Skip to content

Parenting is parenting

I started blogging about autism, and being the parent of an autistic son, 5 years ago. My main goal was to help myself make sense of it all, to understand my own feelings about my son’s autism. Here is some of what I’ve figured out.

I hope it helps.

Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean.

How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc. It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing.

A few things you can expect to hear from others, or read in blogs, etc:

  • “If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
  • “If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”
  • “Why are you trying to mainstream him at school, he would be better off in a special placement.”
  • “Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”
  • “You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
  • “Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”
  • “You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
  • “Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”

These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.

In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause).

Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure.

These are all things you will have to decide for yourself.

As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure (or “recover”) him through diet or other medical treatment.

There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy.

Importantly, the vast majority of these advocates are not autistic themselves.

Once you realize this, you will discover a separate world of autistic autism advocates. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured.

You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.

A while back, autism blogger Lisa Jo Rudy 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.

Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent.

Everything else is just details.

Tagged , , , ,

Autism and “Drive”

Most autism interventions focus on making the child “more normal” or “less autistic”, and this is where many of the problems come in. (I’m sure parents who try to make their “geeky” kids more athletic or their “jocks” more academic run into basically the same problem.)

Earlier this year I read (and reviewed) Dan Pink’s latest book, Drive: The Surprising Truth About What Motivates Us. Addressed primarily at the world of work, and geared toward leaders / managers, I also read this from the perspective of a parent. After all, what is a parent if not a leader for their kids.

A key part of Pink’s argument is his defining of the three things that makes for meaningful work: Autonomy, the pursuit of Mastery, and Purpose. I see no reason to think that this is different for those with autism.

And yet….

As our typical kids grow, the level of autonomy we grant – and that they demand – increases. Our autistic children also demand that same autonomy, but we are more reluctant to grant it.

The same is true with the opportunity to pursue mastery. Because our autistic children’s interests and what they wish to pursue is often quite unusual, overly specific, or otherwise outside the realm of what we ourselves are comfortable with, we often try to dampen or redirect.

I’m sure you can guess where I’m going with “purpose” as well.

Much of our own personal success has come from accepting our son’s oddity in interests, giving him the autonomy to pursue those within the bounds that any child must live within, and realizing that even though we have no idea what purpose he has in mind for himself that he does have a purpose in mind.

That, I think, is the power of the message in Drive. Not only for parenting an autistic child, but just parenting in general.

This is a slightly modified version of a comment I originally posted as part of the New Yorker Book Club discussion of drive, specifically an article entitled Reading “Drive” With Autism in Mind.

Tagged , , , ,

A theme for Autism Awareness Month

Every year when April – otherwise known as Autism Awareness Month – rolls around, I ask myself, “Awareness? Awareness of what exactly?” Most times I forget my own advice and try 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 times I just bail on the question altogether.

This year I decided to try something different. Instead of trying to go “big picture” awareness, 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 autistic people are just people like everyone else, with the same unique needs and desires as anyone else. It seems fitting that I use that as my theme.

Everyone is different, of course. The challenge with autism is that autistic kids and adults 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 autistic people are just people like everyone else, I will consider my efforts a success.

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

Tagged , , , , , ,

Learning from failure (is overrated)

Failure is not a rite of passageFailure and the fear of failure are two completely different things.

That’s what I wrote in my copy of Rework at the end of the “Learning from failure is overrated” section. It came to mind last night as I was reading Children With Disabilities and Making Mistakes. In the article, Zach brings up one of the (often true) stereotypes about parents of disabled kids – overprotectiveness – with some thoughts on the importance of mistakes.

Parents don’t realise how them being overprotective is in fact harmful to their children’s development. The number one way people learn, yes including those with disabilities is by making mistakes. If people are not allowed to make mistakes they will never learn. Parents of children with disabilities often protect their children from being able to make mistakes, thus they never learn.

This is, according to the guys from 37signals, a common misconception. What you really learn from, they say, is success.

Even though these two things sound like – are – opposites, there is a common theme that unites them: you can’t fail or succeed if you never try anything. And that is really what overprotective parents are guilty of: giving in to their own fear of failure and not letting their kids try things. Sadly, this approach more often leads to mediocrity than to excellence.

And the last thing kids need, especially kids with disabilities, is their parents dooming them to a life of mediocrity.

Tagged , , , , , ,

Kids, sacrifice, and the master’s journey

I don’t remember exactly where I read this, and I’m paraphrasing a bit, but this little anecdote captures the essence of mastery, and the sacrifice that often goes with it:

A world class, and world famous, dancer was approached by an excited fan following a performance.

“You were fantastic!” the fan said. “I’d give half my life to be able to dance like that.”

“That’s exactly what I did,” responded the dancer.

Ian competing on TrampIf you are the parent of a child involved in athletics at the elite level, or an adult who was one of those kids, you know exactly what this dancer is talking about. My own personal experience as a parent is with gymnastics.

My son was (is) very talented on the trampoline (he was a national champion at his age / level), but when it came time to make the move into “elite”, he recognized that he wasn’t willing to make the sacrifice demanded of that level. We know plenty of others who chose to make that sacrifice.

(As an aside, there is quite the business in “online education” for those young athletes who are unable to attend school – middle, high – because of their intense training schedule.)

The hardest part of embarking on the master’s journey is the knowledge of the sacrifices you must make, the things that you must give up or resign yourself to never experience. That is why I think it is so much easier for kids – or younger people – to commit themselves to that journey.

As parents, we have a responsibility to make sure that our kids have a “childhood”. Many times this takes the form of making sure they are “well rounded”, and don’t spend too much time on any one thing. In other words, setting up roadblocks on the master’s path.

How much of this is because we really think this is best for our kids, and how much of it is an expression of our own fear of the tough journey?

Tagged , , , , ,

The importance of teachers and coaches

How many times have you heard someone say, “Those who can’t do, teach (or coach)”? How many times have you said it, or thought it? I think we all probably have at some point in our lives. Except for those who know early on that what they want to do is teach or coach. They know already that teachers and coaches are valuable for their ability to teach and coach, independent of their ability to “do” what they teach or coach.

Over the weekend I saw the video “What Teachers Make” that tackles this question head on. (Found via Seth’s Blog.)

Back in December 2008, I wrote about Malcolm Gladwell’s Q&A with ESPN during his Outliers book tour, in which he had this to say about coaches:

I always find it incredible that an NFL team will draft a running back in the first round, give him a $10 million signing bonus, and get, maybe, four good years out of him. Suppose you spent $10 million finding and training the equivalent of Mike Leach — someone who could create a system so good that it could make even the most mediocre athletes play like stars. You could get 40 years out of him.

Good teachers and coaches are invaluable to our children. And to adults, if we are smart enough to go out and find one.

Tagged , , , , ,

Which do you fear more, failure or mediocrity?

What motivational methods make some of you cringe (or worse)?

This is one of the questions that Dan Pink posed to the group participating in his live chat at The Book Club on the New Yorker. In response to the “Don’t make mistakes because I (mgr,owner, boss) will think less of you” motivational method, he said:

That’s one of the most insidious, imho. To me, it’s one of the greatest flaws in organizations. People are more scared of failure than of mediocrity. It should be the reverse. (emphasis mine)

Making a mistake is like breaking a leg. It happens and you fix it. Mediocrity is like a chronic, cancerous disease that gradually destroys you and from which recovery is far more difficult.

In the short term, mediocrity is “safe” and “going for it” is not. Or at least it doesn’t seem to be. (I can’t go for it, what if I make a mistake?)

Personally, I’d rather get a few broken bones along the way than spend my life trying to avoid those things that might cause them.

How about you?

Tagged , , , , ,

Rework (a review)

Front cover image - Rework

Rework is my kind of book. Written by Jason Fried and David Heinemeier Hansson from 37Signals, it has several chapters  made up of a bunch of short essays (most less than two pages) that each dive into a very specific idea or question related to the chapter. And pictures, lots of pictures.

Much of the content comes from the personal experiences of the authors over the past 10 years. To say that their approach to their company is unusual and unorthodox (at least compared to how you are usually told you should run a business) is an understatement.

The following essays in the book give you an idea of what I mean:

  • Ignore the real world (p. 13) – “The real world isn’t a place, it’s an excuse.”
  • Why grow? (p. 22) – “Small is a great destination in itself.”
  • Scratch your own itch (p. 34) – examples include James Dyson, Vic Firth, and Mary Kay Wagner
  • Embrace constraints (p. 67) – “Constraints are advantages in disguise.”
  • Throw less at the problem (p. 83) – “Your project won’t suffer nearly as much as you fear.”
  • Meetings are toxic (p. 108) – OK, we already knew that
  • Underdo your competition (p. 144) – “Do less than your competitors to beat them.”
  • …and many more…

The individual essays read like blog posts, and they are collected into chapters that could most easily be compared to tags on a blog. The chapters are organized in an almost, but not quite, chronological order based on when you might need the info as you grow (or don’t) your business. The first time through I read the book front to back, but it doesn’t really matter what order you read them.

Though aimed squarely at starters (not entrepreneurs) who want to start a business (not start a startup), Rework contains valuable ideas and insights for anyone who works, whether for themselves or for someone else. Big companies likely will not be able – or interested – in implementing many of the ideas, but anyone can take the lessons and make a difference in their corner of whatever company they find themselves.

The design of the book is also a lesson in the unusual; about the only typical aspect are the inside flaps on the book jacket. For example, when I started reading the book, I immediately had a feeling that something wasn’t quite right. It was only when I finished the book and saw, on the last printed page, the copyright page that I realized the source of that feeling.

Fried and Hansson have pulled a George Lucas, dispensing with all the upfront crap that you usually have to get through to get to the good stuff. Two pages of praise, and then the Table of Contents. Not even a title page. Talk about getting right to the point!

If you haven’t guessed already, I strongly recommend that you read this book. It deserves the place its found on bestseller lists. You may agree or disagree with what they have to say, but they will definitely get you thinking and asking yourself questions about why you do what you do and how you do it.

Update: My review was mentioned on Signal vs. Noise in the post Interesting tangents from REWORK readers.

Tagged , , , , ,

A checklist for checklists

It’s easy to say, “Make a checklist for your complex process and use it”. It’s another thing altogether to actually make a checklist that is good and that works.

One of the things that I like most about The Checklist Manifesto is that it recognizes and addresses the challenges inherent in designing a good checklist. In fact, a good part of the story revolves around making the WHO surgical checklist a good one. In the acknowledgements section of the book, Gawande credits Boeing engineer Dan Boorman (who is also mentioned in the book) as an “essential partner” in the ongoing development of new checklists, and from the looks of it they’ve been hard at work.

Most relevant to my ongoing thread here is the Checklist for Checklists, pictured below. If you have decided that checklists can help you, this is an excellent place to start as you begin the process of developing your checklists.

Tagged , , , ,

Simplifying the execution of complexity

My review of Atul Gawande’s latest book The Checklist Manifesto focused, by design, on the broad scope of the book. Within that “big picture” lesson, though, are many smaller, more specific lessons to be learned.

For example:

No, the real lesson is that under conditions of true complexity – where the knowledge required exceeds that of any individual and unpredictability reigns – efforts to dictate every step from the center will fail. People need room to act and adapt. Yet they cannot succeed as isolated individuals, either – that is anarchy….

[U]nder conditions of complexity, not only are checklists a help, they are required for success. There must always be room for judgment, but judgment aided – and even enhanced – by procedure.

During this discussion, he refers back to what he had learned from the skyscraper-building industry, that they had figured out how to put an understanding of complexity into a series of checklists. That they had, in Gawande’s words, “made the reliable management of complexity a routine.”

What makes this even more fascinating is how the checklist, the lowly checklist that Steven Levitt had no interest in (until reading this book), can help simplify the execution of complexity even when the team members have never before worked together.

Just think what they could do for a team that works together all the time.

Tagged , , , , , , ,