Susan's Blog

Friday, January 13, 2006


Contrary to the popular bits of wisdom floating around the special needs world, I have come to believe that my son’s autism is not some Blessed Journey I have been chosen for or Sent on — not that there’s anything wrong with it, as Jerry Seinfeld would say. I am writing this with a big sigh and a full heart, because I certainly have thought all those things, and glommed onto them at one time or another in my hour of need.

But coming to terms with Nat’s differences (the most obvious one of which is his fairly severe degree of autism) is a moving target. When he was little, the coming to terms was about finding out what the heck was making my child unable to enter new places, or play with toys in a conventional way. When he was seven, we grappled with his waking up every other night laughing hysterically, unable to get back to sleep. When he was ten, the coming to terms was about figuring out why he was aggressive seemingly out of the blue at times. When he hit puberty, I found myself dealing with teaching a teenage boy the rules of privacy.

But here’s a bit of perspective that has recently occurred to me: it has taken me much longer coming to terms with my own quirks and issues. I have been struggling for twenty years with certain discouraging tendencies in my personality, and have had to learn the hard way what my life’s lessons might be. That’s a lot longer than anything I’ve had to deal with regarding Nat. So given the logic that maybe I was “chosen” to be Nat’s parent so that I could give him an allegedly good life or so that I could learn things that perhaps my soul needed to learn — wouldn’t it then also be true that I was chosen to occupy this particularly challenging mind of mine? Yet no one thinks to say that to me.

Last night Nat and I were reading together, and it was very enjoyable. It is not always this way for me, because of the way Nat struggles over words that I thought he knew already and he spaces out and it takes a really long time to get through a Level 2 story. But last night I had a lot of time, nothing pressing to do, and I relaxed, which was easy because Nat was smiling as we began Peter Pan. He was pretty animated (for him) as he read, and nice and loud (sometimes he will only whisper the words). As I looked at him, my mind traveled back to a vision of Toddler Nat, and how delightfully cute he was, and how often we read together back then. Suddenly my mind melded the two images of Nat, and just connecting them together, I felt supremely happy. I realized that at that moment, it did not matter at all that Nat and I have a lot of challenges to get through, together and alone. All that mattered was that he was still Nat, the same boy that I loved so easily when he was patently adorable, before I knew about autism. He is the same boy, and that is all the Life Lessons I really needed last night.


You’ve left me feeling nostalgic for the days when I read to my son, who is now 15, much taller than I am, and won’t be home this weekend because he’s going to a wrestling tournament with his high school team. How quickly they grow up!

For another perspective on the “Welcome to Holland” essay, here’s a critical response that asks why our society exiles to “Holland” any family that doesn’t meet its concept of perfection.

— added by Bonnie Ventura on Friday, January 13, 2006 at 10:31 am

Those are the moments, aren’t they? Sometimes you can live off those moments for weeks. Sometimes you have to.

And here’s another take on the “Holland” essay (which, I have to admit, I have come to loathe):

— added by MOM-NOS on Friday, January 13, 2006 at 11:02 am

I must second the loathing—Holland Schmolland indeed. I also wince when told “Charlie chose the right parents!” (implied: glad it’s you not me). Autism is a journey with a rough, seasickness-inducing currents and, while I’ve learned to enjoy the travel, I always make sure I have a flotation device near at hand.

— added by kristina on Friday, January 13, 2006 at 11:36 am

Yes, no joy in Holland here. I know I am not the envy of any of my friends for the pleasure I might derive from sniffing a tulip or two. The joy I find in my son, now 6 y/o, comes in those quiet moments we share when I am not being confronted by how my reality differs from the rest of the world. It is in the times that he and I walk into a model train show (what is it about trains and autism??) and see the joy on his face as he runs from layout to layout, trying to get in the perfect spot to stim off the train wheels as they roll by. Yes, it is sad that he doesn’t want to talk to the nice men who want to tell him all about how they created this display, but there is such happiness in his eyes as he watches the trains chug by, like they are speaking a special language that only he can understand. I love to see him jump off the bus in the afternoon and run into the house, his safe place, where he can just be himself, talk his nonsense and have his hotdog, bread and butter, and ketchup (his afterschool ritual). Do I think I have more joy than other moms b/c of Sam’s autism? Absolutely not, but there is joy, and when it comes, it is cherished and held close to heart, as we know it may be awhile before it comes again. Thanks for this post,Susan, it was very touching to me.

— added by Sam's mom on Friday, January 13, 2006 at 1:42 pm

Hi Susan:

It must be the time for nostalgia. I just wrote a post about reflections and parenting a special needs child on my own blog this morning. People say that we are chosen or that we will have crowns in Heaven for taking care of our child. To me that implies there is something really bad about the child. Nat and Billy Ray and all special kids are who they are. We love them as they are and just do what we can to meet there needs. That doesn’t make us special it makes us a parent who loves her child.

— added by peggyloumorgan on Friday, January 13, 2006 at 3:31 pm

I, too, cringe when people tell me how lucky he was to have me. I feel so limited, so inadequate when I look at the picture of his needs and the skills I have to meet them.

I ask myself why the universe chose me as Jakie’s mom. I’m a single woman with a modest income. After deciding upon high-tech adoption for a second family, I found myself not only the mother of twins but the mother of a special needs child as well. WHAT was the universe thinking?

Yes, as a teacher (and previous parent) I am well aware of developmental norms. More importantly, when I have questions, I know how to research answers. And, I’m an avid student myself, eager to learn new theories and techniques to help my son.

BUT…if the universe truly had a deliberate, intelligent hand in this, I would have not been the sole breadwinner. I would be independently wealthy. I would have the patience of Job and the energy of Taz. And I would have a full time nanny on board to help with his sister, who is already showing signs of jealousy over the extreme attention her brother receives from everybody.

That being said, I can appreciate that people offer that statement up as an affirmation that they have faith in me to do the job. Such sentiments are far better than the snide, “You asked for it” remark. “No,” I reply, “nobody asks for their child to be challenged.”

— added by Susan on Saturday, January 14, 2006 at 1:34 am

Lovely post Susan:)

When I hear people say “God must have thought you would be the best one for the job.” I get angry to be honest. When people say that I tell them straight away, “No that’s a bunch of bull, life happens and sometimes things happen like Autism.”
I totally relate to your post, what a great post:)

— added by KCsMom on Saturday, January 14, 2006 at 1:37 am

Susan, Thanks for this great post . . .

The idea that we or our kids are “chosen” or “special” or “god’s little angels” or “indigos”, or whatever else is said, is so deeply double-edged.

As Kristina points out, there’s a deep subtext, “So glad it’s you, not me.” And, along with that, the idea that they’re off the hook in providing any help because you’ve got it under control, because “you’re so special, so great at it.”

And, as the other Susan said, if there were some divine plan at work here, we’d all be millionaires . . . or at least we’d have the extra set of arms of the mother goddess Kali.

— added by MothersVox on Saturday, January 14, 2006 at 3:14 pm

I’ve run through a wide range of views on how I came to be the mom of my Ben (which is Hebrew for “son”…cool, eh?). In my journey, I have come across the teachings of Kabbalah. And in those teachings, I have found solace. I may have chosen to accept this position before my son or I were placed on Earth. I may have been chosen for this task. Perhaps for my own sake, or solely my son’s, or perhaps for both of ours.

How others view our life is really theirs to deal with. Their life’s paths are theirs alone, just as my path is mine alone. We each learn to live and traverse our path. And if for a time my path is intertwined with someone who has extra challenges in this world, then that is indeed my path.

But the other day when he was pushing my buttons…….. I realized that it can be easy to momentarily forget the joyous moments and get knocked over by the frustrations, irritations, etc.

My Ben is 7, going on 8. He may not be able to have a normal conversation with just anyone, or anyone at all. He may have skills scattered across the world. (And yes, what IS it with trains?!?) But, he is uniquely and forever BEN.

— added by Dorie on Monday, January 16, 2006 at 9:00 pm