Day 7. Year 5.

Gosh... sadness seems to be permeating this blog so far this year. I'm sorry. I just try to be honest. And honestly, I am sad quite a bit. But I also like to smile, so that balances things out. :)

So on Tuesday... I decided to try to break up the day a little bit. Ally had been wanting to see Cinderella at the theater. I figured it was a good day to go and see it with Ally still hobbling around on crutches and Joe still coughing too much to go sit in a movie theater. And Vicki was ready to get out of the house and into our van. I was able to get one of Vicki's aides to come up and go with us. Girls afternoon out. Perfect.

Vicki seemed really excited to go. She wore a pretty pale blue shirt and she wore her hair down, long curls all around her face. She wanted some make-up on. We were going to see Cinderella. We were going to do it right. :) She looked so lovely, with a little bit of blush flushing her cheeks and she wanted some red lipstick.

Off we went. Giggly and excited.

And that ends our happy event.

I think one of the things that scares me the most is the unpredictability of it all. I know a lot of people probably think I am too much of a planner when we go out. Always wondering and planning for the 'what ifs'.... But I learned long ago, that if I didn't have a contingency plan, I would be in trouble. On the days when I think Vicki will struggle, she does amazing.  On the days when I think an outing will be a walk in the park, it is not.

Ally and I got out and bought the tickets. Because Ally was hobbling on her crutches, I needed to give her a little extra time. So we went on ahead. I thought Vicki was on her way out of the van with her aide. Nope. She was sitting in the van. She knew what we were going to do, it was there on her visual schedule. She had seemed excited. But when it was time for her to transition. She just didn't. And when Vicki doesn't want to move, Vicki won't move. And there is not much we can do about it.

So, I took Ally in and got popcorn and seats. I kept texting with Vicki's aide. Nothing. She wouldn't move.  :( The movie started. Still no Vicki. I ended up running out to the van to see if I could get her to come in. Nope. She was happy as a clam just sitting in the van. (I've often wondered where that phrase came from, are clams happy creatures?)

Ally and I enjoyed the movie. Vicki's aide sat with her in the van for the course of the movie.
And then we came home. And that was that. It made me sad that Vicki didn't go into the movie. But I was glad that Ally and I got to enjoy it together.

It's so hard sometimes. This is just one small example of any given day. Why do I freak out with my plans so often? Because of days like this.... If I didn't have an aide with me, Ally and I would not have been able to go to the movie. By the way, the guy behind the counter at the theater was very nice and refunded our money for Vicki's and the aide's ticket price.

I can never assume, even on a good day that something as 'easy' as walking into a movie theater will be accomplished.

I'm sorry this post isn't witty or funny or full of wisdom. It's just a day. But I will leave you with a quote, from Cinderella, of course:

"I want to tell you a secret that will see you through all the trials that life can offer. Have courage and be kind." 

I always want to have the courage to continue to open doors for Vicki to explore the world around her. No matter what the challenges are. Just because this day was not a good movie theater experience does not mean I won't ever try again.  And no matter how much something may test my patience... I always want to be kind. And smile. It's a good reminder. xoxo

Day 6. Year 5.

Some days I just get really sad. Monday was one of them.

Spring Break Week.

We typically take a little vacation somewhere... and we usually end up at a beach. Vicki loves to ride in our van.And she loves the ocean.  Especially when it's Vicki, Ally, Joey, Daddy, Mommy. Gosh, how I wish (doesn't everybody...) that we had unlimited funds and unlimited time. The places we would go and explore. Sigh.

Anyway... not the point of this post. We had planned on taking a little trip up to PA to spend a few days with our families this year for Spring Break. But that didn't happen... With Ally stubbing her toe so bad we had to take her to urgent care on Easter for x-rays...she ended up on crutches, of course... And Joe's asthma deciding to flair up with this Spring weather... he must be coughing at least 30 times a minute. Lots of new meds and nebulizer treatments for that kiddo.  Anyway, with 2/3 kids kind of out of commission, we decided to stay at home for a little stay-cation, rest-cation, get better-cation.

Vicki was confused. She knows we usually travel somewhere over spring break. She loves the van.
And now we weren't going anywhere... and we had no plans. A week of just chillaxing.

So, why was I sad? I guess it was because I looked at what Vicki did all day on Monday, and it seemed so... nothing. And that made me sad. It also got me thinking.

Who am I to say what someones day of chillaxing should look like? I know what I consider relaxing (actually, I don't know what I would consider relaxing anymore...) would not be the same thing my husband considers relaxing. Joe's relaxing is not the same as Ally's. And Vicki's isn't the same either. Why am I judging what makes her happy and relaxed?

For Joe... playing video games all day is relaxing. For Ally... doing crafts is relaxing. For Daddy, watching home improvement shows is relaxing. And for Vicki... what did she do? She loves to sit in our pink rocking chair by the front picture window and look outside. She could sit there for hours. And she does. She stares at the same page in a cookbook. For hours. She loves to look at my toes. For hours.

Why do I get sad? Maybe because she looks so vacant so much of that time. She doesn't speak. She doesn't look at me. She just stares. Blankly. I never see her smile.

And I think to myself... I want to help her so much. I want to make her smile. I want her to enjoy life. I want her to be engaged and interactive.

Maybe, just maybe, though... I should just let her have her own form of chillaxing. Maybe just one day I shouldn't analyze it. Maybe she finds it peaceful. Maybe she's found joy inside. I hope so. xo

Day 5. Year 5.

I'm going to admit something. I love looking at holiday and family pictures that people post. Every single one of them. I loved seeing all of the Egg Hunt and Easter Bunny pictures and big family photos of everyone sitting around a table full of yummy food. I love hearing the stories that people tell of their family escapades.

I love it all. But, sometimes I get so jealous of it all too. I wish and I envy.

 I know a snapshot is just what it is. It's a snapshot. It's one second of a moment in time.

I know that oh so well... One of the interesting things about social media is that you have a certain amount of control over what people can see. Maybe you show them what you want them to see. That's one reason why I love digital cameras. Out of hundreds of pictures I take... there are a handful of them that I really like. And those are the ones you see. There's that one picture that takes my breathe away... say, Vicki's looking right at the camera and smiling a genuine smile that reaches her eyes. She looks so present. She looks so happy. And that's what you see.

You don't see all of the other ones... the ones where she looks vacant. Where she looks sad. Where she is crying. Where she is sitting on the floor because she won't get up and move. You don't see those. I don't want you to see those.

I try so hard to find the positive and the good in every day. And I try not to dwell on the bad and the difficult.

But sometimes... when I see my facebook feed loaded with smiling, happy children, and lots of busy family get-together s... I shed a tear or two. I know that everyone has struggles. And most people show you what they want you to see. You capture that one second of pure bliss. And then all the kids get grumpy and start yelling at one another. You don't post a picture of the burnt bread you made.

Sorry, I'm not really sure my point tonight with this post. I just know that we shut ourselves off from so much because it's so hard. It's hard enough just getting through a day here at home... to add in different houses with different issues that Vicki has, with the exhaustion that accompanies it all, sometimes it's just easier to hole ourselves up in our house with our little family. And the hour and 20 minutes it took to get Vicki to to walk outside for the backyard egg hunt wasn't witnessed by anyone else but our little family. And the vacant look that was in her eyes when we tried to get her to look at her Easter basket, we only saw that. And the tears. We didn't show that to anyone.

I am grateful. I really am. And I am thankful. And I need to remember to be thankful for that one snapshot, that one moment. And celebrate it. xoxo

Day 4. Year 5.

I will not let crazy life events prevent me from keeping up with this blog this month. I will not let crazy life events prevent me from keeping up with this blog this month. :)

So, before I get way behind again, I will keep this one short and sweet.

Interaction.

Social engagement.

Autism.

Family.

Love.

Have you ever played that word association game?

I thought a lot about these 5 words over the weekend and how they all tie together. It may not be a perfect bow some days... but they are all intertwined. Braided together.

I just wanted to share a few interactions with you.from Saturday. We went on a drive. One of Vicki's favorite things to do. We were backing out of our driveway and I hadn't buckled my seat belt yet. Vicki noticed. "Mom. Seat belt. Mom. Mom. Seat belt." I bucked up and thanked Vicki. She smiled.

We were walking down the street. Vicki has an intense fear of animals right now. She gets so anxious. Sometimes she freezes. Sometimes she screams. Sometimes she tries to bolt.
This time, I could see her squeeze her Daddy's hand tighter as she saw the dog. And then she said, "Joe. Joe. Hand. Joe." And she grabbed hold of her big brother's hand with her other hand. She had her Daddy on one side of her and her big brother snuggled up close by her, protecting her, on the other side. She made it. She felt secure and comforted by her family. And that made me feel so happy for her.

She asked Ally for help when she needed her shoe tied. She said, 'Ally double tie please. Double tie."

I love how Vicki shows her love to everyone in our family. She loves us. She trusts us. She is comforted by us. She feels protected by us. And she protects us as well. And we love her.

Told you. It was short.

But those few words she uttered. They were powerful and speak volumes of her love of her family and her family's love for her. xoxo

Day 3. Year 5.

I never really know what I'm going to write about until I sit down. Sometimes it's just something that happens during the day that gets me thinking.... Today it was hearing "The Gambler" by Kenny Rogers on the radio. Yes, I am going to admit this... The Gambler is one of my all time favorite songs. :) I know every single word of it. And I'm pretty sure that I sound amazing singing it. (Ha! You know how there are just some songs that my you feel like you can really sing? This song is one of those for me.)  I'm not sure what it is about this song that really speaks to me. Maybe it's the fact that when I was growing up a lot of people told my Dad that he looked like Kenny Rogers. Maybe it's because I made a mixed tape when I was young for my Dad to listen to as we were driving up to our camp on the weekends and this song was on it.... I still get shivers on my arms when I really listen to these words. So, just in case you have no idea what I am talking about.... here's a bit of the lyrics:

You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done

Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
'Cause every hand's a winner
And every hand's a loser
And the best that you can hope for is to die
in your sleep

I'm not sure what this song has to do with my post tonight. :) Wait. Of course I do. This song is about behavior. And behavior is something I think of all. of. the. time. I am not a behavioral analyst, I don't have a degree in it. Heck, I know that I don't even parent with the basics of behavior in mind sometimes. Someone could analyze every move I make and just shudder. And some probably do. ;)

I talk about Vicki's behavior so much. We have meeting upon meeting upon meeting.We look at behavior plans. We look at the functions of her behaviors. We look for appropriate reinforcers.  We look at the data. Look for the extinction burst. And so on and so forth. I wonder sometimes how many hours per week I spend talking about Vicki's behavior. The numbers, I'm sure, are mind-blowing.

I see behaviors with Vicki one day... and the next week they are gone. Then that same behavior resurfaces again 2 years later. I could go on and on about behaviors... how difficult of a study Vicki is. She's tricky. Tricky Vicki. Some days I feel like there are a zillion functions for a single behavior of hers. She is a brilliant young girl. I never underestimate her.

This is meant to be a very generic post tonight. I don't want to get heavy into behaviors right now... because to be quite honest, this past year has been one of the most challenging in dealing with certain behaviors. I have cried myself to sleep on many occasions. More than I care to admit. It's hard to watch. It's hard to live through. It's just hard.

Sigh... what's my point? Well, as I was listening to the song tonight... it made me think about the battles I pick. And the behaviors I choose to fight day in and day out. I know when to fold 'em. I know when to walk away. And I know when to run.
Don't we do that with all of our kids in general? Maybe I don't fight with my 14 year old wearing shorts when it's 35 degrees outside anymore... Maybe I let my youngest get away with something that I know I should take a stand on... And with Vicki, it's so hard to be 'on' all of the time. When you put a behavior plan into place... it should be followed for every instance of that behavior. I'll be honest. Maybe I'm weak. Maybe I'm just tired. Maybe I just want a break. Maybe I just need to give our family an easy night. Maybe I should have held them, but instead I folded.  

It's funny... today wasn't a particularly challenging behavior day. (Phew). But it was just on my mind for some reason. Every thing Vicki does is on my mind. Pretty much all of the time. I constantly ask myself 'why?' What is she doing that for? Why did she start doing this? How do I help her? What can we do? Some days I worry so much about her just sitting down because I am never sure if I can get her to stand back up again.

Anyway.... Every hand is a winner. And every hand is a loser. The best that I hope for is to get a smile on her face. xoxo

Day 2. Year 5.

I really wanted tonight's post to be long and meaningful and beautiful. I had it all planned out.  But, it's not going to be any of that tonight. Sorry. :( I will save that for a day when I can type without significant pain.) Yes, I am silly. In between our many after school activities today... from weight training at the high school for Joe, to guitar practice, soccer practice, and a book fair for Ally, and the post office, grocery store, exercises, picnic dinner watching Ally play soccer and a visit to the book fair at Vicki's old school for Vicki... I ended up tripping on a step and landed on my knee and outstretched wrist. It hurts more the older you get! Sheesh. My wrist is aching something fierce tonight and typing does not feel great. I did get a splint for it, and the doctor said the x-rays showed no fracture on my wrist, just a sprain. Phew.

Anyway... I will change my focus of this post tonight.... to talk about one of my biggest fears.... and that is the fear of me not being able to take care of Vicki. It scares me to the core. What happens if something ever happens to me? I know I'm not the only one who can do things for Vicki. But, I am the one who can do them the best. Am I conceited? Nope. Not at all. We all know our own children better than anyone else knows them.

I know Vicki. I know Vicki like the back of my hand. Ouch. Silly me. It hurts to turn my wrist right now. ;)

I know that the world wouldn't stop spinning if something happened to me. But I do think that Vicki's world would spin slower. When I got a stomach virus in January and was really sick one morning, Daddy took over Mommy duties. All the kids were thrown off. Especially Vicki. I did shower with her and get her dressed... and I did her medicine because no one else has done those things in years... but me. But when Daddy went to take her to school... she cried. And cried. And cried. And when she got to school the teachers told me that she sat on the floor for over an hour and cried and said Mommy.

I know that Vicki needs to be able to accept alternatives and changes in routines... But I also know that by having the consistency of me... it helps her. At least I hope it does. It helps lessen her anxiety. I know that she likes the blue stripe on her bed blanket closest to her head and the pink stripe by her feet. I know that she has a particular order she gets dressed in in the morning... I know what she means when she says certain phrases.

Especially since her Panda's diagnosis (3 years ago now! wow...) I have stepped up even more in Vicki's day to day tasks... Is that good? No. Not all of the time. Every day for 3 years I have showered with her in the morning to get her to go through her daily care routine. Every night for the past 3 years I have been the last person she sees at night before she goes to sleep. Is she dependent on me? Absolutely. Am I dependent on her? You bet.

I'm sorry. I've about hit my max tonight. Such an anticlimactic post. Such is life. Life always throws us curve balls. It's how we catch them that determines our strength at playing the game. Love you all. xo

Day 1. Year 5.

Happy April! Here we go again.!!! 2 thoughts right off the bat.... yes, I was horrible last year, never finished my 30 days because I just couldn't talk about a lot of stuff. And I was trying to play catch up a few weeks ago, because I don't like to just let things go.  But, do we ever really catch up? So, I'm just starting fresh. Day 1. And second thought: 5 years!!! I can't believe it's been 5 years since I started this blog. So much has happened. I started this when Vicki was 8 years old. She's 12 now. . Wow.  And guess what?  I'm getting older too... I was 36 when I started writing this. I'm 40 now. My point: I bet I repeat myself a lot. You probably hear the same stories, the same complaints, the same issues. I can't remember what we had for dinner last night anymore. Ha! So, forgive me if I said the same thing last week, or last year. ;) I feel a lot of the same feelings day after day. So I write about them. All of the time.

I always have trouble diving into a new year of writing. Where do I start? What do I say? I figured I would start with today. That's as good of a place as any.

Today I want to talk about Vicki's Voice.

I always get butterflies in my tummy the morning of April 1. And not the good kind. The kind that makes me think... why do I do this? Why when I live autism day in and day out do I make the choice to consume myself with writing about it too.? I see my posts and think... why do people want to see that? I change my profile picture to "April is Autism Awareness Month" and I feel like I can hear the groans from people... oh, not again. Why doesn't she just shut up about it? I think the same things.

And then I sit down and really think about why I am writing. It's therapy for me. It takes me out of the moment and lets me look at things from afar for a second. You know when grandparents haven't seen their grand-kids for a while and they say, "My how they have grown." But you don't see it, because you see them everyday. They just look like they did yesterday to you. Well, that's kind of what it feels like to me with writing about Vicki. I talk about the same things day in and day out. Vicki struggles with the same things today that she struggled with 5 years ago. Things come and go. And we revisit so many old issues... Honestly, it gets depressing. But that's what I'm talking about.

I stepped back this morning and really looked at Vicki. I was thinking about her talking. And I wrote down everything she spontaneously said to me from the time she got up til the time she went to school today.  Here it is, Vicki's Voice:

"Women Bathroom. Lamp off. Wait. Wait. April Fool's Day. Smell the strawberry. Smell banana vanilla. No. No. Make yellow. Vicki Deodorant. Smell the apple. Smell the coconut. Mom. Clean glasses. Soft Layse. Medicine. Socks and Shoes Please. Mom make the smoothie. Raspberry and 5 strawberries. Mom crumb. Mom. Crumb. Throw away. Windy. Bye Mom. Love you. Teeth. Eeee. Smell my hair."

That to me is beyond beautiful. It's simply amazing. It's Vicki's Voice. She doesn't need to say a lot to say a lot. But she says so much. She tells me so much by telling me what she is telling me and what she isn't telling me. Wow, I don't know if that made any sense. :)

So, that's it for today. I don't want to write so much today, that I  have nothing to say the next 29 days... and can't make it so long that you won't want to finish reading it. ;) If you are still with me, thanks!!

If there is one piece of advice that I can offer, it's.... listen to your child. Really listen to your child. It's amazing what you can hear. A voice is such a beautiful luxury. Love you all! xoxo