Susan's Blog

Sunday, December 28, 2014

I am Nat’s Ghostwriter

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers  — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be.  I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them.  It feels like it is crossing a line to do that. Don Meyer, Sibling Expert, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary.  It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.




This is lovely and so full of honesty, Susan. Thank you. I struggle with this, as M has turned 18. I feel I speak for her as she is unable to many times. And I struggle with it all. I’m not her. How do I know what she feels/thinks/wants/needs. I guess, based on my Mommy gut. And I hope I am correct at least 50% of the time. That feels like crap to me, but I don’t know how to make it any better. Thank you for writing this, my friend.

— added by Penny on Sunday, December 28, 2014 at 6:52 pm

Perhaps a skilled “Contributing Editor”, instead of “ghostwriter”? Seems a closer fit to me. Terrific post, Susan.

— added by Gene Bensinger on Sunday, December 28, 2014 at 9:21 pm

This was absolutely brilliant and resonated so much with me and our family. I’d love to post part of this on BLOOM. I’ll be back in touch. Thanks!

— added by Louise at BLOOM on Monday, December 29, 2014 at 10:16 am

This is a beautiful, honest and insightful post from a loving mother. You are an amazing mom.

— added by Maria Estrada on Monday, December 29, 2014 at 11:52 am

Sure, Louise!

— added by Susan Senator on Monday, December 29, 2014 at 12:21 pm

Hi, Susan ….my son is 13, nonverbal, severly impacted by autism in ability to gain skills. In July I madethe decision to allow him to go residential within his school. I am a divorced mom, the only involved parent for him and his sisters (20 and 17 years old). I am a nurse by profession. I see the limits and imperfectionsof any system in caring for my son. I had my own limits and was hard on myself. I find it more painful to see the limits in the residence. I have felt marginalized all my life and so now I view his life through that lens. I did not speak up for myself for years and now, learning to do so, I am unclear what and how to speak up about and for my son, what balance to maintain. In am in therapy, I am attempting grad school to obtain a better income. My work has been in the mental health field. I want to better educate myself to the residential piece, the adult piece, self-determination. How do I begin? How do I not burn out and die while loving my own family?

— added by Stephanie on Tuesday, January 13, 2015 at 1:11 pm

Steph, the only thing I could say is, give yourself time. Even though you feel you should be moving swiftly, you can’t do everything, you are not perfect and you don’t need to be. I’m speaking from personal experience, as someone who also had to learn later in life to speak up for myself, for my children, and *how* to do it. I never forgive myself for mistakes, but that is something I’m working on. Maybe you can, too? I think you will get the info you need for your son’s residential piece, but it might take longer than you like. There may be some trial and error. That is normal for an autism parent, unfortunately! It sounds like you are very self aware and a real fighter. That is why you will succeed. You bite off small chunks and still take moments for only yourself. You have to. Did you read my book “The Autism Mom’s Survival Guide?” This may have some other thoughts for you. I think you are on the right track, and you will get there. 13 is still young.

— added by Susan Senator on Wednesday, January 14, 2015 at 7:38 am

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