Don't Lose the Expectation Speculation Game

LOL. Wylie and his dad are being “independent.” They have sorta both abandoned me and left me to watch this Baby Bumblebee video by myself. Wylie is right on time developmentally for um brattiness… The octave he hits when he squeals “Noooo!” to every single request and suggestion is grating on my nerves. You are kinda lucky you’re cute, Buddy…

But right now, he is being fairly good, mostly because his dad is chilling out with him watching Spongebob instead of making any demands on him. Haha. Eep. Spoke too soon. I hear “Don’t hit,” followed by whining, followed by “Wanna say hi to mommy?!” aaaand the famous “Nooooo!” Thanks a lot, Son. I feel the love. Haha.

I sort of spaced and did not realize today was the first day of school for me. Haha! Pretty typical of me. For me? Not sure. And I used to be a writer. Couldn’t have got my butt back to school fast enough, apparently. Yeah, I was a college dropout, and a brat for the first half of my 20s. Wylie really mellowed me out. I became a mommy and suddenly I wanted to be good enough for him.

My parents are proud that I have decided to go back and earn my degree, but realistically, growing up, it was something they would have never questioned. Of course I would go to college after high school. Of course I would quickly earn my degree in a timely manner. Of course I would get a great job and buy a great house and start my own family in a very typical fashion. Buhahahahaha. NOT.

It’s very interesting to think about, because a common theme among parents of children with autism is the tragedy of not having our expectations met. We all have dreams. A lot of us feel like our dreams are shattered when we first hear the diagnosis. Visions of passing a football between father and son turn hazy. Maybe our handsome little lady killer won’t be dating much in high school. If he even gets to go to a regular high school. Milestones and rites of passages we never questioned before suddenly seem so impossible.

But how reasonable is it to make assumptions about the child we get to raise, anyway? How fair is that? I honestly think we spend a lot of time making ourselves sick over the “What might have beens” when we cannot even possibly KNOW what might have been. And more importantly, especially when we are looking at a younger child who is just coming into his or herself, are we really in a position to take guesses about what will NOT be?

These are all normal feelings, and they deserve to be acknowledged, and no one should invalidate them. I get a very emotional reaction when someone mentions the disappointment over dreams of the future for their children, because I’ve been there. But it is up to us as parents, for our sakes as well our children’s sakes, to gain a little perspective. We never get to know for sure what the future holds, and our children do not exist as extensions of ourselves, anyway. ALL of our children, typical or otherwise, are going to let us down from time to time, and are at times going to exceed our wildest expectations. Let us try to remind those who are new on their autism journey of this fact, and remember it for ourselves when we are down in the dumps.

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.

Negative Nancy's annoyed by Bissfully Ignorant People

I'm really irritated by ignorance right now.

It's not even personal ignorance, it's like anonymous ignorance, the ignorance of strangers, dumb things people say online, etc.

Usually I am not irritated by such things.

I mostly encourage the moms in my support group to have compassion for the people who make rude, but for the most part, innocent comments about how they are raising their children.

And yet, I'm just a little annoyed right now because I've been coincidentally bombarded with the wrongheaded notion that Good, Hardworking, Attentive Parenting yields Perfect children with no emotional/cognitive/behavioral issues at all. I'm not even really annoyed with the opposite axiom, that Bad, Lazy, Neglectful Parents are the only thing that would lead to a child that is uncontrollable, spastic, and behind in his developmental skills. I get that upon first look, a young mom with the style sense of a grungy teenager kinda gives a certain impression when her 2 year old makes a dart down the salad dressing isle, knocking over every bottle in the process. You are just wrong, and I know, and so really I laugh it off inside.

What's irking me RIGHT NOW is that people often talk as if... there is not a possibility of a child still being in diapers at 4 or 5. That everybody gets to have a conversation with their preschooler. You hear comments such as "How dare you put a child on a leash- be the parent! Teach them to stay put!" like all kids quickly understand and obey such a command. People talk like it's... always... so easy...

Rar. I'm annoyed with myself, I think I just realized that deep down this is kinda a bit of a pity party on my part. Maybe I'm even being a little smug. It's really unfair, and yet worth it, so I try not to dwell. But it's crazy how until days like this, I don't even realize- already, there is this big difference. My life is completely different than the life of your average mommy with a 2 year old. Everything is hard. And I don't mean that to whine, I mean, little fucking things are HARD. You know. You show a kid how to use a utensil, you give em a spoon, a fork, you show em, with practice, hey they use utensils! I literally had to stand behind him with every meal, using hand over hand, walking him through every motion. Every single time he wants something, there is a good chance it will take me several minutes to figure out what it is. We go from class to class, to therapy to therapy, to specialist to specialist... I send emails to his teachers, make calls to the insurance companies... respite care/daycare/relatives watching him for even a little while makes me nervous, because Wylie is unpredictable and hard to contain... and through all this chaos, some days Wylie offers NO affection, no words... he does not call out to me, he does not know my name... Do not misunderstand me. He brings me so much joy. But it occurs to me that this would be a whole different ball game if things were a little easier/calmer/safer and every day I was able to engage emotionally with my baby. I'm being honest and vulnerable here when I say sometimes I'm at work and I miss him soooo much, and then I get home, and I walk into the room he's in, and he won't even look away from what he is doing at me, and it breaks my heart.

...uh. Wow. I don't know how I got here. I didn't even know that was in me. I just... was really irritated by blissfully ignorant people. Goodnight.