Susan's Blog

Friday, September 5, 2014

The Heartbreaking Quiet

Nat comes home every weekend. He is quiet. Sometimes he’s “activated” as his psychopharmacologist says — I hate that. It is such an inhumane way to describe someone. He’s just active. That’s it. Activated — what’s that? It’s referring to how maybe his meds make him? No, his meds are not like that. Besides, he is practically weaned off them.

Sometimes Nat is not active at all. Sometimes he just moves from one couch to another. I can’t get away from feeling like this is something that should not be. I remember years ago, a behavioral consultant who believed in that ABA bible, “Let Me Hear Your Voice,” told us we needed to scaffold with Nat, and to chain. Lots of construction, building — and also keeping down. The eternal struggle of ABA. We’re supposed to wrestle the autism to the ground, like Secret Service agents.

So I didn’t do that. Not really. People think I’m such a good mother but I did not do that. I got tired. Depressed. Lost hope. I didn’t consistently practice the ABA. He’s almost 25 for God’s sake and I’m still beating myself up for it. I did not believe it was the way.

Was I wrong? He is so quiet. If I had believed and converted, would I be hearing his voice more?

My heart just breaks for him. How is it okay, living such a quiet life?

I did the best I could, but my best was at times anemic, tired, mediocre. And he suffers for that. He is only as engaged as I make him be. That’s what a teacher told me when he was 5. It was all up to me in the end.

It’s always up to the parents. Even Post-Refrigerator. I see that now even with Nat as an adult. It’s up to us.  From the start. The parents give birth. The parents try. The parents have to figure out that something’s wrong. The parents have to convince the doctor. The parents have to push the school system. The parents have to deal with their sadness, their incompetence. Everyone’s incompetence. And ignorance.

Then the evil of the adulthood system starts and there’s even less. Parents come to the rescue again. Parents will tell you what to do. Parents will listen. Parents write the blogs. Parents run the workshops. And write the books. I’m still writing mine, but just so you know. I’m no expert, either. I am just a mom, and not always a good one.

It’s just we humans and our beautiful, vulnerable children.





oh, sue .. i get it. so much. more than i can explain right now.

but please know this – you are exactly the mom that your son needs you to be. not anyone else – you. you, who listened to your mama gut to protect him. and that is what you did.

you are perfectly imperfect at this, as are we all. the ones who constantly question? well, those, my dear, are the very best.


— added by Jess on Friday, September 5, 2014 at 8:24 pm

Thanks, Jess. I know you know about these kinds of times.

— added by Susan Senator on Friday, September 5, 2014 at 8:25 pm

Susan, I think this is one of the most moving blogs you’ve ever written. What a heavy, heavy weight we feel as a parent.

— added by Sue Lowery on Saturday, September 6, 2014 at 9:36 am

Thank you, Sue.

— added by Susan Senator on Saturday, September 6, 2014 at 9:43 am

I’ve been quiet lately. But I want to say that you said something so profoundly true in this post.


— added by Dixie Redmond on Saturday, September 6, 2014 at 9:53 am

I just felt like I was writing my sad out.

— added by Susan Senator on Saturday, September 6, 2014 at 9:55 am

Susan, I think you are a wonderful mom- the mother your son needs. Why do I think so? You have kept the focus on the child: what is is ready for, how much can he take, am I changing him or helping him, is he happy… I have had ABA services for my 22 year old for just about his whole life, on and off as you have described, and now we have decided to put away the behavior plan for a while again. I have never seen my son so happy as he is now. He doesn’t necessarily perform to his full potential, and he is not as compliant with his adult program as he would be with his BSP. But he is cooperating much of the time and downright invested more often than I would ever have expected. The most important thing is that he does his happy dance again. So your words resonate. We moms are filled with guilt and fear and second guessing but we learn to know our kids and, hopefully, do what’s right for them. Thank you for this post. I needed to see it.

— added by Michelle Alkon on Saturday, September 6, 2014 at 10:07 am

Susan, for us as parents, it’s not okay for our children (adult or not) to life such a quiet life — but perhaps it’s okay for them. As we chatter and interact, must they step into our world so that we won’t feel as if we have failed them? Your heartache here describes more perfectly than I could ever say what legions of us parents feel. From the outside, I can look at your situation and realize that by simply letting Nat be NAT in the safety of his beloved family, you are giving him what we all desire. Remember? “Home is the place where, when you have to go there/ They have to take you in.” You have failed no one. You are not a fraud. You have written words here that make all the rest of us feel less alone. And Nat? You have allowed him to be who he is, Susan. How I wish I could make it hurt less – for all of us.

— added by Marikay on Saturday, September 6, 2014 at 10:43 am

thank you, dear Marikay.

— added by Susan Senator on Saturday, September 6, 2014 at 12:16 pm

I refused to “train” mine 24/7. ABA didn’t agree. I finally got rid of them. We have quiet days, we have loud days, we do amazing graphics on our DSi and he teaches himself languages via You Tube. OK, I don’t know how much of the Russian part of the Sochi Olympics he understands but… yanno… I care… why???

See… there is a saying I always try to remember when the guilt hits…

Pg 21, Sword of ice and other tales of Valdemar, Mercedes Lackey

“and that ‘children should live and laugh and play'”

— added by farmwifetwo on Saturday, September 6, 2014 at 3:14 pm

I think you have written what so many parent’s feel. I am interested in the way the ABA community and pundits have had such an influence on the imaginations or parent’s that we have to change our children – ABA as a social construction – to fashion Behaviour that is temporally appropriate. More research could be done to focus not on what autism does to parent’s but how such therapies might have incited insidious doubt that effects our interactions ad lives with our children.

— added by Estée Klar on Sunday, September 7, 2014 at 9:52 am

I totally agree,estee.

— added by Susan Senator on Sunday, September 7, 2014 at 11:08 am

[…] A week later, I would read Susan Senator’s blog post, The Heartbreaking Quiet. […]

— added by what she needs | a diary of a mom on Tuesday, September 9, 2014 at 6:26 am

So grateful for your honesty-We were actually in the era of “Lovaas works…but your window of opportunity has shut”. Sending love and hope.

— added by Laura Shumaker on Tuesday, September 9, 2014 at 5:54 pm

Aaaah yes the art iof ABA….Being a grandparent and thinking how wonderful it would be to have this darling boy visit us and sleepover! Autism and ABA therapy got in the way of those dreams! It was exhausting to say the least and many times( most) we resorted to kisses and hugs….so much easier…

— added by Gaye Galluccio on Tuesday, September 9, 2014 at 6:37 pm

ABA verbal behavior is a big improvement over Lovass, using naturalized teaching instead of endless no-no-prompt repetitive trials. The science of applied behavioral analysis has value in trying to figure out the purpose of a behavior and how to shape it into something better. It’s helpful to know about behaviors better to ignore rather than strengthen them through negative reinforcement. That being said, I absolutely hate the guilting parents do to other parents over therapies tried or level of dedication of effort. What seems to get lost often is that people with autism do in fact have a personality. Some behaviors may stem as much from character traits as from autism. But somehow in autism, they are viewed differently.

— added by Julie on Tuesday, September 9, 2014 at 8:23 pm

Susan, just getting to this one, have been so nuts with back-to-school. Everything you wrote in this post resonated with me. When our youngest regressed he seemed so much more profoundly affected than our eldest, yet he is the one talking a mile a minute and mainstreamed and my oldest will require lifetime care. I sometimes wonder if I was just so much better at therapy with my second and that is why he ended up on the mild end of the spectrum, then I feel guilt about my oldest. I truly think however that so much of their outcomes predominantly rests upon their innate abilities, that we only have a certain amount of room with therapies to influence anything. But one thing I do know for sure, is that I’ve always done the best I could, and I am confident from reading your blog and books that you’ve done the best you could as well. That knowledge comforts me, and I hope it does for you as well. Thanks for sharing this!

— added by kim mccafferty on Wednesday, September 10, 2014 at 1:38 pm

<3 Kim

— added by Susan Senator on Thursday, September 11, 2014 at 7:41 am

Exactly, Julie. These things are so complex, there is no easy answer. And your last point is so true. It is so dehumanizing when people do not see that our guys do indeed have character traits…

— added by Susan Senator on Thursday, September 11, 2014 at 7:44 am

I know it, gosh, as I am in the very same, the exact same situation. I wish, oh how I wish my guy and I could have a nice, long conversation. That is my fantasy come true. We sit on the couch in our little modest home, Matthew and I, and we talk and talk and talk. He catches me up on the last 17 years of his life, what he thinks, what he wants for the future. His likes and dislikes. And I ask him everything I have wanted to ask him for all these many years. And he answers! And then we talk about his answers. Ahh, if only, if only.

— added by Sharon Jones on Monday, September 15, 2014 at 2:38 pm

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