try it like this, not like that

I just completed a parent survey for a local autism group and it made me start thinking a lot about how people (usually strangers but sometimes acquaintances) react when then find out that Alden has autism.

• The "I am SO sorry." person.

Why are you sorry? All I can figure is that these people think they are being nice by feeling sorry for him? Or are they saying they are sorry for ME for having to "deal with it"? Either way I find it off-putting.

I AM SO SORRY that your child is different! Really? Because I'm not. I wish he didn't struggle with socialization but I bet you wish your kid didn't struggle in math, or sports, or whatever they don't excel at. I don't really see his autism as a handicap. He's healthy, he's happy, and he's probably smarter than you and I could ever hope to be. I worry about him like the mother of a neurotypical (that's "normal" for you laymen) child worries about her kid, no more, no less.

• The "He has autism? I couldn't even tell!!!" person.

First off thank you, he has worked his ass off to get to that point!

You couldn't even tell? Well how about that! I am NOT going to act like Alden hasn't progressed to the point where his diagnosis could be in danger if they change the Diagnostic Criteria, he has. He's excelling like crazy in all areas right now and he's getting close to being caught up with his neurotypical peers.

Here is reason #1 that this bothers me. You can't tell because you don't know what to look for. He doesn't wear a sign that says "I HAVE PDD-NOS!" He does however flap his arms, not respond to YOUR questions until *I* repeat them to him, and he doesn't make eye contact. You don't know he has autism because you don't know what to look for.

Reason #2 this bothers me is because when Alden was a lot lower functioning when he was younger not ONE person who didn't know his diagnosis EVER said "Oh, does he have autism?" or "I understand what you are going through". They said "Can't you control your kid?' , "What is his problem?", or "Nothing a spanking wouldn't fix". This was back when you assume that you would have been able to tell, but there's a 98% chance unless you KNOW what to look for that you would have thought he was just another bratty kid.

I'm not BLAMING these people, I'm saying it bothers me. People DON'T know what to look for. They think of Rainman, they think of kids staring into space not even in contact with this world. They don't understand what autism is because they don't deal with it. They "have a cousin who's little boy has it too" and that is the extent of their knowledge.

• The "what medication is he on" people.

To me, these are the worst. Not only are they assuming that he's medicated because he's acting "normal" but they also assume that I'm like the hoards of others who drug their kids into oblivion to get them to sit down and shut up. I'm not. I'm not saying that he will never need medication, I am not saying that people who medicate their children are evil, and I'm not saying that some people don't need to be medicated. I'm disgusted that we live in a nation where the first thing people assume is that "we throw pills at it to make it go away".

As I said before I don't blame these people, they just don't get it. Part of the problem is that people are uneducated about autism. Something needs to fix that.

When you find out my child has autism ask me questions about it. How old was he when we found out? What is he doing right now that would tip a person who is familiar with it off? Educate yourself, don't feel sorry for us. We are fine, we are happy, and we don't know any different.

tiny update

We had Alden's annual IEP meeting yesterday. Thankfully it went very smoothly & everyone is one the same page. He is really thriving in his new classroom and I really like his teacher. He has been having a lot of fun this year and actually seems to be enjoying school.

He finished his February reading chart in 7 days! I'm really proud to be raising a fellow bookworm!

Not much else going on at the moment, just hanging out watching him watch America's Funniest Home Videos right now (his commentary is SO much funnier than the show itself), while I sit here and read my book.

so tired

Alden is doing absolutely brilliantly. I heard from a professional that I'm in touch with that his school teacher has been bragging about how well he's doing in class and how much speech he's gained in just a month and a half.

This week is the book fair and he's spent $28 there, and I thought I was obsessed with the book fair when I was a kid!

He and I have started a project together to give his bedroom a makeover. We bought about $50 worth of paint to fix it up. We're going to paint over his current theme (Dr. Seuss characters) with a comic book theme. It's going to be so cool! We got my old drum kit out of storage and it's now in his bedroom. He is loving it! I'm having to get used to them being in the house. If you aren't the one behind them it can be quiet scary if you're sitting in another part of the house & there is a huge cymbal crash!

gotta go back, back, back to school

We found out yesterday that Alden will be in a different class this year! I'm so pleased as I was not a big fan of his other teacher. He is going into the second grade but he will be in the 3-5 class. All the children we met who he will be in class with were verbal so he will actually have someone to talk to this year! His friend Joey (the only friend he ever talks about because I guess Joey is verbal as well) will also be in his class. He wasn't sure about moving across the hall at first but once he saw the new toys they had he was game. I personally thought the room was laid out in a much more aesthetically pleasing way. There was a large space in the middle of the floor instead of all sorts of shelves all over the place like his previous class.

I can see him growing a lot in this environment. Especially since I noticed that they will be using technology this year! He will get to work with an iPad in class instead of just the computer in ST and OT. He will also have his communication device that I'm going to go program at the seminar tomorrow.

We will still be having an IEP meeting at the beginning of the year (likely in October to give him a chance to settle into a new environment) and we will still be pushing for at least one inclusion class. We feel it's important that he grows up with neuro-typical peers as well.

Waking up for school tomorrow should be interesting because I keep forgetting he has to get up at 5:50 to get out to the bus on time. We haven't bothered fixing our schedule yet. Oops!

are you talkin to me?

I somehow forgot in all the Disney excitement to mention that Alden was chosen for a study! He will be using a Vantage Communication Device for a month as a trial to see how well he learns from it. The people from the center in charge of the study came by today to videotape him for the "before" and they were absolutely STUNNED at how well he did with it. I always tell people he's a computer nerd but they don't really believe me for some reason. Anyway it's a really cool touch screen device and I am going to the parent training seminar on Thursday to learn how to customize it specifically for him. I'm very pleased that he was selected and I'm even more pleased that he showed them how quickly he picks up on things related to electronics.

School starts back on Thursday and I am absolutely DREADING getting up that early to put him on the bus. We have NOT been getting back on schedule like we should be. Guess we'll have to start that tonight. I've written his teacher a note that we need an IEP ASAP because he mastered all of his short term goals relating to regular classroom speech over the summer! He is really taking off!

Disney World!

We just got in from Disney and we had an absolute BLAST! Alden was great the entire time. When we got to the resort he actually thought it was Disney World because there were 30 foot statues of all his favorite characters, two pools, an arcade, a food court, and a shop. He was SO sad when we left but once we got into the park he was excited again.

His favorite ride was the Buzz Lightyear Star Command ride in Magic Kingdom. The only ride he didn't like was Dinosaurs in Animal Kingdom, and to be honest none of us liked it. All for different reasons. It hurt Tim's back, it was too loud for Alden, Josh didn't like that the guy was screaming over the already loud dinosaurs, and Lynnda & I didn't like that we were being jerked around (quite forcefully) in complete darkness.

I think my favorite ride was probably Aerosmith's Rockin Rollercoaster. Josh and I rode it on one of the nights we got to stay late in the park (for staying in a Disney Resort) and I was SO scared. I ended up loving it. I absolutely HATED Soarin' apparently I am NOT a hang-glider.

Alden only needed his headphones a handful of times. We forgot them during Fantasmic but he just covered his hands with his ears and really enjoyed the show.

He used them during the Nemo Musical which he absolutely loved. So he sat through his first musical and his first movie in a theater. He used his headphones during it too, the Muppets had crickets chirping in their movie and for some reason he is VERY sensitive to that sound lately.

I had a headache the first day from all the 3D stuff but I really enjoyed it regardless.

Josh didn't like Expedition Everest because when you go up to the top and then you go backward it jerks you really hard and it hurt his back. The photo of us from that ride was hilarious, I'm screaming with my hands in the air & he's grimacing in pain. A perfect analogy for our relationship.

Noteable things Alden enjoyed: Kali River Rapids, Star Tours, Fantasmic, Teacups. Those were the ones you could tell he was having the best time on (Besides the Toy Story rides of course).

The night of his dinner he absolutely insisted we go ride Buzz Lightyear again. So we ran to the other side of the park, rode the ride, within 5 minutes...ran back out, then had to pee and then we RAN back to the other side of the park and made it JUST in time.

He LOVED his character dinner, he jumped up and joined the Friendship Day Parade with Pooh and his friends, marching & clapping while going in a circle all over the restaurant. The dinner was seriously overpriced, but you CANNOT put a price on seeing your child participate in something like that, especially when they are not one to join in group activities! It was so adorable.

I think the longest we waited in line was maybe 5 minutes. That was for Alladin because they didn't have FastPass or disability pass. It was absolutely AMAZING. Sadly we didn't get to ride Pirates of the Carribean or Voyage of the Little Mermaid. Pirates was broken and Ariel was being updated.

That's all I can think of right now, I'm pretty brain dead from doing an 8 hour trip home today. I'm going to unwind with a glass of wine and catch up on some TV. I'll update more later if I think of anything that was particularly awesome (which it all was)!

Here's a breakdown of what we did in the parks. (more for me than for you)
Day One
Hollywood Studios
Toy Story Mania
Star Tours
Muppet Vision 3D
Met Handy Manny, Leo & Annie

Day Two
Magic Kingdom
Buzz Lightyear Star Command
Met Chip & Dale
Peter Pan's Flight
It's A Small World
The Magic Carpets of Alladin
Mad Teaparty
Snow White's Scary Adventures
Splash Mountain
The Many Adventures of Winne the Pooh

went swimming in the Fantasia pool


Hollywood Studios
Fantasmic
Aerosmith's Rockin RollerCoaster*

Day Three
Epcot
Soarin
Inoventions

Hollywood Studios
Toy Story Mania
Star Tours

Magic Kingdom
Character Dinner with Pooh, Piglet, Tigger, and Eeyore
Buzz Lightyear Star Command
Wishes Fireworks

Day Four
Animal Kingdom
Kilimanjaro Safaris
Pangani Forest Exploration Trail
Kali River Rapids
Finding Nemo the Musical
Dinosaur
Triceratops Spin
Met Baloo
Everest Expedition*

Epcot
Illuminations

long awaited update

So it's been, more than a while. Alden's foot healed quickly (likely within two weeks) but we made him leave the boot on an extra week because of how hard he is on his toes.

We ordered the sample enzymes from Houston Enzymes and next Wednesday we are planning to give them a try. It would be REALLY awesome if they worked but I'm not banking on it or anything. We got the TriEnza and the No-Fenol if anyone wants specifics. I'm planning to order some breadsticks because those seem to be the "regular" food he misses the most.

Alden has started drawing pictures of himself in various costumes and with certain super hero powers. They are pretty much the coolest thing ever. He's also recently started telling us his address and his birthday which is great. We waited this long because a few years ago (when a typical child would learn these things) he would just randomly start chanting words and phrases he knew over & over. We felt that this could lead to a safety problem but now that he understands speech a lot more and can answer questions we are comfortable with him knowing these things.

I've been sick as a dog this week but tomorrow I am going to an autism conference. I went last year as well, I didn't learn much but it's always good to refresh and meet new people.

Christmas Dread

Secret Santa is a pastime that I'd like to keep that way. I've never liked the idea of giving a gift to someone I don't know well or getting a gift from someone who doesn't know me well. Gifts should be personal and special and not something you are required to do.

This brings me to my point. Alden's class does Secret Santa every year. Every year I agonize over what I should get. There's a $5 maximum which even in the junky stores is hard to adhere to since the good stuff is all at least $5 most of the time.

Then there's the whole autism bit, lots of kids with autism are fixated on one thing, or have irrational fears of things, or just plain will not play with certain toys. For instance if you gave Alden a Matchbox car he'd probably set it down, and go get on the computer. He doesn't care about them at all.

I NEVER know what an appropriate toy is for his randomly selected classmate. I end up buying a Batman toy every single year because I'm at a loss for what to get. Some parents don't let their kids play with the "bad guy" action figures, which is stupid, Batman can kick Spiderman's ass just as easily as the Joker's in pretend play (and let's be real DC > Marvel & Batman > Spidey & could totally take him down.)

I have a hard time shopping for people I know and love, so shopping for a random 6 year old kid that I've met once for 5 minutes is impossible.