Sunday, July 27, 2008

Very Sad, Scary...

Don't know how many of you have heard the news about the church shooting here. That church is just minutes from here. That is the church my brother & his girlfriend attend. They changed their minds and did not go to church today- THANK GOD. The victims are at the hospital I work at. What is this world coming to? Follow the link to read the story

Saturday, July 26, 2008

Autism Lesson #3651

After having a hot water heater break and need to get floor redone, prepare child for several days. Moving everything out of kitchen, pantry & laundry room is very stressful. All stuff is not where is SHOULD be which causes outbursts, increased stimming, generalness to make it "autism sux day" - which causes stress for rest of family.

Wednesday, July 23, 2008

The Invisible Girl & Ignorance

We want on a mini-excursion last week to make it feel like we went on a vacation (more on that later). We went to a place called Nascar Speedpark. It has many different types of go-karts and rides for kids. MM was standing in line, the only one at first, and another little girl walked up. She attempted to talk to MM who doesn't speak with children she doesn't know, she usually just flaps. I don't know why, but the little girl then just pushed past MM, cutting in front of her in line. I told the little girl that MM was there first and get behind her in line. This has happened more than once. I was so pi$$ed (and my heart was hurting) about it that I went over and was telling my mom how sick I am of other children treating her like she is invisible just cause she doesn't respond in a typical manner. I was going on about it and guess what? There was the little girl's mother right behind my mom. I hope she heard every word and will teach her child compassion and awareness- I get so sick of being a public service announcement for people's ignorant a$$es! I doubt it though. If nothing else, how about some basic manners about waiting in line and taking turns?!?!

Disabled does not equal invisible!

And while I am on a rant about ignorance, don't get me started about that jerk talk radio guy Mi.chael. Sa.vage (I am splitting it so I don't get trolls who love him on this blog). In case you haven't heard his dumb butt comment here it is:

Now you want me to tell you my opinion on autism since I’m not talking about autism …Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is... a fraud, a racket.

What do you mean they scream and they’re silent? They don’t have a father around to tell them don’t act like a moron, you’ll get nowhere in life. Stop acting like a putz. Straighten up! Act like a man! Don’t sit there crying and screaming, idiot.

Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." Stop with the sensitivity training.

**these may not be in correct order, but are pieces of the statements he made**

Normally, I don't care about things that are said like this. After all, this is America and we are entitled to freedom of speech. The problem I have with this is he does not represent himself as some comedic shock jock like Ste.rn or If they had said this, although in poor taste, it would not have really mattered. They are attempting to be funny. This guy is one of the leading conservative voices of America, right up there with and Ha.nni.ty. He is spreading his ignorance to a large portion of America who values his opinion. He claims to be a very learned man. It is just cruel and thoughtless to make statements like this. I think that the statement issued by Autismspeaks sums it up best:

One important goal of increasing awareness about autism is to foster a greater level of acceptance and understanding of the very real and significant challenges it poses to individuals with the disorder and their families. The good news is that we see more and more expressions of this compassion every day and everywhere, from classrooms and playgrounds to ballparks and supermarkets. Unfortunately, there are those who are apparently incapable of feeling compassion. They deserve our pity, not our scorn.

I agree with the statement except for those deserving our pity- WHATEVER! I have no time to "Pity the Fool" as Mr. T says! I say all of us with ASD kiddos load them up and drop them off at his house for just a few hours- I bet he would change his opinion really fast. I also did not realize he was an expert in ASD. Wonder how long it takes to get an appointment with him?

All I can do now is give a big internet wave at this guy with one finger, letting him know he is number one. Tweet Tweet- do you see my bird?

Does Anyone Know...

Why my bloglist takes forever to update? Does it only update when I create a new post? Hmmm...

Wednesday, July 9, 2008

Too Cute

MM had to get her legs casted for her new DAFOs today. She did super well. The gentleman who does them told her "Wow MM, you did so good. You are perfect!".

Her reply:

"I not perfect..... I just great"

We all had a good laugh, then tears filled my eyes. They were happy tears cause in my head I was telling her:

Oh sweetie, you ARE perfect & you ARE great.

And this is one of the good moments in autism....

Thursday, July 3, 2008

Enjoy (NOT!!!) this Treasure I Overheard

Was charting at the computer at work the other day. One of the residents was talking about how she had abrupted her placenta & when her daughter was born her apgar was 1 and her blood gas ph was 6.9 (that is really bad btw). She then perked up and was a apgar 9 at five minutes. She was saying how lucky she is & at 4 months the baby is meeting all of her milestones, etc. She then said "I am so thankful, I didn't want to have to become one of those mothers". WTF does that mean?

I just sat there, trying to finish my charting through my tears. It has been such a rough week I couldn't respond like I normally would.

Some people just don't get it, do they?

Edited to add that this resident has no idea about my life @ home. It is just interesting to hear how people really feel when you are a fly on the wall.

Sufferin' through Autism Sux Week

UGH! The headline says it all. She has been in her zone, on her planet for the last week. When she does come into our world, she has been really aggressive. It often comes in the form of kicking me. I have some lovely bruises to show for it. I have always felt blessed cause she wasn't one to hit, bite, etc.- well, I can hear the gods laughing at me. I can't begin to tell you how many times I have cried this week. I know that it is just a rough patch, but whenever we go through these times, I get scared. I am afraid of losing her into her world. I have read many stories of girls with ASD who talked until age 5 or 6 and then became non-verbal. We have worked so long and hard to get her into our world and it just seems sometimes she has to retreat. I am thankful that she comes back, but fearful that one of these times she won't.

Most days, I think her ASD isn't that bad. I guess cause I see her at her worst & at her best. As she ages, it is becoming more & more evident how different she is. My nephew is here for the summer. He is 8. He keeps asking "why won't MM talk to me?", "why won't MM look at me?", "why does MM ignore me?" and most heartbreaking- "I don't think MM likes me cause she won't play with me". How do you explain autism to an 8 year old? I am on the hunt for a book that puts it in simple terms and will sit down and talk at length with him. I try not to answer him in front of MM cause I don't want her to know she is any different. I just don't know what the right thing to do is. It just makes me sad that even children are starting to notice how "odd" she really is.

Part of the reason for her being so "off" is she is off schedule. Even though she goes to ESY and a mom's day out, it just isn't enough. She needs long school day with lots of intervention. I try to do as much as I can, but I can't do it all- her hours of intervention, work, keep up with house, groceries, laundry, etc... I have never had a super hero outfit & guess I never will. ***sigh***

The other part of the reason is somehow all of the specialist appointments have come due this month. She hates to have her routine interrupted, let alone it being for the doctor! YIKES!!!

Eye dr went well- eyes better than in April, keep up the glasses, no patching at the moment, see you next April- WOW 9 months!!! Can't believe it. Of course return if any changes.

Saw the physiatrist today- not so good. She can either be really positive or super negative. Today was negative nelly day. It didn't help that MM was in full on tick mode. She made the same noise almost the whole appt along with the shoulder shrugs & hand flapping. Her fine motor skills are still so lacking, her balance was very poor today, her tone is worse in her hips, etc, etc, etc. Sometimes you just get to a point where you tune it out. There were some bright spots: She needs new DAFOs cause she has outgrown hers. This is the first time EVER she hasn't made it a year on them- most kiddos make it 6 months. She has gained & grown like a weed over the last few months. She also definitely called her gifted and said I need to fight the school for a 504 for her now. She said she falls into the rare category of disabled but gifted! All this while she was so out of sync today! That really made my day.

We are supposed to see the immunologist, but I think I am going to reschedule. We also have our 5 year exam with regular pediatrician and am not looking forward to the vaccine fight. I hope it isn't that big of a deal, but am ready either way.

Vacation is on the horizon! It starts a week from Sunday, the week of the 13th! Won't be going anywhere, just some day trips to Pigeon Forge. She just can't handle going any where right now I do just want to try to do some "normal" family things though like the water park. We will see...