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May11
The Words I Most Needed to Hear
11 CommentsSome momentous personal things have occurred since last Friday. It’s taken me awhile to know how to express what I feel about them. Although I woke up with a bad cold today, I’m feeling fairly lucid at the moment, so I thought I’d start describing the happenings.
Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.
Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”
In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great.
Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:
1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.
Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.
So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.
When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”
Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.
Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”
And then he said the words that I’ve been waiting to hear all my life:
“It’s not your fault.”
I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.
Wow.
Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.
But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.
I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.
So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.
And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”
I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.
I melted. Again.
So, in the course of 72 hours, I got to hear the words I most needed to hear:
My challenges and disabilities are not my fault.
I am an awesome mom.
It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.
Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think?
© 2009 by Rachel Cohen-Rottenberg
11 Responses to “The Words I Most Needed to Hear”
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Wow posts like this make me so grateful for how mild a case of AS I have. I have the occasional meltdown but those last 2 hours tops and the rest of my AS stuff is advantages i derive and a bit of social awkwardness. Oh and the double-edged sword of excessive meta-cognition.
I wish you luck in improving your life may you some day be able to do everything you want to do.
And since this is my first communication with you let me welcome you to the Autistic Community. -
Im not sure I see why a cold is good, but you’re an AMAZING writer. the way you described that – wow. Totally what happens to me all the time. Totally ….. I am so glad you got to hear the words you needed. I’m glad you’re here.

PS Not having been raised in a family as religiously Jewish as yours I find the Shabbat preparations fascinating….. would be fun perhaps. -
Craig Liley May 12th, 2009 at 3:20 am
Thank you for this blog. It is so wonderful to not have to feel so alone in the world. To know that others are feeling these same things. You are truly an amazing person, I know I can’t imagine raising a child, yet you seem to have not only done so, but done an incredible job of it. Also, you are a fabulous writer. I love how you are able to put into words thoughts and feelings I’ve struggled for years to convey. You have really restored my hope. Thanks again.
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John Dale Lyons May 12th, 2009 at 4:47 pm
I want to buy the movie rights…
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Samuel: Hi, and thanks for the welcome.
Kate and Craig: I’m so glad you can see your experience reflected in mine. It’s so great to know that we’re not alone, isn’t it?
Re: getting sick as a positive…Some years ago, a doctor told me that it was actually a good thing to have a cold now and then, because it means that the body is getting rid of the germs that are lying around in it. It’s no fun having a cold, but at least I know I’m on the road to getting better now. Being kinda-sick, kinda-not is much harder for me.
John: You want to see my meltdowns on the silver screen? I think not.The last one wasn’t very intense, but when I was younger, some of them were stellar.
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Excessive metacognition? Think I might be getting there.
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That is good stuff
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You definitely are an awesome mom! And a fabulous writer. Thank you for putting all of this into words – they are a lifeline to me as I struggle to understand my daughter. Things that were easy for me are really hard for her. They always will be hard for her. And that’s okay, as long as she knows it’s okay. Reading what you write is like looking into her future. It’s a good future. Thank you for giving me a glimpse into it.
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great stuff, rachel. so good to hear.
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Thanks so much, everyone. I love reading your comments and knowing that what I write makes a difference.
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Asperger’s is an important part of one’s identity and i have found both positives and negatives of the particular ways our brains are wired are closely tied together.




