Halfway to 30. Ha, ha... somedays I wish I could say that's my age again! Do you ever have those days when you just want to stomp your feet and pump your fists and say, 'I don't wanna be an adult today, I don't wanna!! ? !!' :P Responsibility go away. tick, tick, tick.... (that's my onomatopoeia for the clock noise. That's a lot of vowels together. I never noticed that before... anyway.... ) tick, tick, tick...Nope, responsibility, still here. Drats. :) As soon as I think I can dig my way out of crap, more just gets flung my way. Here I go with the potty talk again... I've been very quiet the last few days. It's been a great few days off... But, this time, we go from one extreme to the other. That's the way a lot of things are with Vicki. Some of her behaviors are like a big pendulum swaying back and forth, going from one extreme to the other. That's strange. I just made 2 references to clock stuff... Hmmm... Maybe because I am sleepy again.
Anyway, I also think of autism as being on one of the wildest roller coaster rides of your life. A new behavior might start out slow, chugging up the hill, getting more intense as you reach the top... And then you stop. And you hold your breath. And you wonder how bad the drop is going to be. You close your eyes. You scream. It's fast and furious. And then it's done. And you ride it again and again. You get thrown for loops along the way, and get jostled and shaken. But you hold on. You hold on for dear life. And you know when they take your picture on the ride... sometimes, even though you are scared sh*t less, there might be a hint of a smile lurking behind that face of terror. Because you know, that deep down you wouldn't trade those moments, because they make you stronger. And if you can face your fears, then you can do anything. Corny metaphor, I know. Or is it a simile? I think similes use like or as. Now that's 2 literature references. Moving on.... :) Geeze, I'm really wasting your time now. (3). :P
Back to potty issues. Last week, she was going too much at night and we had a whole host of those problems. This week, she won't go at all. :( Well, not at all, but not much... For instance, today she got up and peed at 8:30 this morning. She didn't go again until 7:00 tonight. I wish I knew why. She's still drinking her normal amount. So I know she has to pee. But she is very adament when we ask her if she has to go, or when she sees the potty symbol on her schedule. She responds, "I don't have to go". Now, she's been doing really well with staying dry, so I tend to take her at face value when she says she doesn't have to go. But I keep asking. And I keep watching for signs. Sometimes she'll put a pillow or a book between her legs. Sometimes she'll do a little potty dance. Does it hurt her? Does it burn? Does she just want to control something herself and not do something in response to a question we ask, or a picture on her schedule? I wish she could tell me why she doesn't want to pee. It seems very aversive to her the last few days. Like I said, we'll see something from Vicki one week, and then the next week she's okay, and then it's back to it. So, we've had this before. She cycles a lot. And I've taken her to the doctor before for it, thinking there might be an infection or something and everything has always come back negative. I remember the first time I ever had to have her pee in a cup. It took 2.5 hours. That was intense. Boy did we celebrate when we got it that day! Anyway, I just don't understand the not peeing thing. Even with my other kids it's like pulling teeth to make sure they 'try to go' before bed, or when we are going in the car. Maybe it's just because I'm getting older, and those kids sitting on my bladder for 36, 38, and 37 weeks made it not too happy. But I jump at the chance to pee. And as soon as my feet hit the floor in the morning, I have to pee. I am amazed that sometimes I see my kids not pee when they get up, for 2-3 hours... how is that even possible?
So, I'm changing subjects now. I wanted to share some of my thoughts about sensory processing disorders. Have you ever read 'The Out-of-Synch Child' by Carol Kranowitz? I read it a long time ago, and I had the opportunity to attend one of her lectures. I've always found sensory issues confusing but interesting. Sometimes Vicki is hypersensitive, sometimes Vicki is hypo sensitive and sometimes Vicki is both at the same time. Vicki loves deep pressure. She loves to wrap up in blankets. She loves to give hugs. She doesn't understand personal space boundaries. She loves all things gooey, squishy, and mushy. She loves play-doh, painting with shaving cream, playing in the mud, and playing in the sand. She love swinging on a swing. She loves bouncing on a ball. I still freak out with little toy pieces or coins or, just about anything she could put in her mouth. Because she's unpredictable. She'll play in the mulch and then take a handful and put it in her mouth. And you know by now, my reflexes could be a little faster.... So when she reached down one day, I thought she was going to draw in the dirt, and she picked up a fistful and popped it in her mouth. After I swept a bunch of it out of her mouth, I just kept repeating to myself, 'God made dirt and dirt don't hurt.' :) I try not to wear long sleeves on her much in the winter, because she chews on the cuffs. And have you ever touched or smelled chewed on clothes? It's not good. She chews on her hair sometimes. She tries to lick her feet. She smells Ally's hair all of the time. When she goes to try a new food or texture, she'll put it up to her nose to smell and then put her tongue on it. :) When she's cooking with me, I have to watch her closely so she doesn't try to lick everything. I get nervous when she's stirring eggs. A future post will touch on some visual sensory things...
But one of Vicki's biggest sensory issues is with her ears. Like I mentioned in yesterday's post, Vicki's been tested by an audiologist repeatedly and has always passed the evoked potential tests. She did have lots of ear infections as a toddler, we had tubes put in her ears when she was 3 or 4 years old. She holds her ears a lot. A lot. And it's at odd times. She could be fine in Chuck E Cheese but then hold her ears when we are talking in the room. And then in the next instant turn on 3 of those little bouncy animals that sing songs when you push their hand or foot... all at the same time. I want to hold my ears for that. And this is an odd one, she holds her ears when she pees. So I always know when she is sitting on the potty and she starts to pee- she'll hold her ears, she plugs them up and sometimes even hums to herself the whole time she is peeing. I find that fascinating. What is it that she doesn't like about that sound? Does it hurt her ears? What does it sound like to her? When she was younger we took her to 'The Spectrum Center' in Bethesda for auditory training. Their whole concept was based on the work of Albert Tomatis, hence the Tomatis Listening programs. Again, I'm no expert, but from what I understand, the Tomatis program takes the child through different stages of sound production, by filtering out sound frequencies below a certain hertz which then takes the child back to what they 'heard' in utero. I remember I had to read a book and they recorded it and took some of the frequencies out so that what you heard wasn't even recognizable as my voice anymore, it sounded like crickets. It was kind of neat. Did it work? I don't know. We did it for quite a while and paid a lot of money, so, obviously, we thought it was doing something for her. And we bought the specialized headphones and Mozart tapes that were filtered for home use. We'll still do a 2 week session at home when we think she's holding her ears more than usual. Sometimes it seems to decrease the ear holding afterwards, other times it doesn't. But I guess there's no harm to listen to and relax to a little Mozart now and then. :)
I've always wondered what Vicki actually hears... can she block out all of the background noises that you have to weave your way through so as to not get distracted by them so you can hear what's 'important'? And the last few times we've gone swimming she won't let go of her ears in the water. Makes it kind of hard to use her arms for swimming. I need to look into options for her... I get nervous at the thought of ear plugs, I'm not ever sure I could get them in her ears, let alone keep them in and not have her put them in her mouth. One thing at a time. That's the problem. I want to do everything I can do to help Vicki --- now, or yesterday.... One final comment about her ears. And this is strange. Vicki doesn't ever seem to have wax in her ears. Where is it? Maybe her share was given to Joey. :) In a way, it's good she doesn't have wax build up, it would be next to impossible to clean them out for her. She really doesn't like to have her ears touched. But still, where is her wax? And I wonder if the amount of wax production has anything to do with anything....
I think I launched into this discussion because I didn't want to touch on her behaviors today. But I guess I'll mention it briefly. She started off great in dance class... was participating, doing her saches.. that doesn't look right, say it again, with a french accent. :P Anyway, all of a sudden, she shut down. And I wish I knew what causes that switch to flip. Did she just want a break? Was she uncomfortable, because she really did have to pee but wouldn't? I hate that all I ever have is questions... and I hate that there are times when I look in Vicki's face when she's melting down, and I see fear. She contorts her face in such a way that I have to look away. Because I hate that I know there is a reason. But I don't know the reason. And I don't know what to offer her. She already has my heart. And then adrenaline kicks in. And it's all I can do to keep myself even and not let Vicki see that I am about to fall apart too.... So, that's today. Well, yesterday now. Based on the time... (4)
Time keeps on slippin', slippin', slippin'
Into the future
Time keeps on slippin', slippin', slippin'
Into the future
I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
No comments:
Post a Comment