Celest's Playlist

Celest has decided that she wants to use my headphones and laptop to listen to music on YouTube. She's had fun with it. I, however, had to figure out what she was talking about some of the time. Here's her list for today so far:

• Muse Butterflies and Hurricanes
• Muse Take a Bow
• The Beatles The Continuing Tale of Bungalow Bill (or whatever the proper title is)
• "Moby Honey Play" as she called it; the song Honey from Moby's album Play
• Muse Razor Blades
• oble-doble-doble-oble (and some other syllables that sound roughly like that)- she wanted Ob-la-di  Ob-la-da by the Beatles- This one was my favorite to figure out.
• Muse "Museum"- actually Muscle Museum
• and "coming unplugged", which I never did figure out for her. Nothing that showed up on YouTube was what she was looking for. 

She's feeling a bit musical today, I suppose. I brought my bike and magnetic trainer set up in the house so they could get some exercise, and she's been plucking the brake line and telling me it's a guitar string. 

Bah! And Other Things.

I haven't posted on this blog since July. Which certainly isn't to say that my life hasn't been affected by autism since then. I have just had no will to write about it.

It's been a long ass year, and the girls are dealing with it pretty well. We moved on September 6th, and they've dealt with it very well. They don't seem to miss the old place (we'd been there since December 2002 until September 2011). In fact, they seem to really like the new place.

However, I'm not dealing with all of the changes so well. I don't like seeing my kids growing up (as weird as that may sound). I don't like puberty. I don't like the fact that we will have to go to another school next year because the district pretty much told me they have nothing appropriate for the girls past the seventh grade.

I don't like not knowing what the future holds. I've been dealing with the fact that I won't be able to keep and protect the girls forever. If for no other reason than the fact that I will die some day.

But, also because I can't keep a "regular" full time job with them. I can't afford much of anything since the move. I haven't lived on my own since 2002. Within two months of moving I've lost my main source of income. I'm struggling to figure things out at this point, but I have come to the conclusion that I have to be able to make it, so I will.

The girls are for the most part oblivious to my depression at dealing with such things (or so they let on). That is a good thing. I like that they don't have to worry about this part of life.

I've really connected with some other parents of kids with autism (or as I call them, autism parents) online. I met a mom of a newly diagnosed child, and it feels good to be able to help her out with information when I can. Still, it feels like a very lonely and isolated world of autism that the girls and I contend with. Or rather, that I contend with, because most of the time they are pretty happy.

I Was Never Really a Fan to Begin With, But Now I Have More Reason Not to Like Lady Gaga

Aside from the fact that she took her name from the Queen song "Radio Gaga" because her manager compared her vocal skills to Freddie Mercury's (which is a joke in and of itself!), I've never thought much of Lady Gaga. She comes off as a pretentious, pseudo-intellectual, gay panderer. By that I mean I think she tries to be super "gay friendly" to get that market share, not because she actually gives a shit about the problems gay people go through.

However, in a recent interview she showed her open-minded acceptance of others particularly well. While bashing people who accused her song "Born This Way" of being a rip off of Madonna's "Express Yourself", she said this: "No. Listen to me. Why the [expletive]...? I'm a songwriter. I've written loads of music. Why would I try to put out a song and think I'm getting one over on everybody? That's retarded."

Yes, Mrs. Champion of Individuality, open minded hero of the downtrodden and sexually oppressed. Using "that's retarded" is a very sophisticated, intellectual response to criticism. And rather artsy too. Just like her high brow, cutting edge, "deep" lyrics. Some examples: "Cause I'm bluffin' with my muffin", "Cherry, cherry, boom, boom, ga, ga", and "Let's have some fun, this beat is sick, I wanna take a ride on your disco stick".

I can't claim to fully comprehend the depth of her artistic craft. But I can say that resorting to name calling, pejorative usage, and slandering people with intellectual disabilities isn't exactly taking the high road in an argument. Sounds a bit defensive to me, in fact. Just my thoughts.

Summer Time

We've yet to do anything too exciting this summer. I'm trying to think of things, and I've come up with a few local trips we can do. Nothing too exciting.

We begin our extended school year tutoring tomorrow, so maybe we'll come up with some fun yet structured things to do around the house on Mondays and Tuesdays. : )

The girls turn 13 in nine days!!! I've yet to get them anything for their birthday, but they don't know that yet. Geez, I feel old.

The School Year is Almost Over

I'm back to that slightly evil feeling I get when I wish the school year wasn't over. It's not that I don't love my kids and enjoy being around them. It's just that they get bored easily and I have trouble entertaining them. Then things can get ugly.

For instance, when bored, their hobbies may include:

• throwing temper tantrums for no apparent reason
• going to the bathroom every 5-20 minutes and getting naked/making a mess
• fighting over the TV remote, ipod, and/or my cell phone
• mindlessly eating snacks
• sneaking out of the room I'm in to get into something they shouldn't be

I work from home the majority of the time, so this can make my work situation a smidge less than optimal. Also, I feel guilty for working instead of doing things with them. Then when I'm doing things with them I'm thinking, "I need to get to work!"

Anyway, whether or not I'm ready, schools out in roughly two weeks.

Autism Awareness Month

I've gotten pretty far out of the loop on advocating, attending rallies, and other autism activities. I feel kind of guilty about that. Then I realize that I do the best I can for my daughters every day, and that is helping out with autism. I try to let them experience life, even though it is rough with their abilities sometimes.

I always feel like I'm not doing enough. I wish I could handle them 100% by myself, but I know I can't. I need help, but at the same time I resent needing help. But the mature side of me knows that what is best for the girls is accepting help when it is needed.

Each parent and caregiver is different, so I can't claim to speak for them all, but here are some things I'd appreciate others knowing about autism:

• Not all people with autism have special skills or are like Rain Man. Less than 1% are considered autistic savants. And no, my kids aren't in that tiny group. 
• Kids with autism may appear "bratty" in behavior but most likely they are having a meltdown that they can't control. Staring at them will only embarrass/enrage their caregivers and companions.
• Offering to help is fine. Offering holier-than-thou or sarcastic commentary/advice is not fine. 
• Asking questions is okay, as long as my kids aren't running amok or having a meltdown. I am very open and love to talk about autism with people who are genuinely interested. Just know that if my kids are present I'll probably be very busy keeping them on task.

I hope I can get more involved in the autism community as my daughters get older, but they will always need cared for so that may have to stay a lower priority for me for some time. I encourage and appreciate what others can do to spread awareness and stop prejudice. Thanks for your help if you've done your part.

Squeaky! And Other Stuff...

Celest has decided to start squeaking throughout the day. I'm not sure why this is exactly, other than I think she likes the feel of making the sound and the sound itself. She just keeps making a squeaky noise. I don't know exactly how to describe it.

Aside from this, the girls have both decided to sample music in very tiny sections. Generally the first 1-10 seconds of a song. I almost lost my mind hearing the first three seconds of ZZ Top's "Cheap Sunglasses" last night. I can still say I've never heard the full song, since I was never allowed to hear past maybe the fourth or fifth second when she was slow about restarting the song. Good times. : )

The school year is almost over, and I don't know that I'm quite ready for that yet. I haven't figured out anything in particular to do with the girls this year. They get so bored during the summer that they tend to have more behavior problems. I'm still trying to work on something fun for them to do. Too bad I'm not comfortable with most camps for them. I think they'd really like a day camp.

Other than that, there hasn't really been much going on. Aside from the squeaking and sampling, that is.

Senator Agrees With Hitler's Treatment of the Mentally Ill

This guy should be ashamed of himself. Here is an excerpt from the article:

Barrington Republican Martin Harty told Sharon Omand, a Strafford resident who manages a community mental health program, that “the world is too populated” and there are “too many defective people,” according to an e-mail account of the conversation by Omand. [...]
Harty confirmed to the Monitor that he made the comments to Omand. [...]
Omand says Harty then stated, “I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population.” Omand said Harty appeared to be serious. After Omand responded that his idea sounded like what Adolf Hitler did in World War II, Omand said Harty responded, “Hitler did something right, and I agree with (it).”

 Here is the full article:
http://thinkprogress.org/2011/03/11/gop-senator-siberia/

Cracked iPod/iPod Crack

Celest managed to put a large crack in her iPod touch, which from looking around online at Apple repair quotes it looks like it will cost $99 to repair (I paid roughly $200 with tax for the iPod touch new). This experience has also taught me that she is addicted to her iPod more than I realized. Though we have two iPods, the only one she wants is the cracked one.

This morning she ran through the house screaming for her "phone" (I have an iPhone so she calls her iPod a phone) and shrieking "baby, baby, baby!" every time I told her that her iPod was broken. She rolled in the floor, stomped around, and did an overall grade 8 tantrum (with 10 being the worst). It took her about an hour and some baked cheddar cheese & sour cream Ruffles to settle down. I'm hoping her iPod withdrawal doesn't flare up again later today.

More Joys of Puberty! (or Will I Survive the Next Six Years?)

The girls are having a rough time, I'm assuming because of hormonal fluctuations. We haven't reached the big M yet (or P, depending on what you call it). I'm thankful for that.


However, we have achieved some super-mega fury tantrums. I have a big bruise on my arm where Celest pinched the holy-heck out of me. She was biting, pinching, and hitting both herself and me. That's after she tried to hit Lotus as well. After about 30-45 minutes the rages pass (with or without the help of some calming medicine).

Lotus has a more sneaky method of unleashing her fury on me. She acts like she wants me to sit next to her and cuddle her. Then she'll lean toward me for a kiss. Next she allows her true intentions to be seen: she grabs my head and mashes it into her head. And, if I'm really lucky, she'll pull my hair and try to head butt me in the face.

Good times are had by all. : )  Honestly though, I hope that this phase passes soon. And/or that I find a better way to end the bad moods more quickly.