Sunday, May 29, 2011

No Queen for a Day Story Here?

So I’m sitting here listening to some emotional, soulful rock song that invokes an emotion in me. I remember very clearly a few years back feeling that somewhere along the road of my life, I took a sharp turn, and my life hadn’t worked out the way it was supposed to. It was not how I imagined.
                It’s funny because I don’t feel like that anymore. I remember when I got pregnant with my son, my whole life, my whole perception of that life, changed. I felt like I had lost myself and then found something beyond myself. So it’s funny to me when people seem to… feel sorry for me. Ha! I do not mean to feel ungrateful towards friends who have genuine sympathy for my “hardships,” it’s sweet. I’m not offended and I appreciate any warm hearted thoughts. But there is this perception that somehow my life is harder than it is rewarding and fun and happy, and it’s false.
                I remember when Wylie was first diagnosed with autism, I immediately was ready to come up with an action plan. I started reading all I could about prognosis and I… really got nowhere. Nobody knew exactly for sure how it would go. Then I started exploring treatment ideas and I kept coming back to 35-40 hours of ABA based therapy. 40 freaking hours. I work full time. I’m in college. Taking on another full time job (ABA is for the most part INSANELY expensive and most people implement some sort of home program) seemed impossible. I crumbled. I crumbled because it seemed there was no way. For unselfish reasons, I worried about letting my beautiful baby boy down. For selfish-er reasons, I thought this was going to ruin my life. It’d be a cruel and harsh life- more work than I had signed up for.
                I ended up being wrong about both concerns. Not that Wylie exists as some sort of validation of my own life, but it is extremely satisfying to put on a brave face and face adversity. I embrace it. I got used to the routine and stopped feeling pangs of jealousy when people talked about… sleeping in. Haha. Still sounds like a wonderful thing, but if the hardest thing about my days is that I’m extremely busy taking care of my child, these are pretty good days, I’d have to say, and I’ll embrace them. My son is young and happy and healthy. I know not everybody is this fortunate and their children are suffering, and I will not take our good fortune for granted. My life is not ruined, and I have the strength to be as good a mother as I need to be. It's not always easy and it's not always fun, but it is always worth it. Don't worry about us too much. Be concerned and have love in your hearts, please, but we are pretty happy go lucky people.              
                (Shrug). Just for the Record. : - )

Monday, May 16, 2011

Week in the Life

I am at the end of my 9 day vacation from work. I wasted it, pretty much. But I feel pretty de-stressed and I’m thankful.

Wylie and I have been having a lot of fun together, actually. I’m really impressed with him. He has been pretty clear about what he has wanted and using his words. He’s starting to identify family members here and there.

I took him to the park a couple times. Usually we go and it is deserted, but I was able to take him on a weekend afternoon and there were some kids there. Some older girls. Wylie really had a fun time following them around. I may have acted a little bit nervous, and a couple times the mother of two of these girls had to reassure me that he was fine and not bothering them. He imitated them and I was very pleased. He went on the “big kid’s” swing (he actually insisted on trying every single one!) and watched one girl pump her legs to go higher, and he tried that. One little girl showed him how to climb up a slide and he thought that was hilarious. Then he tried to steal her scooter. “Sharing” is something we can probably start working on. But I think that is awesome. I’m really proud of him.

He’s showing some signs of potty training readiness, and he really doesn’t like being in a wet/dirty diaper, and will ask to be changed now.

I have to say, I am just in awe over how far we have come in less than a year. He really is such a shining star. I don’t mean to gush, but what the heck. I mean, not only does he communicate, he negotiates. He wheels and deals. His language is coming along slowly, but surely.

He’s a pretty happy go lucky kid. He obviously has sensory issues, but really, so far, he seems to cope fairly well. I hope we get to a point where I could talk to him about it—he does not seem overly bothered by anything, but I catch him calmly covering his ears or squinting or blinking at things. He’s obviously hyperactive. Not only can he never stay still (he runs in place, bunny hops, and climbs over everything- furniture, people, dogs, you name it…) he can never stay… upright. He leans against things, rolls over the ground, asks to be picked up just to turn into deadweight so that he swings upside down… Several people have talked to me about this sense of uh, body position, kinda, called the proprioceptive sense, where a child who has issues having a sense of their own body might always lean or bump into people. Even before Wylie was diagnosed, even before his regression, I found his “leaning” behavior odd. That being said, he sorta turns into Neo from The Matrix when it comes to quickly averting collisions and dodging other objects- he has an incredible sense of his surroundings and great balance, and he’s quick on his feet, extraordinarily so.

He’s comes off pretty laid back and does not seem anxious at all… I have been really interested in the anxiety problems associated with ASD. I have not really seen definite manifestations of anxiety in Wylie, but he DOES stim a lot. I mean, I wonder if he is coping very well with existing issues or if he has only mild issues with anxiety or if there is actual biological differences between Wylie’s ASD and others’ that would cause significant differences in the role anxiety plays… I dunno, been on vacation, thinking a lot. Haha. My racing thoughts seem to clear my head, actually. Vacation Meditation. Maybe I’m just not perceiving all of his issues.

Reading Temple Grandin’s Animals in Translation. Great book, by the way, if you haven’t read it. Probably why I started thinking about Anxiety. She describes it as a core problem for those on the spectrum. She describes a lot of cool stuff, actually. This is the coolest book I’ve read by her, so far, I’ve also read Thinking in Pictures and The Way I See It. This book uses information about animal behavior to reveal points about human nature, and differences between the typical and atypical human mind. I’ve really just started it and it’s just some interesting stuff. Already a lot of straightforward information about genetics, neurologic functions, brain development, and behaviorism.

I know that was sort of a hodge podge of information, mostly communicated in the form of sentence fragments, so thank you for reading it if you made it all the way through! This was a week in the life. Pretty good one, at that.

Monday, May 9, 2011

"He doesn't seem autistic to me"

"He doesn't seem autistic to me" is one of those common phrases heard by parents of ASD children that can provoke all sorts of emotions. My fellow moms have expressed their anger, frustration, and sadness when an ignorant person makes a remark like this.

Today I heard this from the woman who runs Wylie's school- a wonderful BCBA who knows Wylie personally and often remarks how much he reminds her of her little toe-headed toddler who can also be spotted running around the building along with the other kids. She works closely with his team, monitors his progress, and has always been proactive when it comes to his behavioral treatment plan. When she said this to me, I was mostly perplexed.

I think she's wrong, by the way. And I argued with her. I’m not even that puzzled that a professional might say something like that about my son, but. I find it strange. I find it strange because there are other MUCH more high functioning children attending her school than Wylie. I think I have to pull the other parents aside and figure out if she’s ever said such a thing to them, as well. HAHA! The conversation I had with her went something like this:

“What specifically do you think is missing from his characteristics to warrant an ASD diagnosis??”

“Well. I just wouldn’t call his problems ‘pervasive’ in the strictest sense. I think he has more of a language disorder than anything else. Socially he’s reserved, but not exactly withdrawn. He’s laid back. Aloof. Most of the kids I see are either withdrawn, overwhelmed to the point of not being able to interact, or socially anxious. That does not describe Wylie. He just isn’t really motivated to be social.”

“Hmm. It’s a spectrum disorder, right? It could manifest differently with different kids, right?”

“Yes… but he just is getting everything academically. Everything we ask him to do, he does. He understands everything.”
“Hmm. He’s 2 and he doesn’t really get 2 step commands. It took us a while to get 1 step commands.”
“Language issue.  Sensory processing issue, maybe.” (For the record, she has basically conceded that he has social, language, and communication dysfunctions at this point… now she’s bringing up sensory processing. Sounds… a lot… like autism… to me…)
This woman and my developmental pediatrician are, like, totally into each other, too. And my developmental pediatrician is always seeing Wylie in the WORST light, and seems to always bum me out using a pretty grim deficit model to describe him. Heh. They take each other’s opinions very seriously, and yet they are at opposite opinions of Wylie.

I’m just confused. It is really interesting how two different people looking at the same child from different perspectives can come up with completely different conclusions about him. I don’t find the BCBA ignorant or dense or less than diligent when it comes to her research or her ABA treatment. She has actually persuaded me several times when I challenged her course of action (most recently she has been suggesting replacing some of his one on one DTT (discrete trial training) hours with social groups and I originally opposed). It IS true that the people here seem to be more on the severe end of the spectrum. I don’t exactly see a lot of aspies at his school. Wylie is obviously intelligent, and even Mr. Pessimistic Developmental Ped has used the word “gifted” to describe him. He has no splinter skills and does not appear to be “profoundly gifted” or a “genius,” but he’s bright.
“I really think he needs to be in regular pre-school. I would even suggest not telling them about the diagnosis. I think he will easily get the academics of it. We are teaching him how to learn from his peers. The concern I have with Wylie is that he just seems like he could really care less about social interaction, and some pre-schools aren’t going to push that interaction. He doesn’t really have any serious behavior problems. We could go interview some schools together, tell them he’s shy, and see if they can pair him up with maybe a bossy older kid with an assertive personality to lead him around.”

Uh. Hmm. A little dumbfounded. But I think about it. Perhaps some preschool director WOULDN’T realize Wylie isn’t quite sure who “Mommy” is. I’m not really against hiding the diagnosis in this case, but it doesn’t really sit well with me that A) I think his therapist actually doubts his diagnosis at this point and B) I’m thinking he really wouldn’t “pass.” Then again, this isn’t really something that needs to happen tomorrow—I don’t think she is completely off base when she says he may be ready for preschool by the time he’s 3. He’s definitely a smart cookie and his language isn’t stagnant—he makes spontaneous requests for familiar items, his vocabulary has expanded since his 2nd birthday, he sometimes (rarely) strings words together… his stims are still quite severe, he screams and squeals and jumps and jogs in place… repeats nonsense phrases like “Tickletickletickle DAH… tickletickletickle DAH…” I could see him distracting a whole classroom.

Oh, anyway. Who knows. Structured Preschool with academic credentials sounds a little expensive, too. I’ll start looking into it. I still haven’t really perfected his current treatment right now—  I still want to look at some additional speech therapy.

It’s a lot of work. Wylie, Mommy’s not trying to rob you of your childhood, I promise. But who are you kidding, you would waste a lot of it watching Spongebob reruns if it weren’t for me.

Thursday, May 5, 2011

pretty skeptical here (hater alert...)

For whatever reason, I found about ten different blog posts about the BAP test today.

Took it myself.

Shared my results.

Had a little fun!

It's still a self reporting vague survey on par with Vogue's "What's your sex style?"

Don't mean to be a hater. Don't think this is really science. Nice for self reflection. Not really science, tho.

And it's on OkCupid.

Monday, May 2, 2011


I just caught Wylie chowing down on some chalk. This isn't the first time he has done it. He loves drawing with sidewalk chalk out on the patio, but I'm not really sure where this piece came from, since we are all the way on the second floor and nowhere near the backyard... Won't eat regular food, but this is what you'll eat?