Susan's Blog

Thursday, January 8, 2009

Is It Write?

I have been writing all afternoon, and so now it’s time to take a break and — write! But blogging is not like writing writing; blogging is just my head melding with my fingers, keyboard, and screen. There hasn’t been a post in a few days (I don’t count the Today Show and the No Show, nor do I count the Tabblos), so a lot has been stewing. This thought-meat is now so soft and tender a for could go right through it.

I’ve been thinking about whether it is right to write about one’s kids. Some readers have been commenting to me about those who are trying to profit from their kids in one way another. I want to address that from my own perspective.

First of all, there’s the rights of the kids. With some kids, you can ask them, or you can get a sense as to whether they mind being exposed to the public. Max says he doesn’t care; Ben does. So I am very, very careful with what I say about them. But I still do say things about them. I believe that as their mother and as a sensitive, intuitive person, they can trust me to do justice by them in my writing.

Many readers probably think I don’t give Nat the same consideration. Oh, but I do. I don’t know what Nat knows, and I try to guess what would bother him, were he to be able to understand my blog. I believe that he does not understand my level of writing. His conversation and reading comprehension demonstrate significant delays. Therefore I don’t think that what I write would upset him; still, I am very very careful.

I am the kind of parent who believes in disclosure. If Nat could understand what it meant that he was autistic, I would tell him he was autistic and we would then have some kind of conversation about it. But so far, all I have managed to convey to him is that Nat does this or that differently from his brothers, or that Nat is doing a good job learning how to talk, how to help with chores, etc. I just have a certainty that he can’t understand any deeper than that. He does not seem to be a wonderer. He seems, rather, to live in the moment, making himself happy with playing around with words and moving his body in certain ways.

I believe, in the end, that it is okay, and in fact, it is good, to write publicly about my perceptions and questions, fears and hopes because I hear from others and I then make sense of life. Sometimes, though, it is just about articulating my thoughts in print. I press “publish,” when I feel secure in what I’ve written. If I find myself thinking, “Why the hell should I tell them that?” then the post becomes just a draft.

Items that I believe would embarrass or upset my children do not get expressed here. But problems and questions do. When you ask a question, you are not violating anything; you are asking. You have not concluded anything.

I also write things to help others, so they can learn from my struggles and my mistakes and my revelations. I make judgment calls about some issues. There is very little written, for example, about how to help your child be appropriate and safe with his/her body. So in my book I did write about our experiences with Nat’s development and the problem of privacy. That was a decision Ned and I carefully considered. I tried to write sensitively and appropriately, but I felt that to write about it would help others. And I was right. Tons of people have come up to me after talks and thanked me for writing about this; dads especially. It is so important to know we are not alone in our challenges, and how to balance our love for our children with the need to make them stand on their own and take care of themselves.

I also write to make the non-autism community understand. I write to make the world a better place for Nat and for people like Nat.

I also write for myself, for selfish reasons. I do indeed get a lot of pleasure over the fact that I wrote and published a book, have another on the way, that I get to express my views and experiences on national TV a few times, that I got to go to the White House and talk to powerful people about my concerns. I got to give my book to the First Lady. That was really fun and satisfying. I felt like I was doing my best as a person to improve life. So in that way, I do get some personal joy out of writing about Nat and my experiences. I wouldn’t write and speak, etc., if it was not fulfilling to me. And yes, I have made a career out of it, and I don’t see anything wrong with it; I see a lot right with it.

I don’t know what people like Jenny McArthy think about, or what motivates her, but I guess I believe that even she, a beautiful woman who has tons of money and fame, is not writing and speaking about her son for self-aggrandizement. I think she is trying, in her own way, to get the word out. I don’t agree with a lot of what she thinks. Her word may not be helpful to many of us, and downright angering and depressing to some, but I think her motives are good. I believe she loves her son.

Maybe I’m all wrong. I’m sure you’ll tell me what you think!


Susan, I think anyone who has an issue with your writing is just jealous that they aren’t as good at it and making a living at it! That would be a dream come true to me! Keep up the good work!

— added by Bonnie on Thursday, January 8, 2009 at 6:27 pm

Thanks, Bonnie. I was just trying to talk honestly about why and how we write about our kids, the full picture, because it would not be completely honest if I only said it was to help others.

BTW, there is no way my earnings qualify for a “living!” By myself I would be below the poverty line.

— added by Susan Senator on Thursday, January 8, 2009 at 6:41 pm

So what, you’re still making money doing what you love! What could be better!?

— added by Bonnie on Thursday, January 8, 2009 at 7:06 pm

I agree with Bonnie.

People knock JMcC, and use the whole “making money off her kid” argument in order to disparage her, which is totally the wrong way to go about it.

I may loathe Jenny’s views, and think that you hung the moon when it comes to proper perspective on autism. However, neither one of you is pimping out your children for sheer profit. Both of you, even Jenny in her own misguided way, are trying to raise awareness and in turn, help your children and the millions of autistic children like them. Yeah, you’re making a profit. So what? There’s nothing unethical about it. People have to make a living. You happen to be making a living with your writing.

You are VERY respectful in how you write about Nat and all of your boys. Always. Anyone who takes issue with your writing about your experiences with Nat can just get bent, in my not so humble opinion. 🙂 Keep on writing, Susan. By the way, when is your new book coming out??

— added by ASDmomNC on Thursday, January 8, 2009 at 7:29 pm

I agree that sharing our struggles as parents helps us and our children. We have been dealing with a behavior with my daughter (she has been eating her hair) that we just got under control. I would share this in a minute with another parent going throught the same thing – we’ve got to help each other and thank god for the internet. I can’t imagine how isolated I would feel without people like you who are willing to share!


— added by Anonymous on Thursday, January 8, 2009 at 7:54 pm

ASD Mom –
I think my book will be out a year from July, maybe sooner, if I get it in sooner. I edited the first few parts today — not bad.

Thanks, Susie.

— added by Susan Senator on Thursday, January 8, 2009 at 8:52 pm

You have been quite fair in sharing your triumphs and challenges not only with Nat, but the rest of your family. I do not think you’ve exploited any of them.

— added by Someone Said on Thursday, January 8, 2009 at 10:39 pm

Susan, your book (and blog) was among the first I read when my son was diagnosed, and words cannot capture what it meant to me at that time. I had a small notepad by my side, writing down quotes like “We were becoming a crack little family, full of strategy and purpose, yet no matter what we did, or how well we prepared for each new event, we still could not prevent or predict the little spasms of sadness that would seize us from time to time.” (This still makes me tear up reading it, even now …)

I remember thinking, wow, this woman gets exactly what we are going through. And as others have said, your writing about your kids, and Nat, is always respectful and in the most excellent of taste.

— added by Betty & Boo's Mommy on Thursday, January 8, 2009 at 11:31 pm

Susan, I completely agree with Betty and Boo’s Mommy. Your voice has been in my head during some really rough times and I am so appreciative of what you do here. In fact, we just has a very difficult IEP meeting and once we got home, I told my husband “You know, he’s still our Daniel” – (so I guess I sometimes have your father’s voice in my head!). It just gave us so much strength to keep focusing on our sweet boy – not hampered by the labels others wanted to put on him.

— added by S on Friday, January 9, 2009 at 11:06 am

Susan – aren’t you supposed to write what you know? Anyway, your posts have been such a gift to me and my family – helping us dispel feelings of shame about our decidedly non-typical family. Sure, it sucks to have to plot out simple chores like going to the market, and having to decline invitations that are simply too much for Jared to take, but we all have to get on with it.

I’ve been inspired by your love and dedication to bellydancing, (not enough to dance myself of course) but that your life was not all autism, all the time. It can be consuming, and not in a good way. I used to hate birthday parties with a white-hot passion, they only highlighted what Jared’s limitations were, but as we’ve all matured, now it’s okay that Jared enjoys a birthday party on his terms. It was a lesson I needed to learn.

I respect that everyone has their own sense of what should be private, but talking about what are sensitive issues is such a shame-buster. Talking about hiding bruises on my arms is hard, but dammit, it helps me cope. I can forgive myself that indulgence, and hope it doesn’t freak too many people out.

Great post Susan, have a great weekend.

— added by Anonymous on Friday, January 9, 2009 at 1:55 pm

I for one don’t feel that you have ever done anything inappropriate as far as writing about your son or your family and the issues that you have faced. And if I did not believe that, I would not state it. My personal take on your book and blog has been that your writing is your way of dealing (and coping) with autism and all that that involves, while trying to be an advocate for your son, your family (even my son) to continue to fight the battles that need to be fought to give Nat the quality life he deserves, that all of our children deserve. It also helps in that the problems and issues you face (or have faced in the past) are the same ones I face now and your experiences can be a guide to moms like myself who are dealing with a child younger than yours but with EXACTLY the same problems and concerns. For myself, one issue that I continue to face all the time are loneliness and feeling ostracized because I have a child with autism. I can pull up the daily blog to read your thoughts for the day and it usually helps. I may not agree with everything other moms with a child with autism have to say, but I appreciate your writing and know how hard it must be sometimes for you to put yourself out there. Let’s just say I am always interested in what another mother with an autistic child has to say.

— added by Sharon L. on Friday, January 9, 2009 at 3:39 pm

Even if you don’t think Nat would understand what autism is, I can’t imagine he’s never heard the word before or heard it used in reference to him.

But I can’t tell from your post whether you’ve told him things about being different but deliberately avoided using the word “autistic”, or whether you have tried telling him about it and haven’t gotten any feedback indicating to you that he understands.

In any case, though, I don’t think there would be anything to lose by telling him that he is autistic and that is why he does some things differently from other people, etc.

While I would never suggest that all autistic people have (or have to have, in order to be valuable as people) certain types and levels of cognitive ability, I do think it’s safe to say that often times it is really impossible to know what an autistic person CAN do and/or understand based on other things about how they act and seem to communicate, etc.

I would probably be considered a “different kind” of autistic person than Nat because of how I can write and the things I write about, etc., but I can still relate very very much to the kinds of things he seems to get happy about, upset over, etc.

Like…I remember when I was younger getting absolutely livid when I saw people baking and they would crack the eggs on the counter rather than on the side of the bowl, because to me that was just *wrong* and made everything feel all slippery and unreliable and weird. I also remember completely melting down when, say, my parents had said that we were going to the store, only we couldn’t because the car would not start that day.

And on the happy side of things — I’ve definitely tended to do a lot of running after shiny things, watching/listening to the same things repeatedly, etc. It makes total sense to me why someone would like things like that and how there is a sort of infinite depth in anything one really enjoys (to the point where you can’t really “get tired of it”, as each time is revisiting the same space of things which are liked).

And…reactions like that never made any sense to me even just in my own head until I was diagnosed on the spectrum and certain things were explained.

Granted I may belong to a subgroup of autistic people who are just introspective by personality, which isn’t all autistic people, and I know my language development is not the same as every other autistic person’s, and I am not suggesting you are doing something wrong (especially since I don’t exactly even know what you *have* told Nat, or tried to tell him).

I guess I am just saying that, hey, even if you don’t think he will understand or care, it is still probably worth saying something about him being autistic within earshot of him. And also that it’s *okay* that he’s autistic. You never know what people are picking up on, what they’re overhearing, etc., or what random thing might suddenly make sense in their head!

— added by AnneC on Friday, January 9, 2009 at 10:37 pm

Anne, I will tell him; you are most likely right that you never know what will get in and help. Thanks!

— added by Susan Senator on Saturday, January 10, 2009 at 7:15 am

Some people just plain have nothing better to do than mind everyone else’s business for them. There are those that feel that our choice to give Max growth hormone shots because he has what is called pitutary dwarfism and does not make enough growth hormone on his own to grow is wrong and we should just leave him be. There are others who learn that Jarrett is autistic and act as if he has the plague. I also blog about my kids and my life on Blogger and Myspace and I, too am careful about what I say. I feel that you have done nothing inappropriate by sharing aspects of your life and experiences with your family in your book(loved it!!) and on your blog. I enjoy reading about others experiences with autism. Sometimes it gives me a different take on something or I learn something new I can try and I share ideas with a friend who has an autistic daughter. I say keep up the good work and do what you feel is most appropriate for you and your family.

— added by cameramom on Saturday, January 10, 2009 at 11:57 am

Hi Susan

I read your book a couple of years back when my little guy was about 9-10 (he’s 12 now). I thought it was very honest, candid and extremely helpful. I felt like I found a double treasure when I then discovered that you had a website and have been reading your blog almost daily ever since. Usually when you read a book, it satisfies you and inspires you and makes you think for awhile, some for quite some time but I can say that now, even 2 years after reading your book, I still find such inspiration in your blog entries. Your book introduced me to your family but your daily writings about them has continued to inspire and interest me. You have shared your life with all of us so much that I almost think of you as a personal friend. I just love looking forward to the special personalized birthday cakes you make for your boys and watching as Nat, Max and Ben grow from the young boys described in your book to the young men they have become – the different hairstyles Max has had over the years, the accomplishments that Nat has made, and the strong independent boy that Ben is. You can tell that you love your family beyond words!!!! Thank you so much for sharing all of this with us!!!!!!

Maple, Canada

— added by Anonymous on Saturday, January 10, 2009 at 9:29 pm

I read your book 3 years ago and draw strength from it daily!! I love hearing about Nat and how he is doing and how your family has coped in general.

My sister and I had to take Ben to a doctor’s appt. today and we were talking about you!! We were saying that we need to make social stories like you did for Nat. I was also telling my sister how much you have done for Nat without nearly the amount of resources I have had and how inspirational you are!!

Keep it up!!

Molly from MN.

p.s. Ben has been REALLY hard the past few months but “my mini man does what he can” gets us through:-).

— added by Anonymous on Monday, January 12, 2009 at 9:27 pm

Susan; I don't think you have been exploiting Nat or your other boys in the slightest. Your book was the first one I read after Nick was diagnosed-and your words gave me strength. I have often repeated the line "mini man doing what he can" in my head. You are out there telling it like it is….no sugarcoating it; not promoting some "miracle cure",etc. To me, you are in their face saying "this is REAL life, it is not always fun, but not always doom & gloom either". I wished they would have aired your interview. The only person the public associates now with autism is Jenny M.

— added by Amy on Tuesday, January 13, 2009 at 11:58 pm

Well said Amy!!

Molly from MN

— added by Anonymous on Wednesday, January 14, 2009 at 3:37 pm