Susan's Blog

Monday, June 18, 2007


This is the third time I am using this blurry photo in my blog.

When I first saw this picture on Ned’s computer screen, I could not take my eyes off it. There was something about it. Soon I found tears streaming down my face and I knew what it was.

This, to me, is a flash of possibility, a little trick of What If. There is something here about his smile that is more open and wiser than usual, as if he is laughing at something tangible, rather than something in his own head. There is something so typical teenage-boy about his stance, something so expressive and confident about his eyes, maybe because they are blurry, that tricks me into suddenly knowing what Nat would have been like if.

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

And then I blink, and he’s himself again. And it’s okay. The soreness recedes mercifully fast, and I’m back, and it’s just a cute photograph. It’s him and it isn’t. You can’t construct people from your wishes, I suppose. That’s why we have novels.


Beautiful and achingly true. I’ve had plenty of those moments. Those what-if-magical-thinking-moments.
I like the way you resolved the post.

And he is just beautiful. What a smile.

— added by Drama Mama on Monday, June 18, 2007 at 8:37 pm

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

He already is truly older than Max. Do you realize how offensive that is to think he’s not just because he thinks differently?

— added by ballastexistenz on Monday, June 18, 2007 at 8:39 pm

I know what you mean. I have felt that way regarding Charlie. It is so hard to shake it off for me afterward.

I love who my son is. I don’t want to remake him. But what I would give to speak to him, to be able to understand him, even for just a few minutes. I would give anything.

Ok, being 100% honest, maybe it is offensive, but there ARE times when I would remake him. Even if it just to make it easier on me. Let me take the heat for that remark. But it’s true from this parent’s heart.

— added by Mom on Monday, June 18, 2007 at 8:52 pm

can any parent can see child as a person, a whole separate person, not just their child? can any parent see who the offspring really is, without paralelling with who they wanted them to be? this is natural, but this is not ok. what can we think when we read this about ourselves?! only, i am glad my parents have no blog.

— added by personne on Monday, June 18, 2007 at 9:07 pm

What I see in this photo is something more connected in his eyes and the way he’s standing and looking up at you and sharing this emotion than I usually am able to see and/or hold onto with Nat.

— added by Sarai on Monday, June 18, 2007 at 10:20 pm

I am now remembering a picture taken at Autreat 1999. Four of us are standing next to each other. Three are looking straight at the camera, one is looking away. The one who is looking away is the only non-autistic person in the picture. Now I am having this bizarre image of the non-autistic woman’s mother sitting there and writing a long emotional post about wishing her daughter really were autistic, or something.

— added by ballastexistenz on Tuesday, June 19, 2007 at 8:38 am

Thank you (as always) for sharing your thoughts. I can see exactly what you mean about the photo.

I had the opposite reaction to a photo of Henry lately: the one his teachers took and made into a Mother’s Day card. He’s kind of half-smiling, head tilted, and looking off into the distance in a distracted way. He looks very “not-with-us” and I don’t like the photo.

— added by gretchen on Tuesday, June 19, 2007 at 9:50 am

Your honesty is admirable. And, I agree with you. I thought the same thing when I saw that photo of Nat – looking so happy and confident. I don’t remember the last time my son looked straight into the camera and smiled. That is a moment I’d hold onto for a very long time.

— added by Anonymous on Tuesday, June 19, 2007 at 10:09 am

I cant imagine Alex without imagining him autistic, because that child wouldnt be Alex. It would be a stranger in Alex’s body, I wouldnt experience that as magical, just very disturbing.

Nat always seems like his own person anyway, from the way you portray him on here. I dont know that neurotypicality would make this any more so. Maybe he’d have more or different skills but thats not the same thing, autism to me doesnt seem connected to a loss or lack of individuality. Beth

— added by Beth on Tuesday, June 19, 2007 at 12:40 pm

Gee whiz. What if your father always wanted a boy, and saw a photo of you from a certain angle where he could imagine that you were a man now? And then he wistfully wishes you were a man?

Sure, it’s OK, but it could still be very hurtful for soemone to wish you were really someone else, especially in public like this.

I can’t remember a time when I saw a flash of “normal” in my ASD kid, and I can’t imagine blogging it if I did. It might hurt my kid’s feelings really badly, and leave that person feeling like a failure.

You might read, “don’t mourn for us” by Jim sinclair if you haven’t already.

— added by Ms. Clark on Tuesday, June 19, 2007 at 2:32 pm

I am sure my father has wished that I were different in some ways! I don’t hold that against him. I wish a lot of things, and I blog about them. I think that keeping a dialog going is helpful all around, and I appreciate all the thoughts I have heard today. I will also reread Jim Sinclair. But I still maintain that it is okay what I thought/wished for a split second. I still love Nat EXACTLY as he is, make no mistake.

By the way, I don’t see him reading or hearing about this. It is not within his interests, perhaps not even within his ability, to read my blog or my book.

— added by Susan Senator on Tuesday, June 19, 2007 at 3:19 pm

Those of you offended on Nat’s behalf, don’t overlook that Susan said, “I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb,” and “he’s himself again. And it’s okay.”

Yes, she also said other things, but parenting is rarely a straightforward experience. It often involves conflicting emotions, some of them far from positive. We could pretend it was not so, but I think Susan is doing an admirable job sharing the full complexity of her parenting experience.

— added by Ned Batchelder on Tuesday, June 19, 2007 at 3:24 pm

I agree with Ned wholeheartedly.
I appreciate your honesty Susan and your parenting.

— added by Dori on Tuesday, June 19, 2007 at 3:43 pm

It is incredibly depressing for people with this or that or whatever kind of disability (and I’m not autistic, but I know that at least some of the people commenting here are) to know that no matter what we do as ourselves, as the real child, right here, right now, we’ll never live up to many people’s image of the imaginary child who’s normal.

Now I get worry about if when my parents say they’re proud of me, they’re really wishing me away and fantasizing about a non-disabled alternate child whose sheer normality makes her more wanted than anything I can ever hope to achieve in my life. Thank you.

— added by Anonymous on Tuesday, June 19, 2007 at 3:49 pm

You know, Susan has taken a lot of heat here for saying that sometimes she sees things as they could have been. But is there anybody out there who argues that being autistic isn’t pretty hard? That it doesn’t expose one to some serious risks and challenges, and that, therefore, it doesn’t fall within that group of things that parents, in their desire for a happy and easy life for their children, might regret having on their child’s plate at times?

Look: difference is hard. I’m different, in a way lots of people approve of (160 IQ), and it is hard. I had to beat the snot out of two boys in grade school to establish that I was not be be bullied. I asked complicated questions about existentialism when I was 6. I’m sure sometimes my parents would have liked to worry less about my situation, about my education – I would have liked to be more like the other kids. How the hell is that a symbol of all that is evil in the world?

Lots of us equate age with ability to take care of yourself. Particularly parents. I didn’t expect to be still wiping bums when my youngest was 6. He’s not there yet, I still hope that he may be. But for somebody who mostly “gets it,” having been raised around plenty of ASD folk, I still have moments where I am frustrated with how hard it is to make it through the world with/for an autistic child. I don’t value normal the same way others do, and I still have a hard time.

Look, plenty of people are going to have fleeting moments where they wish it weren’t so. That’s no crime.

— added by Anonymous on Tuesday, June 19, 2007 at 3:54 pm

Please, don’t think that! That is not what I am doing here. I do not wish for Nat to be otherwise. I wonder what it would be like, to engage with him in NT fashion, and being NT, I can’t help but feel like that would be easier! But I LOVE HIM AS HE IS.. He is incredibly special just as he is. Your parents feel that way, I’m sure. We don’t want to trade in our kids for the alternate model; we just fantasize, just like we do about ourselves or our spouses. It’s human. It is not a rejection of the person that is; it is an expression of the fantasizer’s thoughts, that’s all!!!!

— added by Susan Senator on Tuesday, June 19, 2007 at 3:54 pm

I have those moments, sometimes crying moments. I have one photograph were K.C. looks so connected, so with the program.
For me I cry mostly because I feel he is being left behind, missing so much of what life has to offer. I often think, “it’s just so unfair.” It’s tough to pull myself back together after the “what if” moments strike.
Nat sure is handsome:)
I agree with Ned totally!

— added by KC's Blog on Tuesday, June 19, 2007 at 5:03 pm

No-one is suggesting Nat isnt deeply loved. We may be discussing attitudes and conceptions and ways of expression and that may make posters feel uncomfortable but I dont believe love was ever questioned :o)

— added by Beth on Tuesday, June 19, 2007 at 5:35 pm

All of this remains true
There is something here about his smile that is more open and wiser than usual, as if he is laughing at something tangible, rather than something in his own head. There is something so typical teenage-boy about his stance, something so expressive and confident about his eyes

What if … he’s growing up? 😉

— added by Suzanne on Tuesday, June 19, 2007 at 5:44 pm

And you’ve also determined that that it won’t be in his “interest” or “ability” to read a book or blog?

— added by Anonymous on Tuesday, June 19, 2007 at 6:43 pm

And who are you to judge me? Yes, for the near future it seems that Nat reads at a particular level (dare I say 2nd grade?) and does not appear to be interested in any books other than Disney ones. I guess I now belong in the Terrible Mother category!

— added by Susan Senator on Tuesday, June 19, 2007 at 7:09 pm

This is the essence of political correctness. Do not say what is in your heart or you will be bludgeoned for it. Better to lie or hide the truth than to tell it.

Say what everyone wants to hear, even if it does not even touch what’s in your heart.

Call me a bad mother, call me a good mother. I don’t care. I know I am just a mother. I have to call them as I see them.

If I had a child who was deaf, should I be stoned for wishing that he could hear? If I had a child who was born with a hole in his heart, should I be criticized for wishing he had not had that problem? My child has very severe autism.

I don’t wish him dead or gone, I just wistfully wish that the problems that he has communicating were not as severe. Why is that bad?

Sue, I don’t think you should feel bad about your comments or take a beating over them.

— added by Mom on Tuesday, June 19, 2007 at 7:41 pm

Sorry, but I am taking down or deleting any posts that attack others. The posts that remain are simply in disagreement with things I wrote. The post I took down was trying to defend me, which I appreciate, but attacking someone else in the process. I also took down the post which commented on this. Thanks all for weighing in!

— added by Susan Senator on Tuesday, June 19, 2007 at 9:24 pm

Thank you for your honesty Susan. I am a first-time poster to your blog though a long-time reader :0). I am also the mother of a 10 year old girl with autism. I appreciate all that you say, I see it too in the photo of Nat. I see it in some of my daughter’s pictures too at times, the look of ‘what-if’ then as fast as a shutter on a camera, it is gone. Don’t we all have moments like this as parents? Autism is hard on my daughter – she tells me so. I tell her I love her, autism and all. I just wanted to tell you that you are wonderful, thoughtful mother – Nat, Max and Ben are lucky to have you. Thank you for expressing your thoughts that many of us feel at times, as mothers, as humans.

— added by Penny on Tuesday, June 19, 2007 at 9:26 pm

I’m sorry to see you getting criticized for expressing an honest emotion. Your love for Nat is very clear throughout your blog.

I’m always surprised when I realize that I don’t think much about “what if” my twins were NT. I guess because they always seemed different. But also, to be honest, because It is too painful to think about.

— added by Mom to JBG on Tuesday, June 19, 2007 at 11:04 pm

I agree with JanB. Susan is being honest and saying what’s in her heart. Parenting a child with autism is a totally different experience than being person with autism. Just as non-autistic people can’t fully understand what it is to be autistic, people without children and without children with autism cannot understand what it is to be that parent.

Susan is sharing something painfully honest, and getting flogged for it unjustly. Not every emotion you have while parenting a child with autism is rosy, sparkly, pretty, and nice. She can still love Nat for exactly who he is, right now, and have these feelings just the same. She’s human. She has a right to her feelings, regardless of what others think of them.

Such judgemental attitudes…I certainly hope no one who is flame-roasting Susan has never had a negative thought about anyone else they loved. Heaven forbid….

— added by ASDmomNC on Tuesday, June 19, 2007 at 11:56 pm

Disagreeing with Susan is NOT the same as ‘flame roasting’ her or saying she doesnt love Nat or is a dreadful parent or similar.

My brother said several years ago that Alex would always be ‘a child’. I dont think he ever considered it offensive, but it was. Telling him so was not a personal attack on him, although it was challenging his own perception.

Nobody is attacking Susan here, and I respect that Susan is making sure no-one else is attacked either- thanks Susan.

— added by Beth on Wednesday, June 20, 2007 at 6:27 am

The point is not to call Susan horrible. I don’t know Susan well enough to judge, but she doesn’t strike me as a particularly bad person. The point is to make people understand the impact of taking these thoughts, expressing them, publicly displaying them, and having a group of parents gather together to validate them and go, “Yes, raising a child with a disability is like this! We all feel it!”

My parents were exceptional, so I didn’t get the idea that parents of children with disabilities were wishing for normal kids instead (and if they’re wishing for someone who lacks a major defining characteristic you’ve had your whole life, they’re wishing for someone else instead), until I was eight and I saw an article taped to the refrigerator by my friend’s parents about the special burden of raising a disabled child and the special strength it takes. I think it was assumed I was too young to understand.

Going up in public forums like books, articles and blogs, sharing how you sometimes wish for an able-bodied replacement for your kid, and having a group of people gather around to agree and claim that all parents of disabled children feel the same way does have an impact different from a thought or a feeling. If you’re saying this in public, and you don’t think you should be criticized for it, you’re also saying that people with disabilities deserve to hear it and wonder if their parents regret having them and not normal children. If that’s not the intent, thoughts and messages like this should either be kept private, or given careful consideration on what might hear this and what they might take away.

Everyone has a right to have thoughts and feelings, even bad ones (I don’t think thoughts and feelings are morally neutral). And everyone has a legal right to say and write what they want. But everyone has a moral responsibility to consider the impact of their words. Please don’t take the criticism as an attack, but as an effort to explain how these messages are seen by others and a request to consider this.

— added by Anonymous on Wednesday, June 20, 2007 at 6:42 am

what a beautiful photo of nat! thank you for your honesty. your love, respect and admiration of and for nat comes through loud and clear in everything you write, including this.

parenting is complex. people are complex. it’s not all neat and cleaned up inside any of us and no one, therefore, has the right to judge another for fleeting thoughts and images. that saying of walking a mile in the other person’s shoes? as soon as we’ve done it, then by all means, let’s hear opposing views. until then, the energy is better spent making room for it all.

— added by kyra on Wednesday, June 20, 2007 at 7:31 am

As a parent of an autistic child, I know exactly what Susan is saying. I’ve though it, and I’m sure many parents think this about their autistic child but are afraid to admit it. So shoot me. I’m human, I’m not God. I just “wish” Kevin to be able to connect with others. I want him to understand feelings. And I don’t regret saying this. And only a parent of an autistic child will fully understand and appreciate what she means.

— added by MarkZ on Wednesday, June 20, 2007 at 1:31 pm

It is as difficult to autistic people to understand what it is to be a parent of a child on the spectrum, as it is for neurotypical people to understand what it feels like to be autistic. The anger of autistic people all over the internet may be somewhat justified,as they are often discriminated against and misunderstood, but it serves absolutely no purpose. Communication – bridging the gap, learning each other’s language- is the only way to truly begin to understand each other. Judging parents for having a hard time with the challenges of autism is unfair at the least. It is the same as judging an autistic child for having sensory issues.

— added by Anonymous on Friday, June 22, 2007 at 1:05 am

I agree with #31. What I get from Susan’s blog is that she is trying to understand her son, not that she always does it perfectly–no one is perfect. But so many parents of autistic children seem unwilling to understand them at all, being more interested in an elusive “cure” or in the child they wished they had.

— added by Laura on Friday, June 22, 2007 at 12:38 pm

the real issues are made a lot clearer in the comments over at this link:

it’s not not about nice vs. bad.

it’s about implications/consequences of feelings and of making public the feelings of those that have power over the present and future of ppl they write about.

— added by Natalia on Saturday, June 23, 2007 at 12:47 am

anonymous said: “The anger of autistic people all over the internet may be somewhat justified,as they are often discriminated against and misunderstood, but it serves absolutely no purpose.”

but the anger that autistics express all over the internet IS often communication. if you step on your cat and it shrieks, that lets you know you have stepped on it. that is communication. ok there are some jerks out there that are just bitter at the world and say horrible things about all NTs and stuff, but this is not an example of that. this is an example of [getting mad and bringing up a real issue] being a form of communication.

— added by Natalia on Saturday, June 23, 2007 at 10:21 pm

Wow. What an incredibly complicated discussion. For me, I HAVE to turn to the community of autisic and disabled adults to weave through the complicated emotions. They may be honest and fleeting, but then we have to understand their implications for our children.

Every time I read and correct myself in my perceptions, I recognize how buried and burrowed my ideas and bias’ are. Sometimes I feel so unravelled by beginning to recognize that I have had prejudices I wasn’t even aware of until I confronted them. It’s a VERY uncomfortable feeling!! But it’s necessary. For Adam. Yes, he’s a cute little guy now and not a teenager. I consider the benefits of reading the writings and listening to autistic people a preparation for the future as well — so that we live it more freely — without the shackles of expectation. There will be tough times, I’m sure — as there are with any teenager. God knows, I gave my mother a horrible time.

Also, my dad DID want a boy. He trained me how to fight, how to punch the other boys in my neighbourhood. He pressured me NEVER to cry. What happened? I turned into a weeping girl. Not in spite of him but because it was who I was and nothing could change that.

I can’t change anything about Adam. I even question what it is I feel when he does achieve — is it because it is a simalcrum? God, I hope not. I hope it’s authentic, an acceptance of who he is and an honest belief that he can achieve as an autistic person — no matter what the pace.

So all I want to say is that as parents of autistic or disabled children, we have so much more work and inner-questioning to do than most parents. And the best way to understand is not to become defensive, but accept what others might be telling us and try as hard as we can, to learn. I say, keep listening and meeting more autistic people than getting lost in feelings. Feelings are fleeting and can change with knowledge. Knowledge creates new outlooks.

I hope I’ve made some sense.

— added by Estee Klar-Wolfond on Sunday, June 24, 2007 at 8:07 am

Beautiful post, feelings, and wishes. Well done.

I see no difference between publishing a book, like one of my ancestors did, and blogging.

If Nat wants to protest this at a later time, it will be His choice, not yours.

Don’t let jealousy guide you or your words, as sometimes I detect jealousy of the normies in the protestations.


An asperger who himself has the what if fantasies.

— added by Anonymous on Thursday, June 28, 2007 at 3:37 pm

I understand what you’re saying, that you are honestly communicating how you feel.
On the other hand, if my mother said something like that about me (I’m autistic) I’d be hurt.
Even if Nat never reads this, others read it and wonder if their parents feel that way.
I have a younger brother, and in some ways he acts more mature than me. He might even end up looking after me once our parents are gone, since I can’t live independently. But I *am* his older sister, truly, and my disability doesn’t negate that and make me in some way *not older*.

— added by Ettina on Wednesday, March 12, 2008 at 3:31 pm

%d bloggers like this: