Labeling

So, having watched Autism: The Musical, I've been thinking that I haven't talked about how Chase is doing lately, when it was the original reason I started this Blog.

Chase has "high-functioning" autism. Right now his diagnosis is PDD-NOS, Pervasive Development Disorder - Not Otherwise Specified. Nice and descriptive, huh? But, the more he can communicate, I'm thinking that it is more like Asperger's. He really doesn't "get" the finer points of social interaction. Like how hard is too hard to hug, when it's appropriate to hug, kiss, etc. He also can seem aggressive because he doesn't understand this stuff.

I think that he's learning to function. I don't think he'll ever "get it" like neuro-typical children, but I think that he can learn how you're supposed to act and how you're not, but I think it'll be a struggle for him. He has to remember how interactions are supposed to work, because it doesn't come naturally to him.

Watching Autism: The Musical, I see children that do similar things to what Chase does, but they are older. I start wondering what they were like at 3. I think that I always think that they must have been "worse" than Chase, if they're now functioning like him. So, he'll be way better by the time he's their age? Right? That's logical, isn't it?

I just wish it will work out that way, but who knows? This whole autism rollercoaster is crazy. When you first find out, you suddenly "lose" the child you thought you had. Everything you have thought about his future is dead, or is it? While it's not a death sentence, everything in your world is different. My first thought when we got the diagnosis? "We're never going to be able to take him to Disney World or Cedar Point." Seriously. You see all the information about autism and apply all of it to your child, whether it really fits or not. At the same time, he's no different than he was yesterday. And, how much of it is his age, and how much is the autism? (BTW, we've been to Cedar Point and Disney World, both with wonderful results for everyone.)

I wish that everyone would watch that movie and see what kids, parents, and families go through. Maybe instead of people saying that he's overly aggressive, they'd understand that he can't help it and that all he's doing is trying to fit in and learn proper limits. Maybe people wouldn't stare at him standing at a table in a restaurant instead of sitting.

It's hard not to get protective. It's hard not to compare him to the other children with autism. It's hard not to resent other children who start stuff with him and then tattle on Chase when he reacts to them (Thank God for classroom video cameras.) It breaks my heart to see him try so hard to fit in and mix with the other children, and to have one of them say, "Why do you talk funny?" He understands that he's different, or at least he's treated differently. But he tries. How does a 3 year old know to try so hard?

No matter what the outcome of this whole thing, if there really ever is an "outcome", I'm glad that we've gone through it. I'm much more compassionate than I ever thought I could be. All of us have met so many strong and loving children, parents, and teachers.

And, I have a sweet, loving, smart, strong, brave boy who has taught me more than anyone I've ever known. I am truly blessed.

5 Days to go & Easter recap

Have you seen the commercial for TurboTax where the girl freaks out when a guy asks her what time it is? I'm starting to feel that way. I used to have my taxes done by the second week in February. It's amazingly easy to make excuses of why not to finish them: "I'll wait until the kids are in bed. Well now that they're in bed, I'm sooooo tired. I'll do it Saturday. Oh, the kids didn't take a nap at the same time. Maybe tomorrow..."

I just hope that we don't owe money.

Chase
We had a good Easter. We colored Easter eggs on Saturday. Chase really got into it, and his hands are still red to prove it. I forgot my camera today, so I'll have some pictures up tomorrow. He cracked all of them while he was coloring them, but he had fun.

I hid the eggs yesterday morning and he actually got that he was supposed to find them. They were pretty obvious, but it was fun none-the-less. He did enjoy the baskets, dumping everything out of Cory's and placing all of the plastic grass on his head. He ran around just enough to spread the fun plastic green stuff in every room on the first floor of our house. Of course, this was about the same time that Cory discovered the wonders of Peeps. So she had sticky blue hands that easily collected the little plastic shreds. Well thought out, Mom.

We then went to my Grandma's house in Toledo. The kids were pretty good. Everyone can't get enough of Cory, and Chase was loving everybody and jellybeans. He probably ate about 200, according to my mom. He was finding them everywhere. We'd put them up, but he'd find some in another place. Oh well. He worked the sugar out running around with a booster seat strapped to his midsection. Pictures tomorrow!

He was a little hyper, but he played with the other kids, listened to me some of the time, watched out for the littler ones, and gave everybody big hugs and kisses. I would say that he just acted like a sugar-crazed two year old, which he was, with a few speech issues. Nothing that was too "autistic-y".

Now for my rant
The one thing that really got to me was one of my aunts. She has something about her that anything that Chase does, she feels that she has to point out that it's "weird". When he was running around with the booster, he thought he was funny. He was being goofy on purpose. But, she had to point out that it was "weird" to anyone that could hear. She did this before at my mom's house. When Chase wanted her to unzip her sweatshirt, because he thought it was a jacket and saw it as a sign that she was going to leave, she said, "Whoa! That's weird!"

Um, you think that's weird, but the fact that you're a chain-smoking drunk with a gambling problem is normal?

I'm not saying that I'm the nicest person in the world, but saying things like that around a child who can understand you and other children that can understand you makes me so mad. Her grandkids really like to play with Chase. They think he's fine, so why point out to them that he's different and being different makes him weird?

Of course I said none of this to her. It's easier to ignore her than talk to her. I'm madder now than I was yesterday. I hadn't thought about her grandkids taking this all in. I guess that I can only relate her stupidness to her feelings of inadequacy when comparing herself to my mom and her son to me. She's never liked us very much. I don't think that I'm going to be able to let it go next time. I don't want to start anything big with her, but I'm not going to allow her to keep up this negativity around Chase.

Anyway, that's my rant.

Crazy Weekend

First, I should mention that we're testing Chase's success with the GFCF diet. He's been off of the diet this last week, but continues to take his supplements. He is doing extremely well in my opinion. I have not seen anything that looks like a negative reaction. We'll give it a month and see what we think. We're not telling the therapists to see if they notice anything.

We had Cory's birthday party this weekend. I'll hopefully get some picture up soon. Chase was very good, although he and Ethan really enjoyed running up and down the hall of the hotel. There was a mix up with the room we had reserved, and issues with the cake, ice cream, and me forgetting a bunch of stuff.

Chase went swimming twice and loved it. He really figured out the swimmies/waterwings. I'm excited to go to swim therapy and see how he does there. He didn't want to get out of the pool at all. He was very interactive while we were in there. He even said a new word - steps.

Non-Chase Issues
Then our propane ran out, but we had no idea. We now know that propane seeping into your house smells like a poopy diaper. We're getting more brought out today. Fun. I miss being connected to natural gas.

Next, Cory hit her face on the coffee table, and Chase wasn't even near her. Nope, she did this one on her own. She's got a fat lip and cut that thing that holds your upper gums to your lip. She's ok, but looks like she got in a bar fight.

Then, this morning, I had just pulled out of the driveway and could see a bump in the road. I always assume it's Mica (our cat) but usually, it's a squirrel or rabbit. This was a cat, but it was so dark, I couldn't tell if it was Mica. I didn't see a collar, but I had to be sure. I went back to the house and picked up a flashlight and snow shovel. I confirmed that it wasn't Mica and moved the poor black kitty off the road. That really got to me. Poor thing.

My Issues
Top of all this with me just being general crabby all weekend. I need to figure out how to keep from snapping at Craig about little stuff. Does any other mother out there get sick of feeling like you have to handle everything and make every decision? Ever feel like you can't handle making one more decision? Or, feel like you have to explain everything in painful detail to get your husband to understand what he needs to do to help you out? I always feel like, "Um, how come you don't just know this? I do!" That's my rant for the day. I've been a little on edge lately, and Craig gets the brunt of it. Sorry honey.

Too much thinking.

I'm feeling crappy today. I'm really feeling sad about what Chase is missing. Poor kid. Last night he found several things that he wanted to eat, and I couldn't let him have them. He even wanted yogurt, but refused the soy kind. I've been doubting the GFCF diet lately. We just did so many new things at once, I don't know what is really helping and what isn't really doing much.

Right now, I think it's the extra speech therapy, vitamins, probiotics, DMG, and B12 shots that are helping the most. I really want him to be able to eat "normal" food soooo bad. I think that maybe we'll try adding some things back in this month and see what kind of reactions he has. I did notice yesterday that he got really goofy hyper after he ate an apple. It makes me wonder about the phenol thing. I need to learn more about that. Although, he was tired and maybe that was just the problem. We'll have to test that one out and talk to the DAN! doctor about that. Oops, I really need to figure out when that appointment is...

The Weekend
We had a pretty good weekend. Chase was really very manageable and seemed very "with it". We ran to the mall to mail the invites for Cory's party and to return something to Kohl's. We had to wait about 10 minutes in line at Kohl's, and Chase stayed in the stroller and was really good! He even said "Hi!" to another little kid. Yay for Chase! (And for me.)

My Issues
I talked to our friend Michelle this weekend. Her little girl is exactly the same age as Chase. Michelle was saying how Jaden has been bossing them around. She's saying whole sentences about "Mommy, I want to watch this movie!" and other things like that. That's the times I realize how much I've lost in all this and feel sorry for myself, which I then feel guilty about (of course.)
I should be so thankful that Chase is as loving and interactive as he is. I shouldn't concentrate on the fact that he can't vocalize everything. Arg. It's so frustrating. I thing what gets me with all of this is that I still really believe he's just going to start talking one day. He'll start talking and all of this will be behind us. When I see "normal" kids, it hits that belief kind of hard.

Here's some pictures to make me feel better. They're from New Year's eve. Chase went to bed, but got back up in time for the countdown. He even toasted with us (sparkling cider, of course.)



There. I feel better now. :o)

If you haven't gone through it...

It's really hard when you first mention to someone that your child is autistic (stranger, friend, or family) how to explain to them what its like.

Most people, mostly at work, go "Oh! I'm SOOOO sorry!" That bothers me a little, although, it's what I would have said a year ago. I've responded, "It's not that bad, he's on the high-functioning end of the spectrum." But, it is hard to deal with everything and even harder to give others an idea about what we go through.

I wanted to share a poem that I found on AutismSpeaks.org, which itself is a WONDERFUL site to start your information gathering. I found this over a week ago and still cannot read it without tearing up.

Perspective - A Poem for Jaren
by Barbara Spires

When you walked on your tippy toes
at the age of 11 months
We called you Skillful

When you playfully flapped your arms
at the age of one
We called you Adorable

When you methodically piled up the laundered clothes
at the age of 15 months
We called you Eccentric

When you memorized every alphabet, number and color
at the age of 18 months
We called you a Genius

When you climbed the tallest furniture piece
at the age of two
We called you Fearless

When we told them all that you can do
at the age of two
They called you Autistic

And as you keep challenging yourself
to reach out to us
at the age of three
We choose to call you...Awesome

If you really want to get a feeling for the ups and downs that parents of autistic children go through on a daily basis, please view Autism Every Day. The first time I viewed this 13-minute video, I cried because I finally didn't feel like I was the only one going through this. There's a longer version that was played at the Sundance Film Festival and I'm very excited to see it.