Saturday, December 22, 2012
Okay, so, I’m Autism Mom again, with a new strategy.
Uhh. I don’t know. Look. My super power is “winging it” okay? So, I don’t know how valuable this super power is in regards to trying to raise an autistic son. But I honestly don’t know if I can take any other approach at this time.
The experts all have their opinions, and I value these opinions, like, crazy. I do. The most helpful people in my son’s life are just amazing. But we’re sorta at a stand still right this very moment, because the two people whose opinions I trust the most sorta think my son is “Good enough” developmentally, so to speak, and since I disagree, I have to sort of blaze my own trail as far as my next move is concerned.
So, here’s where we all stand:
Expert 1- My son’s former BCBA, and director of the school he attended. She doesn’t see IEPs in our future at all, and sees his ability to look to his peers as role models, high social motivation, and fairly age appropriate development across the board as a good sign that he will be able to make it in the real world without any special support. She’s in tune to the fact that I’m a bit of a nervous, yet, permissive parent, and with her super assertive nature, I bet she thinks some straight laced parenting would be all he needs in life to flourish.
Expert 2- My son’s preschool teacher. Dude, she has a fancy degree, and she seems to be able to apply that degree. She knows he’s falling behind his peers socially, and knows that because of his restricted interests, it’s been a challenge to get him to practice many preschool level skills, such as drawing, dressing himself, and using utensils while eating. Still, she thinks practice is the key to success, and doesn’t seem too worried about him overall.
Me – I am skeptical of the “practice makes perfect” approach to social skills. I wasn’t autistic. My language wasn’t delayed at all. My parents had waaaay more money than I do and I was in tons of activities, and was exposed to a LOT more social opportunities than my son, and still, my life was a friggen nightmare, man. In fact, I suspect that children who make inappropriate social attempts without being corrected (because ppl avoid conflict- many kids will just start avoiding an awkward kid, rather than correct their awkwardness) runs the risk of practicing bad social skills over and over agin.
At the same time, he seems to foster good relationships outside his peer group, and it’s worthy of noting! I’m not talking about a weird lil professor who only hangs out with adults, I’m saying, he gets along well with his tween cousins, and he usually finds a friend a few years older (6 or 7) at any place there are children. That being said, it’s very likely that I’m just not that familiar with the complexities of preschool age play, you know? So, uh, either way… I’m not comfortable with leaving it up to “practice.”
Also, I see a problem emerging (or possibly re-emerging.) He seems to be having more vocal stims, and they are very frequent. I see some “attending” issues on the horizon, and I do not know how to deal with them just yet, but I have some approaches in my head, so, not to worry.
And for now, my immediate action plan is to go a little broader, and just bring a little more structure and productivity in our lives. I’m finding it easier to take a lot of Temple Grandin’s advice to heart, when at one point, I think I found her advice a little on the vague side. She wasn’t being vague; she was being “broad.” Heh. I’ll follow up in detail, but for now, my approach is just to stay a little busier, and help him focus his abundance of energy on hands on projects that can serve as good practice for developmental skills. I think this will make it easier for ME as a parent to make sure he stays engaged, as well, as to avoid him spinning and humming in all of his free time.
I know, it’s not much of a plan. But I’m over planning too far in ahead at this point. This aint no game of chess! Okay, at least, I hope it isn’t. I suck so bad at chess.
Sunday, December 16, 2012
Perspective, man. Seeing where other people are coming from. Realizing that there is more than one way to do most things.
I think, like a LOT of parents, I look back on all the mistakes my parents made and I wanna learn from em. At the same time, in the back of my head, I know how this cliche plays out, generally. People overcompensate for their parent’s mistakes, find out their children don’t react exactly the same way they did to shit, anyway, and overlook some really important parts of the whole “raising children” process.
So, it’s not always easy to just “do what’s right.”
I’m on this whole new “self help skills” thing and high on my priority list right now is my child’s ability to be independent. I was totally crippled by infantilizing parents, and yet, it’s hard to immediately correct their mistakes in my own parenting style when I STILL have no idea what is expected from a young child, behavior wise. A few basic manners came about through THERAPY and it’s unbelievable how EASY and USEFUL simple etiquette can be, even for a three year old.
Then, you know, I get to the other side of it. Um. And that other side is making a big fucking deal about nothing.
I’m reading a book on how to help children with autism acquire self help skills. I was only a few pages in when I got sidetracked by my skepticism regarding the importance of some of these skills. Okay, if you explain it to me, I can see how chronic bed wetting may be a problem. If you start talking about real developmental milestones, and the physical capabilities of a child, then I can follow the logic. In the grand scheme of things, I think bedwetting even quite late into childhood isn’t that big o’ deal, but I feel comfortable with the idea of night training a capable child.
Start talking to me about the importance of coordinating outfits, however, and I start feeling pretty judgey and contemptuous.
Seriously. A mere handful of pages into this book on self help skills, the author is talking about the IMPORTANCE of “coordinating clothing and choosing clothing consistent with age and community norms.” And I am not trying to just pull this completely out of context- be aware that this is a descriptor of advanced skills, I guess, and maybe there is some implied context about how unawareness of social norms can be debilitating, even if these norms are totally arbitrary. Within context, I still find this a little fucked up.
I say this as someone who was really clueless about clothes growing up and in hindsight, that shit really negatively impacted my life. It was just one more thing to alienate me from my conformist classmates.
And you wanna know something?? I STILL don’t really know any better. I dated a guy in my 20s who would say “Noo…” in this condescending way if he saw me reach for two mismatched socks. I seriously wore mismatched shoes until my kid started preschool, and then I didn’t wanna alienate HIM, ha. I work in RETAIL and we sell apparel. People ask me what goes with shit. Here’s a sales tip- everything goes with everything! There. If the people asking you know any better… well, shit. Why are they asking you? Who is the foolish one, here? Haha.
It’s not a functional skill. Sorry. It’s this, like, supplemental, very acquired skill that has jack shit to do with development. Don’t wear a garbage bag or a ratty t-shirt to a job interview or a date. Okay? IF you’re trying to sell yourself, dress to impress. But really, you shouldn’t be constantly trying to sell yourself. I didn’t learn the importance of interview appropriate attire until I was in my 20s. Teach that. I shouldn’t be reading about trendy clothing in a book I got for help with my autistic three year old.
Is my opinion based on some sort of anti-intellectual, “I struggled with that and I turned out fine” sort of mentality?? Hard to say. It’s this paradox we all experience, but parents have to FACE it all the time:
All the most important lessons in life are learned the hard way.
We are shaped by the pain we endure in life. We learn from our mistakes. I have forgotten how hard it is to be a child and my stomach turns at the thought of my child having to go through all that. So I strive to prepare him for life, so that he has it easier. But what easy lessons from my childhood am I taking for granted? What guarantee can I give that my guidance will be any better than previous generations? I think my parents reeled from harsh, volatile, totalitarian parents and didn’t realize they had to replace beatings with some other form of discipline. I think I take for granted how my parents strove to remain calm and collected around me, and I often wear my emotion on my sleeve in front of a sensitive preschooler.
I want to learn from my parents mistakes. They thought they were raising a “free spirit” and there were all these unforeseen consequences. At the same time, I’m kinda, like, this free spirit. Ha.
Often times I second guess my parenting decisions, and the mental pressure can be a little overwhelming. We don’t wanna screw up our kids with our mistakes, but reality is, “it’s gonna happen.” It’s only a question of “how” and “to what degree” n stuff.
(Shrug)What's a parent to do?
Monday, December 10, 2012
Feeling a lot more like Autism Mom these days.
I had a parent meeting with my son’s teacher. She seems to be a nice enough woman, and I was impressed with her insight. Disheartened to realize her insight far surpassed mine, and that I was a bit unaware of how my son struggles and that I haven’t been communicating with the staff very effectively. Yeah, maybe I blindsided these very competent professionals by sticking an autistic child in their class without any, you know, hints or cheats on how to deal with him. I don’t know though. I feel like… perhaps… I needed to rule out the idea that, armed with some foundational skills, he could just follow a normal developmental trajectory from here on out, or something, I don’t know. I don’t know.
Ehhh. I’m having a hard time fully processing our first parent/teacher conference. The day before a staff member at his school had made a remark about my son being in special ed. Since my son is NOT in special ed and I haven’t even disclosed any sort of diagnosis with them, I was alarmed. I was suddenly very afraid that my son was very behind all his peers and nobody cared because this was just a little supplement to his special ed. So I wasn’t in a very clear frame of mind when this meeting took place, and I braced myself for gloom and doom when his teacher turned the subject to “areas of focus.”
So now I am not quite sure how much emotion and misinterpreted connotation might be wrapped up in what I actually heard her say. Nothing was very surprising on a factual level—it doesn’t surprise me that sometimes he is unresponsive to questions, especially regarding abstract subject matter. I could tell from the birthday party he attended recently that his peers talk a lot more and use more complex sentence structure. I also know that he is nice and incredibly friendly, and sociable, sooo… you know. He will learn from his peers and start to catch up??
The teacher gave me some insight that made me think that maybe it won’t be that simple. Perhaps I’ve been assuming that because he can talk, and because he has tenacity for overcoming communication barriers, he must be doing all right, socially. The teacher even agreed that he gets along with everyone just fine and all the children are friendly with him. But he isn’t forming very meaningful relationships with these kids because he cannot sustain interactions with them. He is quick to escape any situation that is uncomfortable. I’ve made some sort of presumptuous connection here that led to a wrong conclusion. I have a bright, socially motivated little boy who has enough language and self care skills to get along just fine in regular preschool. That does not mean that he will easily keep pace socially with his peers. And I KNEW that, but I guess I thought at the preschool level, it wouldn’t be a problem. And now I’m like, “Aw, shit, do we need to stick him back into therapy??”
That’s something to think about, but it’s also clear that he has benefited from his time so far at this school. I still see a child making steady progress, and on top of that, he’s practicing a bunch of school related skills with real live typical peers. So, you know, in the long run, when he’s entering kindergarten a year and a half from now, with 2 years of intensive therapy and an additional 2 years of educational and social experience… then how will he fare, compared to other students? What kind of troubles will he have, then?
I suppose the answer is, “Well, who the hell knows. Fucking duh.”
Well. I just have some things to think about. I have to figure out just exactly how much time and money and emotion I need to invest in things additional to his hours in this preschool. I have to figure out what exactly to do with these investments. Do I contact the school district to set up an assessment? Maybe I call his developmental pediatrician? Is an assessment even top priority now??
And honestly, should my focus be on my son’s issues right now? How much of the problem may just be on the parental end? I mean, I really need to get my shit together. I ruled at figuring out my kid’s diagnosis. I RULED at quickly figuring out a plan of action and getting him into therapy. I ruled at keeping a good head. I don’t know that I rule at being a parent with clear and consistent boundaries and expectations. I don’t know that I rule at planning several steps ahead, and being fully prepared when new problems emerge. Without the structure of therapy appointments, it’s like I’m slipping into this laissez faire style parenting, and it’s easy to feel positive about it because I’m a free spirit and my son’s a free spirit… but he’s a free spirit without any framework to work with, you know? He has a hard time regulating his emotions. Typical behavior doesn’t always come naturally to him. He needs some guidance, or life’s gonna kick his ass. Oh, man.
All right. I’ll sleep on that, for now.
Saturday, November 3, 2012
Well, anywho. Halloween is over. On to Thanksgiving. On to Christmas. The Retail Shuffle. Feast or famine?? We will have to wait and see!
Wylie had a marvelous Halloween! His cartoon shows have been playing Halloween episodes since September, and he had been asking me to take him trick or treating daily for a while now. About a month ago, I started asking him what he wanted to be for Halloween. I didn’t know if he’d answer. I didn’t know if he knew what I was talking about. I didn’t know that he would care what he wanted to be even if he understood me. But eventually he settled on a ninja costume, and he picked the most gruesome ninja costume he could have possibly picked. In the beginning of October, we bought some pumpkins to decorate our front porch, and Wylie was impatient about cutting into them. When the time finally came, he insisted on Happy pumpkin faces, not scary. He heard this on Agent Oso, but he wasn’t exactly scripting. He had just created this personal narration about Halloween based on observations and context clues. Friggen genius. And he’s so confident in his ability to assess the “sitch.” It’s really gonna be funny when he’s a teenager and his arrogance gets him burned, but for now, yeeeah! Way to believe in yourself, Son. You da man.
When the actual day came, I donned my spunkiest costume EVER, and this still consisted of a half assed witch hat and some funky witch shoe covers over my Chucks. It was awesome and fun, anyway. The plan was simple- I would take my son trick or treating in our neighborhood until my hubby got home from work, when we would hit up his parents’ neighborhood. It’s tradish. Hehe.
I talked to Wylie about the game plan. “All right, Wylie, so, you’re gonna knock on the door, and then when they open the door, you say, ‘Trick or Treat!’ and then you get your candy, and you say, ‘Thank you!’ and then ‘Happy Halloween!’” I was really excited about the script, actually. Last Halloween, Wylie was largely unintelligible in his speech and his responsiveness was hit or miss. And, you know, he was two, and it didn’t make for any awkwardness or apprehension, and it wasn’t a big deal, but it’s still exciting to engage in slightly more meaningful ritualism, now that Wylie kinda “gets” Halloween, for real.
He did well. I mean, it’s hard to fuck up Halloween, but still, he did well! And many times, you could tell he became overwhelmed by his senses. And he would just freeze. Not in terror, and for that, you know, we’re grateful. He just had to deal with his sensory input right quick.
He flipped his shit once when he knocked on a door that went unanswered. That was some bulllshit, anway, but I suppose it’s all in good pranking fun to have your entire house decorated and all your friggen lights on, just to psych out little kids (little autistic kids, at that). Well played, Neighborino. Well played.
He got kinda ticked off when people were posted outside with candy. Didn’t fit into his personal narrative, I’d guess. A couple times he would tell the neighbor, “I go ring the door, and you give me candy, at the door.” After a few times of this request being denied, he huffed and asked to go home. I shrugged and we headed home. I was just, you know, being laid back on Halloween, but Wylie figured I called his bluff. He immediately asked to go back out, and from then on, he accepted candy handed out in front yards without an argument.
When my husband got home, we headed over to my in laws, and the Halloween spirit was strong in my little one. He’s usually fairly behaved at his grandparents’ house, but this time, upon arrival, he began juggling the antique knick knacks. His grandmother shooed him out the door.
On to more Trick or Treating! He didn’t always get the script exactly as we practiced. Sometimes he didn’t say anything. Sometimes he was a little imposing. Oftentimes he asked to go inside and hang out. This ONE lady made the mistake of saying he “could have anything he wanted. What do you want??”
His response? “Your piano.” Well, really. Whose fault was that? We laughed it off, and it was obvious he felt a genuine sense of injustice when he insisted, “But! I want to play the piano!” But he’s three, and adorable, so, we laughed at his expense some more, before I encouraged him to accept some M&Ms with grace. He did. Rockin’.
Anyway, we went back to show his grandparents his loot, and then we headed home. He wasn’t the least bit interested in his candy that night, but I think he psyched me out. He was sooo uninterested, I left his little pumpkin bucket within arms reach, and then tonight I caught him helping himself to lollypops and tootsie rolls. Well played, Son. Well played.
The next morning, he asked to go Trick or Treating, “one more time.” I explained, you know, it’s this annual event, and he’d have to wait. He then asked to go to Africa.
Okay. Right on! Happy Halloween!
Friday, November 2, 2012
Um. My favorite holiday. Hands down. Which is funny, because, my entire life, I have phoned in my costumes. Yuh. I don’t think I’ve ever put too much thought into what I was going to wear for Halloween. But I love me some Halloween because it’s all about pranks, and candy, and partying, and shenanigans.
I think my foreign friends overthink Halloween, but I am going to try very hard not to judge or mock. But, I mean, seriously. The whole entire point of Halloween is, like, not bein’ too uptight. (Fake frenemy smile) Love you…
But anywho. Halloween. This is Wylie’s… 4th Halloween? Right? In 2009, he was a dragon. He was 9 months old and walking. In 2010… he was a…skeleton. It was an ill fitting costume. 2011 he was Buzz Lightyear, and he was friggen adorable, and very happy to be Buzz. So this was the 4th Halloween, and this year, he was a zombie ninja.
YEAH. Ha, ha. A ZOMBIE NINJA. With a bloody ninja star protruding out of his head. YEAH! I know, like, gee, do I want a cookie or something for bein’ edgy?
Uh, yeah. Cuz, wtf. Cuz costume taboos are kinda lame, and people get serious about them. I think there is a pretty good reason to reject slutty, sexual costumes for prepubescents. Other than that, um, I think you’re overthinking Halloween again.
Um. And I feel the need to express an unpopular opinion here about manners and respectful conduct. Um. While I have learned a LOT in my adult life about the value of politeness, and social reciprocity, and the like, I still think there is something inherently wrongheaded about prioritizing Not Making Transgressions over Forgiving Transgressions, social or otherwise, but we will stick to social ones in this context. I believe people often put a HUGE burden on others not to BOTHER them, when, really, it goes AGAINST the value of cooperation, the value of compromise, and the value of, you know, learning to be an adult, and dealing with inconveniences.
And I mean that in general, but yeah, the topic of Halloween got me thinkin’ about it. I just cannot imagine the value of being upset about an underdressed child on your doorstep on Halloween. Really. I really don’t see the slight.
And, you know, this gets me thinking about the whoooole argument that, “We all need to be a little more compassionate when it comes to rude little assholes, because they may just have a disability.” I think this is an awesome thing to point out, and all, but at what point do we say, “Um, have more compassion. Period.”?? At what point do we say that part of being out in public and being part of society is accepting that people may behave in a way we personally find distasteful, or even downright wrong? At what point do we say that waiting around for people to behave the way YOU personally see fit is far more imposing than exposing someone to behavior they may find distasteful- just by being in close proximity to them??
I could go on and on. Believe it or not, I’ve barely set the soapbox down, much less climbed up on top of it, yet. But I didn’t even really mean to go there, honestly, and it’s a little ironic to get, like, seriously outraged because other people get outraged too much, so. I gotta lose the passion, and the train of thought, for now. Much love!