Wednesday, December 21, 2011

Happy Holidays

Wylie has been off for his winter break, and we have been really just goofing around.

I completely forgot to register for my college courses for next year. Yuh. It just slipped my mind. I often just feel like I’m slipping in quicksand. No time for this; no time for that. I’ve NEVER failed to get into the holiday spirit like this, before. Everything has seemed like impossible work. Pssh.

Wylie is fine. Out of all the things on my mind right now, I’m not too worried about him right now. He’s a happy kid. He just brightens my day. And when he’s sad, it’s like the whole world comes crumbling down. He has this wail that is, like, kryptonite to me. But, boy, does my boy remind me of me! Intense, but not chronic. I get it. Short outbursts are something I’m familiar with.

We went shopping for Christmas presents the other day and he was a bit of a pain, but,  it’d be dishonest to say he was any worse than any other 2 year old at a crowded Walmart at 10 in the evening.  I loved it. It was a relief to be spared the dirty looks as I basically ignored his sobfests over some Cars action figures I made him leave behind. At one point, however, he spotted a baby and had a bit of a one-track mind after that. He kept calling out to this little girl, even after we had long passed the aisle she was in. “BABY! BABY! Baby, where are you?” Some couple passed me and I heard the dad whisper, “Oh, please don’t say baby one more time.” Haha, but we got him back good when, an hour or so later, we were in the checkout line together, and he overheard my husband say “And you want another one??” in response to them totally losing control of their two children. Honestly, we were both kinda rude, and both deserve to be forgiven. Tis the season, right??

A few days later, my hubby and I took him over to our in-laws to celebrate Christmas. Everybody was very impressed with Wylie. My mother in law just gushed about him, as he ran amok with his cousins, having a good ole time. He just laughed and laughed as he played. “He’s talking so much more!” “He’s such a happy kid!” “It’s like night and day!” they all said. Stereotypes aside, they have a point. A year ago at this event, Wylie was a total disaster. His little cousin enraged him by being too “in-your-face” for him to handle, and he hovered around the door waiting for someone to take him home. Wylie didn’t listen; he wasn’t able to handle the amount of people, or the attention he was getting; he was pretty miserable.

I know the school has made a world of difference. It’s like he has discovered how fun kids can be. Heh. He talks so much more, now. I’ll be shocked when he busts out with full sentences. “No, I don’t want to!” he shouts when I ask him to “come here”.  “I want bubbles, please! Yay, we’re doing bubbles!” There is still a lot of echolalia mixed with his jargon- “Oh, mmm, doogoo bada want to see the fish!” from American Tail. “The baby’s coming! The baby’s coming!” from Ice Age 3. “No, don’t bite! Mm mm!” from, I guess, whoever he tried to bite, hahaha! I’m so proud of him. And I am very happy with the direction he has taken with his ABA. When I began there, I wanted very strict, very formal one on one programs. When he started working with other children, I was not impressed at first. When he started his preschool, I worried about him losing the attention he needed to thrive. But learning how to cooperate with others has been such a good thing in his life. He has been so happy.

Wylie is fast approaching his 3rd birthday. I think my family basically thought by this time he would be ready for regular ed, and pretty much fine, hahaha. Barely autistic or something. I really think at some time in the future I may have to find an occupational therapist, and we haven’t mastered a significant amount of his ABA programs… his language is still quite delayed. But, I’m gonna say this. Wylie’s a sneaky little thing, and I’m often surprised at what he knows. He has a good attitude. Frankly, he’s a chip off the old block. I may have, at one point, expected this to be easier than it actually is; but I think I’ve grown stronger than I thought I could be a year ago.

 Wishing everybody happiness.

Monday, December 12, 2011

Completed Semester! ...What now?

Once again, feeling a little unprepared.
                Arrrrgh. I don’t know. I was not made for morning shifts. No, I don’t feel like I have the rest of the day to get everything done. I feel like I get off work and it’s a few hours until I have to go back again.
                Particularly frustrating when I feel like I’ve missed the mark when it comes to communication with Wylie’s school. Oh dear. So I thought his pre-preschool semester ended when his whole ABA school took a winter break. Found out a day before it ended that I was wrong and it ended a week BEFORE the break. And I, true to my very nature, felt slapped in the face by my own procrastination. (Shit). Yeah. Okay. What now??
                To catch everybody up, Wylie just completed 3 months of a pre-preschool program, specifically designed for children who are ready to transition into a classroom setting. This doesn’t necessarily only encompass “high functioning” “aspies”—some children in the class are bound for straight up regular ed, and some children have just been doing the ABA thing for a while and it’s time for a chance to figure out some new accommodations. Wylie, I’ve been assured, is Super Advanced. Maybe not even autistic, haha.
                But Wylie isn’t exactly ready for school. He talks in jargon more than actual words. His self sufficiency skills are a little behind—potty training and getting dressed are skills we haven’t really tackled yet. He’s not a stickler for routine, but transitions are still likely to leave him unfocused.
                He has gained some important skills and experience during this semester of school. He’s 2 years old, and he’s doing a full 7 hour day at school. Um, amazing? I think so. And he LOVES it. He loves the other kids. His social skills aren’t perfect by any means, but his social interest is encouraging. And there is no doubt that he is at like kindergarten level academics now. The actual SCHOOL stuff is a piece of cake for him. As much as I know about autism (which, you know, is a lot, but I’m a mom and not an expert) I find it incredibly bizarre that language still escapes him. Yes, I admit it, it’s harder and harder for my feeble brain to wrap my head around uneven skill development. I get that it exists. I get that the brain has all these different pathways n stuff. But watching it in real life still makes my own brain hurt. Were ya thinkin about speaking any time soon, Baby???
                Anyway. The semester is over. The semester was granted to us. We cannot afford the 2nd semester. No way. I was pretty resigned to max out my credit card for it—after all, how many semesters could he need?? He’s so smart, after all. But after a Family Discussion, I’ve been persuaded. I haven’t been strong armed, I’ve been thoroughly persuaded—maxing out credit cards is sort of a desperate act. We might find ourselves needing that safety net. And I would do anything for my child, but when you are poor and your child may need long term expensive services, you gotta sorta prioritize. I want him there SO BAD. Thinking about it just makes me cry. It’s almost an ideal situation. But I guess I can’t put all my eggs in one basket for “almost.”
                So I have a few options to pursue. I can awkwardly beg for more kindness and charity when I’ve already been blessed with so much. And let me tell you—I will. I don’t expect any. It’s too much to ask for. But it’s not for me so I have to ask. There are private preschools to look into. There is the public school system—he turns 3 soon, and technically I’m sure he still has an IEP from ECI 0-3. I’m not sure. A little apprehensive, tho.

Tuesday, November 29, 2011

Beg Your Pardon??

               Someone has been letting my son get away with some B.S. lately. Wylie’s language is, many experts tell me, “coming along just fine,” and I’m inclined to agree with the general consensus. The complex structure of sentences is eluding him, but he’s closing in, so to speak. He will string a few words together here and there, but I am most likely to hear a sentence in the form of a request, which is a program he is working on in school. He has been working on being polite, I guess, and “please” was added at the end of a standard “I want (blank)” recently. He was getting it perfect. “I want juice, please.” “I want Toy Story, please.” “I want upstairs, please.” Buahahaha. Gotta love the dog train method. Pretty darn polite 2 year old.
                Except, at some point, he started saying “I want juice, bee bee.” Or maybe “baby.” I want juice, baby”? Bee bee or baby. Hard to tell. But it’s WRONG! And I tell him. I model. He stops listening at some point and repeats his own mistake. Okay, okay. Totally unfair. He had an ear infection. As did his mommy. Did you know something? They aint kidding when they say that stuff can significantly impair your hearing. People gave up on me. “WHA?” every few minutes. Felt like my head was sandwiched between two conch shells. I could hear the ocean!! Ugh. So I suppose his hearing could be bothering him, he could just be off his game from being sick, I don’t know. My suspicion, tho, is some therapist is mishearing him and allowing him to get away with that.
                I don’t really know. My “super woman” routine is totally catching up to me. Yeah, I know, a little arrogant to even suggest my behavior could even remotely pass for a super woman routine, even if such routine was a farce. But I gotta say, I was riding a high for a while. Am I on solid ground? …Nah, but I’m young, and I’m getting there. Rocking the 2nd year back in college, a new promotion complete with little minions to do my bidding, all while doing the whole “motherhood” thing. Not even your average motherhood thing, I was like thrown into Advanced Placement Motherhood and told to sink or swim, and I actually learned to swim. Then, I dunno, all it took was a couple bad weeks and a bout of strep to turn me from an Honor-Roll-Student to Ah-Shit-I’m-Barely-Passing and from Ms.-Up-and-Comer to Ms.-Hardly-Reliable. And as far as Mother-of-the-Year? Umm… Can you guess what the chances are of me claiming THAT title any time soon?
                I don’t have his damn notebook. It’s at school. I don’t know what little college student is letting him get away with “I want Cheetos, bee bee!” cuz I can’t see who keeps giving him 100% the day before someone else gives him a 0. And tonight sorta descended into some weird, twisted example of what would be a baaaad way to implement “No-no-show” as Wylie and I argued over every little thing he wanted tonight.
                “I want toy, bee bee.”
                “No. ‘I want toy, please.’”
                “I want toy, bee b—”
                “NO, ‘I want toy, please.’”
                “Well, Wylie—”
                (Louder sobs)
                “Shhh, hey. What do you want?”
                “I want toy, bee bee?”
                So, tomorrow I have off. I’ll drop him off at school and probably come back home and wrap up some of my coursework; the semester ends, in, well. Uh. Soon. A few days? A few weeks? I’ll pick him up in the afternoon and hopefully I’ll see his lead therapist; either way I’ll get his notebook. I’m not too worried about it in the grand scheme of things, but I think it’s probably good to be a little proactive.

                I don’t know. In many ways, I worry less and less about him as time goes on. Yeah, I’m a mom, and I’m going to worry, but I have a lot of confidence in my son as I get to know him better and better as he grows up. And he’s just a little one, still. In other ways it is becoming clear I had some pretty high, possibly unrealistic expectations of where we would be a year from the beginning of  our journey. I’ve had to face the fact that any “sink or swim” tactics in regards to my child will probably not work out as well as I would wish. He still has a lot of growing to do in his pre-preschool—the idea of just throwing him into a regular old preschool and not disclosing his diagnosis kinda seems silly at this point. Not absurd—but a little silly. I was having lunch with my dad the other day, with Wylie, and we talked about potty training. It’s kind of funny to think of the judgmental me from 2 years ago, snorting at the idea of a 3 year old in diapers. I expressed to my dad that I still thought I’d try again with Wylie after the holiday season, right around his 3rd birthday coming up. My dad—who is a “high expectations” kinda guy, but always rather reasonable about it—said, “I don’t know if he’s really ready. You could try.”
                “You don’t think so?? He catches on pretty quick, don’t you think? He’s a smart cookie.”
                “Yeah… but we’re still having communication issues, you know what I mean? He still has issues with his clothes. I don’t know if he’s ready. But yeah, I think you could try.”
                I knew what he meant. Wylie is still a little behind. Still think we can conquer potty training, tho! One day. Eventually. Shooting for next year. Sometime.
                All in all, things are okay over here. Life isn’t a rose garden, but then again, no one promised us one. (shrug)

Friday, November 18, 2011

Autism Community Collectivism Finally Made Me Snap

                I’m a libertarian. I don’t buy into the majority-minority us versus them paradigm. Like, at all. I don’t think words have as much power as actions and I’m not going to be joining any cause to ban the “R” word any time soon. I don’t think free speech should be curbed in any way, shape, or form. I think we should rely on charity over the government for financial help in an emergency.  These traits and beliefs I possess are essential to who I am. They also make for awkward conversations within the autism community.
                Like when Sam Harris made some kinda odd statements about how Objectionism is like Autism. And all the autists were offended by being compared to Objectionists. Well. Gee. Ayn Rand was definitely a flawed woman, but she changed my freaking life with her philosophies on free trade, self esteem, personal responsibility and personal achievement. So I was a little offended at everyone being offended by Sam’s comparison, although people were mostly right to assume he was using the word “autism” when he MEANT “narcissism” (I’m not really sure what a neuroscientist does or studies, since he seems a little clueless about neurological issues such as “autism” and “narcissism” but whatever…) I bit my tongue on that one, because my political philosophies were hardly the point when what we were talking about was respect (although maybe the narcissists, who are just as biologically preconditioned to be narcissistic as autists are preconditioned to be autistic, would also object to us having a hissy fit over the comparison. But that’s a little philosophical for here, I guess.)
                There was the time I got into an unintentional argument with an autist who publicly denounced a pretty benign post by a parent of autistic children when I asked  just what was so offensive about what she wrote. Instead of an explanation, I was told that “If I couldn’t see what was wrong with it, then I am probably part of the privileged group that is so confident of its utter superiority that it’s invisible to you when someone writes about adults with autism with contempt.” Someone quickly chimed in to explain that I was lacking common courtesy and decency by not treating those with autism as if they are in a protected class, and not treading lightly enough so as to avoid any hurt feelings. Hmm. Just… asking… a question… that’s all… treating everybody as an individual with equal footing is obviously not the goal of acceptance??
                Most recently, however, I got a lil riled up about some anti-treatment bullshit on the Thinking Person’s Guide to Autism. Listen. Come to me with some facts about why you hate ABA. Come to me with a reasonable anecdote. Tell me it’s your choice for your child, and you choose to stay away from the strongly structured, therapist-directed approach of ABA in favor for something else. For sure, I’ve read studies that pretty much suggest ANY intensive (several hours a day/several days a week) behaviorally based (conventional learning, Floortime, Early Start Denver Model) approach to teaching children with autism seems to have wonderful effects. Temple Grandin is right that it basically boils down to “The worst thing you can do is let your toddler veg out in front of the TV all day.” But when I hear criticism of empirically tested methods of ABA with absolutely no backing, expect me to speak out. And when the anti-treatment argument finally boils down to a clear misunderstanding of the role of a parent (and the role of a child) in the parent-child relationship, I think my rebuttal, inarticulate as it may be, is pretty relevant to the conversation. Parents ARE the boss of children. If adult children cannot function alone in society, sometimes parents will continue to be the boss of adult children. It’s not a human rights issue. It’s a biological issue.
                So, I guess I am a little unsure how to proceed from here. I’m getting bored with the walking-on-eggshells routine. I suppose I’m not popular enough to worry too much about losing my audience, heh.  I don’t mean to come off argumentative just because I’m outspoken, but (shrug) so be it. Much love to everyone—I have no hate in my heart. Always up for a debate and I am pretty open to new ideas, but I grow weary of those who want to scold me for having a different opinion.

Wednesday, September 21, 2011

Preschool Challenges or How to Pack a Lunch for a Picky Eater

                Wylie has been in a preschool preparation program for a little over a week now. I just dropped him off about an hour ago.

                He really seems to enjoy it! When I drop him off, he seems to be in a good mood. One aide even mentioned that he seems so happy in the morning. The poor thing has had to quit napping cold turkey, but he gets about 25 minutes of sleep on the way home, haha.

                I am so grateful for the opportunity to face some real world challenges NOW, while we have an understanding staff who “gets it.” Wylie is such a bright little boy, but it is such a useful reality check to see him around peers who possess more skills than he. I don’t like to throw around the word “high functioning,” but these are children who have minimal behavior issues and have gained a lot of skills through therapy. Wylie is about “middle of the road” in this group, with some children ahead of him and a few with a few less skills, but I think he is a little on the young side, not yet being 3.

                It’s weird the things I suddenly feel weird about. They actually changed their sheets to reflect that “some of the kids are not yet potty trained.” Err. I am probably paranoid, but is my son, like, the only “some”? Logically, I know I need to snap out of the comparison game, anyway, but I’m glad I am dealing with it NOW (you can’t help your feelings, but you can try to change your perspective) than dealing with it when I thrust him in a regular preschool and try to play “sink or swim” with the neurotypical children, heh.

                The hardest thing for ME so far has been something I didn’t anticipate as being a big challenge at first: packing a lunch. WOW. Preschool lunch for a picky eater is, like, terrifying; absolutely terrifying. They won’t heat anything up and his spoon and fork skills are uh. Ya, he’s behind, I’d say, haha. Sooo, yeah, the first week, I didn’t really fight it. I knew I had to come up with a solution, but his lunch sorta screamed “A bad mom packed this load of crap” in that first week. We are talking, uh, crackers. Chips. Mini muffins. HAHA! Well! Jeez luise, the kid lives off chicken nuggets, grilled cheeses, and fishsticks. He eats yogurt and pears, too, but we were asked to join this program with such short notice that I had to wait until I had a day off to go grab him some insolated lunch bag (and wasn’t there just recently some fear mongering study that suggested these things are crap??) Well. I finally got an insulated bag with several ice packs and threw some crap in there I’m not sure he will eat, but hey, they have aides and therapists and a speech therapist who does feeding therapy, so maybe I can weasel out of fixing these picky habits myself, haha. Upon talking to my mom about it to see what she thinks, she responded “Yeah, dude, we totally tricked some daycare into potty training you, I’m for it.” Haha. And then on Monday this week they sent a note home saying essentially the same thing, that we should try foods even if they reject it at home, and it’s something they will work on.

                Either way, my fears have subsided. He doesn’t seem to come home grumpy or starving, eats well when he gets here (I mean, in comparison. Haha. Fishsticks aren’t exactly health food), and he doesn’t seem traumatized. I get reports about what they do all day (although they are a little light on explaining his level of participation… grr…) and I’m SURE he’s enjoying the YOGA class they have going, tee hee. I’m so happy. I’m so grateful. My baby’s doing okay.

                I cannot get complacent, though. He has kind of been reminding me of the hare in the tortoise in the hare (although not LAZY, he works incredibly hard) in that he was so ahead at a year and a half and now there are a lot of kiddos surpassing him. Again, I need to stop. Really. I need to stop comparing because it isn’t fair to anyone. I just need to make sure I’M never the hare, and I never get complacent just because he is a bright boy. I know parents make mistakes… but I hope I always do right by him.

Thursday, September 8, 2011

Unexpected: Good Weather and Pre-Preschool!

I’ve been having a bit of a fantastic week.

I took my last vacation of the year before the retail season heats up (hopefully!! Tough few years for the US…) and it has been pretty peachy. The temperature has dropped dramatically in Texas, where we have set a few records this summer, and I’ve been able to go outside!!


Which is good, because Wylie is a trip. Wouldn’t you know, this Gamer Nerd Mom with a severe vitamin D deficiency because of her insistence on living like a character on Twilight would have a NATURE loving autistic son. Haha! You didn’t wanna play video games, Wylie?? No?? Okay. Haha, I’m just teasing, stereotypes are lame… But Wylie loves him some nature. We went to the park today and he just wanted to… hike. I wanted to, you know, play on the swings, or climb… no, we went on a hike. I’m really scared of bugs. And they are pretty big in Texas.

We have been swimming a lot. Actually, Wylie gets more autistic when we are swimming. It’s kinda strange how many people tell me that when they take their children on the spectrum swimming, their children are more likely to talk and make eye contact… I hear this a lot, but it’s not so with Wylie. It may be he is just reacting to MY behavior… he’s TWO, so you can imagine I hold him, and I’m VERY paranoid about not noticing his face going under, so I sorta lock onto his face in the pool. It may just freak him out, because I haven’t seen him have an eye contact AVERSION for several months. He does like the water, though.

He has been doing incredibly well. He has started to take a more active role in dressing himself. He has tried foods on my insistence… poor baby can’t stand peanut butter, but he gave it a try twice. I’m very proud of him. He rolled a ball back and forth to me- the first time we’ve ever played anything resembling catch.

A few days ago, the executive director who runs his school asked to have a meeting with me about his schedule. I felt like it sounded like something big, so I pulled the hubby along. Sure enough, she had some heavy stuff to lay down on us.

“You know how we talked about preschool a few months back? Have you given any more thought to it?” she begins.

Well, yeah. Actually, I have. I have been doing a lot to see if I could sort of prepare him for preschool. We’ve worked on numbers, and letters, and colors. We’ve practiced reading and listening and sitting. I’ve researched the nearby preschools (there are some fancy ones nearby and I’m being a bit of a snob. Which is completely irresponsible of me because I’m broke as shit.) I tell her.

“Well, we are starting a new program here, a sort of ‘pre’ preschool. It will be taught by an actual preschool teacher with the object of placing children in the real world school system after they graduate here.” She goes over what sounds like a pretty intensive program- all day, 9 to 4, with a social lunch break and actual subjects like math and Spanish and yoga… Some pretty fancy stuff, here. None of my snooty preschools were THIS fancy. She continues.

“We will be using ABA methods, and everyone will start with a one on one aide, and then we will fade those aides when we can throughout the semester. There will be a huge emphasis on language development and social skills with the other kids. There are some older girls with more skills I think he can learn from. We will do a readiness assessment at the beginning and then at the end of the 12 week semester.”

Now, as exciting as this is, it sounded um. Incredibly expensive. And it was. I mean, REALLY expensive. And then she says:

“I think this is what is right for Wylie. He doesn’t need to be here forever. He does SO well and he is SO bright. That’s why we will give him a grant for his tuition and we will pay it in full.”

I’m crying right now, just as I cried that day. I stammer, “That’s incredibly generous…” through tears and subdued sobs. She shrugs it off. “It’s the right thing to do. I expect him just to surpass everyone else, really. Either way, we’ll know what his strengths and issues are and we’ll have an idea about a good placement for him for next year.”

I am so excited! A little scared. It’s a long day for Wylie. But he just has this personality, man. He doesn’t necessarily need ABA DTT drills all day, but he needs to be engaged. He is just too laid back and a little aloof. He doesn’t get to spend a lot of time with other kiddos.  I think this will be a great experience for him. We will see how it goes—it starts next week! Thumbs up!

Wednesday, August 24, 2011

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.

Thursday, July 28, 2011

The Reason I Write

When it first became obvious to me that my son had autism, I really was not all that familiar with the condition. I knew one of my cousins had an autistic child, and I suspected that another cousin’s son was autistic, mostly because he was 3 and did not speak a word. I knew my own son was autistic because I happened to read an article about the fairly recently discovered info on the earliest signs of autism, along with witnessing the more obvious and commonly known sign of language regression. But I was pretty ignorant about what “autism” meant for my son.

My experience with autism up until this point had been Lifetime Movies, which made autism seem haunting, creepy, and mysterious, along with absolutely crippling, and devastating to the family. I also had a neighbor with an autistic toddler when I was thirteen- I would watch her 6 year old inside the house for a couple bucks an hour while she worked with her 2 year old. I remember the visual schedules around the house, and the PECS icons. The children’s mother was a very polite, cheerful young woman who worked diligently with her younger son, and was very concerned about her older boy getting enough attention. We played video games and played outside. I remember asking my father about autism. “It’s a terrible disease,” he whispered, I think feeling sad for the mother. “The children just… they can’t show love. They don’t know how. It must be very sad all the time.” These words came flooding back to me when I realized this “terrible disease” “afflicted” my son. I was incredibly depressed and actually pretty horrified and scared at all times for about a month.  I remember no one believing me about what I knew- that he was autistic- and so the whole time between when I knew and the diagnosis, I feared a second wave of grief starting all over again as I had to deal with my family’s realization and sadness. I wasn’t looking forward to it.

Despite his words eleven years earlier, my dad was the one who urged me to snap out of my depression. “There is nothing wrong with your son,” he said, firmly. “Even if he has autism, he’s a nice little boy and we like him.”

The only thing that kept me sane during this time was reading everything I could get my hands on. I’d like to say I was grounded by my interactions with Wylie, but realistically, I was hurt and confused, and often would do nutty things like get frustrated with him and try to yank his chin up to force eye contact. I would fall apart in front of him, and when he wouldn’t react to my outbursts they would turn into all out tantrums.

Everything I would read would sound… hopeless. Honestly. Over and over again, prognosis was variable, but pretty much, this was a “lifelong disability.” If you have no experience with disability, you don’t really see that this can still mean “a fulfilling, happy, healthy life.” You just see tragedy.

Most personal accounts I read on the net didn’t make me feel any better. With no experience to take with me, the stories of parents sounded incredibly depressing, and the personal accounts of those on the spectrum often seemed bitter and angry. I was scared for my and my son’s future.

By the time I got Wylie into an ABA school, I had calmed down a bit. I had read lots of stories on the internet, and a few things became a little clearer. First, it occurred to me at some point that when I scanned sad, sad stories on the internet, I wasn’t looking at a clear representation of ALL autism. It wasn’t a very good sample size. People are more likely to go on the internet to vent their troubles than profess their happiness. Likewise, I quickly realized, these people who vented their troubles still had good days as well. People with autism often expressed pretty justified anger at being treated like second class citizens, and being disparaged and dehumanized, often by the people who were supposed to love and support them the most. Being justifiably angry isn’t the same thing as being miserable. Parents who got anxious in the middle of the night and blogged their fears still celebrated their children’s accomplishments in the morning. My window into autism was a little foggy on the internet.
School began and it was an eye opening experience. I missed a lot of the isolation people experience when their child is diagnosed, and suddenly their lives become too busy for old friends and hobbies. Wylie’s ABA school is filled with kind and passionate parents, who all cheer their children’s progress. The parents helped change my perspective. Wylie does well in school, and I was encouraged to get excited about it. There are kids there who make slower progress- and you know what? They’re awesome. I would sit in and watch Wylie’s sessions at first and the other children would delight me. A girl was so stubborn and clever she could sense when eyes were off her in a millisecond and be off and in hiding with whatever toy she desired. An impatient little boy raced through his tasks without waiting to be prompted so that he could go play. An explorative little boy would wander away from his desk in an instant to watch something on someone else’s portable DVD player. My window was opening up.

A year later, I feel quite familiar with autism, although I’m sure as my experience expands as the years go by, my knowledge and opinions will evolve (or change altogether). My son has made tremendous progress and has amazed me every step of the way. Beyond that, I just adore the kid. I admire him. I’m definitely his biggest fan. Well. I claim the title, anyway, his daddy will have to fight me for it.

The things that scared me the most about autism ended up not being a part of my reality. I worried about connecting with my son- about us being a whole family. I would stare longingly at children talking to their parents, asking “why” and “what’s that” and having a back and forth conversation. I would stare jealously as if that would never be a part of MY reality. Wylie would ignore me when I came home and I felt like I was facing a lifetime of rejection from my own flesh and blood. But Wylie and I are deeply connected. We enjoy each other immensely. Not only do I love him unconditionally, I LIKE him so much- and he likes me, too. He loves me. There is coloring and cartoons and tickling and giggling, just like all the things I was so worried about missing out on.

Right now, we are quite happy. And so, I feel I should get out here and tell my story, so that when someone with a new diagnosis in the family is up at 3 am, they can find a little hope somewhere. My story is just one story, but it needs to be represented.  

Wednesday, July 13, 2011


Wylie and my husband and I are having a lazy day after many, many busy days. Good busy- lots of leisure along with the work. Wylie came home from school today and jumped right into silly fun- he spent an hour running around with a bubble gun that shoots out hundreds of bubbles when he pulls the trigger. After I took it away, because it was making a huge mess, he moved on to this ridiculous toy keyboard his godfather bought for him, that is shaped like a big cat and the notes are different pitches of "meows."

Today is not a day for repetitive drills and sitting at a table.  Wylie really hasn't needed that kind of structure lately- he is just "getting it" lately. He's curious and eager to show off- walking around pointing out objects and his new knowledge of colors. We have learned so much through play and fun around the house. We can be goofy and he can be a kid. Can't get any better than this.

He calls me "mommy" now. Wylie sees a picture of his dad's CHIN in a photo, and he perks up and says "Da Da!" He knows the dogs' names. But up until very recently, like within the last week, he hasn't called me anything. He has repeated phrases such as "Mama, what are you doing?" before and has called me "Mama" when prompted, but now he calls me "mommy" and I could just cry every time I hear it, but I just breathe in all the joy and run with it. No time for emotional reflection now. We are on a roll.

He has resisted a nap right now and has agreed to sit quietly and watch his Baby BumbleBee Colors Video. Look, I've heard all the stuff about Baby Einstein and similar videos rotting children's brains, but Wylie has struggled SOO much with his colors and now he is finally learning. His favorite color seems to be Black! He likes saying it, at least. (Shrug).

Friday, July 1, 2011

ABA Drill Sergeant Mom, Meet Doubt

                So Wylie was in a day-camp. Haha. Yay! His school arranged the camp for the students and broke them up by age group. It took place an hour after his last ABA session ended in the morning, so we had to kill an hour for a week by having lunch at a nearby McDonald’s. Today he finally figured out the routine and when he realized leaving the fast food joint meant going back to school, he started howling and crying. I really, really, REALLY didn’t blame him. He has an extra hour of ABA on Thursdays, and his day was already long. And now he knew he had to go back. BS. Yeah, Buddy, I gotta agree.
                When we got back to his school, he found a black bean bag chair in the corner and slumped down in it, sulking. I was surprised to see him so frustrated and disappointed. He’s usually pretty happy to be out of the house. But it was a really long day for a 2 year old.
                I’m not really conflicted. At first, I was pretty skeptical about this camp idea (it was a little steep for the amount of hours) but by the time I really started looking into nearby preschools, I liked the idea. The therapist who runs the school had already talked to me about some of the programs they would work on and thought it was a good start to prepare him for a preschool setting. I do not know if Wylie is ready for a fully included regular old preschool. He’s just so bright and very good at following instructions, as long as he really understands what is expected of him and people follow through. He’s just like his mama, we’re wild, free spirits and stubborn and complainy, but give us a little structure and we’ll flourish.
                So, when I started looking, all these questions that I hadn’t thought of before suddenly needed answering- hmm, can Wylie follow along with his peers? Can he stay focused on one activity for a length of time? How much prompting/attention would he need?
                 He does well in his social groups and his imitation is impressive. I speak as a proud mother who remembers a little boy who wouldn’t repeat sounds and had no idea what you expected of him when you modeled a gesture or motion. He pretty much gets that if a bunch of people are participating in an activity, it’s probably appropriate to join in. Oh, shit, wait. That’s one of those awful NT “sheep” traits I just brainwashed my son into possessing. Oh, wow, that kind of hurt my brain a little bit.
                Maybe I am conflicted?

Saturday, June 25, 2011

Interesting People

This is a really cool blog by a 7 year old boy with autism with a passion Paleozoic creatures:

I checked out his profile... I'm not really sure why he hates on mammals, but uh. Whatevs. Haha!

Friday, June 10, 2011

Applied Behavioral Analysis

               I've been reading a lot of negative things about Applied Behavioral Analysis lately. I really do not understand the claim that there is something malignant about ABA. I think it is untrue, and those who buy into it are making some serious errors in judgment about

a) Human Nature, and more broadly
b) Animal Nature
c) Responsibilities of a parent
d) Rights and Freedoms of a Child
                There is this misperception that those who use ABA methods to teach and modify behavior completely ignore the “whys” of behavior. That because behaviors are caused by sensory, anxiety, or comprehension issues, trying to change those behaviors is equivalent to dismissing those issues. I do not believe this to be true. One has to learn appropriate behaviors, at least to the best of one’s capability. Most ABA concepts used to treat autism involve programs of functional analysis, where behaviors are really scrutinized for their underlying functions and better behaviors are introduced to serve the Same function, if necessary. Factors like anxiety, fear, and confusion are not ignored. Coping strategies can be introduced.
Setting rules for behavior isn’t outside the normal scope of parental authority. I find it bizarre (and a sign of the times) that people compare it to brainwashing. Parents are supposed to strive to influence the behavior of their children. Certainly this leaves a lot of room for the subjectiveness of different value systems, but that is just a reality of different perceptions. We accept that not all parents will discourage or encourage the same things as the next parents. Parents are imperfect, are not always going to “get it” or be right, but it is their responsibility to raise their children to the best of their abilities and arm them with life skills.
                And realistically, when we are talking about something like early intervention in the first few years, there’s very little controversial influence on behavior. The focus is mostly on learning skills in areas such as communication, social interaction, and self care. Yes, meltdowns, screaming episodes, hyperactivity, and inattention may be things that are discouraged, but although these are almost always sensory related and never the fault of a young child who is lacking coping skills, they still hinder learning, can be harmful, and need to be addressed.
                How behaviors are encouraged or discouraged through ABA methods is another aspect many people take issue with. I have heard ABA compared to dog training, since oftentimes, children are given a single task (a “trick”) and are rewarded with something tangible (a “treat”). That is an emotional response. All behavior is based on motivations and reinforcement. Just because neurologically typical people find it easy to respond to more naturally occurring, often less tangible reinforcers, doesn’t mean a child with ASD will always find it as easy. My own son had no interest in sitting still and attending his lessons when he first started learning skills through ABA. While a child without autism would be more likely to respond to praise or their own satisfaction of pleasing their parents by following their instructions to take a seat, my child would not (at first) be reinforced by these things. In fact, at first, he wasn’t reinforced enough by any toys or games at all- the only thing my son found worth working through 2 hours of programs was edibles- little teeny snacks. He doesn’t know that learning these skills is important. He’s 2. A typical child doesn’t know these things, either, really, but may find learning through socialization and communication much easier and more naturally reinforcing. As a parent, it is up to me to find a positive way to encourage the emergence of life skills. Positive reinforcement with tangible rewards is really okay in my book.
                Now, punishment, on the other hand, isn’t widely used anymore. When Dr. Lovaas was first treating autistic children, he used punishments. If anyone has read Catherine Maurice’s Let Me Hear Your Voice, she talks about mild punishments like firm “No!”s and even mentioned shock therapy in her book. The debate is sort of over in regards to punishment- punishment CAN affect behavior, but not nearly on the same level as positive reinforcement. Avoidance behavior can result, making a bad situation worse (children can develop an aversion to their therapists/parents, they often misbehave any time they know they are not being watched… this is animal nature. Animals, such as dogs, do this as well). That being said, there are times when parents have to discipline their children. Temple Grandin talks a lot in her lectures and books about knowing there were going to be consequences to her actions and how that helped her find ways to deal with her behavior when she was a child. If she got in a fight at school, her mother would not let her watch her favorite TV show. I think it is a very important lesson to our children of all ages- even if behavior is sometimes unintentional, or unavoidable, there are consequences. It does not have to be over the top. Screaming or hitting children is not nice, not effective, and has no place in any therapy program (or child rearing or anything, in my opinion…) But I think minor inconveniences for our little innocents are worth the lesson. That being said, in my opinion, a good ABA program would not involve punishments. At all. Appropriate behavior and correct responses to direction would be reinforced, and problem behavior such as tantrums or meltdowns would be probed for its trigger, and then redirected to more positive/appropriate behavior.
                There is more, but this would get really really long. It’s cool if you don’t dig the scene, and there are some valid objections to it, but ABA just should not be dismissed out of ignorance of the facts or mistakes from history that have since been corrected. It doesn’t dehumanize our children by turning them into puppies or brainwashed robot-zombies. Anybody who wants to take a swing at your kid- run, run, RUN, and then maybe alert the proper authorities. Individuals with ASD DO have rights, of course, but, like with NT’s, less rights while they are children. My two cents on the matter, anyway. Feel free to add yours, I’m pretty open minded.