dianadragonfly: (Default)
I realize I have been using my journal mostly for quick rants or to complain about how I feel.


I will write something intelligent again, I promise.

Today, as I was walking into Walgreens, getting all geared up for Monday, I had a flash back to the first year of full-time job work I had. I was working in the school as an aide and I remembered thinking that it was Thursday, and how glad I was, because then the weekend was coming. And then I thought... "Wow. This is how people live life -- waiting for the weekend, for the summer break, for Thanksgiving. This is how 20 years pass at a job. This is how people get OLD!"

I am doing what I love.
But, it can and does get me down.
I want to be a professional at something, not just work like a professional and get paid like everyone else, which is what I do now. I have a Master's degree (or I'm a few months away). I have higher education out my ass. I get paid poverty wages.

I LOVE the kid I work with.
I LOVE them all, although some really become mine and some don't.
But, I can't go on doing this. It's hard work and it it's impractical with my health. And, well, it pays shit.

I've been thinking of getting my RESNA certification. I can do that on my own (it will take lots of money though)
I will be able to be hired on at schools as an assistive technology consultant. Dude, it would be what I do now, but with MONEY.

I think I need to learn basic programing though. And things like basic circuitry, etc.

I also need to get my writing in serious gear. Truly. I love doing my creative non-fiction but I need to find an outlet for it. Try to sell some stuff. Writing to try to catch the attention of rock stars is one thing, but I need to make money. Not only that, but I need to make a life doing it. I need to see it as my career.


Oct. 21st, 2006 07:09 pm
dianadragonfly: (Default)
So, the kid I worked with shattered the screen on his communication device, which is essentially an ipaq 1940 with software I bought running on it.
A friend gave me another device.
It runs Windows Pocket PC 2002. This is a quote from the software manufacturer's page:

If you are installing this on to
a Pocket PC with an Operating System
older than Windows Mobile 2003, you will probably need to download
and install Microsoft's .Net Compact Framework

So, well, I download compact framework 1.1. No luck. 2.0 won't install because it's made for a pocket pc 2003 operating system. I finally get 2.0 installed by going around the cab. I also get the software installed for the communication device but it won't run.

I asked them for support and they said they can't support older devices.
I understand -- they're busy. But, well, I really think it might be a bug and not a basic incompatibility issue, but I don't enough to tweak it.

I'm so tired of butting my head against a brick wall. I am so tempted to go to Best Buy with a credit card and just get this kid what he needs. It would save so much frustration. Instead I have a few ebay bids in for replacement screens for his device.


Oct. 21st, 2006 11:53 am
dianadragonfly: (Default)
I HATE, well, everything.
My left eye is doing something strange. I find it easier to keep it closed. But my right eye was my lazy eye for years and I don't so so well with it.
It's like the outer field of vision is blurred.

I got an email from a programmer I talk to and he totally blew me off. But I NEED HIS HELP so the kid I work with can have a voice.

Last night, I had to stop in Fort Smith and buy an alternator. Hubby had to change it. Had I gone to Iowa like planned, I would have been stranded somewhere on 71 when it went out.

I'm feeling sort of helpless and inadequate. Like I bust my ass but it's still not enough.

I need to remind myself that it is the PMS talking.
dianadragonfly: (Default)
The boy I worked with pulled my hair. Twice. Hard. He's never done that before. He's done it to others though.

The school left a message Friday saying he was upset and pulled hair. He even ran off from school and they called police. He has no concept of cars, traffic, etc. and can't talk, so him running out of school is serious.

I think something's going on. Medication probably. I'm also thinking stomach issues. He had a couple of really nasty accidents with his bowels the last few days. We gave him a tylenol and started him on stomach medicine.

I get so ANGRY when he's aggressive with me. I know he's hurting, I know, that even when he pulls my hair, he is doing it with a restraint that's rare in autism. He doesn't want to hurt me. He just wants to let me know something. But I just get pissed off. I can't help it. My first thought is "He can't get away with this shit" even if I KNOW it's being caused by pain. I guess it's good that I get angry because I walk away, which is the best way to deal with attention seeking behavior.

My other temptation is to bust his ass. That's a mom privilege. She's said I can do that if needed, but I don't want to get into that. Not in this situation.

However, I did smack his butt once. We were crossing the parking lot and he started to stop and throw a tantrum. He acted like he was going to sit down. There was a car coming. I smacked his ass and jerked him up from the ground without thinking. I told his mom later, but really, that was a no-brainer. You can't do a sit-down strike in a parking lot. You get run over. I feel no guilt about that. None whatsoever.

He's such a gentle boy though. 5' 8" -- WAY taller than me. 5 seconds after he yanked my hair this morning, he comes up, pats my cheeks, hugs me, gives me a kiss.
Poor baby.
You have to have so much skill and body awareness to figure out what's making you sick or what's making you hurt. You have to be able to pinpoint the body part that hurts, have to recognize that the sensation is pain and not, say, hunger, for a stomach ache. You have to figure out that's not right and then communicate it to someone. It's not as simple as not being able to speak. And if he has something systemic -- allergies, general yuckiness, etc. then it's impossible. You give a tylenol and hope that hits it.

His grandma, who has fibromyalgia, says that he has an elevated blood count that is indicative of some sort of inflammatory issue.

God, if he has some autoimmune/pain thing on top of autism, man...

My scalp hurts.
dianadragonfly: (Default)
My "boss", the mom of the boy I work for and probably my best friend, drank a whole 5th of Jack Daniels tonight.

I stayed late -- both because she was fun and also because I was worried about her. I mean, her ex called right out of the blue. That would freak anyone out, but, well.... she does this probably once a week.

There is no doubt that she is an AMAZING mom and is never drinking while her kids are awake and need her.

But I am afraid that she is becoming an alcoholic.

Again, I find myself wanting to intervene, wanting to rescue, wanting to save.

It's not my job.

My job, and what I'm good at, is to love. That sounds corny, but I think of the people I've known who I want to save. [livejournal.com profile] paperflowers, I adore you but that picture of you on the Golden Gate Bridge scares the fuck out of me. The moments I'm most uncomfortable is when I think I should be in "help" mode, but instead, I want to be in "friend" mode. Instead of talking about how scary that picture is, I want to hush that side of my brain up and decide that I want to be there shooting the pictures of you and laughing at the counseling sign and the look on the biker's face. That's exactly what I love about being around you, how you can make that part of my brain shut up and instead I can appreciate BEING there -- even if it's totally completely fucked up, like posing for bridge jumping.

Is it wrong to slightly enjoy these nights that my friend drinks? It's companionship, even though she's drunk. Maybe I like it because she needs me -- I don't know. But really, doing AB Blaster workout tapes while she drinks whiskey is FUN. I love her crazy spirit and I love having a night of hanging out. It might be the only time we get together because, well, I watch her kids, right? So if she has time off of being a mommy, it's because I'm there with her kids. So we don't get to go out together at all.

I worry that by loving, by enjoying the ride that the wonderful, crazy, fucked-up, awesome people in my life take me on, that I'm somehow complicit in something bad. That by not saying "no -- don't drink" or "no, don't do X Y or Z that is bad for you" that it's somehow the same as saying "I don't value your life enough to be concerned."

When it comes down to it, I feel like I HAVE to judge. Which surprises me because I never thought of myself as judgmental. Really, do I expect the people I love to say, "Well, if that's how you feel, I won't do _______. I had no idea it was bad for me."? Nope. I will just alienate.

And really, when it comes down to it, what the hell do I know about any of it anyway?

God, I'm tired.
Tomorrow a.m. will be hectic. I have to go back there in 6 hours. And I'm tired as hell.

God I hope I haven't given her this URL. I don't think I have.
dianadragonfly: (Default)
What a shitty day. Literally.

Sometimes, toilet training fails when you work with people with disabilities. Nothing says love like a poop smear.

I got some bodily fluid on my mindcrime shirt. *wails*

All in a day's work, I guess, but man... *goes to shower*
dianadragonfly: (Default)
I came home Friday determined to quit one job. But I think, instead, I have things worked out so I can be happier and have weekends free.
My schedule as it stood last week - MWF 5:30-8 pm -- 5 year old. Not too far away, but takes about 20 minutes to drive at that time a day.
1 - 8 pm Thursdays - 12 year old (That works well. I did get him off to school 4 days a week and all the running almost killed me!)
Every other Saturday 10-5 20 year old -- aprox 30 miles away.

I had made up my mind to quit the 20 year old. It's too far away, it sucks up too much of my weekend, and 9 times out of ten, one of my THREE friggin employers has a training on Saturday, so I have to go to hers on Sunday, or that's all my Saturdays in a row.

Instead, I am going to work with her from 2 pm to 5 on every Friday. My total hours haven't increased -- 12 a month opposed to 14. My time in the car, which is killing me!, has increased slightly, but still, the 5 year old is on the way between her house and mine. So, that's half the mileage I would have done anyway. (I only get paid if the client is in the car with me).

I might cut Fridays with the 5 year old and instead do a long Saturday night once a month, so his parents can go out and have fun. Yay for being paid while kiddos sleep! Even better would be to cut Mondays. :) That way I don't miss out on the benefit of hitting his house on the way home.

I had philosophical objections to my job on the weekends with the 20 year old. I was a paid friend -- recreation and leisure was what I was listed as. What that means is that we hang out -- bowling, shopping, etc. Whatever she wants to do. I prompt her on banking and check writing skills, but really, that's about it. None of us have a friend so awesome that they would drop everything every weekend to cater to your every need. What I keep trying to make her do, and she's scared to do it, is to use that weekend time to go out with her other friends. I've taken her out to see her boyfriend once, but that's it. She has other friends -- she's a wonderful girl. She needs to learn how to maintain those friendships and she won't do it as long as there is a Saturday paid friend provided to her.

So, yeah, I still might do some Saturdays, but I don't feel as locked in as I did. In this position, I can really work on building independence, not making her dependent. I plan to start asking the para transit bus to pick her up and meet me in town so she gets used to riding it.

AND, my weekends are free! My weekends are free!
dianadragonfly: (Default)
Doing well...busy, tired, on predinsone for my feet so I expect to have a fat face in like 5 seconds.
Got hair cut short again.
Trying to wear make-up regularly for the first time since 1991. I'm just tired of looking so pale and tired. I also, just, well, I don't know how to describe it but I want to convince myself that it's okay that I want to look nice. It's okay to want things for myself -- not to look in the mirror and groan at my frizzy hair, but to say "It's okay to invest the $6.00 in hair products and the 5 minutes every morning to do something about this. No, it's not the most important thing in my life, but I am important, and if I like it, well, it's worth it."

Today was the most wasted day of my life. Sat in a room for 8 hours, watching a badly recorded tape of an 8 hour training. One lady was rude and insulting and wouldn't shut the hell up. I wanted to kill her. I just got so sensory overloaded, between the small room, the big ass dose of prendisone, the provigil, the caffinne that I kept drinking to stay awake. I was tired and jittery and ready to throw a full out, autistic, overstimulated TANTRUM!!!


Then 2 hours at the Olive Garden. But it was heavenly.
Yes, we have gotten our loan checks for the semester!

And I'm making a plan of attack for tomorrow. That's my goal right now.
dianadragonfly: (Default)
I so don't want to end on that last post. It's just frustrating. I have one little sister who talks and talks and doesn't let me into the conversation. I don't need another.

Anyway...happy things...
I organized my closet.

dianadragonfly: (Default)
I remember the end of Marvin's room. Diane Keaton's character has spent her life taking care of her dad, who is bedridden, and a crazy great aunt. She has also just gotten the news that her own cancer is incurable, despite having her sister and nephews typed for bone marrow transplants. The two sisters are sitting in the room of the father, I think, amusing him with a mirror reflecting light on the walls. (I think -- it's been a long time). Diane Keaton's character says "I am so lucky to have had so much love in my life." The sister, wanting to be reassuring, says something like "Oh yes, Dad and Aunt whoever love you very much." It's obvious that the dad isn't even sure she's around.

Diane Keaton's character says," No, it's not that they've loved me. It's that I love them."

At the time, I thought that was sappy.

But I think of that a lot. For those of us who spend our lives loving people who might or might not be able to love us back, or they can't give us any of the "perks" that you're supposed to get from a relationship, who have that emotional investment and aren't able to ever have that translate into any sort of real-world ability to have any input, who have to just bite our lip and bear it when the parents decide a group home is best, or when we have to move on, or when a kid gets transfered, or when a parent or school or guardian or teacher or administrator makes a decision we know is wrong... we just have to love and let go. It's not like 20 years from now, a kid is going to give a speech and say "I remember that Miss Lesley helped me do this..." My kids, for the most part, don't speak. And I get embarrassed when other people note things, as if that the child with autism, or cerebral palsy, or Lanudu-Klneffner, or Angelman Syndrome, or Down's Syndrome, or whatever is so different, is so outside the human race that to love and to teach is somehow only an extraordinary achievement that only someone like me can achieve.

But I get my heart broken over and over -- sometimes through my failings, sometimes through the system. I go visit Kayla and my heart just wants to explode on the drive home. I want to be there so badly, I want to set things up so that she's loved and cared for in the way she deserves. I want everything for all of them and know that I can't do it. So all I can do is love -- even if that means not letting my 12 year old hug me all the time because it's not appropriate and all I want to do it hug him. Let go of my "wild-child" who was too violent for me to take care of her, though I think about her everyday. Go visit my 5-year-old and try to remember that I'm not going to be part of his life forever, so I need to train everyone around him on how to use his communication system. Remember how the 7 year old "got it" -- learned how to use his augmentative system to ask for things, and then moved and I'll never see him again. NOT let my 20 year old get so attached -- she gets wrapped up in her caregivers and that scares them off. She needs friends -- not paid friends. She has friends. Her caregivers need to respect that, and not bask in the affection and praise she so freely offers, and instead take her to visit her friends.

Anyway, I think of [livejournal.com profile] paperflowers a lot. She knows this too and it also turns around and kicks her in the teeth all the time. The people she loves are at the end of their lives. They forget who she is, forget who they are, stop talking, have strokes, die. That's a kind of hard love that most people don't have. And it leaves her with a lot of people that have left her, and it leaves her alone.

There might be something broken about this, something that makes us seek out these sort of doomed relationships. But I don't think so. I think without my juvenile delinquents, my Kayla, my kids who can't talk but are never silent, I would be a worse person. I wouldn't understand that everything isn't always fair in love. The hubby is never going to be great with money and that's how it is. I either let myself feel cheated every month, or I accept that, and do the bills anyway. He's never going to be great at giving comfort on demand. I know that now, and I know that doesn't mean he doesn't love me. I'm not a doormat, by any means, and I get pissed when it's my bank account bouncing all the time.

I think this is sounding too emotional and flowery, and that's not what I meant. I think, without my kids, I wouldn't know what it means to just love -- expect nothing in return.

People say that kids with disabilities are the example of unconditional love, and I used to laugh. Love for Mary was totally conditional -- if you let her eat, she loved you and hugged you. If you said no, or made her mad, she hit or bit and screamed. It was the definition of conditional.

But I realized that they mean to love a kid like Mary is to know how it feels to love unconditionally, even as you're so angry you think you understand child abuse now, even as you're bleeding from a head butt. That's what I've learned from all this.
dianadragonfly: (Default)
I can't take it -- the mom of my 12 year old is thinking of sending him to a residential school.

It's down to that -- it's down to no choices.  Community integration supports aren't enough.  They don't cover well enough when staff is sick, or quits, or when you need more hours, or when the school sucks, or when the kid has a toothache.

I can't blame her.  Not as much as I blamed the parents of the other kids, who were simply DONE and didn't care.
She's single, a little older than me, and has been trying so hard for so long.  Cancer, twice, one husband and one fiance leaving her, saying it's her son's fault.  Her daughter upset and stressed all the time. 

I can't work there 100%.
I can't singlehandedly save them all.
I want my life too.

But I will miss him so much. We have no backups when community support fails -- maybe because we have no community anymore.

dianadragonfly: (Default)
I knew they'd come to good use someday.

I just got done writing not one, but two stories!  With pictures even.  They are social stories for my boy with autism.  Here they are, in full:
Story one: 
When I have to pee, I go to the bathroom and pee in the toilet.  **photo of a toilet with yellow water, with a circle around it and an arrow pointing to it**
I am careful not to pee on the rug or on the floor.  **photo of a rug with a big X over it and then a photo of a bathroom, with a circle around the toilet and an arrow, and a big red X on the floor**
I don't pee in my pants or underwear  **photo of boys' underwear with a big red X and photo of pants with a big red X**
I don't pee on my pillows or in my bed. **photos of a bed and pillows with Xs"
I don't pee in the bathtub  **photo of a bathtub with an X"

The second story is pretty much the same thing, but a different bodily function.  Photo software for kids with disabilities has clip art of turds floating in toilets, if you ever need to know that. 

And they say I'm wasting my writing skills by spending so much time at my jobs. 


Dec. 9th, 2005 11:16 am
dianadragonfly: (Default)
Only in the world I live in would it not be a big deal to hear someone complain about wearing glasses because her teenage son ate the last pair of contacts.

It took me an hour to even realize that was something out of the ordinary enough to laugh at.
dianadragonfly: (Default)
Productive bridezilla me spent about 6 hours tearing up the town, buying shit left and right.
Then I came back and spent a few hours working on my kid's online pecs. PECS is how he communicates -- It's the picture exchange system. He carries around a book with hundreds of little pictures that I've cut out, laminated, and then velcroed. The problem is, those things get lost so easily. I come home and I find a thousand of them stuck to my shoes.

90% of his pictures are on one of two programs that everyone around him has access too. But, some things he does better with real pictures for. For instance, his house, his favortie foods that we can't find on the photo CD, etc. But that's such a pain. I take pictures for the OT and she loses one. How does she find me to get a copy? So, I've moved the unique pics that I have online. It's
I know the mom doesn't care, so I'm not worried about positing this publicly. His school images are password protected, though, because other kids are on there.

Isn't he handsome?
dianadragonfly: (Default)
An hour and half on my cell phone to the mom of the girl that I quit.
She alternately ranted, raved, and cried.

Do you see why I feel pressure here?
I told my counselor (not that I ever actually see my counselor, but anyway...) that I find it hard to set limits with this family. He asked why. I was thinking that as I watched all the employees turn the lights off in Sam's Club, since I missed going in there because I was listening to her cry on the phone. I can tell you why. They make it so personal. It's like breaking up. And I haven't even told the girl.

Plus, there's a selfishness -- look what you, you selfish person, are doing to US.
I get tired of being told that I'm part of a systenm that's hurting them. I am trying, but I can't do it all...


I promised I do alot and try to stay in the girl's life.

Now I might be on for just as much work, but with no pay.
I love this girl, but the family can't lean on me so much.
dianadragonfly: (Default)
Oh I like being back!
A day or two off and look at me. Spam spam spam. Here and on QR.com.

I am making two photo collections on my computer -- yo uknow, the homemade DVD with pictures, video clips, and music and/or narration in the background. One is for my mom's England trip and the other is for the respite program (to say -- give us money!!) I'm trying to think of respite songs. I have "Wonder" by Natalie Merchant because that just captures the joy of it, I think.

I need a QR song.

It can't sound too metal (conservative donors, etc) and I think Take Hold of the Flame might be out because of that. Best I can, I am worried that people will get stuck on the intro and not catch the rest of it ("but none of our kids had a gun accident") .

Falling Behind?
Some People Fly?

There is a Trisha Yearwood song that was on Extreme Home Makeover that might be good. Most of the kids like country.

Any suggestions? I want joyful, not too sentimental. Because it's always a joyful experience. Nothing like that terrible "Don't Laugh at me" song that was on the radio a few years ago. Maybe some Garth? All I know is old Garth. Didn't "Standing outside the fire" have a video about the special olympics?
dianadragonfly: (Default)
I've never been fired before.

I left a long email to the parents of my 20 year old saying that I was going to phase myself out of her plan because I couldn't keep up with the paper requirements.  Really.  they chose to switch agencies.  I took on a lot of stress for them, but I was sooo tired.  It was paperwork day for all the offices today and two kept calling and hounding, even though I explained that I would be late because of my schedule.

I called my team leader, who didn't know she was on my team.  I explained my situation and how neat this girl is...

And then, my boss called and said for licsensing purposes, I need 24 hours of DSP trining by Novemer.  Three days, 8 hours a day, week days.  I can't do that.  I have a full time job.  I explained that I only planned to work until; December.  She said she didn't know how much longer I could work without the training.

I think I'm fired.
That decision was made easy.  Very easy.  Now the family won't be so hard on me.  Besides, I'm checking in with special olympics unified teams to get this girl on a team.  She needs friends.  Not staff.  Not paid friends.  

Yes, I am her friend.  But waiver at its worst is an institution of one -- a person and their staff person in an isolated group.  Just because we're in the mall together or the library together doesn't mean that she's having a community life.  What i should be doing is helping her make friends, not fulfilling that need for her.

I can come get her and we can go out to eat every now and then.

I want to get her on the bowling team, because she'd be great!
She has respite from Friday to Monday every other week.  She'll be fine. 

She won't understand that, though.
Poor girl.
dianadragonfly: (Default)
So, it's the time of the year where shit hits the fan.
In my classes,  I got tired of re-explaining myself so I signed EVERYONE up for presentation days, whether they were in class or not, then sent an email out explaining the schedule.

This was on Friday.
In the last hour, two people have had a friend die and one has broken his ankle.  All in the night before a presenation was due.

Im expecting something of them and they're FREAKING!

It's not that I don't believe the two who had a friend die.  It's just, well, the guy who had the "broken ankle" told me to my face he didn't care about the class or his writing.  The other four emails were people that missed BOTH classtimes where I explained the assignment and somehow them not knowing what to do is my fault.

Grrrr.....   I'm always pissed for class after respite.  Jesus Christ, I watched a kid that has never walked a day in his life crawl up the ladder to the slide because we were cheering him on. 

Deal, crybabies.  DEAL!

I so don't want to teach next semester.
dianadragonfly: (Default)
Just watched Extreme Home makeover.
My friend wasn't on there, but I saw a few kids I knew. 
I wish the show focused less on the actors (oops design team) and more on the people, but that's how they get ratings, I think.

I *heart* Ty.

then I watched my respite video.  12 kids, fishing away.  Three in wheelchairs, some speaking, some not.  A fair amount of our kids have fairly invisible disabilities -- you wouldn't know they had m.r. unless you worked with them in school, or had a long enough conversation to realize certain social skills are different -- long conversations about nothing, for instance.  Power Rangers.  Personal questions about husbands and kids and grandkids.  Repetitive questions.  Repeating over and over how good the food was. 

One of the boys who is pretty high for our group, but low for his peer group is very into teenage boyness.  He talks about girls and fast cars and is obsessed with video games.  He rushes to take things away from the women -- all women.  Once again, I'm reminded that if you want to see the worst of our culture, see how it filters down to people with disabilities.  Another girl is obsessed with family relationships and marriage.  She's in her early 20s.  She is starting to catch on that she's not encouraged to get married or have kids and that is devastating. 

But man, I love that video.  What I love about it is all the cheering in the background.  Not a second goes by that we aren't cheering for some kid "catching" a fish. (i.e. adult gets one hooked, kid reels it in, adult takes it off and kids poses with it. )

I am going to send it to extreme home make over.  That's my next goal.

It was a hard respite.  Not a MOMENT of downtime.  not a second.  I hurt all over. 

But it was good.
dianadragonfly: (Default)
I don't like it when I'm not on here much. It means that I'm not writing -- anything. This is usually a catalyst for other writings. When I stop thinking in this sort of narrative voice is when I get the most isolated from myself and what I want.

Anyway...since I am tired and worn out, I won't type long.

I do present the ever-lengthining list of things I have fixed with duct tape and/or medical tape at respite:

1. affixed too small diapers
2. fixed a broken seatbelt grommet on a wheel chair
3. fixed a client's bra
4. made numerous privacy curtains out of sheets
5. clsed broken battery doors on flashlights
6. shoes
7. cooking utensils
8. covered a shower head with a washcloth and tape to help with a shower and NOT get myself soaked (water drips out instead of spraying everywhere
9 electronic toy
10 air mattress

that's offhand. Most of those were this weekend too

We had a young man that required pretty much 100% care. I helped with almost every transfer and did a few on my own. I'm getting more comfortable with this. ANd better at it.

It helps to be in a low pressure environment where I can say "Okay, I'm going to lift him this time, but will you stand here just in case I need help?"

It's funny. I've dealt with all sorts of disabilities, but I haven't done a lot of wheelchair transfers.

We have one boy that didn't come this time. He also needs about 100% assist, but he is verbal and pretty much all there mentally. He only lets certain people work with him because he's too scared. I think, after this weekend and all the work I did with this new kiddo, I'll be able to help this other guy more.



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