Susan's Blog

Sunday, January 22, 2012

Milestones to go before I sleep

When Nat was a baby, and we thought we were just “typical” parents, we celebrated each milestone just as all parents do; we acted and felt as if he were the first human ever.  No one in the history of man had ever been as wondrous. Even though I had to buy stuff from to help me get through the day and stay awake for him – I could not sleep at most nights with his crying – I never felt giving up. He was our first baby, and the first grandbaby on both sides, and the first baby of my generation of cousins, and the first baby of all of my friends. Nat was “The Baby of All the World,” my mother used to proclaim — it didn’t make sense, and yet it makes complete sense.  Nat was The Baby.

To Ned, Nat’s nicknames were hooked to his milestones. As an infant, crazy young, he used to push up to standing, in my lap. I mean like just a few months old. Legs like little pistons: you could not keep him down. Ned called him “Stand-up Natty.” Each development yielded a new name: Crawling Mister, Walking Mister, Talking Mister. I loved those nicknames; they were so Ned: to the point and witty.  My nicknames for Nat were like me: mushy and lovestruck. I called him Baby Delight, Baby Guy, Sweet Guy (still use that one), Natty-thaniel, Natan-El (Gift of God), Sugar Boy… you get the picture.

Perhaps we clung to those milestones because we were so tickled by our otherwise unusual baby. For here he was, deigning to do these pedestrian baby things like actually crawling on time (7 months), babbling just right, etc. He never did become Play-Appropriately-With-Toys Mister, though I looked for it, waited for it with a disproportionate longing, as if I knew it wasn’t coming ever.  The longer it didn’t come, the more I wanted it. Until eventually the disappointment eclipsed all else.

I lived in this state of low-level perpetual disappointment in my firstborn son. It was like a low-grade infection that you just can’t ditch.  Somewhere along the way Ned ditched the “Mister” nicknames and we all just kind of grew up. The other two babies that came along had their very own set of nicknames, and nothing ever repeated. By the time we experienced Max and then Ben progressing steadily through all the milestones — including the toy one — we had already developed that serious knowingness that parents of disabled kids get. There was an additional wakefulness, a consciousness, a hard scientist way of looking at Max and Ben because when we looked at them we were also looking for Nat in them.

When did this sickly seriousness around Nat fade? I don’t know, but it did. Somewhere along the line we stopped seeing him in the cold harsh light of the neurologist’s office. I know I’ve written about this before, when the therapeutic gave way to just fun in our life with Nat. We went from Speech Therapy to Special Olympics. From Social Skills Group to Social Group. And Nat’s development took off. Almost the moment we stopped working with him and switched to playing with him, everything changed. He came back to us.

Talking Mister came to mind the other day, when I found myself stepping back and noticing his development, just the way I did when he was 10 months old. I looked in his Day Program notebook and I saw that he had broken a bottle at work (he stocks the coolers at a CVS), and then as more fell he began laughing, “which did not help,” the staff person wrote. Someone said something to me about how if he did that more he might lose his job, and it was like a knife in my heart. The laughing and getting into trouble phase had started when Nat was seven, waking up at 2a.m. and laughing his head off for no reason. So there I was, like back then, terrified about something happening that no one could fix. Nat was going to be derailed from his happy progress, once again, as always, by this twitch in his neurology.

I figured I ‘d probe a little and see where he was with the whole thing. “Nat,” I said that evening at the dinner table. “What happened at work today?”

There were those same absurdly huge blue eyes as wide and vulnerable as the sky. “You broke a bottle.”

“Oh,” I said, because even though I knew the answer already, it was still wondrous to me that he was actually answering the question, and accurately. Do you know how I longed for that, when he was two? I was a crack whore for words.

“Natty, did you laugh–”

“NOooo,” Nat said, before I’d even finished. The wide-eyed soft stare had become brittle and fearful. But I could barely keep from laughing, because it was a whole new milestone: Lying Mister.


Another incredible, entry Susan.

— added by Judy BF on Sunday, January 22, 2012 at 8:29 pm

I’m crying and laughing at the same time… I’ve looked forward to all the milestones w/ my boys -and then when their sister was born, and she progressed beyond her brothers… well…. finally the dx rolled in – and the first times I caught my boys in mischief – I smiled and loved they were doing things that would get them caught up in trouble – because these were the things that every boy did! I’m laughing and smiling thinking of Nat and his reaction to your questions… Way to go Nat! Way to go!

— added by Linda on Sunday, January 22, 2012 at 8:55 pm

You do tell a story well, Susan! Lying is indeed a milestone! To anticipate a negative response and change what to say…how the neurons must fire!

— added by Barbara on Sunday, January 22, 2012 at 11:11 pm

A good story.

— added by Janet on Monday, January 23, 2012 at 9:04 am

“I was a crack whore for words.”

What a sentence. And what a truth.


— added by Dixie on Monday, January 23, 2012 at 11:12 am

Thanks for another great post highlighting the importance of looking at things in a playful and positive light, which can lead to happier outcomes. Play and humor are great ways to bring people together and help people grow, and your post emphasizes that this goes both for adults and children touched by autism.

— added by JJ on Monday, January 23, 2012 at 1:37 pm

I’m so touched by this post. Having lived with this all those years I now laughed out loud when I finished. Way to go, Natty!

— added by Mom on Monday, January 23, 2012 at 2:45 pm

Mommy! You commented on my blog! I’m honored! xxoxx

— added by Susan Senator on Monday, January 23, 2012 at 2:46 pm

Thrilled to have found your blog, which I am going to read every word of. I once reviewed your first book on Amazon, and you wrote me a wonderful note. I never answered the note, as I received it literally the same day I gave birth to my daughter, Janey! And as luck would have it, or luck would not have it, or whatever, Janey is autistic, on the lower end of the spectrum (she is 7 now). My older son was originally diagnosed as having Aspergers, which I know think was one of a wave of overdiagnosing at that time, and he is now 17 and doing quite well. I’ve read your more recent book and loved it also. Thanks for all you do!

— added by Suzanne on Monday, January 23, 2012 at 6:22 pm

Many years back we realized our own Nate lied to us! Lies! Accompanied with smiles (or a straight face). Cue the academics! Teens. Lies. Oops. Flashback!

— added by Dadvocate on Thursday, January 26, 2012 at 8:41 pm

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