Susan's Blog

Sunday, June 27, 2010

Just Get Out There

After such a happy weekend, I ought to feel happy, but I’m not.  My feelings swirl outward and become thoughts — about Nat.  I feel that same 20-year guilt, still there, still unnamed, though I write and talk about it a lot.  I am still not satisfied with the shape my words have given this feeling, and this dissatisfaction drives me to write yet again.  My latest “cri de coeur,” a friend calls my blogging.  Yes, it is exactly that.  It is my heart asking in its own mute way, “WTF?”

I try to start outwards, looking at him, trying to match the inner feeling with what I’m seeing.  He’s laughing, he’s giddy with his own thoughts; but what are they?  I look at him and I see that Nat is so very alone, not engaged with anyone or anything.  I think in that same pattern, after all these years.  I think that I should take him on a walk.  I imagine the walk, down High Street, the long wait at the intersection, clammy skin, annoying cars.  I don’t want to get hot.  So I don’t do it.  I don’t say, “Nat, want to go to Starbux?”  I know he’ll want to, but I don’t say it. I don’t want to.  I’m trapped in my guilt and my inertia.

Meanwhile he moves from seat to seat, smiling, chatting, and we are all so used to it, but when you really think about it, it seems bad.  The old messages are still there:  the teacher who said that “anything he will do in life will only be because you have pushed him to do it.”  Something like that.  But no one pressures me like that anymore.  No one tells me what I should do with Nat.  Everyone assumes that I do it already or that there is nothing left to tell, that I am almost done.  Find him a good adult living situation, and you’re done.

I’ll never be done, probably because I don’t want to be.  Probably because of this same vague dissatisfaction, guilt, heartache, whatever.  Sometimes I feel like I waited for Nat my whole life, and when I finally had him, I didn’t know what to do with him.  Eventually I learned that I did know, and that there was nothing bad.  But days like this, the doubts spring up again, and it feels like an indistinct Something Bad has invaded again, like a sudden bad smell.  And suddenly, it’s not enough, I haven’t done enough.  And yet, here I sit.

The feeling sits there, entering through my eyes as I notice him making his circuit.  Maybe if it were Joyful House Stompies I would not feel this.  But what I’m seeing and hearing is Run-of-the-Mill-Talkies.  A lot of circling near the front door.  I’m noticing that he’s by the front door, as if ready to leave. He really wants to go to Starbux.

And now I know what I am going to do, and the noxious guilt starts to lift like morning mist.  You know, come to think of it, it’s not really that hot outside.  Maybe I’ll take just a little walk with Nat, see where we end up.


Oh how this speaks to me today! I fight this battle, too, with my little boy who is so outrageously active and hard to reign in. Sometimes, it seems so much easier to ignore the messages, to listen to my inner-sloth (who HAAATES to get hot & sticky!). Yet, when I take a deep breath and get moving with my boy…magic happens. Even if it’s only within myself.

— added by Niksmom on Sunday, June 27, 2010 at 11:06 am

I agree with Niks Mom…I always enjoy myself more than I thought I would when I take the effort to get out with J…even if it’s just for a ride in the car.

— added by Candy on Sunday, June 27, 2010 at 1:01 pm

Yes. Guilt, guilt, guilt. I feel it whenever I am not directly engaging my daughter. It has been there for 11 years and it ain’t going anywhere. Just to round things out, I feel guilty about the missed opportunities with my OTHER children because of my pre-occupation with engaging and/or not stressing my daughter with ASD.

There is no answer but yet I look for one, Everyday.

— added by Susan on Sunday, June 27, 2010 at 2:43 pm


I am lucky that although he is VERY autistic and it does feel like he misses out on more than he ever should… at the same time he plays. He plays on the computer, plays in the playground – swing, slides, plays with his collections of figurines – McD toys, star wars toys, in the night garden friends, little people etc. That he enjoys reading books and maps. That he can amuse himself.

I do wish often for more

— added by farmwifetwo on Sunday, June 27, 2010 at 4:14 pm

There have been times in the past seven years when I didn’t think we could make it through what was happening to our oldest son, that there would ever be any kind of peace for my family. No doubt, there have been heartbreaking events since he was born.

What I’ve come to realize however is that so much of the difficulties that surround this disorder stem from how I interpret it all in my own mind, how much control I have over how I react to different situations. When I’m overwhelmed, and I still often am, I try very hard to simplify. My goals are uncomplicated; to look back when I’m old and know that I provided my sons a happy and healthy childhood despite their collective autism; and to make certain I’ve secured a safe place for my adult child to live, and procured for him a job that gives his life some meaning. If my worries, my own private perseveration, do not relate to those issues, I try my best to let them go and move on, no matter how hard it is to do that. Every moment I’m immersed in that place keeps me from attaining those goals, and from enjoying the moment I’m in as much as possible. And finally, after many long years, there are many moments to enjoy.

There is no doubt in my mind, from what I’ve read in your essays, that you have attained the first of those goals- Nat had the best childhood he could have possibly had. It seems he is happy, in his own unique way. You’re halfway there- that is truly cause to celebrate.

— added by kimberlee mccafferty on Sunday, June 27, 2010 at 9:47 pm

We had a rough Saturday. Jared is poised for puberty, and it’s filling me with dread. It’s so hit-or-miss, getting ready to run errands was a shout-fest, but handling tasks is where he shines, and it calms him. He can be such a tyrant one minute, and so empathetic the next, it’s dizzying. We kept apologizing to each other throughout the night.

With the heat index reaching 110 last week, activities outside can be daunting. After such a combative day on Saturday, I had no qualms about a quieter, indoor Sunday.

On Sunday morning, he started to draw his own version of Green Eggs and Ham. I suggested he add the words this time. He copied the font painstakingly page by page, it’s not going to unseat the original, but it’s really something to see.

Doing your best and being satisfied with what you’ve done aren’t always the same thing. But you can’t beat yourself up ad nauseum, that will prevent you from doing your best. I hope you guys ended up at Starbux.


— added by lisa on Monday, June 28, 2010 at 12:07 pm

Sometimes the hangup, for want of a better although not more apt word, is that we put our feelings onto the kids and try to analyze what they want and what they are doing in that light. Instead, maybe there is a time for saying that, “in this moment, this is enough”, since that is what we do for ourselves. You can drive yourself crazy trying to put a more complicated meaning into every little nuance. Maybe Nat simply wants to go to Starbucks. Or not. Or you don’t, and it’s completely okay to say “no” or “we’ll go later”. He can handle it!

— added by michele on Monday, June 28, 2010 at 7:25 pm

True, but in this case I was not ruminating on what Nat wanted. I was expressing my own vague guilt and sadness about not wanting to do something with him. I wasn’t driving myself crazy; I was merely writing about a moment in time. I know he can handle not going when he wants to go. My point here was that I knew what he wanted and I didn’t want it, and also there was this guilt and sadness at the same time. Sometimes I just write about exactly what I’m feeling; that’s what I like to write about, because I find it very interesting.

And we did end up going anyway, and it was sweet. 🙂

— added by Susan Senator on Monday, June 28, 2010 at 8:07 pm

Guilt is a daily experience. Eat, poop, feel guilty.
Ben will also amuse himself… which is good and bad. Good, because life is there. I need to make dinner, do laundry, talk to my husband.
Bad, because it’s so easy to do this and listen to him “talk” to himself, seeming happy.
Then… you lay your head on the pillow at night and think of all the missed opportunities, and the times you talked about him in his presense like he wasn’t there.
Reading blogs of mothers who are so extraordinary doesn’t always help… but…I look at them like opportunities to learn from the best

— added by Jacquie on Tuesday, June 29, 2010 at 9:27 am

For me, motherhood is a huge percentage nagging guilt, but luckily also a lot of sheer bliss. The guilt about my sons with autism is a more complicated one than the guilt I feel about my NT son. It’s harder to nail it down, so harder to deal with it.

— added by Alice on Tuesday, June 29, 2010 at 11:37 am

I feel so much pressure to fill the everpresent void (which may be in my own mind). Is my adult son happy with his life? I don’t know. He is dependent on many others to support him. Some are wonderful, some are not equipped. Services and caregivers change frequently. One constant in his life is family.

— added by Jane in Wisconsin on Thursday, July 1, 2010 at 3:35 pm

Thank you, Susan. It’s like looking into my probable future sometimes 🙂

— added by Debbie T. on Saturday, July 10, 2010 at 3:32 pm

Guilt is such a toxin isnt it
I just found your blog through a friend’s reccomendation and am really enjoying it
Does Nat live at home
Also you are so pretty !

— added by K Floortime lite mama on Thursday, July 29, 2010 at 2:33 pm

Oh, it was like you were speaking my words. It’s so easy to stay in (and not get hot) and deal with our issues behind closed doors than to get out, get moving, and take ourselves into the real world. I have a huge guilt struggle between that and doing things with our other NT kids too. I wonder what I’m so afraid of and what is so paralyzing about that fear. Thanks for expressing what so many of us feel.

— added by Alysia on Saturday, July 31, 2010 at 1:40 pm