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Don’t let autism stop you from being a parent

04-Apr-11

Autism blogger Lisa Jo Rudy once challenged parents to “quit autism for just one day.”

Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.

Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.

Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting.

My response to Lisa’s challenge reflects this attitude:

Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.

I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.

I am, to use your words, “just a plain, ordinary, loving, proud parent.”

Every day.

No doubt parenting an autistic child can be hard. But don’t let that turn you into an “autism case manager”. Don’t let it stop you from being a parent. A plain, ordinary, loving, proud parent.

Every day.

Take the time to learn from your kids

03-Apr-11

I have had a lot of teachers throughout my life. Some taught me because they were paid to, some because they were supposed to, and some because they wanted to. Many of the best teachers in my life, though, had no idea that they were teaching me. (Or, perhaps more accurately, that I was learning from them.)

At the top of this list of unintentional teachers are kids, especially my own.

When the relationship between parents and their kids is discussed, “parent as teacher” is a common interpretation. There is no doubt that parents need to teach their children. But if we only see ouselves as teachers, whether it is because we are supposed to or because we really want to, we are missing out on some of the greatest learning opportunities we will ever be given the chance to experience.

This is especially true if your kids are different from you, or different from what you expected them to be. For example, if you are a “jock” and your kid a “geek” ( or vice versa). Or your kid is disabled and you’re not.

If you are a parent, take the time to learn from your kids. You’ll be amazed at what they can teach you.

Make up your own mind about autism

02-Apr-11

Every now and then when I’m out with friends, or introducing myself to someone new, the topic of conversation winds its way around to autism. Sometimes the person knows someone who has an autistic child/niece/nephew/etc, or maybe they have an autistic child themselves. Since I am the parent of an autistic son they ask me to help them understand autism, and their autistic relative, a little bit better.

There are many possible ways to approach the question. I could start with: Vaccines cause autism, once they have it, it’s a long struggle to recover them. Or how about: Nothing “causes” autism, it is just another aspect of this neurodiverse world we live in.

As far as treatment: Chelation, to get rid of the mercury and other metals. Or: A special diet that is almost impossible, and incredibly expensive, to adhere to. Or: ABA. Or: (add your favorite treatment here). How about, there is no need to “treat” the autism, you just need to treat your child as a child; different, but still just a child.

For someone to say that all autism is nothing more than mercury poisoning is irresponsible, though I don’t doubt that at least one case of autism could be traced directly to mercury. On the other hand, to say that all autism is solely the result of genetic factors – with no influence from environmental triggers – is irresponsible, though I sincerely believe that some cases of what we call autism are indeed purely genetic manifestations.

To say that all autistics live miserable lives and will never be happy or able to live and function on their own is simply untrue, though it goes without saying that there are some autistics whose life will be exactly like that. To say that all autistics have the potential to live happy lives and live and function on their own is as untrue as the opposite example above, though obviously some autistics will find happiness and success on their own.

If you are new to autism, because you have a newly diagnosed child or you are just curious, listen to what the extremists and fundamentalists have to say. Read the blogs and books of parents of children with autism and the books and blogs of autistic adults.

And then pay attention to your own instincts and make up your own mind.

Get to know your child – as he or she is, not how you wish they were – and figure out what YOU think is best.

Not just for your autistic child, but for you. For your spouse. For your other children. There is no simple answer, no matter what you hear, and there is no simple path to follow as you make your way through the world of autism.

Sounds a lot like parenting, doesn’t it?

Autism Awareness Month 2011

01-Apr-11

Every year when April – otherwise known as Autism Awareness Month – rolls around, I ask myself, “Awareness? Awareness of what exactly?” In the past I have often forgotten my own advice and tried to find a “one-size-fits-all” answer to the question. (My advice: there is no such thing as one-size-fits-all for anything.) Some years I just bailed on the question altogether. Like last year, this year I’m going to focus on one aspect – a theme, if you will – of autism awareness.

A consistent theme throughout all the various incarnations of this blog, not to mention my life as the parent of an autistic son, has always been that parenting is parenting, no matter what kind of kid(s) you have. It seems fitting that I use that as my theme.

Everyone is different, of course. The challenge with autism is that autistic kids – and their parents – are different in a different way, a way that many people are not familiar with and – more importantly – not comfortable with.

So, for the next month I am going to revisit and repost some old articles and write a few new ones to build on this theme. I will also be looking around the web for others talking about the same theme. If I can make just one person more aware that parenting is parenting, even for those with autistic kids, I will consider my efforts a success.

Of course, I’m expecting to reach more people than that.

Share a Chair – There should be an app for that

07-Mar-11

When I got to the airport restaurant, there was a short line of people waiting to be seated. Everyone waiting in this line was a party of one. Frustrating, since as I looked around the restaurant there were plenty of empty seats and table space. But not very many empty tables. As you can probably guess, many of those that were seated were also parties of one.

If I had been in Europe I would have just gone up and asked someone if I could join them (something Julie and I learned to do when we lived in Germany). But that really isn’t something that most Americans take too kindly to. When I was finally shown to my table – a spacious 4-seater – I told the hostess that I was willing to share the chairs that were going unused at my table. She thanked me, and even mentioned it to the first few people standing in line. I was not really surprised that no one took the offer; not surprised, but disappointed.

Here we were, all in essentially the same boat: business travelers on our way to work some magic far away from home, or on our way back home after working said magic. And instead of taking the opportunity to meet someone new, to maybe have an interesting conversation we would probably never have otherwise, we chose to eat alone. Keith Ferrazzi – author of Never Eat Alone – would be rolling over in his grave if he weren’t still alive and kicking.

I announced my available chairs on Twitter and on Foursquare, knowing that it was very unlikely anyone would notice and be able to take me up on the offer. (@Your_Shirt_Guy noticed, but was sadly not at the airport at the time.) As I sit typing this on the airplane, having been reading Jane McGonigal’s (aka @avantgame) Reality is Broken while electronics were verboten, it occurs to me that this could make for an excellent location-based app/game. OK, maybe just a great app.

You’re traveling alone, and stop in at one of the airport restaurants for lunch (or dinner or maybe just a beer). You check in to Share-a-Chair to let other travelers at that airport know that you have a spare chair that you want to share. You get a +1 for posting the available chair(s). When others sit down with you and check in, you get another +1 when someone takes the first chair, with a multiplier for each new person that takes one of the chairs you offered. The players who accept your offer of a shared chair each get a +1.

Or something like that.

As much as I would love to play an app/game like this, I don’t have the coding skills – or the time to devote – to make it happen. If you happen to build something like this – or if you already have – I’d love to hear about it and join in the fun. And maybe have dinner with you one day at IAH (or STL or …).

In the meantime, I will be using #ChairShare on Twitter and Foursquare whenever I find myself eating alone.

Teach your kids to embrace – not fear – the power of the internet

17-Feb-11

Yesterday I participated in a Twitter party hosted by @TheOnlineMom * to discuss the questions:

How much do we trust our kids online?
Can we monitor them closely and build trust?

The focus of the discussion was, as the topic questions hint at, how do we keep our kids safe? How do we protect them from all of the evils lurking out there waiting to swoop in and take advantage of them? Perhaps the biggest question, though, was: How do we protect our kids from themselves online?

It was a great discussion (you can see it at #TheOnlineMom), but it reminded me a lot of a not so pleasant PTO meeting about kids online that I attended a couple of years ago, when my kids had just started high school.  I’m not sure what I was expecting from the meeting, but you can probably imagine my horror when I realized that the basic point of the meeting was for internet safety experts to tell us how evil the internet is and that unless we did something our kids would end up dead in a ditch somewhere at the hands of a sexual predator.

OK, so that’s a bit of an exaggeration, but not by much. The focus of the meeting was indeed the evils that lie in wait for our kids, and what we as parents should – MUST – do to protect them. You can see much of what they talked about on the district’s Internet Safety Resources for Parents page.

I had a hard time sitting still through this and not speaking up as they brought out negative after negative (after negative). I waited until the Q&A and then asked what I thought was a reasonable question: Do you (the school district or the presenters) have any related presentations that describe the positive opportunities the internet provides to our kids?

It wasn’t the first time – I’m sure it won’t be the last – that people looked at me like I had two (or seven) heads.

A big part of the problem, as I saw it then, was that so few of the parents in the meeting actually used the internet themselves. A case of ignorance breeding a deep fear of the unknown. Amazingly, I saw some of the same thing last night in the discussion, comments like “I hope my kids never hear about Facebook” (from parents of very young kids) to the question, “Many parents ask whether there is any learning value in social networks for teens, what do you think?”

Here’s how I responded to that last question:

Social networks – virtual or real life – are the primary way that everyone learns, teens included.

Unlike that PTO meeting all those years ago, the discussion last night also included quite a few voices of (what I would call) reason, parents who see more than just the potential dangers. But even so, there was very little discussion of the power of the internet in the hands of our kids, especially teenagers arguably going through the most potentially creative time of their lives.

What if, instead of simply warning our kids about the dangers of the internet, monitoring (or trying to) their every keystroke, and telling them they can’t do this or that, we start by showing them what they CAN do online, how they CAN use all of the incredible tools available to accomplish what they want to accomplish. All of the incredible places they can go online, all the things they can learn, and everything they can share with the world (besides those racy photos or gossipy rants)?

As I shared with the group last night, my job as a parent is not to protect my kids from the world, it is to teach them how to protect themselves. Not just in a “defensive” way, but by taking the offensive, understanding the world so they can go out and make their own mark.

Fear, and caution, have their place. But you can’t let them rule your life. This is what we should be teaching our kids.

* If you are a parent of pre-college kids and are looking for a great resource for dealing with technology as it relates to your kids, you should make The Online Mom one of your regular stops on the web.

50 books in 52 weeks – not this year

12-Jan-11

I enjoy reading, so like many people I have set a goal for myself to read at least 50 books a year for the last couple of years. I read 45 last year, you can see my list on GoodReads.  As I was getting ready to publicly commit to another year of 50-in-52, though, I realized that I’m not really ready to move on from the books I read in 2011 2010.

It’s not that I don’t want to read anything new, I do. I’ve got several new books on my list, including David Siteman Garland’s Smarter, Faster, Cheaper, Neal Bascomb’s story of FIRST Robotics, The New Cool, and Hal Needham’s Stuntman! I’m also looking at some older books that I’ve never read.

But well over half of the books I read last year are still bouncing around inside my head.

In a blog post last October, Harold Jarche  expressed a similar sentiment in the context of conferences that he attends:

One thing missing in these discrete time-based events is that there is little time for reflection. … This presentation is followed by some immediate questions & discussions and a coffee break. Then it’s off to see the next presentation. Reflection, if it occurs, comes much later, and usually after the participants have gone home.

Replace “presentation” with “book”, and that his how I am feeling about the books I read last year.

During a pre-launch webinar for his new book Where Good Ideas Come From, Steven Johnson also talked about the state of reading.

Bill Gates takes a “reading vacation” to read. Ray Ozzie does the same thing. A very interesting strategy; usually when we read it is at night, when we are tired and have 20-30 minutes before we go to bed. Takes a couple of weeks to read, you lose the possible connections between the books you read.

All of this is my overly long way of saying that I’m not committing to 50-in-52 this year. Instead of moving on to the next conference, in my case a new year of reading only new books, I’m also going to spend some time quality time reflecting on the books I read last year.

What are your reading plans for 2011?

Update: Check out my  2010 Reading List lens on Squidoo.