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

Day 22. Year 4.

I posted a facebook post yesterday morning, and tonight I thought I would talk about it. Here's the post: "It's so easy for me to just shut my little family up in our house and not try anything that might be difficult for Vicki... sometimes I do that, but times like this weekend... we put it all out there and give it a shot. If you could send some good thoughts Vicki's way so that not only can we be present and attend these activities, but that she will enjoy them and be happy and flash that Vicki smile. We have Vicki's dance rehearsal today and a ceremony tonight for Ally to bridge from Brownies to Junior Girl Scouts. Tomorrow is Vicki's dance recital and on Monday Vicki will be participating in her 5th grade graduation and then in the evening we will all go to support Joe at his 8th grade Assembly. I am a big ball of nerves and tears. Better go get my camera charged and myself charged."

So here it is, Sunday night. We are 2/3 days done. And I thought I would try to be pretty honest in this post tonight with how things are going. Writing it all down really helps me to put things into perspective too.

The first thing I want to say is how very proud I am of Vicki. One of the things about autism is that I really have no idea what she is feeling inside. So many people have asked me if she has ever sat down at the computer to try to type. I'm sure a lot of you have heard stories about how young adults with autism have sat down at a computer screen and was able to type, type out their feelings and give themselves a voice. Yes, I admit, I have tried this with her. And she loves to type.... but so far she will only type about food she sees on pinterest. :)  And right now, that's good enough for me. In face, it's phenomenal. Because by even just describing the food she sees, she is giving me so much insight into the way she thinks. Anyway, sorry... I digressed. What I am trying to say is that feelings are difficult. And behavior is difficult. And how one feels directly impacts how one behaves. And feelings are unpredictable. Therefore behavior is unpredictable. And that's about it. I know Vicki feels. And this weekend I'm sure she felt a lot. Sometimes, the things that I fret about the most, the things that I think are going to be the most difficult, end up being just fine. And I let a big sigh out not even realizing that I am holding my breath. And then something happens. And I know Vicki feels and she reacts. And then out of nowhere I am blindsided with a behavior, a reaction, that I am not at all expecting. So. That's life. It all ebbs and flows. This weekend I have gotten that coveted Vicki smile. I have gotten to see the sparkle in her eyes. But I've also seen some of the most gut-wrenching, heartbreaking displays of utter.... I don't even know what to call it... But when I see it, when Vicki reacts with it, it hurts. So deeply that it feels like my heart is physically breaking for her. 

Just to clarify a little bit, without going into too much detail tonight, because frankly, I am emotionally exhausted and I know we have one more really big day ahead of us....

Vicki danced. :) 

You know, maybe trying to write a post tonight wasn't the best idea. I want to share more. But I don't want to. I want to give you the feel good post about a little girl who put on her sparkly pink dance costume and had beautiful curls bouncing in tight ringlets around her twinkling bright eyes.  She did. And her hair was bouncy. And she smiled. 

But I don't want to tell you the deeper story, about what else I saw on the stage. If you were sitting beside me in the audience, you may not have seen it or felt it, but I did. 

It's so hard to know if what you do for your kids is what your kids want you to do for them. You know? For all of my children, I want to give them the opportunity to try lots of things and make the decision for themselves what they want to do and what they don't want to do. With every fiber of my being, I believe Vicki loves dance. I believe that she loves putting on the costumes and the make-up and she loves the music. 

But sometimes I see the fear and the pain and the anxiety and I question myself. Sometimes I look at her out there on the stage, and I look at her posturing and I look at her aide assisting her. And I think, am I doing the right thing? She holds her ears so much anymore. To the point where if she is raising her arm I can see her shoulder come up ever so slightly so she can block some of the sound to her ears. And it's what everybody else doesn't see, I didn't even see it tonight because I wasn't backstage with her. Vicki's OCD tendencies come out in full force, especially when she is anxious about something. Let's just say that I hate that she is a slave to her memories. That's the best way I can think of to describe it to you. She knows exactly what she did last year backstage at the recital. She knows exactly what movies she watched on the portable DVD player. She remembers every last detail. And she needs to recreate it. Even if she doesn't want to. She needs to. And, it is so hard to watch. The yelling. The pain in her eyes. The dropping to the ground. The anger. The yelling. Over and over again. 

I take a lot of pictures. A lot. And I will post the cream of the crop for you. I will post what I want you to see. But, and I know I've said this before... For every 1 picture of Vicki smiling and engaged, there are 100 pictures of her vacant eyes looking far away and the smile that never quite reaches her lips. 

But if I don't put Vicki out there sometimes... give her a chance, let her experience it all.... then what? She will sit on her couch, hold her cookbooks on her lap and just stare off into space. She will not connect with living. And in living, you grow and you learn. 

I have a lot more to say about some stuff that happened after the recital... but... I still have 8 days left to write. I'll save that one for another day. Thanks for listening. As always. 

Thought I'd leave you with some of the lyrics from Vicki's dance recital piece:

Sometimes I fix things up
And they fall apart again
Nobody's perfect
I know I mix things up
But I always get it right in the end
You know I do

Next time you feel like
It's just one of those days
When you just can't seem to win
If things don't turn out the way you planned
Figure something else out
Don't stay down, try again, yeah!

Everybody makes mistakes
Everybody has those days
Everybody knows what, what I'm talkin 'bout
Everybody gets that way

Day 21. Year 4.

I figured that after my last post, I better write a follow-up to the movie incident. To sum it up, I will sing you a song from Dora the Explorer. Ready?
We did it. I did it. She did it. Hooray! We went to the movies to see Rio 2. Yeah! We did it. I did it. She did it. Hooray! We walked in. Sat down. And we stayed the whole time. Yeah. We did it. I did it. She did it. Hooray!

A very dear friend of mine had been privy to a lot more of my verbal stress and sadness and anger and self pity and all of the other feelings that came out in my last post. And she sent me a text. "Have a little faith in yourself."

It's so true. Faith in myself is something that autism has stripped me of. And dare I say that after Friday, maybe just a little sliver of faith as been restored. Not much. But a little bit. I left that movie theater feeling as if I was the most awesome mom in the world. My pink, sparkly supermom cape was flapping in the wind and my feet weren't even on the ground. And there you have it. The highs and lows of autism. The gamete of  emotions that I felt... all to take my children to the movie theater.

Just wanted to tell all of you thank you. Thank you for reading. Thank you for praying. Thank you for your kind words. It means the world to me to have so many people who care and believe in me and believe in Vicki. Lots of things helped to make the movie a good experience... from the fact that Vicki was having an 'on' day and she was happy and really wanted to go see Rio 2 to having my son agree to come with us (for the small price of a box of recees pieces). Ally and her friend were so well behaved. And it happened to be the last day for Rio 2 at this theater and we were the only 5 people in that theater. So even though we had a few little glitches, it was only noticed by us. Had my son not gone with us and stepped up, I don't think the trip would have been as successful. I had to have him take Ally to the bathroom in the middle of the movie. If he wasn't there, I don't think I could have gotten Vicki to get up from the movie and transition to and from the bathroom. With about 20 minutes to go Vicki got really fidgety  and was a little louder... but again, we were the only ones in the theater, and that definitely made me feel more comfortable. After the movie my son stayed with Ally and her friend so they could make another stop to the bathroom and I took Vicki to the van because she was getting upset and almost dropped on me. Thank goodness for the handicapped parking pass and yet again, for my son. But all in all, the outing went very well. And after I got Vicki into the van and tucked my supermom cape into my purse, I let out a sigh of relief. It's amazing that one can hold their breath without realizing they were holding their breath. I will take this one victory and celebrate it today.

A happy Ally and a happy Ally's friend. A happy Vicki. And a happy Joey (who enjoyed his recees pieces). And a grateful mommy. I may have even smiled and laughed a little during the movie and danced along to some songs.

And I will leave you on this beautiful Sunday morning with not just the Dora song to get stuck in your head, but also an oldie and a goodie from George Michael.
You gotta have faith, faith, faith
You gotta have faith. Baby. 

Day 20. Year 4.

I'm going to apologize for a few things upfront. First, I am sorry that I haven't finished up my 30 days (in April) in a timely manner. So many life things have gotten in the way this year. I've started multiple posts but haven't been able to finish them, either because of circumstances or because I couldn't dig deep enough mentally to finish them. If you just stick with me, I promise I will get there this year. :)  And second, I had decided a few days ago to give up on some of the tougher posts and do a lighthearted one. I love talking about Vicki's accomplishments. BUT, this is not that lighthearted post either. This is me. Ranting. And being frustrated. And being angry. And having a pity party for myself. I apologize ahead of time for it... But right now, at this moment... I need to write this. For me.

Why does everything have to be so planned? So hard? So scheduled? I get so sick of having to do it. Now I'm not a very spontaneous person  in general. I like order and things flowing well. And I understand that to be organized and have things flow the way you want them to takes time. Time to plan. But right now.... I am so frustrated. And here is where I am going to hold my breath and stomp my feet. Why does every. single. thing. have to be so damn hard? Every. Single. Thing.

All I wanted was to have a fun Friday. Ally has been conspiring all week to have a friend over today. So it was all planned out. Her friend is going to ride home with us after school. We would swing by home quickly and have Vicki take her medicine and then we would go to see Rio 2 at the movie theater. Vicki's behavioral specialist was set to accompany us. Done. Easy peasy. At least in theory.

Well, apparently there was miscommunication with the company we work with. And although it was a go last night, I was misinformed. It was not decided that the specialist would accompany us to the movies. I got the phone call a little while ago saying that they couldn't do that. They could come up and give her a social story and then leave. And then leave me with Vicki and Ally and her friend at the movies. Well, now they are not even doing that. And I have been sitting here for the last hour crying like a baby. Yes, I know it's ridiculous. There is no reason to cry over a movie. But it runs so much deeper than that. This rant isn't about a movie. It's about life. Life with autism. As much as I want to say things are all rainbows and hearts and flowers. It's not. Sometimes things just suck. And it affects everybody.

I have no idea what I am going to do about the movie today. I tried to get in touch with my husband at work to see if he could come home early and go with us. Leave work for a movie. It sounds so stupid. Maybe I could just chance it and hope that Vicki is 'on' today. I may try to take my son and see if he could watch the girls in the theater if something goes wrong with Vicki. And I don't have an aide that can work today. There are still options. But they all make me nervous. And the last thing I want to do is not go to the movies. Not only would Vicki be upset with the change in her schedule. I think she really wants to see Rio 2, but also I would have 2 little girls who were looking forward to today... very, very disappointed. And it shouldn't be this hard to take my kids and a friend to the movies.

I'm sure a lot of it is me. I know it is. But with autism, and with Vicki... and life in general... you just can't predict anything. Things may go perfectly well today. And things may go horribly wrong today. I guess that's with anyone or anything in life. But with Vicki.... I feel like I draw on past occurrences a lot. I know what has happened when I have had 2 aides with me going to the movies, and it has been difficult with 2 other sets of hands.  And I know that if my husband is there, things always go smoother. It's Daddy. What if she? What happens then?

But one of the things that is really starting to bother me is that I feel like I can't do anything by myself anymore with the kids. And that's really hard for me to admit. I can't go anywhere with just me and the kids. I need someone. I need my husband. I need an aide. I need a behavioral specialist. Maybe I am just so scared anymore. Because I know what has happened in the past, and I know what could happen. And I can't handle those things by myself. But then again, it could go perfectly. Who knows. I feel like I just need somebody to hold my hand and be there for the what if's... and I know that's not fair either. But until you've had a child who throws themselves down in the middle of the street or parking lot and won't get up and you can't lift them up anymore... it's hard to say not to worry. And there are other things too....

I understand where companies come from too, I really do, even thought it's hard when they say they are sorry for the inconvenience. I am so jaded sometimes. I love a good social story. I love a good behavioral plan. I love goals. I love data. But sometimes that's just not enough. The data is skewed. What looks like it will work on paper won't work in real time. There are always other variables that you can't account for. That's just life. And they are only here for x amount of hours x days a week. What about the rest?

Sigh. I think I ran out of steam. I think that's it for me for now. I'm done crying. I'm done stomping my feet. I REALLY REALLY appreciate you reading this and listening to my crazy rant. I will file my feelings away for the moment and hope that something amazing happens and we can all go to the movies. What a victory that would be. For me. We shall see.

You know, a good rhyme always helps. :)
Love you all. xoxo

Day 19. Year 4.

It has been a very long and stressful week this past week and I've been too overwhelmed to write.I'm sorry. I've started a few posts, but haven't had enough emotional strength to finish them.I will work at them this week.  But tonight I really wanted to write. So here goes my Mother's Day post.

I am a sucker for handmade cards and coupon books, hand picked posies from outside, and breakfast in bed made by my sweeties. I savor it all. And I am one lucky Momma for getting it all today. This morning Joey and Ally brought me breakfast in bed (once I promised to go back to bed after I searched through garbage bags with gloves on because Ally had thought I had thrown away her Mother's Day gift to me when I emptied some stuff out of our van the other day.) Needless to say I didn't find it in the garbage. But by 8 am I had relived the last week of our garbage... oh so many memories... AND got the van cleaned out and even swept it out. So that's good. After all that, I found the bag sitting on the stairs. ;) Back to my day... my strawberry smoothie was super yummy. I got to play in Ally's garden with her and plant some flowers then she picked me some pretty pink and purple flowers and put them in a vase for me. And the ring holder that I looked for hours for... Ally had spent so much time picking it out for me and wrapping it up. And she had a homemade beaded bracelet she made for me draped over it. She explained the bracelet's meaning to me in her card. On the bracelet she had put an autism awareness charm on it to symbolize Vicki, emerald colored beads to symbolize Joey (his birthday is in May) and 'diamonds' on it to symbolize Ally (her birthday is in April). Joe and I bonded over some music. And he was a sweetheart and did some laundry for me. Daddy took us to the pet store and I got to pick out 3 new fish for our saltwater tank. Seriously, the BEST present ever! We named them Alex, Marty, and Melman. Oh, and we got a huge snail that we named Gloria. We went for a hike at a local Ford and then went out for a yummy dinner. I felt so pampered and so blessed to be able to celebrate today with my 3 babies who gave me the absolute best career in the world!

And let me tell you about Vicki. She made me a beautiful flower bouquet out of colored paper and pipe cleaners that she brought home from school. And the best part was that she colored fingernails on her hand-printed flowers. Red sparkles! Vicki had a so-so kind of day. It started out happy. She usually helps me make my smoothie in the am, but this morning I drank it before she got up. So she helped me make my coffee and a snack of oatmeal with blueberries and almond butter in it. :)  Vicki had also made a flower pot Mother's Day dessert for me (as did Ally. We have lots of yummy dessert here!) She loved putting gummy worms in the dirt. :)  Then we all sat down and watched the new Tinkerbell movie. She really liked it. After the movie, she started crying. And she had a really difficult couple of hours. Like I said in an earlier post, she's been talking a lot about her scar on her hand from a few years ago. She was very preoccupied with it this afternoon and was crying a lot and holding her hand. Finally I rubbed some scar cream on it and she let me massage and kiss her hand a little. It seemed to help some. She really enjoyed the hike and even though she had some behavioral difficulties getting into the restaurant tonight, she had a great time at dinner and loved her spaghetti and meatballs. And the restaurant gave Moms a free dessert tonight. Vicki was happy to take turns with Joey and Ally and Daddy and share my brownie and cookies and cream ice cream!

 I loved all of today. I will keep my memories and treasures near to my heart.

But let me tell you what I will remember most about today from Vicki.  I will remember how beautiful Vicki sounded when she said her prayers this morning. She recited the Our Father, the Hail Mary, the Glory Be and the Serenity Prayer. Her voice was so crisp and clear. She is my angel here on Earth.

I will remember what she said last night to me too, as we were discussing today's visual schedule. It was going to read, Mom. Take a shower. (Aide's Name). Medicine. Old Medicine. Breakfast. Working.... and so on. But as soon as I started telling her the schedule she looked up at me and said, "No. No (aide's name). Red pen. X. Red pen. Calendar. X. (I write Vicki's schedule on my wall calendar in red and when someone or something is cancelled, I put an X through it.). She kept repeating... 'No. Red pen. X. And then she looked at me and smiled and said, 'Mother's Day.' Mommy Day. Mommy.

That is literally one of the BEST things she has ever said to me. I know that she wanted to be with me on Mother's Day. Without a doubt. Of course, it could just be a way to get out of working, but that's ok with me too, as long as I am the reason. ;) So we cancelled her aide and just enjoyed the day together.

And that's just it with Vicki. Vicki reminds me everyday, not just on Mother's Day, that it's the moments that matter. That moment she said she wanted to X out the aide because it was Mother's Day and she wanted to spend it with me. She may not have said those words. But I know that's what she meant.  The little moments. Life is made up of little moments. And we need to celebrate them. Daily.

Happy Mother's Day to all of you beautiful mothers out there. I hope you were celebrated today. And that you had a chance to cherish your own little moments. xoxo

Day 18. Year 4.

Some days it hits me. Just how far Vicki has come. It was an amazingly beautiful Sunday yesterday. And we decided it was time for some yard work. For us, that's one of the things that's always been hard to do. It's really hard to try to do anything... even though I am a mom and I have eyes in the back of my head... I could never do a chore outside with Vicki. It took everything I had to keep her safe and doing something. Not to make this sound bad, but when Vicki is outside, it's never relaxing. It's like being on high alert all of the time. Never sure if she will pick up something off of the ground and put it in her mouth... etc... etc... The dangers are so many, I never even thought of half of them until Vicki would show me.

Anyway...  we had an aide yesterday for a while, which really helps. So I was able to go outside and start some work on the side yard with Joey and Ally even before Vicki came out. It was nice to get into a groove with the 2 of them. And to see them work together was such a nice treat. Ally has been working on making a garden spot for herself. We spent time raking leaves, turning over the soil and picking out rocks, cutting the grass, and installing a picket fence around her garden area. Joe put it in for her and Ally painted it. It was fun. And then Vicki came outside with her aide... she jumped on the trampoline and was so happy.

Later in the day, we came back outside, this time it was just my husband and I with Vicki and the other 2 kiddos. And it was just so... peaceful. That's not a word I typically use. :)  The nice breeze, the warm sun, Vicki swinging and laughing and smiling. It was just one of those moments that I want to tuck into my pocket and bring it out on a difficult, rainy day. Even though my husband and I still 'tag-teamed' with Vicki, we were both still able to do little things while we were watching her. We transplanted flowers, I raked and bagged more leaves. Vicki kept swinging and smiling and laughing. So often Vicki does't even want to go outside, and if she does come, she will just sit on the bench and stare off into space. I loved seeing how happy she was yesterday.

Lately Vicki has loved eating dinners outside. Some days she even requests 'white table'. She'll say 'white table outside. No brown table' (our kitchen table). She loves to just site outside on the porch and eat her dinner and just... relax. I really like that word. Relax. I think I may have done that for a few minutes outside yesterday. And that's pretty cool. :)

Sometimes it's just nice to reflect and be thankful. And that's what I'm doing today. xo

Day 17. Year 4.

Have you ever have a phrase or a word that your child would say... that you just knew you had to correct, but it was so darn cute that you let it go a little too long? I remember specific words that my kids would mispronounce, like Ally used to say 'psghetti, and cimininum', Then there were their go to phrases that just sounded so adorable, I can still hear their little voices saying them... When Vicki was little Joe used to get right up beside her and say, 'hi baby girl'. Now the words 'hi baby girl' don't sound all that impressive or memorable in type, but when I recall his cute little squeaky voice saying 'hi baby girl hi baby girl' over and over, it still puts a smile on my face.

Vicki has lots of words and phrases like that. And with Vicki, it might not be that she is mispronouncing the words, but that she finds certain words that make sense to her and honestly, the context is pretty close. I know the meaning she is trying to convey with them. I love hearing what she comes up with. And although I know some of the words and phrases become overused, and she verbally stims off of them, I just can't make myself correct her (for a while at least).

So for this post, I am just going to give you some of those phrases, pardon me if this post doesn't make much sense. It's one of those written brain lists for me. :)

When Vicki was younger, if she wanted to go for a ride in the car, she would always say, 'wheels'
Now she says, 'car, red van'.
Sometimes she will hear a word or phrase on a TV commercial... and use it in the right context. I specifically remember once when she was eating a bowl of soup, she said, 'Mmm. Mmm Good.'
When she gets a scratch or needs a band aide, Vicki will say 'boo-boo band aide'. And if she thinks it needs bacitracin or neosporin  she will say 'sour cream band aide'.
She's had many words for her anger over the years too... For some reason, when she used to get mad she would say, 'Granola.' or 'Strawberry Shortcake'. At one point she would say, 'stomp my feet.' I liked that one.
What spurred this thought process is that currently she is on a kick... when she is denied access to something, if I tell her no, she looks at the item and in a kind of irritated voice, she says 'Goodbye .... (item)'. Like yesterday, she kept wanting to steal my salad, and I told her she had to wait. She then says, 'Goodbye salad. Good bye.'

I'm going to tie her fantastic memory into this too... Let me blow you away with this one. Yesterday was the day (the first Saturday in May) that a year ago Ally made her First Holy Communion. Vicki remembered this. And she said, 'car. red van. communion.' I didn't even realize that she remembered the word communion! And, to even blow your mind more, Vicki was getting her nails done yesterday and right now she has rainbow colors on her toes from the beach. She said, 'pink toes. communion. pink toes.' I have no doubt in my mind that she had pink nail polish on her toes last year for Ally's communion. When we explained that we would be doing something different yesterday, she looked at her toes and said, 'Goodbye communion toes. Goodbye. Goodbye pink toes.' And we moved on. :)

Vicki always talks about herself in the 3rd person. So if she is asking for something, like the salad, she will say, 'Vicki salad.'. She does this for everything. It's very difficult to teach her pronouns. And honestly, I love how she talks.

I will leave you with one final story today. It might be a little bit of an over share, but it's funny. Vicki doesn't go to the bathroom by herself. Someone is always in there with her. And a lot of the times it's me. Sometimes we are in the bathroom for quite a while. And you know when you are denied access to something, it's inevitable that you have to have it? If Vicki doesn't have to go to the bathroom she will say, 'Vicki. No potty.No potty.'. After she stands up, I am already in the bathroom and have to pee, so I sit down to go. Apparently, one time, I had to do #2. And Vicki remembers that. So every time I go to sit down, Vicki says...no she yells... 'Mommy. No poopy! No poopy!' Every time I sit down. I can hear my husband walk by the bathroom door and laugh and laugh. Yep, we've even been in the handicapped stalls in public bathrooms together, she pees, then I pee. And everyone else in the room hears, 'Mommy. No poopy! No poopy!' I walk out of the stall and I can see the smiles tug on the corners of peoples mouths. :)  I am glad that we can put a smile on someone's face. I hope these stories put a smile on yours. Goodbye blog post. Goodbye! xo

Day 16. Year 4.

KEEP CALM and.... carry on. You know those memes, right? As a quick aside... I just googled it to make sure I spelled meme right and I started scrolling down the images. Did you know there are a gazillion memes out there using the Keep calm and carry on style? ;) I find a lot of them irritatingly dumb. But I giggled out loud (I just can't get myself to type that I LOL... wait, I just typed that. Ha.) for a few of these. So I thought I would share them with you:

Keep calm? Seriously? In this house?

I am Italian. I cannot keep calm.

I don't always keep calm, but when I do I carry on.

Now panic and freak out.

Keep calm and go to Target.

Keep calm and rub some bacon on it.

And my favorite:
Keep calm and write on.
So I will try.

I'm not sure I have a keep calm switch on my body. I wish I did. I tend to freak out easily. I tend to think about things too hard. I seriously feel like all of my nerve endings are standing at attention, like hair does when it is rubbed against a balloon. ALL. THE. TIME. Of course, it could be that I always have a coffee cup sitting next to me. ;)

I often wonder if I would be like I am today if I didn't have autism in my life. And I think I probably would be, to some extent. I am a worrier. Hopefully I am a warrior too. But I do worry. I'm pretty sure I would have an extra 6 hours a day if I stopped worrying so much. :) But I think when you have a child that can't be alone at all, that always has to be watched, that you always have to be on your toes for... it's hard to keep calm. It's hard to just let go.

What sparked my keep calm theme tonight? Well, like I said, I am a worrier. And I tend to notice a lot of little things. Because I pay so close attention to detail with Vicki, I notice more things than I probably would otherwise. And I don't like questions... Why is she doing this? What is that? How come she does this? And so on.... I want answers. And it's hard when Vicki can't verbalize why she is doing something. Even if she could verbalize it exactly, maybe there isn't a reason why she's doing it. Maybe whatever I am freaking out about is just.... just a habit, or just a child trying out things to see how things work. But I always read so much into the little things I notice about Vicki. Because history has told me that a lot of the little things that seem incidental and small, add up together in a big way sometimes... So I make sure we write down everything. Maybe something is the start of something else neurological. Maybe it's a side effect of a new medication. Maybe it's just something she saw or something she finds comfort in, or who knows.... But I know I definitely don't keep calm. :)

I worry about every little thing. Why is she talking so much about her scar on her hand now? Is it bothering her? Does it hurt? Why did she have odd little bumps on her right forearm a few weeks ago? Why does she seem to be picking at her arm, and her teacher even said she picked out a few hairs on her arm.Ouch. Why?  Why is she scratching at her leg? Maybe she just has a bug bite and she is picking at them again more.  It seems like there is more hair in her comb in the mornings when I comb her hair out after a shower. Why did she hold her breath tonight and roll her hands up and down her belly? Did she think it was funny? Is she playing around with her diaphragm? Will she remember to take a breath when I close the door? Is something bothering her? Why was she breathing so heavy when she was doing squat jumps and riding the stationary bike yesterday? Maybe because she was just out of breath from exercising!  Geeze. I am really a worrier. Why is she posturing her hands in more closed fisted positions? Why is she making a certain yell now? Why was she super echolalic last night? I feel like a 4 year old asking all of these WHY questions.

My new meme:

Keep cal.... wait. Why? ARGGGG.  ;)

Thanks for keeping calm and reading my blog. xo

Day 15. Year 4.

This might be hard for you to imagine. But I like to talk. A lot. I talk fast. I talk loud. I talk. And talk. And talk. I do like a little bit of quiet time... but not too much of it. We always have the radio on, or an air purifier going, or a fan on. It's never completely quiet in my house, or in my head. When we stay at a hotel, I make sure we have a white noise machine of some sort on in the background. I like background noise and so do my kids. That's probably the hardest thing for us when the power goes out. It's so eerily silent in each of our bedrooms. And it's really hard for me to go to sleep without noise. The quiet is very deafening to me.

Along those same lines, breaks in conversations are difficult for me to handle too. I always feel that I need to fill up the dead air space with words. Or I need to entertain, make someone laugh or smile... whatever it is... a quiet silence can be uncomfortable for me.

Why am I talking about this tonight? Because we are working right now with some specialists on behavioral modification stuff with Vicki. Taking data on the time it takes to complete a task. All of that good ABC data collection. To try to figure out what the function of the behavior is. What Vicki is getting or not getting out of it.  For example, we are timing how long it takes for Vicki to eat her yogurt after school. I'm not sure of the exact numbers but things vary from day to day... sometimes it takes Vicki 15 minutes, sometimes it takes her an hour to eat her yogurt. The specialist notes if we say anything to Vicki, if we prompt her in any way, or if something is reinforcing her that we aren't aware of. Does she like the attention, or the texture, or is she just stalling, avoiding the next activity on her visual schedule?

With as much as I've learned over the years about behavior, you would think I would be a pro at this kind of stuff. Not hardly. Like I've said before, it all sounds good on paper... BUT... it's one thing to experience it with Vicki for an hour a day, it's quite another thing to experience it 24 hours a day, 7 days a week. Sometimes I just want to speed it up. Sometimes I just feel like I know exactly what my daughter wants/needs and I want to give it to her. So badly. I want to say, 'Vicki is a good girl." because that's what she wants to hear. I know that because Vicki tells me that... She'll say, 'Mom turn. (to look at her). Mom, Vicki good girl. Mom. Vicki good girl."  And sometimes I know that if I say that to her, then she will take that first bite of yogurt and that hour time will decrease. But I can't be sure of that. Sometimes that doesn't work. Then I am back at square one. And it takes hours.

So I was talking about talking because it's so hard for me not to talk. To let the time go. To not prompt Vicki through something. To let the time go itself so we get some true data readings. It's so hard for me to sit there beside Vicki in silence. While she looks at me and repeats over and over again. 'Mom... Vicki good girl. Vicki good girl.' I want so badly to give her that reinforcement that she is craving. I have a tendency to repeat questions/requests if they aren't followed the first time. You know.... 'Joe.... come here please. Joe, can you come here for a second? . Joe... come here!!!!!!!!!!! Jooooooeeeee! What the h*ll are you doing??? ARGGGGGGHHHH... You know, right? :)

So when the quiet has to happen for Vicki... when I give her the one request/demand... it is so hard for me not to repeat it again and again. To wait. I am not a patient person. Waiting is hard. And to wait and not talk... yowza. That kills me.

One day I sent my husband an email. And he sent me a response... he said that he could have said what I said in my email to him in 3 words. I went back and counted my email... it was 68 words. And today I had Joe send a text to someone for me. It took him forever to send it... granted, I think my text was close to 30 words... and after he sent it, he looked at me and said, "You know mom, all you had to do was say, 'Yes. Mango.' Two words Mom. Two words. :)  I see a theme developing here....

Maybe I should take a cue from Vicki. She doesn't waste words. She says what she needs to say. Say what you need to say. She doesn't need to use all the fluffy words I write with. I thin k about that all the time.
Reminds me of that song that cam out when I was in high school...  More than words. By Extreme.

What would you say if I took those words away
Then you couldn't make things new
Just by saying I love you

More than words 

Vicki is so much more than words. And it takes her to tell me to slow down. Wait. Stop talking. Listen to the quiet, because it speaks volumes. xo

Day 14. Year 4.

So today is April 30. I should be on Day 30. But I'm on Day 14. Just about 50 percent behind schedule. That about sums up my life. ;)  For the few of you who have continued to read this year, I REALLY appreciate it! And I am sorry that it has been so sporadic this month. Like I said a few days ago, I will be continuing into May, until Vicki's birthday to complete the 30 days...

Yesterday Vicki had 2 different doctor's appointments. Sometimes we try to double up on things if we can so that my husband doesn't have to take as much time off of work. And sometimes I feel so useless. I wish I could take Vicki to her appointments by myself or with one of her aides.. But I can't. No one else can help her as much as her Daddy does during these appointments. His strength, both physical and emotional, is something I marvel at. The bond that he and Vicki share is an unbelievable one to watch and I feel so lucky and so thankful that all of my kiddos have such an involved and amazing Daddy in their lives. I just wish I could do more. He works. I don't. And I have to ask him to take work off to help me. Anyway... Sorry for diverting... I've just been thinking a lot about how lucky I am to have him. Sappy girl moment. ;)

Her endocrinology appointment went very well. Vicki is just shy of 5'5" now! And she has lost weight since last year. Her doctor was super pleased with her BMI. We are getting ready to schedule another sedated MRI; they have to look at a small mass that was next to her pituitary gland to make sure it hasn't grown from 2 years ago. The doctor is hopeful that it will remain about the same. I am not looking forward to the sedated MRI. I don't like seeing any of my children struggle as they wake up from sedation. It has always scared me.

Someone asked me how her doctors appointments went yesterday and my first response was... "it was hard." And I get mad at myself for generalizing the whole day as 'hard'. It wasn't all hard, in fact, some of it was downright amazing... yet... hard is the first word that comes to my mind. Why? When I look at percentages throughout the day... the 'hard' part was maybe about (ok... I have no idea how to do percents... I am not a math person) so I will say a low percentage of the whole day. Why is that the what I remember and focus on the most? :(

Why don't I look at how far she has come when she goes to the doctor? (With my husband and the routine that we have established with Vicki) she has done very well the last few visits. My nerves get the best of me and the what ifs? get the best of me. But Vicki... Vicki is doing darn good. Like at the endocrinologist's office... she took her shoes off when she was instructed, she stood on the scale and got her height measured and got her blood pressure taken. She sat so still and watched it. Then she let the doctor listen to her heart and even though she refused to lay down on the table, she let the doctor look at her tummy and she leaned back and stretched her arms over her head. All amazing things. Things she never would have done a few years ago.

But what did I take away from yesterday? The EEG prep. It was hard. And when I say hard I mean there is absolutely no way we could have gotten an EEG done without my husband. None. Before I get to that though, let me tell you something kind of cute. Sometimes I forget that Vicki is first and foremost a young girl. Not a young girl with autism. Just a young girl... An 11...almost 12 year old... who wants to do what all other kids her age do. Try to get out of things and try to manipulate situations. And I celebrate this so much! We were walking back to the EEG room and the nurse asked Vicki if she had to go to the bathroom. Vicki yelled, 'no potty! no potty!' And she stood still and we couldn't get her to budge... she would not walk into the bathroom. I knew she didn't have to go. But she was supposed to 'try.' Well, the nurse looked at her and said, 'Thanks ok. We can just go back to the room.' So we walked into the room and she asked Vicki to lay down on the bed. Vicki saw the bed and all of the wires and she looked at us and said, "I need to go potty. I need to go potty.' I knew better. So did the nurse. But she said we better go anyway. So I took Vicki to the bathroom.She walked willingly this time. Ahhh... it was the age old buying time trick. (Secretly I am laughing. Good one Vic!)

Anyway, we walked back into the room and we had the task of getting her to lay down on the bed. Again, thank goodness for my husband. I will skip the 'hard' part... and just say that I can't believe my husband stayed in the awkward position he had to be in to make sure Vicki was laying down flat.... for over an hour. He never stopped talking to Vicki and soothing her. I know he wasn't comfortable but he never once complained. Vicki held onto him for dear life. The hardest part for me is seeing the anxiety manifest so physically for Vicki. Her face gets beet red, I can feel her heart beating so fast as I lay my hands on her to try to soothe her too. The yells that come from Vicki are like no yells I hear any other time, and the worst... the look of absolute fear, no, terror, in her eyes.

We talk her through it. As the nurse was putting the wires on her head I would tell Vicki what color the wire was and I would talk through fruits and veggies that were the same color as the wire. The best part is when Vicki slows her breathing down and actually volunteers an answer. And then another. And another. And then we put her favorite DVD into the portable DVD player we brought. Thank goodness for old school Popeye. She absolutely loves the cartoon classics DVD. She giggles and smiles and even though she did not want to lay flat, she was calmer. She even liked blowing on the windmill for part of the test, and she thought the strobe lights were really funny, especially when they flashed super fast.

Anyway... looking back on yesterday now... I guess it wasn't terrible. We got through both appointments and she laid still enough for them to get what they needed on the EEG. I was ironing today and sometimes I turn our TV on when I iron. The movie 'Oh Brother. Where Art Thou?' was on. And the song came on, 'Keep on the sunny side. Always on the sunny side. Keep on the sunny side of life. It will help us every day, It will brighten up our way, If we keep on the sunny side of life...."

I guess I really needed to hear that today. The storms will recede and the sun will shine. We just need to keep on.
xoxo

Day 13. Year 4.

I talked the other day about "Vicki watching" and how it was the most the most rewarding activity ever. I love telling stories about Vicki. I love sharing little phrases she says and things she does. That stuff is so easy for me to share. But like I was saying in last night's post... it's hard sometimes to talk about the flip side. The heartbreaking side of "Vicki watching". I don't think I can adequately describe how I feel when I am "autism watching", when I am "PANDA watching", when I am "OCD and anxiety watching". And I HATE that all I can do sometimes is WATCH. All I want to do is take away whatever is hurting my child. And I can't. And sometimes I get so frustrated. And angry. And sad. And depressed. And that's nothing compared to the mental anguish that I am afraid Vicki is feeling.

Let me give you an example. I don't know if I can attribute this behavior solely to any one of Vicki's diagnoses.. and I don't think it really matters what crappy neurological thing to blame it on. What sucks is watching Vicki go through it. There is so much talk about finding the function of the behavior and doing compliance training... etc...etc.... It all sounds so good on paper. I do love data. I love graphs. I love fill in the blank answers. What I don't like is "all of the above" answers. Never did like them on tests. I can't stand all of the "always, sometimes, never, kind of, could be, who knows". I love sorting things into definitive categories. It's when something can be placed under a few different categories that I don't like. Which one do you put it under? Does it change the function?

Sorry... I got off topic for a second. The example. I can't remember how much I have talked about Vicki's eating. You all know that Vicki loves food. She loves smelling it. Preparing it. Everything about it. And I know she loves eating it too... But here's where the heartbreak comes in. She has been struggling. And I don't know how to help her. Or how to fix it. We've tried a zillion different things. Some things work sometimes. Some things work never. Some things just make it worse. One of the things we've always tried to do with Vicki is include her in everything we possibly can. We try to do as many things that we can as a family. Together. The 5 of us. And on Tuesday of last week it about broke my heart. We had to separate it. It was the 3 of them and the 2 of us. (As a side note and a topic for another post... I do try to make time for each child individually... and also plan activities for Joey and Ally so they can escape to something that is just theirs and not laced with autism. So I do understand the importance of that as well.. We made sure that I had some 1:1 time with Ally on the beach early in the mornings where we would walk and collect sea shells and talk. And my husband would take Joe out to the beach to play some football and take some big waves. We definitely do that kind of stuff... ) But for this example, it's just something we've always done together and to have to separate it... well, it was sad for me.

We have little routines that we build into our vacations. And Vicki actually does pretty good with them. In the mornings we sit around and eat breakfast and hang out, then we get our swimsuits on and go down to the beach. Then we head to the pool. Then we come back to the room and get showered and go do some other activities. Anyway.... it was breakfast. And maybe it's Vicki's addiction to routines or her OCD or whatever... but Vicki always asks to eat cereal, specifically Recees Puffs, when we are on vacation. I don't pour much into the bowl because quite frankly, I'm not sure she likes them all that much. I think it's just something she had years ago on a vacation and it has stuck with her. Anyway, the kids were chomping at the bit to get down to the beach. And Vicki was sitting at the table. Not eating. That's very common as of late. She wants to eat. She wants to move on to the next picture on her schedule. She just can't. For whatever reason it it, she just can't. She will go through her verbal scripts that she's been saying a lot lately... (I think I told you about the 'pink cut' story from when she cut her hand a few years ago.) She goes through that whole story. And she keeps adding onto it. She will pick up her spoon with cereal and milk on it. And she will put it up to her mouth. And she will open her mouth and even sometimes put the spoon inside her mouth without closing her lips. Then she puts the spoon back down into the bowl. Then she will say :"Vicki good girl" over and over again.. She will just sit there sometimes and stare off into space. She will yell. She will make noises. She will cry. She will pick up her spoon repeatedly and put it back down. She will go through this scenario over and over again. I know I am not describing it right. Because if you would see her struggle, if you would see her eyes, you would cry. It took close to 2 and a half hours that morning for her to begin to eat her cereal. When she finally ate it, she finished her cereal in 5 minutes. Then she stood up and said, :"Vicki bathing suit. Vicki beach. Vicki water." And it was over. Just like that.  So we went to the beach, I got the amazing moment on camera of Vicki's eyes dancing and her smile so wide you would never have guessed in a million years what I just witnessed for 2 and a half hours. That is why I choose that picture and that moment over the 2 and a half hours of eating breakfast. Because I have to. Because I need to. Because it is too painful to dwell on that time. Thanks for listening. xoxo

Day 12. Year 4.

Sigh. Another week of not posting. :(  We spent spring break at the beach... and although I took my computer with me and had the best intentions of writing every night... I had some technological difficulties...I forgot to pack my laptop's plug in keyboard, my laptop keyboard doesn't work. Apparently, it is not a good idea to spill coffee on it... I learned that a few months ago. So, the last post I did, I did it with the virtual keyboard where you have to click type each letter with the mouse. It took me way too long to post just those 2 paragraphs...and our internet connection was so bad that I would lose connection before I finished a sentence. So, here I am. We are finally home and I now have a fully functional keyboard and internet connection. :)  I decided...that with as much daily posts as I have missed, I am going to extend to get 30 days in. I will be ending my 30 days with Vicki's 12th birthday on May 12th (with a few 2x a day as well). I like to write for the 30 days in April since it's designated as autism awareness month, but since I am aware of the autism that we are aware of 24/7 365 days a year... a few days in May shouldn't be much different.

The last post I wrote talked about the little moments. I think I talk about the little moments so much because I have to. Because it helps me to. Because if I don't live for those little moments, then sometimes it's so hard because some of those big bad moments suck. A lot.

Warning: major shift in thought processes. ;)  I want to talk about pictures tonight.
Pictures are a very integral part of my life. I am thankful for digital cameras everyday. ;)  I think I took about 1,000 pictures this past week at the beach. And sadly, that's probably a pretty close estimation. Sheesh. I love capturing memories. Vicki loves looking at pictures. We laminate so many pictures for her visual schedule. We make little photo books all the time. We put scrapbooks together of her Layse Black Cat, of all of her birthday cakes, dance recitals, Halloween costumes, and lots and lots of pictures of Vicki cooking.

I am one of those crazy facebook picture posters... Not like a poster that you tape up on your wall with that blue poster sticky stuff... But a poster. I like to post pictures. But I am very selective of the pictures I post. I don't post pictures of other people... unless I have their permission. I tend to only post pictures of my kiddos. Wow. Go back and reread this. Peter Piper Picked a Peck of Pickled Peppers. ;) HA! Anyway.... for that one picture that I post of my kids... there are 100 other pictures of the same thing that didn't make the cut. I'm not really sure why I am babbling about this. I actually am sure, but can't seem to figure out how to say it. It's like celebrating the little moments. If you look at that one picture that I post of Vicki....you may see an engaged, smiling little girl... looking directly into the camera, sitting so nicely in that canoe or see the one picture on the beach that I will post that just takes my breath away..... it gives me chills... it's absolutely the right moment and it shows all of Vicki's amazing-ness. I want to blow up that picture and hang it on my wall. I have to see those pictures and feel those moments. They are developed in my heart.

I allow those moments to be out there. It's the other 100 pictures, the other 100 moments that I keep bottled up inside that I would never show another person. I see that picture and I delete it right away. And I guess that's not fair. Because I am only showing you one side of the coin.

If you see what I want you to see and read what I want you to read, then that's what you get and what you may perceive as the autism that I show you. You may think, 'I don't know what she is complaining about... look at her daughter, sitting there in the canoe and smiling on the beach. I don't see autism'.  And maybe that's because I don't want you to see it. To really see it. I don't want you to see the 3 hours before that picture on the beach was taken. I don't want you to see the entire rest of the day of our canoe trip.
It's funny... I was actually going to write about some of the challenges that we had this week.... and I will... but again, tonight... I chose to keep that little moment, that one picture, my beautiful Vicki the center of this post. Until tomorrow morning friends. Thanks for sticking with me.... xoxo

Day 11. Year 4.

I've really been struggling with writing  lately. Besides an extremely hectic schedule the last few weeks, I feel like everything I think  to write about is just going to come off as whiny or complaining.  Right now with Vicki there aren't any extreme crisis situations in her health, and for that I am grateful, very grateful. We went back to her neurologist about a week ago, And she rocked that appointment. It's the best she's ever been throughout the exam. She followed each direction...and she was happy, so happy. As we were walking like a duck on our heels and quacking then tiptoeing quietly down the hallway like a mouse... it was hard for anyone walking down that hallway not to smile. :)

Vicki's delight in the simple things is the absolute best thing in the world to witness. She takes the time too smell the roses... and the lemons and the vanilla and the cinnamon. The little smile that plays and tugs at the corner of her mouth.... and the way her eyes sparkle and dance..."Vicki watching" is the most rewarding activity ever. I feel like I'm given the greatest gift in the world every time I take a  moment and just observe her.I get a glimpse at a pure feeling... one completely raw and natural. A moment of Vicki enjoying Vicki and delighting in the world around her, not for anyone or anything. There is something so cool about experiencing a moment... not performing for anyone or anything. Just enjoying the moment and taking that moment. Like last night... we are spending the week at the beach... and we took a quick walk along the beach when we got here. She took her sandals off,  picked up the edge of her skirt, threw her head back, and spun around. She giggled.. Her pony tails blew around in the wind. Her face was so open, tilted up to the sky.  Then she smiled and said " ice cream cold"... her  way of telling us she was cold and wanted her jacket. I love her phrases. Ice cream cold. Smile... you know you want to. :)  And maybe the next time you are cold...you will smile and think of Vicki... and enjoy the feeling, the moment. Roses smell so good. xoxo

Day 10. Year 4.

Gosh. Where do I start tonight? I think I will just start with today. That works for me. And today I want to talk about patience. Patience is not something that I have an abundant supply of. I would really like to have a never-ending supply of it, but deep down I get so impatient sometimes. And today tested my patience a little bit. And some of the things are so trivial. So silly to be impatient about. Like... I picked today to get our oil changed in our van. It seems that everyone else in the tri-state area also decided to get their oil changed as well. You would think it was a holiday weekend or something. ;)  Anyway, I bounced around this am looking for that place that would get me in and out in under an hour. I think I wasted more time looking for one than just decided to go with one. Finally I decided to try to multi-task. I thought... might as well go to Wal-Mart and wait for 3 hours... I have some shopping I had to do anyway, and I really wanted to get a pedicure before we head out for Spring Break. So I stopped at the library to get a book to read so I wouldn't be too impatient while I was waiting. When I went to get my pedicure, the guy told me to sit down in the chair and he got the water ready to soak my feet. An hour and 20 minutes later, with my feet all pruney and cold, I was having a hard time concentrating on my book and kept looking at the time on my phone. I was trying hard not to send dirty looks to the employee... but oh my goodness, my butt was falling asleep from sitting so long and he hadn't even started my pedicure yet. ;) Yes, I told you. Silly problems. Anyway... it all worked out. I went into Wal-Mart at 10:45 and left around 2:15. In the span of 3.5 hours I got the oil changed in our van and a pretty pink pedicure, and I got everything I needed to buy. So, really, it wasn't 3.5 hours wasted. I'm not sure why I am babbling about all of this. I'm sure it's trying your patience and wasting your time right now. But, I guess what I am trying to say is that it's hard to wait. It's hard to be patient. A skill I haven't mastered yet. I try to stay polite and not be ugly to people. Everybody's time is important.

Tonight my husband and I had to go to a meeting with the new providers we have for Vicki's ABA services. I really dread meetings. It doesn't matter what kind they are. They try my patience and sometimes I feel like they waste my time. My precious time. After years and years of meetings and going over goals and progress and behaviors and etc... etc... I have to admit, sometimes it gets old. Even though we may be meeting with new people. The general vibe of the meeting is very old. I get so tired on talking. I get tired of talking about goals and problems and behaviors and blah, blah, blah. I get tired of filling out those forms that say, 'sometimes, always, never, maybe, could be, possibly, not applicable, blah, blah, blah. (I feel like the main character from Hotel Transylvania... blah, blah, blah... I hope someone got that reference!) Anyway... I do understand the importance of good communication and everybody being on the same page and the importance of working towards goals and setting plans in place. I understand all of it. I really do. I just get so impatient sometimes. I just want to say, 'ok. got it. now how can you help us with.....' or, Can you show much how to implement this? Like really how to implement it. I understand what it looks like on paper. i understand that your goal is to .... 80 percent of the time... blah, blah, blah. But HOW? How to we gt from point A to point B when you have intersect xyz, and Joey and Ally and dinner, and this time constraint, and this safety concern.... I don't want to start out with compliance for something Vicki is just about ready to do anyway. I do understand that's how it works though. I am just impatient. I want you to tell me right now how I can get Vicki to eat her yogurt in under an hour. I want you to tell me right now how Vicki can finish her dinner in under and hour and a half. I want you to tell me how to get Vicki from yelling the same movie title over and over again for upwards of an hour. I have lots of great goals on paper. And I know you have to start small. And you have to collect data. But, it's so hard to ease into something. I don't like to do that. When I get into a pool, I don't like wading in and getting a little piece of my body wet at a time. It takes to long to get used to the water that way for me. I just like to dive right in, get it all done in a second. And then it's done and you acclimate. Anyway... thanks for listening. I am trying to work on patience. It's definitely a virtue I could use a little help with. I did come away with new oil for our van, new polish for my toes, new foods to cook and clothes to wear for our trip, and new papers to file with shiny new goals and plans to follow today. You have to start with a fresh coat of paint every once in a while. I just want to hang a wet paint sign up. I wonder how long til it dries and we can use it? xoxo

Day 9. Year 4.

Well, I am officially irritated with myself. Bleh. Since I started this blog a few years ago, I've never once been more than a day behind. My apologies to you. I really appreciate you taking the time to read my blog, and am sorry that I haven't done any new posts in quite a while. I will be playing 'catch up' this week and trying to put out one in the morning and one in the evening...
I guess a good thing about me being behind is that even though I feel like autism dictates my life most of the time, we've packed a lot of stuff in this past week. Made a lot of memories. Had a lot of fun. Worked hard, played hard, and told autism... 'Ok, I get it. You are always around, but we will continue with our lives and work around you..' So even though I still ate, breathed, and slept autism, autism hasn't been my number one priority this week. But don't get me wrong... I could dissect every minute of the past week and come up with lots of things that autism did to try to throw a wrench into our lives and our memories. (And I might... I do have quite a few days to write...) Oh, also...  I realize that I am no where near as young as I think I am and that sleep is a very precious commodity that I can not do without. :)
Talking about playing "catch up" today makes me think of "ketchup"  because of the way Vicki pronounces it. So I think I will talk about ketchup for a minute. Ketchup reminds me a lot of Vicki. Ketchup is red. Vicki's favorite color is red. Ketchup adds flavor to food. Vicki adds flavor to life. Sometimes you don't even know what you are missing until you dip something in ketchup. And ketchup makes it that much better. Heinz ketchup is made in Pittsburgh. I am a Pittsburgh girl at heart; Pittsburgh will always be my home. I am a Vicki girl at heart; Vicki will always be my home. I always need to have ketchup in my fridge. I will always need Vicki in my life. She adds spice and flavor to every aspect of my life.
I'm glad to be back writing again. Sorry this one was so corny and short. Just like me. ;) xoxo

Day 8. Year 4.

I promise that by the beginning of next week, I will be on top of posting every night again! Things have been rather crazy this week. It's been stressful lately and with all of the tragic stories in the news right now... I am in the mood for a feel good post. I want to write happy thoughts. What better way to celebrate happy thoughts than by talking about Vicki and her passion for cooking? I know I touched on the Cook with Me. Love, Vicki project that I started for her last May. Gosh, it's been almost a year ago already! But for those of you who don't know much about it or haven't followed her successes on the Facebook page, let me tell you a few things that Cook with Me. Love, Vicki has done for Vicki. Some things are things that I had hoped for when I started the project. Other things are just big ol' bonuses that I never would have thought of that make me so happy--- Like goose bump happy--- when I talk about them. :)

One of the things I had hoped for was that by opening a P.O. Box for Vicki's mail... was of course that Vicki would be going out into the community more, that she would be a more active participant in her community.. And, with the exception of a few bumps along the way, that's exactly what is happening. (One of the bumps... silly birds flying too close to the trees in the parking lot of the post office... kind of scared Vicki one day as she was getting out of the van, and she had a period where she wouldn't get out of the van because of those darn birds.) Some of the other little things that have happened with her trips to the post office: She has become a pro at opening a lock with a key. It took a little while to master that skill, but she has it down pat now. She continues to work on identifying and locating numbers... sometimes when Vicki gets a package (or treasure box as I call it), she finds a key with another box number on it... which she then has to locate and open that box. It's like a treasure hunt! Incidentally, this has been interesting with her OCD issues... when she gets a key inside of her p.o. box, the key turns differently than her regular one and with these keys, you have to leave the key in the key hole after you are done using it. That was hard for her to do at first. It's a more challenging lock to open, and it doesn't feel natural to her (or me!) to leave the key in the lock. But she does now without too much difficulty. Another thing going to the post office has done is taught her to be more patient and venture in a little farther to the post office. When she gets packages that are too big for the box size, she gets a little yellow slip of paper. The first time that happened, I had checked the p.o. box before hand and noticed it and went in myself and got the treasure box. I brought it home for her to open at the table. The next time she got a yellow slip of paper, she stood with her aide just outside the main glass door entrance and watched me go through the line and waved at me. She waited patiently there until I brought her treasure box out to her. The last time she got a yellow slip of paper, she walked right through the glass doors and stood with me while the postal worker got her treasure box. She even handed her the slip of paper and said thank you after she was done. ;)

Another thing is has forced her to work on is putting on her coat, or leaving her coat off, depending on the weather when she is getting out of the van. We are still working on this one. And finally, having a p. o. box has taught her a little about how to open a letter. She got her first paper cut while opening a note the other day and she said, 'ouch. boo boo.' She has been reading the notes and the recipes that are sent to her. She can't read all of the words, but every once in a while she can read an ENTIRE note that someone wrote! Without prompting!!!! Those are the happy goosebumps! AND, she is generalizing her reading skills because she is reading all different kids of fonts and styles of letters. Printed, handwritten, block....  The one thing I haven't done yet is have her go into the post office and come out without a letter. I know that's a skill she will have to learn. You may not get mail everyday... but it's something I haven't wanted to attempt yet.

I bet 'ch you didn't realize just how many life skills she has learned with just the act of going to the post office!! I didn't realize it either! Just wait until you hear about all of the other things that this project is helping Vicki with! Hopefully this post puts a little smile on your face, because going to the post office and receiving your letters and recipes... well, it definitely puts a smile on Vicki's face. Vicki's 12th birthday is coming up on May 12... her 'golden' birthday. Do you think you all could help me make it a little extra special for her? If you get a chance, could you drop Vicki a note and a special recipe for her birthday? I know it would make her day!

I can seriously find a zillion songs to match my posts everyday. ;)  An oldie but a goodie and a new one that you just can't not clap along to. ;)

Oh yes, wait a minute Mister Postman
W-a-a-a-i-i-t-t- Mister Postman
Please Mister Postman, look and see
If there's a letter in your bag for me
I've been standin' here waitin' Mister Postman
So...oh...oh... patiently.....

AND... to start off your Friday humming and smiling....

Clap along if you feel like happiness is the truth
Because I’m happy
Clap along if you know what happiness is to you
Because I’m happy
Clap along if you feel like that’s what you wanna do

Receiving your letters and recipes makes Vicki so happy. Thank  you for making this project all I ever dreamed about for Vicki and so much more. xoxo

Day 7. Year 4.

And, here's the continuation of my list, the last 5. For this 5, I decided to do 5 medically related topics...just because.

6. Vicki dislocated her elbow when she was 18 months old. We took her to the ER and the ER doctor couldn't reduce it. They sent us home with her elbow hanging ickily (my new word) by her side. She laid on the couch and never cried. It took 24 hours for her elbow to spontaneously reduce. She is one tough cookie.

7.  Vicki has been to lots of doctors in her lifetime. She started out with the NICU team when she was born, She's been seen by neonatologists, pediatric cardiologists, her regular old pediatrician, multiple developmental pediatricians, audiologists, neurologists, psychologists, endocrinologists, geneticists, neurosurgeons, otolaryngolist, ophthalmologist, optometrist, allergist, and a few others that I am sure I am missing. No wonder she doesn't like to go to the doctor. :(

8. Vicki has had lots of different therapies over the years... from more traditional speech and occupational therapy, to therapeutic horseback riding and listening therapy (using the Tomatis Method for retraining the ear), She's had ABA therapy since she was 4 years old. We've dabbled in vision therapy and pharmacological interventions (that have included chelation and B12 injections that we had to give her every 3 days for a few years among other things), as well as allergy shots. Some interventions have made a tremendous difference, others not so much. Sometimes it is difficult to ascertain whether a new medicine or treatment protocol is working or whether a zillion other factors could be the culprit or savior. I think one of the most difficult thing as a parent is feeling like you are never doing enough or doing the right things. Unfortunately, most of the above mentioned interventions have not been covered by our insurance and we've had to pay 100 % out of pocket. That's so commonplace and so sad. For example, right now it is being recommended to do IVIG treatment for Vicki's  PANDAS. It stinks that we have yet to get our insurance to cover this. Sigh.

9. Vicki has an official diagnosis of Autism ,Seizure Disorder and PANDAs. Unofficially she has a diagnosis of an infectious laugh and a twinkle in her eyes and a spring in her step. ;)

10.  Vicki has been in the hospital a few times.. Of course, when she was born she was in the NICU for 7 days and received 2 complete blood transfusions. She had tubes put in her ears when she was 5. She was admitted to the hospital in 2010 for a few days - that's when she was diagnosed with seizures. She has had (I think)  2 sedated MRI's and was in the hospital 2 other times for 24 hour EEG's. She will be returning at some point tin the next few months for another sedated MRI. She has a small mass next to her pituitary and they just want to keep an eye on it to make sure it doesn't get bigger. One of the most amazing things I have taken from her hospital stays is the phenomenal staff that has worked with us, especially the hospital therapeutic play staff. In 2010 when she was admitted for seizures...  Joey and Ally were pretty scared. I remember the therapeutic play specialists bringing big buckets with the kids names on them with dolls and all kinds of hospital supplies... masks, bandages, gloves, those little green mouth swabs. You name it, it was in there. They answered questions patiently from the kids and they brought Vicki all kinds of cool stuff to play with in her room. They gave Vicki a new bottle of red nail polish, lots of play-doh, and so many more things. I wonder if these wonderful people know what a difference they made to our whole family that hospital stay.

Anyway.... that concludes my random list.  You see the good and the bad and the happy and the sad. I bet if I asked Vicki to list things... she would list her favorite Disney princesses and foods- especially fruits and veggies. Maybe I'll have her do that today as we wait to see the neurologist later this afternoon. xoxo

Day 6. Year 4.

The other day I made a comment about articles that give you lists about what children with autism want you to know. And lists of things that describe autism. Today I was listening to the radio and heard that David Letterman has decided that it is time for him to retire when his contract is up. So, in honor of his Top 10 lists... Here goes mine for the night. 

10 things you may or may not know about Vicki, in no particular order:

1. Vicki loves dressing up for Halloween. Over the years, she's been a tiny ballerina dancer, Tinkerbell (to Joey's Peter Pan), Snow White, A Kitty Cat, Dorothy from the Wizard of Oz (Ally was her Toto), Little Red Riding Hood, Jasmine, Strawberry Shortcake, A Lovely Witch, Annie, Ariel, and Belle. With as much difficulty as she has in going to people's houses... she LOVEs trick or treating. The holiday of Halloween knows how to do reinforcement right. What better to reinforce socialization than by getting a piece of candy for engaging in conversation and eye contact? I love how engaged Vicki is and how polite she is. Once she is prompted at the first house, she will always say thank you. :) 

2. Vicki has been to 28 states (I think): Virginia, Pennsylvania, Maryland, New York, New Jersey, Connecticut, Rhode Island, North Carolina, South Carolina, Georgia, Florida, Ohio, Illinois, Missouri, Kansas, Colorado, Wyoming, South Dakota, Nebraska, Kentucky, Tennessee, Arkansas, Oklahoma, Texas, New Mexico, Arizona, Utah, and California.

 

3. Vicki has never been on an airplane. But she has been on a train, a subway, a boat, a canoe, a kayak, and  has taken a cab ride.  

3. Vicki has ridden a horse, a donkey, and an elephant. And once had a zebra's head in her lap. 

4. Vicki loves amusement parks, absolutely loves them. Let her ride a roller coaster with Daddy and her face lights up. I love her giggles and her squeals and how happy she looks when she is coming off the roller coaster holding Daddy's hand and skipping. Our favorite amusement park is Busch Gardens. She's also been to Disney: Magic Kingdom, Epcot, Hollywood Studios, and Animal Kingdom. She's seen Universal Studios and the Lego Land in CA, as well as Sesame Place and Idlewild Park in PA.  Oh, and King's Dominion.

5. Vicki loves, loves, loves the beach. She could stand in the waves with Daddy for hours, and has. She loves the sand, not necessarily building sand castles, but she loves feeling the sand on her body. She'll lay on her tummy right where the sand meets the water and just run her fingers through it and let the waves lap around her feet. She loves the wind whipping her curly hair around and enjoys picking up seashells and rocks and throwing them into the water. 

OK. I am going to stop here fore this post with 5. I purposefully put all fun things on this one. We never want to let autism dictate what we can and cannot do with our family. There are certainly things we can't do and don't even want to try. But there are so many things we can do. They may not always be easy. For each of these, I could easily write pages upon pages of modifications we have to make or difficulties we have had when doing these things. But today, I just wanted to say...  I am so thankful that Vicki has been able to experience all of these wonderful things. With all the preparation and planning and bumps and stumbles along the way, at the end of the day if we were able to make Vicki smile and hear her laugh and see the sparkle in her eyes... Well, then, it was all worth it. xoxo

Day 5. Year 4.

I am 2 days behind. Yikes. I need to get back into a groove time to write. I think I've written too much on my daily Lent posts that I feel like I am overwhelming everyone with lots of me thoughts.;)

So you know how I was telling you a little about Vicki's difficult day on Friday? Well, Saturday morning as I was getting her up, she was sobbing yet again. :( I wish I could just let it go. And not try to figure out why she is crying... I know that I will probably never know. And that's too hard for me to accept some days. Sometimes there is no answer. We just cry. Who knows what triggers it. Vicki's going to be 12 in a few weeks, that's a hard time in any young girl's life.

I have a horrible character flaw... I am a people pleaser. I always want to make people happy. I don't ever want to pick a fight, I don't ever want to make things difficult. I just want to make people happy and make people smile. Same goes with how I feel with my kiddos, which does not bode well for me winning any parenting awards. I understand that sometimes we have to just let things be. We have to accept that we are not always going to be happy. There will be disappointment. There will be sadness. There will be arguments. And that's ok. I understand that sometimes we have to make decisions that don't make everybody happy. BUT... sometimes with Vicki, sometimes that is so hard. I never really know why she is crying. Is it medical? Is it hormonal? Is it because she is sad? Because she misses someone? Or, just because?

One of the things that makes me sad is wondering what Vicki is thinking sometimes... seeing a look in her eyes that I just can't explain. She understands way more than I give her credit for. Does she have an idea of what the word autism means? Does she want to tell me something? I see all of those articles and lists that are posted... Top 10 things people with autism wish you knew. What autism is, what autism is not. And I think... how do you know? How does anyone know? The only person who completely understands the depth of what autism is to Vicki, is Vicki. I wish with all my heart sometimes that Vicki doesn't know. I try to find the silver lining in autism so often, I think... thank goodness that Vicki is immune to all of the social nuances and standards that bog down a person. It doesn't matter to Vicki who is sitting next to whom at the lunch table. It doesn't matter to Vicki that she wasn't picked first for a game in gym class. BUT, how the heck do I know that? I don't. Maybe things that I think she is unaware of, she is very aware of but can't tell me. Maybe she picks up cues here and there and then lays down at night to try to process it all and doesn't understand.

So, so often when Vicki is crying... I would give anything to comfort her and make her sadness and pain go away. What matters to Vicki? What REALLY matters to Vicki? I think I have ideas sometimes, but I'm not sure. And when Vicki is having a really difficult day, and she can't stop crying. And her OCD is taking control of her in ways that I can't even fathom... I just want to give in and give anything to her. Because so often it seems that my love and my comfort isn't enough. It makes me want to say, 'OK Vicki... you can watch "cartoon 4" which is a DVD that she has been obsession over for the past month or so... It's become such an obsession that some days she can't stop asking for it. She will say "Vicki cartoon 4. cartoon 4. cartoon 4. cartoon 4. cartoon 4. Vicki cartoon 4......" for hours. And here I am trying to be a people pleaser again. All I want to do is give her cartoon 4. Why not? She's sad. She's crying. She likes cartoon 4. It makes her happy. She asked for it. But you can't always get your child that piece of candy in the check out line. Sometimes you may want to, just to make them happy. Or more so, sometimes, just to make them quiet. Because after hours and hours of "Vicki cartoon 4..." I have to admit, it gets annoying. It can grate on your very last nerve. Eventually the requests lessen, at least for that moment. And I feel like, woo hoo... I won. BUT, it never feels like a win to me.

Anyway, I'm not sure I had a point at all to my writing this morning. But thanks for listening. I will leave you with another obsession in our household over the past few months. It takes on new meaning when I think about Vicki and autism. xoxo

The snow glows white on the mountain tonight
Not a footprint to be seen
A kingdom of isolation,
And it looks like I’m the queen.

Don’t let them in, don’t let them see
Be the good girl you always have to be
Conceal, don’t feel, don’t let them know
Well, now they know...

Day 4. Year 4.

PANDAS, PANDAS, GO AWAY. Please don't come back, we don't want you to stay.

If you don't mind, I'm just going to wallow in a bit of sadness tonight. Today was not the easiest of days. And I am speaking from my perspective only. I can't even image how these kinds of days make Vicki feel. :(
Argggg. I just get so frustrated. Autism. Seizures. PANDAS. Please will these 3 amigos just give Vicki a break? All I want is for Vicki to ride off into the sunset happy and content. But she can't do that some days... and she hasn't been on a horse for 2 years. That makes me sad too, because she loved therapeutic horseback riding so much.  Sorry, I'm very distracted tonight.

I don't even know anymore (and I guess never really did know) what causes what and why. There are so many neurological things going on right now with Vicki that I liken it to pulling out a bunch of tangled necklace from a drawer. They are just all clumped together. And no matter how much you try to untangle them, sometimes it's next to impossible. Some days it gets so frustrating, and there is no end in sight so you just leave it all bunched up together and tell yourself you will try again tomorrow when you are not so frustrated and exhausted. You have to. You get up the next day and work at it again. And then you get those necklaces apart and you feel such accomplishment, such satisfaction. You say to yourself that you will do everything in your power to keep them from getting tangled up again. But they do. And then you are right back where you started at the last time.

All of these neurological amigos are wreaking havoc on Vicki's necklaces right now. It's so hard to tell where one begins and the other ends. A behavior is a behavior is a behavior. I've never been good at analyzing behavior or implementing behavior plans. And I certainly can't tell the function of some of Vicki's behaviors anymore.

One thing I do know though... what I see just breaks my heart. She cries. I cry with her. She holds on so tight to me... she looks deep into my eyes like she is trying to show me what's going on so I can help her separate the necklaces. I don't really want to talk about super specific instances tonight... and it may not even be one big thing that sticks out, but it's little by little by little and I feel like she is getting all tangled up again and I can't do a damn thing to help her sort it out. I hate feeling so helpless. She's in there. She's not. She's happy and carefree and giggling one minute on the swing as she throws her head back and the wind whips her curly hair around her laughing face. The next minute she is sobbing, crying so hard, squeezing my hand so hard and pulling me close to her. Then she wants dinner but she can't make herself eat. Something is stopping her. And then it's 45 minutes later and she hasn't been able to take a bite yet. And then she can't stop talking about a certain movie or the old scar on her hand. Over and over again. Over and over. If I had to guess, maybe 10 to 15 requests per minute, going on for a half an hour, then an hour... And then she's crying. And then she's laughing, and then she's staring off into space and I feel like she may be having absence seizures again.

Damn these 3 amigos--- autism, seizures and pandas--- you are no friends of mine or Vicki's. You are not welcome here. Sigh.

Thanks for listening tonight. xoxo

Day 3. Year 4.

You will have to forgive me tonight... I am doing a little Throwback Thursday stroll down memory lane. I was looking for a document in the deep space of my computer tonight.... and of course I never found the document I was looking for. But I found so much more. I've spent the last hour reading over notes I wrote years ago, looking at pictures from when the kids were little, and just taking a little time to think about time. And what it means. I wanted to share with you an excerpt from one of my first 'Autism Notes' that I wrote... I used to email them to close family and friends years ago. It was like my year in review for Vicki. 

                                                 

"........ Vicki has worked really hard this year. She went from being essentially non-verbal to having such phrases as "I want ----" She has picked up a lot of labels - food items are very motivating to her - so she will say "I want chicken, I want chocolate, I want cake, I want watermelon." She is beginning to use phrases to tell us where she wants to go, which is usually "I want outside, I want go, Open please." Having some labels in her repertoire has really helped her be able to communicate some of her basic wants and needs. Her frustration level is high though- although she has a few phrases; it is still not enough for her. I can't imagine not being able to communicate. She screams and cries a lot. It's very hard to figure out why sometimes. I'm sure all of you who are parents remember the relief you felt when your little ones could tell you that their belly hurt, or their ear hurt, or they were sad because someone hurt their feelings. As a parent, it’s quite a milestone to have your child be able to tell you what or why. Vicki still is not able to do that, so as I hold her, with tears streaming down her face, all I can do is comfort her and try to keep from crying myself......
She has a strong sense of self, and is very strong willed - she wants what she wants when she wants it!! She will be 5 years old next month....." And at the end of my note, I quoted a saying (I'm not sure where it's from now though). 

"When you dream alone it is only a dream, but when you dream together it is the beginning of reality." 

...."It's so important to have a dream for Vicki, and for Vicki to eventually have a dream for herself. We don't want to just settle, we want her to have a chance to achieve her dreams."

I wrote that over 7 years ago. A lot has changed since then, and a lot has remained the same. 

It's bittersweet in a way. I have so much more to say about this, about where she has been, and where she is going, and about our hopes and dreams for Vicki, but I can barely keep my eyes open right now. I guess I shouldn't have spent so much time going through pictures and notes... But, then again, maybe that's exactly what I needed to be doing. I read a little post today that circulates on Facebook every once in a while  ... a feel good story about how we make our own happiness.

" Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away--jut for this time in my life.  You see, old age is like a bank account.  You withdraw from what you've put in.  So, my advice always...welcome each day as a God given gift.  You have more and more to look forward to, and you'll deposit a lot of happiness in the bank account of memories."

I think that's a very cool way to look at life. I was just perusing my bank account tonight and realized just how rich I really am. xoxo  

Day 2. Year 4.

April 2nd. Today's date. How many times a day do I write the date down?  I write out a check. I sign forms and fill out paperwork. I write notes.  How many times a day do I ask myself, what day is it? Quite a bit, more so every day I get older. ;) Dates hold special meaning for each of us. They mark happy occasions such as birthdays and wedding anniversaries and big moments in our lives. First words. First steps. First day of school. First kiss. First love.  They also mark sad occasions, the anniversary of a loved one's death, the anniversary of a world tragedy, They mark days that are filled with hope, I wonder if that's why so many people use birthdays and special days when they play the lottery? They mark reflective days, such as this date today. World Autism Day. Of course I spent the day reflecting on how my life changed the day we got Vicki's autism diagnosis. I never thought as I was so diligently filling out my children's baby books that I would have to write down "Diagnosed with Autism" under a specific date. To this day I get chills, and not the good kind, when I think back to those first days of coping with the enormity of that 7 letter word.   But that's not what this post is about. This post is about Vicki. And how she sees dates. I'm not sure how much I touched on this in years past... but this past year it has been crazy to watch her obsession with the calendar and dates unfold. Truly remarkable. And when I think about how Vicki comprehends dates, I get chills, and not the bad kind. :) The kind of chills that make me realize that Vicki is giving me a glimpse inside of her amazing mind. A glimpse of the unbelievable. Of the astonishment that I can't even grasp. The fact that I have no idea how far reaching her mind is. And when she shows me something... holy moly. The goosebumps never leave. Vicki loves calendars. I mean really LOVES calendars. We have one of the those big ones with velcro on the numbers hanging up on our wall. Every morning Vicki does her calendar. She goes to school and does calendar there. She loves all of the firsts of calendars... I think her 12 favorite days of the year are Jan 1. Feb 1. March 1...... She loves the day we change seasons. She loves talking about the calendar. She loves looking at calendars on my phone. She loves her pocket princess calendar. She loves our hanging 30 day color coded calendar. Now here's where the amazing and phenomenal comes in. Her memory of dates. It blows my mind. Let me give you a few examples. She's been talking about the scar she has on her hand. And when she started talking about it, she said, 'Sunday October 30, 2011.' How can she remember that date exactly? And let me tell you how she describes that day, and these are Vicki's words. 'Pink cut. All better. Pumpkin.. Cut. Boo. Boo.Gray knife. Blood. Red. Vicki wrapped it. White paper towel. Ouch. Doctor. Come on Barbie lets go party.  Then Halloween. Blue. Wrapped it. Vicki Annie.' And she goes on and on. And she is 100 percent correct. She cut her hand the day before Halloween, 2011. With a gray knife. We wrapped her hand up with a white paper towel. At the doctor's I played the Barbie video song that she loved so much at that time. The next day she dressed up like Annie for Halloween. (I even did a post about all of this, if you ever care to go back and read it.) Another example. Vicki had a really hard time last weekend. She wanted "Trip. PA. Grandma. Grandma/Pappy." But we couldn't go home last weekend. Why was she so adamant about going home March 30? Because when I looked it up... we did go home to PA to visit family March 30, 2013. That was Easter weekend last year. And then... another example. I made a scrapbook for Vicki with pictures of Vicki and her cooking masterpieces that she has been doing with the Cook with Me. Love, Vicki  endeavor. One day as she was flipping through the pictures (and mind you, I didn't write down dates in the scrapbook) she stopped at a picture of her stirring homemade apple butter in a crock pot. Vicki looked at the picture, smiled, and said, "Vicki. Apples. Sunday October ... " and I can't even remember what date she said now, but she was spot on. She can do that with so many days. It's unbelievable. She remembers EVERYTHING!  It has been an amazing process to watch Vicki and listen to Vicki as she begins to tell me what she has in that mind of hers. I soak it all in. And am thankful for every word. Every date. Every memory. (I'm not going to go into the down side of this tonight... that will be for a post on a night when I am sad. That's not tonight.). And just so you know... Vicki didn't wake up this morning and say "Wednesday April 2 World Autism Day." She woke up and said, "Wednesday April 2. Mom. Take a shower. Car. Joey. School. Home. Medicine. Old medicine. Calendar. Car. School. Home. .(Aide's name). Old medicine.  Car. Dance Class. Home. Homework. Reading. Exercise. Dinner. Brush Teeth. Potty. Pinterest. Movie. Medicine. Old Medicine. Clean up. Bed" because that's what's on her visual schedule. And now... I can almost guarantee you that next year on April 2... Vicki will say, 'Peanut Butter Pancakes. Jelly Syrup. Bacon. And Milk." Because today we celebrated National Peanut Butter and Jelly Day. And she won't forget that.From this day forth, April 2 is now officially peanut butter and jelly day. And because I have a song for every occasion, I will leave you with this oldie.
I love, I love, I love my calender girl
Yeah, sweet calender girl
I love, I love, I love my calender girl
Yeah, sweet calender girl
Each and every day of the year. 
xoxo