My name is Rob Raede and I'm Danny's Dad. As parents of kids with Asperger's, I don't need to tell you that raising a child with AS can be incredibly challenging and frustrating. My wife and I are thankful every day that somehow along the way we did enough things right to get Danny to a point where he could find a path to become a thriving adult.
Asperger's as a term and diagnosis was fairly new when Danny was diagnosed at age 12. Not very many people knew about it, and no one had heard of Defense Mode or Sensory Funnels. Resources were limited, and we had to make a lot of it up as we went along. We wish we had Asperger Experts around when we were raising Danny.
I thought perhaps it might be helpful to other fathers of AS kids to recount some of the things I did wrong, and did right, raising Danny.
Let's get the embarrassing mistakes out of the way first:
Number 1: Expecting Danny to eventually become more like his older brother and/or me. I'm a reasonably average guy, in terms of how I like to spend my free time. I like bike riding, playing and watching sports, cool cars, and watching action/adventure type movies (if nothing blows up in the movie, it really has to be something special for me to like it) In short, guy stuff. And I also like to play and write music.
Danny's older brother shares almost all of those interests, which made it very easy for he and I to bond, and have common ground as he grew older. With Danny, to build that same bond required an alternate approach (see below).
I've always intensely enjoyed spending lots of time with both my sons, and from a very early age I would take them on outings every weekend, hikes or to the park, shopping or running errands, and lots of camping trips, etc. Between the ages of 2 and 12 or so it was “let's go boys, we've got adventures to do”, and we all loved it.
When Danny got to be 11 or 12, it became increasingly obvious that he was a different kid, with very different interests and feelings about, and reactions to, the world. It became clear he was not going to be like me, or like his older brother.
And that took me some time to adjust to, during which I probably tried way too often and sometimes too insistently to get Danny to like playing ball sports, or bike riding, or rough housing around. Danny liked none of those kinds of things, and at first it was disappointing to me.
Number 2: Sometimes getting angry at Danny for withdrawing from, and refusing to participate in, whatever family or “boys” activity we were engaged in. I was never proud of myself for that, but occasionally I would raise my voice to Danny trying to exhort him to get engaged and be part of whatever we were doing. There were times when Danny's actions were a real drag on the family fun dynamic, and times when it tested my patience and my wife's as well. Every now and then I'd lose it a little and get mad at him.
There's a fine line between accommodating a kid with Asperger's differences, and coddling him. I was probably a little too much on the tough love side, but I did not want Danny to ever think of having AS as an excuse to fail. In retrospect, I could've been a little more understanding from time to time.
Things I did right.....
Number 1: Figuring out how to engage with Danny in the things HE was interested in. I will come right out and admit this...I don't like Pokemon. I know it's strange, but there it is, I'll just have to live with it. But Danny does, or did between roughly ages 12 thru 16. So during the summer, or on weekends, given his lack of interest in the activities that I often enjoy, if I wanted to spend time with Danny it was going to have to be doing things that he enjoyed. Like playing Pokemon, and Dungeons and Dragons, and reading D&D books, and looking at funny websites, etc. So that's what we did. Danny is my kid, and I love him, and I like spending time with him. So, I did the things that he liked doing. Even the ones that give me a major headache.
Number 2: Learning what made Danny uncomfortable, and when to stop an activity. As important as it was to spend time with Danny doing what he was/is interested in, it was equally important to figure out the things that really made him uncomfortable, and not do those things. I remember very clearly once, Jurassic Park 2 had just come out, and Danny wanted to go see it, so I took him to the theater one Saturday afternoon.
10 minutes into the film, when the Stegasauruses were rampaging around, Danny got spooked by it, and wanted to leave. Parents all know that it's not inexpensive to take your kids to a first run movie-- you've got the tickets that run $10 each, then the wildly overpriced popcorn and candy, etc. It can easily be $35 just for two people at the movies, so at first I thought about trying to convince him to stay, give it a chance, etc. Finally, though, I decided that we'd just do what Danny wanted. Without any arguing or cajoling. As we walked out, Danny said “Dad, 10 minutes of a movie like that is about right, don't you think?”. I laughed and agreed, and we found something else to do.
The “aha” moment there was discovering that the important thing was not what specific activity we were engaged in, it was just spending time with my son, doing something he was comfortable with.
Number 3: Believing in Danny and standing up for him. As we learned more about Asperger's, we also learned about all the famous successful people who have or had it--Albert Einstein for example. I will say, having read about the habits and characteristics of several other well known folks, that it wouldn't surprise me to learn that Bill Gates has Asperger's, as does likely Warren Buffett and especially his partner Charlie Munger. 5 minutes into the movie “Social Network”, about Mark Zuckerberg and Facebook, as the Mark Zuckerberg character is talking to his soon-to-be-ex girlfriend and taking everything literally, my wife and I both looked at each other in the movie theater and said simultaneously, “Aspergers”. (Only judging from the movie character, we've never met Mark Z.)
So our family would talk about that around the dinner table, and I always felt very certain when I told Danny that someday he would grow up to do something really interesting and important: that he would see things differently than other people, and make some kind of very special contribution to the world.
He wasted no time in proving that prediction correct.
(As an aside, I think one of the things we did right in general as parents was having dinner every night together with our kids. That's where we talked about our day, about what we were doing and feeling, about current events, and family history. In many ways, it's what gave our family strength and cohesion.)
As Danny progressed through school, we would occasionally encounter a teacher or counselor who would require, um, education about the correct way to deal with Danny. I should say here that the vast majority of the Danny's teachers in Jr. and Sr. High School were terrific, some of them actually becoming friends of Danny's to this day.
However, about once a year or so while Danny was in high school, we would run into a person of authority who either refused to believe Danny has AS, or refused to cooperate with the terms of his IEP. So I, and sometimes my wife and I, found it necessary from time to time to sit down with the teacher or counselor and explain very gently, but very firmly that if they didn't get with the program a you-know-what storm of Biblical proportions was about to rain down on their heads. All the while smiling and using a calm voice. Actually, I used what Danny refers to as my 'scary voice', which is very soft and low pitched. It means I'm a touch upset.
Being an involved Dad, and showing Danny that I had his back, I think was very important, and gave him a lot of confidence that he had at least one safe place to be where everyone valued him; namely, home.
To conclude, raising an child with Asperger's was often frustrating, occasionally infuriating, but always fulfilling and I wouldn't trade it for anything. To the Dads out there, you're probably going to make mistakes just like I did, but don't despair. It doesn't mean you won't be successful raising your child. And maybe you can learn a little something from my experience, save yourself a little time.
One last thing I would add for fathers of kids with AS-- remember to keep your sense of humor. It's really helpful.