Susan's Blog

Monday, October 14, 2013

The waiting is the hardest part

I keep going to an image of Nat from yesterday when he was home visiting, of him sitting on the couch across from me, watching. Waiting. He was waiting to be told what would happen next. If we told him nothing, then nothing would happen. He would just continue to sit, watching, waiting.

I see this image of Nat, perched, unoccupied, and a softly creeping sadness wraps its way slowly around my heart and throat. I try to move away from it, to detach my body from its long sticky reach but it is there nonetheless. I have been running from this picture for two days now, maybe longer. In the middle of organizing my third autism parenting book, my creativity chokes and withers in the face of Nat and his expectant eyes, as wide and blue as the sky around us. I am haunted by that open, trusting look he gives me. Don’t write that, I hear. Write me instead. Tell me what is, what I am doing. What is next.

Horribly, I ignore him sometimes. I can’t do it. I just can’t always do it. Just as when he was a little boy and I was told to interrupt his self-stim talking and “give him a model of something real to say,” how horrible and judgmental and huge a task. How utterly unachievable. I felt/feel that I must live for both of us. Just like when he was a baby growing inside me. Eat for two, breathe for two (as the Natalie Merchant song goes).  It is an incomprehensible task.

I’ve been raised (growing up with Nat, that is) to believe that he needs. Constantly. That it is up to me to give him something. A frame within which to live. Structure. “They” need structure. So where does structuring his day end and turning him into my puppet begin?

I think that what is making me sad about this staring, waiting Nat is that this passiveness is the disability. This is the thing I can’t fix. Because, thank God, he can breathe on his own, eat on his own, walk, communicate (somewhat), and even work. There has been enough intervention and education and especially love and work to help get Nat to be able to do so much. But it feels like there is no amount of anything that can get Nat to stop waiting for others — all of us who have trained him to listen to us and learn from us — and just go ahead. That mechanism comes from within and I don’t know how to fix it or how to stand back and let it — be?


In Ido in Autismland, Ido has a section on initiation in which he talks about how he is trapped in his body, knowing what needs to be done or what he wants to do but somehow just unable to initiate the action without outside influence. I have the ebook on my iPad which my son has at school right now so I can’t quote it for you completely. Ido in Autismland is a great book for learning about what’s going on inside our very complex kids. A kind of permanent prompt dependency outside of their control.

— added by Peg Pickering on Monday, October 14, 2013 at 10:32 am

My son does this too. I feel it is due to years of ABA training. Complete prompt dependency that was never able to be faded. ABA is great but it can be a double edged sword. There is no good solution. I think with some kids the prompt dependency just sticks and we can never really get rid of it.

— added by JJ on Tuesday, October 15, 2013 at 7:47 am

Susan, this one sentence in particular really got to me- “So where does structuring his day end and turning him into my puppet begin?” I constantly wonder how much I should attempt to keep him engaged, or just let him be. I have a feeling I’ll be working on this for a very long time… Thanks for sharing this!

— added by kim mccafferty on Thursday, October 17, 2013 at 12:07 pm

Here I am, doing this. If I do that, will I still be me? That seemed to motivate, or de-motivate, my son when he was a little guy. Now he is 22, and ABA/compliance is a big influence, for sure. I’ve pushed for “leisure skill” -oriented programs, and utilizing options so he can practice making choices. Sadly, it is easier for schools and Agencies to work on compliance and ADLs. And that is a real, crying, shame. Consider the impact this has on developing sexuality, and exposure to abusive situations. . .

— added by VMGillen on Thursday, October 17, 2013 at 1:40 pm

Susan — I’m a stranger on the internet and know nothing at all, about you, Nic, or autism, really.

But, “I felt/feel that I must live for both of us. Just like when he was a baby growing inside me. Eat for two, breathe for two (as the Natalie Merchant song goes). ”

scared me a little bit. In hearing the stories of depression/suicide/murder in caretaking relationships, I have worried that this essential conflation of self & the person being cared for can lead us astray. I think mothers always feel like this a bit, that their child is a part of them, feeling their joys and pains, and it’s for each of us to decide when it’s too much. I hope you have lots of real life support, and hope that you will talk to someone.

— added by bj on Friday, October 18, 2013 at 12:22 pm

Oh, and I made it abundantly clear that I know nothing, by calling Nat, Nic. My only defense is that I do that with my own children, too.

— added by bj on Friday, October 18, 2013 at 12:24 pm

You are very kind to reach out like this. Thank you. All I can say is I do have help, but sometimes I do feel a lot of other stuff anyway. No matter how many blessings we have, this life is not an easy one. That’s why I write. But I’m okay, and I’m touched that you wrote to me. 🙂

— added by Susan Senator on Saturday, October 19, 2013 at 7:23 am

I’ve been trying to see life from the side of a parent, as much as I can, although my child does not have autism. There are lots of suggestions to ease the prompt dependence, some of which would probably work, and some not. I guess you can gather from Nat’s affect, whether he is happy when you give him cues to help move him along. I think some individuals just are inclined towards prompt dependence and some aren’t. My husband sometimes is;) Just putting an idea out there is enough to get him started sometimes. Some people never initiate anything, including activities that they love. I would rather err on the side of giving suggestions and cues than let them just do nothing (some doing nothing is fine, it’s relaxing, but too much can be difficult) knowing how much enjoyment and connection comes once moving. It’s hard when you’re at home alone though. When Nat is at his group home, there is the hustle an bustle of the group which is a natural cue. There’s also the tactic of really talking up what someone else is doing that rubs off on those who need more cueing. But it’s different when it’s not your child, it has to be. All worth thought and consideration.

— added by Michele on Monday, October 21, 2013 at 8:25 am

Michelle, I am so glad when you weigh in, it gives me ideas and hope! 🙂

— added by Susan Senator on Monday, October 21, 2013 at 8:33 am

Peg, I’ll try to find this online! Thanks!

— added by Susan Senator on Monday, October 21, 2013 at 8:34 am

Ido in Autismland is available from Amazon. Ido also has a blog at blogspot. Google Ido Kedar and you’ll find him. We’re on our way now to see Soma in Austin….Soma developed the Rapid Prompting Method that allowed Ido to learn to communicate and I’m hoping to start the process with my 17 yo son Mit. Will keep you posted! Would love to get these trapped boys freed!

— added by Peg Pickering on Monday, October 21, 2013 at 9:01 am

Oh, Sue. This is beautiful and haunting and full of love and overflowing with the unanswerable questions that choke us as parents. And this ..

Don’t write that, I hear. Write me instead. Tell me what is, what I am doing. What is next.

Took the air out of the room. I get this. All of it. Where are the lines?

Thank you.

— added by Jess on Tuesday, December 10, 2013 at 12:16 pm

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