Susan's Blog

Friday, May 19, 2006

Flowers Never Bend With The Rainfall

Through corridors of sleep
Past shadows dark and deep
My mind dances and leaps in confusion.
I don’t know what is real, I can’t touch what I feel
And I hide behind a shield of my illusion.
So, I’ll continue to continue to pretend
My life will never end
And flowers never bend with the rainfall.

–Simon & Garfunkel, 1965

Why does my equanimity slip through my fingers like water? The day after writing my screed about the Autism Everyday video from Autism Speaks, I find myself feeling completely defeated. I brashly posted yesterday’s blog entry on an autism email group I’ve been part of for some time, and everyone who responded talked about all the different recovery treatments they were pursuing, and how they’ve been so successful. How moved they were by the video. How they will never stop trying to make their children “well.” It was kind of the last straw for me. I unsubscribed, because I could no longer bear to read about the various modes of chelation, the oils, the vitamins, the diets, the laying-on-of-hands and the children who mysteriously de-autisize.

Then I got the news that Nat had a half-day today. All plans shot to hell. I said to Ned, “I can’t do it — ” Last time I brought him into the boys’ school at pick-up, he had a terrible tantrum and was hitting me and Ben in the head over and over. I had to walk him out of the school, holding his hands together. Thank God I could.

The funk settled over me like the dust that gathers in the corners of the house, minutes after I have vacuumed. Suddenly, looking at Nat, whom I still cannot leave alone in the house, I felt so trapped. This is forever. Eternal responsibility. Albatross in the shape of a beautiful young man. I felt the old familiar torpor, the overwhelming need to nap, heavy head crushed against soft white pillow, the desire to cry and cry without anything tangible causing it.

I looked at Nat, as still as Buddha, on the white couch, and I heard the same evil tape recording playing relentlessy. Did I…? Why doesn’t he…? Will he ever…? We don’t even have a regular respite worker! All he does, aside from school, in terms of therapy, is speech once a week. We are so pathetic! What might I have missed?

I was so sad about being sad about Nat. A direct violation of our Sweetie Treaty, Ned’s and my contract from long ago: No feeling bad about feeling bad. But I did. I really did.

The heavy rain did not help.

Ned knows me so well. He knows how conceivably, I could put on the Allman’s Sweet Melissa, the song that conjures up Nat’s labor, and weep fresh tears until my whole face is puffy and red. I could eat a tub of chocolate ice cream without blinking. Finish it off with doritos. Call up friends who are not always so good to me.

After lunch the Winston Flowers truck drove up. Parked unmistakably in front of my house. The guy came out with a huge, chunky floral arrangement of tight orange ranunculus, Caribbean blue hydrangea, peach roses, and lilacs. The color seemed especially vivid in the gray of the afternoon sky.

Ned, I thought.

The card read, “Stay Strong.” Ned, I’m getting there. If only this rain would stop.

A good, strong moment.


I can’t speak for everyone but I do know that when C was diagnosed, “cure” was the only thing on my mind and I researched and tried many different things. I feel I’ve accepted C now and we no longer mix up a daily supplement cocktail for him. He does get lots of therapy though and it has done wonders for him. I don’t fault parents who want to try lots of different methods because I was there at one point.

Beautiful post. We’ve all been there. If I could give you a hug, I would. Hang in there.

— added by Wendy on Friday, May 19, 2006 at 8:32 pm

As parents we always will question if we did the best that we could have for our children. Nat is loved. Loved so deeply by your family. That’s something therapy, special oils and detoxification can’t give.


— added by Mom to Mr. Handsome on Friday, May 19, 2006 at 8:59 pm

It’s tough to have the aggressive behaviors. How do they help Nat with these at school?

— added by kristina on Friday, May 19, 2006 at 9:14 pm

What Kristin said!!

You and your family have a love for one another that is stronger than all this $#!+ that dumps upon you every so often.

Susan, you have bravely joined a minority of parents — many of us spectrumites ourselves, but many not — who are swimming upstream against a strong current of the sort of polluted water churned out by the likes of Autism Speaks, DAN! and CAN, NAA, Generation Rescue, and even the people who misrepresent and mismarket ABA as a means of making your kid “normal”.

They all want you to measure your self-worth by the yardsticks of “cure” and “normal” and “have I done enough to fight this?”.

They’re wrong. Their attitudes cause alienation of parents from children, parental stress and despair, continued stigma and devaluation of disability and non-normativeness, and are ultimately toxic to the growth of the kind of love you and your family have for each other.

That isn’t to say that there isn’t stress from the difficult moments Nat (and for that matter, his brothers, too) can get you all into.

But it doesn’t have to be made worse, and that is exactly what the “conventional wisdom” on autism — the cure mentality — does.

Develop skills, yes. Solve problems, yes. Establish accommodations, yes. Mitigate handicap; remove barriers. One handicap or barrier at a time. Learn to think autistically about it — in parts rather than as a monolith, and one part at a time.

And throw the God-damned yardstick out the window. You don’t have to be in competition with the Joneses if you don’t want to be. And you have every right to *shame* the majority into granting you the slack that you and yours need to survive and thrive.

Yes, you will need to work over the coming decades, you and Ned and Nat’s brothers as they mature, to make sure that this world has a decent place for Nat for the rest of his life. But you have *decades* to work that out, and Nat himself is a moving target (and in the long run, even if it doesn’t seem like it sometimes, moving slowly but surely in the direction of *improvement* in the skills and knowledge he will need to live when you are gone).

Our lives as families with autistic members are *not* Alison Tepper Singer tragedies. Even on rainy days when things are difficult for you and Nat and the rest of the family.

Thank God.

You have love for each other that I don’t think she and her ilk would even recognize if it hit them over the head.

— Phil

— added by Phil Schwarz on Saturday, May 20, 2006 at 3:20 am

Thank you, Kristin, Wendy, and Phil! Kristina – the school cues Nat to sit down quietly at a table by himself for a moment to cool off, and we do that, too. It just wasn’t possible at the boys’ school that day. And truthfully, Nat almost NEVER aggresses anymore, knock wood…

I reread it today. I’m sorry, Nat. Forgive me for being a moody mom!

— added by Susan Senator on Saturday, May 20, 2006 at 7:00 am

The video was horrible and on the day that I viewed it, I was having a “bad autism” day and it encompassed all that I was feeling that day. It was a Jerry Lewis Telethon video. Designed to pull those heart strings enough to move the hands to the pocket book.

Most days aren’t that bad for me. We also have gone through the gamut of diets, supplements, snake oil, none of it worked. ABA works. It doesn’t make Charlie ‘un-autistic’, but it helps him behave in a world that is alien to him.

What works for us is just not giving up. Just like in your family. Just being there. I know Charlie will never stop being autistic (it was really hard to write that just now), but on my good days I can deal with that. On my bad ones I remind myself that there are parents dealing with cancer, down syndrome, flesh eating bacteria…I will take autism.

I am grateful for your book. It has lifted me up tremendously. I find similarities between Nat and Charlie that give me hope that I am not alone.

Please keep writing. You may say things that are unpopular, but your viewpoint is very important.


— added by Mom on Saturday, May 20, 2006 at 2:45 pm

Amen to what Jan wrote as well! I have said on more than one occasion, “Wes will always be autistic. That’s who he is”. On some days it’s easier to handle that thought than on others. But it helps me to maintain a balance especially when we contemplate what is next for him and what could be longer term for him. There are no certainties or obvious answers to guide us and ultimately it lies within our autistic son to show us the right direction. And that will only happen on his schedule and in his way.

I get bombarded by questions about why we haven’t pursued treatment other than ABA, sensory integration, and speech. And bombarded with “suggestions” from other parents at his school who are into chelation, supplements, etc., I know they’re well intended (most of the time), but on some days I just want to yell: “who are you kidding!? Stop deluding yourselves!” I agree with Phil’s assertion about “the cure mentality” and taking things a step at a time. And that is what my family and I focus on: what problem do we need to solve now, what skill needs work, what new situation do we prepare him for…

We too are so very blessed to have a very tight-knit, loving and devoted family surrounding Wes. I think that makes such a difference. And as Kristin said, it’s something therapy, oils, etc., can’t give.

Keep the faith Susan and stick to your convictions. I love your book and your blog. Always causes me to reflect. Ned gets a BIG gold star for sending the flowers — what a guy!

— added by Lisa L. on Sunday, May 21, 2006 at 12:46 pm

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