A La Aspie

We’ve had some really amazing progress in the last six months. And now, there are new developments again! Ethan has always been a really loving kid. But true to aspie form, aside from following scripts, he’s never been a huge fan of physical affection

He always liked to cuddle… but without hands. So, when he cuddled, he didn’t hug or put his arms around the person and often didn’t like to be actually touched with hands while cuddling (no stroking his arm or anything). You essentially became the human pillow.

Outside of a few select instances - like roughhousing, he never really ENJOYED physical touch though. When we had to hold hands to cross a street, we’d cross the street, and he’d pull away immediately. It was necessity, not desire. He’s never really liked impromptu hugging and kissing. He’d tolerate it (a lot of aspie kids won’t - I hated…

Cody has been doing wonderfully as a service dog. I take him with me almost everywhere I go now and it’s absolutely SO MUCH EASIER to go out with him. It makes getting out less of a source of anxiety.

A month ago, I would avoid going to the bank. Today, I’m going with nary a second thought. yesterday, we needed hamburger buns in the middle of the day, a time that I stay clear of stores, and I took Cody and got through it great!

I still can’t take him anywhere with shiny floors because it freaks him out but for short trips to a place with shiny floors, he can sit in the car. I saw a great dog whisperer episode that gave some REALLY great tips and I realize how I reinforced the shiny floor behavior now. I’m going to try to arrange an after hours training session…

Today, I took Cody on our first outing in public. We started with Walmart. I was a little nervous approaching the front door but Walmart staff were very respectful and I wasn’t challenged. Then Tim took off in the other direction, I got nervous and Cody got nervous. We rested for a moment and then plodded onward.

Cody was very well behaved. He focused on navigating around things, he ignored people, for the most part and ignored the stuff on the shelves and wasn’t the least bit frightened of shopping carts. And then the puddle of water happened. I didn’t see it, Cody stepped in it and his feet went out from under him and he panicked. He laid there for a long while, me comforting him before he braved it again and then he tried to do it on his toes. Have you ever seen a dog walk on it’s…

(cross posted to Trusera)

I have been through getting a diagnosis for both myself and my son.

Asperger’s Syndrome was recognized as an official diagnosis in 1994. That means that there are a great many adults who have this disorder who never got a diagnosis. As an adult with Asperger’s Syndrome, not having a diagnosis really sucks. But getting one isn’t necessarily a walk in the part either. Sure, there is a lot of relief. But there is a whole lot of anger and resentment as well as a re-sorting and re-shuffling one’s self and one’s life. Getting a diagnosis for a child is the same process - only on behalf of them instead of for one’s self.

In It’s official, I talk about finally being sure that this ‘thing’ that has plagued me my entire life has a name. For me, it was really important to have a diagnosis, even as…

cross posted to Trusera

Sometimes I look back at my blog and I’m so glad that I had the presence of mind to write some stuff down. When I look back over my past entries … before the AS dx, I’m again, glad that I wrote it down as I went because otherwise, it might be too easy to wash away all the ‘not knowing’ in the glow of the ‘knowing’.

For the first part of my life, I was just a badly behaving child. The intricacies of what it is like as a kid on that side of things - and what it’s like struggling to parent an AS kid, i’ll save for another post. However, there was some point during my life when I started to notice that i was different and started to willfully struggle against it. Not just different in that I listened to different music or wore…

Travel has never really been a part of ‘things I enjoy’. The whole idea of being away from home, potentially staying in hotels or not knowing where I am or what’s around… it all scares me. In fact, I’ve always said I would want to see Tibet and Greece - but I always ‘knew’ I never would because the idea of travel is so daunting.

Travel has always been a struggle for me. I have such odd issues with spacial balance that if I can’t come back to a space where everything is where I expect it to be, I grow very restless and moody very quickly. Being clean is a weird one too. I don’t like showering in showers that I didn’t clean. My shower at home can get grubby between cleanings - but at least I know where that grub has been! :) Every time I travel, it’s…

We had a follow up meeting today with the psychologist who did Ethan’s assessment. The meeting was to go over the diagnosis and to discuss moving forward. She patiently explained every bit of the testing and why it shows that he has AS.

As we move into this new territory, there are several thought processes that come to the surface. They could probably be in posts of their own. In fact, I could easily devote an entire day to discussing each of these points and create an entire ‘As the DX Smoke Clears’ series. I’ll spare you that. Instead, it’s a lengthy post.

What If?
The thought has often occurred to me - what would I have done if the dx had been different? How would I have felt?

Had it come back and said he was perfectly ‘normal’, I would have been frustrated times ten. Much like when Michael’s psychologist came…

Now I’ve got a ream of paper analyzing my son’s reasoning, brain power and learning methods it’s a matter of getting some form of cohesive action plan put together. There are some great action items at the end of the report so I’m starting through those. I’ve enrolled him in a group session starting next year and I’ve submitted written requests for testing through his school.

This is what I’m good at. I’m good at very methodically preparing and prepreparing and preprepreparing and organizing it all into neat presentations and exploring the ifs and organizing those too. I have Asperger’s Syndrome, after all. That’s just every day survival for me. If I don’t prepare, I’m lost.

The irony of this whole advocacy situation is not lost on me. I will need to advocate for him and where that fails, advocate for myself - while teaching him to be his own advocate.…

I was going to post this morning about how Ethan stole some stuff the other day, lied about it and forged a note from his teacher and about how I’m so damned anxious to get all of this under control and about how the awaited report still isnt HERE. And I was going to add a little extra whine here and there about how my sanity hinges on this fucking report being in my hot little hands. But then, today in my mailbox, was the report.

I have to admit, the first time through, I skimmed to the good part. The part when the doctor uses all of her professional knowledge, expensive education and the FOUR WEEKS it took her to compose the report and gives me an educated idea of what’s going on in his little blond dome. I skimmed and skimmed and skimmed… past ten pages of test,…

me: “I bet her teacher probably doesn’t think there is anything wrong with her when she behaves in school. I bet she melds right in….”

me: “… well until she looks up at her teacher with those wide, searching mis-expressioned eyes and states something outright in that halting but oddly annunciated way of speaking in the too-loud voice with the wrong inflection.”

me: “then the teacher would know that her sense of normalcy is misplaced and that there is, indeed, something wrong.”

me : “Something wrong? Why must something be WRONG? Why do I still see this stuff as ’something wrong’?”

me : “As much as I hate to admit it, I do it to myself too. When I totally say the wrong thing or don’t have a script to play back or stand too close or don’t know how to react or come close to a meltdown… I still think of it as ’something wrong’.”

me: “I don’t think there…