Before I start in on tonight's post, I just wanted to say Thank you! Thank you all so much! I didn't mean to freak everybody out. Yesterday was a bad day. But it definitely wasn't the worst day I've ever had. And it was no where near as bad as so many of the days we had last spring. I think everything just kind of fell apart, including me. I was so humbled by all of your texts and messages and prayers. Really. It is nice to know so many people care. And it is nice to know that there are some people out there who read and follow my blog... it makes me feel less like I am talking to myself. :) And the less I talk to myself, and answer myself, the better. :)
I am in much better spirits today. There were lots of things today that were just as bad, if not worse, than yesterday... But there were a lot of good things today too. And I choose to focus on them tonight.
First of all... I wanted to let you know about Vicki's necklace. At 7:50 this morning, Vicki asked for her necklace. (And by 7 am, I had already heard from quite a few of you with thoughtful words and prayers). It was really quite amazing to me. As Vicki was asking for her necklace, it was as if I felt all of you thinking about her and praying for her at that exact time. And it felt so nice. It felt so nice to know that even though Vicki and I were alone in the bathroom getting ready for school, we were not alone at all.
I know I sound like a broken record, but Vicki never ceases to amaze me. Vicki asked for her necklace. I paused, took a deep breath, and said, necklace is broken. Vicki looked at me and repeated broken. Then she paused and said glasses. And that was it. She had moved on. And we went about our day. (There were a few times this morning though getting ready for school where there was hesitation on Vicki's part. And that still makes me very nervous. But we did it. We got to school.) And you would not believe where her necklace was. I guess it had fallen off at school and it was in a Ziploc baggie in the bottom of her backpack. I just didn't know it. So, all good things. Vicki was able to do something different and not wear her necklace this morning. (Which may be a good thing because she has been putting it in her mouth a lot lately.) And we still have the necklace that means the world to Vicki. The necklace Ally gave to her Big Sis.
Moving on.... another way to lift your spirits... do something for yourself. So I did. I colored my hair, not because I wanted a new color but because graying hairs makes me feel stressed and old and very, very icky. I washed a little of that gray right out of my hair, and along with that, just a wee bit of stress.
'Tis the season for IEP meetings and ESY meetings and BIP meetings and Triennial meetings. Today my husband and I had Vicki's triennial meeting. As I mentioned yesterday, I really don't like reading standardized testing results and reports. They depress me. Those papers and those numbers are not Vicki. I know Vicki and I know how brilliant and beautiful and amazing she is. And you are not going to find that in any one report. And that saddens me. There is no one that I have ever known before in my whole life that works harder than Vicki. And if you look at the numbers, the numbers don't show you the grit and determination and perseverance of this little girl.
Anyway... even thought I don't like reading the reports, I do like dialogue. Because I am with Vicki and see Vicki and know Vicki's every move... I think it tends to make me less objective sometimes. I end up falling into tunnel vision with Vicki and I get complacent and don't try to shake things up at all. When I read observations that others, who don't know Vicki like I do, make... it's very interesting to me. I see things that I didn't see before, or I see all of the time I don't see them anymore. I really don't think that sentence made sense, but I know what I am trying to say. I am just so involved in everything Vicki that I lose sight of some very obvious observations. Anyway... it's interesting.
Do you want to hear something really bad? Sometimes I look forward to school meeting days, not because I like meetings... no I really don't like meetings. I tend to cry a lot before and after. I never feel like I do enough for Vicki. But... one of the reasons I like meeting days is that my husband takes the day off work... and after our meeting, we get to go out on a lunch date. We haven't gone out on a 'real' dress up go out to dinner and a movie or go have a drink date in months and months. Our dates tend to include Vicki, when we grab lunch after a doctor's appointment. :) So today, after our almost 2 hour meeting, we went out to lunch. Tropical Smoothie Cafe baby. :) And then we went to Lowe's. :) We were going to go to Bed, Bath, and Beyond... but there just wasn't time. (movie quote, anyone?)
I'm going to skip over some of the not so good stuff today... again because I am just not comfortable talking about it right now... But I will say...well... autism. you suck. again. Big time. And I hate what you do to Vicki and to me and to our family. I hate the stress and I hate the tears and I hate, hate, hate the fear. As Vicki gets older, I have become more cognisant about how autism affects me. And I hate to say this because this makes me feel weak, but I am afraid of Autism. I really am. Sometimes the fear of what could happen is almost paralyzing to me. Autism does not just socially isolate the child. Autism isolates the parents and the family as well. Fear isolates me.
I'm done with that for tonight. I'll come back to it later.
I want to end tonight on a positive note... Yet again, Vicki never ceases to amaze me. I know I've told you how important Vicki's visual schedule is to her. She holds that pink binder with the velcroed pictures on it like her life is depending on it sometimes. And maybe it is. That schedule helps her to see what to expect, to know what's coming next, to anticipate, to prepare. Very rarely do I deviate from what she has posted on her schedule. But tonight... oh tonight was such a beautiful spring evening. The weather was perfect. And today is my crappy 'run the kids to just about everything they are involved in night' all in the span of 3 hours...Vicki had dance class. Ally had soccer practice and scouts. Joey had a physical fitness assessment for a merit badge he is completing and then scouts. So, tonight was my chick fil a cheat night. :) I normally run Vicki and her aide home after her dance class. But tonight I didn't. Even though home was on the schedule after chick fil a... I took her to Ally's soccer practice. (It helped that I knew my husband was there and could help us out with Vicki if we got into trouble.) We had a blanket in the back and we asked Vicki if she wanted to have a picnic outside and play on the playground. She gleefully got out of the van clutching her half eaten chicken sandwich and skipped with her aide down to the grass. The wind was blowing, her ponytail was bouncing and she was happy.
And there is nothing more than I could ask for. xoxo
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