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