Susan's Blog

Tuesday, January 2, 2007

Crazy Little Thing Called Love

“You want to change something, you start by changing just one little thing.”

“No fair feeling bad about feeling bad.”

— Ned

The thing nobody tells you when you plan on having kids is how much it hurts. I am not talking about labor and delivery, though God knows that is pretty painful stuff. I am talking about what you feel for them afterwards. I remember the earliest feelings of looking at Nat felt like a pressure in my nose and throat, like wanting to cry. But it wasn’t sadness — not exactly. It was this feeling more like, “Oh, God, I almost don’t want to love you because if anything ever happened to you I could not bear the pain.” I remember feeling like I almost did not want to become too attached to little Nat because I was afraid I would lose him.

This, I feel compelled to explain, is not the same as rejecting one’s child. It is more like the opposite. I was paralyzed by my love for him that I did not know what to do about it and everything came out like tears.

My fears soon translated into crazy behavior. I became a Neat Freak. A Germaphobe. An Obsessive-Compulsive. A Nervous Wreck. I worried that he would become sick at the slightest little thing. I washed everything. I washed my hands so much that the skin wore away in places and didn’t really recover until after Max was born. This was just as well because I was, as they say, totally uncomfortable in my skin, so who needed it anyway?

It is so strange (still) to realize that there was something brewing inside little Nat, a whopper of a thing, and what that means. Was I running away from my earliest perceptions? Or was I just dealing with some of my own twenty-something stuff (Quarter-Life Crisis)? I don’t think I’ll ever really know.

My OCD is long gone but what lingers is the crazy/sad love. I still don’t always know what Nat wants or if I’m doing enough for him. I don’t know what progress is supposed to look like with him. How much of the disability am I to accept, and how much is just a product of my not doing enough?

There was an interesting post in the blogosphere today about parents who will do anything to make their autistic children “better,” or non-autistic. There was also an intelligent discussion over the suggestions in the press that parents and doctors are overdoing the diagnosing. I completely understand the desire to do anything to help your child excel, I just know that 1) you can’t have a balanced family life or life of your own if you are spending all of your energy trying to eradicate your child’s developmental disorder; and 2) I am not convinced it is possible to wipe out autism; and 3) I do not like the idea of working so hard to force my square peg son into society’s round holes.

However, where is the balance? I sometimes despair over the possibility that I have not done enough, because I tend to be scattered, poorly-organized, and inconsistent, all which can be the hobgoblin for growing autistic minds. Other times I am sad because I think, “Natty, you really were this autistic? How can that be? Where did we go wrong?” Oh, God, I am so sorry to say that, particularly knowing that autistic people read this blog. This is not about them. This is about a mother’s grief over the way something turned out for her child. And a wave of sadness washes over me; I can’t help it. I remember the bright golden firstborn son whom everyone in my family couldn’t get enough of. Everyone was jealous of me with my beautiful baby.

I sit there and let it linger and run its course, like a virus.

And then I look at him, and of course he’s pacing and silly talking and snorting (the house is really dry and dusty). His smile is wide and white. His hair is wavy, thick, and blond like ripe wheat, or honey on Grape Nuts. I want to hug him to me, just like I do with Ben or Max, but I can’t just grab them as if they were babies. And I get that old, familiar sad tug in my heart that I still don’t understand.

But what I do realize is: he is still my bright golden firstborn son whom most people love when they meet (bus drivers, teachers, family, friends). I want him to have a great life, not just one that is managed okay. I want him to have it all. I want his brothers to have it all, and they have a real shot at that. I mean friends, spouses, children, the whole nine yards.

But Nat will have a smaller life. And that is still sometimes hard for me to bear.

There is nothing wrong with him. He’s just a real odd duck, not at all whom I thought he was. The best I can do now is quit crying, get off my ass and do some programs with him, or read the Surfing Book with him. Get back in touch with what is good and forget the road not taken (the road not even there).


I read your blog often, and this one finally prompted me to write…Have you ever heard of the Relationship Development Intervention? RDI? It’s no cure, but it would certainly improve the quality of your interactions with Nat, and his overall enjoyment of connecting with the world. I know it would help him be more regulated at the very least. It is not as some people claim, just or alot like Floortime. FYI, I fancy myself a hip, LA born and bread, still trying to have a life Jewish Wife and Mom with 2 NT kids and one on the Spectrum… 8, 6, and 3, Girl, Girl, Boy with the middle being the affected child. And yes, we do RDI with her and it has helped in a big way… Oh, and as per your blog today, IT still sucks multi-dimensionally…

— added by Anonymous on Tuesday, January 2, 2007 at 9:32 pm

How I wish I was even this advanced. Horrible evil ache.

— added by mrs. gilb on Tuesday, January 2, 2007 at 9:33 pm

Some days, about all I have to hang onto is pride that I managed to give birth to a kid weirder than myself. (And that’s no trivial accomplishment!)

I’ve felt the paralysis of love before. I understand that part.

The thing that bothers me now is that several people, including my mother-in-law, noticed something “wrong” with Sam when he was very young, but I didn’t. The big thing is the eye contact — I don’t know if it’s that I do eye contact less, or he just does it more with me than with anyone else, but he made eye contact with me in an amount that seemed reasonable to me, but wouldn’t with some other people (such as his grandmother). What bothers me most is that they didn’t SAY anything to me. But Sam and I got along just fine, once he learned the “Don’t Bite Mommy” rule. He could communicate to me what he wanted, I could communicate to him what I’d put up with, and we did well together for over a year. (Sorry about that diversion, I’ve been wanting to get that off my chest — my MiL brought up the eye contact thing to ME for the first time over Christmas, and I’m still reacting to that.)

Thanks for the links to Estee and Kev’s blogs — I stopped reading the Hub as a whole after my surgery, and am just reading my most favorite ones right now. (I have this thing about getting caught up with them, one at a time, and I may just give up entirely in March or so — but in the meantime, I’m reading you and Amanda and Kristina and that’s about it at the moment. Next on my catch-up list is Zilari.)

— added by Julia on Tuesday, January 2, 2007 at 10:12 pm

This is one of your posts that I read over and over. You write with such honesty about emotions that hit every parent, especially those with children on the spectrum of autism. I wish I had something clever to say but I don’t. So I will just say “thanks for sharing”.

— added by Mike on Tuesday, January 2, 2007 at 10:12 pm

you nailed it. right here:

“don’t know what progress is supposed to look like with him. How much of the disability am I to accept, and how much is just a product of my not doing enough?”

— added by DeeDee on Wednesday, January 3, 2007 at 1:33 am

There’s a deep honesty here Susan that really embeds itself in my head. The things we want for our kids, expectations altered. You want them to have it all. But what is all to you, is a different all to him. And yes, that makes you feel such a deep pain and self questioning.

— added by Anonymous on Wednesday, January 3, 2007 at 4:15 am

Wow! OK, how is it that you are so good at putting my feelings into words?! Boy, you have a gift (and I’m not talking about Nat). You should think about compiling these posts into another book!

— added by Anonymous on Wednesday, January 3, 2007 at 1:48 pm

Mark Z: I am doing just that. Thank you.

— added by Susan Senator on Wednesday, January 3, 2007 at 2:24 pm

*Such* a good post. I’m a teacher, and my main conflict with autism (and with life in general, actually) is what I call “Their World vs. The World.”

Take, for example, autistic kids staring at a certain object for hours. To me there is a real beauty in this. It is Their World. How amazing it is that someone can percieve beauty in the water stain on the ceiling, and totally devote themselves to noticing things about it that I would never even dream of. And then there is The World: in order to survive and have choices in our society, one must be able to, for example, read. This is my opinion.

So the conflict is: at what point do I “uproot” the kid from “His World” and teach him the skills needed in “The World?” I refuse to sit around policing someone’s behavior because others don’t think it’s “normal,” or to militantly conform to some person’s convoluted idea of what a “normal” developmental timeline looks like. I had a student that literally learned to read in about two and a half weeks, at age 15.

When do I let the kid do his thing, and when do I push him out of the nest, so to speak? If I insist that he leave His World and join The World before he’s ready, will I crush his spirit, or give him some kind of complex that there is something wrong with His World? If I teach him life skills such as reading, computation with numbers, etc., he may choose not to utilize them, but if I don’t teach him these things, I will be choosing for him, and I don’t have a right to do that.

— added by Anonymous on Wednesday, January 3, 2007 at 8:19 pm

I cannot believe that I am not the only mother who feels these things! WOW! I think my world is finally getting bigger again! I have felt so alone since my daughter was diagnosed (most of it self-induced) and it is so great to know that I am not alone in my deep feelings of despiration and confustion! Especially when it comes to what is autism and what is my little girl trying to be a three-year old. Thank you so much for your honesty. It is truly inspiring!

— added by Anonymous on Wednesday, January 3, 2007 at 8:49 pm

Brilliant post, Susan. There are too many aspects within these few paragraphs that ring true, but unconditional love, acceptance and patience are three of many.

Thank you for sharing.

— added by Naranja on Thursday, January 4, 2007 at 12:17 pm

Sometimes you really tug at my heart Susan. My ASD kid is my firstborn also. I remember rocking him in the NICU and telling him “I think I am falling in love with you.” I had never felt that feeling before- not exactly. I love my husband completely- but in a different way. Not in that way that you can’t bear it and you’re literally FALLING in love.

As the others have said, thanks for your honesty and for writing so well!

— added by gretchen on Thursday, January 4, 2007 at 3:13 pm

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