– Parents in trenches of autism services – Aug 10, 2005

I’ve never been one to embrace the “mainstream”. As a kid, my favorite button had the statement “Why be normal?” (followed closely by “I refuse to grow up”). I recently saw a postcard in a Hot Topic store that said, “You look at me and laugh because I’m different. I look at you and laugh because you are all the same.”

With an autistic child, the whole concept of normal and different takes on a whole new perspective, but for me it has really been an excuse (as if I needed one) to explore what it means to be different in a world of normality and normal in a world of difference. Though I’m sure Zeke’s life (and the rest of the family’s) would have been much different had he not been (become?) autistic, I can’t really say that it would have been “better.” Sure, we’ve missed out on some things that everyone else takes for granted, but at the same time we’ve experienced things and take things for granted that most people can’t even imagine. (Can you tell, I’m a glass half-full kind of guy?)

So what brought about this little rant? A couple of quotes from – Parents in trenches of autism services – Aug 10, 2005:

Years later both say that vacation served as an adjustment period and a mourning period for the life that David would never have.

“We know that David will never be normal. He won’t be mainstreamed,” he said. “But he is in a good program, receiving good therapy, and he is picking up good skills. While he will never have a normal life, our hope for him is that he is able to live in a group home and have some kind of a job.”

I don’t mean to trivialize the nature of autism and the challenges and changes it creates, but there is incredible joy to be found in what most people think of as tragedy. For example, I would be willing to bet that the parents of autistic children know more about their children (both autistic and neuro-typical) than “normal” parents of “normal” children will ever know about theirs. We are forced to become more involved, to understand the how and why of our childrens actions and abilities.

3 thoughts on “ – Parents in trenches of autism services – Aug 10, 2005

  1. Hi Bret.I certainly understand your perspective and agree with most of what you have written here. However, my concern and “regret” and “dissappointment” comes from knowing that my child is suffering. As parents we’ve learned more than I thought possible and that has been great – but it hasn’t helped our son much. He’s non-verbal, self-injurious, and just generally unhappy. Throw in the fact that he’ll probably be placed in a home at some point and may have sub-optimal care once we pass away and it’s hard to stay optimistic.That said, it is hope that keeps us alive.I just started reading your site. Looking forward to reading more…-John,


  2. While we’re doing everything we can to assure our son a more “normal” life, I still think of his ASD as a gift. I get to celebrate a new step forward every day. When I look back on the last year or so of biomedical treatment, I see miracle in progress.


  3. John,Hope is certainly key, and I agree it is sometimes hard to stay optimistic. If you had asked me what I thought 10 years ago, when we were about a year or two into the whole thing, I’m sure my answer would have been different. We didn’t know if Zeke would ever be verbal (he is), and if so would he ever be able to converse and show emotion (he does, in his own way of course).We’ve been fortunate so far, but like you we are also thinking ahead. Will he be able to live on his own? No way to know yet. Will he be able to have a meaningful career (think Temple Grandin), or will he have to settle for something more mundane. And, yes, we also think about what will happen when we are gone. Fortunately for us, Zeke has a best friend in his younger brother Ian and this relieves some of that.


Comments are closed.