Journeys with Autism

No, I’m not going to title this post Photo Phriday, lest the god of linguistics smite me where I stand.

To end the week, I’m posting one of my favorite photos. It’s one of Bob and me on our wedding day. I look so happy that it always raises my spirits to look at this picture. Hope it raises yours as well!

Have a great weekend, everyone!

Some 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

To all you moms out there: Happy Mother’s Day! I hope you have a fun and wonderful day. 

In honor of Mother’s Day, I’m posting some pictures of the person who made me a mom: my bright and beautiful daughter Ashlynne. All of the photos were taken last week, during a class trip to New York City.

On the train from Springfield:

On the ferry in NY:

At the Museum of Modern Art, looking like part of the artwork:

 

Just being bright and joyful:

Our plan for today is to go to one of my favorite kinds of places in the world: a perennial farm. I’ll get some new flowers, vegetable plants, and herbs. If the weather cooperates, I’ll get to do some planting in the garden, too.

Be well, everybody! 

© 2009 by Rachel Cohen-Rottenberg

Although spring officially started in March, here in Vermont it’s only arrived in the past couple of weeks. It’s been a lot of fun to see what’s appearing in our gardens:

I’ve planted another garden to the left of the one in the picture, but it’s not quite finished yet.

When I’m not digging up our entire lawn and planting things, I sometimes turn my attention to art. Here is a project that I just finished: a shadow box!

 
This project was so much fun. I worked on it when my mind was too full of words and I needed a different kind of concentration.

I bought the shadow box years ago, when my daughter was small, and it had been sitting in the attic unused. So, I decided to create “The House of the Worry Dolls.” The dolls are kind enough to hold many of my worries. At least, that’s what it says on the little piece of paper that came with them. If you look carefully, you can see a doll in each of seven rooms. (One of the dolls is in a tiny coffee mug.)

Each room gets its own hanging mobile or lamp. The origami crane at the top of the house came courtesy of my daughter; years ago, when we were homeschooling in a cafe, she made the crane out of a used teabag packet. The thermostat is from our old heating system, the two cats used to be earrings, and I found the orange Matchbox car out in the garden when I was digging up the grass.

And finally, here are some recent photos of my daughter Ashlynne. As you can see, she jumps for joy at the beginning of spring…

She hasn’t forgotten her powerful karate kicks…

 
And she has a style all her own!

Occasionally, she will even sit on a couch in the middle of the street:

Why? Because she’s resting. She’s been working hard. At what, you ask? At carrying the couch several blocks with her friend, of course! A neighbor had put the couch outside to be taken away for free, and Ash and her friend decided to carry it home. When they showed up with it, I told them to just leave it on the porch, and Bob and I would help them carry it up the stairs to Ash’s room. But they were on a roll. They brought the couch all the way upstairs as well.

Girl power!

© 2009 by Rachel Cohen-Rottenberg

My sweater, that is. My very first sweater!

I learned so much from working on this sweater. I figured out how to shape a collar, how to block the pieces, how to knit the shoulders together, and how to seam. I had planned to get help from the nice lady at the yarn store, but then I decided it would be more fun (and a better learning experience) to do everything myself. Typical Aspie, I know, but what can I do?

It’s actually chilly enough tonight for me to wear it. Our mornings have been below freezing lately, so I might get a little more wear out of it before spring begins in earnest. I’d much rather have the spring start already, but since it’s taking its time, the sweater is a nice consolation prize.

© 2009 by Rachel Cohen-Rottenberg

Well, I’m amazed, but I made it through our Passover seders in one piece, and I’m feeling pretty good.

On Wednesday, we were able to get all the cleaning and other preparation done with time to spare, thanks in no small part to all you wonderful people who extended so much kindness and support. On Wednesday night, we had a mini-seder for our immediate family–my husband, my daughter, and myself. We had the ritual foods, said the blessings, and then spent a lot of time singing songs from the haggadah.

We decided on a mini-seder because, a few years back, we had two full seders at our house and decided never to do it again. Basically, the first one left us running on fumes for the second one. So this year, our homemade, doing-it-our-way first-night seder was perfect for us.

We had invited guests over for our second-night seder, so yesterday, we got the house prepared. I set the table, got out the haggadahs, put out the seder plates, and made the matzo ball soup. My daughter helped my husband chop up apples and walnuts for the charoset (a mixture of apples, walnuts, and grape juice that my daughter could eat 24/7), and my husband prepared the chicken.

At one point in the afternoon, I began feeling very apprehensive and irritable, and it occurred to me that I needed to clarify my role in the seder. So I told my husband that since singing is very soothing to me, I would like to lead all the singing, while he could take charge of navigating us through all the ritual.

It took some time for me to explain to him what I needed, and it took some time for him to say that he didn’t want me to blame him if I had a bad time. Yes, I’m sorry to say, we’ve been there before with the blame thing. We’d go to a social gathering, and I’d feel excluded and expect him to make everything all right. When he didn’t, I’d get upset with him. This time, I reassured him that however the evening went, I wouldn’t blame him and that I wasn’t interested in tapping into that pattern again. Been there, done that, enough already. He felt reassured.

I then made one of the best decisions of my life, ever. I took the two weighted blankets we have, brought them up to my loft, put them on the futon, and laid down under 30 pounds of beans and fleece. Then next thing I knew, it was an hour later, and my daughter was knocking on the door, telling me that it was 6:30 pm and that everyone had arrived. I had actually napped! Usually, the best I can do before a social event is to lie down, concentrate on my breathing, and try really hard not to get a migraine or a stomachache. The nap put me in such a calm and grounded mood that I felt ready to meet the world.

There were seven people in attendance: my husband, my daughter, my stepson Elijah, our friends Julia and Tristan, my daughter’s friend Claire, and myself. Because Julia used to be the music teacher at my daughter’s school, she knew my daughter and her friend, and since my stepson teaches at the school, she knew him as well. So everyone there was connected in some way to everyone else. That made for a very good feeling.

There was quite a bit of ritual before dinner, and everyone seemed very engaged. Sometimes at seders, people show up out of obligation, or take on the role of tourist and just watch the proceedings. It can be very tiring to host a seder under those circumstances. Luckily, at this seder, everyone was there by choice and ready to jump in. I took the lead on the singing, and I had a great time with it. Julia is an artist by profession, with a beautiful singing voice, and when she didn’t know a song, she picked up the melody quickly and added some gorgeous harmonies. The dinnertime conversation was very friendly, and then we finished with some really fun seder songs.

I had thought that I’d need to take some breaks during the evening to fend off sensory overload. In fact, I’d planned on it. I had everything set up so that I could go and snuggle under my weighted blanket and calm myself down when I needed to. As it turned out, I didn’t need to take a sensory break. Instead, I found that the sensory protections were built into the evening.

First of all, I decided to wear my weighted OT Vest. I felt a bit self-conscious about wearing a 4-pound vest, but it was a damned sight better than getting a migraine, so I went for it.

Second, the social gathering was held together by a traditional structure laid out in a book. I had forgotten how much any kind of ritual structure wards off sensory overload for me. It always makes me feel calm because I know where I’m going. For Passover, it’s the same routine, every year, and for an Aspie, that is a Very Good Thing.

Third, I had a job to do, leading the singing, so that gave me a significant focus. There aren’t just a few songs scattered throughout the evening. There is at least one song on nearly every page. That held my attention and kept it from getting too diffuse.

Finally, I realized that I could do a lot of work with my hands, which is also very grounding for me. There were a lot of plates to bring back to the kitchen after the first part of the ritual, so as to make room for dinner. Plus, because dinner came in several courses, there were different kinds of food to bring back and forth. I took on the role of making sure that everyone had what they needed, and then I sat down to have dinner, too. Being able to get up and walk around was a good sensory break.

As for the “otherness” factor, it was definitely there. I was aware that I wasn’t keeping up with what people were saying, and that over dinner, with more than one conversation going, it was hard for me to hear all the words. I felt so comfortable with being an oddball, though, that I stopped things every now and then with “What did you say?” or “I don’t understand” or something equally honest about how clueless I felt. No one seemed to give it a second thought, probably because I wasn’t trying extra hard to be “normal.” I was just feeling comfortable being the weird Aspie at the end of the table.

After lots of very fun and raucous singing, we finished a little after 11 pm. Instead of being wired and exhausted and up till the wee morning hours, as I am after most other social gatherings, I actually fell asleep by midnight.

I couldn’t have asked for a better time.

© 2009 by Rachel Cohen-Rottenberg

I’m happy to announce that Asperger Journeys has won its first award, care of our friend Erin over at My Aspergers Girl. It’s called the Honest Scrap award, and it’s given to blogs meeting the following criteria:

“These blogs are exceedingly charming. These kind bloggers aim to find and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated. Please give more attention to these writers. Deliver this award to seven bloggers who must choose seven more and include this cleverly written text into the body of their award.”

The rules for accepting the Honest Scrap award are:

*Choose 7 blogs that you find brilliant in content or design.

*Show the 7 winners’ names and links on your blog, and leave a comment informing them that they were prized with “Honest Scrap.”

*List at least 10 honest things about yourself.

Here are my choices for the latest winners:

Confessions of a Quirky Mom
Paths in the Grass
StaticVox
organizing the jelly beans
General Disarray
That explains everything
Adopting the Spectrum

And now, ten honest things about myself that I haven’t already revealed in my blog:

1. I am 5′ 1″ tall.

2. I have hazel eyes with a fleck of red in each iris.

3. My idea of heaven is for someone to use a Thumper on my back while feeding me warm chocolate-walnut brownies for all eternity.

4. I don’t understand how people can wear spandex and not go completely berserk.

5. My favorite movie of all time is the 1984 version of Metropolis with the Giorgio Moroder soundtrack. My daughter once said to me, “Mom, you love Metropolis so much that if it were a person, you’d marry it.”

6. Gwyneth Paltrow is my 6th cousin. I’ve never met her, but I love her movies, and my daughter and I refer to her as “cousin Gwynnie.” I have photos of our mutual ancestors on the wall (along with every other ancestor whose photo I’ve been able to locate).

7. My favorite moment of every year is when the snow melts and the perennials start peeking up from under the ground. I’ve watched it happen for decades, and every time, I still can’t believe it.

8. I find South Park hilarious because it combines great social commentary with an outrageous lack of political correctness.

9. I feel the need to justify how much I love South Park.

10. Obama! Obama! Obama!

Thank you, dear readers, for all of your support and encouragement.

© 2009 by Rachel Cohen-Rottenberg

I’ve been having so much fun lately working with my hands. It gives me such a sense of balance and well-being.

Until last week, it had been a long time since I’d done any sewing. My last major sewing project had been a baby blanket I’d designed and sewn by hand when my 16-year-old was an infant. But more recently, I’d had a dress hanging in my closet for a few years, and while I loved the material—a beautiful Guatemalan cotton print—the dress itself had never really suited me. It was a winter dress, with long sleeves, and not all that comfortable. I think I wore it once.

So last week, I realized that it was really okay to take the dress apart and make something else with the fabric. I’m completely in love with Guatemalan fabrics and patterns, so I decided to make something I’d get to look at on a regular basis. But what to make?

Well, first I took one of the panels from the long part of the dress and sewed it into a simple bag. I used the ties that were on the waist of the dress for the over-the-shoulder strap. Here’s how it came out:

Then, I decided to make a skirt from the remaining panels. I think it came out quite well:

I’ve still got some material left. I’m thinking that I’ll save it for making some sort of mobile. Perhaps a set of stars? Not sure, yet.

I’ve also been keeping up with my knitting. Several weeks ago, I bought a knitted 100% silk scarf at the thrift store for $6.00. It was really long, and I figured I’d unravel it and make something out of it. When I got it home, I noticed that it had a mildewy smell, as though it had been in a damp basement for several years. So, I put it through a gentle cycle and then laid it on a towel on top of the radiator to dry. The next morning, I unraveled the scarf and got a giant ball of yarn. The mildewy smell was entirely gone, and about half the ball of yarn became a very soft, fuzzy hat:

I’ve also made some good progress on my sweater project. I’ve got the front and back completed, as you can see:

I’m also nearly finished with one of the sleeves. As soon as I get both sleeves done, I’m going to block the various pieces and then make some time to see Rachel at the yarn store for help with sewing it all together. I’m not really in a rush to get the sweater done before spring. At this point, making the sweater is as much about learning the skills needed as it is about making something to wear.

Today, I’ve put the fiber art aside because we have one of my favorite Jewish holidays coming up: Purim, which begins on Monday night. (If you don’t know about Purim, you can find some good, basic information here. The page even includes a gluten-free recipe!)

Then, we made the chocolate chip kind:

They smell and taste as good as they look!

© 2009 by Rachel Cohen-Rottenberg