Day 12. Year 3.

One career path that I don't think I'd be successful in... being a juggler in the circus. Why? you may ask. Because I really suck at juggling. That's why. I suck at juggling both figuratively and literally. There are just too many things to think about at one time when you are juggling. Timing. Hand/Eye Coordination. Rhythm. It all has to fit together perfectly. It takes a lot of practice. It takes a lot of determination. It takes a lot of failure. It take s a lot of grit.  It takes a lot of perseverance (there's Vicki's word again!) Most days I don't think I have what it takes.

What made me talk about the circus? And why do I now have this strong desire to go to the circus? It could be because the girls had some cotton candy at Chuck E Cheese tonight after Ally's birthday party. (Which, by the way, I am paying for dearly now... girls. sugar. sleepover. Silly me.)

Besides wanting to go the circus, why else am I talking about juggling? So often, as a parent, I feel like I don't juggle my time very well. I find myself questioning... did I spend enough time with this kid today? Did that kid get enough attention from me? Did I listen? Did I make the right choice? Did I handle that situation the right way? I wish I were good at this parent juggling gig. But I feel like I drop the ball way too much.

I'm so tired right now I don't even remember why I starting talking about this. Oh yeah. Ally's birthday party today. I feel like I was trying hard to juggle that today. I didn't have an aide for Vicki during part of her party. And today, unfortunately, was not one of Vicki's better days. Nothing crazy bad, just not good. And it was hard for me to juggle today. And sometimes I don't even know how to start. Which ball do I throw in the air first?

With autism, I find juggling life a bit more challenging. I know I talked yesterday a bit about Joey and Ally. About them having time to get out of the house and just be a kid. I struggled today during Ally's party... trying to find a way for Ally to just be a kid and enjoy her own birthday party and how to not isolate Vicki, how to have her engaged and happy during the party. So what do I do? Let me give you an example... Ally wanted to set out some snacks for her friends to enjoy... she was very excited to set out  some goldfish, some pink m and m's, purple m and m's, donut holes, and a fruit tray with green and purple grapes, strawberries and cantaloupe.  Ally set a beautiful place setting for each of her friends and had little name cards for each of them, Vicki included. :) 

Ally loves to organize. As do I. And I'm pretty sure both of us have some strong OCD tendencies. Anyway... Ally was getting the table ready and Vicki came over and sat down. And even though I had set Vicki's timer for the 'special activity', she was just too caught up in the festive atmosphere. Along with the food, we had some of those little umbrellas on a toothpick that you put in girly drinks... Ally and I had opened a few so the girls could put them by their tea cups. Well, Vicki saw them and I was pretty impressed. She knew exactly what they could be used for. And I hadn't thought of it yet. Vicki proceeded to take the umbrellas and poke them into pieces of fruit and into the donut holes. And they looked super cute. Vicki did a great job. But then Vicki wanted to take not one, but 3 different plates... one for goldfish, one for fruit, and one for donut holes. And she was asking Ally so nicely for the food at first, then started grabbing all the pieces with umbrellas in them... I think she had about 9 umbrellas when we were done.

So, here I am... trying to juggle Vicki being a part of the party and Ally getting her party. In this instance, both girls wanted something completely different, yet in my mind completely reasonable. Ally wanted things to be just right for her guests to arrive. And Vicki was really excited to party.

I'm pretty sure whatever I did today made each of the girls mad. But maybe that's the point.. finding out how to walk that line between happy and sad, elated and pissed off, enjoyment and boredom. Eh. Not sure I can walk the line or juggle. But I sure as heck am trying. Maybe my life is that 3 ring circus after all. ;) 

You've got a way to keep me on your side
You give me cause for love that I can't hide
For you I know I'd even try to turn the tide
Because you're mine, I walk the line.

Day 11. Year 3.

I had planned on writing a post tonight that was a little thought provoking for me... but, I chickened out when I sat down at the computer just now. I have a little bit too much on my mind tonight. And, thankfully, a lot of what's on my mind does not have to deal with autism. Tonight anyway...

I am scurrying around trying to finish up 99 different things. For some reason I wrote 99 because that sounds so much better than 100. But now I am singing 99 bottles of beer on the wall, 99 bottles of beer. And that makes me thirsty. Not for beer; I am not a beer drinker. But for, what else, coffee. Be right back. ;)  Much better. There is nothing better than a hot cup of coffee at midnight with that flavored Italian sweet cream coffee mate.

Stupid to-do-lists. Tax preparation. Blech. You would think some year that it wouldn't surprise me when tax day rolls around. You would think I would try to prepare a bit more ahead of time. Especially since this weekend is going to be crazy busy. But, nope. I like procrastination. I like doing things under pressure. Speaking of that... I tend not to sleep much during the month of April. It's amazing to me how writing a blog for a month can really cut into my productivity. Or more precisely, my productive sleep time. Remember the other day when I was talking about getting Vicki ready in the mornings? How I said that I wake her up at 7:30? Well, I looked at my clock yesterday and it said 7:42. It's amazing to me how quickly I started thinking about worst case scenarios... I ran downstairs and did Vicki's schedule for the day and quickly went in to get her. But usually, when I am short on time, Vicki seems to sense that... I guess it's pretty hard not to sense me all frazzled. :) So, I had to make a legitimate effort NOT to seem rushed, so that in the end we could rush, if that makes sense. Even though I am silently counting the ticks on the clock, I lay down next to her as usual and slowly start talking about her upcoming day. Thankfully, Vicki was agreeable that morning and off we went. In the end, all 3 kids got to school on time, were showered, fed, medicated (wait... that sounds odd) lunches packed (except Vicki, who buys her lunch everyday. She loves making the choices in the lunch line!) and homework in their backpacks. AND, I got the girls to school 5 minutes earlier than usual. Pause for loud clapping and whistling. Woo hoo! Go Mommy. go mommy. go! Maybe I'll have Joey look for a ring tone like that for me. :) Just to feel good. Anyway... that morning solidified the notion that I work much better under pressure. :) 

What else am I scurrying around tonight trying to do? Well, the kids don't have school tomorrow and Ally is having her birthday party tomorrow. Her birthday is not until Sunday, but she wants to have a few friends over for her very first birthday sleepover at her house. :)  So, I will have 3 girls in addition to my 3 kiddos for the afternoon. Then we are all headed to Chuck E Cheese. Yes, that's me squealing with delight over that one. I love Chuck E Cheese. (Umm... that was sarcasm. ) Chuck E Cheese. Where a kid can be.... super crazy over tokens and tickets that really don't buy you anything besides a tootsie roll and a plastic slinky. But, man, that's the best tootsie roll and plastic slinky my kids have ever seen. :)  Can't I just buy them some tickets ? Or better yet, just buy them something at Five Below? Sigh. I'm complaining about it, but I am really excited for Ally. She is over the moon excited and will probably get me out of bed at 5 just to decorate for her party. :) 

I haven't really talked a lot this year yet about Joey and Ally and autism. But, as I've said before, their home life is so very different from other kids their age. They don't have a lot of friends come over and play at our house. Sometimes it's just too hard. Plus I love it when they get out of our house and go somewhere else to play and relax and just be a kid. And just leave autism behind for a few hours.
So much of Joey and Ally's life is dictated by what we can and can't do because of autism. They are used to how we always lock our doors and keep our windows shut and locked. They are used to me saying, 'what's Vicki doing?' when I walk out of the living room and do something in the kitchen for a few minutes. They are used to Vicki not sharing the couch with them. They are used to Vicki yelling. There are millions of little things they are used to that they don't even blink an eye at. And although they never say it, I wonder what they think when they do have a friend over? Are they worried about how Vicki will act in front of them? Are they worried their friend will make fun of Vicki? (None ever have... everyone that has been in our house has gone out of their way to say hi to Vicki and talk to her. Not at her. And I think that's amazing.) Are they worried that their friend won't want to come back?

Gosh, yet again, I forget my point. Oh well.

I need to run... because I just realized that number 3 on my to-do list is bake Ally's birthday cake tonight. She wants a butterfly cake. Fun. No really, I love planning parties and decorating cakes. It's a great diversion. And we all need reasons to celebrate. Tonight as Vicki and I were talking about her schedule for tomorrow... I started out by saying there was no school tomorrow. Vicki doesn't like it when there are random no school days. It doesn't make sense to her. Plus she loves Fridays at school because that's library day. New cookbook day. Vicki tends to argue with me... I say no school. She says school. I say no school. She says school. It's fun. But tomorrow right after I said no school I told her we were having Ally's birthday party. And she gave out a super excited Vicki squeal. We all need something to look forward to and celebrate. And that's her sister's birthday party tomorrow. (If you could just say a little prayer that she's still happy about it tomorrow morning and that all goes well... I would appreciate it.  Planning and executing a child's birthday party in general, is no small task. Add to that autism, and well... it can be very frightening. Let's hope Chuck E Cheese and a butterfly cake make the day. Fingers crossed.

BTW... I said I was going to start making more Vicki-Did-It lists... here's a few check marks for you:
Even thought we haven't gotten Vicki to go into school without her purple sweatshirt jacket yet, she didn't wear her coat outside for recess the other day, and she left her jacket at home when she went for a walk. Yay Vicki!

And how about this one for on Vicki's-Did-It list... She got nominated to be one of the "words of the month" students... they get their picture up on the front hall wall at school and a quote under their picture as to why they were chosen. Vicki's word was perseverance. "No matter what difficulties she faces every day, she perseveres." Well done Vicki. Well done. I couldn't agree more.

Now it's time to  persevere through our day off tomorrow and enjoy the party. xoxo
(PS.. sorry this was such a lame post!)

Day 10. Year 3.

I read an article today that featured Temple Grandin. (For those of you who don't know who she is, this is on her website www.templegrandin.com: Temple Grandin, Ph.D., is now the most accomplished and well-known adult with autism in the world. Dr. Grandin presently works as a Professor of Animal Science at Colorado State University. She also speaks around the world on both autism and cattle handling.)
A few years ago I went to a conference where she was the key note speaker. I met her afterward and, even though I felt silly at the time for doing it, I asked her to sign her book for me, Thinking in Pictures. So she did. And she signed it, 'To Vicki...' :) 

When I was reading this article, a few of her quotes struck a cord with me.

"I don’t like it when nine-year-olds walk up to me and they want to tell me about their autism. I want to hear about their science project or their history project or the art they’ve done. Things that they’ve done that they can turn into a career.”

“I would rather see a kid get fixated on something they can turn into a career rather than getting fixated on his autism,” she said.

Read more: http://www.autismsupportnetwork.com/news/children-autism-must-learn-work-3578933#ixzz2Q7ZD6MZk

It's odd to me how sad I got when I read that. I don't want to go too deep into this tonight, because frankly, I am exhausted. And I am not sure I want to tap into that section of my emotional lability right now. I know autism is a 'spectrum' disorder and the big quote out there that everybody hangs their hat on is, 'If you've met one child with autism, well, then you've met one child with autism.'

But to me when I read that first quote... I got a little jealous. I got a little jealous because I thought, 'gosh, what I would give for Vicki to walk up and talk to someone. And tell them anything.' Even if what Vicki told them was about autism. (And I will save this discussion for another post when I am not quite as exhausted... )  Regardless, whether Vicki could say anything or not, I agree with Dr. Grandin's quote. And I think it's interesting because when you look at autism, you may see the rigidity. The repetition. The one track that a child's mind may focus on. And you (and I don't mean you, I just can't figure out the right pronoun to use :)  )  may look at the child's obsessions as something that needs to be fixed and overcome. But then you see stories about that child who talked incessantly about Thomas the Train, who later was able to work with trains. etc.... etc...

So often, well, everyday really... I just try to get through the day... so often I just have to focus on the the here and now because looking into the future scares the crap out of me. And even though Vicki is only 10, she is already 10. And those dreaded words are being whispered in my ear... transition planning... functional life skills training.... And I don't want to think about it. And I don't want to talk about it. And I will save a lot of my emotions about this for another post.... 

Geeze... I didn't mean to write about all of this. All I really wanted to tell you tonight was a cute, fluffy little story.  But the cute, fluffy little story lends very directly into the discussion about the future, about Vicki's future. At least in my eyes. What is Vicki fixated on?

Vicki loves food. I mean REALLY loves food. She is obsessed with food- in any way, shape, or form. She loves to look at cookbooks, especially ones with beautiful pictures in it. She steals my Taste of Home magazine as soon as it comes in the mail. :)  She used to be obsessed with Man vs Food episodes on TV. She loves going out to eat.

There is nothing, and I mean nothing, better than watching Vicki enjoy food. It always reminds me of that movie Ratatouille. That little rat when he picks the mushroom and pairs it with the cheese and the lightening strikes it. Anyway... when you watch Vicki eat... it really is an experience. I have never seen anybody enjoy food like she does.

Vicki does not have a typical 10 year old child's food palate. She loves salads and vegeshables. :) She loves kiwi and asparagus. She loves good food.

And recently, she loves going shopping with us... perusing the fruit and vegeshable isles... picking up the fruit and smelling it. Over the last few months she has really gotten back into all things food. And I love it. When she is in the kitchen with me helping to prepare dinner,  or when she is baking, or when she is unloading bags from the grocery store... I love watching her. And lately, I've really enjoyed trying new recipes and buying more exotic foods to have in the house. (and by exotic foods I mean instead of canned green beans, I will buy a spaghetti squash.) Sometimes when I am at the store I will buy something just because I know it will light up Vicki's face when she sees it. And seeing Vicki's face light up because of a pineapple, well, I really can't describe it. It just makes my heart so happy. It makes me so happy to see Vicki engaging and loving things again, even if it is a cantaloupe or a pineapple or an avocado. She is with me. Right there with me. I can ask her all kinds of questions about that fruit and she will tell me. What color it is, if it is big or little, if it is soft or hard, if it is hot or cold.

And most recently... gosh, I really wish you could see this... She will come home after school and open the fridge... and if she sees new foods in the fridge, I get the best, best, best squeal of glee. And she will pick up that cantaloupe or butternut squash and she will smell it. And she will smile a little Vicki smile. And she will hold the fruit up in her hands away from her body high in the air. And she will smile at it. Every time I see her do this, I imagine a podium with a trophy on it. And music in the background with the angels singing 'ahhhhhh' and a spotlight shining brightly on Vicki and that beautiful cantaloupe. Seriously. It really is the best thing in the world to see. And I will never, ever look at fruits and vegashables again the same way. :)

I want to thank Vicki for reminding me how fun it is to cook and create and try new things. We don't always have to order pizza or have soup and chicken nuggets for dinner... When Vicki is in the kitchen all covered in flour stirring the dessert she is making... well, it's perfect. She is the masterpiece that my husband and I have created.

Stay tuned later this month... my wheels are spinning and I have an idea...

And tonight I will leave you with a quote from Ratatouille, that Gustov was one smart chef.

"You must not let anyone define your limits because of where you come from. Your only limit is your soul.”
xoxo

Day 9. Year 3.

Disclaimer about tonight's post... Subject matter is of a bit more personal nature than usual.... My apologies ahead of time if I offend anyone with my terminology or descriptions.

Tonight I wanted to talk about growing up. Growing up with autism.

I really have no right to speak on this subject, because I have know idea what it's like to grow up with autism. But, ironically, autism has made me grow up more as a human being and as a mom than I ever thought possible.

My son will be 13 next month. My youngest daughter will be 8 this Sunday. And Vicki will soon be 11. It's crazy to me how fast they grow up. Sometimes I look back at pictures and think that it was just yesterday... other times it feels like it was a lifetime ago that the were babies. Wow.

Anyway... the point tonight is not to get all misty eyed and reflective, but to talk a bit about puberty.
Just the other day Joey and I were in Five Below,  a favorite store with my kids... and he was looking in the book section. There were 2 books that caught his attention. A book with a blue cover that was titled, 'Just for Boys' and a book with a pink cover that was titled, 'Just for Girls.' He actually paused and quickly glanced through the boys book. Then he surprised me a little by asking if I would buy both of the books... he said that maybe they would be good to have and maybe Ally would like to read the girls one someday. So, I did. I figured... hey... maybe there is something in the books that the kids don't really want to ask me, their old mom, about. And if they read about it, cool. I try to be very open and frank with questions the kids may have. I also try to be George, Bob, and Larry. (ba-da-bing). I thought that was a lot funnier as I was typing it than it is now to go back and read it. ;) 

What was my reason for starting this conversation... oh. yeah. Tonight I measured Vicki for a new bra. (I thought about the books because there was a section on buying the right size bra in the girls book.) Anyway... Vicki has been wearing bras since Jan 1... I think it was 2+ years ago... Is that right? I don't know... but anyway... I remember the day because I thought, New Year, new stuff... It was one of those things that I thought and thought and thought about before I did it. I had no idea how Vicki would react. Sometimes I forget (and this sounds terrible....) that she is a young girl. I don't want it to sound bad, but I worry about how all of these things associated with puberty will affect Vicki because she has autism. And I tend to forget that it's not just about autism, it's also just as much about Vicki as a young, developing pre-teenage girl and how it affects her. Autism just makes puberty a bit more tricky.

So, where was I.. When Vicki started wearing bras, I opted to get her a sports bra. I thought it would be easiest type of bra to get used to. And just like Vicki does, she took it in stride. Mommy was freaking out. Vicki just let me put the bra on her. And from that day on, she's worn sports bras.

Well... she has developed quite a bit in the past 2 + years... and I am thinking it is time to make the switch to a different type of bra. One with a bit more support. So, I measured her tonight. And it went pretty well, actually. She giggled and laughed. She thought it was kind of funny. And although I knew her boobs were getting bigger, not until I measured her and did the math... wow. Just wow.

So, of course, now I am stressing about what type of bra I should get her. I'm pretty sure she doesn't need a padded bra... and I think the front closures would just be something for Vicki to pick at and play with. I think under wire would be too uncomfortable. So, I think I will just try a few of the normal, latch from the back bras... Then I think, satin-ish or cotton? Oh the choices... Vicki doesn't do well trying things on in stores. So I think I will just go grab a few different styles and have a bra trying on party some evening... Here's hoping that I learn Victoria's Secret. Oh my gosh... I just realized that Vicki is a Victoria. And autism keeps so many parts of Vicki a secret from me.  An interesting musing that I have made... yes... indeed. :)

So, bra discussion done. I'll let you know how it goes... I just wish I could ask Vicki what feels the best, what she would like. Sometimes she does ok with choices and other times she doesn't. I don't know if she knows what exactly I am asking her. I wish we could read the 'Just for Girls' book together and just talk. You know?

Let me tell you a few other things that I was quite worried about that Vicki ended up taking right in stride... Hair. It starts sprouting out from everywhere. I often wonder what Vicki thought about it when she first discovered it... I remember she had 1 or 2 hairs in the beginning and she would pull and tug at them every time she went to the bathroom. Because I can't really talk to Vicki about what to expect, it was just as easy to show her. Mom has boobs. Vicki has boobs. Mom has hair. Vicki has hair.

So, last summer... I don't know if those of you who have read in past years.... remember when Vicki was a Junior Bridesmaid in the wedding of one of her wonderful therapists... Vicki was going to be in a spaghetti strap long dark pink dress.. And I wanted her to be all fresh and clean when she would lift her arms up. I don't think it would have bothered Vicki if she had a lot of hair under her armpits... but it bothered me enough. I was bothered for her. I was vain. And for months and months leading up to the wedding I was trying to figure out how to be successful at this task. And try not to freak Vicki out too much. Or freak myself out too much. Too late for me. :) 

I tossed around tons of ideas... well, technically there are not tons of ideas. You pretty much either shave your pits with a disposable razor, an electric razor or use a hair removal product. Shaving scared the crap out of me. I knick myself too much when I shave my legs to feel comfortable shaving Vicki's arm pits. And I was not going to give Vicki a razor. I am, and will probably always be, nervous around things that can cut. Scissors, knives, razors... I think even if Vicki hadn't cut her hand so bad a year and a half ago, I would still be paranoid. After much deliberation and stress, I finally decided to try the Nair removal method. And I figured that since imitation works extremely well for Vicki, that I would use it first on me and then put it under her arm pits... We would Nair together. The very first time... I had to have my husband come in and help me hold up her arms. I'm sure she was afraid and unsure. It was hard to wait the 2 minutes before you rinse it off. But then we did. And the hair... was magically gone! I spared a few details here, but on the whole, a very successful first try and Vicki looked fantastic in her bridesmaid gown. :) 

The second time went much better. The third, even better. Now when I get the Nair out, Vicki holds up her arm herself. It helps that she likes the smell... which I don't understand... I think it's a very distinctive, icky smell. But there is fruit on the bottle... I think the fruit is blueberry and mango. So it makes Vicki happy. Happy and arm pit hairless. Another puberty thing kind of taken care of.

I know I wrote about the first time Vicki got her period (I will not rehash that)... it's not even a big deal anymore. And the fact that she is on a very low dose birth control pill now recommended by her endocrinologist... helps even more. I know exactly the day and time she gets her period. It is much lighter than it used to be and Vicki seems to be a little less up and down hormonally than she was before the pill. It doesn't surprise her when she gets it and she doesn't care when it is done. I fretted for years over this one.

I know we have more hurdles ahead of us, but I have to say... for an 18 year old's body, and a young child's mind... my Victoria has found her own way to get through puberty, autism or not. And she's keeping that one a secret. :) xoxo

Day 8. Year 3.

Some days I am surprised that my blood pressure is in the 'normal' range. And it's odd... because so many of the things that I worry about don't actually happen. I'll just have a moment. A moment where something triggers a slow panic inside of me. I think the best way for me to describe this to you is to just describe little parts of our day in as much candor as I can.(Sorry if it's too much information!) So you can see a few of the moments for yourself. And maybe you can see a little bit more of the routines that I don't even pick up on anymore because it's just become a normal part of getting through the day.

A look at very basic part of our day broken down by what I am thinking as I go through it:

Monday morning.

First day back to school after a week off for Spring Break.

7:30 am. Go into Vicki's room. Turn the light on (The light switch is on a dimmer that is mounted on the wall on the outside of her room because many years ago Vicki wouldn't let us turn the lights out for her to go to sleep. So we came up with a way to dim the lights down very low so it mimics darkness but still allows her light switch to stay in the on position.) Give Vicki her visual schedule for the day. Say a little prayer. Drape myself over Vicki next to her and tell her good morning. Don't go right in for a kiss because she likes to keep the covers up over her head while she is snuggling Layse Black Cat. Put the visual schedule in front of her. Some days Vicki looks up smiling and starts saying her schedule right away. That's a positive note that the morning is looking ok. But, that can turn on a dime. Today she kept the covers over her head and said no.

Uh oh. Not a good sign. I feel the slight tug of panic. I push it aside.

I start talking her through her schedule. Monday. April 8. Mommy. Take a Shower. Car. Joey. School. Home. Medicine. Old medicine. Breakfast. Calendar. Call of the Wildman. Car. School. Home. (Attendant's name). Walking. Old medicine. Yogurt. Working. Reading. Homework. Exercises. Dinner. (And by this time if Vicki hasn't seemed interested, she will perk up and say, 'We're making.....' and then repeat what I say.)  Phew. It worked this morning. Let out a sigh of relief. Chicken. Potatoes. (and Vicki chimes in butter, cut, salt) and cauliflower. Toothbrush. Dessert. And she says, 'Cookie. Chocolate Chip cookie' and she smiles that slow Vicki smile. Medicine. Old medicine. Clean-up. Bed.

Then I pull her butterfly rainbow blanket gently off her and she jumps out onto the floor beside the bed. She sits cross legged with her schedule and Layse Black Cat in her lap. I start making the bed. Then I notice that the sheets are soaked again. So instead of making the bed, I strip the bed and crumple the wet bed clothes up at the top corner of the bed. Vicki says, 'Spray' and I go get the Lysol. She promptly holds her nose and I spray her mattress down. (This doesn't cause me as much anxiety as it did 7 months ago.) The first time her bed was wet after Vicki started having all of this trouble with PANDAS... I tried to get her to go through her morning without making the bed, because I knew I had to change the sheets. She wouldn't move off of the floor. We worked through it the first few times and now this is kind of her secondary routine, because like I said before, I have had to wash the sheets more often than not in the mornings lately.

After I spray the bed, I shut the light off. That's her cue to get up off the floor and follow me into the bathroom. She pulls her pants down and throws her diaper in the garbage and her pj pants in the laundry basket. If she pooped she will stand up and say, 'Mommy wipe' and then sit back down. I check her project lifesaver band that she wears 24/7 around her ankle. Wait for the red blinking light to say the battery is good to go. Then sign and date the sheet the police provide for me. I get undressed myself and jump in the shower. Vicki sits on the potty while I shower. As soon as I shut the water off and open the curtain she takes her pj top off and jumps in the shower. I assist her with the soap and shampoo. As soon as I shut the water off she says 'pink towel' Today she did have a pink towel to use. Sigh of relief from me. Because the first time all of the pink towels were dirty since her PANDAS stuff started, it was not a pretty site. It took me quite a while to convince her that she could use the princess towel and it was ok for it to be 'different'. Pink towel was dirty. And then Vicki would say, 'different. Maybe tomorrow.' And I would agree. So, I get out of the shower (and yes, I have a favorite color towel that I use myself, I like green. But... the difference is... if the green towels are in the wash, I am ok with a blue towel or a pink towel. It doesn't throw off my whole day.)
I start getting dressed, and yes, I guess I have a particular way I usually get dressed too... for the most part. As soon as I reach for my bra to put on, without pause, Vicki jumps out of the shower and sits on the toilet again and she uses her pink towel almost as a little red riding hood cape. :)  It's actually very cute.

When it is Vicki's turn to get dressed, the conversation goes like this (from Vicki). 'Panties. Spray (a good smelling spray we started using to stay fresh. too much information?) Bra. Deodorant. Smell. (and she likes to smell the cherry blossoms deodorant). Pants. Shirt. And if I try to go in a different order... I get a ' No!!' from Vicki and some yelling. Some mornings I will have her talk about the colors of her clothes as she is putting them on and make her assist me more Other days, I am just praying to get through this..... Because one year ago this part took 3 hours to do. And don't think I ever forget that. Any slight hesitation with Vicki... and I can feel the panic slowly rise.
Anyway... once she is dressed, she asks for 'apples' which is the detanglar we use. She loves the different smells and fruits we use in the shower. Such a girl. :)  But last year... if we had run out of one shampoo and had to use a different one.... it was not easy. And last year... if I tried to put her in different colored underwear other than white.... it was not easy. And for a while if I tried to put a shirt on that wasn't red, or her 'iron man' (superman) shirt on.... it was not easy.

It takes me a while to work through her curly hair to get it detangled. She is a trooper. I choose a color for her hair tie  and a style for her hair. Today it was pink. And I put her hair in a ponytail. (Remember... last year... it had to be red. And it had to be 2 red piggytails. Pocahontas.). After I finish her hair, she asks for necklace (the one Ally got her) and glasses. She grabs Layse Black Cat and her schedule and heads downstairs.

After we get home from dropping Joey off at school, Vicki goes to the kitchen and takes her medicine. First- clear syringe full. Then- pink syringe full. Then- orange syringe full. Then I empty 2 capsules into a little bowl and use the most fantastic pill crusher to crush up another pill. Vicki throws the empty capsules in the trash and then gets 'baby food' from the fridge. I mix the meds up in her Fruit Medley baby food and she takes exactly three bites. She grabs her Capri sun and goes to the snack closet and gets out a granola bar. I hold my breath. Because I just remembered that the nutra grain bars and the nutra grain yogurt bars she likes... I am out of. She was yelling the other day because she couldn't find them. And I forgot them at the store. Crap. I stand back. And she chooses a peanut butter dipps granola bar. Phew. Let breath out. Yay Vicki!!!!!   :) She eats her breakfast and does calendar and then asks for Call of the Wildman and pulls out the princess books and cookbooks she likes to look at in the morning onto the couch. I relax for a minute. We did. it. I help Ally get some stuff ready for school. Then when it's time to get in the van, I shut off Call of the Wildman and tell Vicki that it's time for school. I hold my breath again. Hoping that she will stand up from the couch and walk out to the van. It was slow going this am, but she made it. Sigh. Phew.

Then I felt the panic rise a bit again... Oh no. It's really warm outside today. I need to hide her heavier purple coat. Where is her purple sweatshirt? Crap. I can't find it. Now what. Will she get out of the van without a coat? Arggg... Shit.

Vicki gets in the van and puts her seat belt on. Ahhh... I see it, it's on the other side of her seat. Phew.
At school her aide helps her out of the car. 'Vicki. It's warm out today, you don't need to put your sweatshirt on.' Vicki puts her sweatshirt on. And I know, at least I think I know, her aide feels the same way as I do... ok. Vicki can have it her way today. Let's just get inside the school. We will deal with the jacket issue another day. And we will have to figure out how to be ready for that fight. And... oh... no... it will soon be shorts weather. Here comes the panic.

Wow. When I write it out like this, I think... holy moly. We are rigid. Yes we are. I guess. And this is something I struggle with everyday. How rigid is too rigid? What do I fight? What do I let go? How much of it is still PANDAS? How much of it is autism? How much of it is Vicki? How much of it is me?

What do I need to change? Want do I want to change? I set little goals every morning. But the biggest goal during the school year... get all 3 kids to school on time. And, for the most part, I've been successful with that this school year. So even thought this schedule might sound odd to some people, it works right now, this minute, for us. And for that... I give myself and all of my kiddos a pat on the back. It was not easy to get to here.

Yes, I like routines too. Yes, I have favorite ways I like to do things... I guess what I struggle with all of the time is how much do I allow Vicki? What is the difference between me and Vicki? If something changes... if 1 variable is off... will that make or break the morning? Maybe. Maybe not.

Do I have the fight in me? Does Vicki?

Do I give Vicki enough credit for being flexible? I know that I don't. See. She did it this morning. She ate a different granola bar. It didn't break us this am. But it could have. It would have 9 months ago.

And I think that's one of the hardest things for me to get through... I know how bad it was. And I know how bad it could be again. Fear. It's crazy how it can control me sometimes. I know what could happen. I know what did happen. I pray everyday that it doesn't happen again.

Could we have gotten into school if I couldn't find her purple sweatshirt jacket? Maybe. Maybe not. Am I relieved that we found it? Absolutely! Am I looking forward to the day when I don't let her take it into school? No! Am I looking forward to the day that I have to get her a different sweatshirt? (This one is getting mighty snug!) No. I am not.

Do I give Vicki enough credit? I need to. I need to start trusting her more. Not trusting her more... but believing in her more again.

It makes me think of a line from one of Ally and my favorite movies... 'Never let the fear of striking out keep you from playing the game.' No, it's not from the Babe Ruth Story. It's from Cinderella Story. :) I need to remember that quote. And live it. xoxo

Day 7. Year 3.

Do you want to hear something kinda sad? For those of you who read my post last night... I wrote, in a nutshell, about not taking moments for granted. And not telling my kids, 'later', 'give me a minute' 'hold on a second'. And you know what? This morning I was in my just woke up sleepy mode. I grabbed my coffee, sat in my comfy office chair, and turned on my computer.  And Ally came in and, for goodness sakes, she can just wake up from sleep and be hopping around, talking a mile a minute.  And she asked me to do something... and I hear myself say, 'hold on a second, Ally. Can you just give me 5 minutes this morning?' Did I not learn anything from my post last night??    Anyway... maybe I did, because I put my coffee down and 20 minutes later, whatever it was Ally wanted us to do, we had done, I think I may have slept through it... but it mattered to Ally that I did it. So maybe I did learn something after all...?

We went to a birthday party today; It was a beautiful spring afternoon for an outdoor party. I always worry about functions. No matter what type of function it is. If it's something out of the ordinary, I worry. If it's something with crowds, I worry. If it's something outside, I worry. If it's ..... well, you get the picture. I tend to worry.

This kind of goes back to my post last night too.... about being afraid. About making excuses. About knowing what could happen, and have an arsenal of things to draw from that have happened....

So, when I was putting Vicki's schedule together for today, I thought about that. And it's terrible of me. Because sometimes I think, 'Vicki won't miss              (insert activity here) because she didn't even realize that it was a possibility for us to do. She doesn't know what's she's missing or not missing.' I could really use that 2 hours today to get some laundry done and get our taxes ready. I don't know what to expect from Vicki today. I know I am tired and worn out from spring break. Vicki would probably be happy just chilling out today. Just put a movie on, give her some cookbooks, and let today just ride out. But I knew I didn't want to do that. I want some moments. And I wanted to enjoy some moments today.

So, I put car, birthday party, dinner, and cake on Vicki's schedule today.  I went in Vicki's room to wake her up, she usually asks for her schedule and then I lay down beside her and we look at it together. And when I did... she just started crying. And it made me really sad. :( I thought... maybe I shouldn't have added things to her day today. (Vicki likes to go through her outline of the next day's activities the night before. So after midnight last night when we got home from our trip and Vicki laid down to go to bed, she told me a little mock up of her Sunday.) And I had forgotten about the birthday party... so we didn't talk about it. Then this morning... I put those few different things on her schedule, and when she started crying... it made me sad. But of course, I don't know why she was crying... Anyway... we talked about her schedule for the day, which usually makes her happy. She likes to choose the movie she wants to watch, and talk about what kind of food she wants to eat for the day. She asked for 'Wreck It, Ralph' for the movie. And I told her 'something different' because we had just gotten Wreck It, Ralph on DVD a few weeks ago and we have watched it way too many times, I didn't want it to become an obsession, which it seemed to be becoming... And when I told her 'something different' she started crying again. And she just said, 'Wreck It, Ralph' in such a tear induced state, it made me even sadder. We talked about different movies that she might want to watch today, but she kept going back to 'Wreck It, Ralph'. And I started thinking. Ally loves to watch that movie now. Joey is into that movie now. They all like to watch it. So, why not allow it again?

I really hate trying to figure out what to do, with something as simple as a movie choice. I know it seems silly. Why spend so much time thinking about what movie she chooses to watch? But like I'm sure I've said before... it's so hard to figure things out. Where do I draw the line? We have little laminated 2x2 squares of every movie we have that Vicki watches. We keep them in a 3 ring binder on Velcro pages. We have a sheet that has a movie choice on it. There are 6 squares. And for a while, I was using that. I would put 'movie choice' on her schedule and then Vicki would choose from a list of 6 movies. That way, we were constantly rotating through movies and she wouldn't get stuck on just one and become obsessed with it. Then we stopped using that. Because Vicki suddenly stopped wanting to watch movies. And when she decided she wanted to watch movies again, she seemed to be doing a good job of rotating them herself without the picture choice board. I'm sure I need to bring that back again... because she has been getting stuck on movies again lately. And sometimes I don't even realize when something is becoming an obsession again. 

But today. You know... I keep thinking about things... I am afraid to introduce new things sometimes because Vicki adopts new routines so quickly. She remembers everything. Things that she did 2 years ago that I had completely forgotten about that she wants to do on the same day 2 years later. If we do something spontaneous, because I want to reward the kids for something good, or if I am just too lazy to cook a meal because of after school schedules, I have to stop and think. Do I really want to do this? How hard will it be to break this? Is it even worth it? It's the little things... that become big things... that become obsessions... that turn into behaviors.... that cause tantrums.... that make life extremely difficult.

So this morning... these are the types of things I think of as I hash out whether to say yes to Wreck It, Ralph again or not. I probably shouldn't. Behaviorally I know what will happen. But today, Vicki's tears got the better of me. Why can't she be consoled by something familiar that makes her happy? So, instead of saying, 'something different' for her movie choice again, I said, 'ok Vicki. Wreck It, Ralph' And I think, oh crap, I am sure I am messing up. But sometimes, you know what... I just want to make my child happy.

Gosh, where was I going with this today???

Vicki got out of bed and we got a shower. We moved on through the day. We got to the car and birthday party and I said a little prayer to myself... and took along my lucky charm husband, just in case, and one of Vicki's aides. There was a nice breeze. The sun was warm. Vicki enjoyed a hamburger, a hot dog, kiwi, watermelon, and strawberries with a cheesecake spread on them. And a yummy blue velvet cupcake that made her tongue blue. She said happy birthday to the birthday girl and got 2 hugs from friends. And laughed and smiled and wanted to swing high on the swings. Ally made a new friend at the playground. Joey and Daddy played a little football. And I thought to myself... No. The laundry did not get done. The taxes did not get organized. I barely unpacked. But, guess what? We made some moments today. And hopefully, we will make some more moments tomorrow. And hopefully I will get some laundry done or we will be making those moments naked. :)  The evening ended with a happy Vicki watching Wreck It, Ralph. There is no one I would rather be than me. (A great quote from Wreck It, Ralph. ) Maybe that's what Vicki was trying to tell me this morning when she was crying. There is no one I would rather you be either Vicki. xoxo

Day 6. Year 3.

Well... I am finally back home, sitting in my comfy office chair, yelling at my slow computer, and drinking some yummy instant coffee. Normal things really are comforting. There is nothing like sitting down with your favorite coffee cup and enjoying some quiet time alone with just the hum of the computer fan when everyone is sleeping.

But, as always, after a beautiful few days away from the world, it's a little hard to come back to reality, and it's a little sad too. It's the post-vacation letdown. Sigh.... All of the things we got away from for a few days are staring me in the face again. Stacks of papers to deal with, lots of meetings to prepare for, research to do for some equipment Vicki could benefit from, and arggg... taxes to do, laundry to catch up on, unpacking, birthday parties to plan, first communion for Ally to prepare for. Oh wow. This is too much for my sleepy, post-vacation brain to handle. I think I'll just drink my coffee, finish this post, and go to sleep. There is always tomorrow.

Hopefully there will be tomorrow.  And I can start tackling some more of my to-do lists. ;)  And after the other day's post, I will make sure I add some I-did-it lists as well, for me and Vicki and the other kiddos too!  I'm feeling a little, I don't know, tonight... On our spring break travels we drove past the Newtown/Sandy Hook exit. And it just made me pause and think and say a little prayer. A little prayer for my little family and for those families that lost so much back in December, and families that lose so much everyday. And it makes me think how glad I am that we took the kiddos away for a few days, put down our to-do lists and made some memories instead. It's so hard as an adult to do that. There is always so much we need to do, should do, feel responsible for doing. And at the end of the day.... well... did we hug our children enough? Did we listen enough? Did we tell them how much we love them? Did we show them how much we love them?

I know for me it's so easy to make excuses. I have excuses for everything. I am a champion excuser. I find myself responding to things my kids say with , 'later'. 'Give me a minute.' 'hold on a second.' And then when I look back on the day, I realize that later never came, a minute turned into an hour, and the kids are still holding on.

I don't want my kids or my life to give me a minute. I want to take that minute and just do it. Hey. Nike got it right. And at 38 years old, maybe I am just now starting to understand.

I know this post was a random one, but I've been thinking about these things a lot, and today really drove it home for me. Hey, we did drive home! Both figuratively and literally! :)  I just want to add one thing tonight though. I also don't want autism to be my excuse. And believe me, it's an easy one to use. 'We can't come. It's too hard for Vicki.' 'No, we didn't make it to church, Vicki just couldn't handle it today.' I'm not saying that it might not be true. Maybe Vicki is having a really hard day. And maybe Vicki can't really handle it. But, maybe, just maybe, it's me having a really hard day. And maybe I can't really handle it. And maybe I am just scared. Or tired. Or just exhausted from trying to plan it all out to go smooth. And autism is a good out for me.

Another way that I look at things.... autism will NOT take making memories away from us. It will NOT prevent us from doing things as a family! I will NOT allow it to stop us from living. Vicki isn't stopping us. Vicki makes living so much more. So much more alive. So much more entertaining. Just So. Much. More.

So, on that note, I will continue this jumble of thoughts tomorrow. Hopefully. xoxo Good night!