Susan's Blog

Sunday, December 5, 2010

Could have, wood have

Nat walks into the livingroom this morning, announcing himself in his own language, dressed in his signature yellow, shining like the sun.  I am flooded by de-light.  “Natty!”  I say.  “You’re so cute!”  Nat’s eyebrows go way up, as if he is concentrating really hard on the meaning of cute.

Ned and I agree that indeed, he is cute.  But then!  Oh shit!  A flash, a split second of something, sharp, ugly, and true, that has wedged itself like a splinter into my full, fleshy happiness and whispers:  –You’re treating him like a baby.

I can’t help it, I reply.  He’s cute.  He’s adorable.

-He’s 21, says the splinter.

I know.  But he is an unusual 21.  Besides, if I see him as truly 21, all 21, I feel a pang that I don’t want to feel.

-And that is?

Imagine what he might have been like by now.

-You have no idea.  This is who he is.

Well… I look at Max and Ben…

I don’t dare finish the thought.

-You are a terrible person, says the splinter. They are who they are, but who are you to say that Nat should have been someone else?  It’s vanity.  It’s chutspah.  It’s hubris.

I guess, well, since we’re talking about it — I look at Ned’s and my genes.  Or I think about what they contain.  The dark and light of Ben’s art.  The round warmth of Max’s.  Their lightning epiphanies, realizations about — everything.  The way they can do math (that’s Ned’s genes).  The way they laugh at my jokes — or the way they hate them.  The million different things they do and become and once were.

-And what does that have to do with Nat?  Isn’t he a million different things and going to become even more?

Yes!  But the boys are so close, genetically.

-I know what you’re going to ask.  Go ahead.  It’s okay to wonder. It’s okay to think it.

WHY did things end up so different?  Why?

-There is no ‘why.’  There is only what is. There is only who he is.  Exactly who he is.


I’m going out.  I’m going to ride.

-In this weather?

You’re just a splinter!  You can’t know what it’s like!

I know.  Because I was once a tree.  I could have been standing proud in a park, giving shade, dropping orange leaves in the fall.  But instead, I am just a metaphor for your conscience.

Now I feel my smile coming back.  The splinter floats free, as splinters do.  I bundle up and I ride.  The air is so cold, but I am dressed just right.  My trunk, legs, and arms are warm.  I only feel a few slashes of the wind here and there, and it is only cold like peppermint.  Every now and then there is an ache, a burning and a strain, a pop of knee, a lumbar pressure.  There is always, always, a little tiny bit of pain, but it’s nothing compared to the pleasure of just being here, exactly this way.  Once again, I understand.


I don’t generally use the words “cute” and “adorable” for my kids.

I have a friend who does regularly. Then again, she also refers to me as “adorable”, especially when I’ve done something thoughtful that most of her other friends wouldn’t have thought to do, and then I get what’s probably a deer-in-the-headlights look. (And I get “cute” right and left from a good number of people, so if my kids look enough like me, they’re going to get that in their 40s as well, right?)

I have to work in other ways to not treat one or another like someone much younger under certain sorts of circumstances, but two of the three don’t make it easy for me to “baby” them anyway. (At what point do I need to stop referring to a now-7-year-old as a “snugglebug”?)

— added by Julia on Sunday, December 5, 2010 at 11:13 pm

“There is no ‘why.’ There is only what is. There is only who he is. Exactly who he is.”

This is so beautiful. I love this post.

— added by Sarah on Monday, December 6, 2010 at 12:31 am

Wow, how ironic that I stop by here only to find a post about what hubby and I have been discussing for a couple days now. We are going through his toys and getting ready to give them to his ABA center. I realized only then that his toys are mostly baby toys. He is six! We have had these toys for years now simply because Nick in many ways is still ‘baby-ish’. He is in desperate need of more six year old type toys. Cars, blocks, dinosaurs, etc. Which is great since he now enjoys playing with cars. Six years it took him to roll a car across the floor…we have loved every second of him finally playing with his cars!!
I know that pang. I feel it every time I see a kid his age. To think of what we COULD be doing. But then maybe I would not get the immense feeling of accomplishment by him doing what he IS doing?? You know?? I mean, you would not tear up at the sight of a Typical 6yr old ice skating…but I sure did shed one when Nick skated! He overcame A LOT in that moment. I knew it, he knew it, his brother and dad knew it. It was truly a miracle.

Your young men ARE cute! All of them. 🙂 We are mothers. We can always tell our boys they are cute no matter how old they get LOL!

— added by amy on Monday, December 6, 2010 at 1:13 am

Every day I work hard at trying not to ask the “why”, as I’ve come to realize it’s so pointless, and just try to accept the “what is”. Sounds like you’ve really gotten there, I think I have a while to go!

— added by kim mccafferty on Monday, December 6, 2010 at 11:28 am

Your honesty is refreshing. I get so tired of reading blogs by moms (it’s usually moms) who insist that they’re happy with their autistic children just the way they are and they wouldn’t change a thing about them. I don’t have an autistic child, but I sincerely doubt their rosy words. I used to teach autistic teens and they were difficult. They were self-injurious. Some couldn’t speak. Some destroyed things and screamed. Some masturbated in public. None of them appeared to be having a particularly happy life.
Nat seems content but I’m sure if he could, he’d tell you he wants a different life – one where he could talk and have girlfriends and go places on his own without having to be supervised.
I think autism– real, serious autism — sucks, no matter what the self-proclaimed “aspies” say. I wish it didn’t exist and that the people affected by it were living better lives.
On a brighter note, I still tell my kids they’re cute because they are, despite the fact that they’re 16, 21 and 22. I’ll tell them they’re cute when they’re fifty, God willing, because they’re my babies.

— added by Sunni on Monday, December 6, 2010 at 7:50 pm

Interesting, Sunni. I have worked with kinds and adults much like the ones you describe, with the same kinds of behaviors and worse and I ADORE THEM. To see those kids make progress, learn, and become, in spite of us, adults, has been wonderful. And all of them have and continue to have, many many happy times in their lives. As educators, our job is to find the way to teach kids what they need to learn, to the best of their and our abilities. And to celebrate the little things. Loving the child who is is what parents do. It doesn’t mean that we didn’t or don’t want more for them at all. It is the unconditional love that parents give.
These kids with autism, severe autism too, are learning and growing everyday and their potential is unlimited. Susan, your words make so much sense.

— added by Michele on Monday, December 6, 2010 at 8:07 pm

I answered the phone this morning – a call from my daughter – I love talking to her in the morning. Lately she has been pretty burned out. Having a young adult with Autism, medical problems of her own AND turning 50 – Well the conversations have been full of emotion and of course, meltdowns in her family are contagious. The transition to adulthood for her 17 year old has been difficult.

I heard her voice and something I hadn’t heard for a while, a lightness had replaced the dark. She had discovered your blog and said she had hope. You gave her a REAListic view of what her life is.

This is her life. She wants the best life for my grandson and will do all the hoop jumping necessary to take care of his needs while not minimizing the needs of his twin sister. Balance is hard to come by. Thank God for her bike!

I have so much admiration for my daughter. She has courage and integrity and is just basically a very brave person.

I know her discovery of your blog was not just an “accident.”

— added by Linda on Tuesday, December 7, 2010 at 12:59 pm

your splinter speaks my splinters language.

— added by jENNIFER on Tuesday, December 7, 2010 at 2:02 pm

Excellent post, Susan. I think I started reading your blog about 4 years ago, and I’ve learned so much about my own feelings about my son from reading posts like these. You may thinking you’re exposing yourself as a terrible, splinter-engaging mother, but I think you are spectacular and gutsy. (Not the least of all for riding your bike in horrid weather.)

Secondly, I think Nat is spectacular, yellow is a good signature color for him. He has grown so much, I’m jealous of his social calendar. Lisa

— added by lisa on Thursday, December 9, 2010 at 5:16 pm

I think my baby will always be my baby. Just in a larger body. I can’t help it. That mothering instinct is deep in my veins and shows no signs of ever leaving. M. will just have to be “Bug” for the rest of his life and W. will have to be “Butterbean.” Even when they’re 30. 😀

— added by ASDmomNC on Thursday, December 9, 2010 at 10:54 pm

There’s absolutely nothing wrong with thinking our kids are cute no matter what the age. I have 4 grown daughters. I consider them all cute and my youngest with autism thinks she’s cute and doesn’t mind us calling her cute. Alright … well she is a girl, and maybe it’s easier to say girls are cute at any age, but I don’t see a single thing wrong with calling your 21 year old Nat cute.

Parents who have children on the autism spectrum may wonder about how their child would have turned out without the autism, but honestly, they wouldn’t be who they are without the autism, and their accomplishments are all the more special because of the obstacles they have to face.

Sunni, you may have worked with severely autistic teens, but you don’t have one of your own. I happen to have one severely disabled daughter who is 32, living in a group home, and one 20 year old with high functioning autism. Yes, severe is very difficult, but I can tell you that the people who work with my oldest daughter, have a very positive attitude and applaud the small accomplish she makes even more so than I do, because they are with her on a daily basis.

As for my 20 year old with high functioning autism, I will say she is probably happier than either of my neuro-typical daughters. She has friends. She has a full and active social life. She is happy in ways that most people aren’t. What are we searching for in life? What is really important after all? If one can find happiness with a disability, then there is success, and even the Aspies can lead full happy lives in spite of what you think.

— added by Sherry Rubin on Friday, December 10, 2010 at 9:41 am

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