Day 10. Year 2.

     Vicki was very excited this morning to see her visual schedule. After telling me last night what she wanted on it, she wanted to check and see if I listened. :) And, I did. I have to say, sometimes I feel like I am  copping-out of dealing with Vicki's behaviors, though. In case you didn't catch the incessant amount of whining I've been doing about how things have been difficult... I really wasn't up for any major happenings this morning. I just wanted to get our stuff packed up and everyone ready to head back home after spending Easter with our families. Did any of you ever have an obscure board game called 'Rock the Boat' when you were little? I was just thinking about that game as I was thinking about Vicki's behaviors. And I just googled it. Oh my goodness, what a great flashback to childhood... I loved that game! Anyway... I'm kind of random tonight.

     So, in an effort not to 'rock the boat' today, I feel like I was tiptoeing around Vicki. Not pressing too much, but coaxing a bit. I always think about the phrase, 'pick your battles'. And I do. With all of my kids. Don't we all sometimes tell the kids to do something, and then 20 minutes later regret it? But, gosh, if we back down, our parental domination is threatened. So, I picked my battles carefully this morning. I always feel like I am holding my breath with Vicki too... After I ask her to do something, and I give her some time to absorb what I asked and decide how she is going to respond... there are always those few seconds, where Vicki looks like she is hesitating, then starts forward, then backs up. And it's so hard for me  to keep an even tone, to not get excited or worked up. It's tough for me. Sometimes I can feel the panic welling up inside of me and I get so nervous. Still. You'd think I'd be calm and collected when anything goes on, like I should be a pro at it, but sometimes it feels like the first time all over again. Anyway, she's been struggling with getting into and out of the shower the last few days, so when it was time on her schedule, I was a little jittery. She hadn't been screaming or refusing this morning, so I was cautiously optimistic. And when I told her 'first shower, then car' she looked like she was thinking it over... And then she said, 'Mommy take a shower'. Usually I shower after her because I feel like I get a shower anyway when I give her one. But sometimes, if things are really on a tight schedule, or if she is particularly struggling, she'll ask, 'mommy take a shower' and she wants me to shower with her. I know that sounds kind of icky, but she learns so much by imitation, sometimes it is the best form of acquisition for her, so by modeling how to wash in the shower it becomes a fun activity for her and an easy way to, pardon the cliche, kill 2 birds with one stone. So I did. And she's always singing in the shower when I am with her. It's really kinda cute. :) After she was showered and dressed I feel like I let out a big sigh, like I had been holding my breath. One hurdle cleared. Onto the next...

     It was all good until we were ready to pull out of the driveway with our children packed into an over packed van. I sure hope they didn't needed to get out of the van until we unpacked things from around them. I sure hope they all peed when I told them too... Anyway, what's one of the worst sounds you can hear when you go to start a car? Yep. Nothing. Click, click, click, click. Are you kidding me? The other day when I wrote about 'recharging my battery', I meant it figuratively! NOT literally! Thankfully, family to the rescue. And we were on the road again within the hour. Phew. Thank goodness that's all it was.

     Then, of course, tonight, we came home and slowly unpacked our kids from the van. And of course, I didn't want to cook as soon as we walked in the door. And of course, Vicki had wanted McDonald's if you recall. So we went out for Mexican. Kids eat free Tuesdays. Woo hoo! But, of course, as the waitress is delivering our meals, she says, 'And the kids enchilada meal will just be a few more minutes.' Yep. That was Vicki's. Arghhh.... my husband and I exchange that quick glance of panic, because we know what may happen. Thankfully, a few minutes ended up being about 45 seconds, so no major problems ensued.

     I had completely forgotten that the Easter bunny had left the kids' baskets hidden in their rooms. So right before bed, the kids raced to find their baskets. And again, I felt like I was holding my breath. I wonder if Vicki will get upset because it's not Easter today? I wonder if Vicki will be ok with only eating one piece of candy out of her basket? I wonder if.... I wonder if.... I wonder if I can get the song lyrics to 'Rock the Boat' out of my head tonight?

     So I'd like to know where, you got the notion
     Said I'd like to know where, you got the notion
     To rock the boat, don't rock the boat baby
     Rock the boat, don't tip the boat over
     Rock the boat, don't rock the boat baby
     Rock the boat

Well, I'm a bit exhausted. Why is it that when you travel, and you SIT for hours in the car that you are exhausted when you get home and then you need to sit down? I never did understand that. But, boy am I tired, and a bit seasick from rocking the boat all day. :) Goodnight!

Day 9. Year 2.

Today Vicki needed a pajama day. A pajama movie marathon pizza eating kind of day. Oh wait... That was me. ;) I always feel a little bad with these kinds of days. You know the tv babysitter kind of days. Well I really needed to use our last day visiting family to kick operation cleaning out the basement into high gear. Vicki was more than happy to sleep in and bum around in her jammies. It's been such a difficult trip I thought that by not placing a whole lot of demands on Vicki that she would magically snap out of whatever is going on with,her. I know traveling from house to house is hard on everyone. No one gets enough time anywhere and no one gets enough sleep. But usually Vicki does better with her visual schedule. So everything was going along just fine, and sadly, by just fine I mean Vicki was quiet and seemed content... Until about 5:30, when Vicki got upset. I wish I knew what triggered it. Maybe it was the fact that she lost her purple marker in the couch. Maybe it was that Ally got a new barbie for an early birthday present. Maybe it was because she misses her pappy and realizes that he's not here, but doesn't understand why (I'm going to go with this one and pause for a kleenex...) Maybe she just wanted to cry. I know I definitely have those days. But whatever it was.... It made Vicki very upset. She cried for over an hour and I could not console her. I found her purple marker. Didn't matter. I tried to hug her. She pushed me away. We ate our pizza dinner. She kept crying. And after asking her forever to use her words and tell me.... She finally got interested in the pizza we were eating. So I offered get the choices. And of course she asked for olives on her pizza and we didn't have any. :( But she finally came out anyway, thank goodness. I was ready to run to the store for olives. I have togive kudos to Joey and Ally. A Vicki crying spell is not easy to sit thru. But they were amazing throughout. Ally tried reading a book to her and offered Vicki to play with her new pink bunny. And Joey alwayd thinks of soothing, kind things to say. And later Ally let Vicki play with her new barbie. Melts my heart. Right before bed Vicki told me goodnight and told me what she wanted on her schedule for tomorrow: breakfast, medicine, shower, grandma and pappy, lunch, McDonalds, home, medine, clean up, bed. You got it Vic!Here's hoping that's how,tomorrow goes.

Day 8. Year 2.

Easter and Spring is a time of new beginnings... and I feel like it's time for one for me. It's been a difficult few days for me. I've been struggling. Struggling physically (I still have a virus of some sort that is making the side of my face swell and making it miserable to eat anything.)and I'm still not sleeping much, struggling mentally with the drastic ups and downs Vicki has been experiencing this last week, and struggling emotionally (trying to even out my rollercoaster of emotions).

It is so hard for me, still, sometimes to grasp the enormity of the scope of autism which Vicki wades through everyday. My patience has been wearing thin. My always cheerful demenor (Ha!) has been not so cheery lately. I've been grumpy. I've been angry. And I've been tired. And, my oh my have I been whiny. Vicki has been having trouble, a lot of trouble the last week. Things have crept up on us that haven't been a concern for years. All I have to do is look at Vicki and I can physically see her struggling within herself. She takes a few steps forward and then a few steps back. Both figuratively and literally. And she is struggling, not knowing what she wants or what she needs. And all I can do is sit back and be patient and be there for her. And sometimes, quite frankly, I am neither with her. And I feel terrible. And I know she is hurting. And I hate that I can't solve the puzzles within her and make it all better. I'm her mom, that's my job. And I feel like I've been failing miserably. And my husband, he has been amazing. Filling in for me with his abundance of patience and gentleness with Vicki. He's tired too. Vicki doesn't sleep much ever, and especially when she is not in her bed. So he's with her all of the time. And I've been trying to help my mom go through some of my dad's stuff. And that sucks. It's a bit emotionally and physically draining as well. And my husband has been there. And I am so grateful.

We were standing outside today at a family gathering for Easter. We had just finished a scavenger hunt with the kids and Vicki was sitting on the ground playing in the dirt. And I was looking at my husband. And I was thinking wow, what a rock he is. And then I looked up at the clouds and the wind picked up a bit. And then a big black cloud rolled by and a few raindrops hit my forehead. And the sun was out. And I was looking for that rainbow. That rainbow I feel like I so desparately needed. And I looked back down at my husband and smiled. He is my rainbow. He is my love. And it will all be ok. And Vicki will be ok. I'm ready to pick back up, dust myself off, and jump back in. A new day.

Day 6. Year 2. Part 2.

'Good' Friday continued...

I’ve wanted to write about this for some time now. And I figured there is no better time, then a day filled with doubt, and sadness, and struggles. Because it is times like these when I need to pull from the strength of my husband, my children, my family, and my friends. But above all, I need to be carried by faith, by hope, and by love.

We all struggle. We all feel like there are days when we just can’t push through. When we don’t have enough strength bear the cross that each of us carry. And sometimes I forget that we don't have to bear the weight of our cross all alone. There are people ready and wanting to help take the burden off of you.

It’s how we handle the difficult days that make us who we are, that make us stronger.

My dad passed away 7 months ago. There is not a day that goes by that I don't think of him and miss him. Dying is a part of life, but that doesn't make dying or living any easier. I've been thinking of him a lot lately. Every 'first' holiday or special event without him triggers the memories and brings with it fresh tears... My parents would always come down to see us over Easter, and my dad would hide eggs for Joey, Vicki, and Ally every year. He loved it, we loved it. And we miss it.

Everybody struggles with death. Everybody struggles in their own way. How do you explain dying? How do you come to accept it? How do you explain dying to a child? And how do you explain dying to a child who has autism?

Death is never easy. And I think I knew it was coming for my dad. On the night before he went in for surgery, we drove to see him at home. I had been up most of the night beforet that... and I couldn't sleep. Of course I turned to writing. I penned a letter to my dad. There's not often you have the opportunity to tell a loved one everything that you feel in your heart. But I did. And I took the letter home to read to my daddy.

All of the unspoken words were spoken. I know he knew even if I didn’t say a word. But I told him anyway. I layed down across his bed and he sat on the edge. He stroked my hair like he did a million times before. I cried. He cried. I cried. He comforted. He laughed. I laughed through my tears. And here’s what I said:

To my Daddy, with love.

I’m sitting in the dark, just thinking about you.
Wondering if I can be strong when you need me to.

Wanting to tell you everything I feel I should.
Needing to tell you everything I think I never could.

Daddy I love you. You mean everything to me.
I hope I’ve made you proud of the person I’ve grown up to be.

Sitting here alone tonight, with memories of my Dad.
Makes me smile and laugh, these memories are not sad.

I remember so many things… let me list some now for you.
So we can share these memories together, for they’ve shaped me through and through…

…. I remember …. (and then I listed so many things I remembered. The good, the bad, the everything. Here are a few... )

…I remember the smell of your clothes after you spent an afternoon tying up tomato plants.
…I remember how I never wanted to let your hand go when you were walking me down the aisle to get married. I remember crying everytime I heard butterfly kisses, and still do.
….I remember feeling that everything would be alright with my pregnancy with Ally because you and mom were there for me. You are always there for me.
…I remember watching you put your arms around my kids when they cast their first line fishing in by the rocks in Tionesta.
…I remember just watching you watch Vicki. And look at the love in your eyes. And accepting her for the beautiful person that she is. And enjoying her for everything that she has brought into our lives.
…I remember watching you hold each one of my kids and seeing their tiny hands in yours and feeling so much love.
…I remember you feeling Joey’s muscles after he would do his push-ups. And how much Joey loved watching animal shows with you.
…I remember your face the first time you watched Ally play soccer. And every time you look at her.

There’s never a good time to say goodbye.
There’s never a good time to sit down and cry.
There’s never a good time to ask why.
There’s never a good time to die.

And I just wanted to tell you that I admire you so much, for alwaying being there for me. For taking the chance of dying to live, instead of living to die. I love you.
Rosezella

My dad asked my mom to call me the morning before he died about 2 weeks later after his surgery. He knew it was time and he wanted me to know. In a beautifully clear voice he said, ’You have made my life so happy.’

We got in the car and drove home to be with my dad as he died. Sitting in the hospital room with my mom that night watching my daddy die was so very hard. My mom always says, ‘I’m no good with words.’ But her actions spoke louder than words could ever do. She stroked his hand and talked gently to him and was there for him until his last breath.

Two days later I read the letter that I wrote to my dad for his eulogy. I almost made it through, until I got to the part about Vicki. The bond that he and Vicki shared was so unique. He always just was when he was with Vicki. And Vicki always just was when she was with him. Just a grandfather and his grandaughter. The day of my dad's funeral, I tried so hard to figure out how to tell Vicki. So on her visual schedule I put a pictures of my dad and Vicki hugging and the picture I use for Jesus when we pray. She went up to his casket, touched his hand and said in the clearest voice ever said:

Our Father, who art in Heaven,
Hallowed be thy name.
Thy kingdom come.
Thy will be done.
On earth as it is in heaven.
Give us this day our daily bread.
And forgive us our trespasses as we forgive those who trespess against us.
And lead us not into temptation.
But deliver us from evil. Amen.

And Vicki said goodbye. And I, I am still saying goodbye.And I am still struggling. And the Easter season has brought back all of it for me. And as I sat penning this post on 'Good Friday' in the kitchen I grew up in, I still felt my dad with me. And I still feel my dad with Vicki. And it will all be ok.

Day 7. Year 2.

Due to that fact that autism is beating the crap out of me today and the fact that I still am not at a computer with internet service... This is all I have tonight. I don't know what's been going on with Vicki. I don't understand. And I am very sad. I am crying for her. I just really hate this sometimes. Hopefully a good night's sleep, a prayer, and a bunny will be the recipe for a better tomorrow.

Day 6. Year 2.

Today was Good Friday. If you asked me 2 hours ago if it was a 'good' Friday, I would have said no. But by the light of my cell phone, which I am typing on (so please forgive the horrible typeing...which by the way is teaching me 4 things: 1. I'm getting old 2. My fingers are too fat for this touch screen, 3. I really am no good at using the swype function, and 4. my eyes do not like this small of a screen for long periods...) I think I would now have to say 'Yes. It was a good Friday indeed.' I could reflect on all the bad things that happened today... Like the fact that Vicki had another really rough day. She had alot of frustration and no words to explain how she was feeling. But I can, and I must admit... I need to do this on my computer... So I will post this now and type the rest of my blog on the computer and attach it tomorrow when I have an internet connection.... So until tomorrow... to be continued...

Day 5. Year 2.

Tonight I am not witty or creative. (Not that I usually am)... But usually I have an idea for a post. Tonight I am just tired; And I think I will finally start to listen to my body. So this post will be short.
Goodnight. :) 
Well, just kidding. I can't make it that short!

Vicki had a hard day. And that makes me so sad. Last year, I know I posted a lot about how Vicki's behaviors would cycle. You know, everyone has their good days and bad days. Only Vicki can't tell me why she feels good or why she feels bad, and when her mood changes sometimes it's so dramatic and quick that it catches me off guard. I used to be able to predict with fairly good accuracy how I thought Vicki would react in a situation. I really can't read her anymore at all. Times that I think she will be ok are the times when it all falls apart. And the times that I think will be difficult are a breeze. I feel like Vicki is living the Katy Perry lyrics:

You're hot then you're cold
You're yes then you're no
You're in then you're out
You're up then you're down

And I live for experiencing all of it with Vicki. The crying. The yelling. The laughing. The loving. The joy. The pain.  If I'm overloaded and overwhelmed and stressed and ready to take a break.... I can't imagine what she must feel. I can't imagine because she can't tell me. But she did tell me this morning when she saw Ally put on her long pink sparkly dress for school, 'Vicki purple dress. sparkles.' And she looked so lovely in her purple sparkly dress. Vicki loved looking like Ally. And Ally loved being looked at by Vicki. :) 

To make a long story short, I went back to the doctor tonight because I've been feeling odd the last day or 2 since I finished my antibiotic for my sinus infection. Today my face and cheeks starting swelling and getting painful.  And then, although I'm sure most of it was psychosomatic, I felt like I was having trouble swallowing. So, of course, I think it's some sort of allergic reaction. Well, I am now on 3 meds and I hope I can get this all figured out soon.  (Hence the short, rather uneventful post; I am trying to listen to my body telling me to go to bed...) It was odd though, tonight, how I felt as I said goodnight to each of the kids... It made me think in that very moment how very lucky I am. And I never want to take for granted how amazing life is... even when it throws you curve balls and roadblocks.