Some days I am surprised that my blood pressure is in the 'normal' range. And it's odd... because so many of the things that I worry about don't actually happen. I'll just have a moment. A moment where something triggers a slow panic inside of me. I think the best way for me to describe this to you is to just describe little parts of our day in as much candor as I can.(Sorry if it's too much information!) So you can see a few of the moments for yourself. And maybe you can see a little bit more of the routines that I don't even pick up on anymore because it's just become a normal part of getting through the day.
A look at very basic part of our day broken down by what I am thinking as I go through it:
Monday morning.
First day back to school after a week off for Spring Break.
7:30 am. Go into Vicki's room. Turn the light on (The light switch is on a dimmer that is mounted on the wall on the outside of her room because many years ago Vicki wouldn't let us turn the lights out for her to go to sleep. So we came up with a way to dim the lights down very low so it mimics darkness but still allows her light switch to stay in the on position.) Give Vicki her visual schedule for the day. Say a little prayer. Drape myself over Vicki next to her and tell her good morning. Don't go right in for a kiss because she likes to keep the covers up over her head while she is snuggling Layse Black Cat. Put the visual schedule in front of her. Some days Vicki looks up smiling and starts saying her schedule right away. That's a positive note that the morning is looking ok. But, that can turn on a dime. Today she kept the covers over her head and said no.
Uh oh. Not a good sign. I feel the slight tug of panic. I push it aside.
I start talking her through her schedule. Monday. April 8. Mommy. Take a Shower. Car. Joey. School. Home. Medicine. Old medicine. Breakfast. Calendar. Call of the Wildman. Car. School. Home. (Attendant's name). Walking. Old medicine. Yogurt. Working. Reading. Homework. Exercises. Dinner. (And by this time if Vicki hasn't seemed interested, she will perk up and say, 'We're making.....' and then repeat what I say.) Phew. It worked this morning. Let out a sigh of relief. Chicken. Potatoes. (and Vicki chimes in butter, cut, salt) and cauliflower. Toothbrush. Dessert. And she says, 'Cookie. Chocolate Chip cookie' and she smiles that slow Vicki smile. Medicine. Old medicine. Clean-up. Bed.
Then I pull her butterfly rainbow blanket gently off her and she jumps out onto the floor beside the bed. She sits cross legged with her schedule and Layse Black Cat in her lap. I start making the bed. Then I notice that the sheets are soaked again. So instead of making the bed, I strip the bed and crumple the wet bed clothes up at the top corner of the bed. Vicki says, 'Spray' and I go get the Lysol. She promptly holds her nose and I spray her mattress down. (This doesn't cause me as much anxiety as it did 7 months ago.) The first time her bed was wet after Vicki started having all of this trouble with PANDAS... I tried to get her to go through her morning without making the bed, because I knew I had to change the sheets. She wouldn't move off of the floor. We worked through it the first few times and now this is kind of her secondary routine, because like I said before, I have had to wash the sheets more often than not in the mornings lately.
After I spray the bed, I shut the light off. That's her cue to get up off the floor and follow me into the bathroom. She pulls her pants down and throws her diaper in the garbage and her pj pants in the laundry basket. If she pooped she will stand up and say, 'Mommy wipe' and then sit back down. I check her project lifesaver band that she wears 24/7 around her ankle. Wait for the red blinking light to say the battery is good to go. Then sign and date the sheet the police provide for me. I get undressed myself and jump in the shower. Vicki sits on the potty while I shower. As soon as I shut the water off and open the curtain she takes her pj top off and jumps in the shower. I assist her with the soap and shampoo. As soon as I shut the water off she says 'pink towel' Today she did have a pink towel to use. Sigh of relief from me. Because the first time all of the pink towels were dirty since her PANDAS stuff started, it was not a pretty site. It took me quite a while to convince her that she could use the princess towel and it was ok for it to be 'different'. Pink towel was dirty. And then Vicki would say, 'different. Maybe tomorrow.' And I would agree. So, I get out of the shower (and yes, I have a favorite color towel that I use myself, I like green. But... the difference is... if the green towels are in the wash, I am ok with a blue towel or a pink towel. It doesn't throw off my whole day.)
I start getting dressed, and yes, I guess I have a particular way I usually get dressed too... for the most part. As soon as I reach for my bra to put on, without pause, Vicki jumps out of the shower and sits on the toilet again and she uses her pink towel almost as a little red riding hood cape. :) It's actually very cute.
When it is Vicki's turn to get dressed, the conversation goes like this (from Vicki). 'Panties. Spray (a good smelling spray we started using to stay fresh. too much information?) Bra. Deodorant. Smell. (and she likes to smell the cherry blossoms deodorant). Pants. Shirt. And if I try to go in a different order... I get a ' No!!' from Vicki and some yelling. Some mornings I will have her talk about the colors of her clothes as she is putting them on and make her assist me more Other days, I am just praying to get through this..... Because one year ago this part took 3 hours to do. And don't think I ever forget that. Any slight hesitation with Vicki... and I can feel the panic slowly rise.
Anyway... once she is dressed, she asks for 'apples' which is the detanglar we use. She loves the different smells and fruits we use in the shower. Such a girl. :) But last year... if we had run out of one shampoo and had to use a different one.... it was not easy. And last year... if I tried to put her in different colored underwear other than white.... it was not easy. And for a while if I tried to put a shirt on that wasn't red, or her 'iron man' (superman) shirt on.... it was not easy.
It takes me a while to work through her curly hair to get it detangled. She is a trooper. I choose a color for her hair tie and a style for her hair. Today it was pink. And I put her hair in a ponytail. (Remember... last year... it had to be red. And it had to be 2 red piggytails. Pocahontas.). After I finish her hair, she asks for necklace (the one Ally got her) and glasses. She grabs Layse Black Cat and her schedule and heads downstairs.
After we get home from dropping Joey off at school, Vicki goes to the kitchen and takes her medicine. First- clear syringe full. Then- pink syringe full. Then- orange syringe full. Then I empty 2 capsules into a little bowl and use the most fantastic pill crusher to crush up another pill. Vicki throws the empty capsules in the trash and then gets 'baby food' from the fridge. I mix the meds up in her Fruit Medley baby food and she takes exactly three bites. She grabs her Capri sun and goes to the snack closet and gets out a granola bar. I hold my breath. Because I just remembered that the nutra grain bars and the nutra grain yogurt bars she likes... I am out of. She was yelling the other day because she couldn't find them. And I forgot them at the store. Crap. I stand back. And she chooses a peanut butter dipps granola bar. Phew. Let breath out. Yay Vicki!!!!! :) She eats her breakfast and does calendar and then asks for Call of the Wildman and pulls out the princess books and cookbooks she likes to look at in the morning onto the couch. I relax for a minute. We did. it. I help Ally get some stuff ready for school. Then when it's time to get in the van, I shut off Call of the Wildman and tell Vicki that it's time for school. I hold my breath again. Hoping that she will stand up from the couch and walk out to the van. It was slow going this am, but she made it. Sigh. Phew.
Then I felt the panic rise a bit again... Oh no. It's really warm outside today. I need to hide her heavier purple coat. Where is her purple sweatshirt? Crap. I can't find it. Now what. Will she get out of the van without a coat? Arggg... Shit.
Vicki gets in the van and puts her seat belt on. Ahhh... I see it, it's on the other side of her seat. Phew.
At school her aide helps her out of the car. 'Vicki. It's warm out today, you don't need to put your sweatshirt on.' Vicki puts her sweatshirt on. And I know, at least I think I know, her aide feels the same way as I do... ok. Vicki can have it her way today. Let's just get inside the school. We will deal with the jacket issue another day. And we will have to figure out how to be ready for that fight. And... oh... no... it will soon be shorts weather. Here comes the panic.
Wow. When I write it out like this, I think... holy moly. We are rigid. Yes we are. I guess. And this is something I struggle with everyday. How rigid is too rigid? What do I fight? What do I let go? How much of it is still PANDAS? How much of it is autism? How much of it is Vicki? How much of it is me?
What do I need to change? Want do I want to change? I set little goals every morning. But the biggest goal during the school year... get all 3 kids to school on time. And, for the most part, I've been successful with that this school year. So even thought this schedule might sound odd to some people, it works right now, this minute, for us. And for that... I give myself and all of my kiddos a pat on the back. It was not easy to get to here.
Yes, I like routines too. Yes, I have favorite ways I like to do things... I guess what I struggle with all of the time is how much do I allow Vicki? What is the difference between me and Vicki? If something changes... if 1 variable is off... will that make or break the morning? Maybe. Maybe not.
Do I have the fight in me? Does Vicki?
Do I give Vicki enough credit for being flexible? I know that I don't. See. She did it this morning. She ate a different granola bar. It didn't break us this am. But it could have. It would have 9 months ago.
And I think that's one of the hardest things for me to get through... I know how bad it was. And I know how bad it could be again. Fear. It's crazy how it can control me sometimes. I know what could happen. I know what did happen. I pray everyday that it doesn't happen again.
Could we have gotten into school if I couldn't find her purple sweatshirt jacket? Maybe. Maybe not. Am I relieved that we found it? Absolutely! Am I looking forward to the day when I don't let her take it into school? No! Am I looking forward to the day that I have to get her a different sweatshirt? (This one is getting mighty snug!) No. I am not.
Do I give Vicki enough credit? I need to. I need to start trusting her more. Not trusting her more... but believing in her more again.
It makes me think of a line from one of Ally and my favorite movies... 'Never let the fear of striking out keep you from playing the game.' No, it's not from the Babe Ruth Story. It's from Cinderella Story. :) I need to remember that quote. And live it. xoxo
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