Day 4.

I fear that I am going to do exactly the thing I didn't want to on this blog. So if you are looking for an uplifting little read, tonight's not the night for it... It has just been one of those 24 hours... It's now 1:10  2:10 am and for the past 45 minutes I have been up in Vicki's room doing what I'm about to describe, again. It started not long after I posted last night. I watched a dvr'd tv show with my husband then decided to turn in 'early'. I hadn't heard any noise from Vicki's room and had thought she had fallen asleep 'early' as well. We have a video monitor in her room; I glanced at our screen we keep downstairs right before the tv show and she was all snug and covered up in her blankets. When I got upstairs and was close to her room, I realized, well, smelled actually, what now needed my attention.  (I could go into a whole backstory of the trials and triumphs of potty training an 8 year old girl now... but honestly, I don't have the energy at this moment.)  I will say however, that there are many variables that come into play while potty training Vicki  (such as safety, communication and sensory issues to name a few...) All mommies know - no child is the same, there are ups and down with everything. There are 'you think you've got it days', then, 'nope.. days'. With Vicki, it has been an ongoing process since she was 3 and she really has come such a long way. ( I am trying hard to focus on that tonight. ) And, seriously, if you want to- skip down past the italacized portion... I don't mind. I don't want pity; that's not why I'm writing about this. I'm not exactly sure why I am writing about this, but I have a lot of laundry to do yet tonight. So I might as well. :) I wrote this to myself back in July of 2007. It kind of sums up the last 24 hours for me.

Not again. We go into her room and there she is sleeping, with feces again all over her hands. We wake her up and it starts anew, another bath in the tub; at least there was nothing on the sheets this time, but there was a little on the comforter. Windows open, more Lysol. This time as I am bathing her and scrubbing the feces from under her nails, I am crying. I am crying for myself, I’m tired and I just did this. But mostly I am crying for my daughter. It’s all over her mouth this time and on her nose. I don’t understand. Why doesn’t she understand that this is not right, this is not what you do? Why can’t she just yell for mommy to tell me she needs changed? Why can’t she just go to the bathroom herself?  Why? Why is she trapped in this world she’s in? To look at my daughter and scrub the feces from her mouth and under her nails, I just cry more for what she has lost and what I cannot seem to help her with. I cry as I pat her dry with a towel and run a comb through her long curly hair. I cry as I put another diaper on her and another new set of pajamas. I cry, and try to hold back the body racking tears as my husband watches from the bathroom door. And I cry even more when she laughs because I am crying. I pull her close to me and hold her tight… Her room is clean again, but I don’t have another comforter, the other one is still in the dryer. I put her to bed with the lingering smell of Lysol and feces still in her room. I clean the bathtub again, take out the garbage again, throw the comforter in the washer, and take another drink of coffee. Then I go to bed and cry. I pray over and over again for God to help her and to help me. I pray to be strong, so that I can get up again if I need to.  My husband comes to bed after sitting in her room for a while. He lies down; I try to sniff back my tears. He grabs my hand and I cry again. I blow my nose and he holds me. I cannot stop the tears from flowing. I get up and go downstairs. I look at some pictures of our family.  I write down my thoughts. I’m done crying for now. I look at the clock. It’s 3am. I should go to sleep.

Enough of that s*it. No pun intended, well, actually, yes it was intended. Wanna hear about the rest of my day??  I can't say that it gets a whole lot better... After I drop the kids off at school I run to the dollar store to pick up more resolve carpet cleaner and some good smelling candles. I see the Autism Speaks Donate sign on their door for autism awareness month. Sometimes I feel bad... it's like everywhere I turn, autism is there. I just want to go get my cleaning products in peace without thinking about why I have to buy them today. Anyway... I got the stuff I needed and went to the check out. The girl at the checkout asked me if I wanted to donate a dollar to Autism Speaks. I thought about it for a second, and then said sure. I think she was a bit surprised that I said sure. As I was signing my receipt the girl who waited on me and another employee at the other register started talking. Now I know they don't know any of my story. I'm sure they didn't look at me and think, now that lady has a daughter with autism. But, anyway... I just don't think you should talk about this period. At all. Especially in front of a paying customer that just made a donation to the charity your store has chosen to support. Where was I? Oh... the girl was saying something to the effect of, 'yeah. i had to go in the back and listen to that long winded phone recording about autism and stuff and it just went on and on and i stopped paying attention somewhere in the middle.' And the guy employee was saying something like, ' yeah, autism. what do i say ... man? yeah, do you got autism guy? are you autistic?' Okay.. well I may not be remembering the conversation exactly right now... maybe because it's 1:30 in the morning now, or maybe because I had a tight feeling in my throat and was bubbling over with anger while I was standing there listening to them be so ignorant about autism... I used to carry the 'autism info' cards the NAA had. I know I could have said something, should have maybe said something. I kind of felt like yelling at them and thanking them for the carpet cleaner that I bought from their store because I have a daughter who has autism and doesn't fully understand... But I knew I would just end up crying, so I calmly took my receipt, and later today, decided to fill out that survey of my experience with the dollar store today. So I did; and I felt a little better afterward.  

I left that store more flustered than I was when I went in. I decided to run to walmart because i needed milk. And I didn't want to go back home yet and clean.  I was in walmart just meandering through the aisles not looking for anything in particular although random things ended up in my cart... when over the loud speaker the manager says that they have to evacute walmart because of some sort of building safety code that says when they don't have running water, they need to vacate the premise. Really???  (They are doing some expansion work there, so they must have shut the water off or something...) At least they were letting people check out at the register before leaving the building. I ran and got my 2 gallons of milk, stood in the long line, and then went home to clean. The last thing I needed to do in Vicki's room was steam clean the carpet today. Resolve didn't get everything. And I love my steam cleaner. Well, I used to love my steam cleaner. Until it decided to gang up on me today too... 2 hours. That's how long I was trying to figure out what was wrong with it. I even got the instruction manual out. After sweating and pouring over the steam cleaner, I finally give up. It was seriously taunting me. I would spray the water with the trigger and then it would suck up the water just fine the first pass. Then I'd do it again, and nothing.  I shut the machine off. Then try it again. Same thing. Then nothing. Ugg... That ol' steam cleaner has been good to me for the past 7 yrs or so. Even my engineer husband said he didn't think it could be saved. Now I need to buy a new one. Rather quickly. :(

After I give up on steam cleaning her carpet, I get angry with myself for wasting so much time on it... But the phone interrupts me. Yep. You guessed it. The school phone number again. :(  I have a feeling it's not a good thing today. I was right. Her teacher called me to warn me... Vicki had seen Ally on the playground She has been very good at working on her social greetings and saying hi to Ally when she sees her. In fact, they have to stop Vicki from hugging Ally so much. :)  The girls usually get a kick out of seeing each other at school. But not today. Vicki decided to greet Ally with a push. Ally fell down, landed in the mulch, and cried. A little while later the same thing happened. :(  Everyone was great with Ally, comforting her and making her feel better. Vicki had to give up all of her pink butterflies that she uses for treasure box at the end of the day because she pushed Ally. So we all knew what was coming. Let's just say I was at school well after car rider line was over. I have to give it to Vicki. She's very strong willed. And she wanted her lollipop, grape today... And I have to give it to Vicki's teacher and paraprofessional. Vicki didn't get her lollipop. I'm going to change gears slightly here... Vicki didn't choose to be born with autism. I didn't choose for my daughter to have autism. But these teachers and paraprofessions - they choose to work with children who have autism. And everyday I am grateful for that. They always go above and beyond. Always. Today was no different than countless other days they worked through behavioral issues. And to have a teacher that will jump in the back of my van and ride home with me and then have her paraprofessional pick her up at my house because we were not sure how Vicki's mood would be. (There is nothing scarier than driving down the street and hear the unclick of the seatbelt and try to reach in the back while driving to calm her down.)  That is dedication. I am so so very lucky to have a wonderful support system. To have people that pick me up when I fall down. To comfort me. To listen. To write the most amazing words that leave me reading and rereading them  for strength. To be there for Vicki and to love her unconditionally. To come back day after day. To give Vicki every opportunity. I am reminded tonight of Vicki's kindergarten celebration almost 2 yrs ago now. She stood up on the risers with all of the other children and sang her little heart out. "Big, big dreams. Lots of big dreams. Things I want to do someday." Vicki was clapping her hands and stomping her feet and singing her little heart out. That's what it's all about. When she flashes that smile of hers and her dark curly hair bobs up and down around her. That's it. That's what I live for.