Susan's Blog

Wednesday, June 11, 2008

What’s the Matter Here

All these cold and rude things that you do I suppose
you do because he belongs to you;
and instead of love, the feel of warmth
you’ve given him these cuts and sores that won’t heal
with time or
–Natalie Merchant

How much do our words sink in, and permanently lacerate? How resilient are the others in our lives? People say children just bounce back, but we all know how we carry around hurts from childhood, things that made us as screwed up as we now are.

I guess the thing I’m so worried about is something I said years ago when Nat was eleven and we were going through hell with the first onslaught of his aggression. This was when I first came up with the term “Living Under Siege,” referring to how imprisoned I felt because Nat was so volatile. I went around with a stomach ache from the fear. I was afraid he would suddenly hurt me or someone else in the family, or lash out inexplicably at a stranger and get us all in trouble. I was afraid someone (at his school) would hurt him while trying to subdue him. I was afraid we would, too, inadvertently.

I’m reminded of Rhett Butler, who, head in hands, is crying to Melanie about Scarlet’s fall down the stairs. Scarlet almost died from the fall, and the baby she was carrying did die. Rhett says, “And then, what did I do? What did I say?”

We all know what he said: Maybe you’ll have an accident. And then, just then, she did.

Here I am, head in hands. What did I do, what did I say, in the middle of a terrible bout of fending off Nat’s aggression: “If you don’t stop, I’ll send you away to live at your school. You won’t be able to live here.”

“No live at school,” Nat said.

I am beyond sorry. I can’t take those words back. I know I’m a drama queen. So be it. And now you know what’s the matter here.


You’re way too hard on yourself.

Hugs to you Susan.

— added by Someone Said on Wednesday, June 11, 2008 at 4:18 pm

Susan, I read your book and have been reading your blog for well over a year. Both convey what an absolutely loving and devoted mother you are. Please stop being so hard on yourself for words you may have stated in anger or frustration (years ago) especially when dealing with autism. You are feeling so much mommy guilt. ALL parents make these mistakes, whether they have children with autism or not. Nat has grown into a handsome young man. Soon the next emotion you will be writing about with Nat will be pride and how everything is just fine. Sending you my best wishes always, Sharon Jones

— added by Sharon L. on Wednesday, June 11, 2008 at 4:23 pm

I think surely Nat at 11 was different than Nat at 18. You never would have let him live at school then because it wasn’t appropriate for him then. But now, it is, and you are.

I’m curious about what Nat thinks about going to live at school now. Many other kids his age will also move away from home when they go to college, and it’s scary and wonderful at the same time. I wonder if it’s a similar feeling for Nat.

And, I also think you’re way too hard on yourself. And I don’t know too many mothers who aren’t.

— added by Julie on Wednesday, June 11, 2008 at 4:31 pm

We have all said things to our kids that we’d like to re-wind and erase! when our kids have special needs, I think we are hyper-aware of those comments. When I get frustrated at my oldest (adopted) son, I worry a lot about what I’ve said to him, wondering if he’ll think it has to do with being adopted.

I don’t think you are “making” Nat live at school. You are giving him a chance to have more independence, as most parents of 18 year olds do.

I also think with any major life change like this, there’s no way around having those sad, stressed, regretful times, and I wish I could send you some chocolate or herbal tea or whatever might help.

— added by Mom to JBG on Wednesday, June 11, 2008 at 5:53 pm

I bet you’ve said things to your other boys too that you wish you could take back. WE ALL DO! It is human, don’t beat yourself up. Nat know you love him, I know it.


— added by Anonymous on Wednesday, June 11, 2008 at 5:58 pm

I remember losing it and yelling at my NT daughter once when she was complaining about Jack. I asked her what she wanted. Did she want him to go live in an institution? As soon as the words spilled out the guilt poured in. Damage done. 🙁

We all say things we regret to our kids. (Or at least I hope so.) Maybe it prepares them for this imperfect life?

90 days from now all will be fine. Chin up. Keep walking.

— added by Judith U. on Wednesday, June 11, 2008 at 10:49 pm

Susan, my son, who turned 10 in March is exhibiting more self-injurious and aggressive behavior than I’ve never seen before. I said the same thing to him just last week. “If you don’t stop, you can’t live with us.” My 8 year old son was in the room and he immediately defended his brother. “Mom, he’s autistic and going through a bad time, do not make it worse for him, he is NOT leaving us!” So, you see, I will reflect on this day too, with guilt and sadness. But, I believe, the day will come.
All my best to you Susan.

— added by Anonymous on Thursday, June 12, 2008 at 6:45 am

Welcome to the human race, my friend. The other day I called one of my daughters… dare I say it?? (whispering) a jerk… She was hitting her little sister and tormenting her and I flung out the word like a harpoon then wished I could turn it upon myself. Have you read Barbara Fischkin’s latest on HuffPo = about some new things she’s doing for 20 year old Danny and how it has helped his behavior? I know she’d be more than happy to talk to you. There’s much help available to Nat and plenty of us willing to come to his aid and yours. You’re a good Mom – don’t beat yourself up. You’re a human woman – and sometimes we let of steam and then wish we could take it back.



— added by Kim Rossi Stagliano on Thursday, June 12, 2008 at 7:21 pm

You can be guaranteed that once a child is in residential in Mass. the center will not follow any biomedical protocol. Most parents are denied this request even when their child is in a private center day school. Sad but true.

It’s also pretty clear that since Nat is given ice cream no biomedical is followed anyway.

— added by Anonymous on Saturday, June 14, 2008 at 9:05 am

Yeah, we don’t follow any biomedical treatments for Nat, so that’s not really an issue for us.

— added by Susan Senator on Saturday, June 14, 2008 at 10:38 am

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