November 2010 Update

It has been almost two years since my initial blog. First of all, I really appreciate everyone for taking the time to read it (I know it was ridiculously long). There are books upon books, and stories upon stories about lots of people who are going through a similar situation. The latest estimate is that 1 in 91 children are being diagnosed as autistic, and there are countless others who fall on the autism spectrum. It is impossible to gauge "how autistic" our son is. I do know that he has overcome a lot in the 42 months since we found out about this challenge. As I covered in detail, things like talking and basic interactions were still question marks back then. Now he speaks wonderfully, but there is plenty of work to do. In 2008, we were desperate to figure out how to get him toilet trained ("My kid can't go to kindergarten in diapers!"), and sensory issues actually became a much bigger problem after I wrote that blog. I've gotten used to telling people that we seem to just trade one problem for another, but the truth is that he has had an AMAZING year.

Around the time I wrote my initial entry, Brody was still in preschool. He seemed to develop a heightened sensitivity to noise around that time. He was very quick to cover his ears, for even low noises. This also seemed to be related to certain kids in his preschool class who liked to push his buttons, they apparently seemed to enjoy what appeared to be overreactions to loud noises.

Imagine that, kids like to tease.

This quickly turned into Brody f-r-e-a-k-i-n-g out every time another kid so much as looked in his direction. I could tell you story after story from this past year about how we couldn't be around any other kids without some kind of incident. And I'm sure you can imagine: if gaining friendships is such a necessary part of life, how will this kid EVER make friends when he covers his ears and yells "Don't look at me!" at any kid who is around?

It was certainly an inappropriate response, but you have to take care here: Sensory overload is painful to any person who is autistic. I mean, it is LITERALLY torture. When Brody would hear a loud noise, I could feel him break out in a full-body sweat and his heart would race. When these other-kid reactions would take place, we would try to calmly manage his reaction in the moment. Later, we would have conversations about what IS an appropriate reaction. You could tell that it was a real struggle for him.

Soon after I wrote that initial entry last spring, we finally had a breakthrough in the toilet-training department! It doesn't make for a very good story, so I won't go into much detail. We found that using a "chore chart" was the best way to motivate him, and we rewarded ANY progress he made. Like any parent would tell you, it is like a switch gets flipped. One day he was done with diapers, and we never looked back. I think his personal awareness needed to develop to a certain point. Autistic people do not have a built-in awareness of themselves like most people do, BUT it can be taught.

Something interesting about his mind: I see a real structure to how he looks at things. Timelines are fascinating to him. He is always talking about being a baby, then toddler, then kid, then teenager, then grown-up, then husband, then father. It is very methodical. We use this to his advantage- if there is something he needs to work on (like toilet training), we remind him that he can't move on to the next step unless he reaches a certain goal. It's easy with something very tangible, but as we go, I see the need to work in more subtle things. Things like making eye contact, understanding personal space, etc. He is emotional at times, but also very logical. Generally, he will accept any decision we make as long as we give him a reason that makes sense to him. We really deal with hardly any tantrums, thanks to his logical nature. If he wants us to buy him something, the answer is simple: We don't have enough money. He might say something like, "We will get it when we have more money." And just like that, no more problem. If it is a rule, we follow the rule -period-. You parents of neuro-typical kids are probably a little jealous, huh?

Well, if you've ever been to Disneyland, you would definitely have been jealous of us last summer (2009). Disneyland will make accommodations for children with special needs. As we prepared for our visit, we knew it would be a nightmare waiting in line with hundreds of kids around, and Brody freaking out about any one of them who so much as looked in his direction. So, we decided to take advantage of this provision. We barely had to wait in any lines. I'm talking, 15 minutes, TOPS, for any ride. I'm not gonna lie, it was awesome. For one day, it felt like we had it easier than all the other parents. Considering the other 364 days a year never feel that way, it was nice, and I really appreciate that they would do something like that at Disneyland.

Last fall, we had a chance to see Temple Grandin speak to a small group of people. Temple is a professor at CSU, a writer, and she is autistic. HBO did a great movie about her, it just aired for the first time in February 2010. It was fascinating to get her perspective. Many things she said stood out, but one thing really made an impression on me: When she was a child, she was not allowed to stim openly.

I spent a few paragraphs addressing stimming (self stimulation) in my initial post, so I won't spend too much on it here. With our son, he mostly likes to spin in circles and stare at random objects in unusual ways. Stimming has a calming effect for autistic people. A lot of these behaviors are not socially acceptable, so I thought it was interesting when Temple said she was simply not ALLOWED to do it openly. She said she was permitted to do whatever she wanted in her room (behind closed doors) for a half-hour every day, but beyond that, it wasn't allowed. She even laughed about how she knew how strange some of these behaviors were, like chewing on a piece of wood, but at the same time, it did help her feel better.

We took this information and applied it at home. We don't allow certain types of behavior, whereas before, it felt like we had no choice. If Brody wants to spin, he has to go do it in his room-- mind you, not as punishment, but as a way to teach that if you're going to do something like that, do it in private. I think he usually feels like he would rather stay where he is at, than go through the trouble of going all the way to his room. He never protests, although he does occasionally forget the rule.

Last year also marked Brody's completion of kindergarten. As I mentioned, he was terrified of other kids, so we figured it would be difficult. We also did not plan our vacation very well, and we ended up out of town for the first day of school. Oops. It was especially difficult when he did go, because everybody else already knew the routine. We felt like bad parents for not thinking that part through.

He caught on pretty quick, though. After about a month, he started occasionally having days without some kind of meltdown. He actually likes school a lot! It was hard to watch him around these other kids, because it was pretty clear that his reaction to any attention from them was making it more difficult to make any friends at all. Of course, recess is chaos, so we observed him walking by himself a lot. It's hard to tell if he wanted to be involved... I've read that a lot of autistic kids WANT to play with other kids, but do not know how. With our son, he really seems content in his own world. This could be good, as far as being happy in general. But it could also be bad, because he needs a certain amount of social interaction so he can gain some of the skills we all need as adults. Just as it was with getting him to use his speech to communicate, we had to find a way to draw him out.

We have had a few meetings with his teacher and the special education administrators to try to organize things a little better so that he could get worked in to the mix, so to speak. Their idea was to have him "shadow" another kid, and they chose one of the girls. This actually worked really well- he would follow her around at recess. If nothing else, I'm sure it looked like he was playing more like a typical kid would play. It ended up being a fantastic idea!

I couldn't tell you which day it was, but suddenly, he was not afraid of other kids any more. What a relief that was! I am glad that he always finds a way to overcome each challenge he is faced with, and of course, that means we inherited a whole new set of challenges. Now, we have to find a way to help him understand turn taking in conversation, nonverbal communication, etc. We constantly have to remind him to address us by name (Mom/Dad, as opposed to just saying whatever is on his mind without directing it to a person), and he still asks questions when he means to make a statement, problems we have had since the beginning.

It is really all about pushing him out of his comfort zone. In the most unlikely of places (The Jim Rome Show on AM talk radio), I heard one of the best pieces of advice I have ever heard: In order to be successful, you have to get comfortable with being uncomfortable. As a parent, you can never accept that you child CAN'T do certain necessary things, you simply must find the right way to teach them.

As I write this, Brody is currently in 1st grade. We see continual progress, but his digestive issues are as mystifying as they have ever been. He likes school in general, gets along with the other kids as far as we can tell, but focus is a real challenge. He loses things, can't remember how he got hurt, and you can only expect the school to do so much. He had an especially spacey week, and the school lost him three times. This was unacceptable, obviously, so we had to meet with everyone responsible for him to make sure we had a plan to never let that happen again. It would be nice if he could be trusted to go from point A to point B without getting sidetracked or distracted, but we're just not there yet. Sometimes he gets distracted on his way to the bathroom! Stimming has taken on the form of walking along the edge of sidewalks, or really anything with boundaries. He bounces off of walls sometimes. At home he walks around the room, bouncing off of the furniture over and over. He has a real need for structure, and sometimes he has to do things that create that feeling. I'm sure a good occupational therapist could help with that sort of problem, but like so many things, we are kind of on our own until a means of paying for that sort of thing manifests itself.

That's really the frustrating thing for many parents of autistic children. Every one of these kids could really benefit from daily work with lots of skilled, knowledgeable professionals... but this is the real world, and most of us can't afford it. We love our kids, and we do what we can for them.

I'm going to make an effort to update this blog with a little more regularity, and keep the posting size down. When you have almost two years to catch up on, it's hard to fit it all in! Thanks again for reading! If you have any questions you would like me to address, please send me an e-mail, and I will try to answer in any way I can!