Apartment pictures (finally!)

Okay, after a 20-minute knock-down, drag-out battle with Blogger, I think I've got the pictures loaded and in order.

Mom came over for a few hours and helped me clean today (read: she scrubs, I whine and pet the cat because everything's out of place while she cleans and I hate the vacuum, which ran for a total of almost an hour. But really, when given one specific job, I can do that. So, one thing at a time). My apartment is kind of the perfect balance between super-clean and lived-in right now, so I thought I'd take some pictures.



This is when you walk in... right in front of you is a closet with a purple curtain on it, and that houses Elsie litterbox and other cat essentials. Since I didn't think you needed to see that, I turned a bit to the right to show you part of my living room. Note that I currently have no curtains and am using my Nemo blanket to keep the sun out of my eyes.... oh, well.

Turn more toward your right and you see my couch and bookshelf.

More to the right and you see my coatrack, the kitchen, sewing machine, and the doors down the hall (closet, linen closet, and bathroom).

There's the little kitchen.

This is the only really interesting part of my bedroom... my bed is just purple and on the floor (box springs and mattress directly on floor). You can see all my cards and pictures and who toward the bottom left there's a lady's face (it was Leigh's in college) that I put a fake mustache on... and of course my dolls. Felicity, Samantha, and Josefina.

And of course Elsie P and I did a mini-photo shoot :) Here's one of the better ones. She turned 13 on March 2nd; doesn't she look fabulous?

20 years too late

I'm still so done, so this will not be eloquent.

Met the team. Like them both, I think. Need more time to really know.

Behavioral support staff uses ABA (kind of the gold standard in autism treatment). Start with another interview (though I'm not sure why, because we just did a 2 1/2 hour interview) on Tuesday evening. Then FBA (functional behavioral analysis... looking at each behavior in terms of the antecedent, behavior, and consequence, to determine the purpose of using different behaviors). Then we get going.

Community inclusion starts hopefully the week after that, just a few hours on a Monday or a Tuesday. Maybe we'll go to the shelter and help out.

I'm stuck in a predicament. I have almost no food in the house. I can eat not very much for the next 24 hours until Mom can take me shopping, or I can attempt to go shopping myself, which takes hours and tears. Still haven't decided. (Update: Went and got a handful of things, so no starving will occur here tonight).

Like I said, not eloquent.

Meltdown Queen

I'm sitting in Panera... my mom is talking to our Korean ESL student and I'm occasionally interjecting (fun fact: Did you know I'm actually a tenor?).

But I'm so done. So, so, so done.

I melt daily. And then there's the panic attacks.

So done.

The supervisor for my Waiver services called me an hour before our meeting today to say that things "got away" from her and that she didn't ever call my Community Inclusion (CI) person. So, we can't meet today, sorry. Can I meet tomorrow? Well, no, I can't. Or Wednesday.

So we'll meet Thursday. Okay, that's qualifies as last minute change in plans, and cue me running into the hallway, bawling.

Then she calls back with the CI on the other line, and I could tell the CI was uh... angry. Not happy. Miffed. Something. What a way to introduce myself to the new staff.

And as she got off the line, I asked the supervisor if we would be on for next Wednesday for Bible study. Oh, actually, she's not available Wednesdays at all. I mean, the ONE thing I wanted to do with CI, and I can't do it.

So now I'm left to "use" my friends, who are kind enough to help me in the crowds and through the panic attacks, but really? It's not their job. And I feel really, really guilty for it.

So done.

Humbled

I've never, ever done this before, and I don't feel right doing it. Basically, I'm slightly desperate, and I can't give up until I'm sure I've tried everything.

So, I'm trying to get a diabetic/autism assistance dog. The dog would be able to detect high and low blood sugars and alert me to them (having had diabetes for 20 years, I no longer feel when my blood sugars gets too low or high very well at all, and it's dangerous), and it would help me out in public, with panic attacks, crossing streets, etc.

I was prepared to have to raise a ton of money for the dog, and still am, but now, I'm stuck before we even get there.

There is literally no one who can train my dog. The organizations that train diabetic alert dogs will not train one for someone who lives in Pittsburgh.

There is a trainer in Cleveland who says she might be able to help me train my own dog (which I am up to doing)....

The kicker? She wants $125/hour just to sit down and talk to her in person about the dog. I've never heard of charging for an interview. But she's kind of my only option. I would have to travel to Cleveland (2 1/2 hours each way?) and back along with paying her for the consultation.

I am prepared to approach organizations about my fundraising and getting family involved when I'm raising money for the actual dog... but I don't feel like I can do that just to raise money to meet with a potential trainer.

So, as humble as it gets... can anyone help me?

One idea for you

Does anyone watch Parenthood? I don't. I only watch Food Network. But, I did see a few clips of the last episode where Max overheard his father shout to his uncle that he has Asperger's. Later, sitting down with his parents, Max asks what Asperger's is, and his parents fumble around trying to explain. His mom cries. Max leaves with not much better of an idea about what he has, other than that he doesn't know anyone else who has it and probably feels very alone.

So now that we all know how not to tell your child about their autism, how do you do it? I'm just going to give you my take on it. You can take it, or leave it, or change it, or whatever you want to do with it, but this is what might have worked when I was younger.

"One of the best things in the world is that everyone is different. There are no two people alike (personally, I would say something more like 'God has created everyone differently,' but do with that what you will). We are all good at different things. Some people are really good with their hands, and they might become artists so that everyone can enjoy their beautiful art. Other people are really good writers, and they write books for everyone else to enjoy. Some people's brains make them really good doctors, and they help others by healing them. Everyone who meets you knows that you're really good at learning about different dinosaurs (random skill), so maybe one day you can be a teacher and teach people about dinosaurs. What are some other things you're good at? (let the child answer)

"Everybody has different things that they need help with, too. (random example) Do you remember when we painted the living room? I needed help from your dad to reach the high spots and put on the new wallpaper. That's okay that I needed help. Sometimes you need extra help knowing what to say to your friends (or staying calm, or sharing, or learning at school.... whatever applies), and that's okay too. We all need help with some things.

"But here's the really cool thing. Some people are a very special kind of different. These people are often really smart. They're really good at one special thing, like you and your dinosaurs. These people also might need some extra help to make friends, talk to other people, (insert things your child needs help with here). Doctors say that people like you, who have these certain strengths and weaknesses, have something called an autism spectrum disorder. There are a few different kinds of autism. The kind you have is called (insert specific diagnosis here, if you want). People can have a little autism or a lot and need a little help or a lot of help with different things.

"It's important that you know that autism is not a disease. In fact, it's not even a bad thing. It just means that your brain works differently than most people's brains. All of us in your family and your friends think that autism is pretty cool, because it helps to make you who you are. Some people with autism have done big, important things, and someday you can do those things too. That's what parents, teachers, and doctors are here for- to help you to be successful.

"Do you have any questions about what autism means or how it affects you?"


Personally, I could have handled this conversation by preschool age. I might have done better if my mom wrote it down and allowed me to read it, then gave me as much time as I needed to process and ask her questions. I remember when my mom had the other Talk with me (haha, I know). I was about 5, in preschool, and she didn't hold anything back. She gave me twenty four hours of time with her to continue to think and ask questions, and she answered every one. Do not rush your child. Allow him to think and process as long as he needs, then make he knows that he can continue to ask you questions for... well, forever.

Again with the "personally," I feel that a child should be informed of his autism by school age. If this conversation isn't age appropriate for a 5-year-old, either let me know and I'll see what I can do, or do what you need to do to make it fit your child, but please do not continue to hold off on letting him know because you don't know what to say or because he hasn't asked questions. If you wait for him to ask, it means he may have been ruminating on the issue for a long time and has finally decided to ask. You don't want him to wonder and worry about why he's different.

Of course, children are totally individuals, and you have to do what's right for your child. There's no way I can say that "age five is it," because each child is different. You know your child best.

Tiny update

I realized last night, when I went to take my evening meds, that I'd never taken the morning ones.

Uh... that's... 150 mg Zoloft (depression), 30 mg Buspar (anxiety), 300 mg lithium (OCD), 60 mg Geodon (meltdown prevention), and the thyroid med.

At least I know I'm not losing my sanity! Back to normal, albeit a tired normal after the day I had yesterday, today.

Trying

Today tried really hard.

I woke up 6 minutes late, with no alarm having been set (yet sure I set it...), so that rubbed me the wrong way. Mom forgot to call me, too, so 6 minutes late I was. I can get ready in 20 and give myself an hour, so this 6 minutes wasn't needed, but it did put a little bump in my routine.

The drive to group was horrendous and stressful, as always, and leaves me crawling by the time I get there.

Then there's The Room. Partial takes place in a small (smaller than my living room in my one-bedroom apartment) room. There are at times 15 people in that room, and we are shoulder to shoulder. And people talk in that room. Typical conversational volume to you, after a short term, is more than my poor ears can handle. So there's that piece of the puzzle...

And then there's The Guy. There's a guy in group who is either on or off. No in between. On is, frankly, diarrhea of the mouth (sorry for the image, there), at a rather loud volume. Off is totally zoned out, even asleep. He spends roughly equal amounts of time in each state. Once he starts talking, he doesn't stop for nary a breath, until someone literally tells him he has to stop. Then sometimes he still tries to keep going. And because My Spot is by the window and he got booted out of his Spot, he now sits right beside me and directs his talking at me. I don't pretend to listen. I know I don't take cues well either, but I can tell if someone is ignoring me.

Between The Room and The Guy, my anxiety was really building today. Oh, and then at some point Leigh mildly snapped at me, because I didn't understand the way she said something and didn't leave her alone when she needed to be left alone. Didn't help things. I kept leaving The Room to sit in the hallway, but out there, people kept walking past, which also made me anxious. When the therapists came by to tell something to the whole group and asked me to go back in, just the thought of going back into The Room sent me into a panic attack. Lovely.

Cats, breathing, talking, therapists, all of this later, I reentered The Room for an hour and finished the day.

Then, I had to call the People on the phone to set up my ride for the next few days. These people are, well, mean. They are cranky. They are rude. They yelled at me. All over setting up a ride through a company. I don't do phones, first of all. I got confused and confused the lady and, as expected, she yelled at me. Start the crying.

And the crying leads to a meltdown. Sadly, perhaps, I'm used to such things while I drive and don't even pull over anymore. I can control it until I get home.

But then I got home and REALLY melted. Full-blown yelling, crying, biting, hitting, icky, horrid meltdown.

I'd love to say that I successfully used DBT skills. I really tried. I did. Or even the cat. That didn't work either. I breathed. Nada.

So, I took a milligram of klonopin and turned all lights and sound off and laid on the couch until I calmed down. I'm not even tired from the klonopin... just breathing normally, finally.

The ideal way to handle myself? Perhaps not. I try not to over-rely on meds. I take klonopin every 2-4 weeks on average, so I don't really think I'm abusing it, but I always feel like I'm taking the easy way out when I take it and zone myself out.

It did, however, give me the ability to use skills and cat and hot bath and whatnot so that I could stay calmed down, so it's not all for naught.

The last place I want to go is to group tomorrow. I don't know if I'll be able to go back into The Room, especially if The Guy is there. I do know that I will go armed with sunglasses (to ward off the evil lights) and purring CD on my mp3 player, which is charging.

Another day, another meltdown. And so we try again.