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

Day 1. Year 4.

     I can't believe another year has passed already! It's been so long since I've written here that it took me a good 20 minutes to find my password. :)  And I can't believe that this is the 4th year that I am writing. Gosh I've missed it. I missed it so much that I am currently doing a reflective post a day for Lent on my personal facebook page. So, my apologies to any of you who happen to read both. That's a whole lot of me. And a whole lot of words. ;)
     So much has happened this past year with Vicki. And so much happens in the span of an hour with Vicki. Where to start? I feel like asking, 'do you want the good news? or the bad news first? Well, before I go freaking you out 'bad' news isn't anything to worry about. To me bad days and bad stuff is icky, sure, and times it feels like that's all there is. And it's all consuming. And it may be for a moment. Or two. But, it's not, not really. It's just life. I haven't been able to get a song out of my head since it popped in at Vicki's developmental pediatrician's office yesterday. "You take the good. You take the bad. You take them both and there you have... The facts of life. The facts of life."  
     I think I am going to start where I left off. I just re-read my last post from 11 months ago. 11 months ago! Holy moly! Vicki has grown so much in that time. Like, literally. At the doctor's yesterday, she officially measures  5 feet 4 and 1/2 inches. Wow. Besides literally growing, she has grown so much and done so much this past year... I can't even begin to describe it. The seed that I planted on my last day of last year's post... Cook with Me. Love, Vicki. It's growing. And she's thriving. And Vicki is blossoming. It's quite frankly the most beautiful transformation I have ever witnessed. And I feel like I am tripping over the words that are pouring out. I want to tell you everything. And I'm sure I will. But for tonight... I want to ease back into it. So, I thought I would post the poem that I wrote that explains a bit of what Cook with Me. Love, Vicki is. And if you get a chance... you should come and check out the facebook page I created for her. And see her beautiful smiling face. And her eyes. In some of these pictures, I get chills looking at her eyes. She is so there. So here. So in there. So with me. I could stare into those eyes all day. Some of the things she has been telling me. With her eyes, with her cooking, with her confidence, with her words, with her love. And I know she has so much more to say. I am listening. And I am feeling. And I am loving. And I am so grateful for all of the support and love that she has been getting. I often wonder what I am supposed to do with my life. What my purpose is. What my 'job' is. And some days, I feel without a doubt that my purpose is to give Vicki the chance. Give her the tools. Give her the means to let her explore her passion. The whole autism awareness... and the puzzle pieces that represent autism... I feel like I am learning everyday, not what autism is or does, but who Vicki is. And I truly believe that cooking and creating in the kitchen is the missing piece of the puzzle for her. And if I can help her put that puzzle together and help her unlock herself, well, then, I have the most important job ever. Ever. Hope you enjoy the poem. xoxo

Cook With Me. Love, Vicki

Let me tell you a story about a young girl...

A young girl named Vicki, who loves to spin and to twirl.

She's 11 years old, has beautiful curly brown hair

If you see her in a store, you might stop and stare...

Not because she has autism, yes, she does have that thing

But because of the pure joy and zest for life that she brings.

She has a spring in her step and a twinkle in her eye

And if you get to know her heart, it will make you want to cry.

She has taught me to love and taught me to hope

She has taught me to listen and taught me to cope.

She has given me so much, now it's my turn you see..

I want to give her an adventure... won't you come along with me?

It's exhausting to be sad and cry over stuff

I put my foot down and said that's enough.

Let's give Vicki adventure and passion and fun

There's a whole world to discover and we've only just begun.

So here's my idea, won't you please help me out

It's a work in progress, here's what it's about....

Vicki loves food, loves to create and explore

You can give her that... and so much more!

For just the price of a stamp, you can send Vicki love

Enclose a recipe with a picture, or whatever you think of.

Here is the address to send your recipe to...

I promise you won't regret it if you do.

            Cook With Me. Love, Vicki

            PO Box 1386

            Stafford, VA  22555

Send a recipe for an appetizer, a side, or a main dish...

Send a  recipe for a drink, snack, or a dessert if you wish.

Cut out a magazine picture, have your kids draw some food

It doesn't have to be elaborate, it can be cut-out and glued.

Vicki will go to the post office and turn the lock with the key

Oh an adventure awaits her... what could it be?

Vicki can read some of the words that you write down for her

Who know, maybe Vicki will become a restaurateur!

She'll shop for the ingredients... she'll prepare the recipe

I'll take pictures and write stories so that you can share this with me.

There's a Facebook  page called "Cook With Me. Love, Vicki" where I will post updates

Please "like" it and you will see the fun that awaits.

Thank you in advance for sending Vicki your love...

Please share this with as many people as you can think of.

xoxo Vicki's Mom

Day 30. Year 3. Take 2.

So here I am. Ready to say goodbye to my blog again for a while. It kind of feels like a part of me. I will miss it. A lot. But I have to admit, I am looking forward to a bit more sleep and a bit more of mindless dvr'd shows in the evening. :) 

Lots of good things today. It was sunny! It was the first day of a new month! My mom drove down this afternoon (this is the second time she has driven down since my dad died... I couldn't be more proud of her)! It's her birthday today. And I was so happy to be able to spend it with her. She got to see Vicki dance (and Vicki danced SO well tonight!). She got to hang out and play spirograph with Ally. And she got Joey to give her a backrub. :) Vicki was really excited to see Grammie here... because she know that usually when Grammie is around, good food always follows! :)  We celebrated Grammie's birthday with a strawberry pie. Yummy! And I wasn't quick enough... Vicki licked the plate clean and I am OK with that.  One less dish I have to wash. Just kidding. Kind of. :) Vicki was so happy tonight. She's been very affectionate with me; She's been cradling my head between her hands, stroking my hair, oh, and smelling my hair too. I feel so loved. It is so powerful when she feels so much affection towards me.

I really hope that you have enjoyed my blog this month. I have enjoyed writing it for you. Well, if I'm being totally honest, it's for me.  It is always so therapeutic for me to write. I hope you've laughed a  little and cried a little. I hope that something, anything, that I have written has touched you in some way or another. I hope it helps you to understand Vicki's autism and our lives a little bit better. I hope that you've learned something. I really just hope it has made you think. I know it makes me think.
I want you to find something to identify with. Whether you have a child with autism or not, whether you know someone with autism or not. Whether you are a parent or not. We are all just trying to do the best with what we are given. I hope that I've balanced my whining with my pride. And my tears with my joy. I don't write for pity. Well, maybe I do. I don't write for praise. Well, maybe I do. I write because I can. I'm not good at it, but I can do it. So often, as a parent, and a parent with a child that needs just a little bit more... I feel like there is nothing left for me. My writing is for me.

So... I've been thinking about a lot of things. I have a lot of ideas. I want to continue to write. I want to continue to share. I want to continue to give you Vicki. Vicki has given me so much. And even though many of you don't know her, I hope you know her through my writing. And I hope she has given you something to hold onto too.

Because I am a day late with writing my final post for April... it is, of course, May. And May is a very exciting month for Vicki. It's her birthday month! This year her birthday falls on Mother's Day. Nothing could be a sweeter gift than that.

Anyway... I talk about how much Vicki has given me. And now I want to give something back to Vicki. And here's where YOU come in, hopefully!! It's no secret that Vicki loves food. It is such a strong connection for her to the world... to a world that is not solely autism. Food nourishes her soul. Food nourishes her mind. Food allows me access to Vicki in ways nothing else can. Today I went grocery shopping. And recently Vicki has shown me what a joy it can be. I used to despise grocery shopping. Now I look for interesting things to buy. I look forward to unpacking the bags of food with Vicki. Vicki uses her eyes, her ears, her nose, her mouth, her hands...to explore the wonderful textures and aromas. I've been trying to think of all the ways I can use this connection to food to teach Vicki about life. And I have come up with something.

Cook with me. Love, Vicki.

That's it. That's my idea.
Can you help?

I just opened a P.O. Box for Vicki.

As a project... for her birthday... and for the summer... I would LOVE it if you would send Vicki mail. In particular, I would LOVE it if you would send Vicki a recipe. Any recipe. A recipe that you love. A recipe that you think Vicki would love. Any old recipe would do. She loves to make everything. Send a recipe for a spaghetti dish. Send a recipe for a sandwich. Send a recipe for a cookie. All I ask is that there is a picture associated with the recipe. Cut one out of a magazine. Write one up on a recipe card and take a picture of it. Have your kids draw a picture of the food. Whatever. Be creative.

I decided on a P.O. Box because I want Vicki to go out and be a part of the community. I want her to be able to walk into the post office, find her box number, and open it with a key. I want her to read the words to the recipe. I want her to talk about the ingredients. I want her to enjoy the whole process. The excitement of opening a letter. Finding a wonderful recipe to make. Going to the store to get the stuff we need. And making it. Oh, yeah.. and eating it too! :) 

I want to make her a scrapbook of your love. I want to make her a scrapbook of the recipes you send. And I want you to enjoy the gift you have given her. So, I am asking... please take the time to find a recipe and send Vicki a letter. Just a stamp. And I promise you that you will get so much more in return. I am going to create a facebook page for Vicki's recipes. I will post pictures of her making and creating the recipe that you send. I will write stories of what she experiences. Because I know that in her experiences, I will find something amazing. Every time. So, please if you could... send Vicki a recipe. Share this post. And share Vicki. Because she is too damn amazing not to be shared.(at least that's what her biased mom thinks!)

Here is the address:

Cook with Me. Love, Vicki
P.O. Box 1386
Stafford, VA  22555

Thanks again for reading. And thanks again for caring. I look forward to writing again soon... and I *think* that I just created a facebook page called Cook with Me. Love, Vicki. But, I'm not sure... :)  So, please like it if I actually created it and you can find it. I'll keep working on that one... One piece of technology at a time. :) I will leave you with Vick's favorite phrase: And we're making.....   (insert type of food here.) That's all folks! Hopefully it's only the beginning...

xoxo

Day 30. Year 3.

30 days. And on my final day writing... my internet connection is all messed up. I have attempted multiple times tonight to write and I keep getting disconnected... My phone is also messed up. :(  Maybe it's all the rain we've been getting that's leading to a not so good signal strength...maybe it's fate telling me I need to keep writing... :)  who knows. Whatever the reason, I need to extend my writing by 1 day. I am tired of seeing the little yellow box with the red exclamation point in it pop up and tell me I have no internet connection and that an error occurred while I was trying to save or publish my post.
And I have a lot to say tonight! How rude, internet connection. How rude. So.... until tomorrow my friends.... Silly technology. Please come back tomorrow night. Same time. Same place. For my 30th day of writing this year. For my little wrap up. And.....
I really need your help. To bring an idea of mine to life. So.... if you are willing to help me bring that beautiful smile to Vicki's face... please come back tomorrow and I will tell you how I hope to achieve that! And hopefully my internet connection errors will be all fixed by then too... how anti-climatic tonight.
xoxo