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

Day 24. Year 4. (not really... but I want to finish last years numbers!)

Hi!!!!!  Because the month of April is fast approaching and I am gearing up for year 5 of this blog... I wanted to get back into the swing of writing. I never finished last year's posts. (And I really hate to leave things undone!) To be honest, it has been harder and harder for me to write and open up. I want to write with honestly and really share Vicki with all of you. But sometimes I can't even put into words how I feel. And when I do, it's heartbreaking all over again. I experience things once with Vicki and then relive them in my mind and my writing over and over. And I feel like I just come off whining or wanting pity. And I don't like that feeling.

Being completely honest... this has been a really hard year. I don't want to sum it all up right now... because if I try to, I will just quit writing after a few minutes and never publish this post. So I will tell you how things are going right now.

As a mom... no matter if your child has autism or not, sometimes you just get that feeling in your gut, like something just isn't right. I have that feeling. And I've had that feeling for some time now... and it keeps getting stronger. Sometimes I think about things so much and dissect Vicki's behavior so much, that it consumes me and takes over my life. Yep. That's about where I am right now.

Sometimes it's big things that happen that make my mommy senses tingle. For example, Vicki has been sick a few times this winter. She hardly ever gets sick. She is usually my 'healthy' one.  But she's thrown up .. back in January and again this past week. Sure, she could have just your average, run of the mill, stomach bug. I am probably overreacting. But I always look deeper. I don't know why... maybe because she can't tell me what she's feeling. But something just doesn't add up to me. It's all of the little things. Little changes in behavior. I will just sit and watch her. And when you watch close enough, for long enough... something is different. Or I am just going crazy. Autism can do that to you. ;)

I don't really know what's wrong. There could be so many things.... She's been crying so much lately, especially the last few months. Crying. A. Lot. And it's that heart wrenching cry where she screws her face up and just sobs... oh it kills me a little each time I see it. Yes. I know she will be 13 in May (yikes!!!) and that it's perfectly natural for teenage girls to cry a lot. I just feel like it's more than that.

And with her PANDAS... over the past year it's been a roller coaster... she'll have a flair up and then things seem like they are settling down and chugging along. And then, another bad spot. We are back to difficult transitions. Like 2 hour transitions.Transitions so hard we are fearful when she goes to sit down somewhere that we won't be able to get her up again. And we can't.  Could it just be her acting out? Just wanting to control something in her life? Yes. It could be. But I just feel like it's more than that.

Her OCD has been very difficult at different times this past year. So much so that she would add little things to her day like tapping her foot 100 times before she took her medicine, or turning the pages of a magazine so many times... Eating got to be so difficult. 2 hours for her to eat. It all ebbs and flows. She follows her routine to a T. She needs it to function. And sometimes the only way for me to get through one certain activity was to mess with her OCD... start doing something else in the wrong order or the wrong way, so she would move on. And you know what scares me now?? I did that the other day, and she didn't care at all. Not. At. All. And that is highly unusual. I should be celebrating that... but instead it's another thing I can't stop thinking about.

And her body posturing.... she hunches over so much. And she's been grabbing at her chest a lot. Maybe she is just noticing things more... or she is just more sore, or growing.... But I think... is it something with her medicines? She takes so many of them. I hate it.  Does she have heartburn? Is her stomach upset a lot now? I don't know. It's just so odd. And yesterday she asked for dentist and ice cream. I had her look at some of her visuals just in case she messed up the word... because usually we pair ice cream with a successful blood draw. And sure enough... she chose the blood draw visual. Is that her way of telling me something is off and she knows it? It really freaked me out. Or, it could just be that she wanted ice cream. ;) Or that she knew we had to get blood work done sometime soon. (Which we did.) So we took her today to get it done. At least maybe that will shed some answers on this. But it's so hard because even though her team of doctors knows everything that's going on with her, it's hard to investigate things with her.

Well, that's all I have tonight. I  have to sit down and write some more updates to Vicki's doctors so we are all on the same page. I am anxious to see what the blood work shows. Anyway... thanks for listening. It felt good to write some of it down. I'll be back again soon. I plan to finish up the last 6 posts before April starts.... I will let you know what comes of all of this. Until then, I would really love for you to keep Vicki in your thoughts and send a few extra prayers and lots of love to her this week. I wish we could just go and see Dr. House. ;) I really miss that show. (That was random.) xoxo

Day 23. Year 4.

I didn't forget. I really didn't. But I did have to go back and re-read my last post on here... I tend to come back to writing when "big" events happen. The last time I wrote, it was Vicki's dance recital and elementary school graduation. Today it was Vicki's first day of ESY (extended school year) and it was transitional, she went to her new middle school! After 9 years at her elementary school, my sweet little girl is growing up.

It's very interesting to me. I have to give myself credit for one thing... I am consistent with my feelings. I was thinking about her transition to the middle school today and how stressed I was. Then I looked back at my last post... and the same feelings are there. I think, in general, big events, new things, make people nervous. Butterflies are a normal part of taking risks. Vicki is scared of butterflies. The real ones. She had a butterfly land on her a long time ago and she is really not into flying insects of any type. Especially after last year's locust fiasco. Anyway... Vicki doesn't like real butterflies... I wonder if she ever gets fluttery little butterflies in her tummy? I wonder what she thinks the night before the first day of school? We talk about it with her visual schedule...I wonder if she thinks about it? Gosh I wish I knew what she thinks.

Anyway... YES. Vicki always surprises me. ALWAYS. I think that some people think I'm crazy when I stress over things with Vicki. I always get... she'll surprise you, she'll be fine. And I hope and pray deep down in my heart that they are right. And... drum roll... Vicki was fine going to her new school and meeting her new teacher. She was more than fine. She was spectacular. Amazing. Unbelievable. I couldn't have been more proud of my sweet girl.

So, why was I so worried that I couldn't sleep? And was feeling sick? And ran through a thousand different things that could happen or could go wrong?  I know you can't prepare for everything. And I understand that. But I will try. Why? I am not trying to set my sweet Vicki up for failure... I am always trying to set her up for success. But Autism has changed me. Changed me so much that I don't even recognize myself sometimes. Why do I anticipate a catastrophe? Because they sneak up on me when I am not expecting them. They blindside me.. They confuse me. They have me so scared and afraid that I never take Vicki anywhere by myself anymore. I plan. I plan so much it is ridiculous. No one should have to plan every single step you take to get to the library. I do. I plan it with such careful consideration you would think I was diffusing a bomb. And sometimes I am. I haven't written about some of the difficulties lately... I haven't wanted to. But if you knew the depth of despair that I see in Vicki's eyes sometimes... or how much I cry, or she cries, or how it took 2.5 hours to get out of the van one day. Or how Vicki sat on the kitchen floor for 8 hours one day because of some behavioral issues. Then maybe you wouldn't think I'm crazy for worrying so much. Or trying to plan so much. I just want Vicki to be happy. BUT... sorry I am way off topic.... I am CELEBRATING today!

I feel like Vicki is running a race sometimes. Like she's a hurdler. She started a new race today in her new school and she came out strong. She sailed over the first few hurdles. Didn't even touch them. She was so happy. Like... Vicki happy. The happy that I haven't seen in many months. The happy that reaches her eyes and makes her giggle with her own personal jokes. They happy that touches her lips and makes her skip. She is such a fighter. She inspires me day in and day out. Whatever hurdle she faces, she faces head on. Some days she stumbles, and some days she flat out knocks them over. All I pray is that I am there for her to offer her a hand and pick her back up and brush her off. But right now. This minute. She is kicking some ass in her race. And I couldn't be prouder of her. I will take today and cherish it. Go Vicki go!!! Thank you for cheering her on with me. I love you all. xoxo