Susan's Blog

Sunday, March 22, 2009

Live For Two

Out of the corner of my eye, through the wobbly smudgy glass of the old dining room window, I see the small black Honda Civic speed away with Ned, Nat, and Max inside. A pang of regret, of course, and as usual I wonder fleetingly why I feel that. I walk into the little kitchen and the flash of silver aluminum foil catches my eye, and even more, what lies under it: brownies. Those brownies made me want to cry. Max and Hannah made them yesterday, while Nat looked on, head bent awkwardly a little to close to them, hoping.

Nat left for his Home after lunch today, and because he would be missing Ben’s birthday party, I impulsively threw some cookies into his hands as he was leaving, my effort to include him. Then I saw the brownies, after he was gone, and thought, “What if he wanted those?” Of course even if he did, he did not ask for them.

And it seems like no one else around here even worries about that, except me. I think I’m the only one of the three remaining family members who thinks this way. That makes me angry.

Nat sees so many things, and probably wants so many things, but he rarely tells anyone. I realized that, as he drove away, that I was tired and down as I so often am after he goes, and that a big reason was that I do thinking for both of us. I see brownies, I want brownies, and then I wonder if Nat does. If I don’t think to ask him, he doesn’t get them.

I get exhausted when I am around him because I am always on some level wondering what he wants, what he is thinking. Perhaps that is the sadness associated around autism. I am sorry to offend autistics when I say that, but it is truly there, and we all deal with it. 100 or so interviews can’t be wrong. Even though there is profound happiness and love with our children, there is also sadness. I call it my communication blindness. Mine. Ours. So much that he can’t tell me. For instance, I don’t know if he has bad dreams and just kind of sucks it up, whereas I get to scream and have Ned hold me. Maybe that’s irrelevant now that Nat’s a man. Or is it? Ben and Max used to climb into my bed, crowding me with their delicious, small, warm humid bodies. My clingable self nourished them until they felt safe again to go back to their formerly evil beds. It just breaks my heart that Nat could have had the same kind of need and never, ever got the need met. For lack of words. Stupid words.

With Nat I have to guess, imagine, experiment, live inside his brain — kind of. Sometimes I forget to, and he goes without.

So just as when he was growing inside me, a tiny little Nat-fetus, I am still in some ways living for two. Then he goes off, and who is living for him then?


Susan, you wrote “I get exhausted when I am around him because I am always on some level wondering what he wants, what he is thinking.”

G. often exhausts me while my other two daughters actually give me energy. It is because with her I am in the mode of constantly thinking of what she may be feeling, needing or wanting to say and also I am forever scanning our environment to see if there is anything there that is going to upset her. It is sad because I almost cannot enjoy her company of I am always on edge.

How can a parent not be upset by this?

— added by Anonymous on Sunday, March 22, 2009 at 8:07 pm

I just starting reading your blog; looking forward to learning more about Nat. I’m always curious about young adults with autism. My Mr. Busypants is 6. His autism is mild and he has a bright future, but still, I’m always wondering what is future will look like.

Stop by if you have a chance:


— added by Jeannie on Sunday, March 22, 2009 at 8:31 pm

Ah, Jeannie –
You must read the rest of the blog, or better yet, read my book. There is no way I would ever say that my Nat’s future is not bright. Nat’s future is as bright as the sun. That doesn’t mean that I don’t get sad sometimes, but Nat is (knock wood) one of the most successful people I know. Truly.

— added by Susan Senator on Sunday, March 22, 2009 at 9:16 pm

“Perhaps that is the sadness associated around autism. I am sorry to offend autistics when I say that, but it is truly there, and we all deal with it.”

I don’t think you should be sad. Personal opinions, especially like the ones above are legitimate and you have an unmet need. No one can tell you that what you feel is wrong.

I too sometimes am sad with the lack of communication with my son. I’m also reminded that I rarely talk to my own mother and haven’t had a real conversation with her in years. I then feel bad because I do the same thing to my mother as my son does to me. Often times, I can only communicate under duress and its something I’m working on but this is my pattern. I’m not sure why I only communicate when I’m under duress.

Its also natural to have these thoughts on Sunday evening when Nat goes back to his home. You’ll have more of these than you want but you will also have some very happy moments. Try to always give something to Nat on Sunday’s to take back with him to home. He’ll have it as a reminder and you’ll feel good that you have given him something to keep him “warm”.

— added by Kent on Sunday, March 22, 2009 at 9:59 pm

Yes, I’ve been considering buying your book. I’ll check Amazon. Are you touring yet? I would love to see you in the Chicago-area. I’m in the Batavia/Geneva/St. Charles area. If there’s anything I can do to help you get connected in this area, let me know.

It is amazing what our kids can do. I hope you didn’t think I was implying that Ned’s future isn’t bright as well. These kids are capable of so much more then we are, whether the general public thinks so or not. For me, the fears and challenges that I look ahead to involves surviving grade school, middle school and high school. We’re off to a great start in Kindergarten, but there’s a long road ahead. I’m looking forward to seeing how your family survived those inevitable challenges that come with school-aged life.

I haven’t yet read Ned’s blog today (Miss Chattyshoes is in her crib calling), but I’ll make it a priority this afternoon.

— added by Jeannie on Monday, March 23, 2009 at 8:32 am

Thanks, Jeannie — my first book, Making Peace With Autism, is available in most places, paperback at this point. My next book will be out April 2010.

My husband Ned will be in Chicago next week! But alas, I won’t be. In the future, perhaps!

— added by Susan Senator on Monday, March 23, 2009 at 9:53 am

I’m going to start keeping kleenex next to my computer when I read your blog (and Ned’s made me teary as well!). Your post came at a great point for me today as I was trying to comfort my sweet boy. He was crying so hard in his room and I had absolutely no idea. Was he scared? Did his feelings get hurt? Did his body get hurt?

This feeling of helplessness is probably one of the toughest parts, for me, about my sons’ autism ( I have twins that are non-verbal). Because, like you, if I knew he had a need, every cell in my body would try to meet it – I love them, I’m their mom. I just hope that he feels that from me and his dad.

As always, thank you for sharing! You are an encouragement to me and so many others.

— added by S on Monday, March 23, 2009 at 11:58 am

Susan, this post leaves a little ache in my heart. You wrote this so beautifully, and your words echo in my soul.

It’s 94F in my city today and crying is the last thing I want to do in this heat, but my tears won’t stop. I feel the sadness too, more and more these days as my son grows up without words, and without the ability to express his feelings.

God bless you always! Your love for Nat is a source of inspiration for us all.

— added by Kittymama on Tuesday, March 24, 2009 at 3:07 am

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