Sunday, April 1, 2012

Day 1. Year 2.

Well hi! And welcome to 30 days with autism, year number 2. Here we go. :) For those that are just joining me... I created this blog to try to give people a glimpse into my family, my soul. So often I feel that people have questions and want to know and want to help, but don't want to ask, and talking about autism is not something that I just put in a Christmas card update. I didn't want this blog to be preachy or whiny, I just wanted it to be real. And in the process of writing last year, I discovered a lot about myself and my family. And I discovered that blogging probably has helped me out the most. I guess I like to talk and I like to feel and I like to write about how I talk and I feel. :)

First off, a lot of stuff happens in a year. Wow. It's hard to catch your breath sometimes. You know? I have to admit, after writing every day for 30 days, I really missed it when I stopped. I thought I would be updating the blog a lot more than I actually did; I did post 7 entries when I really felt like I needed to 'talk' but that was it.  I will also admit that I was nervous about committing to do this again. (Thanks for all of the support, kind words and encouragement!) And now, here I sit, staring at a blank computer screen and thinking, 'Wow. I should have a lot to say....' Maybe I'll just mosey over to pinterest to get some inspiration. :)  Just kidding. Well, not really. :) 

A friend of mine wrote to me about a month ago and asked if I wanted to write up a little something for a middle school assembly; something about our family, and about what I would like people to know about us and about autism. I was extremely flattered and humbled that anyone would want me to write down my thoughts to share. And I sat down that night at a blank computer screen as well. I sat and sat and sat. What DID I want people to know? What can I possibly share that would make a difference to someone? And this is part of what I wrote:

My name is Rosezella and before my daughter Vicki was born, I had no idea what autism was. Vicki will be 10 years old next month and I still have no idea what autism is. And in 20 years, I will probably still have no idea what autism is. I can, however, tell you what family is to me and what love is to me. My daughter Vicki has autism. Yes she does. But my husband, and myself, and my son and my other daughter also have autism on the brain, not in the brain, but on the brain. Autism affects not just the child, but also the family as a whole. Did you ever make a paper doll chain where you cut out a person on the one piece of folded accordion-style paper and then you open it up and all of the people are joined together by their hands? Isn't it pretty? From one form, you get so much more. And although autism may have shaped Vicki's silhouette, she is, not now, and will never be, alone. She is just like her mom and dad and brother and sister in so many ways. And if something happens and you slip up and make a mistake while you are cutting out the shape... just tape it up! It will all be ok. Love tapes everything back together. I know this is a corny analogy, but it is very real for us every morning when we wake up and every evening when we go to bed. We tape up our mistakes. And we make sure to add lots of glitter to our days and our dolls. We celebrate everyday. We celebrate every Victory. We celebrate our Victoria. 

The month of April is always a bit more difficult of a month for me. Because even though Vicki has autism and I live it everyday with her the best that I can, I try not to let autism take over. There are a lot of awareness shows on, discussing, debating, educating. And it's hard for me to watch it and it's hard for me not to watch it. It's hard for me to talk about it, it's hard for me not to talk about it. It consumes me. About a month ago, my son and I were talking about things that happen in life that seem surreal. We were listing some examples, and I said autism. And Joey said something like, 'No. Not for me. Vicki is Vicki. Vicki has autism. Vicki is Vicki. It's not surreal. It's very real. It just is.' Indeed. Well said, baby.  There are lots of autism awareness bracelets and magnets and t-shirts and coffee cups for sale.  The shirt that says, 'I love someone with autism.' I just want to make up my own shirts that say, 'I love Vicki. I love Joey. I love Ally'. And the shirts that say, 'I have autism, what's your excuse?'... I want to make one that says, 'I live in the moment, how about you?' I learn so much about living everyday through my children. And although I don't understand what autism is, and all I wish for some nights is to unlock that puzzle, I have learned so much from autism. Vicki is an amazing little girl and she is a whiz at puzzles. I know she's got it all figured out inside. I'm just along for the ride to help her get it all on the outside. I hope you'll follow my ride for the next month.


  1. Rose, I love you! You are the most amazing mother, and friend. Over the years I have watched you struggle, succeed, ask a million and one questions, commit to training, love your children, love and care for your "adopted" children (vicki's therapists) I've watched you jump hurtles and you always pull everything together - i know it's not always easy and many times i've been sitting frustrated with you, or just sitting wishing I could take some of the stress away from you, but you always are able to make everything work, and it is AMAZING. You are AMAZING. Vicki, Ally and Joey are AMAZING, Mark is AMAZING, but YOU are absolutely incredible, and I know I speak for every therapist that has every worked with you and your family, you are extremely special, and so is your family, we all love you so much, and we will always be here, it isn't a job to us, it's family <3 I am so proud to know such a spectacular mother, and I can't wait to have kids so I can use the tips and insight you have given me over the years.