Occasionally I’m asked what I think about being the parent of an autistic son. Over the years (about 16 now) I’ve had the chance to give it some thought, and I have to say that although my opinions on quite a few things related to autism have evolved – and some have outright changed – there is one thing that I’ve always believed:
Parenting an autistic child is, first and foremost, nothing more – and nothing less – than parenting a child. Yes it is different, and sometimes (OK, much of the time) more difficult than being the parent of a “normal” child, but that doesn’t change the fundamental nature of being a parent.
Parenting is hard. We try and try and try to get our kids to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), they do it, understand it, say it.
At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?
The following quote from George Leonard’s The Way of Aikido
What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice. Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”
To learn anything significant…you must be willing to spend most of your time on the plateau. [T]o join the on the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.
Another way of looking at it comes from a saying I heard a while back:
A truly happy person enjoys the scenery on a detour.
How’s the scenery where you’re at?
This modified version of something I originally wrote in February 2006 was inspired by a tweet today from John E. Smith, aka @StratLearner
no straight lines 
I appreciate Leonard’s metaphor of the plateau, with it’s apparent stepwise jumps resulting from practice -> assimilation during the plateau phase -> incorporation -> repeat. There is also often an apparent “loss” of skills during the assimilation phase, while new information/skills are being combined with the old, which is perhaps the hardest part of all.
I also ascribe to the “spiral” theory of training/learning, where basic concepts are visited over and over again, but each time they are appreciated in a new way because of your additional experience.
I suppose you could combine those two into a “bent spring” kind of metaphor…
And yes, the scenery right now is OK. No major problems in school this year (knock on wood).
Joe
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Having raised three NT younguns’ to adulthood status (although with my son, age 36, that is sometimes a bit questionable) and now, being blessed with two grandchildren (ages 6 and 3) who – along with their parents and oldest half-sister all live with me, I am very much in agreement with you about parenting autistic children vs. NTs.
Granted, with these two grandchildren, there are issues that do take a lot longer to register, sink in, be absorbed -pick your term -but I have to say I don’t recall having as much joy in my heart, tears in my eyes either over accomplishments of my three as I do with these two characters! Knowing how much effort has been put forth by teachers, therapists, family, friends -in addition to their parents and my own contributions towards their goals makes even the addition of one small word, one little peek given that shows a bit more comprehension, advancing knowledge in the social skills area -again, you name it -and it marks a really joyous occasion!
We had an episode this past Saturday night -I blogged about it and have a short video there of my granddaughter in the midst of one really massive meltdown -the likes of which we haven’t seen from her in probably about two years now. It was aweful! Patrons in the grocery store, staff people -all either giving us really nasty, dirty looks or offering advice on how to manage unruly, spoiled children seemed to come out of the woodwork a bit there. My daughter told me later that she could have easily ended the meltdown by returning the package of “chewy” fruit snacks that she had removed from the cart due to the granddaughter’s misbehavior but she couldn’t do that either because that would have been reinforcing her bad behavior. And those same people might have witnessed a truly spoiled child then sometime in the future because of getting her way in this instance.
NT children have temper tantrums, are demanding of things they want, regardless of whether it is deserved or not just as autistic children try to make the same type of demands on us too. The difference? Sometimes, just a stroke of luck that something else diverts their attention, other times, just learning to ride the storm out to the bitter end I guess.
My daughter and I have learned over the past few years -since being introduced to autism -to try to find something good in each event, even when you are embarrassed almost to tears by the behavior. As a result, Saturday night, we joked the whole way home about how we had just given a presentation to the people at that Weis Markets on Autism Awareness!
And we also saw other good things that came out of the meltdown too -for openers, that the little guy didn’t automatically join forces with his sister, competing for the highest audio output championship or some such thing. Whether the granddaughter will retain the lesson of that evening -well, that remains to be seen. But her mother and I both got some good lessons in how to ignore dirty looks, that much is for certain!
And on it does and you just keep on trying -putting one foot in front of the other, day after day and hoping that something will register and stay there too then! And, it does happen too -a lot more than we recognize at the time I think.
Sorry for writing a book here in your comments but I really do very much agree with your thoughts on this topic.
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Joe,
Thanks for bringing up the “assimilation phase”. As you say, this is probably the hardest part of the journey, because it is at that point that it really seems that things aren’t working, that they are actually getting worse (which, of course, they are, even if only temporarily). This is when most people who are going to give up do give up, so this is an important thing to help people understand.
I also like your reference to the “spiral theory” of learning. In systems engineering we call this “build a little, test a little”, and with anything of any complexity it is the only way to go. It also explains why I have a tendency to re-read some key books from my library: based on my new experiences, the books are often almost like new.
Glad to hear everything is going well this school year. We are having a good year as well, though it is somewhat hard to believe that Z is a Senior this year!
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Jeni,
Thanks for sharing your story. Though I always hate to hear of melt-downs, especially big ones like the one you describe, I love to hear the stories of those meltdowns told – as you do – with a positive attitude and not a doom-and-gloom “why me?” attitude. Parenting is parenting, thanks for helping me get the word out.
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