owies away. I am so very thankful though, that it wasn't worse. When I think about how bad it could have been, I get sick to my stomach.

So as I said before, I was hestitant to write too soon... If you recall, Vicki has had some potty issues at bedtime on and off, for the last few years and especially the last few months. And like I said, it could have ben so much worse. I don't think I slept much while her stitches were in. I watched her monitor at night like a hawk. Even though she was on antibiotics, I couldn't imagine Vicki smearing at night and getting it around her stitches. I don't even want to go there, and am so glad I didn't have to.

So there you have it. My frightening Halloween story. It all ended well. We came home after Vicki got her stitches and finished our jack-o-lanters. Vicki dressed up like Annie for Halloween the next day - red hair and all - and went trick-or-treating. She got lots of treats. And, of course, watched Charlie Brown again.

Just wanted to leave you with a few lines from Annie that I thought were appropriate for this post...

I don't need anything but you!

You've wrapped me around
That cute little finger. (get it... she cut her finger)
You've made life a song .....
You've made me the singer!

And what's the bathtub tune
You always "Bu-Bu-Boo?" (reminds me of her saying boo-boo bandaid)

Bu-Bu-Bu
Anything but you

Yesterday was plain awful (umm, yep..)

You can say that again

Yesterday was plain awful

But that's
Not now

That's then.

xoxo... until next time...

Plus 6.

I've started writing so many times in the last few weeks. And then stopped. Emotionally I've been drained. And writing, which usually helps me, seemed like such a daunting task that would open wounds that were just starting to heal. Well, I'm still not quite ready to write about that stuff (and if you haven't seen my recent facebook posts... just to give you a preview of future blog posts and to not be so cryptic ... my dad died 6 weeks ago and we had to put our doggie to sleep last week. So death and grief has been on my mind a lot).  But I do need to write. So, here goes... And here's my disclaimer... subject matter in this post is of a sexual development nature.. so if you are uncomfortable talking about or reading about stuff, then you should probably skip this post. And, just in case you all have forgotten how I write - I write like I talk, and I write like I think. Which usually means I am fragmented and all over the place. This post is no exception to that. :) Plus I'm a little rusty.

I'm wondering if anyone has guessed already what this particular post is about. Autism. Yes. Vicki. Yes. Development. Yes. Puberty. Yes. And for those of you who know Vicki quite well... you may want to sit down. Yes. Vicki got her period. How's that for being frank? It's not like I should have been blindsided. And if anyone had been reading my posts in April, I think I posted once about taking Vicki to see an endocrinologist to get some questions answered and to talk about precocious puberty. Oh yes, puberty has been on my mind for the last few years. And if I may be honest, I have been scared shit-less about this day. I knew it would come. I wanted to be ready. I tried to be ready. But. I wasn't ready. Is any mom ever ready for her daughter to grow up? I am choking on the words, ' become a woman.'  And, here I go jumping all over the place. Sorry...

You know what makes me mad? Here I am talking about how Vicki getting her period makes me feel. How I am handling it. It's not about me. It's about Vicki. And how Vicki feels. And how Vicki is handling it. Do you remember the first time you got your period? (And... if there are guys reading this... sorry... so for you, do you remember how you felt the first time you had to go to Target to buy sanitary napkins for your girlfriend/wife?)  Were you scared? What did you think? Did you understand what was happening to your body? I know I didn't. I don't remember where I was, or exactly how old I was, or what I was wearing... I do, however, remember asking my mom questions. And I remember her comforting me. And, oh, what tears a little hole in my heart is not knowing how Vicki feels or what Vicki is thinking. I just look at her and look into her eyes and want her to know that I would do anything for her. I want to answer any question that Vicki has. But Vicki can't ask the questions. How do I explain everything that she can't ask in a way that will comfort her and know that everything is okay? And that this kind of bleeding is 'normal'.  Sometimes I just want to scream. Sometimes I just want to cry. Sometimes I do both, and sometimes I do both at the same time. It's not fair! It sucks! (To lighten the mood a bit... I reread this and wondered if I am talking about Vicki or if I am talking about menstruation in general. ha. )

Wow. I really am sucking at this writing thing tonight. Sorry.... So... I got the call yesterday from Vicki's teacher at school. And I was so concerned. And so blindsided. So scared for Vicki. Wanting to go in and sweep her up in my arms, which, technically is very difficult to do now, because she can almost look me eye to eye. She's at least 5'1" and I am 5'3 and 3/4". I need to put 3/4 in. :)  And at the same time I was so very mad at myself. What a failure of a mother I am. I wanted to ask all of the right questions and have everything neatly written out. Stuff done. So Vicki was 'prepared'. So I had questions answered. So I knew exactly what I would need to do for Vicki to help her. I wanted to know what was in store for us. I thought I was doing the right precursors... asked doctors, went to specialists, googled the heck out of autism and puberty for girls. And I came up with not a whole lot. I felt rather silly for asking the questions I asked this past spring when we took Vicki to the doctor. I felt like she thought I was rushing things and asking things that didn't matter now. She said we had at least a year and a half. Well, technically, now, it would be a year. I never did get the results of the testing they did. That's what makes me so mad. I get all gung

So what did happen yesterday? How did Vicki react? What did we do to help her? Well, I did nothing. Her teachers, however, were amazing. They did everything. (PS... I love you!! I can never thank you enough!) And, secretly, well, not so secretly, since I am blogging about this... I am glad it didn't initially happen on my watch. :)  I was on the phone with her teacher shaking and trembling. They took care of everything. All I did was pray. And google. And think. And call doctors, behavior analysts, and my mom. While Vicki was at school, I was at Target. Going up and down the feminine product aisles and brainstorming... Which kind should I get? How should I approach this? What kind of reinforcer should I think of?

To make a long story short, well, not so short... after much deliberating and talking with her teachers and other professionals and gaging Vicki's reactions, this is what we came up with... Vicki does amazingly well with visuals. Do you remember the communion visual story I made up for her first communion? Anyway... we thought visuals were the way to go. So we made special potty books for Vicki. On the front are pink hearts and Vicki's name and the potty symbol. On the inside we have strips of Velcro with a sequence for Vicki to follow. This may sound gross, but to Vicki, she needs to be able to understand clean and dirty. So I took a pad and put red food coloring in it to simulate blood. I took a picture of it. So when she sees that picture.. 'red spot - time to change pad', we've associated that the pad is dirty and gave it a color for Vicki. Then the sequence of taking off the pad, wrapping it, throwing it away, wiping, putting a clean pad on, pulling up pants, washing hands, and getting an amazing reinforcer for doing an amazing job. And there you have it. It's not as cut and dry as that. But that's the basics. This is only day 2, remember. I'm sure there will be lots of trial and error and bumps along the way. But, on day 2, today, I think I am finally forgiving myself for not being 'prepared'. Because, who is ever really, really, prepared. I know a few, but come on... Realistically. And, to make myself feel better... until it actually happened, we didn't know how Vicki would react. 

Here are a few things we are learning. 1. Vicki is amazing. (well, I already knew that, but, oh my goodness... this just reinforces it.) Not only did Vicki start her period yesterday, but she also lost a tooth. And she is taking it all in stride, unlike the mommy who is, I think, still shaking, as she writes this. :)  2. Vicki likes to be clean... So something that I didn't think of is that she would try to wipe and wipe until the toilet paper was clean. Well, that won't happen and we didn't want her to wipe too much and become uncomfortable. So, we limit the wiping. A picture of toilet paper 1x and a picture of a wet wipe 1x. And then the pad. 3. The hardest part for Vicki, it seems, is pulling up her pants when the new pad is on. Maybe she doesn't like the feeling of it... That's where the behavior is coming in. So we talk to her and tell her what is coming up next and go through the pictures and steps with her. And, thank goodness, there was her favorite- baked potato bar at lunch yesterday. Never underestimate a good 'first / then'. And, thank goodness for chocolate. And for the power of waiting a behavior out. 4. Pairing the chocolate with a new princess stamp set is helping lots. She really likes it. And, today, even put her chocolate down to stamp her name. :)  5. Pink stuff is good. Pink girly stuff makes the other girl stuff less scary. I bought the always pads with wings because they had cute little pink wrappers. And I bought those little baggies that come in a container that you hook on your belt when you walk your dog... because they are bigger than what you normally wrap a pad in. They smell good. And, yep, you guessed it. They are pink. And Vicki thinks they are cool. 6. Did I mention that Vicki is amazing? She hasn't cried. She hasn't 'freaked out'. (like mommy). She's just going with the flow. Oh, yuck. No pun intended. :)

I'm sure I will have a lot more to say in the next few days about this. But for now, I am grateful. Grateful for the support. From my husband. From Vicki's teachers. From Vicki's aides. From my mom. From my friends. And from Vicki.

One final thought. Another thing that has been on my mind. Vicki is only 9. I understand that some girls get their periods earlier than others. I developed early. But not that early.  I am still so scared. She's 9. She's almost as tall as me. She's got the body of a woman. But she is my baby. My baby girl. And, yes, she is my baby girl who has autism. And this is my 9 year old baby girl who has autism and now has her period. And that opens a whole new topic for discussion. Another time. I will end tonight with one of Vicki's favorite singers. Britney Spears.

I'm not a girl,
Not yet a woman.
All I need is time,
A moment that is mine,
While I'm in between.

I want so much more time. So many more moments. And I am so, so very blessed to have Vicki.
And I want to say how proud I am of her. She embraces life and everything it throws at her with such grace and beauty and dignity. I am in awe of her. My beautiful 9 year old with autism teaches me more and more everyday. xoxo

Plus 5.

Well, hi!!! :)  It's been a while. Quite a while. I really meant to update at least a few times a month. And I just looked at the date of my last post. Yikes. It seems like that's me as of late. I am either all or nothing. I am all in, or I don't do it at all. Let me give you some examples: well, for starters, blogging. I can't believe I actually did it everyday in April. I was all in. And then, bam. 7 weeks since my last post. Another example: cleaning. It's either obsessively clean and I want the pillows just so and the cute little lines in the carpet so I vacuum everyday (you know, the lines the sweeper makes as you sweep. ) And then I don't want any footprints in it. I'm sure I've told the story before of how the kids and my husband like to get on my last OCD nerve by dancing around and running back and forth over my newly lined, swept carpet. And to make it worse, one pant leg will be pushed up and cuffed and the other will not. So the kids are all lopsided and making lots of carpet footprints. Arrggghhhhh.... Yes, I'm sure I have a problem. :) Well I either have lots of problems, or no problems at all. Oh, wait, I never finished my thought... I was on it's either clean or...... it's not. And I don't vacuum for a week.  I just look at the piles of clothes stacking up in my room and mail and papers stacking up on my desk, and then I can't find something and a pile topples over. So I either walk away or add something else randomly to the pile.   What else am I all or nothing with?  Oh so many things, exercising, dieting, washing socks. :P The list goes on.

I wonder where Vicki gets some of her tendencies from???  Let me tell you something she is either all or nothing with. The whole bedtime thing. (As a side note... I was actually planning on writing an update tonight. Even though I haven't written in a while, I've had a lot on my mind. And I like writing about it. So, again, with the all or nothing mentality... I'll probably write for a few days in a row.) Anyway, I was going to sit down and finish my story about what happened with Vicki's room. And then it's as if Vicki had this sense that she needed to give me something to write about.  I was going to write that things have been going very well at bedtime. I was almost feeling like bedtime was my relaxing time again. My husband and I were starting to whittle our way through DVR'd shows and movies. We're all caught up with True Blood, Glee, Fringe, Bones. And we even watched a few movies. Not all in one night, but over the course of the last 7 weeks. We'd been keeping Vic's monitor on at night to watch her. Maybe all of this summer fun and sun has had her tired. And she recently rediscovered her favorite doggie stuffed animal and she would snuggle with him at night. I was thinking, hmmm... maybe we disrupted whatever routine she had gotten herself into at bedtime by sleeping in the living room for a week while Daddy put her new floor in her bedroom. Maybe that was enough of a time delay, and such a different setting at night that she forgot that she was smearing. Maybe she just really loved her new floor. After we put the new flooring in, I also spray painted her bed frame. It went from a dark wood color to a dusty pink. Very girly. And I put some princess wall stick ups on it. She loved it. And besides looking cute in her room, it now made looking for smelly stuff easier on her bed frame. Who knows why she hadn't smeared since we put her back in her room. I was just thankful that I wasn't going through can after can of resolve carpet cleaner anymore and my laundry detergent use decreased a little bit. And I was getting an hour or two more sleep a night. I get lulled into this false sense of comfort. And tonight both my husband and I were working in the office and hadn't turned the monitor on yet. And Vicki had gone to the bathroom right before bed, so that always makes me feel a bit more secure. But not tonight. My husband just stopped what he was doing and when I asked him what was wrong, he said his nose alarm went off. And, from experience, I've learned not to question his nose alarm. One thing I have to say is that it is definitely much easier to clean up a hardwood floor than it is a carpet. That makes clean up easier, but it doesn't solve the problem. And I still had to strip the bed and do the wash, clean the floor, clean up Vicki, clean under her nails. And use the Lysol. I really, really hope this is not the first night of lots of nights to come again. Back on high alert. And guess what. It's still hard. She was laughing again tonight. The laughter kills me. I usually love Vicki's laugh. But not tonight. Not when it's associated with this. Her laughter, in this specific scenario, makes me so sad. And confused. And angry. And guilty. And a whole lot of other emotions, all crashing down on me like waves in the ocean. Fast and furious. And then it's gone.

Plus 4.

Thought it might be time for an update... it's been a few days... wow. 2 weeks, I guess. Time flies. Funny. I was actually dusting our bedroom the other day (a shocker in itself), and we have this little hourglass decoration. I dusted it and flipped it over to watch the sand twinkle down to the bottom. About halfway through, it stopped. And I haven't touched it since that day. And it's still stuck. Wouldn't it be cool if time stood still for a few minutes? As hard as some days are, I know that in a few years I will long to have these days back. Sigh...

So, wanna get on the roller coaster ride tonight? The last time I wrote I was ready to rip up Vicki's carpet. Well, we finally did. We took our time and tried to find something that would work for her room. And you know what? It's hard to find what I wanted. So we compromised on some things, and ended up with a snap/lock floating floor in a pretty hardwood color. Clean-up might not be a complete cinch, but it has to be better than my resolve carpet cleaning system! I just couldn't find exactly what I wanted: a bright red vinyl floor, one big piece, with no texture, no seams, and super easy to install and don't forget very affordable, oh, and I want it today.... (I was imagining it to look like those booths in a diner in the 50's. That wasn't what I started out wanting, but I saw the underlayment that my husband put down for the new flooring and it was red. And i liked it. But, geeze, they don't sell it.) Just as an aside, snap/lock flooring systems are not as fun or easy as they sound! They should be called "snap, swear, stomp, swear, pop, snap again, and then beat with mallet flooring system." That is a much more appropriate name. :)
 
Anyway... you know when you think things are going to go one way, but then with every little step there is a problem, you know, pretty much anytime you do a home improvement project. (wow... let's count how many times I write 'you know' and 'so' and 'anyway'. It could be the blog drinking game.) With tearing up the carpet in Vic's room, we have pretty much rendered our upstairs useless. So, since it was Memorial Day weekend and we had a long weekend of cleaning and working around the house, we decided that we would go 'camping' in our living room since the upstairs was not in the best of shape. I say, always camp in the living room... 1. you are in air conditioning. 2. there are no mosquitoes 3. there are no rocks or dirt (well... maybe dirt!) and 4. no ticks!!  It's a win, win. :)  Joey pitched his tent and the festivities began Sunday night. And, even though we could probably clean up enough stuff upstairs so at least 1 kid could sleep in their own bed, but, for those of you who have multiple children, you know that 1 kid would NOT be happy. So, it started out with 3 kids in the tent in the living room. 5 minutes after bedtime, Ally was on the big comfy chair, 'they were squishing me!' 10 minutes after that, Vicki was on the couch. (More so because she moves around quite a bit and giggles and talks for a long time, and one thing I never realized, tents are scratchy sounding when you move around.) So, 15 minutes after we went to bed, Joey was in the tent, Ally was on the chair, Vicki was on the couch. And, yep, mommy was on the floor. And now it's Wednesday night. And after a few days of the floor and Motrin, mommy is over this adventure! Kids are still digging it. In fact, I was really surprised at how well Vicki did with the change up in routine. I take her up to her room every night, and show her the progress daddy is making on her new floor. And she has no problem walking back downstairs with me and jumping on the couch. I am actually nervous now to put the kids back into their rooms... I may have some trouble, and not just with Vicki. We'll figure that out when the time comes, hopefully tomorrow!

So. Floor is almost done. Yippi! I am looking forward to sleeping in my own bed again. But honestly, besides the soreness of sleeping on the floor, it has been much easier sleeping next to Vicki and keeping an eye on her than it has been for the last 2 weeks. After the last time I wrote, I had many more resolve cleaning sessions with the carpet and late night showers for Vic. In fact, there was one night that was especially bad... after cleaning in the basement (another pet project of mine of the last few weeks, it seriously looks like we are hoarders down there... oh I have lots to say about the basement, most of which doesn't have to deal with autism, so I guess I shouldn't go there... But I will diverge here for a second and a few thought about the basement and autism. I am certainly not going to blame the disorganization of the basement on autism, although I would like to... but it is very challenging to do things in the basement. When Vic is home and I don't have anybody else with her, it's kind of impossible to even go down into the basement, let alone 'clean it'. I can't be away from Vic that long, not even long enough to throw a load of laundry in, which, I would like to blame my lackluster laundry skills on autism too, if I could :) while I am at it! Anyway (drink if you are playing!) Where was I? Oh, deep thoughts on the basement and autism... I have a lot of boxes in the basement, filled with lots of random stuff. many years of random stuff. And I found a box of some of Vicki's old therapy stuff and things she did in preschool. And it makes me sad. Because so many of the things I saw in that box, Vicki is still struggling with. Years and years of struggling. And there were so many old toys in the basement. Preschool toys that Ally is way past. But I'm not sure if I should get rid of them all yet, because Vicki could still really benefit from them. I will pick back up with this thought another time...I was talking, I think, about an especially hard evening after I had been cleaning the basement...) After cleaning the basement for a few hours, my husband had been watching Vic on the monitor, but in the few minutes that I asked him to come to the basement, yep, she had smeared. After the cleaning routine was done, I took the laundry to the basement and kept working. In that amount of time our dog, Layse, had peed. Cleaned that up. Maybe an hour later, my husband heard someone crying upstairs. Ally. And she was sick again. All over everything. My lpoor ittle girl who was just sick on mother's day, was sick again. Clean. Resolve. Waning. Bath. Snuggle on mommy in chair the rest of the night. That was a hard night.

I will make one final  (long) statement about the nighttime potty issues we have been experiencing nonstop. There are many things we need to do. What we have been doing can not last forever. Changing from carpet to flooring may help ease clean-up, but it doesn't solve the behavior. I don't know what I did wrong. Somehow Vicki was reinforced, and continues to be reinforced, I am convinced, by someway I responded to her during clean-up. So many maybes... Maybe it's all sensory. Maybe she really does have to go. Maybe she just wants that shower. Maybe she just wants a response. An emotional response. Any response. Maybe... maybe... maybe... We need a better communication system for Vicki at night. We need to ramp up reinforcement of using the potty all of the time and at night especially. We are trying using a shower as a positive reinforcer for going to the potty at night, not for after for clean-up. I've thought and thought, and talked and talked (ps... if you are reading this.. thank you for talking and listening and just making me feel better!! xoxo). And have no answers yet. And now I am terrified of putting her back in her room. I take her to the bathroom much more frequently throughout the night now. And really watch her for the first 2 hours of bed. We had been watching the monitor and running in for any little thing we noticed. When it was 'bedtime' for the kids that used to be my ahhhhh... time. My coffee time. My me and my husband time. But now it's stressful. And I'm tired. And school lets out in 2.5 weeks. And then it's every minute of the day. Whine. Whine. Whine. Sorry!!!  I missed writing. Maybe I should call it whiting. Whiny writing. :P  Thanks for listening, again! xoxo
Talking about time... being a mom and a wife, no matter what the day looks like, is how I want to spend my time. Always.

If I could save time in a bottle
The first thing that I'd like to do
Is to save every day 'til eternity passes away
Just to spend them with you

If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then
Again, I would spend them with you

Plus 3.

Two nights. Two posts. And I really wanted to follow up last night's post with a feel good one. Not gonna happen tonight.

My husband and I decided to watch our dvr'd Glee episode to get our minds off of tonight's 'incident'. In hindsight, seeing the episode titled  'funeral'... maybe it shouldn't have been our 'go to' escape tonight. Then again, maybe it was just what I needed. Something to put tonight into perspective. So often being in the moment is so very overwhelming. I often talk about being up, then being down, then laughing, then crying. A lot like what I imagine Vicki's emotions are doing to her.

It's so good to just step back. Take a breathe. Breathe in and out. A few times. Then have a nice cry. And that's what Glee (and my husband) did for me tonight. I had a very nice cry. And, I remember how very thankful I am. For everything that I have and everything I am. I have an amazing husband who has been there for me at every turn. He's my rock. I don't need to say anything. He can read it all in my eyes. I have 3 amazing, beautiful, wonderful, loving children. And their smiles and their laughter and their love make my heart soar and makes me want to just throw my arms out, my head back and spin around and around, in a good way. Not in a dizzy 'I feel sick' way. :)  To be able to tell the people I love how much I love and appreciate them... to hug my loves so tight and be hugged in return... What is that saying?... 'To the world you might be one person, but to one person you just might be the world'. I know I am all over the place right now... Seems to be a reoccurring theme for me lately.

All I know is that the whole reason for me writing tonight in the first place, and all of the feelings I had at that moment in time, have seemingly melted away... And I didn't think that could happen tonight. I was feeling really shitty earlier. Shockingly enough, it had to be about poop again. Right? One minute my husband and I are in Vicki's room talking to her about her day. She told us she had PE, and that she played catch with a yellow ball. She squealed with delight as she told me the movie, Beverly Hills Chihuahua, she watched tonight. She was humming a song. We were telling her how proud we were of her for picking (from her choice board) push-ups, bear crawls and sit-ups for her exercises tonight. She was giggly and dancy. And, oh my goodness, I wish I could capture the look on her face and the song in her eyes when daddy tickles her. That smile just blows me away and makes it hard for me to catch my breath. After she tells me, 'door mommy. goodbye.' I leave and go read a book to Ally before bed. We read The Ugly Ducking tonight. After an extra long drink of water, she's ready to go to sleep. Then I move onto Joey's room. And I decided to hang out with him for a while and talk. So I laid down next to him and we just chatted. We have some of our best conversations right before bedtime. Sometimes we don't even talk. We just look at the stars on his ceiling. I was in his room longer than I though, shh.. don't tell... I think I may have dozed off for a minute or two. I say goodnight to him and head out to the hallway. And then I smell it again. And I can't help it, tears just well up in my eyes. I just wanted to spend a few minutes with Joey, I had planned on checking in on Vicki anyway and take her to the bathroom again. But she beat me to it. And I guess I was groggy from just chillin' in Joey's room, I didn't notice until it was too late, but tonight, Vic took things a little farther than usual. Instead of just having it all over her hands, she must have been craving more sensory... she had 'painted' the bottom of her feet. And I missed it. It's kind of like having muddy footprints all over your (what used to be a cream colored at one time) carpet. They lead from her bed, into the hallway, and into the bathroom. You would think I would have caught that quicker. But it just didn't register until it was too late. Lets just say, I used up all of my Resolve, both the carpet cleaner, and my psychological well being. I really need to buy a new steam cleaner. So after the routine that seems so routine now... and Vicki soaking in the shower, the sheets stripped, carpet cleaner on the footprints, I was scrubbing and crying again. What a baby, right? It's nothing. So many people have so many other things to deal with. But to me, in that moment, it's everything. And it's overwhelming. And I can hear Vicki singing in the shower again and laughing. And laughing. And I'm scrubbing and crying. And I know, or at least I want to believe, that she doesn't know exactly what she's doing, because if I don't believe that, I don't have anything to hang on to...  I know that she really can't help laughing. And she really doesn't understand. But in that moment, I am mad. I am pissed. And I am sad. Incredibly sad. And tired. And mad. But you know what song I started humming at that moment?...

Nothing's gonna change my love for you
You ought to know by know how much I love you
The world may change my whole life through but
Nothing's gonna change my love for you

If the road ahead is not so easy
Our love will lead the way for us
Like a guiding star
I'll be there for you if you should need me

Nothing's gonna change my love for you
You ought to know by know how much I love you
The world may change my whole life through but
Nothing's gonna change my love for you
And my husband comes in and locks eyes with me. And I don't say anything. I don't know if i can get this clean. And then I tell my husband that I want to just rip up the crappy carpet tomorrow. It's so hard to get the smell out, and the stains and I think it would make me feel better to just rip up the carpet. And put down some kind of easier care flooring. Because as much as I want to hope, it's going to happen again. And again. And again. I know we don't have the time, and especially not the money, but sometimes I can be so unreasonable and so unyielding. I just want to rip out this carpeting tomorrow. Now. Like by doing that, I don't know, somehow it will make me feel better. Because yet again, it's all about me.

But like I said, here I am now. And tonight's footprints and emotions are already fading.
And I am looking forward to what tomorrow will bring. Maybe a new flooring? Probably not so quick, but we can hope, right? Tomorrow is kindergarten volunteer day  and Vicki's horseback riding day. It's going to be a good day.

"I don't understand why in times when I needed you most,
you should leave me."
The Lord replied, "My precious, precious child,
I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints,
it was then that I carried you."

Plus 2.

Sometimes I wonder about me. Gosh, 'mood swings' doesn't seem to be a strong enough descriptor. PMS. Nope. More like AMS. (Lets call it Autism Mom Syndrome).  I've talked before about how so much of what I feel and what I am in any given day is in direct relation to how Vicki is doing at any given time. Vicki's up. I'm up. Vicki's good. I'm good. Vicki's down. I'm down. Vicki's bad. I'm bad. Of course, call it even just EMS (Every Mom Syndrome). I'm guessing most moms feed off of their kids' moods. Things can be just chugging along, and maybe even one day, you pat yourself on the back. And you think to yourself, hey, maybe I can do this mom thing. Kids seem happy. They're clean. They're fed. They're learning. They're sweet. They got to -whatever- activity on time. Not bad mom, not bad. Then, bam. Maybe it's just one thing. Maybe it's just a bunch of little things. And then you start to unravel. And you know when you pull that one piece of yarn, it just keeps unraveling and unraveling and unraveling. And then before you know it, there's just a pile of kinked up yarn laying beside your feet, where just a few minutes ago it was the start of a pretty blanket. That's pretty much everyday for me. And gosh, I hope I'm not the only one who feels like that. And then again, I hope I am.

I know I left off with Vicki's First Holy Communion day. A good day.  And in between there. Let's see. Good/bad, bad, good, bad, good, bad, fair, fair, good/bad. But you know what, even the 'bad' days, once I sit down and think about it, and put the day into perspective, It's never really bad. There's always good. There's always positive. There's always something to take away and learn from. I just wish I didn't always feel like I am teetering on the edge of a cliff. It's funny. I'm tired tonight, like usual. And my mind just kind of wanders at midnight, like usual. I wrote the word teeter, and then i think of a teeter totter. And then my mind wanders to the last time the girls were on a teeter totter. And how it's hard for Vicki. And, of course, the weight different between Vicki and Ally... well, Ally will always end up the one in the air. And Vicki can't seem to push off from the ground by herself. Not sure if it's just that she doesn't have the quad strength in that range of motion, or if she can't motor plan and put it all together. Or a combination. Or, heck, just liking the fact that she is in control of Ally at that moment in time. I know, that was random. Where was I? Actually I'm not even sure.

From my Ally being sick on Mother's Day and the day after (insert more laundry and lack of sleep here...) To Vicki's birthday on Thursday (I always feel so bad, Vicki never really tells us what she wants for her birthday... so I usually guess, and when she opened her presents and saw a Princess and the Frog barbie and a Tangled barbie doll- bad mommy moment, i forget their names-- she seemed sooo excited. And that makes me so happy. I love when she knows exactly what's going on... and she totally knew it was her birthday. And if she feels like we are waiting too long before we start singing the happy birthday song, she'll start it herself... :)  Oh, and p.s... after only 5 days of 'how old are you? 'nine years old'. She got it today all by herself!!). To Joey's birthday on Friday, Friday the 13th. To his sleepover. To a house full of people over the weekend again. To a DARE graduation for Joey today (super proud mommy moment). It's been a wild ride. It always is. I always wonder, will there be a day to just .... insert nothing here. Of course, what would I do with a day like that? Boooring. :) 

Oh, I forgot. Lets also insert a Wednesday that did not include horseback riding (let's just say that of course, any child is going to be disappointed when their favorite activity for the week is cancelled because the instructor is out of the country... but for Vicki, it was all day. And it just broke my heart. And then I think she's going to react a certain way after having a bad day all day, and then she'll go and surprise me and pull out of it with flying colors...go Vicki!) and a Friday the 13th that included a bloody, fat lip (this time, Vicki zero, trampoline, one. Vic will get it next time...) That oughta do it. Oh wait, let's insert the reason for me staying up tonight and feeling the need to write. I was feeling a little under the weather tonight. And decided to lay down. And it was only 8:45. I know better than that. An hour and a half later I wake up to, yep, that smell again. Sigh... Nothing stops for a mommy, right? I kind of had to hold my nose tonight. And then, I think I got a sickening sweet smell of Lysol up the wrong nostril. And it just kind of lingered. Yuck. And then I just can't get to sleep again right after that, hence, my computer writing time while I do laundry. And geeze, I feel so whiny tonight. I don't mean to be. Well, maybe I do. Maybe I should try a different type of wine. And some cheese. And some of those yummy wine crackers. Seriously, am I thinking about whine/wine and cheese as I am talking about poop? Yep. So... anyway... I feel frustrated. You know, you try to 'clean' (and I use the term 'clean' very loosely. smile.) and then, people have the audacity to get things dirty again. It's the same old, same old. Right? Don't you just wish you could press the 'pause' button every once in a while? I'd like to press pause so I can run around and 'catch up' with everything, without everything getting in the way.. You know, like more laundry, more messes, more practices, more homework, more dinners. more dishes... So, I had spend the greater amount of 2 days trying to 'clean' upstairs. And I got to the point where I thought, 'not great' but 'not too bad'. Smells pretty good. Looks pretty good. Take a mental picture and then let the wild ones loose again. And this time I only broke 1 sweeper. (If you are keeping score, that's one steam cleaner and one sweeper now broke. And, of course, we never did buy a new steam cleaner yet... I guess it's time.) So, when I opened Vicki's door tonight to assess the damage, I just had to have a little pity party for myself. Well, with the amount of parties we've had in the last 2 weeks, don't I deserve one too? :)  And, now, this is going to seem absurd, (but if you don't find the humor in life's little instances, how do you keep your head up?), so my husband and I get a flashlight and check out all the little crevices in Vicki's room to make sure we got it all... And I am a poop sleuth. But my husband is an even better poop detective. Some under the metal railing at the bottom of Vicki's bed. There. Victorious. I guess.

Sorry about tonight. I guess I should have just titled today's post 'mommy rant'. I'm sure lots of you are reading and nodding and saying, been there, done that. Yep. Just a week in the life, right? There are so many more great moments. And so many more sad moments. And so many more exhausted nights. And so many more tears. And so many more smiles and giggles.

And tonight, as I was struggling in Vicki's bedroom, I could hear her singing to herself in the shower...

Have you ever thrown a fist full of glitter in the air?
Have you ever looked fear in the face
And said I just don't care?

It's only half past the point of no return
The tip of the iceberg, the sun before the burn
The thunder before lightning, the breath before the phrase
Have you ever felt this way?
........

It's only half past the point of oblivion
The hourglass on the table, the walk before the run
The breath before the kiss and the fear before the flames
Have you ever felt this way?

La, la, la, la, la, la, la, la
You know Vicki, maybe tomorrow we'll get some glitter and throw it in the air. Just because. :) xoxo

Plus 1.

So, I think I've missed this. :) A lot.  It's been quite a week. I won't bore you with the details. Who am I kidding... that's why I'm writing again... Details.

First up.... since today was Mother's Day... To all of you wonderful, beautiful mothers out there who kiss those boo boos, get rid of those monsters, and give your children wings to fly... You are appreciated today and every day! I was very blessed today to be able to spend the morning with my mommy who was visiting us this weekend. There is nothing in this world like a mother's hug. I hope my children can feel my love wrap around them as I can feel my mom's love wrap around me.  I love you mommy! I woke up this morning, not to breakfast in bed, but to my little Ally throwing up in the bathroom at 5 am. And you know what... there is no place in the world I would rather have been... (*well, of course, I wish she wasn't sick though) Holding back her hair, stroking her cheek, giving her a sponge bath. This is a Mother's Day everyday, and this is why I am. (I was hopeful that Ally was starting to feel better, she was jumping all around this afternoon...)  But, kind of ironic, just as I was typing this last sentence, I hear her crying upstairs. She was sick again, and in Ally fashion, sad that her bed was messed up. :(  She's all fresh and clean and snuggled up in my arms an hour later, she just fell asleep in the chair in the living room again. I think it might be a long night. :( 

And the reason I am writing tonight... I feel like I've shared so much of our lives with you, I wanted you all to know about and celebrate with us Vicki's First Holy Communion which she made yesterday... I know whatever words I write, will never be enough to describe what I felt. When I left off with my blog before, we were practicing, going through the steps, and trying to acclimate her to the texture of the host. (We were able to obtain unblessed hosts to practice with her at home.) Some days went ok, some days it sucked. Everyday I felt stressed. Some days when we were practicing, she would clamp her hand over her mouth and push me away and try to kick me. Other days she would ask for 'host' when she saw it on her schedule. She had taken the host on her tongue once for me during practice and once for the director of religious education. She had promptly gagged after each of those times. Some days she would try to spit. Some days she would put a small piece in her mouth and take off tiny bites. Some days she would say, 'mommy host.'

One thing I was sure of was that she knew it was special. And she had as much knowledge of transubstantiation as I could teach her. On her laminated sheet she would see the pictures and state independently: 'host plus home equals bread.' 'host plus church equals Body of Christ.' And the social story I made for her went like this, ' sitting (in pew), walking, priest (says Body of Christ), Vicki's picture (says Amen), a tongue sticking out, a picture of Jesus with a velcro host stuck to his hands, (Vicki loved to take the host off and feed it to the tongue and make chewing noises), then a picture of chewing, the sign of the cross, walking, sitting, chocolate rocks, and froggie lollipop.' And she really seemed to have it down.

Everyone was so nice as we were preparing with her. Calling us. Meeting with us. Encouraging us. Some days I felt guilty for wanting her to receive First Holy Communion this year. Maybe she wasn't ready. Maybe she would never be ready. Maybe I was doing this for me. But you know what, I never give Vicki enough credit. She is amazing, and has proven that time after time. And this time was no different.

Vicki knew when she woke up that it was a special day. And, although, i had thought about doing some dry runs with her outfit, I decided against it. I thought, just do it. Just throw it all out there.. And put the ball in Vicki's court. She hit a home run. :)  No problem getting dressed. And let me tell you, she never, never, wears this stuff... Tights, with bumpy little white dot patterns on them. A 'hold it all in' slip/bra set. Little lace biker type shorts under her dress. A dress. A sweater. A veil. A purse. Make-up. The whole shebang. And she was amazing. And I cried. (Kind of a reoccurring theme for me that day...) She was excited. And I was sharing it with her. We were being girls getting ready together. I have to say, putting the whole veil thing on her, and I'm pretty sure I'm not the only mom who flashes forward 15 years or so, it was so emotional for me. Not knowing if being a bride is in Vicki's future, made this moment even more bittersweet for me.

Watching her and her Daddy walking hand in hand to the church. Watching Daddy adjust her veil. Yep. I cried through it all. She was almost skipping into the room where all of the children were waiting. She seemed genuinely interested in looking around at the other little girls'  and their pretty dresses and veils. She was spinning in her dress, arms out, face to the sky. I'm not talking 'autism' spinning. I'm talking beautiful, unabashed happiness and joy spinning. She waited outside the church in line with all of the children. She walked down the aisle holding her daddy's hand (with mommy following behind toting the bright yellow social story and purse full of reinforcers for her, and yes, mommy was tearing up, a lot.) The lump in my throat just wouldn't go away. Nerves. Yes.  So thankful for this day. We sat in the last reserved pew with Vicki. The alter boys and priest walked in. And I cried. The music. Holding onto my husband's hand. Feeling the love and support of all of our family that came in from out of town, Vicki's teacher and speech therapist sitting 2 rows behind us, Vicki's aides, past, present, and future. My mom and dad. Joey and Ally supporting their sister. It all just hit me with a ton of bricks. And, guess what? I cried. (I'm going to go with 'i kept tearing up because of all of the incense and the lack of sleep.'). Sure. That was it. 

The wife of the director of religious education sat next to me. She hugged me. She talked to me. She kept asking if Vicki was ok. And, well, yes, She was! I looked at the other little girls in front of Vicki. Fidigeting and adjusting their veils. Vicki didn't touch her veil. When the bells rang, I didn't notice Vicki holding her ears. When the incense was intense, and tons of little girls were coughing, Vicki didn't. She prayed the Our Father with our little book that we review every week. She shook the little girls hands during the sign of peace. She held her rosary. She flipped through her 'lift the flap' bible book. She laughed one time and I got nervous. I thought the sillies were taking hold. But it passed.

In all honesty, mass was about 15 to 20 minutes too long for Vicki. It was when the kneeling started. I thought we were going to lose her. And I kept thinking, no, no, no. Just hang on. You can do it... I could see her starting to get upset. My husband was amazing. Vicki was amazing. She held on. We stood up and got in line to receive communion. My heart was beating so loud. I thought everyone could hear it. I whispered in Vicki's ear her social story. The priest saw us and nodded. The alter boy was ready with the catchy thing. And we were right ther when Vicki said 'Amen' and stuck her tongue out. That moment. I can't explain it. The feeling I had. So fufilled. So thankful. So close to God. So close to Vicki. So close to my husband.

Now, after she closed her mouth around the host and my husband ushered her off to the side, yes, she gagged. And I was praying. Hard. She worked through it. It was touch and go for a few minutes, but she walked back to the pew. And, oh yes, I slipped her some chocolate rocks. And, oh yes, I thanked God. And Vicki was ready for her froggie lollipop. And she kept asking for it. That last five minutes before we gave her the lollipop outside of church seemed like an hour. We processed out of church with the children. And bam, the beautiful, perfect sunny day. You betcha Vicki - you can have your lollipop now!!

We met up with the priest at the reception and he hugged us all tight. His smile was genuine. His hug was love. Vicki was radient. Vicki was giddy. And man, there were a lot of people packed into that room, and it was loud and it was hot. And Vicki had a bite of cake and we went home to celebrate her day with her. This is the day that the Lord has made, let us be glad and rejoice. Rejoice we did. Eat, we did. Relax, we did. Cry. I had that one covered. I love you Vicki. And I am so very proud of you. To everyone who was a part of this day, those who were there in the flesh and in the spirit, and those who are reading this now.. thank you. Thank you. Thank you. xoxo

I'll leave you tonight with part of the song that sent me over the edge at mass...

Here I am Lord
Is it I Lord?
I have heard you calling in the night
I will go Lord
If you lead me
I will hold your people in my heart.

Day 30.

So, it's kind of fitting that I end this 30 day blog with a trip to Busch Gardens. A day filled with roller coasters. Literal ones (Vicki's favorite is the Alpengeist - as soon as we walked into the park she said 'rollercoaster. yes. blue and white.' I love it! This was the first time she told us the coaster she wanted to ride by describing it to us!) and figurative ones (a day full of ups and downs).

Let me tell you a few cool things that happened today first. {I'll  preface this with the statement that Vicki has always had trouble with things leaving her body that belonged there--- that's an odd way to phrase it, but maybe because i am tired, I can't figure out what else to say. Anyway, as examples... she had trouble when her baby teeth fell out, she kept wanting to put them back in, which i think i described before.  I don't know if I mentioned this or not, but trimming her nails used to be a very difficult process as well. Vicki has always had trouble when she would get a scratch or a cut. Because that blemish didn't belong on her skin, she would have a terrible time until it healed. I remember one summer when her mosquito bites were so bad, she kept picking at them and picking at them, they lasted forever... Anyway, another thing that's been a sticking point with Vicki, and the point of my little deviation... When I comb Vicki's hair after her shower, you know how some pieces of hair get stuck in the comb? Everybody's hair falls out. But with Vicki, when she sees pieces of her hair in the sink, or in the comb, she gets upset. She will try and take that hair and put it back on her head. When I first saw it, it kind of made me chuckle, but then it just made me sad.} This morning after I combed Vicki's hair out after her shower, guess what she did with the hair that was in the comb after I was done? She threw it in the garbage! Herself! Again, seems kind of odd that I would get excited about this, but it's little moments. :)

Another thing that happened today. We were just hanging out in the car waiting for Daddy to check out of our room and Vicki started drawing her princesses in a little spiral notebook. There was a pack of markers in a case that she asked for. And Ally got really excited, the little mommy, as I call her, saw a need for her assistance. :P  I know I've touched on this before, but Ally and Vicki don't have your 'typical' (whatever that means) sisterly relationship. Ally's role, even though she is 3 years younger than Vicki, is not of the 'little sister'. And Vicki's role, isn't always the 'big sister'. And they don't usually play together, per say. A lot of Vicki's interaction with Ally is either yelling her name (she kind of stims on Alllllleeee....), over-hugging her, or pushing her. So, when there is an opportunity for the girls to do something together, and when Vicki is receptive to this, Ally jumps at the chance. Ally said she would hand Vicki the markers that she asked for. (And in the process, organize the colors of the markers, 50 of them, in the little carrying case. Gotta love her OCD...) This was a great spontaneous opportunity that presented itself and lasted for well over a half an hour. And Ally, without, or maybe with, realizing it, helps Vicki to verbalize what she wants. 'Do you want the dark green or the light green?' 'Dark' 'Good job Vicki. Here's the dark green. I like how you are coloring her dress...'  ABA as performed by a 6 year old. :)  Anyway, after Vicki asked Ally for marker colors for a while, Vicki started asking Ally to draw things for her. First she asked Ally to draw a pineapple by the princess. Apparently the princess was hungry. :)  And then a pear. Finally Vicki asked Ally to draw a princess. It was so cute. Vicki would tell her what body part to put on the princess and what color she wanted it. 'Draw face. Draw eyes, green. Draw mouf. Draw nose. Draw eyebrows (love that one!). Draw eyelashes (Ally's prompt.) Draw hair, brown. Draw dress, purple. And Ally added a crown to the princess. ('Vicki this is a crown. Say crown.' 'Crown'. 'Good job Vicki. It is a crown.' And Ally wanted to write the princess' name on the page. She asked Vicki if the princess was princess Vicki? 'No.' What do you want me to write Vicki? 'Mommy princess.'  (Insert teary eyed mommy in the front seat. Best moment of the day for me!!!)

And this morning, I had forgotten to make up Vicki's schedule before she got up. So Vicki gets up and asks for her schedule. She had heard us talking about Busch Gardens, so she knew we were going. She was very antsy for me to put the schedule together. As soon as I got the roller coaster picture out, she started squealing and jumping up and down. :) I could tell it was going to be a good day. Watching Vicki skip through Busch Gardens holding Daddy's hand is the best! And she loves the music. She skips, marches, and twirls to the beat. Daddy is so good at the park... he is a coaster riding machine. Me, I like to carry the backpack, take pictures, and keep everyone hydrated. :)  Joey and Ally (an aside, she was so psyched today... she moved up to the blue band and that means she can ride the lockness monster!!)  have never experienced an amusement park like most children, having to wait in long lines. Vicki has the disability access pass, where you take a piece of paper to a ride and they put a time on it and then you come back and ride that ride at your scheduled time. We try not to take advantage of it too much, but it definitely comes in handy... it was super busy there today and there is no way Vicki could have waited in some of the hour long lines to ride a coaster. But sometimes, it's even harder, because you have to keep zigzagging through the park, back and forth to catch the ride times... and sometimes Vicki doesn't understand that when she gets up to the ride gate, she's there for a time and not the ride itself, so we walk away without having ridden it yet... That can be hard. Anyway, I was thinking to myself how lucky Joey was to always be able to ride with Vicki's access pass (it's good for 4 people in your party... ). But then I think, wow, am i saying that it's lucky that his sister has autism? And his life is easier because of it? No, not at all. But, it can be nice for a little perk once in a while... We ran into a few little hiccups today. Doesn't everyone at a park? One thing that surprised my husband and I, is that on the giant swing ride, Joey started running out the exit when it was over and wasn't thinking of helping his little sister out. But then he stopped, turned around, and ran to Vicki's seat and let her out. And then walked away. That's so not usual for him. He 'knows better than that'. To get Vicki out of a ride without me or my husband there to hold her hand. And Vic is pretty strong, she wrangles out of his grasp fairly easily. Anyway, my husband and I both reacted at the same time, and he caught Vicki first as she was running out the exit. Joey realized what he did, and starting chewing on his lip, and then went to help Ally out of her seat. Sometimes, in excitement, you just forget. He wanted to be helpful and just forgot. But with Vicki, you can't forget. And we felt bad for sternly having to remind him of that.

And then our bigger hiccup of the evening... I don't even know what happened. So many things have crossed my mind as to why... It was getting late, getting dark, and Vicki knew that our time was winding down. She pointed to the teacups and Daddy took the kids on it. I was watching Vic, and she had her mouth open and she was staring at the ceiling during the ride off and on. But sometimes she does this. Anyway... she seemed a bit off to me. A few minutes later, she seemed to get confused and upset. We were thinking it was because she didn't want to leave yet... She kept asking for more rides. So they went on the elephant ride and then she pointed at the tea cups and said 'this one' and asked again to ride it. As they were standing in line, they turned around and came back out. Vicki had had a pee accident and I needed to change her. She doesn't have many accidents like that. And she had just gone about an hour before or so... I was surprised, but then again, it was a park and she could have just forgotten. But then my mommy paranoia kicks in. I wonder if she had a mini seizure? If what I saw on the ride before... I wonder if the spinning and the lights triggered something? And she just lost control? And then she was crying, which sometimes happens afterwards, but she was also being pulled away from the ride without riding it again because she needed changed. Who knows... But for a while after that, she was odd. She seemed indecisive. She didn't know what she wanted. And I think she was frustrated that she didnt' know what she wanted and couldn't tell us. She asked for the tea cups again, so they went on. And she cried the whole time. And then she asked for another coaster, and was still crying. And then she sat down on a bench and said, 'Busch Gardens. yes. No home. No home.'
:(  And she wouldn't move. And I started thinking, oh my goodness, what if she won't walk out of the park? We are in the middle of the park and it's quite a ways to the car. Quite a ways, even for my husband to get her there. She finally did get moving again. But she was still visibly upset. And she kept saying 'no home. no home'. Even after we got out of the park (phew!!!!!) she said, 'hotel. yes. no home.' I know she didn't want our spring break vacation to end. It makes me happy that she loves what we do, but sad, too. And then, to make matters worse, we did have to go back to the hotel, because they watched our newly acquired family members (BLT) aka... Bob, Larry, and Tim for us. I think. Or is it Bill? Bad mommy for not knowing or remembering! So anyway, we stopped at the hotel, but told her 'no hotel. home' That had to be confusing. I started getting nervous too, because I had the cord in my hand to plug a movie in for the ride home and she swatted it from me. I thought we'd have a deja vu from last trip, where i had to sit in the back with her... But she finally calmed down. And well over halfway home, she finally started asking for 'home. yes.' She was tired. Finally. And after putting the kids to bed, wayyy toooo late when we got home, Vicki decided to welcome me back to reality with a quick smear in her bedroom. :(  Thank goodness it was just a little.

Well, that does it for me. 30 days. 30 days with our autism. 30 days with our Vicki. 30 days with our family. I hope that you have enjoyed reading my blog. I hope that it helped answer some questions. I hope that it gave you a little glimpse into our lives. I hope it gave you an idea of how autism affects not only the child, but the whole family. I hope it makes you think. I hope I helped educate just a little. I am no expert on autism. I am an expert, however,  on my Vicki. And on my Joey. And on my Ally. And on my husband. And on our family. Not sure if I am an expert on myself yet. I'm working on that.

I also just wanted to say that I've enjoyed writing this blog more than I ever thought I would. It's also been more exhausting than I ever thought it would be. And I will miss it more than I ever thought I would. I have enjoyed getting to know you. All of you. Your comments and your personal messages have been life changing for me. I know I haven't answered each one of you personally yet, but just know, I have read every word, and every word has touched me. More than you know. I cherish you. My family. My friends. Those that I have never even met or spoke to. And each one you are just as inspiring. Everyone has a story. I've tried to share mine a little bit. But this month has taught me so much.  Everyone is unique. Everyone is different. And everyone has struggles. It's how we handle what we have been given that makes us stronger. And I am stronger because of autism. And I am stronger because of the love of my family. And I am stronger because of you. Thank you. xoxo

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.