Day 12.

This almost never happens to me- I'm at a loss for words. Not in a bad way, just in an 'I'm not sure what direction I'm headed in today' kind of way. If I were narrating this blog aloud as I type, my husband would be snickering right now. I'm pretty sure he would say I was not at a loss for words today, or any day. In fact, he comes home after a long day at work, and I start yammering about random nothingness, with bits and pieces of useless tidbits thrown in. After about 5 minutes of this, he always looks exhausted. I don't understand why. :P Which is probably why many of you have trouble following this blog. I write like I talk. Can you imagine 24 hrs of this written stream of thought, spoken aloud? My poor husband. :)

I've been a little preoccupied today, finishing up tax preparation stuff. I really need that deadline to creep up on me to make me motivated and productive. It's always around this time of the year too, that I chastise myself for not being more organized. Papers literally just keep piling up. I wish there was some magic way to keep papers tidy and organized, and to be able to group them together into similar file folders or something. Then maybe label them with a black sharpie and keep them in a place that I could just glide out a drawer and voila, the paper you needed would be available at your fingertips... Hmmm... :)   Put that way, it all sounds so easy... so why do I still have overflowing boxes of stuff? If I could plan and build my 'dream home', there would definitely be a gigantic room dedicated to paper storage. It would look kind of like the library in the castle from Beauty and the Beast, with so much room that I needed a ladder to reach the top. It would have rows after rows of filing cabinets, a never ending supply of file folders and green hanging folders and those little clear labels that you put over the tab so it's protected and doesn't get bent. Oh, and also lots of yellow highlighters, pop-up page markers, and 1 - 1/2 and 2 inch colored binders with the clear front pockets. Funny how excited I get at the prospect of this!

I remember a few years ago, I went to a wonderful workshop on how to organize records, specifically all of the records that are associated with Vicki. There were a lot of wonderful tips and a lot of papers were handed out during the seminar. I just found those papers the other day, in a box with lots of other papers. I always feel like I am on the verge of having good ideas about storing and organizing Vicki's stuff. Papers from school. IEP meetings. How much do you save? Do you save all of the drafts that you went through to get to the final IEP document? Because in one of the margins you wrote a good note. Psychological reports. Speech therapy evaluations and updates. Occupational Therapy stuff. Educational evaluations. ESY documentation. Progress reports. Behavioral data sheets. Doctors reports. Developmental pediatrician stuff. And we never seem to be happy with the first specialist we see, so there is another set of the same stuff from another professional. Neurology. Cardiology. Endocrinology. Audiology. Visual therapy. Tomatis auditory training therapy. Play therapy.  ER notes. Medication sheets. Boxes and boxes of ABA data collection sheets. This therapy. That therapy. Notebooks upon notebooks filled with potty training notes. Communication notebooks from all of the years she's been in special education. And the list goes on. I also keep a binder for each of my kids for each year they are in school. Kind of a compilation of their work for the year. Why? Because I'm the mommy. And that's what this mommy does. :)  I carry my big green binder that Vicki drew a happy face on when she was 3 years old. It goes with us to every doctor's appointment and new therapist that we see. I keep card holders in the front to hold all of the business cards of the people who have worked with Vicki in. I keep a copy of her current IEP in it as well as some reports that I consider 'important.'. I keep a copy of her 'firsts' pages from her baby book in there too. It's a great handy reference and it has some cute baby pictures of her in it, but it's continually a work in progress... Keeping records and papers up to date seems like a full time job in itself. And there is always an update that I have to write for someone. Don't even get me started on my computer desktop's 'filing system'. It's not in the greatest shape either. I want it to be. But it's much like my mind, always jumping around from place to place.

Oh, and I forgot to mention all of the books and literature I've compiled over the years from researching autism and different interventions. There is always another article I want to read and another therapy option I want to learn about. I find that all of this goes in cycles for me though. Sometimes I just need a break. I don't want to read another article about autism, or see another talk show about early intervention or how someones child had autism but now no longer carries that label with him/her. I don't want to read someones blog  :) about their struggles with autism. I don't want to commiserate with another mother who has a child on the spectrum and I don't want to have to explain myself or my daughter, or our family's life to anyone. (PS... this blog is harder to write than I ever thought it would be... and I think after day 30 I will be turning off my computer for quite some time. Maybe even long enough for me to clean my basement... But probably not that long!) And then there are other times that I can't get enough of it. I want to sponge everything up so I can squeeze it all out onto Vicki and hope that something, anything, will give her what she needs. I feel like I am racing against time and time is winning. Vicki keeps getting older. And I feel like I never do enough. I'm scared that I'm missing something or that my efforts aren't good enough. Every day Vicki's needs change (as do my other kids... as does everyone...) and I try to adjust my approach every day too. I always try to stay one step ahead but end up 2 steps behind.

This is random, but a good example of how things change everyday. I used to think the top of the refrigerator was 'safe' so if there was something I didn't want Vicki to have access too, I would just slide it on the top of the fridge. The other day, I just sat and watched Vicki. She went over to the refrigerator, looked back at me and proceeded, without even having to stand on her tiptoes or look like she is straining in anyway, to get the donut box down, open it and get a mini chocolate donut out. She ate it, covered the box back up nicely and placed it back on top of the refrigerator. :)  That's my girl. Now where do I hide them? BTW, the mini chocolate donuts were only in the house because I sent my husband to the store for milk. Yep. He always comes back with the milk (which is good) and some sort of pastry, usually with chocolate in it in some form or another. He also ends up with steak, cheese, and random jars of peppers or salsa. :P

Let me just end tonight with a few things that made me smile today. They are the little things that are the big things in life. Vicki usually has strawberry milk before bed. Tonight she got her milk out and instead of getting the strawberry syrup, she reached for the chocolate syrup and said, 'chocolate milk'. Huge!!  1. For choosing something different. and 2. For narrating her thoughts out loud. :P  Then tonight while we were 'talking' about her day, which is by far one of my favorite parts of the day, she got to the spot where she usually says 'strawberry milk'. She stopped and I could see her thinking and she said, 'chocolate milk'. Yay Vicki!!!  I also found out from Vicki that she had a "pink bunny marshmellow, purple bunny marshmellow,  and green bunny marshmellow' today at school. And when I asked what her favorite part about school was today, yep... winner goes to the colored bunny marshmellows! One of the other things that I think is so cute and age appropriate is that she has developed some slang talk.... Instead of always saying yes, she sometimes says yeah. I love it!! You have no idea, well, I guess you do, since I am telling you... but, it's been an amazing process to have discussions at night with Vicki. For years and years the only glimpse I had of what Vicki did during her day at school was what was either written to me in the communication notebook or told to me by her teacher or para. To have Vicki volunteer information up on her own has been truely an amazing gift. I try to guide her through the discussions, her teacher has been wonderful about giving me some talking points... for example I knew that she had PE today, and Vicki got to that part on her mind's visual schedule and said PE. When I asked what she did in PE she said 'throw catch balls. Yellow balls, orange balls, purple balls, blue balls, green balls... etc..' I also knew from her teacher which little girl she played with today in PE and although Vicki couldn't recall her name, when I asked her what color hair the little girl had, she responded, 'yellow'.  Oh, and one final thing I will never take for granted. When I went to leave her room tonight, Vicki looks up at me, pats me on the head and says 'I love you mommy.'  Without me telling her that I loved her first. Do I think she knows what that means? Absolutely! And it is sweet, sweet music to my ears. It's like a kiss from heaven right to my heart.  xoxo