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.

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.  

"Mommy"

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).

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?

Interesting People

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

http://www.lifebeforethedinosaurs.com/

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

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.  

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. : - )